Purpose of the training
Introduction:
The National and Provincial AIDS Control Programmes with the support of partners such as
UNICEF, UNAIDS, UNFPA, World Health Organisation (WHO), Family Health International (FHI),
Catholic Relief Services (CRS) and Interact Worldwide are responding to the emerging care and
support needs in Pakistan by providing primary health care, and psychosocial, nutritional, and
social support, such as school fees and other support.
The care and support needs in Asia are growing. The number of people newly infected is rising in
most countries in Asia, and in others more and more people are living longer as they access lifeprolonging antiretroviral medicines (ARVs). Creative community strategies are being implemented
across Asia to ensure that families and individuals have the care and support they need to lead
healthy, productive lives.
As non-governmental organizations (NGOs), respond to the increasing care and support needs in
communities, they need tools to help care for, as well as educate people living with HIV about the
disease, their options to manage it and its consequences.
In an effort to accelerate the scale up of care and support interventions in Pakistan, the NACP
and partners held an 8-day training of trainers on care and support for PLHIV in June 2008 in
Islamabad, Pakistan. The result of this training is not only an increased knowledge among those
who participated, as well as a planned further roll-out within their organizations and for other
NGOs working with and for people infected and affected by HIV and AIDS. The material
presented in the manual was revised by the trainers after conducting the initial trainer of trainers
in order to ensure the most relevant material for care and support training programming in
Pakistan.
Country background:
Pakistan has a concentrated epidemic with an estimated 85,0001 adults aged 15-49 years living
with HIV. Data from the first and second rounds of the HIV and AIDS Surveillance Project
(CIDA/NACP) suggest prevalence rates of up to 52% in injecting drug users; up to 7% in male
sex workers and up to 13% in hijra sex workers. In addition, there are many overseas migrants
who were deported from the Middle East due to their HIV positive status, although no prevalence
rate has been estimated for this population. The Government is providing free HIV diagnostics
and treatment; however, the burden of care has fallen on the NGOs servicing these populations.
Pakistan has a unique model of Government sub-contracting their HIV and AIDS projects to nongovernmental organisations. These organisations were expected to carry out voluntary
counselling and testing (VCT) and started to do so in 2007. These organisations, originally
contracted to implement prevention services, now find themselves with members of their target
populations HIV positive and no skills or experience in care and support. In addition, some
members of these populations, particularly injecting drug users and most-at-risk adolescents are
homeless so creative strategies need to be employed for these groups to provide care and
support services, including treatment adherence. NGOs specifically working with people living
with HIV (PLHIV) including returned migrant workers and their families (the first identified HIV
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UNAIDS, 2007.
1
positive cases in Pakistan) have some care and support skills they have developed over time
through experience; however they may lack specific tools and skills for example, for treatment
adherence.
We hope that the information articulated in this manual will help in enabling people living with HIV
and AIDS, and NGOs and Civil Society Organizations working with and for people infected and
affected by HIV to effectively support the people whom the serve, may it relate to psychological,
medical or even economical needs.
Quick reminder:
HIV stands for Human Immunodeficiency Virus
HIV is a virus that causes AIDS (Acquired Immunodeficiency Syndrome).
HIV attacks the human body by breaking down its immune system that is meant to fight diseases.
AIDS stands for Acquired Immunodeficiency Syndrome
AIDS is a health condition, a syndrome that results from the disabling of the body’s immune
system following HIV infection.
Over a period of time, the immune system weakens and the body loses its natural ability to fight
diseases. At this stage, opportunistic infections affect the HIV-infected person.
Modes of HIV transmission:
 Through unprotected sexual contact with an infected person; male to male, male to
female or vice versa, or female to female
 Through transfusion of infected blood and blood products or infected organ transplants
 Through use/sharing of infected needles, sharps surgical and dental instruments
 From infected mother to her child before, during and after birth
Preventive measures:
 Limit number of sexual partners
 Use of condoms during sexual contact
 Use of disposable/new syringes
 Treatment of sexually transmitted infections (since STIs facilitate transmission and
acquisition of HIV)
 Ensure usage of screened and HIV negative blood products/organs
 Proper sterilization of surgical/dental instruments and other sharps
 Drug treatment for HIV+ pregnant women
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How to use the manual
This training manual is comprised of a trainer’s manual, a participant’s manual containing
replicable participant’s hand-outs, and a CD Rom for trainers including additional handouts and
all reference documents.
The manual is the result of an 8-day intensive training whereby the following consultants were
invited to develop and deliver modules on selected topics related to care and support and revise
their training modules according to the feedback from their respective sessions.
Module 1 Communicating with HIV positive clients – Ms. Fatima Batool
Module 2 General Care and Support Principles and Strategies – Dr. Vu Ngoc Phinh
Module 3 Special considerations with antiretroviral medication – Dr. Rizwan Qazi
Module 4 Special considerations with children including MARA – Ms. Rachel Odede
Module 5 Care and support for injecting drug users – Mr. Luke Samson
Module 6 Care and Support for male sex workers and men having sex with men – Mr. Andy
Meléndez Salgado
Module 7 Care and support for female sex workers – Ms. Cheryl Overs
Module 8 Introduction to the National Strategic Framework for HIV Treatment, Care and Support
in Pakistan – Dr. Ayehsa Khan
Module 9 Mapping Pakistan Care and Support Referral Network – Dr. Naveeda Shabbir
Please note that statistics cited are 2007 data for the global epidemic (mostly taken from
UNAIDS) and Pakistan specific data can be as recent as 2008 (for Module 8). Presentations
should therefore be updated with current statistical scenarios.
The target audience is medical or non-medical caregivers (NGO, peer, family or individual)
providing care and support to people living with HIV.
The manual begins with a module on communicating with HIV positive clients, followed by a
general introduction to care and support for PLHIV. Then dedicated sections on providing care
and support to specific populations follow. Although the manual serves as a reference manual for
issues pertaining to groups practicing high risk behaviours (IDUs, FSWs and MSWs), children,
including most at risk adolescents, and ARVs, going through the principles on care and support
first is highly recommended.
The manual is meant to support those who attended the training of trainers and are now rolling
out the care and support training within their own organizations and for partner.
The trainer’s manual encompasses lectures including explanations and reference documents,
group activities and discussion points.
The participant’s manual includes handouts, activities and exercises. Trainers are responsible to
duplicate and distribute the right handouts, work /activity sheets and presentations to the
participants. Some of the handouts can only be found on the complimentary CD-rom and need
first to be printed for the participants. The participant’s manual can be either handed out at the
beginning of the entire training in case advanced familiarizing with the topic is wished or the
relevant pages relating to the various modules can be distributed before each new session.
Powerpoint presentations in word format for printing and distribution are included in Annex 1.
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Annex 2 includes all references and additional readings.
Annex 3 includes all relevant HIV services in Pakistan.
The CD-rom is divided into different parts: trainer’s manual, participant’s manual (handouts),
Annexes and individual modules containing the presentations in powerpoint format and
background documents (some for printing and dissemination).
A variety of approaches to teaching and learning will be adopted, with the underlying assumption
that participants are adult learners who will take considerable responsibility for their own learning.
The focus will be on active learning and should emphasize the key knowledge and skills needed
for to assist service providers in providing care and support, including sexual health care to
people living with HIV, including injecting drug users, male and female sex workers and men who
have sex with men and transgender people.
Be flexible in your timing. The amount of time for each session will vary depending on
participants’ experience with the given populations. Take advantage of more experienced
participants who can help you train others who have less knowledge of these topics. Activities
can be expanded to cover issues in greater detail or constricted to cover only the more
introductory or basic elements should that be appropriate.
The knowledge and skills that participants bring to the course are important to the learning
process and participants are encouraged to share this knowledge and skills and to raise issues
that they find challenging in their own work. Please do allocate time to question and answer
sessions.
Some areas to train about are more sensitive then others and exercises, activities and pictures in
the presentations should be adapted to suit the audience and location.
It is important to recognise and respect diverse views in all training that addresses harm reduction
related to behaviours that are considered unacceptable (homosexuality, prostitution, drug taking).
Training sessions should “meet people where they are’ rather than dictate where they should be.
At the same time the training should meet professional standards and principles and not reflect
prejudices and inaccurate information.
Also have the following available:
 Overheads or Powerpoint slides for these powerpoint presentations (found on the CD-rom)
 Overhead or LCD projector, extra extension cord/lead
 Flipchart or whiteboard and markers or blackboard and chalk
 Pencil or pen and writing pad for each participant
 For demonstration purposes you can bring ARVs, hygiene article (soap to display hand
washing), condoms and what ever else you think could be useful!
Please feel free to replicate, amend, adapt and most importantly train with this manual as
needed.
If you need additional copies of the manual or the CD-rom or if you have suggestions, corrections
or additions, kindly get in touch with the National AIDS Control Programme at +92 (0) 51
9255367/8 or UNICEF at +92 (0) 51 2097700.
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Principles and methods of training
Some key points you might want to consider before you start your training session:
 Prepare well for your training day keeping in mind your audience
 Have a round of introduction of the trainees and try to memorize their names
 Provide a training overview and objectives
 Establish ground rules (such as no cell phone, no side conversations, and respect for other
opinions)
 Think of enough drinking water, refreshers on the tables and coffee/tea/lunch
 Have small breaks
 Have ice breakers, energizers and wrap up sessions
It is crucial that you “get the message across.” So you want to convey your messages
successfully, transfer related information and have your trainees remember and reproduce these
very messages.
You, the trainer are the most important factor of a successful training. The trainer who is
enthusiastic, energetic and genuinely interested in both the subject and getting the message
across will evoke the greatest response from the trainees.
A measure of the success of training is the relationship that develops between trainer and
trainees. In a productive training situation there is mutual respect and trust between both, with the
trainer taking care to ensure that even the weakest trainee performs to the highest possible level,
and the trainees feeling a desire within themselves to achieve. In this situation the trainer is the
motivator and the trainees are the motivated.
As a trainer you will be judged and understood through several ways: spoken language, written
language and body language (i.e. gestures).
Successful communication depends on the message being received by the trainees and
interpreted by them to have the same meaning as when you spoke to them. The message should
not be weak, garbled or using vague, inconsistent, or wrong words.
The trainer should always keep the attention of the audience: be interactive, speak clearly, slowly
and deliberately, and use appropriate language. The trainer should not have to compete with side
discussions or interruptions from participants; however, addressing their questions is fundamental
for a successful training.
You can obtain and hold the learner’s attention by:
 Relating what you aim to teach to those subjects in which you know the trainees are
interested.
 Introducing the session in such a way that the trainees will not only see and become
interested in this relationship, but will want to learn more about it.
 Beginning with a good story to which the trainees can relate. An effective trainer makes it
his or her business to know the background of the trainees.
 Having done these things, maintain the trainees' attention by doing all that is possible to
facilitate their understanding and absorption of the material.
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 Ensure that the trainee's learning is an active process in which the trainer and trainees are
equal partners in terms of participation.
Men and women in training positions are expected to be highly competent at presenting ideas,
giving directions and explaining procedures. Being an effective communicator is generally
considered to be an essential element of the effective trainer's skills. Basic communication skills
include stating the purpose and main point of the message, strengthening the main point with
supporting points and lastly check whether the message got across.
The trainer also needs to be prepared to respond to reactions to what was presented. Listeners
question speakers when they have not received (not understood) the message, or because the
message is unclear, or because the details are vague. Generally, they are not challenging the
speaker as a person; they are simply seeking clarification. Please make sure you understand the
question. Never, never make fun of a questioner who has completely missed your message.
Before leaving the participants on their own, you should summarize your main points. A short,
simple restatement of the essential message(s) helps the listeners to remember and respond.
Being prepared is the clue to a successful training session. Nevertheless, you can encounter
nervousness, forgetfulness and lose track. Two ways to prevent these difficulties are using notes
and rehearsing the presentation of your message.
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Module 1- Communicating with HIV positive clients
Objective: To develop skills to communicate with HIV positive people
Total Time for module: 3:15 hours
Methods:
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Discussion
Presentation
Role Play
Exercise
Contents:
Session 1.1 Feelings and needs of HIV Positive people
Session 1.2 Examining our own values and believes
Session 1.3 Communication Skills
Session 1.4 Activity
Session 1.5 Adherence
Session 1.6 Role Play
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30 min
30 min
1h
30 min
25 min
20 min
Session 1.1 Feelings and Needs of HIV Positive People
Time: 30 min
Trainer Instructions:
Presentation 1 Slides 1-4 and prepare below activity either
with overhead projector or flip chart
1. Activity:
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Inform the trainees that you are now going to move to training on understanding
thoughts, needs and feelings of HIV positive people. Inform them that you plan to
introduce the topic with an experiential group activity.
Note that this activity makes no assumptions about the trainees’ HIV status and that
you recognise that this may raise personal issues for the trainees. Offer an
opportunity for the trainees to engage in a confidential debriefing session with a
workshop facilitator should the need arise. This is an important statement to make to
the group, as there may be trainees who either personally, or someone they are close
to, may have been diagnosed with HIV.
Position the overhead transparency sheet for results (table below) onto the overhead
projector without turning the projector on. Inform the trainees that you will now briefly
switch off the lights for part of the activity. If you do not have a projector, prepare the
flip chart with 3 columns and below titles. Do not yet show the audience the flip chart.
Ask trainees to think back to their first job and career progression to this day and to
think about their plans for the future in terms of professional growth, family members
and relationships etc. for about 5 minutes. Ask them to visualise family members,
partners and colleagues.
Switch on the lights and turn on the overhead projector or show the flip chart. Ask
trainees to note the emotions they would have experienced had they been told that
they are HIV positive. They are not to reflect on how the clients would react but how
they would react.
Ask trainees to share with the group their emotions and thoughts that they had in this
activity.
List and discuss their “needs” at the moment of being informed of their HIV results,
bearing in mind the items on the “emotions” and “thoughts” list.
Emphasise that the exercise that has just been completed illustrates what goes
through the minds of HIV positive people.
Discuss the implications of these emotions on the communication with them.
Emotions
Thoughts
Needs at this moment
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HIV is a chronic disease (one that lasts a lifetime). It affects the whole family and is often
associated with stigma. PLHIV have many needs beyond medical care. These needs will vary
with the individual person, family and circumstances they are experiencing at the time due to the
effects HIV brings to their life. More than any disease in recent history, HIV infection brings into
focus the relationship between illness and its psychological and social ramifications. People living
with HIV infection are confronted with severe illnesses, neuropsychiatric disorders, overwhelming
societal responses, and complex social and psychological needs.
This multidimensional disease challenges not only the individual infected with HIV, but also
people whose lives are indirectly touched by the epidemic. New psychosocial issues are
emerging with the widespread use of powerful and effective combination therapies. For those
who have access to the drugs and for whom the drugs work, dramatic improvement in health
status and survival occur. Individuals once focused on dying may find themselves concerned
about the issues of living with a chronic disease. For many, this comes as a shock and may
create the need to mend relationships, to return to work, to consider long term financial planning,
to reassess life goals, and/or to completely change decisions that were made when the expected
life span was limited. For others, new drug therapies do not bring hope. For those who cannot
access the drugs or for whom the drugs show no benefit, the result may be despair, grief, anger,
guilt, or a fatalistic outlook. These individuals need support and education about future treatment
options to maintain hope.
A major psychosocial issue brought about by the advent of new treatment protocols is the need to
adhere to prescribed treatment regimens. These regimens are often complex and confusing;
difficult to schedule; require a high degree of knowledge, skill, and personal commitment; cause
unique and different side effects; will, at least according to current research, be prescribed for the
rest of the patient’s life; and taking them can potentially compromise a person’s confidentiality in
social or work settings. These conditions, superimposed on social, economic, familial, cultural,
spiritual, and psychological factors in the HIV-infected person’s life, can result in a situation where
consistent adherence will be difficult. Clinicians must be constantly aware of these issues in order
to assess problems and work with the client to solve them. Consultation and referral to various
team members, including physicians, nurses, social workers, case managers, counsellors, and
educators, should occur routinely.
Session 1.2 Examining our own values and beliefs
Time: 30 min
Trainer Instructions:
Presentation 1 Slides 5-6 and have participants do exercise
“controversial statements” below
Exercise : Controversial Statements
Purpose
To explore participants' attitudes and values about a range of
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Exercise : Controversial Statements
potentially sensitive issues related to HIV and AIDS
To develop an understanding of and respect for the diversity of
opinions within the group
To recognize and become aware of our own values and attitudes
regarding HIV and AIDS and how these might impact our work
To explore how to remain neutral while working with clients
despite our own values and attitudes
Duration
30 minutes
Introduction
Prepare two pieces of flipchart paper by writing "Agree" on one of
them and "Disagree" on the other. Post the "Agree" and "Disagree"
signs on opposite sides of the room, or on one large wall, a few body
lengths apart
Explain that this exercise will help us understand viewpoints that are
different from our own, and to consider how these attitudes and
beliefs about HIV and AIDS might affect the way we treat clients.
State that there are no "right" or "wrong" answers and that we are all
entitled to our own opinions.
Ask participants to gather in the centre of the open area. Direct their
attention to the "Agree" and "Disagree" signs.
Activities
Explain that you will be reading a series of value statements. After
you read a statement aloud, the participants will decide whether they
agree or disagree with the statement, or if they are unsure of their
response. Those who agree will move and stand by the "Agree" sign.
Those who disagree will move and stand by the "Disagree" sign.
Those who are unsure will remain in the middle of the room. Let
participants know that if they hear something that causes them to
change their opinion during the course of the activity, they may move
from one area of the room to another.
Read a statement out loud. Ask participants to move to the
appropriate area of the room, according to their opinion. Invite
comments from one or two participants from each location, to explain
why they have chosen to stand where they are.
The facilitator remains neutral, by not offering interpretations for the
statement that would influence participant responses. However, he or
she can share factual information to clarify matters, as needed. After
hearing a representative from each position, give participants the
option of switching positions if they wish. When participants move,
ask them what prompted their decision to change position.
Debriefing
Repeat this process until you have posed all the statements that you
wish the group to consider.
Ask the participants to return to their seats for a group discussion.
Facilitate a discussion to explore differences of opinions and values
more deeply based on the following questions.
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Exercise : Controversial Statements
Note: If time is limited, prioritize the questions you will use.
Key Discussion Questions
How did you feel during this exercise? What was it like for you?
Were there any opinions or values expressed that surprised you?
Which statements were the most controversial and why?
If you were an HIV-positive client at your facility, would you have a
different opinion about these issues?
How might attitudes and beliefs affect the way you behave toward or
treat clients?
How can we keep our own values from influencing our work in a
negative way?
How might you address some of these difficult issues in your health
care facility?
Controversial statements:
o
o
o
o
o
o
o
o
o
o
o
o
o
o
o
Women with HIV infection should not have children.
People with AIDS should be allowed to continue work.
AIDS is mainly a problem of people with immoral behaviour.
Men who have sex with men indulge in abnormal sexual behaviour.
People with HIV infection should be isolated to prevent further transmission.
It is a collective responsibility to care for people with HIV infection.
I would feel uncomfortable inviting someone with HIV infection into my house.
Surgeons should screen all patients for HIV infection before surgery.
I would feel uncomfortable discussing sexuality with a person of the opposite sex.
HIV-infected pregnant women should abort their foetus.
Males should produce an HIV-free certificate before marriage.
It is okay to isolate HIV-positive patients in a separate ward.
Since there is little we can do for a patient with AIDS, it is better to spend time and limited
resources on patients with treatable illnesses.
It is okay to reveal the HIV status of a patient to their spouse or close relatives
Health care staff should have the right to refuse to provide services if materials they need to
apply standard precautions are not available.
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Session 1.3 Communication Skills
Time: 1 h
Trainer Instructions:
Presentation 1 Slides 7- 33, presentation
Communication skills are important skills to deal with all clients but their importance increases
when it comes to communicating with people going through difficulties or crises in their lives.
Understanding the needs of HIV positive people, it is important to deal with them with respect and
make them feel safe and comfortable so that they are able to share their problems, feelings and
concerns. The more they will communicate comfortably the better possibilities of their follow ups
and adherence to treatment and further prevention will be.
Micro skills are essential for effective communication and the development of a supportive
client-care provider relationship. As a foundation, service providers and counsellors need to
develop specific micro skills. These include:
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Listening and empathy
Questioning
Silence
Non-verbal behaviour
Listening:
Good listening involves all of the following:
 Eye contact (culturally appropriate)
 Demonstrate attention, e.g. nodding
 Encouragement, e.g. “Mm-hmm”, “Yes”
 Minimise distractions, e.g. TV, telephone, noise
 Do not do other tasks at the same time
 Acknowledge the client’s feeling, e.g. “I can see you feel very sad”
 Do not interrupt the client unnecessarily
 Ask questions if you do not understand
 Do not take over and tell your own ‘story’
 Repeat back the main points of the discussion in similar but fewer words to check you have
understood the client correctly ( this is known as paraphrase, reflection of feelings,
clarification, summarise)
“You seem to be saying …………………..”
“In other words, ……….”
“You feel ………. because ……….”
“You seem ……….. What’s happening for you? What are you thinking about?”
“I wonder if you are feeling ………. because ……….?”
“Correct me if I am wrong, but ……….”
“Let me check if I have understood you correctly. You ………., is that correct?”
“What I hear you saying is ……….”
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An important component of good listening skills is the ability to convey empathy. Empathy
involves trying to understand how individual views themselves or their world. Demonstrating
empathy helps establish rapport with clients, facilitates the client felling “safe” to disclose the truth
about their feelings and circumstances. Empathy is conveyed by using all of the listening skills
indicated earlier. In particular the following techniques can be utilised:

Paraphrasing which involves restating, in your own words, the essence of what the client
has said. Paraphrasing to the client indicates to the client that you are listening and it
assists the client focus on his/her situation more clearly.
Client:
Counsellor

“I feel so helpless. I can’t get my housework done, get the children to school on
time or even cook a meal. I can’t do the things my wife used to do.”
“You are feeling inadequate about doing things you have not had to do in the past
when your wife was alive”
Reflecting emotions: This is similar to paraphrasing, except the focus is on the emotions
being expressed by the client. Reflecting emotions assists the client to become aware of
how they are feeling, and to explore their reactions to events they are describing.
Client:
Counsellor
“I don’t know what to do. Before he died I promised my husband that I would take
care of his mother for the rest of her life. But I no longer have the energy. I cannot
seem to get my self-sorted out to do anything. He knew that his mother and I did
not get along and that the situation would be miserable. Why did he die and leave
me in this mess?”
“You seem to be feeling very low and helpless right now; but at the same time you
seem to be feeling guilty and angry about your promise to your husband.”
Questioning
Questioning is an important part of counselling. It helps us understand the client’s situation and it
helps us assess clinical conditions.
When asking questions:
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DO ask one question at a time
DO look at the person
DO be brief and clear
DO ask questions that serve a purpose
DO use questions to help the client talk about their feelings and behaviours
DO use questions to explore and understand issues and to heighten awareness
DO NOT ask questions simply to satisfy curiosity - irrelevant questions may cause people
to feel pushed or reluctant to answer. Too much time may be spent thinking of questions
rather than actively listening. Too many questions will be experienced as intrusive and
similar to an interrogation.
There are essentially three styles of questions:
1. Closed questions
A closed question limits the response of the client to a one-word answer.
e.g. “Do you practice safer sex?”
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e.g. “Do you know how to use a condom?”
Closed questions may not require clients to think about what they are saying. Answers can be
brief and often result in the need to ask more questions.
2. Open questions
An open question requires more than a one-word answer.
e.g. “What difficulties do you experience in practicing safer sex?”
e.g. “How might you react if you received a HIV positive test result?”
Open questions generally begin with..”what”, “where”, “how” or “when”. They invite the client to
continue talking and to decide what direction they want the conversation to take.
3. Leading questions
Leading questions are questions where the counsellor guides the client to give the answer they
desire. These questions are usually judgemental and recommended NOT to use it:
e.g. “You do practice safer sex don’t you?”
e.g. “Do you agree that you should always use a condom?”
Silence
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Gives a client time to think about what to say.
Gives a client space to experience their feelings.
Allows a client to proceed at their own pace.
Provides a client with time to deal with ambivalence about sharing.
Gives a client freedom to choose whether or not to continue
Non-verbal behaviour:
It’s not what you say but HOW you say it!
The majority of communication is non-verbal. Counsellors need to be aware of what they
may be communicating to their clients through their non-verbal behaviour. They also
need to give attention to what is being communicated through the non-verbal behaviour
of their clients.
Non-verbal behaviour
Body Language
Paralinguistic
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Gestures
Facial expressions
Posture
Body orientation
Body proximity/distance
Eye contact
Mirroring
Remove barriers (e.g. desks)
Sighs
Grunts
Groans
Voice pitch change
Voice volume
Voice fluency
Nervous giggles
Supportive communication
Verbal
Non-verbal
Uses language that the client
understands
Uses a tone of voice similar to the
client’s
Repeats the client’s story in other
words
Looks client in the eye (as
appropriate)
Clarifies client’s statements
Nods occasionally
Explains clearly and adequately
Uses facial expressions
Summarises
Uses occasional gestures
Responds to primary message
Keeps suitable conversational
distance
Encourages: “I see”, “Yes”, “Mm-hmm” Speaks at an appropriate pace
Addresses client in a manner
appropriate to the client’s age
Physically relaxed
Gives needed information
Open posture
What impairs communication?
Lack of privacy and confidentiality
Being Judgmental
Imposing own values
Decision making for clients
Use of technical language
Interruptions within discussion
False reassurance
Speaking too quickly or too slowly
Frowning, scowling and yawning
Keeping an inappropriate distance
Looking away frequently
Using an unpleasant tone of speech
Environmental barriers or distractions
Criticizing or censuring
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Session 1.4 Activity
Time: 30 min
Trainer Instructions:
Presentation 1 Slide 34 and Participant Activity Handout:
Questioning quiz
Participant Activity Handout: Questioning quiz
1. You always practice safer sex don’t you?
Closed / open / leading
2. What are some of the difficulties that you would have using a condom?
Closed / open / leading
3. Do you take your medication?
Closed / open / leading
4. You should tell your wife shouldn’t you?
Closed / open / leading
5. When were the occasions that you shared needles?
Closed / open / leading
6. What do you know about how HIV?
Closed / open / leading
7. Do you understand how HIV is transmitted?
Closed / open / leading
8. Do you protect yourself from HIV?
Closed / open / leading
9. What are the different ways you could protect yourself from HIV?
Closed / open / leading
10. How do you clean your injecting equipment?
Closed / open / leading
11. Have you ever had a blood transfusion?
Closed / open / leading
12. Who could you talk to for support if you were to test HIV positive?
Closed / open / leading
16
Session 1.5 Counseling on treatment adherence
Adherence
Time: 25 min
Trainer Instructions:
Presentation 1 Slides 35-41 and prepare below activity
Remark: For more specific issues regarding children, please refer to Module 4.
Activity: Treatment Adherence
Purpose
To visualize how common difficulties in adherence to any treatment
are.
Duration
10 minutes
Activities






Debriefing
Ask all participants to stand
Ask them to think about times in their lives when they have been
prescribed medication and inform them that they can sit down only
if they have always taken medication exactly as prescribed
Ask those who remain standing to consider the occasion when
they failed to comply with instruction or complete a course, and to
think about why this happened
Ask each person to give their reasons for non-adherence
Try to group these experiences into the following headings:
o Beliefs about medication, e.g. “It is better I stop because the
drugs are toxic”
o Practical difficulty, e.g. “I had to have the tablet within two hours
of eating”
o Memory, e.g. “I just forgot to take it”
o Social, e.g. “I didn’t want anyone to know I wasn’t well and see
me”
o Misinformation, e.g. “My symptoms went so I thought I was
cured”
Record their responses on an overhead transparency or on a
whiteboard
Remark that clients have the same difficulties. That there are many
reasons, which contribute to non-adherence.
Information provision clearly is not enough—they are health workers
and had information but still did not adhere to their prescription.
17
Engage in an interactive discussion:
What is treatment adherence?
Treatment adherence, or compliance, broadly means the extent to which the patient follows
medical instructions in taking their medications.
Why is it important?
For the patient, poor adherence can lead to virological failure, the evolution of drug resistance
and subsequent immunological and clinical failure.
Adherence to long-term therapy for chronic illnesses in developed countries averages 50 per cent and
in developing countries, the rates are even lower.
From a public health perspective, the development of drug resistance, which causes the
medications to become less effective, or stop working all together means that the range of
treatments becomes increasingly limited and resistant infections can then be very difficult to treat.
Multi-drug resistant strains of tuberculosis are already a significant problem in many countries.
The provision of information by a physician or health care worker is not sufficient.
From a health economic perspective, poor treatment adherence increases health care costs
through increased costs of drugs and greater hospitalization of patients.
Many patients experience difficulty following treatment recommendations.
Factors affecting adherence:
The provision of information by a physician or health care worker is sometimes not sufficient. A
range of factors, from physical to psychological conditions, influences treatment adherence.
 Disease characteristics
 Treatment characteristics
 Patient characteristics
 Characteristics of the relationship between the patient and physician
Special considerations:
Pregnancy and postpartum


It is important to give particular attention to the provision of additional support for maintaining
adherence to therapy during ante partum and postpartum periods, as adherence to treatment
can be more difficult.
Potential obstacles to adherence that are unique to pregnancy include fears that antiretroviral
drugs might harm the foetus; physical changes of the postpartum period coupled with the
stresses and demands of caring for a newborn; morning sickness and gastrointestinal upsets,
which can be further compounded by antiretroviral-associated nausea and fears that
antiretroviral drugs might harm the foetus.
Infants and children
18


Treatment adherence for infants and children can be especially difficult in terms of the
requirement for adult supervision, their willingness to take medications, which may cause
discomfort and disclosure.
For antiretroviral therapy there are specific physiological, clinical, practical and social issues
to consider when HIV-infected children are treated. Counsellor’s need to explore whether
parental feeling of guilt impact adversely on adhering to medication regimes for children, e.g.
a mother who feels guilty for having infected a child may not want to see the child suffer side
effects and prematurely withdraw or reduce dose of medication.
Components of adherence counselling:
Patient education
When a physician prescribes medication, it is important that the person fully understands:
 The type of the medication
 The purpose of the medication
 The duration
 Potential side effects (many patients cease medication because of unanticipated side effects.)
 How to take the medications correctly
o The right medicines – that they are taking the right medicines for the illness. If the person
taking the medications is going to put all the medications together for each dose into
bags or pill boxes (e.g. morning doses, afternoon doses), then make sure that a record is
kept about what the medication is called, what it is for and what it looks like so that there
is no confusion if medications run out.
o The right way – that they are using the correct route of administration of the medication,
whether the medication should be chewed, swallowed, sucked, rubbed onto the skin,
injected, etc. Some medications need to be taken on an empty stomach. This means up
to 30 minutes before food or one hour after food. Others should be taken with food,
which may be during a meal, or with a snack.
o The right amount – that they are taking the correct dosage, and not to take more than the
amount prescribed (mistakenly believing that this will increase effectiveness) or less than
the amount prescribed (mistakenly believing this may make the tablets last longer).
o At the right time – that they are taking the medications at the correct times during the
day, e.g. every 4 hours. It may help to write the times down so that it is less confusing,
e.g. 8.00 am, 12.00 pm, 4.00 pm, 8.00 pm, etc.
A person with HIV may be taking several different medications at the same time – some
medications may be for HIV, for an opportunistic infection, for pain management, for symptom
relief or for other reasons unrelated to HIV. It may be helpful to write down all the medications
that are being taken, along with basic instructions on each medication.
Behaviour strategies
Other suggestions that could be made to help a person organize their medication include:
 Drawing up a medications schedule. Use a calendar or diary to help keep track of
medications that are due to be taken and when they have been taken, e.g. at the start of each
week write down when the doses are due and then tick off each time they are taken.
 Dividing up the correct amounts at the start of each day or each week. They could divide the
doses into separate containers, e.g. cups or plastic bags, and label them. It may be helpful for
a health care worker to help the first time this is done.
 Taking the medication at the same time of day each day (depending on the instructions about
when the medications need to be taken).
19




Incorporating taking medications into other activities that are part of the daily routine, e.g. with
a meal or before going to work (depending on the instructions about when the medications
need to be taken).
Planning ahead for when more medication is needed so that the person taking medications
does not miss doses because they have run out.
When travelling, taking medications along too and taking extra in case some are lost.
Make taking medication a priority in the day.
Behaviour modification






Skill building and reinforcement
Becoming more organized
Tools to assist self-management
Appeal to the feelings and emotions of the patient; make them feel that they as an individual
can make a difference
Utilize social supports, counselling, home visits
Enlist the help of family members where appropriate
Problem-solving counselling for adherence issues
Clients can be taught to apply structured problem solving to adherence problems raised. This is
particularly useful when the client discusses practical constraints to adherence
Session 1.6 Role Play
Time: 20 min
Trainer Instructions:
Presentation 1 Slide 42
Client informs you she avoids taking medication whilst at work as she has to take lunch with her
colleagues and she does not want others to know she is ill. She is required to take medication
with her meals so this is a problem for her. The counsellor and client work collaboratively to
brainstorm and evaluate a range of options related to addressing the problem. The counsellor
then assists the client in developing a personal adherence plan and teaches any necessary
behavioural skills required.
20
Module 2- General Care and Support Principles and Strategies
Objectives:
 Define important HIV care concepts including palliative care
 Demonstrate the commitment to provide quality, respectful care to PLHIV and their
families
 Explain the cycle of HIV disease and important needs which PLHIV and families
will have over the course of disease
 Describe the contents of the PLHIV self care and NGO handbook
 Provide basic care and support to people living with HIV and their families
including:
o Self-care and positive living teaching
o Infection prevention support
o Nutrition advice
o Care for common symptoms of HIV (e.g. pain, fever, diarrhoea)
o Emotional and social support
Total Time for module: 3 days (approximately 22 hours)
Methods:







Discussion
Presentation
Role Play
Group work
Group visualization
Exercise
Energizers
21
Content:
Training overview
15 min
Session 2.1.1 HIV, its Impact, and human needs
Session 2.1.2 Impact of stigma & discrimination on us and our work
45 min
60 min
Session 2.2.1 What is care and support? Strategies in care and support
Session 2.2.2 What are the qualities of a good care and support worker
1:45 h
1:35 h
Session 2.3.1 Staying healthy and strong
Session 2.3.2 Positive living and self care
Session 2.3.3 Nutrition and Exercise
Session 2.3.4 Hygiene and infection prevention in the home
Session 2.3.5 Important medicines in OI prevention and treatment
45 min
45 min
1h
1:30 h
1:50 h
Session 2.4.1 Introduction to symptom care
Session 2.4.1a Managing pain at home
Session 2.4.1b Managing fever, diarrhoea, constipation, nausea and
vomiting in the home
Session 2.4.1c Managing cough and difficulty breathing
Session 2.4.1d Managing skin and mouth problems
Session 2.4.2 Danger signs and making referrals
30 min
1:15 h
1:45 h
Session 2.5.1 Emotional and spiritual support for PLHIV and their caregivers
Session 2.5.2 Social support needs and referral for PLHIV and their families
1h
1:20 h
1:30 h
1:50 h
30 min
Session 2.1.1 HIV, its Impact, and human needs
Time: 45 min
Participants will be able to:
 List ways in which having HIV may effect them and others in
Pakistan
 Describe human needs
 Explain how human needs and needs of PLHIV are the same
Trainer Instructions:
Presentation 2.1.1, Handout 2.1.1
Methodology:


Plenary brainstorming
Small group work
Materials needed:
 Drawing of a large tree on butcher paper before the session
22




Coloured paper cut into leaves
Markers
Tape
Rights cards
Handout 2.1.1:
 Human needs
Preparation:
 Draw a large tree with four branches representing different forms of human needs. Write
each of the human needs in one of the branches.
 Cut coloured paper into large ‘leaves’ which participants will stick onto the tree.
 Ensure tape is cut and ready for participants to use to stick leaves on the tree.
 On coloured cards, write down different types of rights of PLHIV. There should be enough
for each participant.
Activities:
1. In plenary, ask participants to brainstorm what human needs are. Start by defining human
needs: what we need to survive and thrive – what we need for a good life. Write down ideas
listed by participants on flipchart paper at the front of the room in no particular order. Probe as
needed in order to gather a collection of human needs, which represent the four categories of
human needs, physical, emotional, social, and spiritual.
2. Next, ask participants if the human needs can be categorized. Help participants to define and
organize the brainstormed human needs into physical, emotional, social, and spiritual needs.
Provide participants with the HIV and Human Needs handout.
3. In groups or individually, ask participants to write down on ‘leaves’ the needs that are most
important to them to have a good life. Then ask participants to place these cards on a tree of
human needs, which has four branches representing the four human needs.
4. Once all leaves have been placed on the tree, bring participants up to look at what people
wrote. While all participants are looking at the human needs tree ask them if the needs of
PLHIV are different from their needs or other people’s needs. Stress the point that PLHIV
need all the same things that others need in order to have a good life and that is why CHBC
focuses on providing holistic care. It recognizes that clients and families have interconnected
needs that all need to be assessed and addressed as best as possible. Note that these needs
apply to both adults and children living with and affected by HIV.
5. Tell the participants that the trunk symbolizes PLHIV and their family/loved ones, and the four
branches symbolize physical needs, spiritual needs, emotional needs, and social needs.
Provide examples of how needs are interconnected - if we are emotionally sad, it may effect
us physically through lack of a desire to eat or inability to sleep. When we are sad we may
pull away from friends and family causing social isolation and suffering. We may also feel that
our life has no meaning and that ‘God has abandoned us’ causing spiritual suffering.
6. Thank participants for their thoughtful work in developing the human needs tree and
discussing the rights if PLHIV and their families, then summarize and close the session Leave
the human needs tree up on the wall since it will be referred to repeatedly throughout the
training.
23
Notes for the facilitator:
Introduction
All humans need essentially the same things in order to live fulfilling lives. They need food, water,
shelter, love, respect, friends, work, and spirituality. Basic human needs are the same for all
human beings whatever their culture, race, sex, age, disease, or behaviours.
People with HIV are no different; heir needs are the same as everyone else’s. But they may need
more support in fulfilling some needs than others (physical needs, access to affordable health
care). The role of the HIV care provider is to recognize the holistic needs of PLHIV and to
address them through HIV care services. By assessing and addressing clients’ physical,
emotional, social, and spiritual needs we will better help them achieve quality of life.
There are four domains of human needs:
Physical: These include the needs of the body related to physical survival. Needs such as food,
water, sleep/rest, medicine, health care, and shelter are all vital for the physical wellbeing of the
human body.
Emotional: These needs related to the internal emotions and feelings of people. Humans need to
feel loved, respected, and in control of their lives. If they do not adequately feel these things, they
may feel sad, lonely, or depressed. Emotional wellbeing of humans directly impacts the physical
wellbeing of people.
Social: Humans need to interact with other people. We need social contact with family, friends,
and people in our communities. Social interaction helps humans to gain a sense of being part of
something. Poverty, discrimination, and violence are social problems; they can cause people’s
quality of life to be reduced. People need to have economic stability, to be treated fairly and with
respect, and to live without fear of violence.
Spiritual: Gives a deeper meaning to life and helps explain things that we cannot otherwise
explain through our human experience. Spirituality can help give meaning to life and a sense of
peace with the world and with ourselves.
Summary
Human needs are all interrelated and essential to quality of life. PLHIV have the same needs and
rights as all humans, they are no different. Therefore, HIV caregivers need to approach their
clients holistically, assessing all their needs and to the best of their ability helping PLHIV and
families to address these needs.
24
Session 2.1.2 Impact of stigma & discrimination on us and our work
Time: 1 h
Participants will be able to:
 Explain the difference between stigma and discrimination
 Reflect on when they have experienced S&D
 Better empathize with people with HIV in Pakistan
 List actions that can be done to address S&D in the
community
Trainer Instructions:
Presentation 2.1.2, Handout 2.1.2, Activity 2.1.2
Methodology:




brainstorming
mini-lecture
testimonial
case study
Materials needed:



flipchart paper
coloured markers
case studies
Handout 2.1.2:


Stigma and discrimination
Activity
Preparation:

Meet with the guest speaker before the session and brief on the session and the focus of
the talk. Ensure the speaker is comfortable with speaking publicly.
Activity description:
1. Walk up to a participant and say, “I don’t like you because you are wearing blue. Please leave
the room!” (Try to choose a colour that at least four participants are wearing in order to make
the point. Any colour is fine.) Now tell the other participants that anyone wearing blue is not as
good as the people wearing other colours because blue is a bad colour and therefore means
that they are bad people. If anyone asks you why blue is bad, say “Because I say so!”
2. Once all the people wearing blue have left the room, ask the remaining participants how this
makes them feel. Also ask them if there is a name for what you are doing.
3. After this, ask the people wearing blue to return to the room. Ask them how being named as a
bad person because of the colour of their clothes made them feel. Have the participants
discuss and process their feelings about this activity for a few minutes. Ask the participants to
give a name to what you were doing. Reassure all participants that all colours are fine and
25
that you made a mistake thinking that people wearing blue shirts were not as good as people
wearing other colours.
4. Define ‘stigma’. Ask participants to define stigma, then show them the definition using the
Powerpoint presentation. This can include stigma related to age, gender, economic status,
colour, or where people live (countryside versus city). Ask participants if they know what selfstigma is. Define self-stigma.
5. Define ‘discrimination’. Ask participants if they can explain what discrimination is. Show
participants the definition of discrimination. Explain that discrimination is ‘enacted stigma’,
where people act on stigma by saying, doing, or not doing something based on stigma. Then
ask for examples of the forms of discrimination based on stigma related to age, colour,
religion, drug use, disease, or socio-economic status.
6. Ask participants to think about a time when someone discriminated against them or judged
them, and how it felt? Now ask them to think about a time when they judged, discriminated
against, or stigmatized someone because of their looks, their age, gender, or disease. How
did that make them feel? How did they think it made the other person feel? Then ask
participants what the effects of ‘S&D’ are on people with HIV, on their families, on
communities, and on the national response to HIV.
7. Introduce a guest speaker with HIV who can share their perspective on HIV and stigma and
discrimination, its impact on them and people they know, and what they have done to cope
with stigma and discrimination. Facilitate a Q&A after the guest speaker concludes their talk.
8. Finally, provide participants with four case studies on stigma and discrimination in four
different contexts and what, as HIV care providers, they would do to address the problem.
One case study focuses on self-stigma, one on discrimination in the health care setting, one
in the family, and one in the community.
9. Invite each group to present what they would do to address stigma and discrimination.
10. Conclude main learning points and close the session.
Notes for the facilitator:
What is stigma?
Stigma is when people think that some people are bad for some reason that is not true. This
could be based on how they look, what religion they are, or what disease they have. For example
some people may think that:





Short people are funny looking
Country people are slow
City people are not trustworthy
People who take drugs are sinners
People with HIV are bad people who deserve HIV (No one deserves HIV!)
But these are merely judgments or opinions and not facts!
26
Stigma creates false differences between people. It points out, or creates differences based on,
arbitrary judgments and results in ‘us-and-them’ type of thinking. When people stigmatize it can
give them a sense of power because it makes an artificial division between people. “I am better
than her because I…” Stigma leads to dehumanizing people. This can result in discrimination
including abuse and ill-treatment.
What is discrimination?
Discrimination is when people act on the stigma they have for another person. It can be
something people say or do (or don’t do), such as:




Preventing children of PLHIV from going to school
Gossiping about or pointing at PLHIV
Ignoring or staring at family members of PLHIV
Other children teasing and making fun of children of PLHIV
…and many, many more examples.
Summary
Stigma and discrimination can be very destructive to people with HIV and their loved ones. We as
humans all experience, at some point, forms of stigma and discrimination. But some of us may
experience more stigma than others, as with PLHIV. If we as HIV care providers work to
normalize HIV in the community and build empathy for PLHIV, we can help to reduce HIV-related
stigma and discrimination and improve the quality of life of our clients.
Further information:
People Living with HIV Stigma Index
HIV related stigma and discrimination are widely recognized as barriers to accessing HIV
treatment and care services. Keeping all this in consideration, the International Planned
Parenthood Association (IPPF) and the Joint United Nations Programme on HIV & AIDS
(UNAIDS), in collaboration with their partners, the Global Network of People living with HIV &
AIDS (GNP+) and the International Community of Women living with HIV & AIDS (ICW) have
embarked on a participatory process to develop an index which scientifically measures the stigma
and discrimination experienced by People Living with HIV. Here in Pakistan the Association of
People Living with HIV is going to work on this very important initiative.
It is anticipated that the People Living with HIV Stigma Index will increase the understanding of
how stigma and discrimination is experienced by people living with HIV, and the evidence gained
will contribute to shaping future programmatic interventions and policy change in support of
people living with HIV. This tool will also measure and detect changing trends in relation to stigma
and discrimination experienced by people living with HIV. In the initiative, the process is just as
important as the product. It aims to address stigma relating to HIV while also advocating on the
key barriers and issues perpetuating stigma - a key obstacle to HIV treatment, prevention, care
and support.
27
Activity 1
Case Study 1 - Naseer
Naseer was diagnosed with HIV one year ago. He stays home and does like to go out much. He
rarely talks to his old friends. Even though he’s generally healthy, he does not feel much like
eating. He seems very sad. In your group, please answer the following questions:
What is the main problem in this situation?
What can you, as the home-care team, do to help Naseer?
Case Study 2 - Husna and Ghazala
Husna has HIV. She was diagnosed two years ago after her husband died from HIV. Her
daughter Ghazala is 7. Ghazala has been forced out of school. The school teachers and parents
think she will give HIV to the other students. In your group, please answer the following
questions:
What is the main problem in this situation?
What can you, as the home-care team, do to help Husna and Ghazala?
Case Study 3 – Hussein
Hussein was referred to the hospital because he had a very, very bad pain. They admitted him in
the hospital but he noticed they gave him different coloured hospital clothing than what they gave
the other patients. The hospital put him in a room in the back of the hospital with other people
who had HIV. They wore gloves even when they were just coming by to look at patient medical
charts. Hussein felt terrible about how he was being treated and wanted to go home.
What is the main problem in this situation?
What can you, as the home-care team, do to help Hussein?
Case Study 4 - Mahmood
Aisha has a son, Mahmood, who has HIV. He was diagnosed about two years ago. When you
meet Moses his is very sad. His mom is scared of him and makes him sleep in a separate part of
the house. During mealtime she gives him separate plates, utensils, and cups.
What is the main problem in this situation?
What can you, as the home-care team, do to help Mahmood?
28
Session 2.2.1 What is care and support? Strategies in care and support
Time: 1:15 h
Participants will be able to:
 Define care and support and its importance
 Define palliative care and why it is such an important part of
HIV care
 Describe different important forms of care: out-patient, inpatient, CHBC, hospice care, peer support
 Describe importance of the continuum of care
 Understand strategies in care and support
Trainer Instructions:
Presentation 2.2.1
Methodology:


Brainstorming
Short presentation
Materials needed:


Flipchart paper
Coloured markers
Handout:

only presentation
Preparation:

NA
Activities:
1. Introduce the overall content of Section 2: HIV care and support - laying the foundation.
Explain that the focus of Section 2 is to provide HIV caregivers with detailed information on
what HIV care entails and what qualities are important for an HIV care provider.
2. Next, introduce the learning objectives of session 2.1, then begin the Powerpoint presentation.
Ensure the presentation is interactive by asking participants questions and generating
discussion throughout.
3. If there is time, do group work on brainstorming different aspects of HIV care and support
including (1) what types of care and support services are essential to PLHIV in Pakistan (2)
what services are in place and what is missing and (3) is there a CoC in place. If so, how is it
organized, if not what could be done to establish one?
4. Summarize main points and close the session.
Notes for the facilitator:
What is HIV care and support?
HIV care and support consists of addressing the following needs of PLHIV:
29
 Prevention and health promotion
o Food security and nutrition
o Hygiene and infection prevention
o Self-care skills including knowledge in how to make medicines correctly
o Prevention and treatment of opportunistic infections
 Palliative care:
o Treating pain, other symptoms and medicine side-effects,
o Caring for depression and anxiety,
o Providing social support from family, friends and community
o Linking PLHIV with spiritual support
o Giving end-of-life care
 Socio-economic support
o Economic support and livelihoods
o Housing support
o Legal assistance
o Care for OVC
However, the list of care and support services will vary based on what PLHIV need in a given
community.
What is palliative care?
Palliative care is a very big part of HIV care and support. Palliative care focuses on addressing
physical, emotional, social, and spiritual suffering in people with life-limiting illness such as HIV
and cancer. The source of suffering may change over time and will be different for each person.
Suffering may be from an opportunistic infection, from depression, from fear of disease and dying,
from worries about what will happen to the family in the future, from medicine side-effects, or from
fears that ‘God no longer loves them’.
According to the World Health Organization WHO (2002), “palliative care is an approach that
improves the quality of life of patients and their families facing the problems associated with lifethreatening illness through the prevention and relief of suffering by means of early identification
and impeccable assessment and treatment of pain and other problems, physical, psychosocial,
and spiritual.”
Palliative care is offered from diagnosis of a life-limiting illness through death and continues with
bereavement support and care for surviving family members. Palliative care services should be
integrated and provided within out-and in-patient services, hospice and through community and
home-based care programs.
Pakistan does not yet have national guidelines on palliative care for HIV. However, there are very
good palliative care services available for people with cancer which can be adapted to HIV.
HIV care services
There are five very important forms of HIV care for PLHIV. These are:
1. Out-patient care: Service usually based in a hospital where PLHIV receive their routine
care including palliative care, prevention and treatment of OIs and ART. The OPC is
usually the ‘hub’ of care, where most HIV care services can be centralized to ensure ease
of access for PLHIV and their families.
30
2. In-patient-care: Until there is universal access of ART, not all PLHIV will be able to
benefit from treatment and will need in-patient care at times during the course of disease.
Many PLHIV are diagnosed with HIV late and will also need to be hospitalized. Those on
ART, may suffer from immune-reconstitution syndrome, OIs or other diseases such as
hepatitis which may lead to hospitalization. In-patient providers need to be trained in HIV
care and have access to essential medicines to treat common OIs and co-morbidities.
3. Community and home-based care (CHBC): Community and home-based palliative care
consists of care that responds to the physical, social, emotional, and spiritual needs of
PLHIV (or other people with life-limiting illnesses, or disabilities) in the home and
community environment. It can include teams which care for PLHIV in the home or
community-based day care centres. It focuses on building the skills and knowledge of
PLHIV and their families in caring for themselves so they are able to live as independently
as possible, and in actively linking them to needed services such as ART, counselling,
income generation assistance, and child care. CHBC includes PLHIV self-care, care
provided informally by family/loved ones, informal visits from peers, neighbours and/or
formal visits by trained HIV caregivers (which may include nurses, PLHIV, and health
assistants).
4. Hospice: When PLHIV are homeless or their families are not able to care for them,
hospice care may be the only option for PLHIV who are very sick or at the end of life.
Good hospice services actively ask about and control for pain using common analgesics
including opioids such as codeine and morphine (rarely available in Pakistan) to control
moderate to severe pain. In Pakistan codeine is available in combination with
Paracetamol (called Diagesic and Deprogesic) but stronger opioids such as Tramal or
Nalbin are only available in clinical/hospital setting. Other symptom control is also
essential as is providing emotional support and helping PLHIV prepare for death.
5. Peer support: Wherever there is HIV there are support groups or NGOs run by PLHIV to
provide counselling and support and other services to members. The range of services
may vary but the care provided is vital to the wellbeing of PLHIV. Receiving support from
people who are in a similar situation as you is irreplaceable and make a tremendous
difference in helping PLHIV to accept their diagnosis and life with hope.
What is the Continuum of Care?
The CoC is an organized network of services provided by different organizations which together
add up to a holistic package of care. CoCs are led by coordination committees which include
PLHIV, government service providers, NGOs and communities who work together in a given
locality to guide the development of a network of services. This committee can develop common
referral systems, indicators, reporting and quality control structures of all participating services to
ensure they are as efficiently linked together as possible.
There are very successful models of the continuum of care in Asia including Cambodia, China,
Nepal, Viet Nam and Thailand. FHI and WHO have produced an excellent toolkit to guide
implementers in how to develop a national or local CoC in Asia (www.fhi.org).
31
Session 2.2.2 What are the qualities of a good care and support
worker?
Time: 1:35 h
Participants will be able to:
 Reflect on care and support principles and ethics
 Describe the importance of the commitment to confidentiality
and quality care that all workers should sign
 Explain the qualities of a good care and support worker
 Describe how CHBC workers should support:
o
o
o
o

Positive living and self-care through teaching new skills and
empowering clients using the PLHIV book
Provision of voluntary care to PLHIV (only provide care services
to PLHIV who ask for them)
Client confidentiality
Self-reliance of clients/family
Advocacy with their clients to access services
Trainer Instructions:
Presentation 2.2.2, Handout & Activity 2.2.2
Methodology:
 brainstorming
 discussion
 case study and role-play
Materials:



flipchart paper
coloured markers
case studies
Handout 2.2.2:


Commitment of Confidentiality and Quality Care
Activity
Preparation:

Ensure tools and materials for the role-plays are available for participants (e.g. floor mat,
etc).
Activities:
1. Start the session by asking participants to close their eyes and think about the last time they
felt very sick. What did it feel like to be that sick? Were they frustrated, sad, or reliant on the
help of others? When they felt that sick, who did they want to care for them? What qualities did
they want from their caregiver? Did they want them to be respectful, comforting, helpful?
2. Ask participants to open their eyes and provide responses to these three questions:
a. What did it feel like to be that sick?
32
b. Who did they want to provide them with care?
c. What types of attitudes and skills did they want from their caregiver?
Write participant responses on flipchart paper. Connect points raised to the HIV care
service principles discussed in the previous session.
3. How ask participants to summarize what the important qualities are for an HIV caregiver.
Provide the handout which summarizes key skills needed to be a good caregiver and highlight
any items which were not previously mentioned.
4. Now ask participants to brainstorm who can be a HIV caregiver. Say that anyone can become
a HIV caregiver if they are willing to be trained, are dedicated to the work, and have the time
available for the work. With a set of diverse skills and experiences represented in a HIV care
(such as a health care worker, PLHIV, social worker, or religious leader), better care will be
available to the client.
5. In groups, ask participants to review the Commitment to Confidentiality and Quality Care.
State that all organizations providing HIV care should consider their staff and volunteers
signing a commitment to confidentiality since it is paramount that client confidentiality be
protected.
6. Next, introduce the role-plays to the participants and provide each group with one case study
to evaluate and then act out.
7. After each role-play, facilitate a discussion with participants about what they agree or disagree
with. Steer participants towards discussion on the main issues included in the case studies,
confidentiality, quality care, and the voluntary nature of services.
8. Conclude the session by reviewing the main elements of a good HIV caregiver.
Notes for the facilitator:
A. Qualities of HIV caregivers






Respectful and trustworthy: Treat clients and family members with dignity and create a
trusting environment between them.
Skilful: The HIV caregiver should be skilful in providing palliative care and support based
on the training and supportive supervision received by the team leader and program
supervisor.
Respectful of client confidentiality: Keep client’s information confidential. Files are locked
and only certain people have access to them. Code numbers are used on files instead of
names.
Respectful of client choice: Never visit a client unless the PLHIV ask for the HIV caregiver
to visit their home. Only provides CHBC service to clients who ask for it.
Non-judgmental: Do not judge the client for who they are of what they have done. Show
acceptance and support.
Able to listen actively: Show that they are listening to the client and family members about
their needs, concerns, and worries.
33









Able to assess the needs of the whole family: The CHBC team provides care to the client
within the context of their family. This includes assessing and helping to address the needs
of family members to improve the situation of the client and family as a whole.
Able to motivate and empower client and families: Motivate and empower the client and
family; focus on building knowledge and skills in self-care and self-reliance.
Able to advocate for their clients: Advocate for clients, try hard to link client and family with
appropriate services, and fight stigma to the best of their ability.
Able to problem solve: Help and support clients and families to make their own decisions
when problems arise.
Empathetic: Empathize with the client and family in order to better understand the situation
faced by them.
Consistent: Provide ongoing support; do not abandon a client or visit infrequently when the
client is in need of more frequent support.
Knowledgeable: Keep up to date on knowledge about HIV and AIDS, care and treatment.
Committed: Dedicated to providing the best possible care to clients.
Able to work at the community level: Able to develop close relationships with people in the
community; have a sense of appropriate dress and behaviour in the communities in which
they work.
1. Roles and responsibilities of PLHIV
i. Learn as much as they possibly can about HIV and how to keep themselves healthy.
ii. Identify their primary and alternative caregiver.
iii. Actively participate in the care process.
iv. Choose where s/he wants to receive care, particularly during the last stages of disease.
v. Decide if they want to have CHBC or other services.
vi. If a parent, plan for the future of their children including where they will live. If appropriate,
write a memory book to provide their family/children with family history.
vii. If appropriate, write a will or complete a statutory Declaration Form signed by a legal
authority.
viii. Identify own spiritual/pastoral needs.
ix. Take personal responsibility to prevent further transmission of HIV to others.
x. If interested, participate in a PLHIV support group.
xi. If interested, provide counselling and support to others with HIV.
2. Roles and responsibilities of family and friends
i. Learn to accept and adjust to the situation without blaming or isolating the loved one with
HIV.
ii. Learn about how to provide care and identify when there are danger signs that indicate
need for immediate referral to the hospital.
iii. Accept help if struggling to provide care.
iv. Involve the PLHIV in all care activities and other family activities without discrimination.
v. Help the PLHIV to prepare for death if they are approaching the end stage.
vi. Assist in identifying a caregiver for their children if needed.
vii. Encourage and help the PLHIV to write a will.
viii. Remember that just being present and loving is a major source of support.
3. Role of the health facility
i. Make initial diagnosis.
ii. Provide respectful, high-quality care.
iii. Make appropriate prescriptions and provide adherence support.
34
iv.
v.
vi.
vii.
Prepare PLHIV and family for home discharge.
Prepare the family caregiver for the caring responsibility at home.
Help identify psychological and social needs.
Care for terminally ill PLHIV if they prefer to die in the hospital.
4. Role and responsibility of community
i. Be empathetic and compassionate.
ii. Educate neighbours on HIV transmission and prevention.
iii. Fight stigma and discrimination.
iv. Advocate for the rights of PLHIV.
v. Support households affected by HIV through identifying resources and providing moral
support.
vi. Volunteer to work with HIV caregivers.
vii. Arrange for referral transportation when required.
viii. Mobilization of community resources.
5. Role of the government
i. Create a supportive policy environment for CHBC.
ii. Develop policies and guidelines.
iii. Develop and maintain standards of care for CHBC.
iv. Provide/coordinate training and supervision of HIV caregivers.
v. Provide drugs and commodities on a routine basis for HIV caregivers to prevent stockouts.
B. What are the core principles of HIV care service delivery?
The following are fundamental principles that HIV providers need to consider in order to provide
respectful, confidential, and appropriate services to PLHIV and their family/loved ones:
General Principles
1. Use of services is voluntary: Services are only provided to those who request them; providers
respect the individual right of someone living with HIV to choose whether they would like to
receive the service. PLHIV and families have the right to continue or discontinue services as
needed.
2. Part of the Continuum of Care: All HIV care services need to be linked together to ensure
PLHIV have optimal access to essential care.
3. Service provision is based on need: HIV care services are appropriate to the population and
attempt to support PLHIV and families (within available resources), and meet their expressed
needs. Programs conduct needs assessments with affected community members to
determine the content and style of services provided, and to map other available services to
the HIV care service could link clients.
4. Promotion of self-reliance: They work with clients and family to support them in identifying
ways to remain independent, continue working, to live with dignity, and respect- this also
includes positive prevention. HIV care providers facilitate opportunities for clients and families
to learn how to manage HIV, how to live positively, and how to access essential services.
5. Family-centered care: HIV providers care for their client within the context of their family. This
includes assessing and helping to address the needs of family members, including children.
6. Client advocacy: They network to learn about what essential services exist and push to link
their clients/families with these services as needed. They work to address stigma in the home
and community environment.
35
7. Client confidentiality: Client information is kept confidential at all times. Providers take an oath
of client confidentiality. Client records are managed by a limited number of authorized staff;
files are locked and kept in a secure location.
8. Provide optimal care within resources available: Programs need to balance numbers of clients
in need of services with resources available. Programs need to be clear about the number of
clients they can reasonably support given resources available to the program.
9. HIV care services should reflect a balance of people living with HIV, health care workers, and
others involved in HIV care services to optimize the benefits of community and home-based
care. Health care workers need to respect and listen to PLHIV, and PLHIV need to support
health care workers.
C. Code of confidentiality
It is very important that all CHBC providers, supervisors, and others directly involved in CHBC
sign a commitment to confidentiality and quality care. This helps to reinforce their responsibility in
protecting PLHIV and their families.
Activity 1
Case Study 1
You, the home-based care team, have just left a client’s home after providing care to them. As
you leave the house, you stop at a small shop to buy a drink. The shop owner and some local
people begin to ask you about the client you just visited. They ask you, “We saw you just come
from Fatima’s house. Is it true that she has HIV? That’s what everyone says. Tell us what’s going
on.” The shop owner says, “Yes, tell me if she has HIV. I need to know because I buy vegetables
from her mother in the market and if Fatima has HIV then the vegetables will probably be
poisonous.”
As the home-care team, how can you manage this situation? What can you say and do to
protect the confidentiality of your client without raising the curiosity of the local people
and at the same time without revealing the HIV status of your client?
Please spend 10 minutes to discuss this case study, and then prepare a five-minute role-play.
You can use all or some of your team members.
==============================================================
Case Study 2
A new home-care team comes to ask an old home-care team for help. The two teams meet and
discuss together the situation of the new home-care team. The new home-care team explains
that they tried to provide good services to PLHIV but they were not successful. They explain that
the clinic gave them a list of all the names of PLHIV and they then went to each home to provide
them with home-based care services. But they were surprised when not all PLHIV and their
families were happy with the visits; they told the home-care team to leave them alone. The new
home-care team does not know what to do because they feel like they are trying hard to support
people with HIV. They ask the old home-care team for advice.
As the home-care team, what advice and support can you provide to the new home-care
team? What would you suggest the new home-care team do in order to provide better
services?
36
Please spend 10 minutes to discuss this case study and then prepare a five-minute role-play. You
can use all or some of your team members for the role-play.
==============================================================
Case Study 3
You are a home-based care team leader. You work at the district HIV out -patient clinic (OPC)
and go out with home-care team members on home visits on a regular basis to help them to
improve their skills. While supervising a team during a home visit of a client who is in chronic
pain, you notice that the home-care team does not ever teach the PLHIV and family in how to use
the pain medicines and other techniques to manage the pain even though the PLHIV and family
keep asking the home-care team for more information about how to better manage the pain at
home. The role-play includes the home visit and feedback provided by the CHBC team leader.
As the CHBC team leader, how can you provide feedback to your team in a professional
and respectful way so they understand why it is so important to teach self-care skills so
PLHIV and family learn how to take care of themselves in the home and become more selfreliant. Use the self-care book as an example of tools the CHBC team can use in teaching
new knowledge and skills to PLHIV and family. However, please keep in mind that for
severe pain management, referral to a hospital is the most appropriate step to take.
Please spend 10 minutes to discuss this case study and then prepare a five-minute role-play. You
can use all or some of your team members.
37
Session 2.3.1 Staying healthy and strong
Time: 45 min
Participants will be able to:
 Explain the impact of HIV on the immune system
 Define the window period
 List the clinical stages of HIV disease
 Define opportunistic infection
 Describe five things that PLHIV can be do to keep their
immune systems strong
Trainer Instructions:
Presentation 2.3.1, Handout 2.3.1
Methodology:


Brainstorming
Short presentation
Materials needed:



Flipchart paper
Coloured markers
LCD and Computer
Handout 2.3.1:

WHO clinical stages
Preparation:

On flipchart paper, prepare the HIV and the immune system graph so they can be placed
on the wall and referred to throughout the training.
Activities:
1. Introduce the session by stating that in addition to ART there are many things that PLHIV and
HIV care providers can do to promote strong immune function in their clients. Ask participants
to share their ideas of what they think can be done. Write responses on flipchart paper.
2. Begin the presentation giving special attention to describing the course of HIV disease.
Provide an explanation on the immune system while referring to the HIV graph. Place the
immune system and HIV graph drawn on flipchart paper on the wall, as you will need to refer
to it several times over the course of the presentation and training.
3. After the presentation, facilitate a Q&A on HIV and its impact on the immune system.
4. Conclude the session by summarizing the 10 major things (in addition to ART) that can keep
people with HIV living as healthy as possible for as long as possible. Tell participants that
these 10 areas will be reviewed in greater detail over the next few days of the training:
38










positive living and self-care skills
nutrition, hydration, and exercise
hygiene and infection prevention
HIV/STI prevention
TB screening and treatment: ensure all PLHIV clients are screened for active TB once
a year, and if they have active TB, complete their treatment
Cotrimoxazole prophylaxis: ensure all PLHIV are assessed for eligibility
regular health check-ups
symptom care and treatment of opportunistic infections: refer clients on time to the
clinic
medicine adherence
counselling: provide emotional support and encouragement
Notes for the facilitator:
The immune system and HIV
What is the immune system?
 Every healthy person has a strong body defence against diseases. This defence system is
called the immune system. White blood cells play an important role in defending the body
against all kinds of diseases.
 A CD4 cell is a type of white blood cell and is the main part of the immune system responsible
for fighting invading infections and germs.
What is HIV?
 HIV (Human Immunodeficiency Virus) is a germ that enters the human body, where it breeds
rapidly and multiplies.
What does HIV do to the immune system?
 When a person is infected with HIV, the virus will start to attack the immune system.
 During the first years, the immune system - although weakened a bit by HIV - still functions
well. The infected person will have no symptoms or only minor symptoms like skin diseases,
some weight loss, or repeated sinusitis. People often do not know they are HIV-positive at this
stage.
 After several years, the person's immune system becomes very weak and vulnerable to
diseases that it would normally fight off.
 These diseases are called opportunistic infections because they take advantage of a
weakened immune system to cause disease.
 It usually takes around five to ten years after infection before the person becomes very sick
(AIDS) if he/she is not taking antiretroviral therapy (ART).
 HIV attacks mostly these CD4 cells. This is why the number of CD4 cells is a good way of
checking how well your defence is working.
39
What happens to CD4's?





CD4 cells decrease in number as HIV progresses.
As CD4s decline, the risk of getting opportunistic infections increases.
People with a good immune system have CD4 counts between 450 and 1500.
The total lymphocyte count includes all of the white blood cells and gives you an idea how the
patient is doing, but is not as exact as a CD4 count.
A total lymphocyte count over 2,000 may be considered OK and one less than 1,200 may
indicate that the person is at risk of contracting opportunistic infections.
Co-Factors for Progression
STI's
TB
Other Infections
Drug Use
Smoking
Alcohol Abuse
Re-infection with HIV
Stress and Isolation
Depression and Anxiety
Viral
Load
Start of Treatment
Start to see OI's
Tuberculosis
Kaposi's Sarcoma
Shingles
Diarrhea
Cervical Cancer
and
CD4
count
CD4
count
CD4 = 20
200
(may start at
higher level
if AIDS-defining illness)
acute illness/
seroconversion
(2 - 10 years)
Time
infection
40
Viral
Load
In general, we can say
 When the number of CD4s has decreased below 450, the person may start to have some
opportunistic infections.
 When the CD4 has decreased below 200, the person is at risk for very serious opportunistic
infections.
What are opportunistic infections?




All people, whether they have HIV or not, carry germs within them. These include bacteria,
viruses, fungi, and other germs that our immune systems keep under control.
If our immune system is weakened it can no longer suppress these germs and they can make
us sick. We are also more vulnerable to catching new germs that our immune systems would
normally not let into our bodies at all.
These are known as opportunistic infections, or ‘OIs’.
OIs can include many different types of diseases that are commonly known, such as TB,
candidiasis, pneumonia, and others that are less commonly known, such as cryptococcus
meningitis and toxoplasmosis.
What are 10 things that can be done in addition to ART to keep the immune system
as strong as possible for as long as possible?
1.
2.
3.
4.
5.
Positive living and self-care skills.
Nutrition, hydration, and exercise.
Hygiene and infection prevention.
HIV/STI prevention.
TB screening and treatment: ensure all PLHIV clients are screened for active TB once a
year, and if they have active TB, complete their treatment.
6. Cotrimoxazole prophylaxis: ensure all PLHIV are assessed for eligibility.
7. Regular health check-ups.
8. Symptom care and treatment of opportunistic infections: refer clients on time to the clinic.
9. Medicine adherence
10. Counselling: provide emotional support and encouragement.
WHO Clinical Staging
CLINICAL STAGE 1
 asymptomatic
 persistent generalized lymphadenopathy
CLINICAL STAGE 2
 moderate unexplained weight loss (under 10% of presumed or measured body weight)b
 recurrent respiratory tract infections (sinusitis, tonsillitis, otitis media, pharyngitis)
 herpes zoster
 angular cheilitis
 recurrent oral ulceration
 papular pruritic eruptions
 seborrhoeic dermatitis
 fungal nail infections
41
CLINICAL STAGE 3
 unexplained severe weight loss (over 10% of presumed or measured body weight)b
 unexplained chronic diarrhoea for longer than one month
 unexplained persistent fever (intermittent or constant for longer than one month)
 persistent oral candidiasis
 oral hairy leukoplakia
 pulmonary tuberculosis
 severe bacterial infections (e.g. pneumonia, empyema, pyomyositis, bone or joint infection,
meningitis, bacteraemia)
 acute necrotizing ulcerative stomatitis, gingivitis or periodontitis
 unexplained anaemia (below 8 g/dl ), neutropenia (below 0.5 x 109/l) and/or chronic
thrombocytopenia (below 50 x 109 /l)
CLINICAL STAGE 4
 HIV wasting syndrome
 Pneumocystis pneumonia
 recurrent severe bacterial pneumonia
 chronic herpes simplex infection (orolabial, genital or anorectal of more than one month’s
duration or visceral at any site)
 oesophageal candidiasis (or candidiasis of trachea, bronchi or lungs)
 extra pulmonary tuberculosis
 Kaposi sarcoma
 cytomegalovirus infection (retinitis or infection of other organs)
 central nervous system toxoplasmosis
 HIV encephalopathy
 extra pulmonary cryptococcosis including meningitis
 disseminated non-tuberculous mycobacteria infection
 progressive multifocal leukoencephalopathy
 chronic cryptosporidiosis
 chronic isosporiasis
 disseminated mycosis (extra pulmonary histoplasmosis, coccidiomycosis)
 recurrent septicaemia (including non-typhoidal Salmonella)
 lymphoma (cerebral or B cell non-Hodgkins)
 invasive cervical carcinoma
 atypical disseminated leishmaniasis
 symptomatic HIV-associated nephropathy or HIV-associated cardiomyopathy
a Unexplained refers to where the condition is not explained by other conditions.
b Assessment of body weight among pregnant woman needs to consider the expected weight gain of pregnancy.
c Some additional specific conditions can also be included in regional classifications, such as the reactivation of
American trypanosomiasis (meningoencephalitis and/or myocarditis) in the WHO Region of the Americas and penicilliosis in Asia.
Source: Revised WHO clinical staging and immunological classification of HIV and case definition of HIV for surveillance. 2006 (in
press).
42
Session 2.3.2 Positive living and self care
Time: 45 min
Participants will be able to:
 Describe positive living and why it’s so important to PLHIV,
families and CHBC
 Explain why working, falling in love, getting married and
having children are important to a fulfilling life and human
needs
 List future hopes and desires PLHIV
 Practice future planning
Trainer Instructions:
Presentation 2.3.2
Methodology:


brainstorming
short presentation
Materials needed:



flipchart paper
coloured markers
LCD and computer
Handout:

only presentation
Preparation:

Have blank white sheet of paper ready for distribution for the lifeline future plan activity.
Activities:
1. Introduce the session by asking participants what their understanding of positive living is.
Write responses on the board. Then summarize, stating that good care for people with HIV
starts with them. It starts with a sense of hope, self-respect, and a belief that there are things
they can do to improve their health and wellbeing. When these things are in place, people
living with HIV are able to think about the future and plan for it. Ask participants if positive
living is only for people with HIV. Tell participants that, in fact, all people need positive living in
order to live well but that it is even more important for those who have life-limiting diseases
such as HIV. The more that they do to support their immune system, the better they will feel.
Point to the immune system graph and remind people why it is so important that PLHIV live
positively.
2. Give the presentation. Emphasize the role of HIV care providers in building positive living and
self-care skills among PLHIV.
43
3. Discuss the role of the PLHIV and NGO books in building self-care and independence of
PLHIV and their families. Brainstorm how the books can be used to do this in different care
settings.
4. After the presentation, invite a guest lecturer to speak. The individual should be someone
living with HIV who would like to present on their strategies in positive living, and provide
advice to PLHIV and HIV care workers on what they can do to support positive living and selfcare skills for their clients and friends.
5. Facilitate a Q&A with participants and PLHIV speaker.
6. Conclude the session by showing the slide on future planning. Ask all participants to prepare
a ‘life-line’ and future plan. A ‘life-line’ is simply a line of their life to date where they mark
important events in their life (both happy and sad). The future plan is listed along a dotted line
which represents the future. On this line participants should brainstorm the top three things
they want to achieve and mark when they want to achieve it by on the line of the future. They
should them write down the main steps they feel they need to complete to achieve these
future goals. These will not be shared but kept by participants to continue to work on until they
have completed their future plan.
7. Close the session by summarizing the definition of positive living and its importance.
Notes for the facilitator:
What is positive living?
Positive living is when people with HIV reach a point where they accept their diagnosis and begin
to feel hope. It’s when PLHIV respect and love themselves, and want to care for themselves and
others. This includes wanting to plan for the future to ensure that they and their loves ones are as
best cared for as possible.
What is self-care?
Self-care is the result of positive living. It consists of having the knowledge, motivation and skills
to keep oneself as healthy as possible. This includes knowing how to eat well, being committed to
staying adherent to ART, going to clinic appointments on time, etc.
What can positive living and self-care include?










accepting the HIV diagnosis and disclosing to those you love
feeling hope
learning as much as possible about HIV, what it does to the body, and how to protect
oneself from infections
developing a daily schedule to promote a sense of security and stability
eating enough nutritious foods and drinking enough water
trying to maintain good hygiene and keep food and water clean to prevent infections
getting regular, moderate exercise
resting and relaxing
knowing how to take medicines correctly
planning for the future: preparing a will, saving money, deciding where children (if HIVpositive person is a parent) will live after they die
44






spending time with friends and family
having fun
joining a PLHIV support group
counselling and caring for other including other PLHIV
safer sex
trying to reduce drug use, drinking alcohol and smoking cigarettes
What can HIV care providers and others do to support positive living and selfcare?
Promote positive living by being with their clients from the point of diagnosis throughout their life,
helping them to adjust to the diagnosis, develop hope and confidence, and plan for the future.
Promote self-care by building the knowledge, motivation and skills of PLHIV to care for
themselves and support families to be knowledgeable in care and encouraging and helpful to
their loved one with HIV.
45
Session 2.3.3 Nutrition and Exercise
Time: 1 h
Participants will be able to:
 Explain why good nutrition is so important for PLHIV
 Describe why preventing weight loss and building/maintaining
muscle mass are so important for PLHIV ability to stay healthy
and fight off infections
 Describe techniques for improving nutritional intake
 List ways to address lack of appetite, nausea and vomiting
 Explain what care and support workers can do to support
good nutrition in PLHIV
Trainer Instructions:
Presentation 2.3.3, Handout & Activity 2.3.3
Methodology:





Brainstorming
Short presentation
Small group work
Sorting game
Case study and role-play
Materials:



Flipchart paper
Coloured markers
Examples of locally-available affordable and nutritious foods
Handout 2.3.3:


list of locally-availably and affordable nutritious foods (developed onsite for each training
location if feasible)
Activity
Preparation:



Survey the local market and, with the help from a few participants, buy locally-available
and affordable foods within each of the food groups. This includes energy-giving foods
(staples, sugar, oils/fats); protein (animal and vegetable) and fruits and vegetables.
Prepare four sets of three signs to place on the table where the food is. One should say
“Go”, one “Grow” and one “Glow”. Prepare another sign that says ‘Water.’
Write the names of five different types of common exercises on paper cards (one per
card). They could, for example, include walking, yoga, gardening, playing ball, or football.
46
Note for Facilitators
Prior to facilitating the session, the trainer should find out more about the dietary habits in
the community, varieties of local food, hindrances that prevent healthy eating, and local or
national food guides if available. Modification of the charts may be necessary to suit the
local situation.
Activities:
1. Review the learning objectives of the session. Then start the presentation with the basics of
food and nutrition. Ask the participants why we eat. Then ask them why good nutrition is
essential for all humans. Show the presentation slides, which list all the things good nutrition
does for the body. Then ask participants what constitutes a nutritious diet. Ask if it is OK to
only eat the same thing all the time. Participants will say “no”. Then ask participants to explain
the different food groups and what types of food fit within the different groups. They should list
the following groups:
a. Energy foods, or ‘Go’ foods
b. Body-building foods, or ‘Grow’ foods
c. Protective foods, or ‘Glow’ foods.
After hearing their answers, show the Powerpoint slide again with the explanations for the
food groups and what they do. Remember to ask about the importance of hydration. Ask
participants if it is important to drink fluids such as water. Also ask participants how much
water a person should consume in a day (two litres). Show the slide in the presentation, which
reviews the reason why hydration is so important.
2. Explain that participants will now be responsible for showing that they understand the three
food groups and hydration by divvying up the locally-procured foods correctly. If possible,
divide the food so there is enough for three to four groups. Divide participants into groups and
tell them they have 10 minutes to divide the foods into each food group and place a sign in
front of each. When each group is done, ask them to present their work. After each group
presents, ask participants if they feel the group was correct or if anything needs to be
changed. If you identify something that needs to be corrected, raise the issue to the group
and then clarify it. After each group has presented, have everyone return to their desks.
(Note: the food should be used for a training meal or given to a local PLHIV group so it does
not go to waste.)
3. Introduce the topic of HIV AND AIDS and nutrition. Ask participants if they think that people
with HIV need to eat more, less, or the same as people who do not have HIV. Refer back to
the immune system graph used in Session 3.1 and explain the need for PLHIV to eat more
energy foods. Present on the caloric needs of PLHIV using the power point presentation.
Important Points



4.


Weight loss leads to more rapid deterioration of health. It is very important to try to maintain normal
body weight through a balanced diet of energy-giving, body-building and protection foods.
Asymptomatic PLHIV need 10 percent (300 kcal) more energy foods than other people.
Symptomatic PLHIV need 20 to 30 percent (800 kcal) more energy foods than other people.
Ask
participants
to identify
existincreased
that prevent
PLHIV from having good
Pregnant
women with
HIV alsowhat
need barriers
a significantly
caloricthe
intake.
nutrition,
andadequate
record their
comments
onvitamins
the flipchart.
KeepC,the
the common
PLHIV need
vitamins,
especially
A, B6, B12,
iron,emphasis
zinc, and on
selenium
to help
fight infections. The best source of these is foods.
Water must always be boiled (for minimum 20 minutes) and PLHIV should drink plenty of fluids: two
to three liters of water a day.
47
problems. For example, when people feel sick they may not feel like eating, or when poor
families who do not have enough to eat.
5. Now present the negative nutrition cycle to participants and discuss how poor nutrition can
result in a weakened immune system, and how a weakened immune system can result in
increased vulnerability to illness. When one is sick they feel less able to eat, which results in
further reduced ability to fight infection.
6. Next, make the point that there are many things that can be done to support nutrition in our
clients to slow the negative cycle of nutrition and that once ART is given to PLHIV it will help
to restore the immune system and lead to better health and ability to absorb nutrients. Explain
the importance of nutrition in helping to improve ability of PLHIV to tolerate ARVs. Discuss the
very affordable foods, which are available to poor families. (Note: the discussion will be
different in Port Moresby than in rural areas so ensure that you are aware of the different
nutritional constraints in each area.)
7. Divide the participants into three groups and provide them with case studies on nutrition. Ask
them to assess the situation and to prepare a meal based on the needs of the client. Assign
10 minutes to this activity, and another 10 for their comments. If there is time, one of the
groups can do a role-play. Summarize the results of the group work.
8. Now ask participants to brainstorm why exercise is included in the nutrition session. Explain
that exercise not only builds body mass, but also stimulates appetite, helps improve sleep,
and can improve the sense of wellbeing. Then ask participants to list affordable forms of
exercise that clients could undertake, such as walking, yoga, stretching, meditation, daily
work (gardening, farming), and games.
9. Pass out cards to participants with names of exercises written on them and then ask the
participants to stand in a circle. Call out the different types of exercises (there should be five)
and ask the participants to demonstrate them to the rest of the group. Summarize the types of
exercise and its importance with the participants.
10. Summarize the topics and the learning objectives for the session:
 Importance of nutrition
 Barriers to good nutrition
 Ways in which HIV caregivers can promote good nutrition
 Importance and types of exercise
Notes for the facilitator:
Nutrition
Nutrition refers to how the body uses food for growth and protection.
Why is good nutrition important?
 Growth, development, replacement and repair of cells and tissues
 Production of energy, warmth, movement, and work
 Carrying out chemical processes such as digestion, metabolism, and maintenance
 Protection against, and recovery from, disease
48
Nutrition is needed in large amounts. Carbohydrates, proteins, and fats are macronutrients.
Vitamins and minerals, which are needed in smaller amounts, are micronutrients. Both are
essential. They are needed in the right amounts and combination for the body to function
properly.
Basic nutritional needs
No single food contains all the nutrients the body needs in the right quantities and combinations.
Only breast milk contains the right combination and quantity for infants.
Energy-giving foods
Carbohydrates
Carbohydrates in the diet are found in staples and sugars. Staples include rice, bread, noodles,
potatoes, sweet potatoes, corn, bananas, sorghum, and millet. Staples mainly supply
carbohydrates that are important for providing energy.
Sugars and sugary foods
Sugars are also rich sources of energy. Sugars and sugar foods include honey, sugarcane, jam,
biscuits and cakes. Many of these are not rich in other nutrients. In addition, many organisms like
yeast and molds grow in sugary settings.
Fats and oils
Fats and oils are a rich source of energy. One gram of fat provides twice the energy of one gram
of carbohydrates. Therefore, people need fats only in small quantities. Fats also add flavour and
taste to food and thus stimulate the appetite. Fats build body cells, help body processes, and are
essential for absorption and use of fat-soluble vitamins. Excessive consumption of fat, however,
predisposes individuals to obesity and coronary heart disease.
Vegetable oils and fats are obtained from corn, sunflower, cottonseed, and palm, and margarine
as well. Animal sources of oils and fats include butter, ghee, cheese, fatty meats and fish
(including fish oil).
Dietary fibre
Fibre is important for the movement of the bowels. However, it reduces absorption of some
nutrients like iron, zinc, and other minerals. Fruits and vegetables are the best sources of fibre.
Body-building foods
Proteins are referred to as body-building foods. They are essential for cell growth. Proteins
support the function and formation of the general structure of all tissues, including muscles,
bones, teeth, skin, and nails. There are two main types of proteins, plant and animal.
Plant proteins
These include beans and peas of different varieties, nuts, soybeans, and peanuts. Plant proteins
also provide vitamins and minerals.
Animal proteins
The main animal foods in Pakistan that provide proteins are meat, milk (including cheese, yogurt
and fermented milks), fish, and eggs.
Animal proteins are considered ‘high-quality’ proteins, and also provide vitamins and minerals.
Many vitamins provided include the B vitamins, vitamin A, and minerals like iron, calcium and
copper. Animal products provide additional energy too.
49
Protective foods
Fruits and vegetables are known as protective foods because they provide vitamins and minerals
that are essential to strengthening the immune system. Pakistan has a variety of fruits and
vegetables, many of which grow in home gardens. They are an important part of healthy and
nutritious diets. Fruits and vegetables supply primarily vitamins and minerals needed in the body
in small amounts. They are also a major source of fibre and roughage required for healthy bowel
movement and to prevent constipation.
Vitamins
Some vitamins are water-soluble and should be consumed continuously as the body does not
store them but secretes any excess taken. Other vitamins (A, D, E) are fat-soluble, implying that
the vegetables should be prepared with some oils/fats for efficient absorption and use by the
body.
Minerals
Minerals are needed for the functioning of the immune system. Important minerals include iron,
selenium, zinc, iodine, and calcium.
Vegetables
Vegetables add taste, flavour and colour to our meals. Common vegetables include spinach,
carrots, green peppers, and tomatoes. Vegetables contain important immune substances called
beta-carotenes.
Fruits
A variety of fruits are available in Pakistan. The deep yellow or orange coloured fruits are richer in
vitamins, particularly beta carotenes and vitamin A. Such fruits include pawpaw, mango, and
pumpkin. Citrus fruits such as oranges, lemons, and limes are good sources of vitamin C.
50
Micronutrients and their role in good nutrition
Micronutrient
Vitamins
Vitamin A
Thiamine
Vitamin B1
Riboflavin
Vitamin B2
Niacin
Vitamin B3
Pyridoxine
Vitamin B6
Cobalamin
Vitamin B12
Ascorbic Acids
Vitamin C
Role
Source
Growth and function of T and B cells for
immunity; maintenance of certain cells,
including the lining of the respiratory and
gastrointestinal tracts
Dark green, yellow, orange, and red
vegetables and fruit including: spinach,
pumpkin, cassava leaves, green and
red peppers, squash, carrots, yellow
peaches, apricots, pawpaw, and
mangoes. Vitamin A is also contained
in red palm oil, yellow corn, orange and
yellow sweet potatoes, egg yolks and
liver.
Vitamin A deficiency is associated with
more rapid HIV progression, increased
adult mortality, increased mother-to-child
transmission, higher infant mortality, and
child growth failure
Important for energy metabolism;
supports appetite and nervous system
functions
Important for energy metabolism; support
of normal vision, health and integrity of
skin
Essential for energy metabolism; support
integrity and health of skin, nervous and
digestive systems
Facilitates metabolism and absorption of
fats and protein; helps to make red blood
cells
Important for new cell development and
maintenance of the nerve cells
Important for immune functions and iron
absorption
Vitamin E
Protects cell structures and makes it
easier to resist disease
Iron
Transports oxygen to the blood;
eliminates old red blood cells, and builds
new cells
Builds strong bones and teeth; important
for functioning of the heart and muscle
functions, blood clotting and pressure;
immune defences
Reinforces the immune system,
facilitates digestion and transport of
vitamin A
Prevents impairment of the heart muscle
Calcium
Zinc
Selenium
Iodine
Whole grain cereals, beans, meat, fish,
chicken, eggs
Milk, meat, green leaves, whole grained
cereals, fish, and beans
Milk, eggs, poultry, peanuts, whole
grained cereals, fish
Corn, avocados, cabbage, meat, fish
Red meat, fish, chicken, shellfish, eggs,
milk products
Citrus fruits: oranges, grapefruit,
lemons ; guavas, mangoes, tomatoes,
and potatoes
Leafy vegetables, vegetable oils,
peanuts, eggs yolk, vegetables and
liver
Red meat, poultry, shellfish, eggs.
Peanuts, beans, some cereals and
dried fruit
Milk, green leaves, shrimp, dried fish,
beans, peas, whole grain millet, oil
seeds, and okra
Meat, chicken, fish, cereals and
vegetables
Liver, meat, carrots, onions, milk, and
eggs
Fish and other seafood, salt with iodine
Ensures the development and proper
functioning of the brain and of the
nervous system
Magnesium
Strengthens the muscles, important for
Cereal, dark green vegetables,
nervous system functions and is involved seafood, nuts, legumes
in bone development and maintenance
of teeth
Source: A Guide for Nutrition, Care & Support, FANTA Project, AED, 2001
51
Clean/safe water
To remain hydrated, about eight cups (or two litres) of water should be consumed per day and
even more if suffering from diarrhoea, vomiting, or fever. You can also drink fruit juice, soups, and
other beverages. Collect your water from a protected source and store it in a clean container. If
the water is not from a protected source, it should be boiled for 10 minutes and cooled before
drinking. Avoid drinking tea or coffee with a meal, as they reduce the iron that the body gets from
your food. Intake of water also helps with absorption and management of medicines such as
ARVs.
Note: Alcoholic beverages are dehydrating substances.
Nutrition and HIV and AIDS
People with HIV require a higher caloric intake than people without the disease. Even when
people with HIV are asymptomatic, they require increased intake of energy-giving foods. This is
because their immune system is constantly working to suppress HIV replication and their bodies
need more fuel to fight the virus. The additional energy needs are as follows:
Increased food intake
Energy needs
Kcal equivalent
Asymptomatic
10% more
300 kcal/day
Symptomatic
20-30% more
800 kcal/day
Note: Energy increase needs remain the same even for those who are on ART.
The time it takes for HIV to develop into AIDS in an individual depends very much on their
nutritional intake and overall health. As the viral load - the amount of virus in the blood increases, the body’s immune system becomes less able to protect itself from common illnesses.
During this time, extra demand is placed on the immune system and increases the body’s need
for energy and nutrients. Common opportunistic infections result in diarrhoea, nausea and
vomiting, suppressed appetite, thrush, fever, and fatigue. These factors further exacerbate the
ability of someone with HIV to both consume and absorb needed nutrients. This in turn results in
an even weaker immune system that is less able to fight off infections and which then requires
even greater nutritional intake to recover from illness and fight off further infection. This process is
the ‘vicious cycle’ of malnutrition and ill health.
52
The Vicious Cycle
The Vici ous Cycle of Micr onutrient
Deficiencies and HIV Pat hogenesis
Poor nutrition
(weight loss, muscles
wasti ng, weakness ,
micr onutrient defici enc y)
Increased nut rition
need s due t o
malabs oprti on and
decreas ed f ood i nt ake;
fight i nf ec tions and vir al
replic ati on
HIV
Impaired immune
system (reduced
ability to f ight HIV
and other
inf ections)
Incr eas ed
vul ner abilit y to
inf ecti ons
Day 2
Malnutrition and HIV
Several studies have shown that weight loss and wasting are associated with increased risk of
opportunistic infections and shorter survival time in HIV-positive adults, independent of their
immune status (such asCD4 counts). In addition, research has also linked micronutrient
deficiencies with higher risk of death.
AIDS wasting syndrome is defined as a 10-percent loss of normal body weight, plus either
chronic diarrhoea or chronic weakness and fever. Wasting is the loss of lean tissue. Lean tissue
is very important for the body’s ability to metabolize foods and medicines.
Some of the common symptoms and illnesses that lead to malnutrition and weight loss in HIV
are: (See Section 5 for how to manage these problems in the home environment.)
Appetite loss
This is very common with people who have HIV AND AIDS and may be related to underlying
infections and fever, medicine side-effects or depression.
Diarrhoea
The loss of essential water and nutrients and suppressed appetite often associated with
diarrhoea lead to dehydration and weight loss. This is a common trigger of weight loss among
people with HIV AND AIDS, particularly those with chronic diarrhoea. Severe malnutrition can
result from prolonged diarrhoea.
Fever
Fever is frequently experienced by people with HIV AND AIDS and results in increased energy
expenditure and therefore greater intake of nutrients.
Nausea and vomiting
Common side-effects of medicines are nausea and vomiting. These symptoms greatly reduce the
desire for people to eat and drink and can result in dehydration and weight loss.
53
Thrush
Pain and discomfort caused by thrush in the mouth and throat can reduce the desire of people
with HIV to eat. This can result in weight loss and malnutrition.
Pain
70 to 80 percent of people with HIV experience pain and this can lead to suffering, which inhibits
people’s ability to eat adequately.
Reversing the vicious cycle of malnutrition
This vicious cycle can be mitigated with good nutrition, moderate exercise, timely management of
symptoms, and treatment of underlying infections. Through these strategies, people with HIV and
AIDS can better:






Maintain body weight and strength
Fight off infections
Respond to treatment of OIs
Cope with side-effects of ARVs and other medicines
Care for themselves and their loved ones
Engage in daily activities such as work, growing food, and contributing to the income of
their family
The Cycle of Good Nutrition
The Cycle of Good Nutrition and
Resistance to Infection
Good Nutrition (good
food intake, maintenance of
weight and muscle tissu e,
good micronutrient status)
Manag em ent of HI Vrel ated comp lication s
(i.e. mal absor ption,
diarrhea, lac k of
appetite, weight loss)
Strengthening the
immune system
(ability to f ight HIV
and other
inf ections)
HIV
Incr eased r esi stan ce
to infection s (i. e.
diarrhea, TB …)
Da y 2
What can HIV caregivers do to promote the nutritional wellbeing of their clients?
HIV caregivers can promote client understanding of the importance of a well-balanced diet and
the need for increased intake of energy foods. They can also:
 assist families in planning and preparing meals to respond to the needs of the client
(which address common symptoms, and can help with weight gain)
 ensure that clients are able to check and track their weight regularly so they (and the
CHBC team) can more closely monitor changes in their health and respond to them
 encourage clients to drink at least eight glasses of clean water a day
54






promote food and water hygiene.
inform clients about the negative nutritional impact of coffee, tobacco, drug use and
alcohol
help clients manage common symptoms and medicine side-effects through the use of
appropriate foods and fluids (see Section 5 for specific strategies to manage common
symptoms through foods and fluids).
refer clients for early diagnosis and treatment of OIs, including TB
help clients on ARVs understand the food requirements related to the specific ARV
medicines they are taking
link clients to programs that support the development of home gardens and income
generation, or which offer food assistance to non-food secure households
Nutrition and HIV: Tips for healthy living
Healthy food habits for PLHIV
Increase the number of meals and snacks per day: If poor appetite persists or if the person is
ill, it is a good idea to distribute the food intake throughout the day. Snacks should be included in
the daily meal plan. A snack is any nutritious food that is readily available and can be eaten
without much preparation. Good snacks are nuts, seeds, fruit, yogurt, carrots, tapioca chips, crab
chips, and peanut butter sandwiches. With at least three meals a day and snacks in between,
there is less likelihood of malnutrition or weight loss.
If a person needs to stay in bed, food and water should be kept within easy reach. Caregivers
should ensure that sick members of the family are given preference, are fed more frequently, and
receive extra servings to maintain their weight and strength. Food should be served in an
attractive way. Caregivers need to be kind while frequently encouraging people to eat.
Preventing weight loss during and after illness: Infection increases the body’s requirements
for nutrients. Illness also reduces the appetite and the ill person will eat less food, causing weight
loss.
Early treatment of infection is important to maintain body weight. If infection persists and cannot
be cured by nutritional management within a couple of days, advice and treatment should be
sought from a doctor, nutritionist, nurse, or local health worker.
Once the infection is over and the person is feeling better, he or she should start eating normally
again. It is important to regain the weight lost as soon as possible and to restore the body’s
nutritional reserves.
Increase vitamin and mineral intake: Vitamins and minerals are essential to staying healthy.
They protect against opportunistic infection by ensuring that the lining of skin, lungs, and gut
remain healthy and that the immune system functions properly. Of special importance are vitamin
A, vitamin C, vitamin E, certain B-group vitamins, and minerals such as selenium, zinc, and iron.
A balanced diet should provide enough of these vitamins and minerals.
Recommendations regarding preparation and choice of food: Since the vitamin content of
food can be damaged by cooking, it is better to boil, steam, or fry vegetables for a short time only.
Boil vegetables in a little water and use it afterwards for cooking as the water contains
considerable amounts of vitamins and minerals. Vegetables will lose some of their vitamins and
minerals if soaked for a long time.
55
The skin and kernels of grains and legumes also contain vitamins, in particular of the B-group.
Processed refined grains have lost many of their vitamins, minerals, and proteins so whole grains
such as brown bread and unrefined cereals are better sources than white bread and refined
cereals. Fortified cereals and bread are preferred because of their higher vitamin content. If a
person has diarrhoea, however, whole, unrefined grains and cereals should be avoided since this
insoluble fibre makes the diarrhoea worse. Soluble-fibre foods, such as bananas, are
recommended. Fibres are contained in many plant foods and soluble fibre will bind water in the
gut and reduce diarrhoea.
Micronutrient supplementation
When food intake is low, multivitamin and mineral supplements - often in the form of pills - can
help meet increased requirements. However, these supplements are often not available or are
expensive and leave less money for food. It is better to provide a good, balanced diet whenever
possible rather than buy supplements.
If supplements are considered necessary, the following guidelines should be followed:





Discuss your intake of vitamin and mineral supplements with your health worker or
nutritionist.
Always take vitamin pills on a full stomach. Be consistent and take them regularly.
It is probably less expensive to take a combined product with minerals rather than several
pills containing different vitamins and minerals. However, iron may be a problem for
people with HIV, as it can increase the activity of some bacteria. Supplements that do not
contain iron are therefore better.
Take any vitamin or mineral supplement according to the advice on the label. More is not
necessarily better. High doses can cause nausea, vomiting, decreased appetite, and liver
and kidney problems as well as interfere with the immune system. This is particularly true
for vitamin A, vitamin E, zinc, and iron.
Micronutrient supplements can be useful but cannot replace eating a balanced and
healthy diet.
Maintaining food hygiene: Avoiding food-borne illness
It is important to store, cook, and handle food safely when caring for people living with HIV AND
AIDS, avoiding the introduction of harmful germs to prevent food-borne illness.
Food safety and hygiene practices include:
Sanitary disposal of faeces
 Use a latrine and keep it clean and free from flies.
 Keep surroundings clean.
 Wash in hot water with soap clothes, bedding, and surfaces that might have been
contaminated with faeces.
 Wash hands after defecation.
Personal hygiene:
 Always wash hands with clean water and soap during and after preparation of food or eating,
and after visiting the toilet. Dry hands on a clean cloth or towel, or shake dry.
 Cover all wounds to prevent contamination of food during preparation and handling.
56

Use safe, clean water from protected sources such as treated piped water supplies,
boreholes, and protected wells. If the water is not from a protected source, it should be boiled
for 10 minutes before drinking or use. Care must be taken during collection and storage. Use
clean containers to prevent contamination. Water containers in the home can easily become
contaminated by dirty cups and hands that have not been washed.
Hygiene in the kitchen:
 Keep all food preparation surfaces clean. Use clean dishes and utensils to store, prepare,
serve, and eat food.
 Wash vegetables and fruit with clean water.
 Cover food to prevent both flies and dust from contaminating it.
 Keep rubbish in a covered bin (and empty it regularly) so it will not cause offensive smells and
attract flies, which can contaminate food with germs.
 Germs multiply more quickly in warm food. Storing food in a refrigerator or cool place slows
this growth. Cooking on high heat can also kill most germs. Food should be eaten as soon as
it is cooked.
 Cover and store food in containers away from insects, rodents, and other animals.
 Store fresh food in a cool place or refrigerator where available.
 Cook food thoroughly, but do not overcook vegetables.
 Serve food immediately after cooking to avoid germs multiplying. Do not leave the food
standing at room temperature before eating.
 Do not store raw and cooked foods together; use containers to avoid contact between
 Avoid storing leftovers unless they can be kept in a refrigerator or a cool place. Do not store
them for more than one or two days and always reheat them at a high temperature to kill
germs before eating.
Food hygiene for animal products:
 Cook meat and fish well; meat should have no red juices.
 Wash utensils and surfaces touched by animal products with hot water and soap before
preparing other foods.
 Keep meat and fish separate from other foods.
 Eggs should be hard-boiled. Do not eat soft-boiled eggs, raw eggs, cracked eggs, or any
foods containing raw eggs.
However careful one is, food-borne infections may still occur. When a person has serious food
poisoning, the caregiver should see a health worker without delay in order to avoid weight loss
and further illness. It is important to see a health worker without delay in order to avoid lifethreatening dehydration.
Exercise
Importance of exercise
Exercise improves wellbeing: Regular exercise makes a person feel more alert, helps to relieve
stress, improves sleep, and stimulates the appetite. Exercise is the only way to strengthen and
build muscles. The body uses muscles to store energy and protein that the immune system can
draw upon when required. Exercise is therefore especially important for maintaining the health of
people living with HIV and AIDS.
It may be that everyday activities such as cleaning, working in the field, and collecting firewood
and water provide enough exercise. If a person’s work does not involve much exercise, an
57
exercise program should be found that can be part of his or her daily life. Exercise should not be
tiring or stressful; gentle muscle-building exercise is recommended. Walking, running, swimming,
and dancing are all suitable.
For people who are bedridden, the following exercises can be done in bed to increase circulation
and improve joint and muscle health.
Limb/joint exercise: Clients exercise their joints: neck, shoulder, elbow, wrist, fingers, hands,
hip, knee, ankles and feet, and toes. Position changes also help for the some joint exercise.
If clients cannot do these exercises by themselves, the support system (caregiver) should provide
them.
Deep Breathing and Coughing Exercises: Deep breathing and coughing exercises can also
help prevent respiratory complications due to lack of movement.
Summary
Nutrition is essential to maintaining the health and wellbeing of people with HIV and AIDS. Good
nutrition can protect PLHIV from infections, help them better tolerate medicines such as ARVs,
and as a result extend the quality and length of life of an individual with HIV. Exercise facilitates
the development of muscles and tissue, which in turn, promotes appetite and maintenance of
body weight.
Activity 1
Case Study 1 - Saleem
You, the home-based care team, have been visiting Saleem for a while and his weight seemed
stable before. But today you notice that his clothes are beginning to look loose on him. Saleem’s
mother also calls you aside when you arrive to say that she is very worried because even though
Saleem is not feeling very sick, he is not eating very much. His mother says that Saleem seems
sad. Saleem’s mother is very supportive of him and does not discriminate against him. You tell
Saleem’s mother that you would like to meet with Saleem alone. You sit with Saleem and ask him
how he is feeling. You ask open-ended questions and listen to what Saleem has to say. He tells
you that he is ashamed of having HIV and wants to keep himself isolated so as not to bring
shame to the family. He feels like his life means nothing and therefore does not feel like eating.
He just sleeps a lot and stays in the house.
Please spend 10 minutes discussing this case study and prepare a response on flipchart paper
describing the main problem facing Saleem and what you would do to address the problem.
Consider what the cause of the problem might be. Also prepare a menu for Peter and his mother
that describes what he should eat and drink each day.
==============================================================
Case Study 2 - Muhammad
You, the home-based care team, are visiting Muhammad for the second time. Muhammad
recently tested HIV-positive and, while not symptomatic, wants to know more about how he can
stay healthy, keep his appetite up, and keep his weight on. He also wants to know more about
where to go for medical services so he can enrol in a clinic for care when he does begin to
develop symptoms.
58
What is Muhammad’s main need at this point?
Please spend 10 minutes discussing this case study and prepare a response on flipchart paper
describing the main problem facing Muhammad and what you would do to address the problem.
Also, prepare a menu that describes what he should eat and drink each day.
==============================================================
Situation 3 - Malika
Malika has chronic diarrhoea and has lost five kilos in the past month. The more weight she
loses, the weaker she feels. The weaker she feels, the less she wants to eat. Although Malika
says she is very thirsty, her mother does not want to give ORS because she thinks giving her
daughter more liquids will cause more diarrhoea. She has been giving her daughter a lot of sour
fruits and fried vegetables to eat because she thinks this will make her daughter better.
What is the main problem in this situation? How can you explain the importance of
rehydration and use of ORS and other fluids to the mother? How would you teach her to
use ORS? What kind of information can you provide the mother and daughter regarding
what foods to eat when experiencing diarrhoea? How can you teach her to change the
food she is currently providing and instead provide gentler, easy-to-digest foods for her
daughter?
Please spend 10 minutes to discuss this case study and prepare a response on flipchart paper
describing the main problem facing Malika and what you would do to address it. Also, prepare a
menu for Malika and her mother that describes what she should eat and drink each day.
59
Session 2.3.4 Hygiene and infection prevention in the home
Time: 1:30 h
Participants will be able to:
 Describe risk and non-risk of HIV in CHBC
 Describe importance of hand washing
 Practice hand washing under the observation of facilitators
 Describe the three types of hygiene: personal, environmental
and food/water
 Correctly put on/take off, dispose of gloves
Trainer Instructions:
Presentation 2.3.4, Handout 2.3.4
Methodology:




Brainstorming
Presentation
Demonstration and practice
Case study
Materials needed:



Flipchart paper
Coloured markers
Material/equipment needed for demonstration and practice (enough for all participants):
 Soap and towels
 Small and medium sized disposable gloves
Handout 2.3.4:

Wash your hands
Preparation:

Ensure there is a place very close to the training site where participants can practice hand
washing
Activities:
1. Ask participants to discuss what we do in the community to prevent infections and sickness,
through immunizations, covering the mouth when coughing, getting enough rest, eating well,
wearing condoms, and others. Summarize that we do things to prevent illness because
“prevention is better than cure.” Write this saying on flipchart paper. Then say that for PLHIV,
this is even more important - ask participants to discuss why this is the case. Point to the
disease progression graph on the wall and say that every time PLHIV get sick it damages
their immune system and increases viral load. The more we can prevent illness, the healthier
our clients will be.
60
2. Now ask participants if they know what one of the most important health interventions is in
terms of improving overall human health. Probe until someone says “hygiene”. Say that hand
washing alone and clean water supplies have resulted in major reductions in human illness,
more even than medicines.
3. Ask the participants, "Why is hygiene important to PLHIV?” List ideas on flipchart paper. Note
participants’ views on the board. Discuss the points and if incomplete add missing important
points. Emphasize that we, as HIV caregivers, need to be very conscious of preventing the
bringing of germs into the home. Ask participants to explain what happens when we provide
care with dirty hands, dirty gloves, or dirty supplies. Say that we always need to consider this
in the care we are providing to our clients. Provide the example that when some people use
gloves they think only that ‘they are protected’ (not that the gloves pick things up too) and
touch things around them, making their gloves dirty and risking the introduction of infection to
the client.
4. Next, explain that there are different areas of hygiene that affect PLHIV and their caregivers.
List the categories on separate sheets of flip paper (food/water hygiene, personal hygiene,
environmental hygiene). Divide the participants into three groups and give each group one of
these topics accompanying flipchart paper. Ask each group to list (1) ways that PLHIV and
their caregivers can practice good hygiene in this area and (2) what can HIV care providers
do to promote good hygiene in the given areas. Give groups 10 minutes to complete this
exercise. Ask the groups to present their answers. Have participants add suggestions under
each heading as appropriate.
5. After the discussion, ask participants to refer to their PLHIV and NGO handbooks for further
information on hygiene for PLHIV. Summarize the main points.
6. Next, define infection prevention and standard precautions. Explain that all health care
workers take precautions to prevent disease based on potential risk of exposure to different
disease. Explain that infection prevention is based on science and evidence. Provide an
example of using gloves when exposed to blood. We use gloves because there is a very
slight, but still present, risk of transmission of HIV and other blood-borne diseases.
7. Ask participants when they would wash hands and when they would use gloves when caring
for PLHIV. Read out scenarios and ask different people to respond. The scenarios are
 taking vital signs from a PLHIV
 conducting a physical exam when the skin is intact
 cleaning a wound
 cleaning up diarrhoea
 cleaning a sheet with blood on it
 giving a massage
Clarify that we wash our hands for good hygiene to prevent introducing germs and sickness to
our clients. When we use gloves, we need to be conscious of the same thing. Then say that we
use gloves in the following cases:


When touching blood or puss (wounds, cleaning spills) to prevent risk of HIV
transmission and other blood-borne diseases.
When cleaning up other bodily fluids, such as diarrhoea or vomit. The use of gloves
helps to prevent transmission of other diseases (such as giardia) that can live in these
61


fluids. HIV cannot live in diarrhoea and vomit unless there is blood present in these
fluids.
When examining or cleaning the genital area.
When examining or applying medicine to treat scabies or other infectious skin diseases.
8. Now, tell participants that this is their chance to practice hand washing, gloving, and other
skills. Start with hand washing. Ask participants, “How many of you washed your hands
before lunch or tea break today? Raise your hands if you did.” Then ask participants to
explain why it is important to wash our hands before we eat. After this, encourage participants
to look at their hands and tell you if they think they are clean or dirty. Now ask participants to
brainstorm when we should wash our hands. Write responses on flipchart paper.
Summarize
 before and after providing care
 before and after any specific procedure (such as cleaning a wound)
 before wearing, and after removing, gloves
 after handling waste materials (used gauze, soiled sheets)
 after going to the toilet
 before and after preparing or serving food
Demonstrate proper hand washing procedure. Ask two participants to volunteer to do a
demonstration of hand washing using the following supplies:




soap
water
tap, bucket/jug
towels
Then take participants through the five-step hand washing drill. Have participants try it twice.
Now invite all participants to the toilet or other hand washing area to practice. All trainees will
receive feedback from trainers on their practice.
9. Next discuss the use of gloves. Review when we use gloves. Then ask for volunteers from
the group to come up in front of the room and demonstrate how to put on gloves. Select
someone you know who has been trained in glove use to teach the class. If there is no one
who can do it in the class, demonstrate how to correctly put on and take off gloves.
Emphasize the following points: washing hands before and after putting on gloves; keeping
gloves as sterile as possible before and during a procedure (cleaning a wound); proper
removal and disposal of gloves. Then pass out disposable gloves in both medium and small
sizes. Make sure participants get the right size. Then have the practice putting on and taking
off gloves until everyone is clear on how to do it. All trainees need to receive feedback from
trainers on their practice. Tell participants that if they want to continue to practice they can
take a set of gloves with them.
10. After this, provide instructions on waste disposal. Then discuss and demonstrate handling of
soiled material. Describe how to decontaminate linen using normal household bleach or
washing detergent. Demonstrate preparing bleach solution and washing and cleaning
materials in bleach.
62
11. Conclude the session by reviewing the importance of hygiene and infection prevention; when,
why, and how to wash hands and wear gloves; how to dispose of waste; and how to disinfect
soiled materials.
Notes for the facilitator:
A. Importance of infection prevention including hygiene
Importance/aims:
 Preventing self-infection
 Preventing PLHIV-to-caregiver infection and preventing PLHIV-to-sexual partner infection
 Preventing caregiver-to-PLHIV infection
Self-infection:
In this mode of infection, the PLHIV passes on germs from one part of the body to another, such
as by touching a wound, not washing hands after using the toilet, or scratching and breaking the
skin, leading to a skin infection.
Caregiver-to-PLHIV infection:
The PLHIV has lowered immunity as a result of the HIV infection and is therefore prone to
infections. Caregivers need to ensure hygienic preparation of food and water consumed by the
individual they care for, including regular hand washing. If the caregiver is sick, it is safer to have
another care provider take care of the PLHIV during the period of illness. Common infectious
diseases include the following:





common cold or flu
diarrhoea
skin conditions such as scabies
chest infections like bronchitis, pneumonia, and tuberculosis
fungal infections, especially those affecting the skin
PLHIV-to-caregiver infection:
This can be a very distressing situation. The caregiver is infected with either the HIV virus or
other infections in the process of caring for the PLHIV. It can occur as a result of:





acquiring chest infections such as tuberculosis while caring for the PLHIV
scabies infestation in household sheets and clothing
not using gloves or other available plastic waterproof material while handling soiled linen,
or blood and other body fluids (the risk of HIV transmission in this situation is very, very
low)
attending an HIV-positive person while having open, uncovered cuts, wounds, or
abrasions (the risk of HIV transmission in this situation is very, very low)
a blood splash in the eyes, such as while attending childbirth by an HIV-positive mother
(the risk of HIV transmission in this situation is very, very low)
PLHIV-to-sexual partner(s) infection:
Being HIV-positive does not mean the person is no longer capable or in need of sex. HIV
caregivers need to provide sexually active clients with safer sex information, condoms, and
counselling. This is covered in Session 3.5.
63
Hygiene:
Categories and promotion of hygiene:
Hygiene is a very important factor in living positively with HIV AND AIDS and in keeping the
immune system strong. There are three important categories:
Personal hygiene:
Includes ways in which we keep our body clean and safe from infection. Important points for
personal hygiene are:
 Always wash hands before and after eating, after going to the toilet, before and after
preparing food.
 Bathe regularly.
 Keep nails short and clean.
 Brush teeth, use mouth wash (such as salt water) after meals and before bedtime.
 Keep clothes, bed sheets, and towels clean and dry.
 Wash hands immediately after handling soiled articles.
 Cover your mouth if you have to sneeze using your elbow (don’t use your hands).
 Wear a mask if you have TB, which is still contagious.
Food/water hygiene:
Many infections are borne through contaminated food and water. To prevent this:











Use safe, clean water from protected sources such as treated, piped water supplies,
boreholes, and protected wells. If the water is not from a protected source, it should be
boiled for 10 minutes before drinking or using.
o Care must be taken during collection and storage, and to use clean
containers to prevent contamination.
o Water containers in the home can easily become contaminated by dirty
cups and hands that have not been washed.
Never eat raw eggs or meat, and never drink un-pasteurized milk.
o Eggs should be hard-boiled. Do not eat soft-boiled eggs, raw eggs, cracked
eggs, or any foods containing raw eggs.
o Meat and poultry should be well cooked.
Only eat raw foods when they have been well-washed or peeled (fruits and
vegetables).
Cover foods and beverages to protect them from flies and dust.
Keep uncooked food and juices from coming into contact with other foods.
If possible, use a plastic cutting board rather than a wooden one, because a plastic
board is easier to clean.
Keep all food preparation surfaces clean. Use clean dishes and utensils to store;
prepare, serve, and eat food.
Keep rubbish in a covered bin (and empty it regularly) so it will not cause offensive
smells and attract flies, which can contaminate food with germs.
Germs multiply more quickly in warm food. Storing food in a refrigerator or cool place
slows down this growth. Cooking on high heat can also kill most germs.
Cook food thoroughly but do not overcook vegetables.
Serve food immediately after cooking to avoid germs multiplying. Do not leave the
food standing at room temperature before eating.
64

Avoid storing leftovers unless they can be kept in a refrigerator or a cool place. Do not
store them for more than one or two days and always reheat them at a high
temperature to kill germs before eating.
Environmental hygiene:
Environmental hygiene is also important. It includes
 using a latrine
 keeping the room where the client sleeps clean, and well ventilated
 keeping surrounding areas free from bad odours and still water (still water sitting is a
breeding ground for mosquitoes)
 keeping the house and surrounding area clean, swept, and neat
 hanging clothing and linens in the sun
 soiled materials/waste should be disposed of in a safe place (burnt or buried)
 always using household gloves when handling waste
 soiled linen and body-fluid-stained linen should be cleaned using chlorine solution
 cleaning the floor with chlorine solution if possible
Summary
One very important way to prevent sickness among PLHIV and their family members is to
promote good personal, food/water, and environmental hygiene. By preventing or reducing
illnesses, we can help keep the immune system of PLHIV stronger.
B. HIV transmission and prevention, and CHBC
For this session participants will refer to Session 3.5.
C. Standard Precautions2
What are standard precautions?
Standard precautions are simple infection control measures that reduce the risk of transmission
of blood-borne pathogens through exposure to blood or body fluids among patients and health
care workers. Under the “standard precaution” principle, blood and body fluids from all persons
should be considered as infected with HIV, regardless of the known or supposed status of the
person. Improving the safety of injections is an important component of universal precautions.
Source: WHO, Universal Precautions, Including Injection Safety, 2004.
Essential aspects of standard precautions to be adhered to in the family include the following:
C1. Hand washing
Importance of hand washing
Research has shown that hand washing is the most important way to reduce the spread of
infections in health care settings. However, health care workers wash their hands only about half
as often as they should.
Since hands are the most common vehicle for transmitting infections, it is essential that all staff
who come in contact with clients understand the importance of good hand washing practices.
How does hand washing prevent infections?
Hand washing:
2
Source: Pathfinder. Standard Precautions Training for Health Care Workers.
65


reduces the number of infectious micro-organisms on your hands
reduces client sickness and death caused by infections
When should you wash your hands?
Wash your hands whenever there is a chance that they may have become contaminated and
whenever you are at risk of transmitting infections to yourself or others. Always wash your hands
 immediately when you arrive at work
 before examining each client
 after examining each client
 before and after putting on gloves for clinical procedures (such as cleaning a wound)
 after touching any instrument or object that might be contaminated with blood or other
body fluids, or after touching mucous membranes
 after you handle blood, urine, or other specimens
 after using the toilet or latrine
 before leaving work
 before preparing food
 before eating food
 after handling waste materials (used gauze, soiled sheets)
 after coughing, blowing nose
C2. Use of gloves
How do gloves prevent infections?
Gloves act as a barrier that protects health care workers and clients. Gloves protect service
providers from coming into contact with the potentially infectious micro-organisms that can be
found in blood, other body fluids, and waste. During examinations and clinical procedures, gloves
also protect clients from infections that can be caused by the micro-organisms normally found on
the skin of service providers.
Health care workers should wear the proper type of gloves whenever they might come into
contact with blood and other body fluids (for example, while cleaning a wound, handling or
cleaning soiled laundry, or used instruments) and whenever they perform a clinical procedure or
an examination that might put the client at risk of infection.
Only clean gloves prevent infections in clients. If the gloves used during an examination or
clinical procedure are not clean and free of contamination, they can actually spread infections to
clients. To avoid exposing one client to potentially infectious micro-organisms acquired from
another client, be sure to use fresh gloves every time you examine a different client.
Note: Gloves are difficult to properly clean and reprocess. Where resources allow, always use
disposable gloves (gloves that are used once and then thrown away) instead of reusable gloves.
Who is at risk?
Staff: Gloves protect your hands from contamination with infectious micro-organisms. During
client examinations or invasive procedures, service providers may be exposed to potentially
infectious blood and body fluids. A service provider who does not wear gloves in these situations
can easily become infected through a cut, puncture, or cracked skin. Housekeeping staff and the
staff who clean and process instruments and other items that may be contaminated during a
66
clinical procedure have the same risk of exposure as the service provider who performs the
procedure.
Clients: Gloves protect clients from micro-organisms on the service provider's skin. The usually
harmless micro-organisms found on the skin of a service provider may cause infection when
introduced into an area of the body where they are not normally found, such as into a client's
internal organs during surgery. This normal flora can also cause infection in an immunocompromised person who is especially susceptible to infection. Throughout the day, every health
care worker's hands accumulate transient flora that can also lead to infections in clients.
Community: If their hands are contaminated, or if they become infected from exposure to blood
borne diseases, staff members can spread infections to their partners, friends, or family
members. Infections acquired by both clients and staff can lead to increased infections
throughout the community, since these infections can continue to be passed on to others.
Wearing gloves can reduce this risk.
The three kinds of gloves
There are three kinds of gloves used in the clinical setting. Each is used in different situations:
1. Surgical gloves
These should be worn for all clinical procedures where you will be in contact with the
tissues under the skin or with the bloodstream (for example, surgical procedures).
These gloves are generally not used in CHBC service as surgical procedures are not
provided by HIV caregivers.
2. Single-use examination (disposable) gloves
These should be worn for procedures where there will be contact with intact mucous
membranes (for example, pelvic exams) or where the primary purpose of wearing
gloves is to reduce your risk of exposure to blood or other body fluids (for example,
cleaning a wound). Several pairs of these gloves should be contained in every CHBC
kit.
Examination gloves are usually made of latex or vinyl and may be either supplied in bulk in a box
or individually packaged. These gloves are clean, but not sterile. As the name "single-use"
implies, these gloves should always be discarded after one use. They should not be processed
and reused.
3. Utility or heavy-duty household gloves
These thick rubber gloves should be worn for handling contaminated instruments and
other items, for handling waste and linens, for performing housekeeping activities, and
for cleaning contaminated surfaces. These gloves can be reused after cleaning. To
protect yourself from contaminates on the outside of the glove, always wash your
hands while still wearing the gloves - following the routine procedure described in the
Hand washing module of this course - before removal. A pair of these gloves should
be contained in every home-care kit.
67
Remember: Wear gloves whenever you may be exposed to blood and other potentially
contaminated materials, and whenever you handle instruments or other items that may have
been in contact with infectious materials.
C3. Management and disposal of waste materials
During a home visit it is likely that some used supplies will need to be disposed of. These can
include used gloves, cotton wool to clean a wounds, and towels. It is very important that these
materials are disposed of properly and not left at the client’s house or on the ground. The
materials need to be buried in a deep pit or burned. Health centres usually have a system of
destroying waste. The CHBC team needs to do the following when disposing of supplies:
1. Always bring plastic bags to dispose of waste materials.
2. Identify a place near the CHBC team base to dispose of waste materials. It is best if this
can be at the health centre so the waste can be disposed of through this system. If not,
the CHBC team will need to dig a pit on their property and burry the waste there. The pit
should be deep enough so that people, especially children, cannot get into it. Or, destroy
the waste materials by burning them. But you’ll need to ensure that they are completely
destroyed in the fire.
3. If there are sharp materials such as scissors which need to be carried out of the home,
return them to the steel container they are kept in and either take them to the health
centre for sterilization, or, if that is not possible, wash them and soak them in bleach (see
C4 below).
C4. Preparing bleach solution (0.5-percent chlorine solution)
Disinfectants rapidly kill or deactivate infectious micro-organisms during the cleaning process.
Disinfectants are also used to decontaminate an area so that it is safer for staff to clean with a
disinfectant cleaning solution.
In most settings, a 0.5-percent chlorine solution made from locally available bleach is the
cheapest disinfectant, but alternatives include commercial disinfectants that contain 5 percent
carbolic acid (such as Phenol or Lysol) or quaternary ammonium compounds.
How to make a 0.5-percent chlorine solution
A chlorine solution can be made from:



liquid household bleach (Sodium hypochlorite)
bleach powder; Chlorine compounds available in powder form (calcium hypochlorite or
chlorinated lime)
chlorine-releasing tablets (Sodium dichloroisocyanurate)
Because of their low cost and wide availability, chlorine solutions prepared from liquid or
powdered bleach are recommended.
Determine the amount of "active" chlorine:
Compounds containing chlorine are described as having a certain percentage of "active" (or
available) chlorine. It is the active chlorine in these products that kills micro-organisms. The
amount of active chlorine is usually described as a percentage and differs from one product to
68
another. This is important so that a chlorine solution with 0.5 percent "active" chlorine can be
prepared.
Note: In countries where French products are available, the amount of active chlorine is usually
expressed in "degrees chlorum." One degree chlorum is equivalent to 0.3 percent active chlorine.
1. Using liquid household bleach
Chlorine in bleach comes in different concentrations. You can use any concentration to make a
0.5-percent chlorine solution.
Chlorine may be available in the market in different concentrations and forms (tablet, powder,
liquid). One can use bleaching solution bought in the market or it can be prepared by diluting it
with water to a 0.5-percent concentration. For example, if you use 150gm of a 30 percent white
snow packet, you should dilute it with 10 litres of water.





About chlorine
oldest and most common antiseptic compound
powerful killer of micro-organisms
not poisonous to the human being
no poisonous residue
time- and cost-effective
Method: Preparing chlorine solution
1. Ensure you have the following materials:
 Chlorine 150 gm
 water 10 litres in a bucket
 plastic bowls (two)
 measuring mug
 mask
 apron (plastic)
 utility gloves
 scissors
2.
3.
4.
5.
6.
7.
8.
Use a mask to cover your mouth and avoid throat irritation from the chlorine vapours.
Wear utility gloves to avoid skin irritation.
Put one litre of water in the plastic bowl.
Take the chlorine packet, open it, and pour it in the bowl with one litre of water.
Mix the solution. It will become a milky colour.
Pour an additional nine litres of water (1+9=10 litres) to make 10 litres of solution.
Now the solution is prepared and you can soak linens, utensils, and other materials for up to
20 minutes.
9. Use utility gloves to remove items from the chlorine solution, then rinse the items in clean
water and dry.
69







Points to remember
Always use a plastic bucket or bowl, as chlorine can damage
metal with continued use.
Soak the material for up to 20 minutes.
After soaking, wash linen in a bucket of clean water and then
hang out to dry in the sun.
Once prepared, the solution can be used for 24 hours.
Do not use if the colour of the solution changes from its
normal colour, even if before 24 hours.
Use utility gloves to take things out of the chlorine solution.
All materials soaked in the solution must be rinsed
thoroughly before cleaning.
Cleaning soiled clothes and bedding
To make soiled clothes and bedding safe to handle you need




• gloves or plastic bags
• bleach or soap
• a wooden stick
• a bucket or basin
Step 1:


Keep soiled clothes separate.
Mix bleach solution to soak clothes or bedding.
Step 2





Use gloves, plastics, or leaves to handle dirty clothes.
Hold onto the unstained part and rinse off any body fluids or pekpek. When there are large
amounts of pekpek, dispose of in a toilet.
Soak clothes/bedding in soapy water. Use hot water if possible.
Rinse the clothes in clean water.
If you have bleach, soak the clothes for 20 minutes in a bleach solution.
Step 3


Wash the clothes with soap and water, ensuring that all stains are gone.
Rinse the clothes in clean water.
Step 4

Hang the clothes to dry, in the sun if possible.
70
Session 2.3.5 Important medicines in OI prevention and treatment
Time: 1:50 h
Participants will be able to:
 List key OIs and what can be done to prevent them
 Explain the function and use of Cotrimoxazole prophylaxis
 Explain the importance of TB signs and symptom, screening
and treatment
 Explain importance of adherence to all medicines prescribed
(ART adherence session will be conducted later in the
training)
Trainer Instructions:
Presentation 2.3.5, Handout 2.3.5.1 and 2.3.5.2
Methodology:


Brainstorming
Presentation
Materials needed:




Flipchart paper
Coloured markers
Septrim Powerpoint presentation
Examples of single and double strength Cotrimoxazole
Handout 2.3.5.1 and 2.3.5.2:


Important medicines in OI prevention and treatment
WHO fact sheet TB
Preparation:

Familiarize carefully with OIs and medicines
Activities:
1. Review the areas that have been discussed thus far in the training related to keeping PLHIV
as healthy as possible for as long as possible. Tell participants that in addition to positive
thinking and positive behaviours, there is a medicine that can also help to protect the immune
system of PLHIV. Ask if anyone has heard of Cotrimoxazole. Ask them what type of medicine
it is and what it is usually used for in Pakistan.
2. Introduce the concept of prophylaxis. Explain that although Cotrimoxazole is used to treat
infections in people (including PLHIV), in Pakistan you will be discussing its role as a means
of preventing infection. Explain that prophylaxis means protection. Say that just as the
condom can protect us from HIV transmission so Cotrimoxazole can partially protect PLHIV
from getting certain illnesses.
71
3. Begin the Powerpoint presentation. In the presentation, focus on the role of HIV caregivers in
supporting PLHIV to access to and adherence to Cotrimoxazole. Also ensure participants
understand dangers signs in PLHIV taking Cotrimoxazole and when to refer them. After the
presentation ensure there is time for Q&A. It is important that trainees are very clear on
Cotrimoxazole prophylaxis.
4. Next, present on the signs and symptoms of TB, importance of early diagnosis of TB in
PLHIV, treatment and side effects. If possible, ask a TB expert from the national TB program
to lead this session and provide resources from the national program.
5. Conclude with points regarding what HIV care providers can do to support early diagnosis
and treatment of TB and Cotrimoxazole prophylaxis.
6. Summarize and close the session.
Notes for the facilitator:
The benefits of using the common and affordable antibiotic Cotrimoxazole as a prophylaxis (a
medicine to prevent infections from occurring) in people with HIV have long been known.
Research shows that taking Cotrimoxazole can increase the length of life for adults and children
with HIV. The WHO recommend the use of Cotrimoxazole in PLHIV who are either symptomatic
or have a CD4 count of less than 350. All CHBC clients who are not taking Cotrimoxazole should
be assessed for eligibility. All HIV caregivers should make sure they ask their client’s clinical care
provider to assess their client for starting Cotrimoxazole prophylaxis. Here are some quick facts
on Cotrimoxazole prophylaxis.
a. Cotrimoxazole Preventative Therapy
 Why? Decreases the risk of acquiring some opportunistic infections.
 How? Taking Cotrimoxazole on a daily basis until the clinical care provider (doctor/
nurse practitioner) tells their client to stop.
b. When should someone start Cotrimoxazole Prevention?
 Anyone at Stage II or higher regardless of CD4.
 Asymptomatic with a CD4 count less than 350.
c. Which diseases does it help protect against?
 toxoplasmosis brain abscess
 pneumonia (from certain bacteria)
 PCP pneumonia - Pneumocystis pneumonia
 diarrhoea from Isospora belli
 fever and stomach symptoms (from Salmonella species)
d. How do you take it?
Drug regimen for Cotrimoxazole Prevention
 Cotrimoxazole 480 mg, 2 tablets daily (often called single strength pills)
or…

Cotrimoxazole 960 mg, 1 tablet daily (often called double strength pills)
72
e. How long? - Duration of Prophylaxis
 If an HIV-positive patient has no access to ART, Cotrimoxazole prevention should be
taken for the rest of his/her life.
 On ART, Cotrimoxazole can be stopped when the CD4 count has increased over a
period of time. But the decision to stop your client’s prescription will be made by their
primary clinical care provider.
f.
Cotrimoxazole Prevention Side-effects
 fixed drug rash
 Steven Johnson reaction - severe rash
 other new generalized drug rashes
 liver failure
 nausea
 haematological failure (blood problems)
o pale looking, feels very weak or dizzy (anaemia)
o decrease in white blood cells
o easy bleeding or bruising
 In these cases, Cotrimoxazole should be stopped and the patient referred.
Note: If side-effects are identified, refer the client to their prescribing doctor as soon as possible.
g. Follow-Up
 After prescribing Cotrimoxazole, the clinic should ask the client to come every month
for follow-up visits.
 Later, if the client is stable, the clinic may request the client come for follow-up visits
every three months.
 Attending a clinic on a regular schedule (adherence to care) and adhering to daily
Cotrimoxazole prophylaxis are good preparation for ART.
 These visits also provide the opportunity to monitor the patient’s clinical stage and
their need for ART.
h. CHBC Role in Cotrimoxazole Prevention
 Determine whether or not all new clients are taking Cotrimoxazole
If they are not taking it, refer them to the out-patient clinic in order to be assessed
for it.
If they are taking it, inquire about who made the prescription and where it was
made. Ask to see what the client is taking.


Provide adherence support to your client.
Look for side-effects. If you identify any problems, ensure you refer your client to their
prescribing doctor as soon as possible.
Note: Other prophylaxis medicines may be prescribed by the client’s doctor. These include fluconazole,
and medicines that prevent TB (such as Isoniazid or INH).
TB/HIV
Frequently asked questions about TB and HIV
73
What is TB?
Tuberculosis is a disease that usually attacks the lungs but can affect almost any part of the
body. A person infected with TB does not necessarily feel ill – and such cases are known as
silent or “latent” infections. When the lung disease becomes “active”, the symptoms include
cough that last for more than two or three weeks, weight loss, loss of appetite, fever, night sweats
and coughing up blood.
What causes TB?
TB is caused by the bacterium Mycobacterium tuberculosis. The bacterium can cause disease in
any part of the body, but it normally enters the body though the lungs and resides there.
How is TB spread?
TB is spread from an infectious person to a vulnerable person through the air. Like the common
cold, TB is spread through aerosolized droplets after infected people cough, sneeze or even
speak. People nearby, if exposed long enough, may breathe in bacteria in the droplets and
become infected. People with TB of the lungs are most likely to spread bacteria to those with
whom they spend time every day – including family members, friends and colleagues.
When a person breathes in TB bacteria, the bacteria settle in the lungs. If that person’s immune
system is compromised, or becomes compromised, the bacteria begin to multiply. From the
lungs, they can move through the blood to other parts of the body, such as the kidney, spine and
brain. TB in these other parts of the body is usually not infectious.
Is TB treatable?
Yes. TB can be cured, even in people living with HIV. DOTS are the internationally recommended
strategy for TB control.
DOTS treatment uses a variety of powerful antibiotics in different ways over a long period to
attack bacteria and ensure their eradication. Treatment with anti-TB drugs has been shown to
prolong the life of people living with HIV by at least two years. It is important that people who
have the disease are identified at the earliest possible stage, so that they can receive treatment,
contacts can be traced for investigation of TB, and measures can be taken to minimize the risk to
others.
However, some strains of bacteria have now acquired resistance to one or more of the antibiotics
commonly used to treat them; these are known as drug-resistant strains.
So TB is a growing concern for people working in the HIV and AIDS field?
Yes. It is estimated that one-third of the 40 million people living with HIV and AIDS worldwide are
co-infected with TB. People with HIV are up to 50 times more likely to develop TB in a given year
than HIV-negative people.
Another aspect of the resurgence of TB is the development of drug-resistant strains. These
strains can be created by inconsistent and inadequate treatment practices that encourage
74
bacteria to become tougher. The multi drug-resistant strains are much more difficult and costly to
treat and multi drug-resistant TB (MDR-TB) is often fatal. Mortality rates of MDR-TB are
comparable with those for TB in the days before the development of antibiotics.
What are the links between HIV and TB?
HIV and AIDS and TB are so closely connected that the term “co-epidemic” or “dual epidemic” is
often used to describe their relationship. The intersecting epidemic is often denoted as TB/HIV or
HIV/TB. HIV affects the immune system and increases the likelihood of people acquiring new TB
infection. It also promotes both the progression of latent TB infection to active disease and
relapse of the disease in previously treated patients. TB is one of the leading causes of death in
HIV-infected people.
How many people are co-infected with TB and HIV?
An estimate one-third of the 40 million people living with HIV and AIDS worldwide are co-infected
with TB. Furthermore, without proper treatment, approximately 90% of those living with HIV die
within months of contracting TB. The majority of people who are co-infected with both diseases
live in sub-Saharan Africa and Asia.
What is the impact of co-infection with TB and HIV?
Each disease speeds up the progress of the other, and TB considerably shortens the survival of
people with HIV and AIDS. TB kills up to half of all AIDS patients worldwide. People who are HIVpositive and infected with TB are up to 50 times more likely to develop active TB in a given year
than people who are HIV-negative.
HIV infection is the most potent risk factor for converting latent TB into active TB, while TB
bacteria accelerate the progress of AIDS infection in the patient.
Many people infected with HIV in developing countries develop TB as the first manifestation of
AIDS. The two diseases represent a deadly combination, since they are more destructive
together than either disease alone.




TB is harder to diagnose in HIV-positive people.
TB progresses faster in HIV-infected people.
TB in HIV-positive people is almost certain to be fatal if undiagnosed or left untreated.
TB occurs earlier in the course of HIV infection than many other opportunistic infections.
How much of a threat is TB?
According to WHO, TB infection is currently spreading at the rate of one person per second. It
kills more young people and adults than any other infectious disease and is the world's biggest
killer of women. In 1993, WHO declared TB to be "a global health emergency." Every year 8–10
million people catch the disease and 2 million die from it. About a third of the world's population,
or around 2 billion people, carry the TB bacteria but most never develop the active disease.
Around 10% of people infected with TB actually develop the disease in their lifetimes, but this
proportion is changing as HIV severely weakens the human immune system and makes people
much more vulnerable.
75
What is the impact of TB/HIV on women?
Worldwide, women bear a disproportionate burden of poverty, ill-health, malnutrition and disease.
TB causes more deaths among women than all causes of maternal mortality combined, and more
than 900 million women are infected with TB worldwide. This year, 1 million women will die and
2.5 million, mainly between the ages of 15 and 44, will become sick from the disease.
Once infected with TB, women of reproductive age are more susceptible to developing TB
disease than men of the same age. Women in this age group are also at greater risk of becoming
infected with HIV. As a result, in certain regions, young women aged 15–24 with TB outnumber
young men of the same age with the disease.
While poverty is the underlying cause of much infection in rural areas, poverty is also aggravated
by the impact of TB. In 1996, a study by the World Bank, WHO and Harvard University reported
TB as a leading cause of “healthy years lost” among women of reproductive age.
What can be done to combat the spread of TB?
The internationally recommended strategy to control TB, known as DOTS, has five components:
1.
2.
3.
4.
5.
political commitment to sustained TB control
access to quality-assured TB sputum microscopy
standardized short-course chemotherapy, including direct observation of treatment
an uninterrupted supply of drugs
a standardized recording and reporting system, enabling assessment of outcome in all
patients.
The Global Partnership to Stop TB is a global movement to accelerate social and political action
to stop the spread of tuberculosis around the world. The Stop TB mission is to increase access,
security and support in order to:


ensure that every TB patient has access to TB treatment and cure, and protect vulnerable
populations from TB
reduce the social and economic toll that TB exacts from families, communities, and
nations.
The Partnership's approach is a coordinated, multinational, multisectoral global effort to control
TB.
Why is more collaborative action on TB and HIV important?
HIV and AIDS is dramatically fuelling the TB epidemic in sub-Saharan Africa, where up to 70% of
TB patients are co-infected with HIV in some countries. For many years efforts to tackle TB and
HIV have been largely separate, despite the overlapping epidemiology. Improved collaboration
between TB and HIV and AIDS programmes will lead to more effective control of TB among HIVinfected people and to significant public health gains.
76
Session 2.4.1 Introduction to symptom care
Time: 30 min
Participants will be able to:
 Define symptom care vs. diagnosis and treatment (HIV
disease and medicine side effects)
 Explain why care and support workers provide symptom care
to PLHIV
 Describe the relationship between the symptom care/palliative
care provided by care and support workers and the diagnosis
and treatment of OIs provided by the OPC/IPD in the CoC
 List common HIV symptoms
Trainer Instructions:
Presentation 2.4.1
Methodology:


Brainstorming
Short presentation
Materials needed:




flipchart paper
coloured markers
symptom and diagnosis/treatment cards
‘Introduction to Symptom Care’ PowerPoint presentation
Handout 2.4.1:

List of common symptoms
Preparation:


Before the session, prepare one flipchart paper titled Common Symptoms in HIV. Prepare
a second one with ‘Symptom Care’ written on the top on the right-hand side and
‘Diagnosis and Treatment’ on the other.
Prepare five examples of symptom care, one per card. Also write five examples of
diagnosis and treatment, one per card. Have them ready for the exercise at the end of the
session.
Activities:
1. Begin the session by reviewing the learning objective for the session and then by asking if
any of the participants can quickly brainstorm common HIV symptoms.
77
2. Write participant responses on the board. Identify if any diseases that have been listed
during the brainstorming. Then ask participants to try to explain the difference between
the diseases listed on the board and the symptoms.
3. Summarize the comments given and help clarify the difference between symptom care
and diagnosis and treatment.
4. Present symptom care using the PowerPoint presentation or through guided discussion
and a prepared flipchart paper.
5. After the presentation, introduce the group activity. Divide participants into six groups.
Hand each group a card with either an example of symptom care or an example of
diagnosis and treatment. Ask participants to decide which category (symptom care or
diagnosis and treatment) their card goes in, and then ask them to come to the front of the
room and place the card on a pre-prepared flipchart sheet, which has one column for
symptom care and another column for diagnosis and treatment. Ask participants to stick
their card in the column they feel is the correct one. After all cards have been placed on
the wall, ask participants to review them and decide if any card is in the wrong column and
should be moved.
6. After participants have reached consensus on the card placement, review and correct as
needed. Explain why each card either describes symptom care or diagnosis and
treatment. Emphasize that the role of HIV care worker is to provide symptom care and to
teach PLHIV and families in how to manage their symptoms in the home. HIV care
workers will often help the client to relieve the suffering caused by symptoms, as well as
assist their client with getting assessed by a clinician. The clinician will hopefully be able
to identify what is causing the symptoms and treat the problem. HIV care workers can
continue to provide symptom care and medicine adherence support during this process.
Sometimes, HIV care workers will also treat minor problems such as scabies, but
treatment and diagnosis is limited to what the home-based care workers have been
trained to do.
7. Summarize the difference between symptom care and diagnosis and treatment, and the
role of the HIV care worker.
Notes for the facilitator:
Symptom care is defined as help provided to alleviate symptoms of a disease or problem, but not
in determining and treating the actual cause of the disease/problem. Diagnosis and treatment
need to be done by a trained provider, usually a doctor or nurse practitioner. Sometimes homecare teams provide diagnosis and treatment for very minor problems that the home-care team is
skilled in identifying, such as an infected wound, oral thrush, or scabies.
One example of the difference between symptom care and diagnosis/treatment would be in how
home-care teams approach supporting PLHIV to manage care in the home. The home-care team,
through the basic physical assessment, will learn that their client has acute diarrhoea. The homecare team will help prepare and explain the use of ORS, help prepare easily digestible foods for
the clients, and check for hygiene related problems in food preparation and water source. The
78
home-care team would also refer the client to the hospital for a check-up and diagnosis/treatment
of the diarrhoea.
Another example would be after a CHBC client had been diagnosed by their doctor/nurse
practitioner as having giardia (a bug that usually lives in contaminated water and causes
diarrhoea, bloating and gas) and prescribed medicines to treat the infection, the home-care team
would encourage and remind the client to take their prescribed medicines and continue to provide
symptom care for the client. This includes encouraging regular intake of ORS, eating good foods,
hygienic food preparation, and water intake.
Use the presentation to further discuss and define the difference between symptom care and
diagnosis/treatment.
Ask participants to try to raise other examples on the differences between symptom care, and
diagnosis and treatment, so they can share symptom care experiences, allowing the facilitator to
determine how clear these concepts are. After a few participants have raised examples, introduce
the group work.
Group work
Write each example on a large card of coloured paper. Then give one or two of the cards to
each group to determine which category they belong to: symptom care, or diagnosis and
treatment.









giving fluid (such as ORS) for diarrhoea
giving paracetamol for a fever
taking stool sample to the lab to determine whether or not your client has an
infection
giving strong medication for pain
discontinuing a medication because of rash
starting an antibiotic when patient has a cough
giving paracetamol/codeine for moderate pain
giving fluconozole for oral thrush
providing gentian violet for oral thrush
Answer sheet
Which category do the following belong to, symptom care, or diagnosis and treatment?









giving fluid (such as ORS) for diarrhoea (symptom care)
giving paracetamol for a fever (symptom care)
taking stool sample to the lab to determine whether or not your client has an
infection (diagnosis/treatment)
giving strong medication for pain (symptom care)
discontinuing a medication because of rash (diagnosis/treatment)
starting an antibiotic when patient has a cough (diagnosis/treatment)
giving paracetamol/codeine for moderate pain (symptom care)
giving fluconozole for oral thrush (diagnosis/treatment)
providing gentian violet for oral thrush (symptom care)
79
Activity
Test your knowledge!
Which category do the following belong to, symptom care, or diagnosis and treatment?










giving fluid for diarrhoea
giving paracetamol for a fever
taking stool sample to the lab
giving strong medication for pain
giving TB medicine if patient is too weak to go to the health facility
discontinuing a medication because of rash
starting an antibiotic when patient has a cough
giving paracetamol/codeine for moderate pain
giving fluconozole for oral thrush
providing gentian violet for oral thrush
Session 2.4.1a Managing pain in the home
Time: 1:15 h
Participants will be able to:
 Describe how to assess pain in clients
 Explain how to use the 10-point pain scale and how to treat
pain using the WHO Pain Treatment Ladder
 List medicines used to treat pain in the CHBC Kit and how to
use these medicines to treat pain
 Practice assessing pain including scaling the severity of pain
and making treatment recommendations
 Explain when HIV caregivers should refer clients in pain to the
HIV clinic or hospital
Trainer Instructions:
Handout 2.4.1a and Activity
Methodology:




Brainstorming
Short presentation
Demonstration and practice
Role-play
80
Materials needed:





flipchart paper
coloured markers
pain scale poster
WHO Pain Treatment Ladder poster
Examples of CHBC Kit analgesics: paracetamol, aspirin, and paracetamol/codeine
Handout 2.4.1a :

How to assess pain
Preparation:


Before the session, draw the 10-point pain scale on flipchart paper. Cover it so it is ready
for you to show when you reach the time to show the pain scale in the presentation.
Make photocopies of the IMAI Palliative Care Book so all participants have one copy. Use
this book as a reference for further information on assessing and treating pain.
Activities:
1. Introduce the learning objectives of the session.
2. Ask participants to describe different kinds of pain they have experienced in the past
(physical, emotional, social and spiritual). Ask participants to provide examples. List the
different forms of pain described on flipchart paper. Make the point that different people can
experience many different types of pain and that each person experiences pain differently.
Tell participants that pain is one of the most common symptoms experienced by PLHIV but
rarely assessed adequately by health care workers. Say that pain causes great suffering and,
by not assessing and addressing pain, we are not doing our duty in providing palliative care.
3. Then ask participants to describe how HIV caregivers can know whether or not their clients
are in pain. Explain that pain is subjective. We cannot tell what level of pain a client is in the
same way we can tell what level of fever a client has. Pain is what the client says it is.
4. Begin Powerpoint presentation. Use the pain scale drawn on flipchart paper to help explain
what treatment to provide depending on the type and severity of the pain identified by the
client. Emphasize the importance of always assessing pain on each CHBC visit. Ensure
participants feel comfortable with how and when to use paracetamol, aspirin, and
paracetamol/codeine.
5. Introduce case studies: place participants into groups of two (one is client and one is HIV
caregiver); give each client a different description of types and intensities of pain. Ask HIV
caregivers to assess and recommend treatment of pain of their client. Tell CHBC providers
they need to scale the pain. Tell participants that some of them will be asked to present their
assessment and pain recommendations in front of the class.
6. Select two pairs (one with moderate pain and one with severe pain) and ask them to role-play
the pain assessment. Ask for comments from participants and provide feedback as needed.
7. Summarize and close the session.
81
Notes for the facilitator:
Pain is very common in people with HIV AND AIDS. Studies show that 60 to 95 percent of PLHIV
will experience pain over the course of disease. However, while pain is one of the most common
and often most severe and distressing symptoms in HIV, it often goes untreated by health care
workers. This is because some health care workers feel that there are no reliable objective
measures of pain management, that there is no such thing as a “pain thermometer”. As with
many symptoms, the only way we can assess pain in our clients and then help them to address
the pain is by asking them just how much pain they are experiencing. WHO has tested and
validated very simple yet effective tools for assessing pain and providing medicines based on the
results.
Pain management: assess the patient for pain



See detailed assessment steps in handout.
Determine the cause of the pain by taking a history and doing a basic physical assessment
(for new pain and any change in pain):
Where is the pain? What makes it better/worse? Describe it. What type of pain is it? What
are you taking now for the pain?
Ask the client to grade the pain by scoring their pain from “0” (no pain) to the worst pain
they’ve ever felt (10). The number the client gives for their pain is very significant, as this is
your guide to determining what types of medicines to give them. Levels of pain can be
categorized as minimal pain (1-3), moderate pain (4-6), and severe pain (7-10). See the
analgesic ladder below.
Pain management: Treating pain




With (pain medicines) analgesics, according to the analgesic ladder
Reassess the need for pain medication and other interventions frequently.
Use the pain scale with clients every time you make a home visit.
Give pain medicines (analgesics):
By mouth
 If possible, give by mouth (rectal is an alternative, avoid intramuscular).
By the clock
 Give painkillers at fixed time intervals (by clock or radio or sun).
 Start with small dose, then incrementally increase dose against patient’s pain, until
comfortable.
 Next dose should happen before effect of previous dose wears off.
 For breakthrough pain, give an extra rescue dose (same dosing of the four-hourly
dose) in addition to the regular schedule.
By the individual
 Link first and last doses with waking and sleeping times.
 Write out drug regimen in full or present in a drawing.
82



Teach about drug use.
Check to be sure patient and family or caregiver understand treatment.
Ensure that pain does not return and that patient is as alert as possible.
By the analgesic ladder (see the following figure):
Use of opioids and non-opioid analgesics
Give only one drug from the opioid and non-opioid group at a time:*
*Exception: If no codeine is available or codeine is not tolerated, aspirin every four hours can be combined
with paracetamol every four hours but overlap administration so either paracetamol or aspirin is given every
two hours.
Analgesics
Starting dose in
adults
Range
Side-effects/ cautions
500 mg two
tablets every 4 to
6 hours (skip
dose at night or
give another
analgesic to keep
total to 8 tablets);
600 mg
(2 tablets of 300
mg) every 4
hours
Only 1 tablet may be
required in elderly or
very ill or when
combined with opioid.
Mild pain might be
controlled with every
6 hour dosing;
Do not exceed eight 500 mg
tablets in 24 hours (more can
cause serious liver toxicity).
Non-opioid
paracetamol (also
lowers fever)
Aspirin
(acetylsalicylic
acid) (also
anti-inflammatory
and lowers fever)
Avoid use if gastric problems.
Stop if epigastric pain,
indigestion, black stools
petechiae or bleeding; do not
give to children under 12 years;
avoid if presence of any
bleeding.
83
Ibuprofen (also
400 mg every 6
Max. 8 tablets per day
anti-inflammatory,
hours
lowers fever, good
for bone pain)
Opioid for mild to moderate pain (give in addition to aspirin or paracetamol)
Codeine (if not
available, consider
alternating aspirin
and paracetamol*)
30 mg every 4
hours
30-60 mg every 4 to
Give laxative to avoid
8 hrs. Maximum daily constipation unless diarrhoea
dose for pain 180Cost
240 mg due to
constipation - switch
to morphine
Opioid for moderate to severe pain – not necessarily available in Pakistan
Oral morphine* 5
mg/5 ml or 50
mg/5 ml. Drop into
mouth. Can also
be given rectally
(by syringe)
2.5-5 mg every 4
hours (dose can
be increased by
1.5 or doubled
after 24 hours if
pain persists)
According to need of
patient and
breathing; there is
NO ceiling dose
Give laxative to avoid
constipation unless diarrhoea
Activity 1
Provide these four scenarios to paired participants (one is client and one is HIV caregiver). Only
the client will see the scenario. The HIV caregiver will need to assess, scale, and treat pain based
on the scale. They will also need to make other recommendations (such as if referral is required).
Scenario 1: You have a chronic mild headache that bothers you. You have had it for about a
month. You would rate the headache as a “3” on the pain scale.
Scenario 2: You have all-over body pain that you rate as a “5”. You have had it for three days
and it is preventing you from sleeping.
Scenario 3: You have such terrible pain in your head. You can hardly stand it. You would rate it
as a “9” on the pain scale. It is almost the worst pain you have ever experienced.
Scenario 4: You have painful blisters on your side. You would rate the pain as a “6”. It is hard to
sleep because of the pain.
84
Session 2.4.1b Managing fever, diarrhoea, constipation, nausea and
vomiting in the home
Time: 1:45 h
Participants will be able to:
 define a mild, moderate, and severe fever
 explain how to care for fever in the home
 practice fever care
 describe how to use a thermometer to measure change in
temperature before and after fever care is given
 list danger signs requiring referral associated with fever
 define diarrhoea
 explain importance of hydration with fever, diarrhoea, and
vomiting
 practice making ORS
 list foods used to manage diarrhoea
 list danger signs associated with diarrhoea indicating referral
is needed
 describe how to manage constipation in the home
 list danger signs related to constipation requiring referral
 describe home-care techniques to reduce nausea and
vomiting
 list danger signs requiring referral associated with nausea and
vomiting
Trainer Instructions:
Handout 2.4.1b.1, 2.4.1b.2, 2.4.1b.3 and 2.4.1b.4 and
Activity
Methodology:




Brainstorming
Short presentation
Demonstration and practice
Role-play
Materials needed:







Flipchart paper
Coloured markers
Four CHBC kits
One Hygiene kit
Thermometers
ORS
Bottles of water
85


Spoons
Cups
Handout 2.4.1b.1, 2.4.1b.2, 2.4.1b.3 and 2.4.1b.4:




Taking care of fever in the home
Reading the thermometer
Managing diarrhoea
Providing care for nausea and vomiting
Preparation:


If possible, identify one to two co-trainers for this session who can help with demonstration
and with observing trainees. It is very important that CHBC trainees are able to correctly
practice these skills so the more co-trainers the more direct support participants will
receive.
Before the session, ensure there are enough thermometers and ORS for all participants to
practice with. There should be at least one thermometer per two participants.
Notes for the facilitator:
Activities:
Introduce the session learning objectives. Tell participants that the session will start with fever,
then move on to diarrhoea, and then focus on nausea and vomiting.
Fever
1. Refer back to Session 4.1 (Prevalence of symptoms in PLHIV). Ask if participants remember
the percentage of PLHIV who suffer from fever. Review the statistics, emphasizing that fever
is very common for all people but especially for PLHIV. Say that fever enhances discomfort
and pain so it is very important that we reduce fever to address suffering of our clients.
2. Ask participants if they can share what it feels like when you have a fever. Ask them if they
know why we get fevers. Show participants the definition of fever and possible causes. Ask a
participant to read the definition of fever and possible causes of fever aloud. Use the
Powerpoint presentation, prepared overheads, or flipchart sheets with definitions and causes.
3. Ask participants if anyone knows how to tell if someone has a fever. Ask participants to refer
back to the experience that participants had in Session 4.3 doing the basic physical
assessment in checking for fever.
4. Ask participants to quickly demonstrate what they learned in the previous session: back-ofthe-hand technique and using the thermometer.
5. Now ask three participants to volunteer and demonstrate to the group what they would do to
manage fever in the home. Make sure you choose participants who you think will be able to
demonstrate good fever care skills. Ensure participants learn how to sponge and how to use
paracetamol or aspirin to reduce fever and how to monitor fever over time.
6. Go through the steps of fever care with participants, including what to do when the fever is
40C or higher, or will not come down despite fever care.
86
7. Divide the participants in two groups, "A" and "B". Ask group "A" to write how to reduce fever
at home and group "B" when to refer for medical care.
8. Summarize main points: definition of fever; how to reduce fever.
9. Refer participants to the fever care section in their manual.
Diarrhoea
1. Introduce the diarrhoea session and refer to the learning objectives relating to diarrhoea and
diarrhoea care in the home
2. Ask participants if any of them have had any recent experiences with diarrhoea. Ask them
what they think caused the diarrhoea. Then ask participants if anyone can define what
diarrhoea is and what causes it? After a brief discussion, show participants the flipchart paper
with the definition and possible causes of diarrhoea. Explain that PLHIV are very vulnerable to
diarrhoea, which could be caused by many different pathogens or even medicines, and that
PLHIV can develop chronic diarrhoea (having diarrhoea over long periods of time). One of the
most dangerous aspects of diarrhoea is dehydration and loss of nutrients that may result from
it.
3. Demonstrate the examination for signs of dehydration. Invite a participant to a volunteer as a
patient. Explain that the person who is very dehydrated may be feeling irritable or lethargic.
The skin may go back slowly when pinched. Urination will decrease in volume and frequency
and its odour will become stronger and unpleasant. It is important that anyone suffering from
diarrhoea gets enough liquids to make up for water lost in their stools. It is key that the
caregiver knows when the situation is too dangerous and when to refer a patient to a health
professional.
4. Ask if anyone knows how to prepare ORS. If a participant volunteers, have them come up to
the table and demonstrate making ORS for the group. If no one volunteers, demonstrate the
procedure of making ORS. If there is time, ask teams of two participants each to work
together in preparing ORS themselves. Walk around the room to observe them practicing and
provide support as needed.
5. Divide participants into two groups. Ask group "A" to list the foods to use to manage
diarrhoea, and group "B" to write down when to seek medical treatment for diarrhoea.
6. Summarize
Constipation
1. Explain that constipation is not that common in PLHIV but can happen related to taking
opioids for pain, or as the result of body functions slowing and the digestive system not
working as efficiently as it did before. Emphasize use of home remedies: fibrous foods,
consuming lots of water, taking natural laxatives such as senna. If the client has not passed
stool in three days or complains of pain even if it seems like they have diarrhoea, they need to
be referred to the HIV clinic or hospital.
Nausea and vomiting
87
1. Introduce the nausea and vomiting and refer to the learning objectives relating to their care in
the home
2. Ask participants if any of them have had any recent experiences with nausea and vomiting.
Ask them what they think caused it. Then ask participants if anyone can define what nausea
and vomiting and what causes it? After a brief discussion, show participants the flipchart
paper with the definition and possible causes of nausea and vomiting. Explain that PLHIV are
very vulnerable to nausea and vomiting, which could be caused by many different pathogens
or even medicines. One of the most dangerous aspects of vomiting is dehydration and loss of
nutrients that may result from it.
3. Describe home-care for nausea and vomiting. Refer to the IMAI Palliative Care Book and
Participant Handbook.
Summarize the session:



managing fever at home
managing diarrhoea and constipation at home
managing nausea and vomiting at home
Common symptoms - Fever 3
Symptoms:
 Body feels hot
 Body aches; uncomfortable all over
 Increased sweating
What to do at home?
 Use a thermometer if one is available and measure the client’s temperature.
 If there is no thermometer available, you can still get an idea of whether or not someone has
a fever. Put the back of your hand on the person's forehead and put the back of your other
hand on your own forehead. If the person has a fever, you should be able to feel the
difference.
 To lower a fever:
 Remove any unnecessary clothing and blankets. Fresh air is not harmful and helps
to lower the fever.
 Cool the skin by sponging the client, putting cloths soaked in room-temperature
water on the forehead, armpits and groin of the client. In addition, you can fan the
client or just wipe the skin with wet cloths and let the water evaporate.
 Use medicines that reduce fever, for example, aspirin, paracetamol or Ibuprofen,
usually two tablets every four to six hours. For children, the dose is lower and
depends on size (weight) or age. (It is better not to use aspirin for children under 6
years old).
CEDPA. “Home Care for People Living with HIV AND AIDS: The Power of Our Community.” V:3, pp 3-42.
CEDPA: Washington, DC. 2004.
3
88


In between bathing and cooling the skin to lower the fever, keep the skin clean and
dry.
Use lotions or powders to prevent skin problems such as rashes, sores, sore
areas, or broken areas.
Possible causes of fever:
 A fever is not a disease in itself but a sign that there is an infection somewhere in the
body. A slight fever can be a sign that the body is "burning off" the infection, but a high
fever can be dangerous, especially in small children.
 In people living with HIV AND AIDS, fevers often come and go. It is difficult to know
whether the fever is a symptom of a treatable infection or whether it is due to the HIV
infection itself. The causes of fever can include
o AIDS-related opportunistic infections, which might include anything from
diarrhoea to tuberculosis
o endemic diseases, such as malaria
o HIV infection itself
When to seek medical treatment for a fever:
 the person has a very high fever (102F or 39C or higher)
 the fever continues for a long time
 the fever is accompanied by coughing and weight loss
 the fever is accompanied by symptoms such as stiff neck, severe pain, confusion,
unconsciousness, yellow colour in the eyes, sudden severe diarrhoea, or convulsions
 the person has recently had a baby or is currently pregnant
 the person lives in an area where malaria is common and the fever has not gone away
after one treatment with anti-malarial medicine; discourage people from treating
themselves repeatedly with such medicine
Common symptoms – Diarrhoea
Symptoms:
 Frequent bowel movements
 Stools are usually clear and watery, may be accompanied by pain in the abdomen and
cramping
 Stools smell strongly or pass noisily, as well as being loose and watery
 Three or more loose or watery stools in a day
What to do at home?
 Encourage the person to drink more fluids than usual to prevent dehydration. You might
wish to ask a health care professional for the most appropriate fluids to drink in your area,
but as a rule, some of the best options include ORS, unsweetened juices, coconut water,
and weak tea or food-based fluids such as gruel, soup, or rice water. The person should be
encouraged to drink as much as possible, and may need to force himself/herself to drink
even when not feeling thirsty. It may be helpful to keep a glass of clean water nearby and
to sip some every five to ten minutes. Make sure to boil water for 10 minutes and cool if it
is possible that the water may not be clean.
 In the case of breast-fed infants with diarrhoea, the mother should continue to breastfeed
and try to do it more often than normal (at least every three hours). Encourage the mother
to drink more than usual, even when she's not feeling thirsty.
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









It is especially important to encourage children with diarrhoea to drink. Give children under
2 years old about a quarter to a half of a large cupful of fluid after each loose stool. Give
older children one-half to one large cupful after each loose stool. You may have to use a
spoon to get the child to take enough liquid.
Encourage those with diarrhoea to continue to eat. If people try to stop eating when they
have diarrhoea, this can cause malnutrition or make existing malnutrition worse. It will not
decrease the diarrhoea. The fluids taken in do not replace the need for food. It is important
for people to take in the nutrients needed to stay strong and prevent weight loss: a strong
person will resist illness better. Even if someone does not feel hungry s/he should eat small
amounts of nutritious and easily digestible food frequently. After the diarrhoea has stopped,
an extra meal each day for two weeks will help to regain any weight lost during the illness.
It is especially important to encourage young children with diarrhoea to eat. Some children
will continue to need extra food after the diarrhoea has gone for sometime to make sure
they regain any lost weight. Easily digestible foods that are usually available include rice,
bananas and dry bread.
Advise people to eat foods with the largest amounts of nutrients and calories. These
should be mixes of cereal and locally available beans, or mixes of cereal and meat or fish.
Dairy products, eggs, and bananas are also suitable. Very diluted soups are recommended
as fluids, but are not sufficient as foods because they fill you up without providing sufficient
nutrients.
Advise people to avoid:
 high-fibre or bulky foods, such as fruit and vegetable peels and whole grain
cereals; these are hard to digest
 foods or drinks containing a lot of sugar, such as commercial soft drinks, as they
can worsen diarrhoea
Prepare foods by cooking well, then mashing or grinding them to make them easier to
digest.
Try to make sure that people take food every three to four hours at least (about six times
each day). Food should be given more often to young children with diarrhoea.
Recognize and treat dehydration early. Signs of dehydration include feeling irritable or
lethargic, or if the skin goes back slowly when pinched. Urination will decrease in volume
and frequency and its odour will become stronger and unpleasant. If these signs are
noticed, give the patient ORS, which can be obtained from the local health centre.
Dissolve the contents of the packet in the amount of clean water indicated on the packet.
Not all packets are the same size so people will have to read the instructions to be sure
how much water to add. If they use too little water, the drink could make the diarrhoea
worse. If they use too much water, the drink will be less effective. If clean water is not
available, then you may need to boil the water and let it cool before mixing the ORS. The
mixture should be stirred well and then drunk the same day it is prepared. If ORS
packages are not widely available you should advise people that they can still make a
suitable solution at home. You should advise on the recipe for the solution used in your
country or the recipe in this manual.
Discourage the use of medicines at home to control diarrhoea.
For severe stomach cramps that sometimes accompany diarrhoea, paracetamol may be
helpful.
Other problems that may accompany diarrhoea include:
 Skin irritation in the rectal area; to prevent or treat sore or broken skin you should advise the
person who is ill to
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


clean the rectal area gently with water after each bowel movement; pat the skin
dry
apply petroleum jelly or a water-based lotion to help relieve discomfort and protect
the skin
sit in warm water containing a little pinch of salt three or four times a day; this may
also relieve the discomfort
Haemorrhoids can develop after the diarrhoea has been present for sometime. They are
caused by a weakening of the walls and blood vessels of the rectum. The tissues around the
anus become very sore and itchy. The blood vessels may become very tender and may
bleed - small amounts of blood may be noticed in stools or during cleaning of the rectal area.
Trying to relax during bowel movements and not straining or pushing too hard to pass the
stools can prevent haemorrhoids. Sitting in a bath may help to ease the discomfort, and
paracetamol can be taken to relieve the pain. Remember to use gloves or other protective
gear when bathing someone who may have bleeding haemorrhoids.
To help someone with diarrhoea who cannot get out of bed, use a bedpan or other suitable
plastic or metal container. Be sure it is not too high and can be used by slipping it under the
person in bed. Empty the contents frequently. Do not use this container for any other
purpose once it has been used as a bedpan. Change wet or soiled bedding immediately to
prevent damage to the skin.
Possible causes of diarrhoea:
Diarrhoea is very common in people living with HIV and AIDS. There are two types:
 acute diarrhoea lasts for less than two weeks
 persistent diarrhoea is when someone has more than three liquid stools a day every day for
more than two weeks
If loose or watery stools also contain blood, the diarrhoea is called dysentery.
The most common causes of diarrhoea in people living with HIV are:

intestinal infections from food or water that is not clean and fresh

opportunistic infections related to AIDS

side-effects of some medicines
The two main dangers of diarrhoea are dehydration and malnutrition
Dehydration is the loss of a large amount of water and salt from the body, which if not treated can
cause death. In a healthy person, the body regulates the amount of water and salts it needs by a
two-way process. It takes in water and salts from the urine, and sweat. In a healthy person there
is a balance between intake and output. When someone has diarrhoea, however, the intestines
do not work normally and this balance breaks down. Increased amounts of water and salts are
passed into the intestines and the output of water and salts becomes greater than the intake. This
results in dehydration. The greater the frequency of diarrhoea the more water and salts are lost.
Vomiting can also cause dehydration, which often accompanies diarrhoea. Dehydration occurs
faster in infants and young children, in hot climates, and in people who have fever.
Diarrhoea can cause malnutrition or make it worse because
 nutrients are lost from the body in the stools
 people with diarrhoea often do not feel hungry
91

some think wrongly that they should not eat when they have diarrhoea, or even for some
days after the diarrhoea lessens
To prevent diarrhoea:
 Drink clean water. Boil water that is to be used in making food or drinks. The water need
only boil for a few minutes. Drinking water from a dirty well, or water kept in a dirty
container, can cause diarrhoea.
 Eat clean, safe food. Eat freshly prepared foods. Make sure that raw foods are washed in
clean water and that cooked food, especially meat, has been cooked properly. Badly
washed food, or food not protected against dirt, files, and animals can be unsafe to eat
because it can become contaminated with disease-causing organisms. If previously
cooked foods are to be eaten, make sure they have been stored safely and reheated
thoroughly at a high temperature.
 Clean your hands. This is particularly important. People should always wash their hands
after using a latrine or toilet, after helping somebody else use the latrine or toilet, after
cleaning soiled children or people who are ill, and before preparing food or drink for
themselves or other people.
When to seek medical treatment for diarrhoea
People are at risk of dehydration and should seek help if they have diarrhoea and

are very thirsty

have a fever

cannot eat or drink properly

do not seem to be getting better

pass many watery stools

see blood in the stools

are vomiting and can not retain fluids
Help should be sought quickly if signs of dehydration have already developed such as:

the person is extremely thirsty

the person is in an irritable or lethargic state

the skin returns slowly after pinching

in an infant, if the soft spot on the head sinks in
Remember that traditional healers often have effective herbs to replenish the body's nutrients. Try
to verify that the traditional healer is reputable before recommending them.
Common symptoms - Constipation
Introduction
This symptom is not as common as the others but it can happen to PLHIV. It is common in those
who do not drink enough fluids, eat fibrous foods or get much exercise. PLHIV who are bed
bound can suffer from constipation do to lack of movement and illness affecting the body’s ability
to manage waste efficiently. It can also be due to medicines with side effects causing constipation
such as deprogesic/ diagesic (paracetamol and codeine).
Care



support the client to increase intake of water
provide advice on foods which are high in fibre such as fresh fruits and vegetables
moving around and getting exercise can help to stimulate the bowels
92
When to seek medical treatment for diarrhoea

if the client has not been able to pass stool for three days

if the client has sever pain in the abdomen

if the client has diarrhoea but also complains of feeling constipated

if there is blood in the stool
Common symptoms - Nausea and vomiting
Providing care for nausea and vomiting
Nausea and vomiting are common in PLHIV. They are dangerous because they reduce the
amount of liquids and foods consumed and can results in severe dehydration.
Symptoms
• Feeling sick to the stomach
• Feeling unable to eat
• Vomiting
Possible Causes of Nausea and Vomiting:
Nausea and vomiting can be an important problem for people living with HIV AND AIDS.
These symptoms may be caused by:
- Medicines (e.g. ART)
- Infections
- A problem with the stomach or intestines
- Kaposi’s sarcoma in the intestines
- HIV infection itself
In some people, nausea and vomiting are very short-lived, and go away by themselves or after
treatment of the cause. In others, they are chronic or long lasting and become a part of daily life.
What to Do in the Home:
• If a person is having trouble with nausea and vomiting, advise them to
- Avoid cooking smells if possible
- Watch out for dehydration (see the discussion of diarrhoea above)
- Talk to a health care worker, who may prescribe medicine to control the symptoms if
they are very severe, in order to allow the person to eat
If someone is vomiting severely, they should:
- Not eat any food or drink any fluids for one to two hours
- Then gradually start drinking room-temperature water, oral rehydration solution, weak
tea, or other clear liquids (about two tablespoonfuls an hour for two or three hours), or
suck ice in small amounts
- Then increase the amount of fluids to four to six tablespoonfuls an hour for two to three
hours; the amount can be increased as desired but people should force themselves to
keep taking fluids to make up for what they have lost
- As the nausea decreases, people should increase the amount and types of foods they
eat; it may be best to start with small quantities of dry, plain foods such as bread, rice, or
cassava
- Frequent care of the mouth will remove the foul taste and freshen it; this can include
rinsing the mouth with clean water, or gently scrubbing the tongue and gums with a soft
93
toothbrush or cloth at least three or four times a day, then rinsing with diluted
mouthwash or lemon water rinse
- Ventilating or freshening a room may make a person feel better and less nauseated
- It is also a good idea for people to identify and reduce the things that seem to make
them feel nauseated, such as specific odours, medicines, or foods (high fat foods, for
example)
- A cool compress applied to the forehead, or other things that help someone to relax,
may be useful
When to Seek Medical Treatment for Nausea and Vomiting
 If vomiting occurs repeatedly and fluids cannot be kept down, the person who is ill is at risk of
becoming severely dehydrated.
 If regular vomiting lasts more than 24 hours, particularly if it is accompanied by pain in the
abdomen.
 If the person has a fever in addition to the vomiting.
 If the person who is ill vomits violently, especially if the vomit is dark green, brown, or smells
like faeces.
 If the vomit contains blood.
94
Session 2.4.1c Managing cough and difficulty breathing
Time: 1:30 h
Participants will be able to:
 list common causes of cough and difficulty breathing in PLHIV
 explain how to care for coughing in the home
 list danger signs that indicate referral to the hospital
 describe signs and symptoms of TB
 explain the role of CHBC providers in supporting TB
screening, treatment, and adherence
Trainer Instructions:
Handout 2.4.1c and 2.3.5.2 (if not distributed earlier) and
Activity
Methodology:



Brainstorming
Short presentation
Demonstration and practice
Materials needed:





Flipchart paper
Coloured markers
Four CHBC kits
TB treatment packet
Medicate balm
Handout 2.4.1c and 2.3.5.2:


Managing cough and difficulty in breathing
TB and HIV
Preparation:

Invite a guest speaker from the national TB program or a TB health care worker to present
on TB diagnosis and treatment in PNG and the role of community supporter such as HIV
caregivers.
Activities:
1. Introduce the session learning objectives. Tell participants that the session will include a
guest speaker.
2. Refer back to session 4.1 (Prevalence of Symptoms in PLHIV). Ask if participants remember
the percentage of PLHIV who suffer from cough and difficulty breathing.
3. Review the statistics, emphasizing that respiratory infections are very common and can be
very dangerous for PLHIV. Ask participants to brainstorm common respiratory infections in
95
PLHIV. They should list TB, PCP, and other forms of pneumonia, bronchitis, flu, and
common cold.
4. Ask participants if they remember how some respiratory infections can be prevented. Review
the importance of Cotrimoxazole prophylaxis.
5. Review danger signs. When the client is gasping for breath, when the respiration rate is
higher than 30, when they are coughing up blood. These all indicate immediate referral.
6. Then present on home-care for mild to moderate respiratory infections. This includes
positioning the client to facilitate breathing, steaming to speed up removing of phlegm, and
helping the client to make local teas to sooth the throat.
7. Have participants practice positioning the client for better breathing (such as Fowler's
Position - 45o sitting position).
8. Summarize and then introduce the guest speaker.
9. Present on TB in PNG and the role of HIV caregivers in supporting clients who are part of the
TB program.
10. Facilitate a Q&A with the guest speaker.
11. Summarize and close the session.
Notes for the facilitator:
Symptoms:




Chronic cough
Shortness of breath
Chest pains
Increased production of mucus (also called sputum)
Prevention:




Eating nutritious food
Getting enough rest and exercise
Avoiding people who have coughs and colds
Not smoking
What to do in the home:

Keep the person active by walking about, turning in bed, and sitting up. This encourages
the lungs to drain.

Other measures that encourage drainage of the lungs include massage or gentle patting
on the back over the lungs. This can be done with the person lying face down, his/her
head turned to one side resting on a towel to absorb the mucus. Someone in the home
can do this, especially for younger children.
96

If pain is felt in the chest or ribs during coughing, a pillow or hand should be held tightly
over the area that hurts when coughing. This makes the cough less painful.

During the day it may be beneficial to cough and clear the lungs at least four times a day.
Even though coughing may cause discomfort, it is an important way to clean the lungs of
the accumulated mucus and disease-causing bacteria.
Note
As a CHBC worker, remember to cover your mouth whenever you cough and to ask
clients with cough to do the same to prevent the spread of the germs to other people.



Thus, anyone with lung problems should be encouraged to cough. Several points are
worth mentioning:
The bacteria or infectious agents in the person’s sputum can be passed to other people
through the air, especially when coughing. When anyone is coughing, they should always
cover their mouth with their arm or with a cloth, which can be cleaned or disposed of.
All homes and other places where people meet should be ventilated. Make sure there is a
way in and a way out for fresh air.

An irritating cough can sometimes be relieved with safe cough remedies, for example
- Soothe the throat by drinking tea with sugar or honey.
- Use a safe, home-made cough syrup. Throughout the world, families and
herbalists have suggestions for things that soothe coughs.
- Commercial remedies may also be useful although they are often expensive and
usually work no better than home remedies.

A constant cough can be very tiring and interfere with a person’s rest. If coughing keeps
someone awake at night a cough suppressant can be prescribed. Since it is important to
cough, do not encourage the use of cough suppressants during the day. However, they
should be used at night to allow someone to rest.

While it is not often known, pain in the chest without signs of infection, and difficulty in
breathing, are common problems in people with AIDS. Warm compresses (pads or folded
towels) to the area where the discomfort seems to be centered may be helpful. Medicines
like aspirin or paracetamol (which is safer for children), may also be useful. It is important
that the actions done to help relieve the pain will also help someone in their efforts to keep
active, moving, and coughing.

When someone is experiencing difficulty breathing, they should try to follow the measures
below:
- Lie with pillows under the head, or with the head of the bed raised on blocks.
- Sit leaning forward with the elbows on the knees or on a low table.
- Have someone else there. Difficulty in breathing can be very frightening.

Play games or tell stories, which can usually distract someone from their coughing
“spells.” In children with respiratory problems, it is important to clear the nose if it is
congested, especially if the congestion interferes with the ability to eat or to be breast-fed.
Dry or thick, sticky mucus can be softened and removed with a wick or twisted piece of
cloth moistened in clean salt water (a quarter teaspoon in a cup of clean water).
97

In a lung infection with cough, it is important that plenty of fluids are taken to replace the
extra fluids lost through the lungs by rapid breathing and to help keep the mucus in the
lungs from becoming too dry and sticky and more difficult to expel. Remind parents that
fast or difficult breathing in children may be dangerous and require immediate medical
treatment.

Encourage children with respiratory problems to take more fluids by increasing the
frequency of breast-feeding or by giving additional fluids by spoon or cup.
Possible causes of coughing and difficulty in breathing:
Respiratory problems, particularly lung infections, are common and can be quite serious. The
most common causes of respiratory problems include
• colds and flu
• bronchitis
• pneumonia
• tuberculosis
• heart problems
• asthma
When to seek medical treatment for coughing and difficulty in breathing:







respiratory rate is more than 30 breaths per minute
the client is struggling to breathe
the onset of fever or a change in the regular fever pattern of the person who is ill
severe pain or discomfort
blood in the sputum
a sudden or rapid worsening in their ability to breathe or catch their breath after normal
activity
a change in the colour of their sputum from clear to gray, yellow, or green
If the problems experienced with coughing, chest pain, or other respiratory symptoms are chronic
(lasting more than three weeks) and do not respond to antibiotic treatment, tuberculosis may be
the cause and should always be considered.
In children (particularly below the age of five) respiratory infections can be very serious. All
children should be brought to a health care worker for immediate attention if they are

breathing with difficulty through the mouth or with audible wheezing (squeaking sound
as they inhale or exhale

breathing faster than usual

unable to drink because of problems breathing
98
Important
Coughs that do not get better
 If a cough lasts for more than two weeks, it may be a sign of tuberculosis (TB).
 TB is a common infection among people who have HIV.
 TB can be very dangerous to your health and can be transferred to other people.
All people with HIV need to be tested for TB whether or not they are experiencing a
chronic cough.
Signs and Symptoms of TB
 a cough lasting more than two weeks
 weight loss and weakness
 sputum with blood
 night sweats
 loss of appetite
 swollen glands in the neck, armpits, etc. that do not go away
 severe pain and abdominal swelling; this can mean abdominal TB
 a headache that does not go away
TB is curable; below are some facts about the treatment:
 TB can be successfully treated. All people with HIV should be screened for TB
whether or not they are experiencing a chronic chough.
 TB takes eight months or more to cure.
 Must take TB medicines in the correct dose, at the right time, and for the correct
number of months.
 TB medicines only work if they are taken correctly.
 Treating TB incorrectly or missing doses of your medication is dangerous to your client
and others.
 If TB medicines are not taken correctly, TB infection will not be cured.
 If medicines are not taken correctly, TB germs will become resistant to the medicines.
Becoming resistant means the medicines will not be able to kill the germs.
 These resistant germs can spread to others. Someone with resistant TB may not be
able to be cured and may die.
Remember: The HIV caregiver provides vital support to clients with TB, helping them to
take their medicines on time and to successfully complete their course of TB treatment.
99
Session 2.4.1d Managing skin and mouth problems
Time: 1:50 h
Participants will be able to:
 List the common skin problems
 Explain why it is important to care for the skin of PLHIV
 Demonstrate skills in skin and nail care and wound dressing
 Provide symptom care of common skin problems:
 Herpes zoster
 Open wounds
 Itchy skin
 Oral thrush
 Provide symptom care for pain common in people with skin
problems
Trainer Instructions:
Presentation 2.4.1 Slides 16-37, Handout 2.4.1d.1 and
2.4.1d.2 and Activity
Methodology:



Brainstorming
Short presentation
Demonstration and practice
Materials needed:



Flipchart paper
Coloured markers
Four CHBC kits
 hand washing materials (soap, towel, basins)
 gloves
 clean cotton swabs
 dressing and tape
 gentian Violet
 iodine
 salt
 clean water
 bowl or glass (2)
Handout 2.4.1d.1 and 2.4.1d.2:


Caring for the skin problems
Managing mouth problems
Preparation:
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
Identify all the skin and mouth supplies needed in the home-care kit and have them
ready to demonstrate (1) skin care, (2) cleaning a wound, and (3) oral care and treatment
of thrush.
Activities:
1. Introduce the learning objectives of the session.
2. Ask participants if they know what the body’s largest organ is. Explain that skin is the body’s
largest organ; it is like an enormous condom that protects the body for all sorts of germs that
can make us sick. Then ask participants if they can remember what percentage of PLHIV
develop skin problems over the course of HIV disease (~90 percent).
3. Since skin problems are so common among PLHIV, ask participants to brainstorm ideas
regarding what can be done to prevent skin problems. Refer to facilitator notes for ideas on
what can be done by PLHIV and HIV caregivers to promote healthy skin and prevent
infections.
4. Next, invite participants to share experiences they have had either with their own skin
problems or in caring for others with skin problems. List common skin problems on news print.
Remind participants that over time HIV reduces the strength of the immune system. As PLHIV
progress into AIDS, they will have more skin problems.
5. Then ask participants to briefly brainstorm on common mouth and throat problems and what
can be done to try to prevent these problems in the home.
6. Divide participants into four groups and assign different skin problems to each:
 cleaning an infected wound
 managing herpes zoster and pain (note: details on pain care are found in end-of life
care)
 caring for scabies
 caring for dry and itchy skin and oral thrush
Each group will be responsible for using the home-care kit contents to prepare a role-play of how
they would manage the specific skin problem. They will have 15 minutes to prepare their roleplay and five minutes to perform. Facilitators will need to work with each group to provide them
with instructions on how to prepare their role-play demonstration using the correct technique.
Also ask participants to refer to the Participant Handbook for steps in caring for these problems.
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Present the group work. Discuss feedback. Ask if any of them have experience with
these skin problems. What did they do to manage the problems?
Present the group work and discuss feedback.
Plenary presentation on skin and mouth problems, including their prevention and
management. Ensure that danger signs and when to refer are highlighted in the
presentation.
Summarize.
Notes for the facilitator:
Caring for skin problems
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People with HIV often have skin problems like rashes, itchiness, dry skin, and ulcers (about 90
percent will have some form of skin problem). These problems can be caused by germs and
bacteria, fungus or viral infections, medicines you are taking, and even by lying in bed in the
same position for too long. Some skin problems are chronic; they last a long time and are difficult
to treat. But most skin problems can be helped with the right care and treatment.
Symptoms:
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

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Rashes
Itching skin
Painful sores on the skin
Increased dryness of the skin
Slow healing of wounds
Boils and abscesses (red, raised, painful lumps on the skin) usually on the groin, buttocks,
armpits, back, and upper legs
What to do in the home:

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

As a general rule, cleaning the skin frequently with soap and water and keeping it dry
between washings will prevent the most common problems.
Almost all skin problems involve the sensation of itching. Scratching the itching skin with
fingernails can make things worse, either by breaking the skin or by introducing or
spreading infection. Keeping nails short can avoid this. Try to encourage people not to
scratch any type of skin lesion or sore. However, rubbing with the flat of the fingers or
gentle slapping can give some relief.
Itching can be reduced in a number of ways, including:
 cooling the skin with water or fanning it
 applying lotions, such as calamine, that are soothing and prevent the skin from
becoming too dry; If the calamine or other lotion is cooled before application it will
provide a soothing sensation when applied to the skin
 not letting the skin get hot and not applying warmth to itching areas
 using effective traditional remedies that are available locally from an herbalist or
traditional healer
If people have trouble with very dry skin, they may have to avoid soaps and detergents
and use bath oils and skin creams as much as possible. Vaseline (petroleum jelly),
glycerine, and vegetable or plant oils can be as effective as the more expensive oils and
creams sold in the shops.
To prevent babies or someone who is confused from scratching themselves, cut their
fingernails very short or put gloves or socks over their hands.
For children in diapers/nappies who have diarrhoea rash or yeast infections, the buttock
area will need special care.
 Leave the baby’s bottom exposed to air as much as possible.
 Soak the baby’s bottom with warm water between diaper changes.
 Do not let the child remain in wet diapers or cloths, but remove or change
 them as soon as they become soiled.
 Avoid wiping the buttocks area; instead squeeze water from a wash cloth or pour
water over the area and then pat dry
 Use simple lotions provided by a health care worker or pharmacist as this may
help cure rashes in the diaper area, particularly if they are treated early.
 Do not forget to wash both your hands and the baby’s afterwards!
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Uninfected wounds




Wash the affected areas with clean water, preferably water that has been boiled and
cooled, mixed with a little salt (one teaspoonful of salt to one litre of clean water) or
gentian violet solution (one teaspoonful of gentian violet crystals in half a litre of clean
water).
Protect by covering with clean gauze bandages or cloth wrapped loosely.
Put warm compresses of weak salt water on the area four times a day (one teaspoonful of
salt to one litre of clean water).
If the wound is on the legs or feet, raise the affected area as high and as often as
possible. During sleep it should be on pillows. During the day, try to raise the foot for five
minutes every 30 minutes. Walking helps the circulation, but standing in one place or
sitting with the feet down for long periods is harmful.
Infected closed wounds


Once someone notices a red lump under the skin they should start using warm
compresses over the area for 20 minutes, four times a day. The warmth of the
compresses will help the boil or abscess “mature” or to form and harden and drain its
contents.
If they are having a great deal of pain and the boil or abscess continues to get bigger
without draining (or opening out onto the skin), they should seek help. The wound may
require drainage and treatment with antibiotics.
Infected open wounds
If wounds are not cared for properly they can become infected. A wound is infected if:
- it becomes red, swollen, hot, and painful
- it has pus either draining from it or visible under the skin
- it begins to smell bad
The infection is spreading to other parts of the body if:
- it causes fever
- there is a red line running out from the wound
- the lymph nodes under the skin in the neck, armpits, or groin become swollen and tender
Advise people to treat infected wounds as follows:
- a salt wash (one teaspoonful of salt in one cupful of clean water)
- if there is pus or dead tissue, hydrogen peroxide can be used to rinse the wound
- use a gentian violet solution on the wound before applying dressings
If the wound is on a hand or foot, soak it in a bucket of hot water with soap or potassium
permanganate (one teaspoonful of potassium permanganate to a bucketful (four to five litres) of
clean or boiled water. Do not exceed the recommended amount; if the solution is too
concentrated it can burn or irritate the skin); be sure that any compress or water applied to the
wound is not too hot, since damaged skin can easily burn.
When it is not being soaked, keep the infected part at rest and elevated (raised above the level of
the heart).
Washing or cleaning an infected wound and applying dressings

Use gloves, plastic bags, or a large leaf when handling cleansing cloths or dressings to
avoid touching blood from the wound, and wash your hands afterwards with soap and
water.
103





Wash around the edge of the wound first. Then wash from the centre out to the edges
using separate, small pieces of clean cloth or clean cotton for each wipe if possible.
Cover the area with a clean piece of cloth and bandage if the wound has pus or blood. If
the wound is dry, it can be left exposed to the air - it will heal quicker that way.
Dressings are used to cover wounds to prevent them from becoming infected, to protect
other people from infection, to keep medicines in place or to avoid painful contact with the
environment.
- Never apply a dressing tightly.
- Make sure dressings are clean.
- Change the dressing at least once a day; be sure to look for signs of infection
After changing the dressing, rinse the soiled cloth and bandages in water and soap and
put them in the sun to dry or put them in boiling water for a short period and hang them to
dry. If the dressings are not to be reused, always dispose of them properly by burning
them or putting them in a pit latrine.
If soil or dirt gets into the wound it can become infected with bacteria that cause a serious
disease called tetanus (lockjaw). You should therefore ensure that people are fully
immunized against tetanus. Even if they have been immunized for tetanus before, they
may still need further immunization. Advise people who are not immunized against
tetanus to seek medical help immediately if they are wounded or develop open sores.
Shingles
Shingles (herpes zoster) is a viral infection that used to be seen only in older people or in those
with weakened immunity for various reasons. Now shingles is very common in people living with
HIV and AIDS and may be one of the first symptoms they have of HIV infection or of AIDS. If
shingles is identified in a client, refer them as soon as possible as there is generally treatment
available at major hospitals and HIV clinics.
Shingles begins as a painful rash with blisters, usually on the face, limbs, or trunk. On the face, it
may affect the eyes, causing pain and blurred vision. The blisters often combine, resulting in a
large eroded or broken area, and there may be an intense burning feeling in the affected area.
Healing takes place over several weeks and leaves discoloured areas on the skin. The following
measures may be helpful for shingles:
 applying calamine lotion twice daily to relieve pain and itching and promote healing
 keeping the sores dry and not letting clothes rub on them if possible
 wearing clean, loose-fitting, cotton clothing
 relieving pain with aspirin or Paracetamol; but sometimes the pain may be so severe as to
require stronger prescribed medicines, including painkillers and sedatives at night
 preventing infection by bathing the sores with warm saltwater three or four times a day, or
applying gentian violet solution once a day, or antibiotic skin creams or ointments if
available
 watching for signs of infection of the shingles sores such as redness or pus; if infection
occurs, treat as indicated for infected wounds above
The pain usually diminishes after three or four days. Unfortunately, some people develop a
persistent pain and scarring over the affected area. Rubbing creams on the scars or painful areas
may help. Medicines for pain such as aspirin or paracetamol or something stronger may also be
needed to manage chronic pain caused by shingles.
Allergic reactions
104
Allergic reactions to medicines are more common in people living with HIV AND AIDS. These
often appear suddenly and start as skin rashes, redness, and itchy skin. If people think they may
be having a reaction to a medicine, they should immediately go to see the health care worker who
prescribed it. Medicines that commonly cause reactions in people living with HIV AND AIDS
include:
 anti-tuberculosis medicines
 antiretroviral (ARVs) medicines
 antibiotics
 anti-cancer medicines
Bedsores
Bedsores are caused by the breakdown of the skin due to pressure. It is very important to prevent
infections resulting from sores of any type that do not heal adequately, and bedsores are included
in this category. These chronic open sores appear in people who are so ill that they cannot roll
over in bed, especially those who are very thin and weak. The sores form over bony parts of the
body where the skin is pressed against the bedding. They are most often seen on the buttocks,
back, hips, elbows, and feet. To prevent bed sores in people who are ill you should advise them
to:
 Get out of bed as much as possible.
 Change position when lying down every two hours, from one side onto the back and
from the back onto the other side, and so on, in order to prevent prolonged lack of
circulation to any one area of the body. This is particularly important if an area of skin is
already affected. The person may need help with this in the home if they are very weak.
 Use soft bed sheets and padding, which should be hung on a daily basis to be aired out;
hang each time the bedding is soiled with urine, stools, vomit, or sweat, and straighten the
bedding often as lying on wrinkled bedding can hurt the skin.
 Put cushions under the body in such a way that the bony parts rub less.
 Eat as well as possible; extra vitamins may help
A bedridden child who has a severe chronic illness should be held often on someone’s lap.
Possible causes of skin problems
Skin problems in people living with HIV and AIDS are common and unfortunately tend to be
chronic. They can be controlled with the right treatment, but rarely cured. The most common
causes of the illnesses outlined above include
 HIV (weakened immune system results in less healthy, strong skin)
 shingles (herpes zoster)
 scabies
 yeast infections (thrush, candidiasis)
 other fungal infections (ringworm)
 bacterial infections
 malnutrition and dehydration
 poor hygiene
 allergic reactions to medicines or skin irritants
 bed sores (caused by lying in one position in bed)
 eczema
When to seek medical treatment for skin problems:

if pus, redness, or fever (indicating infection) accompany the skin problem
105





if the wound has a bad smell, if brown or gray liquid oozes out, or if the skin around it
turns black and forms air bubbles or blisters; this might be gangrene, a very dangerous
condition, and medical help must be sought very quickly
if there is severe pain from a skin problem, like shingles, and the person is unable to sleep
or function during the day
if shingles affects the eyes
if there is an allergic skin reaction to a medicine
if the person is wounded or develops an open sore and they are not fully immunized
against tetanus
Caring for mouth problems
Symptoms:
1. soreness in the mouth, usually accompanied by white patches on the tongue and surrounding
redness
2. blisters and sores on the lips
3. cracks and sores on the mouth
4. problems with the teeth such as inflammation of the gums, tooth abscesses, and infection
What to do in the home
Poor nutrition can cause problems in the mouth and can make existing problems worse.
Encourage people to eat a healthy diet or take vitamin supplements. To help prevent problems in
the mouth and throat, the mouth can be rinsed with warm salt water (half a teaspoonful of salt in a
cupful of clean water), or with a mouthwash solution after eating and between meals. The wash
should be swished gently in the mouth then spat out (not swallowed or it may upset the stomach
and cause nausea).
General tips for dealing with a sore mouth:
 Eat soft foods rather than hard or crunchy foods.
 Eat bland rather than spicy foods.
 Use a straw for liquids and soups. This may help when taking in the food needed while
preventing it from touching the sore areas.
 Cold foods, drinks, or ice, if available, may help numb the mouth and relieve discomfort.
You should advise someone with thrush to:
 Gently scrub the tongue and gums with a soft toothbrush at least three or four times per
day, then rinse the mouth with diluted mouthwash, or salt water or lemon water rinse
 Suck a lemon if it is not too painful; the acid of the lemon slows the growth of the fungus
 Apply gentian violet solution three or four times a day; gentian violet solution is prepared
by dissolving one teaspoonful of gentian violet crystals in a half a litre of clean water;
again, warn about the purple colouring staining linens and clothing
 If necessary, you might use a prescribed anti-fungal oral suspension or lozenge; in some
people, thrush affects not only the mouth but the entire oesophagus, causing pain when
swallowing and a burning sensation in the chest
You should advise someone with herpes simplex sores to:
 Apply the gentian violet solution described above; although the strong purple colour may
bother some people, the solution can help in preventing the sores from becoming infected
106
To avoid or treat dental problems, encourage people living with HIV and AIDS to make regular
visits to a dentist when possible and to be particularly careful about oral hygiene. They should be
sure to brush the teeth and clean between the teeth (using dental floss or toothpicks) to remove
food particles. If someone does not have a toothbrush, they can use a tooth-cleaning stick made
out of the twig of a tree, or they can tie a piece of towel around the end of a stick to make a
toothbrush. If toothpaste is not available, mixing salt and bicarbonate of soda (or ashes) in equal
amounts can make a tooth-cleaning powder. To make it stick, the brush should be wetted before
being put in the powder. This mixture works just as well as commercially available toothpaste for
cleaning teeth.
Possible causes of mouth and throat problems
Soreness in the mouth, usually accompanied by white patches on the tongue, is a common
symptom in people living with HIV and AIDS. Sometimes it progresses into the throat and
oesophagus, causing painful swallowing, thereby interfering with eating and drinking. Other
associated problems are blisters and sores on the lips, and dental problems. The following
diseases may cause a sore mouth or throat:
 thrush (yeast infection), resulting in white patches and surrounding redness, not only in
the mouth but possibly in the throat and oesophagus; if the white patches scrape off with a
brush or a fingernail, it is probably thrush; If it does not, it may be another condition called
hairy leukoplakia
 oral herpes simplex (blisters and sores on the lips)
 malnutrition (cracks and sores on the mouth)
 Kaposi’s sarcoma of the mouth or throat
 dental problems.
Note: Hairy leukoplakia may look like thrush. However, it does not cause pain, it will not scrub off
the tongue or gums, and it commonly makes vertical ridges on the edges of the tongue. It is
mentioned here only so that you know that it can be confused with thrush. There is no need for a
specific treatment for this condition. It will not interfere with the ability to eat or with a person’s
general comfort. The main point is to not use too many medicines for thrush if in fact the problem
is hairy leukoplakia.
When to seek medical treatment for mouth and throat problems:
 If the person who is ill becomes dehydrated or is unable to swallow properly or take their
medicines (very urgent in the case they are unable to take TB medicines or ARVs).
 If there are symptoms of oesophageal thrush such as a burning pain in the chest or a
deep pain on swallowing.
Session 2.4.2 Danger signs and making referrals
Time: 30 min
Participants will be able to:
 Describe danger signs for all key symptoms and what to do
when these are seen
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Trainer Instructions:
Handout 2.4.2
Notes for the facilitator:
Each time the CHBC team visits a client they will need to immediately determine if there is an
emergency situation that would require urgent referral to the hospital. The team will need to follow
procedures under Session 5.3, Taking a basic history and making a physical assessment, to
check vital signs and take other steps to determine if a danger sign is present and referral is
urgent. The CHBC team will also need to be aware of what medicines the client is taking the
medicine (TB, ART, Cotrimoxazole or any other medicine) because they may have severe a
reaction to a medicine and need to be referred urgently to the hospital.
Danger signs
Recognizing danger signs: Knowing when to refer
When you visit your client you will need to determine if there is an emergency condition, which
would require you to arrange a referral to the hospital. Check for danger signs and refer to the
hospital if the client
General:
 has a high fever that does not reduce with fever care (>102F)
 has a fast pulse (100 beats/min or more)
 is breathing very rapidly (>30 breaths per minute while at rest)
 is very dehydrated (sunken eyes, skin test)
 cannot eat or drink
 is in shock (weak, fast pulse, cold skin)
 is in a lot of pain (unable to control with medication)
 is very weak and pale; looks anaemic
 has other signs that you determine as serious, which need immediate medical attention
Head/neck:
 has very powerful headache that won’t go away
 has a very stiff neck
 is convulsing (now or recently)
 is unconscious
Skin/eyes:
 has a wound that is very infected (oozing pus, oozing a black coloured fluid, redness
around or red line from the wound)
 yellow eyes and/or yellow skin - jaundice
 has difficulty seeing
 has a blister on the nose or near the eyes
Mouth/throat
 cannot swallow
 has a lump (swollen lymph node on one or both sides of neck with or without puss)
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
has pain in mouth, throat, and burning sensation in chest
Respiratory:
 cannot breathe very well
 has fast and shallow breathing
 is gasping for breath
 is turning blue
 is coughing without stop
 has been coughing for two weeks
 is coughing-up blood
Gastrointestinal tract:
 has strong pain in the abdomen
 has severe vomiting and is not able to eat, drink
 has blood in the urine or the stool
If the client is near death, referring them to the hospital may not always be very beneficial for
them or their family. Discuss with the client and family about what they want to do. If they want to
go to the hospital, help them with the referral. If they want to stay at home, provide the family and
PLHIV with care through the end of life. Give information to the caregiver about how to make the
client as comfortable as possible. If the client is in pain, provide the client and caregiver with
enough pain medicine for around the clock relief and teach the client and caregiver how to take
the medicines on time.
For a client taking medicines such as TB treatment, ART, or Cotrimoxazole, refer if the following
occur:
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rash with or without fever (rash may have blisters, peeling on eye, mouth, genital area,
other parts of the body)
has shooting pain or numbness in their arms and legs
has become very depressed, suicidal thoughts, having very bad dreams, not thinking
clearly, memory loss
if they are not taking their ARV medicines correctly (same time/every day); educate and
help them improve immediately; refer for medical follow-up
Severe vomiting.
if their condition has not improved, or has gotten worse even though they are taking ARV
medicines.
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Session 2.5.1 Emotional and spiritual support for PLHIV and their
caregivers
Time: 1 h
Participants will be able to:
 Describe common emotional issues faced by PLHIV and
caregivers
 Describe ways in which emotional support can be provided to
clients and families/loved ones
 Explain importance of spiritual support for PLHIV
 Describe the signs of burnout in themselves and others
Trainer Instructions:
Presentation 2.5.1 eventually as refresher to Module 1,
otherwise only Handout 2.5.1 and Activity
Methodology:



Brainstorming
Short presentation
Role-play
Materials Needed:


Flipchart paper
Coloured markers
Handout 2.5.1:

Empathy: Good Caregiver, Good Counsellor
Activities:
1. Tell a story about the emotional experiences of someone who recently learned about their
HIV status from the VCT clinic.
2. Ask participants to brainstorm about some of the difficult emotions people may experience
from the point of diagnosis on.
3. Present the emotional grief cycle from HIV diagnosis to self-acceptance. Emphasize that
CHBC clients will need emotional support throughout the course of disease but that people
generally go through changes in emotional wellbeing over time.
4. Group work. Facilitators should allow 30 minutes in total: 10 minutes to explain activity; five
minutes for pair activity; and 15 minutes for debriefing /discussion.
 Ask trainees to form pairs for an activity.
 Instruct them to nominate one person to be the ‘counsellor’ and the other to be the
‘client.’
110
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Ask all the counsellors to meet together in one area of the training room for their
instructions. Provide them with the instructions for counsellors, as below. Ask them
NOT to share this with their partners (i.e. the client. These instructions can be printed
and distributed).
Ask all the clients to meet together in one area of the training room for their
instructions. Provide them with their ‘client’ instructions found below (these instructions
can be printed and distributed).
Instructions for counsellors:
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

Your job in this activity is to be a ‘bad counsellor.’
Ask your client to tell you about an achievement in their lives; a time they did
something they were proud of and happy about.
As your client begins to answer, demonstrate poor counselling skills, e.g. look at your
watch, write notes, play with your hair, look around the room, look for something in
your bag, fix your make-up, play with your jewellery, talk to someone else across the
room, interrupt and tell your own story, make inappropriate facial expressions, sit with
a closed posture, look disinterested, do not encourage the conversation, do not ask
questions, etc. Remember that you need to be as bad as possible.
DO NOT tell your client you have been asked to be bad – this must be kept
confidential. The purpose of the activity will be explained afterwards and the clients
will be told that you were asked to be ‘bad.’
Instructions for clients:



Your job in this activity is to be a ‘client.’
You need to think of an achievement in your life; a time you did something you were
proud of and happy about. It should be something you are comfortable with and able
to discuss for five minutes.
The ‘counsellors’ will be practicing their basic skills during this activity.
Ask everyone to find his or her partner and begin the activity. Allow the activity to proceed
for three to five minutes – use your judgment as to how much time is needed as you
observe whether pairs are continuing or ceasing their conversations.
Reassemble the group after the activity and ask the ‘clients’ to share their experiences.
Explain that the ‘counsellors’ were asked to be ‘bad’ and that the purpose of the activity
was to quickly highlight the importance of the basic skills of communication.
5. Emphasize that emotional support is based on good communication skills (verbal – clear
language, not using jargon, etc., and non-verbal – nodding, appropriate facial expressions,
facing the client etc., and active listening – paraphrasing, summarizing).
6. Now ask for participants to brainstorm the definition of counselling. Begin the counselling
presentation by defining counselling, self-awareness of counsellors and discussing the core
micro-skills of a good counsellor. Use power point for presenting or already prepared flipchart
paper.
7. After the presentation say that a good counsellor consists of both being a self-aware person
and someone with the key micro skills to counsel. Tell participants that unlike in other
111
professions, when we are counselling our only tool is ourselves. Tell participants that they will
now do an individual activity where they will draw themselves and write the key things about
themselves that they bring to counselling which will help or hinder them as a good counsellor
(this can include their personality, qualities, life experiences and faith.) After participants are
done ask them how it felt to draw themselves and try to identify their qualities related to
counselling. Tell participants that they can keep these drawings for themselves and don’t
need to keep them.
8. Practice counselling micro-skills using case studies. Place participants in groups of three
(rotating roles as counsellor, client and observer. Note: observers will use counselling
observation forms). Each counsellor will have 7 minutes to practice and 3 minutes for
feedback. Give the participants a scenario to use for the counselling session and write it on
flipchart paper (or on a Powerpoint slide) so all can see it while they practice. After everyone
has had a chance to practice, review participant counselling practice experiences. Tell
participants that they will have further chances to practice these skills during role-plays
throughout the training and the practicum.
9. Summarize main learning points.
Notes for the Facilitator:
Special Issues to be aware of when counselling PLHIV
a. Depression and anxiety
Learning that you have HIV can make a person feel very worried and scared. Sometimes it brings
up problems in the family, marriage, friends, church and workplace. They may be sick and not be
able to work or contribute as they did before. This will add to their worries. If they have children
they will worry about them. It can be a very difficult time when they feel uncertain and unhappy.
Anxiety and depression are reactions to major kinds of events that happen in a person’s life.
Anxiety is a feeling of being nervous, worried, fearful and dread. Depression is a feeling of
sadness and hopelessness, a feeling that things are bad and it is going to get worse.
Some of the symptoms of anxiety are:
 lack of appetite
 feeling short or breath
 shaking, sweating, feeling weak
 the heard feeling like its pounding
 tingling in hands
 difficulty sleeping
 a feeling of being out of control
 feeling that something very bad is going to happen
 difficulty concentrating
 feeling grumpy or irritable
 feeling very worried
Some of the symptoms of depression include:
 a feeling of hopelessness and helplessness
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feeling tired and having no energy
not being happy even when good things are happening
irritability
sleeping too much
eating too much or not at all
not wanting to do activities or join in with others
talking about feeling useless or hurting themselves
using alcohol or drugs to make themselves feel better
What to do to prevent or overcome feelings of anxiety and/or depressions for the person living
with HIV:
 Encourage involvement with friends.
 Meet other people living with HIV.
 Discourage use of drugs and alcohol as they will make the situation worse.
 Only use medicine given at the clinic.
 Get plenty of rest and relax.
CHBC Teams and family members should:
 spend time with the person
 listen to the person who is sick
 let the person know that their feelings are normal
 let the person know you care by your words and actions
 involve the person in family activities
 get support from the church or other groups
 not take a person’s anger or distress personally
 help them to plan for their partner and children’s future if that is on their mind (see
memory books or boxes)
What can HIV caregivers do to provide emotional support to PLHIV and families/loved
ones?
The most important fundamental support HIV caregivers can provide is
 listening with an open heart
 showing acceptance of your client and what they tell you
 providing love and encouragement
 empathy: Trying to understand their situation by putting ourselves in their shoes so we
can better understand their situation
 visit the client often when they are in need of emotional support
 keeping client information confidential
 link them to a PLHIV support group
 refer them for professional counselling services if needed/wanted
 meditation, breathing, recreation, exercise
 link them with spiritual guidance if wanted
b. Confusion and dementia
Some causes of mental health problems are from HIV disease itself. It can be caused by a
number of diseases/problems including the brain being infected with HIV. Sometimes family
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members will notice someone is “slow” or dull in their thinking or responses. This may worsen as
the disease progresses.
The main changes include:
 The ability to think clearly – maybe in concentrating, losing track of conversations or the
task they set out to do or not making sense when speaking.
 Behaviour – they may become irritable, uninterested or unpredictable
 Strength and coordination – dropping things or falling over or slowness in movement HIV
is the most common cause for confusion in people with HIV. Other causes could be sideeffects from medicine, other infections, depression or head injury. What to do.”
It can be frightening for the person with HIV and family members. The best medicine for
confusion is ART, this can significantly help to reduce the problem. Other helpful things for family
members to know are
 maintain the same daily routine
 limit noise and confusion; promote a calm and quiet environment
 help the person stand or walk as needed
 Try not to leave the person unattended
 keep medicines out of the way if the person may take them incorrectly
 get help from others if needed
Signs of caregiver burnout and importance of caring for caregivers:
a. Signs of burnout:
 irritability, anger
 bad dreams or poor sleep
 poor concentration or difficulty in remembering things
 withdrawal from others – avoidance of patients and problems
 fatigue
 emotional numbing – lack of pleasure, lack of joy
 using alcohol and drugs
 in survivors of multiple loss – afraid to grieve
 trouble with eating
 trouble with sex
 guilt, self-blame
b. Prevent and respond:
 Be confident that you have the skills and resources to care for the patient and family.
 Define for yourself what is meaningful and valued in care-giving.
 Discuss problems with someone else.
 Be aware of what causes stress and avoid it.
 Use strategies that focus on problems, rather than emotions.
 Change approach to care giving:
- Divide tasks into manageable parts (small acts of care).
- Learn how to adjust the pace of care giving.
- Asks others to help.
- Encourage self - care by the patient.
 Use relaxation techniques (meditation):
- Find a quiet place where you can lie down without being disturbed.
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-
Lie down on your back (soft music can be played in the background).
Imagine that you are in a beautiful garden. The sun is shining and there is a soft
scent of flowers. Feel your body floating gently as the floor takes the weight.
Breathe in deeply and breathe out slowly.
Open your eyes and come slowly to a sitting position.
You will need to practice this exercise several times until you have learned to relax all the parts of
your body and your mind.
 Take care of your life outside of care-giving (other interests, support, family, and
friends).
 Develop your own psycho-social support network (such as caregiver support groups).
 Take care of your own health.
 Develop respite care solutions or substitutes; care- givers need a break.
 Take time off on a regular basis.
 Be aware that you can’t do everything and need help.
 Include in your week a time to discuss patients together.
 Share problems with your colleagues.
 Organize social activities.
Spirituality and religion
Disease, illness and disability affect all people, irrespective of their religious or spiritual
persuasions. Most people when they are ill and possibly facing death attempt to seek meaning in
their lives and an opportunity to leave behind something of lasting value. Praying is common in all
religion and culture, and it gives hopes to everyone especially to the sick and the caregivers.
It is important to stress to learners that each person has his / her own spiritual and cultural beliefs
and practices that are part of their heritage.
Commonly used definition of spirituality:
Spirituality is recognized as a factor that contributes to health in many persons. The concept of
spirituality is found in all cultures and societies. It is expressed in an individual’s search for
ultimate meaning through participation in religion and/or belief in God, family, naturalism,
rationalism, humanism, and the arts. All of these factors can influence how patients and health
care professionals perceive health and illness and how they interact with one another!
Commonly used definition of religion:
Religions are organized expressions of shared human belief about the existence of a force or
supernatural entity which gives meaning to life. Religion can include the belief in a deity (or
deities), the theology of the religion, the concept of an afterlife, and the rituals and practices of the
religion used to express those beliefs. Many religions have a rich tradition and experience in
giving meaning to the cause of suffering and in restructuring suffering into a positive experience.
What is spiritual care?
The aims of offering spiritual care services to PLHIV and their families are
 to strengthen the spiritual, physical, emotional and social wellbeing of the PLHIV
 to enable the PLHIV to face life with confidence and the assurance that their God,
however perceived, completely loves and accepts them
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to facilitate the opportunity for the PLHIV to receive necessary sacraments
to remind the PLHIV of the mortality of our bodies, that is, everyone will one day be
subject to death
to reconcile with the past, present and future
to enable the family to cope, to fulfil the obligation to the PLHIV, and to come to terms with
their own loss
to help the community avoid condemnation of the infected and affected, and hence be
challenged to help when needs arise
With appropriate spiritual support, the PLHIV may:
 feel that their life is and has been meaningful
 accept forgiveness by others
 forgive others
 reassure that God accepts them
Issues in giving spiritual support
Spiritual caregivers should not impose their faith on the PLHIV. They should also consider the
following points:
 PLHIV religious affiliation
 the age group, gender, marital status and culture of the PLHIV
 preparation of the family and the PLHIV before the support is given
 the need for sensitizing the community on the importance of spiritual support to help them
take the initiative to visit the PLHIV individually or in groups; once the support group or
individual has visited, to explore possibilities of targeting the individual for spiritual followup
HIV care providers can keep the following things in mind when providing spiritual support
to clients and loved ones:
 The most important factors when communicating with PLHIV and their families are
showing love and respect. Touching and listening to them and being consistently present
is also meaningful.
 Assess client’s spiritual needs and then actively link clients to the spiritual support they
request.
 Respect the PLHIV and family’s spiritual and religious beliefs even if they are different to
your own. While providing spiritual care, spiritual leaders should avoid introducing their
own values and faith I and instead enhance the PLHIV’s spiritual growth. This plays a
great part in encouraging the PLHIV to have a positive view of life and to help them
forgive others and themselves. If you share religious beliefs with your client, praying
together may be appropriate.
 As some clients may not belong to a specific religion, they may prefer to talk about the
meaning of their life, rather than directly about spirituality or religion. Allow your client
ample opportunity to share their life concerns with you, and help them to reaffirm the value
and meaning of their life.
 Organize opportunities for PLHIV and families to visit temples, receive blessings, and to
listen to prayers of priests from relevant religions (Islam, Hinduism, Christianity,
Buddhism, etc) which might bring them comfort and inspiration.
 In the case of children, if they fear that God is angry with them or they are angry with God,
helping them to focus on the good and happy things in their lives may help.
 Conduct an analysis of healing practices within the community.
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Who can offer spiritual care?
Spiritual care and support can be offered by any of the following people:
 appointed religious or spiritual leaders
 any other mature follower of the same faith of the infected and affected member who is
present at the time of need
 a spiritual leader who is the choice of the PLHIV and or the family members
In effect, anyone can listen to a person’s fears and concerns regarding spiritual matters if they
have good counselling and communication skills. The key is being respectful and nonjudgmental.
When is spiritual care necessary in HIV care?
The short answer is, whenever the client needs it. Examples of times when clients may need
spiritual care are
 when clients need hope and assurance
 when clients feel guilt, despair and need help in forgiving themselves and others
 when clients need to assign value and meaning to their lives; humans need to feel that
they have purpose and that they have contributed to others
 when clients feel isolated and faced with the possibility of death, or the death of a loved
one
 when clients are discriminated against and stigmatized because of being infected with HIV
 sometimes when all hope is gone and everything else has faded, and God remains the
only hope
 near the end-of-life to pray with the client and perform last rites
 after the individual dies, to provide them with a dignified funeral in accordance with the
client’s wishes and religion
 when bereaved family members need spiritual and emotional counselling and comforting
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Session 2.5.2 Social support needs and referral for PLHIV and their
families
Time: 1:20 h
Participants will be able to:
 Explain why it is important to mobilize community support for
PLHIV and make referral linkages with social services
 Describe how to mobilize community support and resources
 Practice mapping key people and resources in the community
 Practice organizing a community mobilization event
Trainer Instructions:
Activities and Handout 2.5.2
Methodology:
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Brainstorming
Short presentation
Small group work
Community mapping
Gallery walk
Materials needed:
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Flipchart paper
Coloured markers
Drawing of the Continuum of Care on flipchart paper
Handout 2.5.2:

Community Mobilization Action Plan
Preparation:

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Invite a guest speaker for this session. Here are some ideas of who could be invited: 1) If
there is someone whose done community mapping before, invite them to come and
provide a talk on how they mapped resources in the community and what they did with the
map to help their program; and/or 2) invite a community leader to describe what support
they need from HIV caregivers in order to mobilize better support in the community.
Draw the continuum of care model on flipchart paper and have it ready for the session.
Activities:
1. Begin the session by reviewing the learning objective for the session.
2. Ask participants think back to Session 2.1.3 and the discussion on PLHIV and human needs.
Tell participants that thus far the training has explored assessing and addressing the physical
and emotional needs of clients and families. Ask participants which human needs are left that
still need to be reviewed in the training. Agree that they are social and spiritual needs. Explain
that this session will focus on assessing and addressing the social support needs of clients
and mobilizing community support to help address them.
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3. Ask participants to brainstorm all the possible social needs that PLHIV and families might
have. Divide the needs by social interaction needs and social support/service needs. Write
down ideas on flipchart paper. Now, ask the HIV caregivers which social support needs they
think they can help the client and family address on their own and which they’ll need help
with. Summarize by saying that as wonderful and as capable as HIV caregivers are, they
can’t do everything by themselves. This is normal for all services everywhere in the world. We
need partnerships and referral networks to address the whole needs of clients. This is the
purpose of the Continuum of Care discussed in the beginning of the training.
4. Next ask participants what would happen if HIV care workers did their work alone and did not
try to build support and encouragement for the work from the community. Write their ideas on
flipchart paper. Summarize that without support from village leaders, religious leaders, people
from local government offices, etc it is impossible to build more sustainable support for HIV
programs in the community. Without support it makes it difficult to reduce stigma and
discrimination and create an environment of support and compassion for PLHIV and families,
and those who may want to seek HIV counselling and testing.
5. Now ask participants to consider the Session 2.2 review of the job of a HIV caregiver. Say
that one of the major jobs of the HIV caregiver in addition to providing care to PLHIV and their
families is to 1) mobilize good will and support for their work; 2) educating the local
community about HIV, STIs and TB and helping members go for testing and care as needed;
3) informing people about the impact of stigma and discrimination and working to reduce its
impact as problems arise for clients and 4) mobilizing local resources whether it be food
donations, help with rebuilding a client’s home, help with supporting children to go to school,
help with paying for funerals. These resources can come collectively from community
members or from local NGOs or government office. The result of this work should include a
referral network.
6. Explain that in order to be able to mobilize resources we need to map them first and then
meet with key supporters in the community to garner their support and make a place of
action. If there is a guest speaker, ask them to describe how they did this in their community.
If there is not guest speaker, use a real example of a community where support was
mobilized. Describe the steps in detail so participants have enough information to do the
small group work.
7. Next introduce small group exercise. If there are several participants who come from the
same areas, group them by location so they focus on developing a real community map and
mobilization action plan. If the participants are from all over the place then give them the case
study to work from. Give each group 25 minutes. After each group is done ask them to post
on the wall their maps and their action plans.
8. Tell participants that they will do a ‘gallery walk’. Ask everyone to look at each groups work.
Facilitate a discussion on innovative or interesting ways the groups’ mapped resources and
prepared community mobilization action plans.
9. Summarize and close.
Notes for the facilitator:
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1. PLHIV & family needs:
Over the course of their lives PLHIV will identify many needs. Some may be easy for them to
address themselves, some can be addressed directly by the CHBC team or other services
specializing in HIV care readily available in the community. Some are very difficult to mobilize
without the help of many people in the community. These can include
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sending children to school
access to economic strengthening opportunities
access to adequate supply of food
protection for property seizure or evictions
medical services not accessible because of stigma
gender-based violence
Because of a lack of resources, the CHBC may be stressed and feel overwhelmed by all the
needs of their clients which are difficult to address. To reduce this burden and better support
PLHIV it is essential that HIV caregivers become aware of the resources available in community,
and country as a whole, and try to link clients with available resources.
2. Identifying resources and mobilizing support:
1. The first step is to meet with community leaders (village leader, religious leaders, and local
government leaders) and tell them about the work you and your team plan to do. Build
their support by sharing stories about the suffering of PLHIV and their families and the HIV
prevention power of normalizing HIV in the community. If the CHBC team has in its wontok
community leaders, then they should also ensure they share with them the plans for CHBC
and garner their support.
2. Once the community leaders are supportive, with their help, map the resources in the
community. A community map is a drawing of all the resources that would be helpful for
PLHIV and families. A map can be drawn any way the CHBC team wants to draw it, the
key is that there are codes which represent different kinds of services and that the map
somewhat represent the actual geographic location so it is understandable to people who
look at it. When selecting codes for services, it is important to think very holistically about
client needs. These are the types of resources that are important to map: health care
services, traditional healers, churches, local well or water sources, public and private
schools, markets, social welfare office, location of different NGOs, etc.
3. After the mapping is done, identify those resources or services that need to know about
CHBC and be linked to the service. Also identify who needs to be sensitized about HIV in
the community. Based on this, develop an action plan which address the 4 key areas of
community mobilization:
o 1) Gaining support for CHBC work. This includes continuing to meet with key
people who can support CHBC.
o 2) Educating the local community about HIV, STIs and TB and helping members go
for testing and care as needed; informing people about the impact of stigma and
discrimination and working to reduce its impact as problems arise for clients and
o 3) Helping PLHIV and family members to establish support groups. This is a very
important way of supporting PLHIV and families to help each other and build
supportive networks and possibly income generating activities.
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o
4) Identifying and mobilizing local resources whether it be food donations, help with
rebuilding a client’s home, help with supporting children to go to school, help with
paying for funerals. This includes identifying national rules, regulations and laws
related to needed social support services provided by country. E.g. social welfare,
free schooling for the poor, school lunches for poor children, legal rights for women,
community development funds, etc
a. Community Mobilization Action Plan
All HIV caregivers need to prepare a community mobilization action plan. This plan will guide their
work in activities aimed at achieving the above 4 main objectives. An action plan can be written in
different ways but all action plans need to include answers to the following 6 items:
1) Action to be taken?
2) How will it be done?
3) By whom?
4) When?
5) Cost?
6) What is the expected outcome?
Example Action Plan
Activity
How & Where
When
Conduct advocacy
to reduce stigma
and discrimination in
the school
* Organize meetings
with school leaders to
discuss the impact of
stigma and
discrimination on the
children of PLHIV
* Provide training on
HIV transmission and
prevention to school
staff/teachers
Dec 1
Who’s
responsible?
Cost
Desired
outcome
Another tool which is important to develop is a list of all the services identified through mapping
and meetings which are available to help PLHIV and families. A simple list of services could look
like:
b. Social support issues/services list
Example of referral list of Social Support Organizations in Port Moresby and their area of focus
which CHBC can bring to their Community:
SN
Name
Services
Provided
Address,
Telephone
number and
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Service
Hours
Cost of
Services
Free or Not
Contact Person
Heduru
Clinic
Friends
Foundation
HIV palliative Dr. xx
care
and Tel: xxxxx
treatment
PMGH
Counselling,
Ms. XX
CHBC, social Tel: xxxxx
work
PMGH
Urban
Palliative
clinics/health care/rx for OIs
centres
PPTCT
STI Treatment
Condom
Distribution
HIV Testing
8.00-4.06 pm
Free
Free
Heduru Clinic
*Except for
specialty
care
9am-4pm
Free
Friends
Foundation
8.00-4.06 pm
Free
Urban
clinics/health
centres
c. Need for social support
PLHIV, like everyone else, need company and association without stigma or discrimination; they
have the right to belong to clubs and other groups and participate in community activities such as
feasts and festivals, attending church, or participating in social gatherings. Other needs of PLHIV
include:
HIV caregivers can play a very important role in helping PLHIV in their area to join an existing
group, or develop a support group if there is not one already established. They can also help
PLHIV and families members to integrate other groups in the community such as local church
groups.
d. Example Pakistan: Association of People Living with HIV and AIDS
The “Association of People Living with HIV & AIDS in Pakistan“ was launched on World AIDS
Day 2006 with the support of UNAIDS-Pakistan and its UN co-sponsors, as well as the Pakistan
government.
The main objective of the Association is to give the people living with HIV and AIDS a platform to
raise a common voice for their rights and to contribute to the National response by spreading
awareness. In addition to that the Association also endorses the national goal:
“Prevent HIV from becoming established in vulnerable populations and spreading to the general
population while reducing HIV related stigma and discrimination”.
The Association of People Living with HIV & AIDS is the organization representing PEOPLE
LIVING WITH HIV & AIDS in Pakistan. Through leadership in advocacy, policy education and
prevention, the Association of PLHIV strives to minimize the adverse personal and social effects
of stigma and discrimination towards Positive people. By championing the participation of HIVPositive people at all level of the national HIV and AIDS response aims to build positive future for
positive people and to stop further spread of this epidemic.
In keeping with the principle of greater involvement of people living with HIV (GIPA), all the
executive board members of the Association are HIV positive. The Association advocates
empowering people infected & affected by HIV and AIDS by campaigning vigorously so that the
general population and fellow citizens respect their fundamental human rights, all of which in turn
reduces and negates stigma and discrimination. Any HIV Positive person can get a membership
of this Association just by filling the membership registration form, which is available on the
website:www.theassociation.org.pk.
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Module 3: Special considerations with antiretroviral
medication
Objective: To understand treatment and adherence issues in the context
of care and support
Total Time for module: 7 hours
Methods:
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
Presentations
Case studies
Discussions
Contents:
Session 3.1: Background on HIV
Session 3.2 ARVs
Session 3.3 Adherence
Session 3.4 Opportunistic Infections
Session 3.5 Paediatric AIDS
Case studies
45 min
2h
1h
1h
45 min
1:30 h
Note:
You can use case studies when ever you feel it is appropriate.
Remark for the facilitator: Some issues might be covered also in other modules (Module
2 and Module 4), however, they are worth being mentioned more then once given the
importance of the topics.
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Session 3.1 Background on HIV and AIDS – lifecycle of the virus,
stages
Time: 45 min
Participants will be able to:
 Understand and explains HIV and WHO staging
Trainer Instructions:
Presentation 3.1
Notes for the facilitator:
Historical Background
HIV was first recognized in 1981and came to attention when clusters of death from PCP and
Kaposi Sarcoma was reported in young patients. It originated from Simian immunodeficiency
virus (SUVs). HIV once established in humans developed human habits.
It is caused by immune deficiency virus which is of two types:
 HIV-1
 HIV-2
HIV-2 has the same genetic organization as HIV-1but there are significant differences in the
envelope glycoprotein. Similar diseases are associated with both HIV-1 and HIV-2 but most West
Africans remain asymptomatic. Progression from HIV to AIDS is faster in HIV-1 as compared to
HIV-2, either it is less pathogenic or it has a long period of latency. Moreover HIV-2 infected
children have far better survival rates.
Structure of the HIV virus
HIV Virus has a unique structure with the presence of envelop proteins and core proteins.
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gp 120 & gp 41 are envelop proteins and have the major role to recognize CD 4 cells thus
promoting viral attachment. Core proteins contain the enzyme “Reverse Transcriptase” ----- the
unique enzyme that enables the viral multiplication in the host cell.
HIV Lifecycle
The Human Immunodeficiency Virus is a type of retrovirus, which are single stranded RNA
viruses which can infect a number of different cells, including CD4 bearing macrophages and Thelper lymphocytes within the host. There are several steps in the viral replication cycle which
may be taken advantage of in developing antiretroviral therapies.
There is a struggle between HIV replication & the immune response of the patient. Viral burden
directly & indirectly mediates CD- 4 T cell destruction (mature & progenitors).
Continuous viral replication leading to immunodeficiency is the hallmark of the disease.
Stages
Binding and penetration
HIV infection begins with the interaction of the HIV glycoprotein (gape) 120 with the CD4
molecule on the surface of the target cell. Following CD4 binding, a centre material change in the
HIV gp 120/gp 41 complex takes place. This change in confirmation exposes gp 41 allowing it to
initiate fusion of the membranes. As the virus fuses with the cell, internalization of the viral core
with the associated RNA occurs.
Uncoating & formation of double stranded DNA
Partial uncoating of the viral core occurs to expose the viral RNA. Once in the cell cytoplasm, the
conversion of the viral RNA into double-stranded DNA commences as the viral reverse
transcriptase becomes active.
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Integration
The viral DNA migrates to and enters the host cell nucleus and becomes integrated into the cell
DNA with the help of the enzyme integrase. The provirus can then remain latent or be active,
generating products for the generation of new virions.
Assembly, budding, maturation and release
Among the strands of messenger RNA produced by the cell are complete copies of HIV genetic
material. These gather together with newly made HIV proteins and enzymes to form new viral
particles, which are then released from the cell. The enzyme protease plays a vital role at this
stage of the HIV life cycle by chopping up long strands of protein into smaller pieces, which are
used to construct mature viral cores.
The newly matured HIV particles are ready to infect another cell and begin the replication process
all over again. In this way the virus quickly spreads through the human body. And once a person
is infected, they can pass HIV on to others in their bodily fluids.
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HIV Life Cycle and Antiretroviral Therapy
There are several steps in the viral replication cycle which may be taken advantage of in
developing antiretroviral therapies.
Kaletr
a
Nelfin
avir
EFZ
NVP
AZT
d4t
3TC
ddI
Abaca
vir
NtRTI
Tenofovi
r
The reverse transcription stage of HIV replication provides a good target for the action of two
types of drugs: nucleoside reverse transcriptase inhibitors (nucleoside analogs) and nonnucleoside reverse transcriptase inhibitors (NNRTIs). Protease inhibitors target the maturation
and budding of HIV particles.
There are several new drugs which act on different sites of viral replication to stop the disease
progression. Emtricitabine (FTC), Delavirdine (DAPD) are the newer under trial Nucleoside
Reverse Transcriptase Inhibitors (NRTs). Capravirine (restricted use), DPC-083, TMC-120 are
Non Nucleoside Reverse Transcriptase Inhibitors (NNRTs). Indinavir (IDV), Saquinavir
(SQV),
Ritonavir(r),
Lopinavir
(LPV),Nelfinavir
(NFV),Atazanavir
(ATV),Amprenavir,
Fosamprenavir & Fortovase are Protease Inhibitors. Enfuvirtide & T-20 are Fusion Inhibitors.
SCH-C and AMD-3100 act on chemokine receptors. S-1360 is an Integrase Inhibitor.
Phases of HIV Infection
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HIV infection occurs in 3 phases:
1. Primary acute infection
2. Prolonged period without obvious Symptoms (might continue for more than 10
years.
3. AIDS characterized by opportunistic diseases leading eventually to death.
After HIV infection (without ARV) most will develop AIDS 8-10 years later, 5-10% will develop
AIDS first few years and 5-10% will not progress to AIDS for 15 or more years.
Primary Infection
In Primary infection HIV RNA levels are usually >1 million copies/ml. This period is also described
as “Acute Retroviral Syndrome”. It is symptomatic in 70-80%of the patients, and occurs 2-4
weeks after exposure(peak b/w4-8 wks). Patients may present with fever, erythmatous skin rash,
fatigue, pharyngitis with cervical lymphadenitis, myalgias, arthralgias, headache with retro-orbital
pain, mucosal ulceration, aseptic meningitis, or polyneuropathy.
Primary infection is diagnosed by detecting HIV by PCR or p-24 antigen.
Period of Clinical Latency
This period follows acute retroviral syndrome. It is usually an asymptomatic period and may last
for 8-10 years. CD-4 counts are > 500 in such patients.
Development of AIDS
AIDS may take up to ten years to develop. As the disease progresses the clinical status of the
patient deteriorates. It is the result of immunological & virological failure. Viral load increases
gradually at this stage with the CD-4 Counts gradually dropping. There is frequent occurrence of
infections, weight loss, diarrhoeal illness and opportunistic infections.
WHO Clinical Staging of HIV Disease
WHO has defined different stages to assess the severity of the disease clinically. In resource
limited countries where CD-4 counts & viral load by PCR are not available, this clinical staging is
of great help.
CLINICAL STAGE I:
Patients are asymptomatic in this stage and usually present with persistent generalized
lymphadenopathy but with an adequate functional status.
CLINICAL STAGE II:
In this stage patients present with weight loss of less than 10% of body weight, minor
mucocutaneous manifestations (Seborrhoeic dermatitis, prurigo, fungal nail infections, recurrent
oral ulceration, angular cheilitis), Herpes Zoster within last 5 years, Recurrent upper respiratory
tract infections. The patient is symptomatic but still has an adequate functional status.
CLINICAL STAGE III:
This stage is characterized by weight loss > 10% of body weight, unexplained chronic diarrhoea
of more than 1 month, unexplained prolonged fever (intermittent or constant) more than 1 month,
oral candidiasis(thrush), oral hairy leukoplakia, pulmonary TB,
Severe bacterial infections (pneumonia, pyomyositis), with bed ridden status of < 50% of the day.
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CLINICAL STAGE IV:
This stage is characterized by candidiasis of oesophagus, trachea, bronchi, atypical
mycobacteriosis, disseminated or pulmonary, non-typhoidal salmonella septicaemia, extra
pulmonary tuberculosis, lymphoma, Kaposi sarcoma, HIV encephalopathy and /or a bed ridden
status of > 50% of the day.
Session 3.2 Antiretroviral Therapy
Time: 2 h
Participants will be able to:
 Understand and explain main ARVs, their effects, side effects
and contraindications
Trainer Instructions:
Presentation 3.2
Notes for the facilitator:
Highly active antiretroviral therapy or HAART is a combination of three or more drugs selected
usually from more than one group. These drugs act at various phases of viral replication. This
combination helps in achieving an undetectable viral load on treatment. This is a great change
compared to earlier days when single or two drugs were used to suppress the viral load where it
usually led to earlier drug resistance.
Having HIV does not mean starting antiretroviral medications (ARVs) immediately. ARVs are
never an emergency. It is beneficial, when used/given appropriately. There are many side effects
and toxicities associated with these drugs. Drug resistance is always an issue. Their continuous
and lifelong use requires commitment.
Initiation of ART
Initiation of ART is based on:
 Clinical criteria
 Laboratory parameters
Clinical criteria:
Clinical stage 3 and 4 are indications for starting ART.
Laboratory criteria:
CD4 count less than 350 is the cut off value for initiation of ART. If CD-4 count is not available
then an absolute lymphocyte count of less than 1200 (corresponding to 200 CD4 count) can be
considered for initiation of treatment if clinical state favours.
The patient should be mentally ready and committed to initiate and comply with the
treatment. Repeated counselling sessions are required to motivate the patient.
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Role of CD4:
CD4 is a marker for immune status. A count of <200 indicates a severe immunosuppressed state.
The relation between CD-4 count and the immune status of a person is as follows:




>500
350-500
200-350
<200
Strong immune system
Mild immunosuppression
Moderate immunosuppression
Severe immunosuppression
CD4 testing is not always available. There are many logistical issues including issues of quality
assurance. CD4 testing is very important, but if unavailable and the client is clearly symptomatic
(stage 3 or 4), waiting for the test should not delay ART initiation. It is to be done at baseline and
then again every 9-12 months to monitor the strengthening of the immune system.
Role of HIV viral load
The viral load tells about the amount of HIV in the blood. It is a sensitive “gold standard test” for
patients on ART as it most accurately tells if ART is working or not, and is a marker for
adherence. It has no role in pre-ART monitoring of HIV.
Goals of ARV therapy
ARV helps in restoration and maintenance of the immune system of the body, promotes normal
growth and development. The incidence of opportunistic infections and cancers reduces
significantly. Viral load reduces to a negligible level.
Failure of ARV Therapy
Failure of ARV therapy appears in the form of immunological failure, virological and clinical
failure: one cannot achieve an undetectable viral load and there is a rebound of viral load on
repeated measurements > .5 log (.7 log, <2 y/o). CD4 count decreases by 30% absolute or
approximately 10% on two measurements. Clinical failure appears in the form of new onset of
opportunistic infections or cancers.
Causes of ARV Treatment Failure
Main reason for failure of ART is non-adherence. Studies have shown that 28-40% of
treatment failure and regimen discontinuation is due to suboptimal adherence and/or
toxicity of the regimen, suboptimal potency and durability of the ARV regimen.
ARV treatment failure can occur because of multiple factors like drug pharmacokinetics, drug
resistance, drug toxicities, neurological side effects, drug induced anaemia, dyslipidemia,
gastrointestinal problems, deranged LFTs and existence of co-infections like HBV, HCV, TB.
Drug resistance, drug- drug interactions or cross-resistance with other drugs are very important
factors for ARV failure.
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Session 3.3 Adherence
Time: 1 h
Participants will be able to:
 Understand and explain the importance of adherence, the
issues related to it and ways to increase it
Trainer Instructions:
Presentation 3.3
Notes for the facilitator:
One of the biggest challenges the family and health care professionals face is adherence. For
HIV-infected patients treated with antiretroviral therapy (ART), adherence to ART is a significant
determinant of survival. Adherence rates approaching 100% (>95%) are needed for optimal viral
suppression, yet the average adherence rate to ART in the United States is approximately 70%.
Patients with suboptimal adherence are at risk not only for HIV progression, but also for the
development of drug resistance. In the West, only 50% of individuals taking ART achieve
maximum benefit due to non-adherence. Studies indicate that health care providers' assessments
of their patients' adherence often are inaccurate and limited, so individualized assessment and
planning for adherence are essential for patients to be successful with ART. There is evidence
that adherence in Africa is much higher; however adherence is likely to wane the longer people
are on treatment and their health improves. Non-adherence to medication is a problem in every
chronic illness among populations.
With the readiness assessment complete, and the child and family willing to commit to ART, the
patient can be started on treatment.
Goals
1. Identify barriers of adherence
2. Identify and discuss the critical topics of adherence
3. Be introduced to materials used to help assess adherence
HIV-specific challenges
HIV treatment is life-long. There are complex treatment regimens (Dosage/ pill burden, timing,
frequency, nutritional requirements).Resistance to medications can develop and limited number
of HIV medications available.
Vital partners in adherence
Following partners play crucial role in Adherence programs:
1. Patient
2. Health care team
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3.
4.
5.
6.
7.
Nurse, doctor, social worker, counsellor, pharmacist, other professionals
Family
Friends
Hospital / Clinic
Government
Barriers to adherence
Adherence to ART is a big challenge especially for children. Start the ARV regimen only when the
patient is ready. Starting it too early may result in poor adherence, failure of the regimen, and
increased risk of ARV resistance. Co-morbid conditions that interfere with adherence, such as
mental health issues or depression, must be treated initially. It is important to consider the
patient's preferences in selecting the drug regimen. The regimen must fit into the patient's daily
routine, and the patient must believe in the potential success of ART. Simplifying the ARV
regimen to the extent possible with once-daily regimens and the lowest number of pills, while
maintaining efficacy and minimizing adverse effects, is important for maximizing adherence and
avoiding pill fatigue. Starting ART is rarely an emergency, so taking time to identify the patient's
wishes for care, make a thorough readiness assessment, select the ARV regimen, and plan for
adherence support is important in maximizing the likelihood of treatment success.
Common reasons for non-adherence include the following: experiencing adverse effects, finding
the regimen too complex, having difficulty with the dosing schedule (not fitting into the daily
routine), forgetting to take the medications, being too busy with other things, oversleeping and
missing a dose, being away from home, not understanding the importance of adherence, and
being embarrassed to take medications in front of family, friends, or co-workers. Other factors
include inability to obtain refills, insufficient food and water in the home, lack of appropriate
storage for medicines, lack of transportation for follow-up, lack of a personal support system and
lack of skills needed to take medicines.
It is important to look for these and other potential barriers to adherence for proper management.
Assessment for adherence before starting ART
Assess adherence at each visit using questions. Ask these questions in a non-judgemental way
and listen carefully to the patient to invite honesty about issues that may affect adherence.
Following key questions should be kept in mind:
1. Does the pt/family know his/her HIV status?
2. Does the patient/ family understand why he or she will be taking medications?
3. Does the patient/family want to start ART?
4. Taking age into account
5. Does the patient/family have a support system?
6. What are the living conditions of the patient/family?
7. Does the patient/family have ability to obtain refills/return to the clinic?
8. What is your attitude toward antiretroviral therapy?
9. Do you believe that antiretroviral therapy is effective?
10. What do you hope these medications will do for you?
11. Are you ready to take the medication every day, around the same time each day?
12. Are you committed and motivated to take the medication every day for the rest of your
life?
13. Who knows about your HIV status?
14. What other medications are you taking: prescription, over-the-counter, herbals?
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15. What is your daily routine, including waking and bed times?
16. How many meals and snacks do you eat per day, and at what times?
17. Do you use alcohol, marijuana, cocaine, or injectable drugs? If so, how much do you use
and how long have you used them?
Most of these factors are modifiable. Before starting ART, appropriate interventions should be
made, and sources of adherence support should be identified to help patients overcome potential
barriers to adherence.
Assessment for adherence for patients already on ART
For patients taking ART, it is important to assess adherence at every clinic visit. Adverse effects
are a common cause of suboptimal adherence to ART. Continue to ask whether the patient has
adverse effects from the ARV medications and assess his or her ability to accept and tolerate
these. Work closely with the patient to treat adverse effects, and consider changes in ART if
adverse effects are not tolerated. Continue to offer support to improve or maintain optimal
adherence.
Following key questions should be asked:
1.
2.
3.
4.
Do you manage your own medications? If not, who manages them for you?
What HIV medications do you take and what is their dosage? When do you take these?
How do you remember to take your medications?
How many doses of your HIV medication have you missed in the last 72 hours, last week,
last 2 weeks, and last month?
5. On a scale of 1 to 10, where would you say you are? A score of 1 indicates that you do
not take your medicines right at all; for example, not every day or not at the same time
every day; 10 indicates that you take your medications perfectly every day, at the same
time every day. (Visual analog scales are also used to assess adherence; see Appendix
1.)
6. If not a 10, what causes you not to be a 10?
7. When are you most likely to miss doses?
8. Do you have any adverse effects to from your HIV medications? If so, what are they?
9. Are you comfortable taking medications in front of others?
10. What is most difficult about taking your medications?
11. How do you like working with your pharmacy?
Assessing readiness for antiretroviral therapy
This is the most important factor if one has to achieve the complete treatment response.
Assess patients' willingness to accept and tolerate common adverse effects of ART. Patients may
identify some adverse effects that they wish to avoid completely and others that they are willing to
accept and manage; this may help in tailoring the selection of ARV medications to the individual
patient.
Psychosocial Assessment
The purpose of doing a psychosocial assessment is to evaluate the psychological, social, and
emotional needs of the child and family.
Need assessment of the patients
Before starting ART expert counselling should be done. Family support and educational level of
the patient & the family should be assessed.
There should be good coordination &
communication among care providers. Facilities should be available for referral of the patients to
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community agencies. Follow-up and maintenance of treatment plan is very very important
Factors Influencing the Psychosocial Assessment
The psychosocial assessment is influenced by the patient’s relationship to:




Health care provider
Caregivers
Disease
Belief system
Levels of functioning
Four levels of patient functioning must be considered:
Physical: Adherence largely depends on the physical status of the patient. In the case the patient
is not fit enough it becomes the responsibility of care providers & the community.
Cognitive: Patient should be able to understand each aspect of the illness & its consequences in
case of non-adherence.
Emotional: Self-awareness and self perceptions about the illness are very important factors for
adherence.
Behavioural: Patient’s attitude towards the illness also counts a lot, whether he is committed
and motivated to take the treatment or not. What is his insight to the disease? Is he hopeful
towards life? Proper counselling can bring a behavioural change in a patient’s life.
Factors affecting patients’ care
Many factors influence patient’s care.
1. Cultural Factors
2. Spiritual Factors
3. Lifestyle Factors
Cultural Factors:
There are many cultural beliefs about HIV / ART in different areas of the world. Patterns of child
rearing & patterns of caring for the ill are also different. Gender also matters a lot for people in
many countries.
Spiritual Factors:
Beliefs about death, illness traditional healers / spiritual leaders also play crucial part in affecting
patient’s care.
Lifestyle Factors:
Lifestyle factors that affect a child’s care include living situation, safety, social support network &
parenting styles.
Adherence checklist for healthcare providers
Maintaining excellent adherence is the most important factor for successful ART. Patients tend to
overestimate their potential to adhere to their own medication. Health professionals should rely on
multiple sources and have an extended evaluation sheet to track and record adherence.
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1. Identify someone who will help to ensure that patients take their medication and are able
to bring them to the clinic/hospital if necessary.
2. Ensure that caregiver(s) have expressed interest and willingness to participate in care.
3. Create a medication schedule that takes into account the family's and child's obligations
and routines.
Checklist for families and children
1. Provide education about HIV, adherence and resources/support services available to the
patient and caregiver(s).
2. Establish reminder systems to improve adherence if possible.
3. Ensure that the family knows how to contact the health care team with problems or
questions.
Education
What are the implications of starting ART?
Before starting art patient should be clearly informed that treatment for HIV is life long, there is no
cure & many adverse side effects are associated with treatment.
How will good adherence affect the patient?
Health care provider or the counsellor should discuss the positive effects of excellent adherence
on patients’ health.
What problems arise when a patient is non-adherent?
Counselling
Counselling offers assistance with disclosure if necessary. It helps the patient / family to
incorporate medications into daily routine. It also provides positive feedback for excellent
adherence. It should be made certain that the patient understands the regimen. Individual plans
should be set for a regimen on daily basis. Identify daily activities that can serve as reminders.
One should discuss recently missed doses with the patient and form a team/ support network to
provide proper care.
Routine adherence assessment
Adherence can be assessed by following measures:
1. Question patient (family) about size, shape, name, taste of medications
2. Question the patient (family) about how often they take the medications
3. Patients (family) should always bring their medications with them to each visit
4. Measure/weigh liquids
5. Pill counts
6. Immunological/virological markers
7. Serum levels
Determine adherence at each visit by:
 Asking the patient/family to name or describe the specific medications (colour, #, size, or
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






amount given if suspension)
Give “permission” for patient to say if doses are missed.
If any doses have been missed, determine the reason
Ask the patient / family to update you about major life changes
Include the child in discussions about adherence
Teach the child that taking ART is a part of daily life
Do not use coercion or bribery
Use motivational tools as appropriate
Facilitating adherence
Proper assessment, counselling, psychosocial support and education are key factors for
assistance in problem-solving. Interventions for successful adherence are an ongoing effort, not
one-time events. Studies have suggested that adherence rates decline when patient-focused
interventions are discontinued. Therefore, positive reinforcement at each clinic visit or contact is
extremely important. Reinforce what the patient has done well and assist the patient in identifying
and problem-solving areas for improvement. Whenever possible, share positive information about
the patient's health, such as improvements in quality of life, CD4 cell count, and viral load, to
encourage a high level of adherence.
Adherence strategies at initiation of ART
Before prescribing ARVs, some clinicians have their patients do adherence trials using placebo
tablets or jelly beans to measure the patients' readiness to start therapy and their ability to adhere
to a regimen. This trial allows patients to experience what a regimen will entail in real life, how
therapy will affect their daily lifestyle, and what changes will be needed to accommodate the
regimen. The shortcoming of placebo trials is that patients are not challenged with adverse
effects as they might be with a true regimen.
If a patient has TB and needs TB treatment first, DOTS can be used to help the client “practice”
adhering.
Strategies to improve adherence to antiretroviral medications









Establish readiness to start therapy
Provide education on medication dosing
Review potential adverse effects
Anticipate and treat adverse effects
Utilize educational aids including pictures, pillboxes, and calendars
Engage family, friends
Simplify regimens, dosing, and food requirements
Utilize team approach with nurses, pharmacists, and peer counsellors
Provide accessible, trusting health care team
Patients who can identify their medications and describe the proper dosing and administration
have higher adherence rates. Providing patient education before writing a prescription helps
ensure adherence to ARV medications. Education can be provided in oral, written, or graphic
form to assist the patient's understanding of the medications and dosing. Basic information,
including number of pills, dosages, frequency of administration, dietary restrictions, possible
adverse effects, tips for managing adverse effects, and duration of therapy will help patients to
understand their ARV regimens. Patients should understand that the success of ART depends
upon taking the medications every day. Adherence levels of >95% are important in preventing
virological failure.
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Close follow-up by telephone, clinic visits, or other contact with the patient during the first few
days of therapy is useful in identifying adverse effects, assessing the patient's understanding of
the regimen, and addressing any concerns before they become significant adherence barriers.
Individualized interventions should be designed to optimize outcomes for each patient.
Pharmacists, peer counsellors, support groups, adherence counsellors, behavioural interventions,
and community-based case managers are useful in supporting adherence for the HIV-infected
patient. Multidisciplinary teams that include nurses, case managers, nutritionists, and
pharmacists, in which each care provider focuses on adherence at each contact with the patient,
are extremely effective in supporting adherence.
Many physical devices can be used to support adherence. The following are simple, inexpensive,
and easy to incorporate into the routine of the HIV patient:
 Medication organizers include pillboxes and medisets. These are available in several
shapes and sizes to fit the needs of the individual patient. They can be filled weekly so
that the patient can easily determine whether a dose of medication was missed.
 Reminder devices include alarm watches, beepers, or cell phone alarms. They are
effective in reminding the patient when to take medications. Medication diaries may be
used for the patient to record doses that were taken.
 Visual medication schedules: are calendars with pictures of the patient's medications
on them to remind the patient to take the doses.
Adherence counselling
Adherence counselling must be:
 Continuous: every visit
 Personalized: tailored to the needs and situation of each child/family
 Universal: reinforced by all health professional staff
 Repetitive
Adherence strategies by age:
Infants
One should focus on education and support efforts on adult caregivers of infants and help
families create realistic medication schedule.
Toddlers and Preschoolers
Emotional and physical support should be ensured. One should try to have at least 2 people
knowledgeable about the child’s medication and they should be available to give medication to
the child.
School-age children
Once the child is able to understand, s/he should be taught about how to select/measure
medication. Provide help to the children to discover foods that make medication more palatable.
They should also be involved in calendar reward programs.
Older Children and Adolescents
Caregivers control over child’s treatment should be subtle (one to one, not a public issue).
Individual counselling must be offered. One should identify friends/peer support groups/older
children willing to help.
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Talking About Adherence with children
The child should be taken into confidence and should have discussions about adherence.
Teach the child that taking medications is a part of daily life. Use motivational tools as
appropriate. Patients tend to overestimate their adherence to their own medication. Health
professional should rely on multiple sources/have an extended evaluation sheet to track and
record adherence.
Difficult adherence situations for young people


Changes in Routine:
Sleep overs, holiday/vacation, weekend and extended family visits are the main
problems.
Relevant Research on Adherence:
Social support from friends and classmates appears to facilitate youngsters’ disease
adaptation. A child’s peers influence health promoting and risk taking behaviours.
Patients seen often (every 1-2 weeks) have more favourable outcomes compared with patients
seen less often. Frequent contact with health care professionals enhances the involvement of the
child and family in treatment and provides additional opportunities for education.
Systems and linkages
Doctors, nurses, pharmacy staff & counsellors (if available) should be involved in adherence
programs. It is also important that where and when will adherence counselling be done and what
other organizations can support patients and staff in promoting good adherence.
Critical topics to the adherence discussion
Following important points should be given due importance:
1. Are you ready as a physician to tell this family they need to take medications for the rest
of their life?
2. Are you part of the problem?
3. Assessing Readiness
4. Disclosure
5. Shifting responsibility: caregiver to child
6. Assessing adherence in the absence of virological tests
Empowering PLHIV
NGOs are playing a very crucial role in empowering PLHIV. Most critical to empowering PLHIV is
ensuring trust between the health provider. What PLHIV can do to empower themselves:
 Try and understand HIV disease ----- concept about disease stages
 Develop knowledge about prophylaxis / drugs used
 Seek medical advice when they feel sick
 Attend clinic as scheduled
 Find a doctor or nurse they feel comfortable with, and see the same doctor each visit
 Note down all issues to be discussed with the HCW
 Know the names of their ARVS / and the side effects.
 Monitor their own weight
 Keep a record of nutritional aspects
 Ask about the laboratory and radiological results
 Educate themselves about OIs and common problems like TB, Candidiasis, Herpes
Zoster, diarrhoeal diseases
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

Educate themselves about CD4 levels and viral load
Educate themselves about safe sex and contraception.
Treatment and care centres
The following services are being provided at treatment and care centres (list of centres can be
found in Annex 2):





Counselling
Routine clinical consultations
Diagnostics, CD 4 levels and viral load tests
Management of opportunistic infections
ARVs
Session 3.4 Opportunistic Infections
Time: 1 h
Participants will be able to:
 Understand and explain main OIs and ways to treat them
Trainer Instructions:
Presentation 3.4
Remark for the facilitator: Opportunistic Infection have already been covered in Module 2
but given the importance, a revision might be well placed after the section on ART.
Notes for the facilitator:
Why opportunistic infections?
HIV hosts are individuals having more than one defect in their natural defence mechanisms so
there is an increased risk of infections and once infected have a severe disease. Thus identifying
and treating OIs and then using prophylaxis gives quality and stable clinical state. With ARVs the
prophylaxis can be stopped when adequate immunological recovery occurs.
What is the association between CD4 cells and opportunistic infections?
CD4 cells and Immune Status
CD4 cells fight infections in the human body. Normal CD4 count is greater than 1000 cells/mm.
Let’s revise:
CD4 Number
>500
350-500
Immune suppression
Strong immune
system
Mild
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200-350
<200
Moderate
Severe
CD4 cells and opportunistic infections
CD4 cell count tells about the degree of immunodeficiency. The higher the CD-4 count, the better
the immune status. If the CD-4 count is less than 50 the chances of MAC, Histoplasmosis, CMV
retinitis & CNS Lymphoma are high.
Common OIs











Tuberculosis (pulmonary and extra pulmonary)
Pneumocystis carinii pneumonia (PCP)
Atypical Mycobacterium species (MAC)
Recurrent bacterial respiratory tract infections
Herpes Zoster
Herpes simplex (genital or HSV encephalitis)
Toxoplasmosis (CNS)
Cryptococcal meningitis
Leishmaniasis
Candidiasis (oral, oesophageal, GI)
CMV retinitis
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



Kaposi Sarcoma
Non-Hodgkins lymphoma
Progressive Multifocal leukoencephalopathy
Chronic diarrhoea (Cryptosporidia, isosporiasis, microsporidiosis)
Hepatitis-B co-infection
Hepatitis B has similar transmission routes as HIV. 10% of HIV positive patients are co-infected
with HBV. This co-infection can alter ARV drug choices like Lamivudine (3TC) & Tenofivir (TDF).
There is an increased risk of hepatotoxicity. Immunosuppression can reactivate HBV. It has
many other issues like longer acute infection, less clearance of HBeAg & higher rates of
cirrhosis and liver-related morbidity.
Hepatitis-C co-infection
HCV prevalence is rapidly increasing in Pakistan (10%-60%). HCV infection leads to cirrhosis
and hepatocellular cancer. Treatment for HCV is now available through the Prime Minister’s
Program at selected centres . HCV+ patients should be assessed for HCV treatment by a
specialist i.e. LFTs, viral PCR, liver biopsy. Chronic HCV progress to cirrhosis in 20 years (220%).Rapid progression occurs in old age, alcoholics & HIV infection. HIV/HCV co infection
progression to cirrhosis is higher by three fold. Acceleration is magnified with low CD-4 counts.
Hepatotoxicities with ARVs occur with increased frequency.
HCV affects the rate of HIV progression
HCV and HIV patients should be advised to avoid alcohol. Precautions for prevention of
transmission of both viruses should be taken. Vaccination against HAV & HBV should be done for
each patient. HIV positive patients should be evaluated for HCV therapy. HCV is to be treated
on the basis of viral load & suggestive liver biopsy. Treatment is with Interferon plus Ribavirin for
48 weeks. If CD-4 count is >200 Patients with HIV co infection should be treated on standard
lines. ARV therapy should be the first treatment if CD-4 <200. During co-treatment avoid
hepatotoxic ARVs.
HIV and TB co-infection
HIV has caused a resurgence of TB resulting in increased morbidity & mortality world wide. There
is 10 fold increased risk of developing TB among HIV patients. TB can occur at any CD4 count &
can stay latent for many years. There is an increased rate of recurrence. TB is endemic in
Pakistan and should always be considered in HIV positive people.
TB burden in Pakistan
No data is available at the National level. A study conducted at PIMS shows 27.5% co infection
with TB out of 233 HIV positive patients.
HIV and TB: double trouble
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SUSCEPTIBILITY
PRESENTATION
TB
HIV
DISEASE PROGRESSION
MORTALITY
Pathogenesis
HIV compromises immune system so HIV positive people are 60% more likely to develop active
TB. Pro-inflammatory cytokines by TB granuloma increase HIV viraemia thus accelerating
immune suppression. Each disease speeds up the progress of the other & together are more
destructive.
TB can be the first manifestation of AIDS. Clinical presentation depends on degree of immunosuppression. There is a higher proportion of extra pulmonary disease with co-infected patients.
Risk of MDR TB is higher among HIV infected patients.
Diagnosis of TB in HIV positive patients
A high index of suspicion is required for a diagnosis of TB among HIV patients. A higher
proportion of sputum smear negative pulmonary disease (22- 64%) occurs in such patients.
Atypical Chest X-Ray findings (may be negative) may be further confusing. In advanced HIV
disease Tuberculin anergy appears. An accurate diagnosis needs and experienced physician in
both HIV and TB management with adequate training. Patient needs to get adjusted to the
diagnosis and treatment of TB in HIV.
There are many problems associated with HIV-TB co-infection like:
 Drug Interactions
 Issue of adherence
 Side effects and drug complications
 Problems of Immune Reconstitution
 Rifampicin Interactions for NNRTIs & PIs
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CD4 CELLS
Pulmonary
tuberculosis
500
400
Lymphatic, serous
tuberculosis
300
Tuberculous
meningitis
Disseminated
tuberculosis
200
100
0
Duration of HIV infection
Clinical Presentation:
Fever, cough, cavitary lesions may be absent.
Tb can manifest (present) itself also outside the lungs and is then called extra pulmonary Tb.
Depending on its location it will be lymph nodes, military, meningitis or skeletal Tb..
Diagnosis:
 Sputum (smear negative common)
 Chest x-ray, lymph node biopsy/FNA
 Clinical assessment
 History of Exposure
Treatment:
INH 300mg + RIF 600mg + PZA 2gm + ETB 15-25mg/kg + pyridoxine 50mg x 6 months. National
Guidelines & DOTS program should be followed.
Managing TB and ART
Treatment of TB in HIV positive patients should follow the same principles as in non-HIV cases. It
can prolong and improve the quality of life for HIV positive patients. Treatment is difficult due to
pharmacological interactions, such as inhibition or induction of cytochrome P-450 enzymes.
Paradoxical worsening of TB manifestations following HAART can occur. Duration of treatment:
9-12 months (2HREZ / 7HR). Rifampicin is contra-indicated with nevirapine / PI containing
HAART regimens.
Initiation of ART for patients with TB: to start or delay?
Reasons to start ART
Anti tuberculosis therapy decrease morbidity and mortality related to HIV and AIDS. There is
improved quality of life with TB getting controlled.
Reasons to delay ART
There are many reasons to delay anti TB therapy, however treatment of TB deserves priority.
1. Overlapping side effects from ART and anti-TB therapy
2. Complex drug-drug interactions
143
3. Immune reconstitution inflammatory syndrome
4. Paradoxical reactions.
5. Difficulties with adherence to multiple medications
6. Pill burden
7. Possible options for ART in patients with active TB:
8. Defer ART until TB treatment is completed
9. Defer ART until the ‘continuation phase' of treatment for TB, and use HE as continuation.
10. Treat TB with RIF containing regimen and use Efavirenz + 2 NRTIs
It is important to know the various interactions between Tb medication and ARVs:
Rifampicin interactions for NNRTIs and PIs
Antimyco- NVP
bacterials
EFV
IDV
Rifampin Decreased 40% Decreased 20% Decreased
Recommendation: Recommendation: 89%Recommendations:
Do
not
co- Consider EFV 800 Do not co-administer
administer
mg daily
Rifampicin Interactions for NNRTIs & PIs
Antimycobacterials
LPV AUC
NFV
SQV
Rifampin
Decreased 75%
Decreased
Decreased
84%
Recommendation: 82%
when given without
Do not co-administer Recommendation: RTV
Do not co-administer Recommendation:
If using SQV/RTV
can use rifampin 600
mg/day or 2-3 times
weekly
144
Tuberculosis and ART
Status
When to Start ARV Therapy
CD4 less than 200/mm3
Start TB Therapy
Start ARV as soon as TB therapy
can be tolerated
CD4 between 200 and 350/mm3
Start TB therapy
Start ARV therapy after 2 months of
TB therapy with EFV
CD4 greater than 350/mm3
Treat TB, start ARV therapy
according to general indications
Patients on ARV requiring ATT
Start TB therapy with assessment of
ARV regimen with changes
Status/When to Start ARV Therapy
CD4 less than 200/mm3
Start TB Therapy
Start ARV as soon as TB therapy can be tolerated
CD4 between 200 and 350/mm3
Start TB therapy
Start ARV therapy after 2 months of TB therapy with EFV
CD4 greater than 350/mm3
Treat TB, start ARV therapy according to general indications
Patients on ARV requiring ATT
Start TB therapy with assessment of ARV regimen with changes.
ART and pregnancy
Antiretroviral Treatment reduces viral replication and viral load, treats maternal infection and
protects the HIV-exposed infant. It Improves overall health of mother but requires ongoing care
and monitoring
How successful are prevention to parent transmission (PPTCT) programmes?
NOT 100%. They are around 15% to 25% in developed countries and 25% to 45% in developing
countries. The difference in outcomes is largely due to infant feeding practices.
What are the components of a PPTCT programme?
Four Pronged Approach:
1. Primary HIV prevention in parents
2. Prevention of unwanted pregnancies
145
3. Biomedical interventions for Prevention of Parent to Child Transmission (PPTCT)
i. During antenatal period
ii. During labour
iii. During post-natal period
4. Post delivery programs for care and support.
One should offer effective prophylactic antiretrovirals to reduce intrauterine, intra partum (during
delivery) and postpartum transmission (after the delivery).
Non-antiretroviral interventions for PPTCT include interventions to reduce transmission through
breast milk.
Session 3.5 Paediatric AIDS
Time: 45 min
Participants will be able to:
 Understand and explain issues related to diagnosis, treatment
and care and support of children
Trainer Instructions:
Presentation 3.5
Notes for the facilitator:
Mother to child transmission is by far the most significant route of transmission of HIV infection in
children below the age of 15 years. This transmission can occur in pregnancy, during child birth
or breast feeding. Without a PPTCT intervention, the risk of transmission from an infected mother
to the child ranges from 15% to 45%. Transmission occurs more often in developing countries
and is largely attributed to breast feeding practices with new-born infants, Now with the different
strategies to decrease mother to child transmission, the transmission rate has come down to as
low as 2% in developing countries.
Immunology in infants and children
The immune system in children is not fully developed at birth. This developing immune system of
the infant may allow for a quicker viral replication and a less efficient immune response meaning
that HIV can spread easier in an infants or child’s body.
CD4 cells: infants and children
CD4 cell function is immature at the time of birth. Normally there is an increased absolute
numbers and percentage of CD4 cells at birth which gradually decrease over time (to reach adult
values by ~6yrs of age) .Use of CD4% is more useful when following infants and children
(<13yrs) because of normal variation in absolute numbers.
Children and HIV RNA
146
Infants’ viral load at birth tends to be much higher than adults at the time of infection. Infected
infants usually have peak viral loads at 2 months of age (usually >=100,000) and remain at these
levels throughout first year, then decline slowly over the next few years.
Viral load has not been shown to be a significant predictor of disease progression in infants <12
months. At any given HIV RNA level (viral load), infants <12 months have a higher risk of
progression than older children at the same RNA levels CD4 counts vary with age in children.
Percentages (%) of CD4 cells are more meaningful in children.
HIV exposed
Children born to positive mothers persist with maternal HIV antibodies as long as 18 months.
DNA PCR can rule out infection at 6-8 weeks of age. Reconfirmation should be done at 6 months
of age or 2 months after cessation of breast feeding.
HIV infected
HIV antibody can be confirmed after 18 months or if two DNA PCR tests are positive. The child
becomes clinically symptomatic.
A presumptive diagnosis of severe HIV disease in children under 18 months can be made, even
in the absence of lab, if:
the infant is symptomatic with 2 or more of the following diseases:




Oral candidiasis/thrush
Severe pneumonia (requiring oxygen)
Severe wasting/malnutrition
Severe sepsis (requiring IV therapy)
Evidence can confirm the diagnosis.
Other supporting factors include:
Early diagnosis is very critical because without any intervention 33% of HIV + children will
die by 1 year of age, 50% by age 2 & 85% by age 10.
HIV Disease Progression in Children
The paediatric immune system is immature and therefore allows for faster clinical progression of
HIV infection compared to adults.
Clinical diagnosis of HIV in children
Infected children often present with more severe disease. Common signs in infants and children
are:
 Failure to thrive
 Hepatosplenomegaly
 Oral candidiasis
 Chronic diarrhoea or chronic fever
Early signs and symptoms
These can be non-specific, similar to many other viral infections which include: lethargy, malaise,
sore throat, muscle soreness, sweating, fever, growth failure or weight loss, repeated bacterial
infections, enlarged lymph nodes, developmental delay, chronic diarrhoea, oral thrush, enlarged
liver and/or spleen.
147
Later signs and symptoms
As the HIV disease progresses, patients are more likely to get opportunistic infections and
malignancies which corresponds to worsening CD4 count indicating a deterioration or decline in
the health of the immune system. WHO classifies patients using clinical criteria. These stages are
by and large similar to those used in adults. There are four clinical stages from I-IV, with signs
and symptoms showing progressive immune suppression
Laboratory diagnosis of HIV
It is done by either detecting the antibodies against HIV by Elisa or picking up the HIV virus using
PCR. The PCR is done one month after birth to have the best sensitivity .
Mother’s
< 18 months of age
IgG Ab
MOTHER
BABY
(HIVExposed)
Mother’s Antibody + Virus
Mother’s Antibody
bbbb++++++++=
+
- Truly Negative (no virus present)
- ELISA, Rapid Test Positive
- Truly Positive (virus present)
- ELISA, Rapid Test Positive
Maternal antibodies can be present up to 18 months of age. So the Elisa or a rapid test can be
performed till this age to detect the antibodies .A PCR DNA to detect HIV virus is required to truly
rule out the infection. The antibodies persisting more than 18 months of age indicates the
presence of HIV infection in the child.
Why perform antibody tests in infants less than 18 months of age?
Because these results can tell us which infants are EXPOSED to HIV and may be infected.
ALL exposed babies should be started on Cotrimoxazole (TMP-SMX) at 6 weeks of age until
infection has been excluded. So antibody testing in children less than 18 months is important for
treatment decisions.
After 18 months of age, a follow up antibody test (e.g. ELISA) should be done to confirm a
child’s negative status. ARV’s and prophylaxis can be stopped at this time.
148
Diagnosis in infants <18 months: Virological testing:
One can diagnose HIV infection in virtually all infected infants by 6 months (DNA or RNA PCR) if
mother is not breastfeeding. One negative PCR very likely excludes infection. The results must
be confirmed with an antibody test after 12 and/or 18 months of age (sero reversion +/-). One
positive DNA PCR is adequate for positive diagnosis (at 6 weeks post-weaning). The test is very
accurate, especially in high prevalence setting. If result does not match clinical picture (positive or
negative), it can be confirmed with second DNA PCR.
If infant meets criteria for presumptive diagnosis of clinical stage 3/4, do not wait for DNA PCR
results to initiate treatment. Repeat rapid test for infants with initial negative rapid test will catch
positive infants when mother was infected peri-natally. Two (2) ELISA tests or 2 rapid tests
should be performed. Sensitivity of such serial testing is >99%. The mother and child’s history
must be taken into account.
> 18 months of age
Mother’s
What happens at 18 months of
age?
IgG Ab
•
MOTHER
•
BABY
HIV-Exposed
Maternal Antibody
disappears
May occur as early as 79 months
Baby’s Antibody +
Virus
No Antibodies
Truly Negative (no virus)
ELISA, Rapid Test Negative
Truly Positive (virus
present)
ELISA, Rapid Test Positive
Diagnosis of HIV in children > 18 months of age:



Two (2) ELISA tests or 2 rapid tests should be performed
Sensitivity of such serial testing is >99%
The mother and child’s history must be taken into account
Eligibility for ARVs
ARV Eligibility Criteria (infants < 18mo):
149




HIV Antibody positive (exposed infant)
WHO Stage III or IV (moderate or severe symptoms)
OR
CD4 < 25% (< or = 11 months)
CD4 < 20% (12-18 months)
ARV Eligibility: >18 months
 Antibody positive
AND
 WHO Stage III or IV
OR
 WHO Stage I or II with CD4 < 20% (18-35 months), < 15% (36+ months)
WHO immunologic staging for paediatric HIV infection
Classification of HIV-Associated Immunodeficiency
Classification of
< 11
HIV-Associated
Months
Immunodeficiency (%)
12-35
Months
(%)
36-59
Months
(%)
≥ 5 Years
(cells/mm3)
Not significant
> 35
> 30
> 25
> 500
Mild
30-35
25-30
20-25
350-499
Advanced
25-30
20-25
15-20
200-349
Severe
<25
<20
<15
<200 or <15%
Immunological staging in children is helpful to know the severity of immune deficiency
and thus the decision about starting ARVs.
WHO immunologic guidelines for ART initiation
< or = 11
months
12-35
months
36-59
months
> or = 5
years
CD4 %
< 25%
< 20%
< 15%
< 15%
CD4 abs.
count
< 1500
< 750
< 350
< 200
CD4 % or the CD4 counts are clearly defined for different age groups as guidelines for starting
150
ARVs.
Implications for ART Initiation: Infants and Children
WHO Clinical
Stage
≤ 11 months
≥ 12 months
4
Treat All
Treat All
3
Treat All
Treat All; CD4-guided in
those with TB, LIP, oral
hairy leukoplakia,
thrombocytopenia
2
CD4-guided
CD4-guided
1
CD4-guided
CD4-guided
Conclusions
The clinical status of a child is the most important indicator of HIV. The clinical status helps to
classify the extent of disease progression and provides guidelines for therapy
Laboratory diagnosis of infants < 18mo can be very difficult in a resource limited setting.
The CD4 count is a useful immunological guide to determine the need for ART. DNA
PCR is useful in the <18mo population to diagnose HIV infection definitively. Early diagnosis of
HIV is CRITICAL in the fight against HIV. Clinical suspicion is a VITAL necessity to help with early
diagnosis.
ART in children: special considerations
All first line drugs are available as syrups. Fixed dose combinations not as yet in Pakistan.
Efavirenz avoided in less than 3 years of age. ARVs are never an emergency - even less so in
children. Adherence is the biggest problem. Children’s caregivers are the ultimate deciding
person when to start ARVs. Caregivers require strong knowledge about HIV, ARVs and
associated issues (dosing, timing, storage, stock, follow up visits, importance of lab. monitoring).
If the child is grown up and knows their HIV status and is confident, they can be encouraged to
self administer the medications. Adherence should be regularly monitored.
Disclosure to the child - refer also to Module 4 on children
Disclosure is a complex process and a challenge to both family and health care provider. The
diagnosis should only be disclosed when the child is able to cope with knowledge of HIV and no
adverse response is expected. Disclosure should be usually partial and in phases, and can be
any time after 5 years of age.
151
Case studies
Remark for the facilitator:
The case studies can be found in presentation 3.case studies.
 Case Scenario 1
Asma is a 3 year old girl with a CD4+ count of 200 (15%). Her mother is deceased and her father
provides excellent primary care for her with the help of his mother. She has been attending the
clinic for the last 2 years and has been doing well. At a recent clinic visit you noticed that she had
lost approximately 3 kilograms since her last visit. Her father stated that she has begun having
recurrent diarrhoea and fevers. She was also diagnosed with oropharyngeal candidiasis (oral
thrush). Her father who attends an adult infectious diseases clinic and is doing well on
antiretrovirals (ARVs) expressed concern for his daughter and requests she be put on ARVs.
The father has not told his mother (i.e. Asma’s grandmother) who cares for Asma during the day
while the father works of his or Asma’s HIV+ sero-status.
Comments
The child has the clinical and the immunological criteria to start ARVs. The caretaker here is the
grandmother who has no knowledge about the HIV status of her son and the granddaughter. It is
thus not ethically justified to start the ARVs in the child. This scenario reflects the problem with
disclosure. The right to disclose HIV status to nearest relative should entirely be of the clients,
however in the situation of community and partner at risk the status should be disclosed after
consultation and counselling of the client. But when the client is too small to understand or take
care of himself then the close relatives should be informed of the situation. Present legal and
ethical provisions appear absolutely inadequate to tackle the social and other problems arising
out of the HIV and AIDS epidemic. It is recommended that a legal law needs to be set in so that
the mutual interest of the patient, society and health care workers is not compromised. All in the
field of HIV and AIDS need better training on ethics and legal law.
 Case Scenario 2
Tariq is an 8 year old boy with a CD4+ count of 200 (14%) presenting with oral thrush and a
moderately severe skin rash. Tariq has been consistently coming to your clinic for the past 9
months with his grandmother and has just completed a full course of treatment for pulmonary
tuberculosis. He is the nephew of one of the senior nurses in the clinic, and she and her family
have been very eager for him to start antiretroviral therapy.
Comments
Since the child is HIV stage IV, he is eligible for ART. The child is grown up and can understand
the implications of starting ARVs. His adherence for TB drugs is an indicator for future
compliance. Family support is also very encouraging.
 Case Scenario 3
Mohammad is a 13 year old boy with a CD4+ count of 10 (<15%) presenting with a severe case
of Molluscum contagiosum (including his face) as well as a history of Kaposi sarcoma (KS). He is
an orphan and has been coming to your clinic on his own consistently at least once a month for
the last 2 years and has become well liked by the clinic staff. He has been marginally adherent in
taking prophylactic treatment and has little assistance with his general health from family or
friends since he has been ostracized by his family and community.
152
Comments
The possibility to fulfil the HIV and AIDS treatment in children depends on them, their families,
social and cultural environment. This case scenario indicates the problem with adherence to
treatment. Clinically he is in stage IV disease and definitely needs ART. The child is not being
helped by the family members or the community and he is partially adherent to the prophylactic
treatment even. He needs proper expert counselling about the disease, its consequences, need
for life long therapy and the problems associated with non adherence to ART.
 Case Scenario 4
Sarah is a 7 year old girl with a CD4+ count of 100 (10%) presenting with a moderately advanced
case of what appears to be Progressive Encephalopathy (PE). A computer tomographic (CT)
scan reveals brain tissue loss. Sarah is prone to involuntary muscle spasms and has lost the
ability to walk and sit, yet her auntie recounts how much she still enjoys life and plays as well as
she can when she is at home. Her dedicated auntie has been consistently bringing Sarah to your
clinic for the last 1.5 years and supports the girl in her care and treatment. The auntie has
become quite desperate as she has been witnessing the deterioration of her nieces condition;
she has offered you money to start her on ARVs immediately.
Comments
Patient is in advanced stage IV disease with Encephalopathy leading to irreversible loss of brain
tissue and is unlikely to benefit from any kind of treatment including ART therefore the attendant
should be properly counselled about the prognosis. Only supportive care can be offered.
 Case Scenario 5
Nashmia is a 5 year old girl with a CD4+ count of 97 (10%) presenting with what appears to be
wasting syndrome (chronic diarrhoea, weakness, and fever). The girl’s dedicated mother
consistently supports her daughter in her care and treatment; however, brings the little girl to your
clinic intermittently and has missed appointments as she often has difficulty with obtaining money
for transport. You have come to know the mother quite well, and she has confided in you that
she has turned to prostitution to supplement the finances of her family. The mother has been very
adherent with her daughter’s PCP prophylaxis
Comments
The Child’s clinical status demands treatment with ART but there are many financial & social
problems, which need attention. Moreover, the mother should be counselled to be consistent with
the follow-up and medications once the financial problem is solved. ARVs should only be started
once satisfied with the mother’s response.
 Case Scenario6
Hassan is 8 yrs old and comes to your clinic for a routine follow-up visit with his mother. Hassan
has been on ARVs for 1 year and has had a very good response to his medications. Six months
after starting therapy his viral load was undetectable and his CD4% was 30%. In his last two
visits his viral load has increased. How would you evaluate what is happening?
Comments
Clinical & Laboratory parameters can be used to evaluate this child. The main problem is with
adherence during the last six months. There should be proper counselling sessions for both the
child and the family.
153
 Case Scenario 7
Teena is a 6 year old female, diagnosed with HIV 1.5 years ago. She is cared for by her
grandmother, and lives with her 16 year old sister and 8 year old cousin. Teena has been on
ARV treatment for 1 year and is doing well medically. Grandmother said Teena has been
complaining a lot at home about having to take her medications now, and doesn’t understand why
she has to go to the doctor and get blood drawn and her cousin does not. She says it is “not fair.”
Grandmother has asked you to explain to Teena about why she comes to clinic, but does not
want you to tell her she has HIV.
Comments
The child needs ART for her illness. Disclosure of HIV infection status to children and
adolescents should take into consideration their age, psychosocial maturity, the complexity of
family dynamics, and the clinical context. The child should hear about HIV from caregiver and not
from other sources. Honesty is important in child-caregiver relationship. Keeping secrets is
difficult. Children often cope with the truth better than we anticipate. Disclosure provides child with
a sense of control over their lives. The child should know why they go to the hospital and have
blood taken regularly. It’s their right to know; it protects others from infection and gives child
permission to talk openly about HIV with caregivers. Children informed about their diagnosis have
better coping mechanisms and a higher self-esteem than children who are not disclosed to.
Disclosure to school going children is strongly recommended. There must be discussions and
plan disclosure with caregiver. There is need for up-to-date child assessment. Information should
be more specific. Moderate amount of information based on how much child can absorb. Talk
about who/what they will tell others
 Case Scenario 8
Nasir is an 11 year old male HIV+ patient. He has been followed in your clinic for the past 3
years. He has been cared for by his aunt and uncle since he was young. Nasir was disclosed to
when he first started coming to the clinic. Now, auntie says he does not take his medications
unless he is being watched by an adult. Nasir admits during the visit that he saw an
advertisement about one of his medications and saw it was for HIV. He is very quiet and
withdrawn during the visit. The auntie wants you to explain to him about HIV and to make him
“feel better.”
Comments: The child requires counselling sessions to stress on the various aspects of
disclosure, nature of disease, drug adherence, drug resistance and sex education.
Disclosure by Age: Adolescents
 Should be informed of status
 Discuss all aspects of the disease
 Basic nature of the HIV virus & disease progression
 Transmission & Prevention
 Prognosis & Diagnosis
 Self-care and self-medication
 Drug Resistance
 Living Positively & Normality
 Sexual health education
154
 Case Scenario 9
A 32 years old individual having CD-4 count of 84, not on ARVs, presents with seizure disorder
and left hemiplegia. Clinical examination shows a drowsy and febrile state.
What is the possible diagnosis?
 Meningitis (Cryptococcal / Tuberculous)
 Toxoplasmosis
 NHL
 Infarct (Hypercoagulable state)
If the CD-4 count is >200?
Comments
With this CD-4 count there are chances of Cryptococcal / Tuberculous meningitis or a
Hypercoagulable state. If the CD-4 count is > 200 then there are least chances of Toxoplasmosis
or NHL.
 Case Scenario 10
A 38 years old mother of a known haemophiliac boy who has received multiple transfusions in the
past and is found to have a positive HIV status, accidentally gets a needle stick injury while her
stay at the hospital with her son.
What would you do immediately?
How would you confirm that the attending mother has acquired the infection?
If her screening turns out to be negative, what would be your concerns?
What are the concerns if she is found to be positive subsequently?
Comments
Immediate steps for post-exposure:
 Wash exposed wound or skin with soap and water.
 For needle or sharp injury, allow to bleed for a few seconds before washing.
 Inform supervisor of type of exposure and the actions taken.
 Assure confidentiality and support and referral for treatment.
 Short-course of ARV drugs is recommended to reduce the likelihood of infection.
Ideally, initiate PEP (post exposure therapy) treatment within 2 hours of exposure, but no more
than 72 hours after exposure. If patient is not infected with HIV, discontinue PEP and retest at 6
weeks, 3 months, and 6 months. If patient is infected with HIV, counsel, support, and refer
healthcare worker for continued treatment. Currently there is no single approved PEP regimen.
Dual or triple drug therapy is recommended and believed to be more effective than a single
agent.
2-drug regimen:
1. Zidovudine 600mg
2. Lamivudine 300mg.
 Case Scenario 11
A 40 year old female, wife of a person with HIV positive Status conceives despite repeated
counselling. At initial evaluation she was found to be negative for HIV.
155
What would be your approach now?
Comments
If initial evaluation is negative, she should be retested at 6 weeks, 3 months, and 6 months to rule
out the possibility of window period.
 Case Scenario 12
A 38 year old female widow, husband died 3 years ago with symptomatic AIDS. She is
asymptomatic with three children, last child born is 9 years old & all others are healthy. She
herself has a good health & is asymptomatic.




What will be your approach?
She turns out to be positive…….
CD-4 count ----- 600
What about the children?
Comments
Her HIV screening should be done. If found positive, the result should be confirmed by ELISA. If
her CD-4 count is more than 600 she presently is not a candidate for any prophylaxis or specific
treatment. Last child is 9 years old & there are least chances that he would be positive for HIV
because after such a long period of time he is still asymptomatic.
 Case Scenario 13
20 years old female presents with features of purpura. Her husband died 2 years back and had
AIDS. She has never been tested for HIV.
How will you approach?
HIV serology turns out to be positive-----What now?
CD-4 count ----- < 200
Platelets-----------10,000
Comments
Blood CP with peripheral film and Bone marrow biopsy should be done to identify the problem. If
her CD-4 count is < 200 & platelet count is 10,000 there are chances of having HIV related
Immune Thrombocytopenia.
 Case Scenario 14
Maryam is a 13 month old female who has come to your office accompanied by her aunt. Aunt
reports that M. has had recurrent illnesses, including dermatitis and ear infections her entire life.
She has been hospitalized twice for pneumonia in the past 4 months. Maryam’s mother died
earlier this year.
What is your next step?
HIV test
Rapid or ELISA
156
Results are Positive
ARV Eligibility?
In order to find out whether Maryam should receive ARVs you need to asses her clinical stage.
What is the clinical stage?
WHO Stage III
Based on: severe recurrent presumed bacterial pneumonia
Is she eligible for ARVs?
YES!
Do you need to know her CD4 count to determine eligibility and start ARVs?
NO. Clinical stage 3, CD4 count not required.
What else will you do?
Evaluate for TB, other OI’s
Start Cotrimoxazole
Assess growth, development, immunization status, and nutrition
Begin adherence counselling
Start HAART when appropriate
When she turns 18 months of age, repeat rapid test or ELISA
157
Module 4 Special considerations with children including
MARA
Objective: To provide trainees with basic understanding of HIV testing and
treatment in children and its challenges, and to introduce special needs of children
affected by HIV and AIDS and MARAs
Total Time for module: 6 hours
Methods:



Presentations
Activities
Discussions
Content:
Session 4.1 Testing
Session 4.2 Treatment
Session 4.3 Care and Support
Session 4.4 Issues MARA
2h
1:30 h
2h
1:30 h
158
Session 4.1 Testing HIV in children
Time: 2 h
Key point
Update on testing, special considerations, settings, criteria,
procedures, disclosure and challenges
Trainer Instructions:
Activity 4.1.1, Presentation 4.1, Activity 4.1.2, Activity 4.1.3
Handout 4.1.1 and 4.1.2:


UN. (2003) Convention on the rights of the child: general comment No. 3 - HIV AND AIDS
and the rights of the child
Information on counselling and confidentiality
Notes for the facilitator:
Remark: Some repetitions from previous chapter will arise, however, certain information
is very important and therefore it is no mistake to provide the same information twice.
Activity 4.1.1: Brainstorming
This activity is designed to improve trainees’ knowledge about HIV testing in children with
particular attention to latest development, testing setting, procedures, disclosure and challenges.
The trainer will build on the information provided in Module 1. The trainer will lead the participants
through a brainstorming exercise to identify factors to consider in testing children for HIV,
procedures, disclosure and challenges. The trainer will ask participants to list possible
considerations, settings, challenges and ways to address them. The trainer will use lead
questions that are based on the additional reading materials provided in this module enabling the
trainees to recall the issues discussed when going through the reading materials.
Methodology
Group discussion
Materials

Flip charts
Duration: 30 minutes
Presentation and Discussion
This presentation will focus on theory and more technical issues around testing. Particular
attention will be paid to special considerations when testing children for HIV (rights-based
approach), settings, procedures, consent, disclosure (telling a child she/he is infected with HIV)
and challenges in testing children for HIV.
159
But first familiarize the participants with the UN Convention on the Right of the Child (CRC):
The CRC provides an important framework to guide any response to HIV and AIDS prevention,
care and support of children. It states that children shall be protected from discrimination; that the
"the best interests of the child shall be a primary consideration”; and it obliges governments to
offer children, in accordance with their maturity, an increasing role in decisions that affect them.
The CRC and the U.N. Declaration of Commitment on HIV and AIDS both affirm “the right of the
child to the enjoyment of the highest attainable standard of health.” The CRC General Comment
No. 3 compels governments to give children access to "adequate information related to HIV AND
AIDS prevention and care" and states that HIV testing and counselling (HTC) is "fundamental to
the rights and health of children" and should be made accessible along with the protection of their
rights. Thus, the provision of HTC to children should follow a rights-based approach grounded in
the “three c’s” of consent, counselling and confidentiality. Any testing must ensure that the best
interests of children are considered.
International commitments made in 2001 state that national policies should be implemented to
provide a “supportive environment” for children infected and affected by HIV and AIDS, including
counselling and access to health services as well as protection from discrimination. Access to
HIV testing and counselling for infants and children may often be regulated by local legislation
that is unclear with respect to service provision for infants and children, particularly in cases of
those who lack a parent or legal guardian.
Situation on children and HIV and AIDS
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An estimated 2.1 million children living with HIV worldwide as of end of 2007
The HIV infection rate amongst children and orphans increasing in many countries
worldwide.
Over half a million are newly infected each year.
Some 15 million children under age 18 have lost one or both parents to AIDS.
About 50% of HIV-infected children will die prior to their 2nd year of life without access to
life-saving drugs including anti-retroviral therapy (ART).
Progress in PPTCT and Paediatric Treatment
The last 2 yrs marked improvements in the (PPTCT) of HIV and in paediatric treatment.
• In 2006, 351,034 HIV positive pregnant women living in low and middle income countries
received ANV prophylaxis to reduce the risk of PPTCT of HIV, a 60 % increase from
220,085 in 2005.
• In 2006, 127,300 HIV positive children benefited from AIDS treatment programmes, an
increase of 70 % from 75,000 in 2005.
• Provider-initiated and rapid HIV testing/counselling in ANC and delivery settings is
increasing the number of women know their HIV status and can benefit from PPTCT and
other HIV prevention, treatment, care and support services.
Important considerations for HIV testing of children
HIV Testing and Counselling – HIV testing and counselling with:
•
a rights-based approach
•
in a non-judgemental
•
non-discriminatory and child-friendly manner
•
age-appropriate language
•
communication methods should be used that children of varying ages are able to
comprehend
•
Use of child-focused counselling techniques and child-friendly approaches.
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Importance of testing in Children
Increasing children access to adequate HIV testing services is essential and will help with:
• early identification of infants/children who are HIV-infected for treatment and care;
• identification of HIV-exposed infants/children who are uninfected, facilitating follow-up
care/ prevention;
• enables dev of systems for early diagnosis in infants and for referral/linkage to appropriate
infant care and support;
• effective use of essential resources by targeting of ART to those who need treatment prior
to developing severe disease or who require post exposure prophylaxis (PEP);
• improvement of the psychosocial wellbeing of family and child;
• reduce potential stigma, discrimination and psychological distress for those HIVuninfected children and increase the chances of adoption for orphans;
• facilitation of life-planning for parents and/or children who are HIV-infected.
“Don’ts” of Testing
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Mandatory testing of children should not be undertaken under any circumstances and
state parties must protect against such testing.
It is neither ethical nor effective as a public health measure and is in violation of the rights
of a child and/or their guardian to freely choose to consent to (or refuse) testing and to
have his or her confidentiality and privacy maintained.
HIV testing/status should not and must not be used to deny other rights to a child or infant
(for example, to housing, education or care).
However, at times there is a duty to provide HIV diagnostic testing.
Settings for testing of children for HIV
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ANC or post-PPTCT programmes, orphanages
Hospitals and clinics and outreach services
TB programmes, nutrition and child health services
Shortly after birth for early diagnosis of HIV
For the purposes of individual diagnosis in a child who is ill (e.g. presenting with an HIV
related illness);
In cases where a child has been exposed or potentially exposed to HIV through
• mother-to-child transmission
• sexual abuse
• sexual activity
• within a healthcare setting (e.g. through contaminated needle sticks or receipt of
potentially infectious blood), or through other means;
On admission to orphanages or other institutions
Among street/vagrant children through NGO settings
Testing Criteria
There is a lack of both knowledge and country-level operational guidance in numerous areas
relating to the provision of HIV testing and counselling to children.
• Policies/guidelines for adults/adolescents exist;
• Few guidelines offer specific details on providing testing services to young
children/infants;
• Few guidelines offer specific guidance on ensuring that a child’s rights and best interests
are taken into consideration;
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Govt responsibility for providing routine/diagnostic HIV testing services to infants and
young children is sometimes not taken up;
Clear guidelines that reflect both needs and rights of children are often missing.
HIV testing procedure – Under 18 months
With respect to testing algorithms and HIV diagnosis in children, proper, age-appropriate
testing algorithms are essential when undertaking HIV testing in young children.
• Infants and children inaccurately labelled as HIV-infected result in missed prevention
opportunities; decreased chances of adoption for orphans; and potentially increased
levels of stigma, discrimination and psychological distress for the child.
• When initiating diagnostic testing for HIV be aware of both the recommended testing
procedures and the limits of any testing used for diagnosis in infants and children.
• If possible, testing for infants below the age of 18 months should be undertaken with
virological testing as interpreting HIV antibody tests are complicated by the persistence of
maternal HIV antibodies most notably in the first year of life.
• If virological testing is not available, children who are exposed to HIV or are diagnosed
HIV infected based on antibody testing must have appropriate follow-up services assured.
• National testing algorithms for infants/children based upon WHO recommendations should
be promoted and training provided to healthcare providers in the field to ensure that ageappropriate protocols and proper diagnoses are supported.
• HIV testing protocols need to outline diagnostic HIV testing algorithms for sick infants and
for systematic follow up of HIV exposed children.
• Virological testing is crucial for the accurate diagnosis of HIV infection in young children,
and services to provide access to such testing need to be established.
• Dried blood samples (DBS) should be used to enable specimens from remote locations to
be tested.
Consent
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In general, HIV testing should be undertaken once an individual to be tested is both
informed of the benefits and risks of testing and voluntarily agrees to it.
Children <10 years of age in particular, present a special circumstance for obtaining
consent which may be affected by both policies and provider judgement.
While parents/legal guardians often give consent on behalf of their children for medical
procedures, including HIV testing, a child has the right to “participate in decisions affecting
his or her life.”
Obtaining free and informed consent from or for children and infants can be difficult,
particularly in cases where there is no parent or legal guardian.
Consent laws are often either unclear, do not give consenting-rights to informal caretakers
or medical staff (in cases where there is no parent or legal guardian) or are contradictory
in contrast to other ages of consent (e.g. marriage or pregnancy termination).
The definition of informed as it applies to children of varying ages may be a source of some
confusion for healthcare workers.
• Orphans, child-survivors of rape, abandoned infants and street children are instances
where a parent or legal guardian may be unavailable to give consent.
• Testing a child that acquired HIV through peri-natal transmission implicitly tests that child’s
mother. Parents may refuse to allow testing of their child based on this or other reasons.
• Consent policies and laws must seek to strike a balance between increasing access and
maintaining a rights-based approach.
• Policies must be formulated and systems established to ensure this balance is achieved.
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•
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Seeking consent either legally or extra-legally (depending upon a country's laws) from
healthcare workers, informal caretakers or NGO representatives or simply test without
obtaining consent.
Such practices may or may not be in a child’s best interest and national HIV testing
policies need to strive to offer clear protocols that both protect the child’s rights and
ensure his or her access to medical care.
Specific Actions on Consent
Policies must clearly articulate who may consent for a child and at what age a child may
consent for themselves (or for others, as may be the case with child-heads of households).
• Consent laws can be amended to increase access to HIV testing, by lowering the age at
which a child may consent (e.g. from 14 to 12 years), making allowances for “mature” or
“emancipated” minors etc.
• Guidance on child-friendly approaches to informed consent need to be elaborated for
healthcare providers; child-friendly consent forms and protocols should be used to ensure
age-appropriate information has been given to and is understood by any child to be
tested.
• Country-level frameworks or guidelines and healthcare providers training for assessing
maturity and determining what “informed consent” means with respect to children of
different ages need to be available.
• Clearer guidelines and/or trainings regarding the best interests of children and infants are
needed to help inform healthcare providers in their decision-making.
• In cases of parental-refusal to test where such testing is clinically indicated and in a child's
best interest, country-level guidelines should provide healthcare workers with guidance on
counselling parent(s) and/or potential legal bypasses to ensure the child is not denied
access to treatment and care.
• Country-wide systems must be implemented to ensure that children's rights are not
breached.
Telling a child he/she has HIV
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Many parents fear that telling children they have HIV will add to the stress and anxiety
they already feel.
Telling children with honesty and compassion, knowing their HIV status can reduce their
confusion and anxiety.
Strengthen their relationships with caregivers, and help them understand why adherence
to a treatment regime is so important.
It is especially vital for children to know their status before they begin to explore their own
sexuality.
The African Network for the Care of Children Affected by HIV and AIDS recently
developed a curriculum that addresses disclosure issues within psychosocial care and
counselling for HIV infected children and adolescents.
Important to develop local guidelines to help people find ways to talk to children about
AIDS in the context of prevailing customs and norms.
For example in Thailand, MSF has developed fairy tales and dolls to help guardians
explain to young children why they need to take medicine.
Disclosure
•
Disclosure is defined as "informing any individual or organization…of the sero-status of an
infected person…or by the person him or herself…with or without consent."
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Every child has a right to have his or her HIV-status kept confidential. This protection is
granted by the CRC that obliges member states to respect the privacy of the child.
“Information on the HIV status of children may not be disclosed to third parties, including
parents, without their consent.”
Parameters for confidentiality need to be well defined and understood by all stakeholders
involved.
Confidentiality is intimately linked to disclosure and issues of disclosure and informing
young children can be complex.
Protocols must be clearly elaborated and work to maintain confidentiality while also
ensuring the best interests of the child.
Providers must be clear on to whom, when and how best to inform or disclose a child’s
HIV status.
Informing of HIV status may occur at a number of levels: from counsellor or healthcare
worker to the parent or the child; from the parent to the child.
Disclosure may also occur at a variety of levels: from the counsellor or healthcare worker
to other stakeholders (including other healthcare settings, relatives, schools, orphanages,
etc.) and from the child to others (including relatives, other children, neighbours. etc).
Healthcare workers may also disclose to other healthcare workers.
Informing and disclosure of HIV status warrants special consideration given the possible
negative outcomes for the child and his or her family related to stigma and discrimination.
Both advantages and risks exist and should be communicated and understood by all
parties involved.
Specific Action on Disclosure
• Specific guidelines for informing a child of his or her HIV-status are needed and should
include when and how to inform at various levels (e.g. counsellor to child, parent to child,
etc).
• Specific guidelines for the disclosure of a child's HIV status are needed. A best interest,
need-to-know basis should be elaborated for the case of healthcare workers or parents
disclosing to other third parties.
• Guidelines outlining advantages and potential risks associated with informing and
disclosure; healthcare providers should be aware of both.
• Reasons for disclosure and non-disclosure in a given country need to be considered for a
range of settings (PPTCT programmes, childcare homes, outreach services, etc) and
addressed wherever it is not in a child's best interest (e.g. disclosure to exclude the child
from services).
Challenges in testing children
• Young children and infants rarely initiate the HIV testing process.
• They are primarily tested in provider-initiated (or parent/caretaker-initiated) contexts rather
than through traditional voluntary counselling and testing (“VCT”) programmes.
• Given this, issues of consent and rights-based approaches are of particular importance.
Counselling and confidentiality
Remark: The information provided below is specific to children since general counselling
guidelines are to be covered in Module 1.
1. The basic principles of counselling are the same as for counselling an adult.
The basic principles are:
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Establishing a relationship with the child
Helping the child tell his/her story
Listening carefully
Providing correct information
Helping the child make informed decisions
Helping the child recognise and build on their strengths
Helping the child develop a positive attitude to life
They do not involve:
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Making decisions for the child
Judging, interrogating, blaming, preaching, lecturing or arguing
Making promises that you can not keep
Imposing beliefs on a child
2. Counselling may be provided to children and young people individually or as part of family
counselling.
Strategies for one-to-one counselling:
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Follow the usual “good practices” of counselling – prepare yourself, create a welcoming
environment and keep records of important developments
Make the session Child-centered – see counselling as a 2-way process with the child as
an active participant rather than a passive recipient and to a greater extent as the leader
of the session
Establish boundaries of confidentiality – ask about any issues they do not wish to disclose
and to whom
Continually acknowledge and validate what the child feels and says about a situation
Observe both what the child says and does – be attentive to body language and eye
contact
Encourage them to access additional support to meet their overall health needs
Strategies for family counselling:
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Follow the usual “good practices” of counselling (see above)
Discuss the advantages and disadvantages of individual versus family sessions and agree
with the child and the family on who should/should not be present
Recognise the need to use appropriate methods – e.g., play for children, drama for a
teenager
Family is usual entry point for counselling so establish good relationship with child and
family
Agree and establish confidentiality on issues raised by child and family members
Work with child and family on creative and supportive ways to address family relationships
Explore with family why tradition make it hard for children to talk openly and if necessary
involve a third party like a youth worker to facilitate the parent-child conversation
Build a team spirit – e.g., ensure that sessions do not focus solely on HIV+ child or parent
but involve discussions on how everyone feels about family life and HIV and AIDS
Encourage family member (or parent) to continue discussions outside the counselling
sessions as well
Encourage them to access additional support
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3. Common situations where children and young people need counselling include HIV testing,
disclosure of HIV test results, death or illness of a family member and sexual abuse. These are
sensitive issues and children should not be forced to tell their story. The reasons for their difficulty
include:
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Tradition-based barriers to communication – e.g., some cultures forbid disagreements
with adults
Embarrassment on discussion of taboo topics
Fear of hurting their loved ones or angering them
Too young to verbalize their feelings – counsellors must therefore use age appropriate
methods
To address these barriers, counsellors must meet children on their level. This involves using
creative and non-threatening methods like drawing, play, drama, and story-telling.
4. “Joining” is a crucial method to the process of establishing a relationship with the child and
must be age appropriate.
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For children under 5 years: Get down on the floor with them and find a game they like to
play
For children 6-12 years: Find a fun, relaxing activity such as a magazine or an object to
discuss
For adolescents 13-18 years: Find out their interests and ask about their likes and dislikes
5. There are several major issues that counsellors must consider when working with children:
Confidentiality
Confidentiality is about respecting and withholding private information. It can pose challenges
in relation to children like:
 The counsellor may feel that releasing a child’s information would be in the child’s best
interests but conflict with those of the parent
 It may be a burden on the child to keep their own information confidential as children tend
to be naturally spontaneous and struggle to keep secrets
To maintain confidentiality, counsellors must therefore do the following:
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Reassure the children and family that information divulged in the sessions will remain
confidential
Explain when confidentiality may be broken such as a life threatening situation affecting a
child’s physical welfare
Explore the child’s underlying fears about information disclosure and empower them to
talk freely about difficulties in keeping information confidential
Encourage child and family to reach consensus about confidentiality. If this is impossible,
get help from relevant support groups such as church.
Personal issues
 It is vital to be honest about your own feelings regarding sensitive issues like HIV and
AIDS, death and bereavement, sexual and other forms of abuse
 Consider how such feelings or biases may influence the counselling sessions with
children
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Separate the emotional involvement with the child you are working with from emotional
issues in your life by having your own support system in place
Activity 4.1.2: Group Work
Discuss strategies to promote child-friendly testing. Divide into 3 groups. Groups will be
provided with list of strategies to discuss:
List of strategies to discuss should include but not limited to the following:
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Convention on the Rights of the Child and its principles
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Counselling
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Consent
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Confidentiality
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Disclosure
Methodology
 Divide trainees into 3 groups
 Provide list of suggested strategies
Materials
 Flip charts
 Felt-pens
Duration: 30 Minutes
Session 4.2 Treatment
Time: 1:30 h
Key points
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Importance of treatment
Special considerations in treatment of HIV infected children
When to start and what types of treatments
Adherence
Settings in which treatment is given
Challenges of Paediatric treatment
Trainer Instructions:
Presentation 4.2, Activity 4.2.1, Activity 4.2.2
Notes for the Facilitator:
Activity 4.2.1: Brainstorming
This activity aims at improving participants’ knowledge about types of HIV treatment available for
children. It should enable the trainer to discussing with participants importance of early treatment,
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available drugs, age issues, adherence and implications for HIV treatment. The use of lead
questions based on additional materials will be employed.
Methodology
Group discussion
Duration: 20 minutes
Activity 4.2.2: Group discussion
Discuss factors in HIV treatment with particular attention to enhancing, measuring and barriers to
adherence.
Duration: 20-30 minutes
Presentation and discussion – 45 Minutes
The focus of this presentation is on new development on HIV treatment for children, rationale for
early treatment, types of HIV drugs, age issues, adherence and challenges in treatment. Some of
the issues may have been covered in module 1. The trainer will therefore build on earlier
knowledge during this session. Participants will be encouraged to discuss the issues with
relevance to local conditions.
Treatment
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HIV infection progresses more aggressively in infants than in adults.
The immune system in childhood is underdeveloped, and acquiring HIV infection early in a
child’s life thwarts its further development.
Early treatment within the first few months of life can dramatically improve the survival
rates of children with HIV.
A South African study found that mortality was reduced by 75% in HIV-infected infants
who were treated before they reached 12 weeks of age.
Because treatment for children is often provided in a clinic other than the one in which the
mother received antenatal care or delivered her infant children exposed to HIV often go
unrecognized when they visit immunization clinics and other care-delivery points.
Until recently, access to paediatric ARV treatment was limited by a lack of ARV drug in
formulations appropriate for use in children. People caring for HIV-infected children often
had to crush adult tablets and estimate the right doses.
The drugs are now procured by governments through UNICEF’s Supply Division, WHO,
Clinton Foundation and PEPFAR, but more efforts are needed to get affordable and better
paediatric combinations pre-qualified and registered.
The majority of the children living with HIV can be saved by timely administration of
paediatric antiretroviral treatment (ART) and Cotrimoxazole, a low-cost antibiotic that has
been shown to have positive impact on HIV-infected children’s survival.
Access to paediatric HIV treatment has improved as a result of dramatic price reductions
in ARV drugs, increased and continued advocacy, and greater involvement of partners in
paediatric HIV care.
The positive trend is likely to continue with the recent approval of a 3-in1 fixed-dose
generic paediatric antiretroviral combination by the US Food and Drug Administration and
WHO.
Integration of paediatric HIV care and treatment in adult ARV treatment sites using familycentered approaches has helped increase children’s access to HIV services and should
be supported.
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Factors facilitating treatment
Programmes for paediatric HIV care and treatment have benefited significantly from several
factors:
 Integration of paediatric HIV and AIDS and treatment into existing ART programmes as
well as within Maternal/Child Health programmes.
 Increased testing of children, particularly where sick children are seen and those living
with HIV are likely to be diagnosed.
 Access to virological testing through dried blood spots specimen collection and transport
methods for children known to be exposed has been active in linking HHIV-infected
children to care and treatment prior to the onset of severe disease or even death.
 Reduced drug prices.
 Approval of fixed dose generic ARV combinations and better forecasting of paediatric drug
needs.
 Age Appropriateness.
 Age-appropriate language and communication methods should be used that children of
varying ages are able to comprehend.
 Use of child-focused counselling techniques and child-friendly approaches.
 Follow-up in children has often been cited by implementers as problematic and services
that ensure infants and children are supported beyond initial visits need to be developed.
 Non-judgemental, non-discriminatory, child-friendly manner.
 Adequate follow-up care for post-PPTCT infants and children are needed, both for
confirmatory testing and for treatment, care and support.
Types of treatment available for children
 Until recently, access to paediatric ARV treatment was limited by a lack of ARV drug in
formulations appropriate for use in children. People caring for HIV-infected children often
had to crush adult tablets and estimate the right doses.
 More children received ART in 2006 than in the year before (127,300 in 2006 vs. 75,000
in 2005) an increase by 70%.
 What types of treatment are now (becoming) available to children?
• More than d4T/3TC/NVP preparations
•
Crushable and dispersible tablets/granules
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Appropriate drug ratios for children based on PK
•
Dual as well as triple FDC
•
To be affordable
Implications for When to Start Antiretroviral Therapy in Children
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Children <1 year are at high risk of death; aggressive treatment seems warranted.
However:
• Need to build capacity for early diagnosis
• Viral suppression with ART less in infants
• Limited paediatric formulations
• Minimal data on dosing in children
• Limited data on efficacy of early treatment
Challenges in Treatment of HIV-Infected Children in Low Resource Settings
•
Paediatric formulations
• Fewer ARV approved in children
• More costly than adult preparations
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• FDC just becoming available
Dosing weight/size based, change as child grows problems for busy health clinic.
Liquid drugs transport/storage problems.
Complexity of therapy in context multiple co-morbidities (TB, malaria, malnutrition…)
Adherence in treatment
Remark for the facilitator: This information is mostly covered in Module 2 and 3 but
repeated here in case you use Module 4 as stand alone module.
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One of the most concerns of ARV programmes is the ability of PLHIV to maintain near
perfect adherence over the long term.
In order to achieve the goal of antiretroviral therapy (ART), undetectable levels of the virus
in the blood, patients are required to maintain more than 90-95% adherence.
Adherence is defined as a patient’s ability to follow a treatment plan, take medications at
prescribed times and frequencies, and follow restrictions regarding food and other
medications.
Both patients and health care providers face significant challenges with respect to
adherence to ART.
What is Adherence?
Adherence is defined as ‘the act or quality of sticking to something – to adhere to something’. In
the context of treatment with medications, adherence means a more collaborative process
between the patient and provider. The patient plays a more active role in his treatment and
makes a commitment to follow the prescribed regimen as best as possible.
How is it different from ‘Compliance’?
The dictionary defines compliance as ‘the act of conforming, yielding or acquiescing’ implying
thereby a lack of patient participation. Here there is lack of sharing in the decision made been
provider and client.
Consequences of poor adherence
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Incomplete viral suppression
Continued destruction of the immune system – CD 4 cell counts
Disease progression
Emergence of resistant viral strains
Limited future treatment options
Higher costs to the individual and ARV programme
Forms of non-adherence
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Missing one dose of a give drug
Missing multiple doses of one or more prescribed medications
Missing whole days of treatment
Not observing the intervals between doses
Not observing the dietary instructions
How common is non-adherence?
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More than 10% of patients report missing one or more doses on any given day
More than 33% report missing doses in past 2-4 weeks
Providers cannot easily accurately guess whether a given patient will be adherent or not
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Factors influencing adherence
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Disease characteristics
Treatment regimen
Patient variables
Patient provider relations
Clinical settings
Measuring Adherence
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Self reports
Pill counts
Pharmacy records
Biological Markers
Electronic monitoring devises (dosing histories compiled electronically and data controlled
in pharmacies when patients collect their ARVs)
Measuring drug levels
Enhancing Adherence
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Counselling
Medical diaries
Pill boxes
Buddy system (peer, friend, parent, family)
Modified Directly Observed Therapy (DOT)/ Directly Administered ART (DAART)
Incentives (food, transport etc)
Electronic devices – alarm, pagers, beepers etc
Barriers to adherence
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Communication difficulties – between a family member or child and the healthcare
provider or between a child and their parent – communicating if they feel ill and cannot
take their medication.
Literacy level – If the family member or child can read, they can become better informed
and manage their disease more efficiently.
Inadequate knowledge or awareness of HIV disease – even children need to be informed
as much as possible up to their maturity level.
Inadequate understanding of treatment regimen
Discomfort with disclosure of HIV status
Patient attitudes and beliefs in treatment efficacy
Depression and other psychiatric problems
Alcohol and/or active drug use – many street children are using.
Unstable living conditions – it may be difficult for children living on the streets to adhere to
their medications.
Negative or judgemental attitude of health providers – child-friendly services are important
to sustain life-long clinical appointments.
Difficult life conditions – If parents are also sick, it may be difficult to support their children
in adherence; or if children are living between their families and the streets.
The Challenge of Paediatric HIV Infection in Resource-Poor Countries
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While high rates of HIV infection in women, few women know they are infected and there
is poor access to ARV to prevent mother to child transmission.
Children often present to health system with advanced disease.
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Rapid progression and high mortality due to HIV in children, yet few receive treatment.
Early treatment would prevent many deaths but infant diagnosis not available.
Family Centered Approach to HIV
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A growing number of programmes are taking a family-centered approach to HIV, offering
testing, treatment and other services to all members of a single household in one location.
Integration of paediatric HIV care and treatment in adult ARV treatment sites using familycentered approaches has helped increase children’s access to HIV services and should
be supported
The family-centered approach to HIV treatment can strengthen other services because it
helps programmes planners to recognize that paediatric HIV treatment is most effective in
the context off strong child survival and maternal health programmes.
Challenges to scale up of treatment
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Low PPTCT coverage and uptake rates.
Poor follow-up of children known to be exposed with Cotrimoxazole prophylaxis and early
diagnosis results is unnecessary morbidity and mortality.
Insufficient laboratory capacity results in dangerously late diagnosis.
Limited access to family based treatment sites that deter from routine care and treatment
for children.
Monitoring and Evaluation systems insufficiently focused on the needs of children results
on lack of data to mobilise national and global commitments.
Session 4.3 Care and Support for children affected by HIV and AIDS
Time: 1:30 h
Key points
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Who are CABA?
What are the issues around CABA?
Special considerations in care and support for CABA
Why include CABA; Social support; psychosocial support; home
based care;
Linkages into medical services and birth registration; material
support;
Stigma and discrimination and community awareness.
Trainer Instructions:
Presentation 4.3, Activity 4.3.1, Activity 4.3.2
Notes for the facilitator:
Activity 4.3.1: Brainstorming
This activity is designed to improve participants’ knowledge about care and support for children
affected by HIV and AIDS (CABA) with a focus on stigma and discrimination. It should enable the
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trainer to discuss with participants importance of why include CABA in testing, treatment and care
services.
Methodology
Group discussion
Handout 4.3.1 and 4.3.2:


Stigma and discrimination
Care and support needs of orphans and vulnerable children
Duration: 20 minutes
Presentation and discussion
This activity will focus on who are CABA? What are issues around CABA? Special attention for
stigma and discrimination and CRC principles and CABA. Participants will be encouraged to
discuss the issues with relevance to local conditions.
Children Affected by HIV and AIDS - CABA
Who are we talking about?
Three groups of children are directly “affected” by the epidemic:
•
•
•
Children who are HIV-positive themselves;
Children who have a parent (or two) who have died from AIDS;
Children who have a parent (or two) living with HIV;
Sometimes this group is expanded to include children living in a household with any infected
person – for example a sibling – or families which take in children orphaned by AIDS.
What are the Issues?
•
•
•
•
Impoverishment: HIV and AIDS is often connected to poverty, both as a cause and an
effect. Many affected households lose their income, deplete their savings, and borrow
money to survive. Children are often withdrawn from school to supplement household
income. Death from AIDS is associated with the disinheritance and social rejection of
widows and orphans.
Stigma and discrimination: Overcoming stigma is the 2nd most important intervention for
CABA, next to providing medical treatment for their parents.
Self Exclusion: A very important dimension of stigma and discrimination is the extent to
which affected people avoid actions which may expose their status.
Myths and Misconceptions: It appears from studies in South Asia that stigma and
discrimination are based on fear, and that this fear arises from a collection of myths and
misconceptions surrounding the virus.
Convention on the Rights of the Child as the framework for testing, care ad
support for children
Remark for the facilitator: This information has been provided at the beginning of Module
4, however, it is important to reiterate as the CRC supports advocacy efforts for children
infected and affected in terms of treatment, care (infected) and support (both).
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•
•
•
•
•
•
•
The UN Convention on the Right of the Child (CRC) provides an important framework to
guide any response to HIV and AIDS prevention, care and support of children.
It states that children shall be protected from discrimination; that the "the best interests of
the child shall be a primary consideration”.
It obliges governments to offer children, in accordance with their maturity, an increasing
role in decisions that affect them.
The CRC and the U.N. Declaration of Commitment on HIV and AIDS both affirm “the right
of the child to the enjoyment of the highest attainable standard of health.”
The CRC General Comment No. 3 compels governments to give children access to
"adequate information related to HIV and AIDS prevention and care" and states that HIV
testing and counselling is "fundamental to the rights and health of children".
Thus, the provision of testing, treatment, care and support to children should follow a
rights-based approach grounded in the “three c’s” of consent, counselling and
confidentiality.
In other words these services must ensure that the best interests of children are
considered.
Care, Support and Treatment – Why include CABA?
Should be same principles as for other children – CRC applies to all children irrespective
of their status, situation, race, gender etc
• Non-discriminatory and child-friendly manner.
 Age-appropriate language and communication methods should be used that children of
varying ages are able to comprehend.
•
Care and support needs of orphans and vulnerable children:
The impact of HIV and AIDS on children and their families is not a simple problem with an easy
solution. The current situation is complex, interrelated on all levels of life, and cuts across all
sectors of development. State-of-the-art components for the care and support of orphans and
other vulnerable children have evolved from lessons learned in various countries and experiences
from development, child survival, children of war, and other HIV and AIDS-related programs.
These lessons include:
Policy and Law: Appropriate government policies are essential to protect orphans and other
vulnerable children and their families. These policies must contain clauses to prohibit
discrimination in access to medical services, education, employment, and housing, and protect
the inheritance rights of widows and orphans.
Medical care: For the maximum well-being of orphans and other vulnerable children, they and
their guardians need to have access to complete, relevant information and appropriate health
care including clinical and preventive health care services, nutritional support, palliative and
home-based care.
Socioeconomic support: Orphans and other vulnerable children and their families are
confronted with severe threats to their well-being including isolation, loss of income, educational
access, shelter, nutrition, and other essentials. When families and children are forced to focus on
basic daily needs to decrease their suffering, attention is diverted from factors that contribute to
long-term health and well-being.
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Psychological support: The psychological needs of children continue to be one of the most
neglected areas of support. But the AIDS pandemic has increased the urgency to address the
psychological problems of children on a par with other interventions.
Education: Education plays a vital role in the well-being of children. It offers them a chance for
their future as well as developmental stimuli. The impact of HIV and AIDS on the educational
system has resulted in a decreasing number of teachers due to mortality, a growing number of
children who are not able to attend or stay in school, and rising numbers of pupils whose ability to
take advantage of schooling is undermined by other factors including poor nutrition and
psychological stress.
Human rights: Human rights-based approaches have been increasingly recognized as essential
to the success of HIV prevention and care programs, including those working with children and
adolescents. Especially important are those tenets outlined in the convention of the rights of the
child.
Community-based programs: There is no agreement on the components of community-based
programs for orphans and other vulnerable children. Prioritizing program activities will depend
upon community needs, abilities, and preferences, as well as on the nature of sponsoring or
partner organizations. The community is best able to identify target groups for interventions,
although the government may wish to select target regions or communities for program
implementation.
The following should also be considered in designing such programs:
Emphasizing community care rather than institutional care: Long-term institutionalization of
children in orphanages and other facilities is not a desirable solution to the impacts of HIV and
AIDS. Resources expended to fund institutional care for a single child can assist scores of
children if used effectively to support a community-based initiative. The institutionalization of
children separates them from families and communities and often delays healthy childhood
development.
Strengthening the care and coping capacities of families and communities: The first line of
response to the needs of children affected by HIV and AIDS comes from extended families.
Strengthening the capacity of communities to fill the widening gaps in the safety net traditionally
provided by the extended family may be the most efficient, cost-effective, and sustainable way of
assisting orphans and other vulnerable children. Families and communities also play a crucial
role in identifying children who are most in need, both those affected by HIV and AIDS and other
vulnerable children.
Involving children and youth as part of the solution, not part of the problem: Children are
not simply a passive, powerless target group to be aided, but capable actors and important
resources to engage in a community response to HIV and AIDS. Actively involving children in
care initiatives can build their sense of self-esteem and efficacy and cultivate skills they can use
in the future.
Building broad collaboration among key stakeholders in all sectors: To meet the needs of
children affected by HIV and AIDS, there have to be broad networks and targeted advocacy to
involve government, civil society, and nongovernmental organizations in shared initiatives of
community action for orphans and other vulnerable children.
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Application of long-term perspective: Children will continue to be affected by AIDS for
decades to come. Due to the scope and scale of the pandemic, program design requires
sustainable and replicable approaches. Although material assistance is important, it is also
important to ensure that community projects are not driven by material support alone but by
ownership and responsibility.
Integration with other services: Since the problems experienced by orphans and other
vulnerable children begin well before the death of their parents, care for children affected by HIV
and AIDS should start at the earliest possible point. Services for orphans and other vulnerable
children should be integrated with the elements of comprehensive care such a voluntary
counselling and testing for HIV, prevention of mother-to-child-transmission of HIV, and others.
Linking care and prevention: Orphans and other vulnerable children are themselves at high risk
of HIV infection due to economic hardship and loss of parental care and protection. For this
reason alone, care programs should include a strong prevention component targeting children
and youth.
UNAIDS definition of HIV-related stigma and discrimination
“…a ‘process of devaluation’ of people either living with or associated with HIV and
AIDS…Discrimination follows stigma and is the unfair and unjust treatment of an individual based
on his or her real or perceived HIV status”.
Vulnerable groups at high risk for stigma
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•
•
•
•
•
•
People living with HIV and AIDS (PLHIV) and their families including children
Injecting drug users and their partners
Female and male sex workers and their clients (e.g. truckers), partners, spouses
Males having sex with males (MSM)
Migrant workers (e.g. male migrant workers and their wives)
Women and young girls
Street kids, out-of-school youth
Why stigma and discrimination?
•
•
•
•
Major obstacles to scaling up in all programmes in the region, at all levels
Hamper effective prevention, treatment and care
A need to shift from insights to action
More learning by doing from persons, groups and networks who are stigmatized
Stigma and medical conditions
•
•
•
Disease stigma is greatest when:
• Not well understood
• Perceived as contagious (physical, social) and a threat
• Associated with perceived ‘deviant’ behaviour
• Viewed as the responsibility of the individual
• Condition is severe, degenerative, or disfiguring
• Undesirable and unaesthetic death
• Distinguish and label differences
• Associate negative attributes to perceived differences
Separation of ‘us’ from ‘them’
Status loss and discrimination
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Cycle of Stigmatization
Cycle of Stigmatization
Marker
Greater susceptibility and
vulnerability to HIV & AIDS
Discrimination
Loading
Stigma
Adapted from Sartorius, N., 2006.
Adapted from UNAIDS, 2007.
Forms of stigma & discrimination
•
•
•
•
•
Physical
• Physical isolation and violence
Social
• Social isolation, loss of identity and role
Verbal
• Insults, taunts, blame, gossip, and rumours
Institutional
• Loss of livelihood, employment opportunities, housing & education
Multi-layered stigma
• Among people already socially excluded (MSM, FSW, IDU)
Stigma and discrimination
Remark: The information provided below is specific to children since stigma and
discrimination is mainly covered in Module 2.
This section looks at issues relating to stigma and discrimination and how they affect orphans and
other vulnerable children. Stigma and discrimination mean that people are not treated equally or
fairly.
Key points about stigma and discrimination are:

Stigma is based on beliefs. A person is 'stigmatised' when another person thinks
negatively of them because of something they have experienced or because they belong
to a particular group. Discrimination occurs when actions are taken (or not taken) on the
basis of a stigmatising belief.

HIV/AIDS leads to stigma and discrimination.

Stigma and discrimination occur in many settings, including the family, local community,
school and health care facilities.

There are many negative effects of stigma and discrimination.
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
Stigma and discrimination go against a child's right to be treated equally and fairly.

There are many actions which can be taken by individuals and organisations to overcome
stigma and discrimination.
Children and young people in other groups may also experience stigma and discrimination.
These include orphans, children of women who sell sex, street children, refugees, children in
detention, children who use drugs and children in child-headed households. Many of these
experience 'double' stigma because they are also more vulnerable to HIV.
Effects of stigma and discrimination
Children and young people experience stigma and discrimination in different places. These
include at home, in their local community, in schools and at health care facilities. This may result
in children and young people being denied access to health care and education.
Effects of stigma and discrimination include:
• Fear of members of the stigmatised group.
• Verbal and physical abuse of children and young people.
• Fear of disclosing information, including results of HIV tests. This may mean that people
do not get the treatment they need.
• Reduced self-esteem and confidence among children.
• Children and young people being isolated socially. This can mean they are 'excluded' from
society.
• Withdrawal, depression and other psychosocial problems.
• Children and young people running away from the place where they are experiencing
stigma and discrimination. This may involve them moving from rural to urban areas. This
carries the risk of them ending up living on the street.
Psychosocial Impact
HIV and AIDS has undermined the psychosocial wellbeing of young children, impairing their long
term development. Research and anecdotal evidence (Richter, Foster and Sherr, 2006:8) shows
that children
• have had to live with withdrawn, preoccupied and ill care givers
• have lost parents through illness and death
• have suffered social instability as they are moved from one home to another
• have been rejected by friends, neighbours and teachers due to the stigma of AIDS.
The right to equality
Children and young people have a right to be treated equally. If a child is treated differently just
because they belong to a different group, they are being discriminated against. This is against
their human rights.
Proposed action
The following actions can help overcome stigma and discrimination:
• Laws which ensure that children and young people are treated equally and fairly. Where
laws exist, communities need to understand what they mean. There also needs to be an
efficient and affordable way for people to use the justice system when a law is broken.
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•
•
•
•
Local advocacy on behalf of children and young people to ensure that communities tackle
stigma and discrimination and support children's rights to be treated equally.
Psychosocial support to children and young people experiencing stigma and
discrimination.
Allowing children and young people to participate in activities and decisions. Children and
young people can then challenge stigma and discrimination themselves.
Programmes must themselves avoid discrimination. This means, for example, that they
should not target only children whose parents have died of AIDS. In addition, they should
not use stigmatising terms such as 'AIDS orphans'.
Taking the following actions should ensure protection, care and support for CABA
• Focus on all affected children, not only orphans
• Support and strengthen families
• Overcome stigma
• Protect children’s rights
• Provide alternative care
Integrate affected children into broader initiatives
Such as national economic agenda, educational reform, labour policies, global HIV initiatives
Advantages:
• Potential for expanded scale
• Potential for long-term support
• Reduce chances of increasing stigma
Link with other Services
• VCT
• Home-based care
• PPTCT
• OI and ARV treatment
• Paediatric AIDS treatment
• PLHIV networks
• Birth registration
Increase Access to Services:
Health
Education
Protection
Food security and nutrition
Social Welfare benefits
HIV and AIDS Prevention
Shelter
Economic stability
Psychosocial support
Activity 4.3.2: Group work:
Discuss forms of stigma in Pakistan and propose ways to address them. Divide into 4 groups.
Duration: 30 min
Example from Pakistan:
Project Tools, Psychosocial support for children and their families affected by HIV and
AIDS
The tools were developed over the pilot phase of the project- Pak Plus Society, UNICEF and
PLHIV and their families. They are designed to help organisations working with HIV positive
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people support their clients to disclose their positive HIV status to their spouses and children;
determine when to test affected children for HIV; assess and monitor the emotional state of the
children; and implement support groups for affected children.
The tools comprise of:
 Disclosure Plan
 Testing Criteria of Punjab Province
 Emotional Assessment Tool
 Psychosocial Indicators
 Adapted Memory Box and Hero Book
Session 4.4 Issues on MARA
Time: 1:30 h
Key points:
Paying particular attention to
 those in streets, particularly IDUs and commercial sex
workers
 testing issues;
 care and support - whose responsibility?
 potential for integration or not into other services
Trainer Instructions:
Presentation 4.4, Activity 4.4.1, Activity 4.4.2 , Activity 4.4.3
Notes for the facilitator:
Activity 1: Brainstorming
Discussion on Who and Where are MARAs and why it is important to provide testing, treatment
and care to MARAs
Duration: 20 minutes
Presentation: Consideration of HIV testing and treatment for MARA, CRC
principles and challenges in programming for MARA
At the end of the session, the participants should have a basic understanding of the special
considerations and challenges of HIV testing, treatment and care for MARAs.
Who are MARA: Most at-risk adolescents engaging in HIV risk behaviours
Adolescent
 male and female IDUs who use non sterile equipment
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


males who have unprotected anal sex with males
females and males who sell sex, (including those who are sexually trafficked), and have
unprotected transactional sex
males who have unprotected sex with female sex workers (part of sexual initiation in many
countries)
These are not discrete groups:
 linkages between people who sell sex to support injecting drug use
 MSM may also have sex with women especially in countries where homosexuality is
illegal
Summary definition: Adolescents injecting drugs or engaged in unprotected sex with an
infected partner or a partner with high-risk behaviours.
•
In Pakistan adolescents living on the streets are most-at-risk, not necessarily because
they are living on the street, which makes them more vulnerable, but because most abuse
solvents, which lead them to engage in sex, including for commercial gain to buy more
drugs, or makes them less able to resist sexual exploitation or abuse. Adolescents
engaged in commercial sexual exchange who may be living within their homes still are
also considered most-at-risk.
•
These adolescents need prevention interventions to reduce risk. They should be directed
towards individuals to change their risk behaviours. Prevention interventions include
behaviourally specific life skills (including HIV/STI prevention and condom promotion) and
coherent IEC materials; STI treatment promotion; VCT promotion; and long-term solution
interventions such as education, vocational training and reintegration.
MARA are considered a vulnerable groups at high risk for stigma
• People living with HIV and AIDS (PLWHA) and their families, children
• Injecting Drug Users and their partners
• Female and Male Sex Workers and their clients (e.g. truckers), partners, spouses
• Males having sex with males (MSM)
• Migrant workers (e.g. male migrant workers and their wives)
• Women and young girls
• Street kids, out-of-school youth
Important considerations for HIV testing, treatment, care and support for MARA
•
•
•
•
•
Should be same principles as for other children – CRC applies to all children irrespective
of their status, situation, race, gender etc.
HTC delivered to children with a rights-based approach in a non-judgemental, nondiscriminatory and child-friendly manner.
Adequate follow-up care for post-PMTCT/PPTCT infants and children are important, both
for confirmatory testing and for treatment, care and support.
Age-appropriate language and communication methods should be used that children of
varying ages are able to comprehend.
Use of child-focused counselling techniques and child-friendly approaches.
Challenges in Adolescent HIV Care
• Linking to (and retaining in) health care
• Accepting (and adhering to) therapy (see study below as an example)
• Mental health issues.
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•
•
Complexities of transition from child to adult care.
High risk population for HIV transmission.
• 40-60% of HIV-infected adolescents continue to engage in unprotected sex.
• High rate substance use, smoking.
Adolescence is a transitional period of human development. A combination of physical, cognitive,
emotional, and social changes combined with coping with a life-threatening illness makes young
people infected with HIV an extremely challenging group.
Getting Youth Tested and Counseled
Information about Sexually Transmitted Infections (STI), including HIV, should be an important
component of the anticipatory guidance provided by pediatricians to their adolescent patients.
When risk factors are identified, HIV testing should be offered and encouraged.
Many young people do not routinely seek medical care, but only seek care when they are sick.
Proactive outreach efforts to promote HIV testing are required. These are some suggestions to
enhance HIV testing among youth:
 Convenient place and time
 Convenient and confidential testing
 Good Staff Attitudes
Linking and Retaining Youth in Health Care
The needs of HIV-infected youth for adequate medical and psychosocial care, including risk
reduction education, can only be met if there are effective mechanisms of linking youth that test
positive to care. Here are some suggestions:
 Meet youth where the test results will be given (e.g. community-based organization).
 Address immediate needs (e.g. stable housing, food and adequate sanitation, safety,
etc.).
 Offer educational and support services (mental health, drug addiction treatment, legal
services, nutritional support, etc.)
 Utilize peer educators because young people are more likely to listen to their peers than
to any adult.
 Promote attendance to follow up visits (cautious phone calls, home visits, use of
incentives)
 Offer a therapeutic alliance. Involve youth in their own care
 Use youth-appropriate adherence programs.
As an example for challenges in adolescents:
Difficulties in adherence for adolescents found in some studies:
Virological Outcomes and ART Adherence in Adolescents Compared with Adults in
Southern Africa
Jean Nachega et al. (#821, S. Africa)
•
Methods: Compared adolescents (aged 11 to 19) to adults who initiated ART between
1999 and 2006 for virological outcome and levels of adherence. Viral load measurements
were determined for 134 adolescents and 6288 adults within 1 year after ART initiation.
•
Results:
• Adolescents were found to be less likely to achieve 100% adherence at 6 months
(29% vs. 49%, p <0.001) or 12 months (15% vs. 34%, p = 0.001).
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•
Patients achieving 100% 12-month adherence were much more likely to achieve
virological suppression at 12 months, whether adolescent (91% of perfect
adherers suppressed at 12 months vs. 45% of others, p = 0.007) or adult (86% vs.
59%, p <0.001).
Conclusions: Compared with adults, adolescents in southern Africa have lower rates of
virological suppression, a relationship largely explained by poorer adherence to antiretroviral
therapy.
Challenges and Responses in Pakistan:
 The key partners in protecting children and adolescents in the context of HIV are the
National and Provincial AIDS Control Programmes (MoH) and the National and Provincial
Commissions for Child Welfare and Development (Ministry of Social Welfare and Special
Education).
 Initiatives for protecting children in the context of HIV have gained ground over the last
years but serious issues and challenges remain such as sexual practices related to
children (abuse/exploitation/incest) are not talked about nor openly advocated against in
media, access to at risk adolescent populations on the streets is made difficult by strict
law enforcement.
 Protecting children affected by HIV and AIDS and those most at risk to HIV have equal
challenges such as lack of social protection mechanisms, care-giver burdens,
psychological stress, and marginalisation from family and community.
 Situations for both these groups of children and adolescents are exacerbated by structural
factors such as poverty, poor levels of education, gender disparities and policy and
legislative weaknesses.
 There are current responses, however, that we can point to as first steps:
National AIDS Control Programme (NACP):
- Development of a Care & Support Framework
- Care and Support training for implementers
- Inclusion of Care and Support and MARA in the PC-1s 2008-2013.
- Development of VCT guidelines and behaviourally specific life skills for MARA
- Operational research for MARA including mapping, behavioural studies, and
quality of services for MARA
The National Commission on Child Welfare and Development of the Ministry of
Social Welfare and Special Education (NCCWD/MoSW):
- Inclusion of children affected by HIV and AIDS as part of the orphans and
vulnerable children group in both the draft National Protection Policy for
Children
- Interventions to protect children from abuse, neglect and sexual exploitation
and those in conflict with the law

United Nations’ agencies and NGOs are also contributing through support to the National
Association of People Living with HIV and AIDS and to NGO initiatives running
programmes for MARA and looking after the Care & Support of PLHIV and their families.
Despite the fact that there are organizations working on the protection of children in the
context of HIV, such initiatives are limited.
Activity 4.4.2: Group Work
Discuss strategies to promote MARA-friendly services. Divide participants into few groups.
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Duration: 20 min
Activity 4.4.3: Group discussion
Whose responsibility is it with regards to testing, treatment, care and support for MARA?
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Module 5 - Care and support for injecting drug users
Objective: To develop skills to provide efficient care and support to
injecting drug users
Total Time for module: 6:30 hours
Methods:
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

Group work
Presentation
Discussions
Content:
Session 5.1 Introduction to IDUs
Session 5.2 Harm Reduction Strategy
Session 5.3 Care and Support Tier 1
Session 5.4 Care and Support Tier 2
Session 5.5 Care and Support Tier 3
1h
1h
1:30 h
1:30 h
1:30 h
Note from the Service Provider Forum Pakistan:
Introduction to Care and Support for HIV positive IDUs
A meeting was held with key stakeholders to review a manual for HIV related care and support for
injecting drug populations in Pakistan. Stakeholders came from the civil society sector with
representation from the UN and from the provinces of Punjab, Sindh, Balochistan and the NWFP.
The first critical area to be clarified is the distinction between HIV and AIDS care and support and
treatment for addiction and its social consequences. Severe stigmatisation is evident for drug
users and people living with HIV and AIDS posing huge barriers to universal access to
treatments. It is suggested that the implementation guide capture some strategies that have been
used to promote and create enabling environments.
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The second critical area identified is the absence of "substitution" pharmacotherapy (despite a
new UNODC pilot) as a bridge from HIV management to management of opioid dependence. All
countries reporting low HIV among injecting populations have access to both needle syringe and
substitution services.
The third critical area requiring consideration is adherence related to HIV, TB and other long term
treatments. Provision of food, shelter and easy linkages to the services are seen to improve
treatment outcomes in marginalised settings.
The solutions to these critical areas for a good care and support program are in the application of
knowledge from the manual and not in the manual itself. It is hoped that these issues will be
discussed, reviewed and lead to updates and adaptations in care and support contexts.
Session 5.1 Introduction to IDUs
Time: 1 h
Key point
 Special needs of IDUs
Trainer Instructions:
Presentation 5.1, group work
Notes for the facilitator:
You can start with a brainstorming session and group work below.
In addition to the power point presentations 5.1 and 5.2 in Annex 1, you will find on the
disc several IDU related documents (from FHI & WHO, Burnet Institute and Sharan)
which you should consider for distribution (either by printing or burning on discs).
Group work
Ask the participants to consider the following issues related to Treatment, care and support of
HIV positive drug users for the next 30 minutes.










Positive prevention
Reaching families
Disclosure
Psychosocial support
Sexual Health
Oral Substitution Therapy
Adherence to ARVs
Treating Opportunistic Infections
Hep B or C co-infection
Prison/closed settings
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


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
Preparing for ARVs
Primary health care
Social support
Reintegrating with families
Rehab/detox
Material needed:
 Flip chart
Accessing and establishing services to the drug users
Before implementing the services for the injecting drug users it is important to understand the
patterns of injecting drug use, the risk behaviours, the adverse consequences as well as the
existing capacity and resources in the geographical location, where it is proposed to implement
the targeted intervention.
Rapid situation and response assessment
Key objective: To conduct situation and response assessment of injecting drug users and their
sex partners in a specified geographical location in order to design and develop appropriate
interventions based on the findings.
Operating principles

Rapid – assessment to be done in a short span of time

Community participation: involvement of both current and ex- users to reach mobile
hidden IDU networks.

Multiple methods employed [both qualitative (observation; in-depth interviews) and
quantitative data (survey) collected]

Data collected from multiple stakeholders (IDUs, sex partners of IDUs, service providers,
law enforcement and policy makers)

Triangulation of the data for analysis

Response developed based on the findings
UNODC in Pakistan is supporting the Anti-Narcotics Force and NGOs to conduct RRAs
in selected areas of Pakistan.
Session 5.2 Harm reduction strategy
Time: 1 h
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Key points
 A harm reduction approach is suggested as the main strategy
for intervention among the IDUs, especially to reduce the risk
of acquiring and transmitting HIV.
 According to WHO the most effective response to HIV in the
context of IDUs consists of a combination of prevention, care,
treatment and support within a harm reduction framework.
Trainer Instructions:
Presentation 5.2
Notes for the facilitator:
A harm reduction approach is suggested as the main strategy for intervention among the IDUs,
especially to reduce the risk of acquiring and transmitting HIV. This is primarily done through a
needle exchange programme and substitution therapy to bring about behaviour change from
sharing of contaminated injection equipments to safer injecting and from injecting to oral
substitution and subsequently drug use treatment (Detoxification and rehabilitation will be
provided through linkages with drug de-addiction centres). For safer sexual behaviour, condoms
need to be promoted. According to WHO the most effective response to HIV in the context of
IDUs consists of a combination of prevention, care, treatment and support within a harm
reduction framework.
The key components of an effective harm reduction package targeting drug users include:

community outreach, with a focus on peer approaches;

behaviour change communication, including risk reduction information;

access to clean needles and syringes as well as their safe disposal;

drug dependence treatment, particularly OST;

HIV testing and counselling (voluntary and confidential, and provider initiated);

prevention of sexual transmission through interventions such as providing condoms, and STI
prevention and treatment;

HIV/AIDS care and treatment, including ART;

primary health care, including hepatitis B vaccination, vein and abscess/ulcer care, overdose
management; and

supportive policy and legislative environment.
Care and support:
Needs are being defined as per client needs, service availability and national and provincial AIDS
programs. Considerations need to be made on the four ‘A’s:

Availability of - drug treatment, treatment of opportunistic infections (TB, PCP, oral thrush
etc) and HIV and AIDS care and support, policies and programs at the national level.
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Accessibility to these services, and
188
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Acceptability of the services and programs to the clients (‘provision of services to people
where they are as they are’).

Anti Retroviral Treatment (ART) should be accessed through ART centres due to the
complicated medical nature of the the drugs including side-effects and adherence.
Adherence is critical for ARVs and so it is recommended that this only start during the
TIER 2 of Harm Reduction unless sufficient adherence is established during TIER 1. The
same would apply for TB DOTS and also for ART for Hep B & C).
Key issues to be addressed:

Linkage with Directly Observed Treatment, Shortcourse (DOTS), opportunistic infection
(OI), STI, Voluntary Confidential Counselling and Testing,(VCCT), ART, Prevention of
Parent to Child Transmission (PPTCT and other care and support services

Linkages with detoxification and rehabilitation centres.

Facilitate participation of Female IDUs for treatment (both inpatient and out patient
department (OPD).

Projects working with IDUs to facilitate information sharing, networking, referrals, maintain
follow-ups to ensure a continuum of care.

Linkages with psychiatric services – Government and NGOs.

Home based care and support of IDU PLHIV and referral to the networks of PLHIV.

Incorporate GIPA (Greater Involvement of People Living with AIDS) into all projects at all
levels.

Setting up of self help groups (SHGs) addressing income generation activities.

Short stay/Half-way Homes and Night Shelters for availing safe environment

Advocacy and Enabling environment

Advocacy with government ministries and agencies like Department of Social Welfare,
Police Administration, Paramilitary, Army, Human Rights Commission at all levels to
create enabling environment

Develop a Provincial and National level coordination committee involving stakeholders,
public health experts, and corporate, state government departments and other agencies
operating in drug related areas

Operational research (focusing female IDUs, BCC strategies).

Care and support strategy:

As there are significant overlaps with drug treatment and care and support for injecting
drug users and so this manual has integrated all aspects of HIV related treatment into the
different tiers.
189
The Harm Reduction implementation strategy can be broken up into 3 Tiers:
Tier 1
Outreach, Needle and Syringe Exchange Programmes,
Behaviour Change Communication (BCC)
Condom social marketing and free distribution,
Primary Health Care (STI treatment, abscess management)
Tier 2
Oral substitution therapy (OST)
Linkages with TB screening and Treatment (DOT program)
Linkages with Anti Retroviral Treatment (ART)
SHGs
Nutrition
Tier 3
Referrals to detox and de-addiction/residential care services
Linkages with other services, and
Advocacy for an enabling environment
Essential Coverage, Services and Linkages to be considered
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Ideal Target setting:

NSEP to at least 60% of the population

Free condoms (to 100% of population)
 OST to at least 20% of the population
Services:

Community outreach – through peer educators supported by outreach workers
engaging in communication with IDUs to reduce risk/vulnerability, and provide
requisite risk reduction materials

Primary health care -- abscess and wound management, STI treatment

DIC

HIV prevention counseling
Linkages and referral services (provided by others/government systems)
 Drug treatment (de-addiction and rehabilitation)

TB referrals to DOTS

VCTC linkages

ART linkages

Vocational training/income generation efforts

Social and legal support services

Access to other government department services (e.g., nutrition supplements)
191
Session 5.3 Care and Support Tier 1
Time: 1:30 h
Key point
 Understand outreach services, needle and syringe exchange
programmes, BCC and primary health care as part of a
comprehensive care and support package for IDUs
Trainer Instructions:
Group discussions regarding Tier 1- familiarize yourself
with the subject carefully
Notes for the facilitator:
Community Outreach
Key objective: Reaching the injecting drug users and their regular sexual partners with the prime
objective of preventing the transmission of HIV and other blood borne viruses by reducing needle
sharing and sexual risk behaviours.
Who should be involved?
 Peer educators who are a mixture of both current injectors and ex- injectors
 The key to peer education’s influence on behaviour change is peers talking among
themselves and consequently determining a course of action to resolve the problem.
 Gender balance in the staff (women peer outreach workers to reach out to women injecting
drug users and female regular sexual partners of male injecting drug users)
 One peer outreach worker (ORW) to reach out to 40 IDUs and/or sex partners of IDUs
 One ORW for every 200 IDUs / sex partners.
 Working in pairs is advantageous
Operating principles
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Identify locations with high drug use/drug dealing
Find and contact “out of treatment” drug users, especially IDU
Actively engage and involve peers
Provide relevant, credible education
Increase access to needles and syringes and condoms
Increase access to drug treatment services including opioid substitution
Increase access to counselling, VCCTC, sexual health and other social, legal and health
services
Be confidential and non-judgmental
The minimum amount of information that outreach workers should try to get across during a
contact is:
 Discussion of risk behaviours
 Explanation of ways to reduce risk
 Giving written information and materials
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Offer of referral information
Repeat outreach contacts
Outreach sites
Drop in centres (DICs)
Mobile units
In primary health care facilities
Places where drug users congregate
Drug selling venues
Spaces near locations where other medical and social support services are located
Informed consent for clients
Operating hours
Outreach should happen at times when the at-risk populations are buying, selling and using
drugs.
Requirements for outreach workers
Outreach kit containing the following:
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IEC Materials
Needle 26" & 24"
Syringe 2ml & 5ml
Condom, containers
Dildo
Scissor
Betadine Ointment & Lotion
Spirit
Water
Sterilize Gauze
Bandage
Staff supervision
Supportive Supervision provides workers with the opportunity to actively review their work
practices and seek advice, structure and direction from a more experienced worker in a
supportive environment. The aim is to support and develop workers in this role.
Debriefing is a supportive process which offers staff an informal opportunity to express their
feelings, thoughts and reactions about an unpleasant, negative or difficult work experience to a
colleague or supervisor.
It should be immediate, informal and low key, and is an important component to prevent staff
burnout. Debriefing promotes teamwork and trust amongst team members. It also promotes skill
sharing and an opportunity to review work practice.
Needle Syringe Exchange Programmes (NSEP)
Objective: To facilitate safe injecting practices by providing clean injecting equipment and
ensuring safe disposal options for used equipment. In addition, education and information on
safer injecting practices to help prevent transmission of HIV and minimize the potential health
consequences of injecting is offered.
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Types of Needle Syringe Exchange Programmes
 Fixed site: specific place IDUs come to collect & dispose of injecting equipment
 Mobile services: use of van or bus often with regular route & stopping at several
locations
 Outreach workers travel the streets or other areas distributing clean injecting
equipment & collecting used equipment for safe disposal
Delivery options
 DICs operate NSEP
 NSEP through community outreach
 Needles and syringes can be delivered by peers to IDUs (secondary exchange).
 Satellite distribution of needles/syringes through secondary distributors (who have
undergone thorough training on NSEP and counselling)
Disposal of used needles and syringes
 Loose needles and syringes being returned to the NSEP should be placed by the
client directly into a needles and syringes disposal container
 Any returned needles and syringes must be disposed of in the sharps bins, even if the
client says they are new or unused
 The needles and syringes disposal containers should never be overfilled
 All needles and syringes disposal containers are to be stored at the DIC in a safe
place for transferring to an approved medical waste service
Training and technical assistance
Clients look to non-technical staff to corroborate information given by physicians and paramedical
staff. Further, patients expect the same accepting attitude from all staff members. Thus, all staff
members need training in both technical and cultural matters; training sessions, particularly to
assist clinicians in making appropriate treatment decisions are required. Written
educational/training materials for staff, such as national and regional treatment guidelines, should
be made available and frequently updated. Close collaboration and coordination are needed
between the primary care and the specialized HIV and AIDS care and treatment centre at the
District/Province level. Knowledgeable and sensitive health workers and others (peers) are
needed to support vulnerable people living with HIV and AIDS and to maintain harm-reduction
activities. These workers and peers require ongoing training. All staff members require
comprehensive training in various aspects relating to IDU. These include:
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Safer injecting and sex practices;
Vein care;
Medical conditions associated with injecting drug use
Medical conditions associated with HIV infection
Overdose management and prevention;
Managing drug dependence related issues;
Infection Control and Universal precautions.
Drop-in Centre (DIC)
Objective: To provide services through user-friendly centres/clinics geographically accessible to
the drug users
What is a Drop-in Centre?
194
A drop-in centre is a doorway for the drug user to a welcoming and caring environment. A DIC is
a hub for all services which an IDU can access as per his/her need and convenience. The centre
acts as the one point from where all prevention and treatment efforts are coordinated.
Drop-in-Centres are of two kinds:
1. Simple DICs for Tier 1 to provide services like outreach, NSEP, abscess management,
STI, BCC, networking and referrals.
2. DICs which qualify based on essential OST standards and can function as NSEP and
OST DICs.
What does a DIC provide?
 Outreach - outreach workers and peer educators will reach out to drug users in their
own environment on a daily basis to build a rapport and refer them back them to the
DIC.
 Needle Syringe Exchange Programme – IDUs can bring in their used needles and
exchange them for new and clean needles at the DIC or at fixed outlets.
 IEC Dissemination – continued education through Leaflets/pamphlets on STIs/HIV,
access to other IDUs and PEs for one-to-one contact.
 Psycho-social support - counsellor available to address issues on behavioural change,
positive prevention and VCCTC.
 Abscess management – treatment, diagnosis and management of abscesses by
nurse/doctors
 STI Treatment – syndromic treatment as per guidelines.
 Condom programming- promoting correct use of condom and access to free condoms
 VCCT, referral to public HIV and AIDS services
 Referral to VCCTC, DOTS.
How to set up a DIC?
Location
 The DICs should be located 5-10 minutes from injecting/peddling zones.
 The intervention should have information about the services available in the
surrounding areas an extensive social mapping of the intervention sites should be
done to identify the location of IDUs and community resources.
 The three ‘A’s, availability (menu of services under one roof), accessibility (in terms of
location and timings) and affordability (cost to reach) need to be kept in mind.
Infrastructural Set Up
 Sufficient space i.e. at least three to four rooms one large (for group meetings) and the
others for counselling, primary health care may be smaller.
 The centre should be properly ventilated, well-lit and clean.
 Running water/soap should be available
 Basic furniture
 At the Entrance/ registration counter (must haves):
 Table and chair
 One peer or ORW
 Registration book
 Accessible Box of condoms.
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 Needles & Syringes for exchange programme
 Bucket for used injecting paraphernalia.
Medical room
 Table and chair for nurse and doctor.
 Stool for patient to sit
 Stool for abscess management.
 Sterilizer
 Patient examination table
 Needle crusher
 Gloves
 PEP drugs.
 Cupboard for OST, STD drugs and other material
 Waste disposal container
Medical equipments
 Stethoscope
 BP apparatus - Sphygmomanometer
 Thermometer
 Torchlight
 Tongue depressor
 Weighing scales
 Kidney trays
 Disposable Gloves and Masks
 Hydrogen peroxide solution
 Savlon solution
 Solvent ether spirit, Povidone iodine solution, Freshly prepared Eusol,
Freshly prepared 1% Na
o Hypochlorite solution, Cheatles forceps in savlon solution, Drums with
sterile gauze, gamjee and bandages, Sterile packets of catgut, ethylon,
prolene, silk, etc., autoclaved linen, sticking plaster, 2% Xylocaine without
adrenaline, suture cutting scissors
 Post-exposure prophylaxis (PEP) drugs
 Storage Bins for hazardous waste
 Emergency lights
Risk reduction materials
 Condoms
 Needles and syringes
 Waste management/ Disposal
Staff required for DIC (Roles & Responsibilities Attached as Annexure I)
 Doctor – (General Physician) (Full time or Part time or on-call)
 Trained full time Counsellors for monitoring OST (norms)
 Nurse 1 – Full time
 Out Reach Worker (Full time)
 Peer Counsellor
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Staff Structure:
Programme Coordinator
Counsellor
Doctor Office Assistant Outreach worker Accountant
Health Attendant/Nurse
Peers
Desirable characteristics of the staff
 Ability to make the drug user feel welcome in the facility
 Ability to work as a team and actively participate/contribute to team meetings
 Capacity to establish rapport with the clients
 Allowing the patients time and freedom to reflect on their drug use and related health
concerns
 Ability to be open and non-judgmental to facilitate meaningful interaction with the
clients
 Respect for and empathy with clients
 Willingness to exchange information and ideas / thoughts
 Willingness to learn and enhance capacity to better manage clients
What else needs to be considered when setting up a DIC?
Rapid situation and response assessment
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Planning the assessment
Team formation and training
Participation of the community looking at Snowballing techniques
Fieldwork – collecting existing information; mapping the areas with high prevalence of
drug and injecting drug use; qualitative and quantitative data
Analysis of the assessment findings by the assessment team
Designing and developing an action plan based on the assessment findings
Developing a baseline instrument (the kiss principle is suggested here considering
that clients responding to this survey may be barely literate and/or in need of opiates).
Information considered essential in this baseline are;
Demographic information (if client is homeless note the nearest landmark)
Medical history including health seeking behaviour, mental health and ARVs
Drug use history and practices
Drug treatment history
Information on sexual and injecting risk behaviour
Family and social networks
197
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Forensic history
The instruments will require translations and field testing to see how the questions are
understood, and back translated to verify the accuracy of translation.
In select cases, where the DIC meets the strict criteria outlined in the OST guidelines, a
DIC can offer OST to its clients.
Primary Health Care
Many IDUs suffer severe adverse health consequences which often need immediate medical
attention as a result of their chaotic lifestyle, poverty, malnutrition, use of non-sterile injecting
equipment, toxic effects of drugs - impurities, contaminants etc. Common health consequences
include abscess, cellulitis, HIV and AIDS, Tuberculosis, Hepatitis B & C and direct hazards like
overdose. Access to mainstream health facilities is difficult or impossible often not appropriate for
IDUs due to the high level of stigma attached to their drug use behaviour. In common with
disadvantaged and disenfranchised populations everywhere, access to and utilization of
mainstream primary health care is poor for many people who use drugs.
Protection from HIV infection must be seen as one part of a holistic approach to health care
among IDUs. HIV prevention is not a meaningful concept to IDUs who cannot gain access to
basic health care, and who may have much more pressing health and social problems. Thus HIV
prevention approaches must be responsive to these other needs.
Primary health care caters to the immediate health care needs of drug users and include:
 Abscess/wound Management (antiseptic dressing, antibiotics, pain management)
 Tuberculosis diagnosis and treatment
 Overdose management
 STI testing and treatment
 Hepatitis B&C diagnosis and care
 Provision of medications to respond to general illnesses.
Voluntary Counselling and Testing VCT
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Pre-test counselling
Informed consent
Testing (in-house/referral to testing centre)
Post-test counselling
Steps in care and support for IDUs living with HIV:
First Tier Post test counselling needs strategic revision: Single event VS process.
Principles of counselling;
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Empathy
Appropriate listening time
Non judgmental
Confidentiality
Complete and accurate information
198
Medical referrals
Advanced medical and surgical care for OIs including
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TB
STIs
Liver Function Test (linked to Hep A/B & C)
Sexual and reproductive health (for female clients) and referral to VCTC, ART centre
and Psychiatric care (if needed, available and appropriate)
Universal Precautions
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Promoting a safe work environment
Implement, monitor and evaluate use of universal precautions.
Develop procedures for reporting and treating occupational exposure to HIV infection.
Attain and maintain appropriate staffing levels.
Provide protective equipment and materials.
Education in Infection Prevention
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Make all staff aware of established infection control policies.
Provide ongoing training to build skills in safe handling of equipment and materials.
Supervise and evaluate practices to remedy deficiencies.
Handling of equipment and materials
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Assess condition of protective equipment.
Safely dispose of waste materials.
Make available appropriate cleaning and disinfecting agents.
Decontaminate instruments and equipment.
Monitor skin integrity.
Recommended practices for Handling and Disposal of Sharps/Disposal containers:
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Soap and water hand-washing using friction under running water for at least 15
seconds.
Using alcohol-based hand rubs (or antimicrobial soap) and water for routine
decontamination
Safe work practices to reduce occupational risks
Assess high risk situations and areas
Develop safety standards and protocols
Institute measures to reduce occupational stress
Orient new staff to protocols
Provide ongoing staff education and supervision
Develop protocols for post-exposure prophylaxis
Behaviour Change Communication
Behaviour Change Communication is an interactive process with communities to develop tailored
messages and approaches using a variety of communication channels to develop positive
Behaviours, promote and sustain individual, community and societal behaviour change and
maintain appropriate Behaviours.
199
The behaviour change communication of drug users generally means attempting to persuade
drug injectors to change their behaviour or to practice safe injecting behaviour.
The behaviour change sought by interventions aim to prevent the transmission of HIV which can
occur through sharing needles and syringes and other injecting equipment or through sexual
transmission.
Counselling
It is the confidential dialogue between the client and a service provider. This involves the
assessment of risk behaviour, mental status, problem identification of the client and assisting
them to take informed decisions about their future course of action. This should be done in a
private place so that the information passed on to the counsellor should be kept confidential. The
counselling could be individual or family counselling. It takes 30 minutes to one hour to complete
one counselling. Repeat or follow up counselling is important to maintain their behaviour.
Mass Campaign
As the mass media is the main source of general information on HIV and AIDS for many drug
users, NGOs can use mass media as a strong instrument for providing information to the targeted
audience. Regular events at all the hot spots can be organized to create awareness among the
general population and targeted audience.
Condom Promotion
Steps of condom social marketing:
 Condom stock
 Supply to DICs
 Counselling and hand to hand distribution
 Distribution of outlets
 Cost recovery
 Inventory control
Session 5.4 Care and Support Tier 2
Time: 1:30 h
Key point
 Understand Oral Substitution Therapy and its importance in a
comprehensive care and support approach
 Understand necessity for linkages with TB and ARV centres,
support groups
Trainer Instructions:
Group discussions regarding Tier 2- familiarize yourself
with the subject carefully
Notes for the facilitator:
200
Opioid Substitution Treatment
Key objective: To improve the quality of the life of the injecting drug user by stabilising him and to
transit him from injecting mode of administration to non-injecting thus preventing HIV and other
blood borne viruses.
Operating principles
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Provide drug use treatment
Improve quality of life
Reduce criminality associated with illicit drug use
Enhance functioning and social relationships
Qualifying criteria and procedures for OST clinics
Oral substitution can enhance the adherence to ARVs for IDUs with adequate support being
provided to them. Therefore OST is important in providing comprehensive treatment, care and
support to IDUs.
WHO, UNODC and others have committed to scaling up access to antiretroviral therapy (ART)
and have confirmed that people who inject drugs should have equitable and universal access to
HIV and AIDS prevention, care and treatment.4
Studies5 show that some clinicians may be reluctant to prescribe ART to HIV infected people who
inject drugs, due to the common belief that such people have lower levels of adherence which, in
turn, may lead to elevated rates of antiretroviral (ARV) resistance.
However, studies show that resistance to ARVs is similar among people who inject drugs and
those who do not. Where comprehensive HIV care has been provided to people who inject drugs
in an accessible and non-judgemental way, high proportions of patients have been attracted to
and retained in effective treatment. Combining HIV and AIDS care with substance dependence
treatment services (including harm reduction, detoxification and opioid substitution therapy [OST])
and psychosocial services has been particularly successful. In addition to the general principles
governing the care and treatment of people living with HIV (PLHIV), the following specific
principles should be applied to people who inject drugs:
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HIV
Given appropriate support, former and current users of injection drugs can adhere to and
have equal success on ART.
Current or past drug use should not be a criterion for deciding on who should receive
ART.
4
HIV/AIDS Care and Treatment for People Who Inject Drugs in Asia and the Pacific - An Essential Practice Guide,
UNODC, WHO
5
Wood E et al. Rates of antiretroviral resistance among HIV-infected patients with and without a history of injection
drug use. AIDS, 2005,19:1189–1195.
Clarke S et al. Directly observed antiretroviral therapy for injection users with HIV infection. AIDS Reader, 2003,
12:312–316.
Mesquita F. Brazil: giving IDUs access to HAART as a response to the HIV/AIDS epidemic. In: Open Society Institute.
Breaking down barriers. Lessons on providing HIV treatment to IDUs. New York, International Harm Reduction
Development (IHRD), Open Society Institute, 2004.
Sambamoorthi U et al. Drug abuse, methadone treatment and health services use among injection drug users with
AIDS. Drug and Alcohol Dependence, 2000, 60:77–89.
201
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Special attention should be paid to the particular needs of former and current users of
injection drugs, including those related to substance dependence, co-morbidities and
co-infections.
A public health policy that acknowledges and addresses the need to treat both substance
dependence and HIV improves patient wellbeing, reduces stigma and promotes delivery
of comprehensive, ethical medical care.
The most effective response consists of a combination of prevention, care,
treatment and support within a harm reduction framework.
Provision of quality OST for opioid-dependent people who inject drugs is an
important component of HIV and AIDS care and treatment, and is highly effective.
A supportive environment, upholding the human rights and dignity of people who
inject drugs and helping to expand and improve access to drug dependence
treatment, should be ensured.
Countries with HIV epidemics fuelled by IDU should respond immediately to the needs of
people who inject drugs with preventive and treatment services.
Policies and procedures
 Establish policies and procedures for opioid substitution treatment (outpatient delivery in
supervised settings – directly observed treatment)
 Adherence to provision of NDPS act, drugs & cosmetics Act and other laws of the land.
 Adherence to treatment guidelines/ protocols.
Staff requirements:
 One medical doctor (MBBS) or Internist/ psychiatrist, one nurse, one peer counsellor,
ORW, support staff
 Staff education and training
DIC/Clinic Requirements for delivering OST:
 Backup coverage for the absence or leave of the medical doctor / core team
 Assurance of the privacy and confidentiality of addiction treatment information
 Space for Drug dispensing, clinical interview counselling & psychosocial therapy
 Record keeping- clinical records, medication etc
 Drug harm reduction counselling, Relapse prevention, VCTC & HIV Counselling; condom
promotion, IEC
 Counselling on treatment criteria and contract building
 Other requirements:
 Linkages with other drug treatment services, who will accept referrals for other forms of
treatment (e.g., abstinence oriented approaches; psycho-social interventions)
 Linkages with medical treatment facilities including HIV treatment and care
 Linkages with addiction and psychiatric treatment programs (e.g., detoxification centres,
psychiatric clinics)
 Listing of community referral resources, including specific self-help groups who would
welcome patients on opioid substitution.
Principles to be kept in mind when delivering OST
 Government sponsored buprenorphine clinics should be community based.
 Both the Government (supply of substitution medication, monitoring of regulatory
procedures) and the non-governmental organizations (NGOs) involved in community
based services for drug users should become partners in the delivery of treatment.
202
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The substitution programme should have linkages to the existing drug treatment /
rehabilitation services and should be part of a comprehensive and continuum of care for
the drug users.
In places with high potential for HIV transmission among injecting opiate users,
substitution treatment should become a key component of HIV prevention strategies for
injecting drug users. A broad range of dosages (if possible, range of substitution
substances – methadone and buprenorphine) should be offered in the clinics to match the
profile of the patients.
The proportion of problem opioid users to be covered by the substitution can be reviewed
periodically in different geographical locations
Points for care and support in TIER 2
 Self Help Groups (SHGs)
 Stabilization of the IDU population to adhere to ART and TB treatment; DICs can be
helpful but depends on the criteria of these provisions
 Registration (of the IDU site) with National TB Control Program or linkages with TB DOT
services
 Nutritional supplements
 Provision of medical and drug treatment/detox/de-addiction referrals at the DIC
Session 5.5 Care and Support Tier 3
Time: 1:30 h
Key point
 Understand the essential coverage, services and linkages
which need to be considered
Trainer Instructions:
Group discussions regarding Tier 3- familiarize yourself
with the subject carefully
Notes for the facilitator:
Referral Networks
Key objective: to ensure that injecting drug users and their sex partners have access to all the
existing medical, social support and legal services.
Linking services and addressing the multiple needs of drug users
A drug injector’s life is complex and complicated by multiple adverse social and health
consequences. They require many things – primary health care to shelter; drug abuse treatment
to food; HIV counselling to employment opportunities, HepB and Hep C and antiretroviral
treatment to recreational opportunities. Many agencies offer these services and coordination
between the various agencies ensures that the drug user is able to access these services without
203
being excluded. It is important to link the various agencies offering help and provide coordinated
services to the injecting drug users.
Accompanied Referrals:
It is important to provide referral services for the multiple problems faced by the drug users.
Accompanied referral in which the peer worker accompanies the drug user to the various services
improves the relationship and trust between the drug user and the peer worker.
Referral networks:
It is important to network with all the available services – medical, welfare and legal services that
are relevant for the drug user. By linking with various organizations, the drug users can be
provided appropriate treatment for the many problems.
After providing necessary information, outreach workers may offer printed referral information on
drug treatment, HIV testing, pre-and post-test counselling services, needle/syringe programs and
other medical and social services. The objective is to provide IDUs with a specific agency and
resource person for necessary information and support. Additionally, the information should
include hours of operation, eligibility requirements and an endorsement of the agency and the
services it offers.
DOTS services:
IDUs are highly vulnerable to HIV infection as well as Tuberculosis because of their low immunity
and unhealthy lifestyles. VCTC and even outreach works are opportunity for screening and
referral to DOTS services for susceptible or infected IDUs with tuberculosis.
Mobilizing communities for enabling environment to facilitate implementation of
interventions for IDUs
Working with community
Involving the community in designing the services for the injecting drug users and their sexual
partners is critical. Before implementing the harm reduction service, appropriate community
stakeholders should be selected. It is important to consult with local community leaders and
other health services in the area. When selecting the appropriate community stakeholders it is
important to consider: who are the supporters? Who are the opponents? Who are the decisionmakers? Who are undecided? Once these members have been selected, ask them to assist in
wider community consultation.
Awareness for the public
In order to reduce the stigma that is associated with injecting drug use and associated HIV,
awareness programmes for the general population will be necessary. They should be educated
about the potential benefits of harm reduction programmes targeting IDUs and their sex partners.
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Module 6 Care and support for male sex workers and men
having sex with men
Objective: To develop skills to provide efficient care and support to male
sex workers and men having sex with men
Total Time for module: 4 hours
Methods:
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Lectures
Case studies
Large and small group work
Discussions
Individual work
Visualization exercise
Content:
Session 6.1 Introduction
Session 6.2 Human sexuality and sexual health
Session 6.3 Identity vs. behaviour
Session 6.4 MSM issues and concerns
Session 6.5 Programmatic implications
Session 6.6 TG specific concerns
Session 6.7 Optional session Men on men sex
Session 6.1 Introduction
Time: 15 min
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15 min
45 min
45 min
1h
30 min
45 min
15 min
Key point
 Eliciting the participants’ basic reactions to a scenario which
involves an MSM’s reaction to a rectal STI diagnosis
Trainer Instructions:
Presentation 6.1, visualization exercise
Guided Visualisation
The following exercise is a suggested approach for eliciting the participants’ basic
reactions to a scenario which involves an MSM’s reaction to a rectal STI diagnosis.
Please keep in mind the following:
 Tailor the exercise to work best with your style as a facilitator.
 Tailor the exercise to best suit the needs of the group.
 Use language that is directive yet respectful and inviting.
 For instance: “I’d like to invite you to make yourselves comfortable” is preferable to
“Sit comfortably.”
 Always remind the audience that participation in this and similar exercises are
voluntary. Exercising their right to not participate will not affect their ultimate
“passing” of the course.
 You may choose to play quiet, appropriate music.
 You may choose to dim the lights in the room, if feasible.
Visualisation Instructions – trainer to participants:
 Please make yourself comfortable in your seat.
 Please allow your eyes to close, if you wish.
 Please take a few deep breaths.
 As your mind quiets, bring into view the clinic or place where you work.
 Please picture a typical, busy day.
 Notice what you are doing as you arrive at the clinic and proceed through your
day.
 What are the various tasks you engage in throughout the day?
 What are your various states of energy throughout the day:
o Tired?
o Excited?
o Exhilarated?
o Energized?
o Sad?
o Exhausted?
 Now please imagine that you enter an exam space and there sits a young man.
 You ask him what is the trouble today and he has difficulty responding. He is
clearly embarrassed to talk about it.
 You begin the clinical examination and detect symptoms of rectal gonorrhoea.
 You ask him how long this has persisted and he says that it has been several
days. He states that he has pain “deeper in there”.
 You complete the exam and tell him that he may have gonorrhoea in his rectum
and anus. That it is serious if not treated but that a few days of antibiotics should
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clear it up. You suggest that he became infected through sexual activity and
advise future caution.
He becomes quite distressed and then, appearing puzzled he, expresses concern
that you are suggesting he has had sex with men. “I am not like that,” he tries to
explain. “Perhaps I got this from a toilet seat.” He appears distrustful of you.
He gathers his things and prepares to leave, without treatment.
Take a moment to notice your emotions in this situation:
o How do you feel?
o How does your body feel? Is there tension or anxiety? Adrenaline, fear?
o Is there awkward silence?
Before he reaches the curtain, you open your mouth to speak. What do you say?
Allow 10 seconds of silence to pass.
Please allow your eyes to open and return to this room and this time.
Please jot down your reactions and notes in a piece of paper.
Please do not discuss the exercise yet. We will do so later
Explain that the training team chose this emotionally charged moment as the
starting point for the training because working with MSM and Transgender is a
very new area and can be challenging
It’s important to keep track of our own feelings as we approach this work
It’s okay to feel uncertain or confused about what the scenario brought up in you.
That is why we are all here… to find our way together through shared information
and mutual support.
We want to keep that reality front and centre and use it as the organising
Ask a couple of people to share their thoughts and feelings on the exercise.
Participant Guidelines
 Explain to participants that the guidelines will help create a safe, productive
learning environment and maximise cooperation and teamwork.
 Use the slide to present the participant guidelines.
Session 6.2 Human sexuality and sexual health
Time: 45 min
Key point
 Definitions of sexual health
 Difference between gender and sex
Trainer Instructions:
Presentation 6.2, discussion: worksheet 6.1
Human Sexuality
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WHO Definition
Explain and discuss each part of the definition:
 The goal is to familiarize participants with the definition. Each part is listed on a slide in
order to emphasize each segment.
 Explain that you will present the WHO definition in parts.
o Present the parts of the definition with limited discussion. There will be more time
for discussion later in the session, as well as throughout the remainder of the
training.
o Emphasize that the group will examine several parts of the definition in great detail
during the remainder of the training.
o While this is not the only definition that exists for sexuality, it provides a way for
participants to begin thinking about sexuality, beyond an abstract definition and
beyond the basic definition of the sex act itself.
o A larger goal of the training is for all participants to clarify their own ideas,
attitudes, and values about human sexuality and to develop their own working
definition of sexuality (one they can use in their daily work with clients).
 Explain that a full course or lifetime study of human sexuality cannot be replaced with an
afternoon’s workshop content. Encourage them to incorporate their personal and
professional experiences into their working definition of sexuality.
 Explain to participants that the WHO definition offers insight into the multiple dimensions
of human sexuality and the social and cultural forces, which shape and change how it is
viewed and defined.
Central Aspect
 Facilitator asks participants to consider what is meant by “central aspect of being human.”
 Point out that the definition states “throughout life”; implying sexuality exists throughout all
stages of life.
 Often, there is bias that older people are not sexual. This is not true.
Encompasses
 Sex is not just what we do but who we are.
 Sexuality encompasses our physical needs as well as reproductive needs.
 Participants should consider to what degree is same-gender sex stigmatized or looked
down upon because it does not have reproduction as its intent? They should also
consider that many MSM and transgender people might already have or desire to have
children.
 To what degree is sex that is just for pleasure frowned upon?
 What are norms that prohibit women from enjoying sex for pleasure but permit men to do
so?
Experienced and Expressed
 Note that sexuality is expressed in many more ways than just behaviour or practices.
 It isn’t always experienced or expressed: For instance, those who choose to live a celibate
lifestyle or abstain from sex for other reasons still have sexuality as part of who they are.
Interaction of Factors
 Many of these factors are the domains of a holistic or “whole person” definition of health or
wellness.
Sexual Health
Ask the participants to think about what sexual health means to them personally.
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Defining Sexual Health Group Activity
 What does sexual health mean to you?
o Write their responses on flipchart paper.
o Include the following examples as needed:
 Healthy ways of having sex
 Healthy functioning of sexual organs
 Not having sexually transmitted infections (STIs)
 Knowledge and practice of safer sex
 Knowledge of sexual anatomy and function
 Experiencing sexual pleasure
 Mental peace about sex and sexuality
 Positive attitude about sexuality
WHO Definition One
 “Sexual health is the integration of the following aspects of sexual being
o Somatic (body)
o Emotional (feelings, attitudes, thoughts, beliefs)
o Intellectual (working knowledge)
o Social (family, friends, church, culture, neighbourhood, etc.)
 In ways that are
o Positively enriching
o Enhance personality, communication, and love
 Fundamental to this concept are
o The right to sexual information
o The right to pleasure.” (WHO, 1974)
 Discussion
o Direct participants to Worksheet 2.1, Sexual Health Discussion.
o Ask participants to spend a few minutes answering the questions on their own
o Using the previous WHO definition and the questions on
WHO Definition Two, Sexual Health Is…
 A capacity to enjoy and control sexual and reproductive behaviour in accordance with a
social and personal ethic
 Freedom from
o Fear, shame, guilt, false beliefs, and other psychological factors inhibiting sexual
response and impairing sexual relationships
o Organic disorders, diseases, and deficiencies that interfere with sexual and
reproductive functions (WHO, 1975)
Biological Sex
 Biological sex is determined by the seventh week of gestation. Males develop male
genitalia, females develop female genitalia. Additionally, females eventually develop the
capacity to menstruate, become pregnant, give birth, and lactate.
 Disorders of sexual differentiation:
o Some people are born with genitalia that are in-between male and female, or they
may look male but actually have female genitalia due to hormonal problems. Their
appearance may even change after puberty.
o Hermaphroditism:
 Historically been used to describe people with ambiguous genitalia or
biological sex.
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o
 Intersexual is the broader, more preferred term.
 Often a synonym for transsexual.
Intersex:
 Intersex person or unisexual.
 Born with genitalia and/or secondary sex characteristics determined as
neither exclusively male or female or combined features of the male and
female sexes.
 “Ambiguous genitalia” sometimes used.
Gender Roles
 Every culture treats boys and girls differently, and expects different behaviour of men and
women.
 Thus, the difference we observe between men and women is only partly due to their
biological sex; much of it is due to cultural expectations and learned experience.
 Cultural practices often seek to exaggerate the difference between men and women.
 For example, men may be encouraged not to wear their hair long or even to not be seen
snacking on food in public.
 This constellation of factors associated with each sex is called gender.
 Women are generally expected to behave in a feminine way and men in a masculine way.
Sexual Health Discussion (Worksheet 1)
1. Where does a person’s sexuality reside? Is it only in one part of the body? What kinds
of factors lead people to engage in the kinds of sex that they do?
 Sexuality is complex despite how we as health providers may reduce it to a single body
part or act.
 Importance of the brain / mind in sex.
 Explore the sociocultural context of sexuality, broadly.
2. What is meant by the “right” to sexual information? The right to pleasure?
 It is unusual to think of people having a right to pleasure.
 Are certain groups ‘deprived’ the right to pleasure – or discouraged from exercising it; e.g.,
women, MSM, teens
3. Is this really a right? When viewed as a right, how does our thinking change?
 That sex is only for reproduction and pleasure is a by-product – mostly enjoyed by men.
 Or that sexual information is too difficult to disseminate or it is not our role to do so (vs.
parents, church, elders…)
Session 6.3 Identity vs. behaviour
Time: 45 min
Key point
 Understand difference between self-identification and sexual
behaviour
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Trainer Instructions:
Presentation 6.3, four corners game, discussion worksheet
6.2 A and 6.2 B
Are, Think, Do
 The sexuality of an individual is unique and distinct from the sexuality of every other
person in the world.
 BUT it also ties us to a community of other individuals – those around us and in society.
 WHO definition is complex – keep an open mind.
 The WHO definition also leaves out or simplifies certain characteristics that may be more
important in different parts of the world. Try to think about how components in the
definition apply to your own culture and locale.
 For example, in Asian cultures, one’s family and kinship network holds a central
importance in defining one’s sexuality and sexual norms, although this may be changing
with economic development. These influences have been simplified under “social factors”.
Driven By Choice
 Some people (even some here) believe that it IS an uncontrollable drive.
 This is said to be true for men, in particular.
 What are the health implications for such a belief?
o Men are not responsible for their behaviour.
o Clinicians cannot trust patients to make healthy decisions on their own behalf.
o Behaviour cannot be changed very much if at all.
Two Main Outcomes/Individual/Social
 Sexual Behaviour aims at two main outcomes
o Physical pleasure
o Psychological intimacy
 These two outcomes are
o Powerful
o Reinforce each other
o Fulfilling social expectations
 Sexual Behaviour, in essence, is a pursuit of “joy”
 It is individually based upon
o Biological Sex
o Gender identity
o Sexual orientation
o Reproductive desires
 Sexual behaviour is socially based upon
o Gender role
o Erotic experiences
o Filial and familial responsibilities
o Relationships
o Responds to peer expectations
Four Corners Game: “Sex: Nature or Nurture?”
 The following exercise may be too personal for some participants and can be difficult.
o Keep this in mind when facilitating the course. As with all activities in this course, if
it does not seem appropriate, either exclude the activity or replace it with
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something more appropriate.
Goal:
o The goal of “Four Corners” is to help participants examine their underlying
assumptions about the origin of sexual behaviours and practices.
Objectives: By the end of “Four Corners”, participants will:
o Articulate their views on several practices – that they are learned or in-born.
o Challenge and affirm each others’ beliefs and attitudes.
o Appreciate the complexity of views on such “simple” phenomena as overt sexual
behaviour – let alone constructions of identity.
Instructions:
1. Post the copies of the following 4 signs in 4 corners or distinct areas of the
training room. Signs include:
� In-born (nature)
� Learned (nurture)
� Both (nature and nurture)
� Not Sure
2. Ask participants to stand in the middle of the room.
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3. Below is a list of sexual behaviours/responses. Read the behaviours/responses
aloud, pausing after each one. As you read each sexual behaviour or sexual
response, ask participants to choose the corner that reflects whether they believe
the sexual behaviour or response is:
– In-born (nature/biological)
– Learned (nurture/environmental)
– Both
– Not Sure
For Example: “Let me read the first item. “Kissing” Is Kissing something we do from
instinct (in-born), is it something that is learned, is it both, or are you not sure? Please
choose a corner. “
Process questions to ask after participants have chosen a corner
Statements to use:
– Kissing
– Erections
– Blushing
– Male masturbation
– Female masturbation
– Touching and caressing
– Rubbing and pressing bodies together
– Enjoying another’s scent
– Hugging
– Vaginal intercourse
– Having a mistress or more than one sex partner
– Anal intercourse with opposite sex
– Anal intercourse with same sex
– Being attracted to same sex
– Transexualism
4. For each statement, ask for input from each corner.
 Why did you choose that corner?
 Ask, “That’s interesting, say more about your choice?”
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5. Encourage the ‘minority opinion’ – those that are standing alone or in a small group:
 How does it feel to be in a small group or alone in your position?
6. Normalize and validate those that are in the ‘not sure’ category:
 Being “Not Sure” is a totally valid choice.
 You may clarify your ideas by the time this training is complete. Others, in other corners,
may be less sure of their positions. Anything is possible!
7. Ask, occasionally, if participants would change their position if the sex were between two men.
 What about male-male sex changes how we view these?
 It may make those viewed as “inborn” shift to “learned”, demonstrating a tendency to view
being homosexual as a learned trait, not genetic or inborn.
8. Discussion:
 Ask the group to take their seats and discuss the experience.
 • Questions with facilitator talking points:
o What stood out for people during this exercise?
 Diversity of opinion, similar views.
 Strong points of view.
 Hot spots – point where folks got defensive or edgy.
o How does what we believe about the origin of sexual behaviours affect how we
view it?
 Blaming persons for “learned” behaviours vs. “biological”.
o What are the implications for how we treat patients who present with STIs related
to specific sexual behaviours, or who disclose their practice of these in the course
of a sexual history?
 Viewing those who “choose” behaviours as abnormal, sick, immoral, and to
blame.
 Viewing those as those “born with” behaviours as pitiable, as victims.
 Exercise conclusion:
o Thank participants for taking a risk during the exercise and being willing to express
and defend their views.
o Encourage them to make mental and written notes about their views, feelings, and
reactions.
o Assure them that the process was solely to help people clarify their views on these
important values-based choices, not to correct anyone’s view or change their
minds.
Why Men Have Sex with Men
 Ask the group why would a man have sex with another man
 Discuss their answers and the answers on the slide
 Emphasise that there may be multiple reasons for this behaviour and it can often overlap
Barriers to Accurate Estimates
 Male-to-male sexual behaviour:
o Common in Asia.
o It has not been systematically studied.
o Acceptance, prevalence, and lawful tolerance varies throughout Asia:
 Existence is officially denied by some Asian countries.
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May be criminally punished by incarceration for up to 10 years in some
countries.
Social Tolerance and legal recognition of same-sex behaviour are variable
among countries.
Prevalence/Language/Identifying
 Emphasise that much of the way a MSM is viewed by others or views himself depends on
his life circumstances, e.g., living in rural or urban areas, marital status, etc.
 Again, note that social class and geographic location dictate how a person behaves and is
viewed by others.
MSM Identity/Situational Role/Overview
 MSM themselves do not usually adopt an identity based on their sexual -role or behaviour
 Behavioural terms
o Fluid
o Can change rapidly
 MSM has become an identity that people in the community take on, preferring the term to
“gay”
 Men who have male-to-male sex may adopt a “situational role”
 Situations where men are more inclined to have male-to-male sex, such as:
o Work that takes men away from home
o Military
o Incarceration
o Adolescence
o Hotel boys
 Male-Male sex
o Is similar to male-female sex
• It is learned
• Not an “instinctive” or inborn drive
o Used to Express feelings and connections
• How do MSM have sex?
o No fixed roles (such as one plays man, one plays woman)
o Changes over time with partners, tastes, preferences, aging
o Only limits are imagination and cultural norms
Small Group Work/Group Discussion (Worksheet 2a and 2b)
1. Ask participants to divide into 4 smaller groups.
2. Direct participants to find Worksheets 2A and 2B in their Manuals:
 2A: Why Am I Sexually Attracted to Men?
 2B: Can You Cure Me of My Sexual Attraction to Men?
3.
Assign two groups Worksheet 2A and two groups Worksheet 2B
4. Each small group should select a participant who will record the discussion of the
small group and a participant who will report the small group results to the larger
group.
5. Ask each group to read over the worksheet it has been assigned, discuss the
notes provided on the worksheet and answer the questions that follow.
6. Allow 20 minutes for groups to discuss and answer the questions.
7. Reconvene the large group and ask each small group to share its answers to TWO
questions.
8. The questions from the worksheets are listed on the Slides and can be used
during the large group discussion.
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9.
Use the information on the worksheets to help the groups discuss the questions.
Session 6.4 MSM issues and concerns
Time: 1 hour
Key point
 Understand better MSM specific issues for more targeted
programming and providing better services to the clients
Trainer Instructions:
Presentation 6.4, exercise, discussion
MSM Issues and Concerns
Exercise: But Why?
What is it?
This activity involves creating a ‘but why?’ diagram – by drawing a problem relating to MSM in the
centre, repeating the question ‘but why?’ and drawing the answers in circles around the problem.
Why use it?
To explore the underlying causes of problems relating to MSM.
Facilitator’s notes
Be aware that this exercise can be complicated. Support the participants to use it by giving them
clear, step-by-step instructions and explaining how the end result shows the different ‘levels’ of
reasons for the main problem. It may help to put arrows on the lines that link the circles – with
them all pointing inwards to show how they contribute to the central problem.
Encourage the participants to allow plenty of space for this activity – so that the diagram can
spread out as much as is needed.
How to use it
1. Explain the purpose of the activity to participants.
2. Ask the group to identify four issues or problems relating to MSM in their community.
3. Divide the participants into four groups. Ask each group to choose a different one of the
issues to work on.
4. Ask each group to draw a ‘but why?’ diagram. Ask them to start by drawing or writing their
issue in a circle in the middle of a space on the floor, blackboard or sheet of flipchart
paper.
5. Ask each group to:
 Discuss ‘but why does this happen?’ Then write each of the immediate answers in
separate circles around the problem.
 Look at the first of the immediate answers and again discuss ‘but why does this
happen?’ Then write the answer in a new circle and join it to the first circle with a line.
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Repeat this a few times.
6. Ask each group to repeat the activity for each of the other immediate answers and to keep
asking ‘but why does this happen?’ until they can think of no more answers.
7. Bring all of the participants back together. Ask each group to share their diagram. Support
the participants to develop a list of the most common reasons for problems relating to
MSM and to discuss why they are the most common.
Broadening the Context
HIV and AIDS does not exist in a vacuum – it exists in a larger psychological and social context.
 We will now address issues within the health domain which affect MSM and TG.
 An over-arching theme is the way in which stigmatisation of homosexual behaviour
generates psychological and social effects which in turn impact health.
 Facilitate a discussion on the “Broader Context” using the question on the Slide.
Mental Health
 Depression
 Anxiety
 Suicide
Substance Abuse
 Alcoholism
 Stimulant abuse
o Cocaine
o Speed or methamphetamine
o Ecstasy
 Depressant abuse
o Tranquilizers
o Sedatives
 Benzodiazepines
 Barbiturates
Violence/Threat of Violence
 Domestic violence
o Within families toward MSM and TGs
o Between MSM or TGs and their partners who are in relationships together
 Rape
o Violence during sex
 Between strangers
 Between partners who know each other
 By heterosexual men as a form of violence against openly gay identified
MSM and TGs (e.g. in prison settings)
 Violence
o By heterosexual men as a form of homophobia against openly gay identified MSM
and TGs
o May be physical (beating) or verbal
Stigmatisation/What It Affects/Degrees of Threat
 Prejudice, discrimination, and violence pose risks to the mental health and well-being of
MSM and TGs.
o Association with a stigmatized group increases the risk for stress related to a
range of chronic daily hassles.
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o
o
 Being called names or made fun of and the need to always be on guard
 Discrimination causing loss of employment, home, or custody of children
 Violence
Discrimination and negative experiences in society can directly affect mental
health problems and emotional distress for MSM and TGs.
Societal and legal pressures affecting MSM and TGs
 Lack of legal rights and protection in medical situations and emergencies
such as lack of acknowledgment of couples’ relationships and inability to
access medical information may be associated with feelings of
 Helplessness, depression, and disruption of normative grief processes
Mental Health/Substance Abuse
 Prevention remains less common.
 Many studies document the association of substance use, especially the use of alcohol
and drugs, with STIs.
 At the population level, the introduction of new illicit substances into communities often
can drastically alter sexual behaviour in high-risk sexual networks, leading to an epidemic
of STIs.
 Other substances, including alcohol and club drugs, may affect an individual’s cognitive
and negotiating skills before and during sex, lowering the likelihood that protection against
STI transmission and pregnancy will be used.
Substance Abuse/Violence
 The widespread prejudice, discrimination, and violence to which MSM and TGs are often
subjected are a major mental health concern.
 Sexual prejudice and sexual orientation discrimination are major stress-related issues.
Violence Approaches
 Awareness can affect what approaches are used.
o If a health care worker is unaware that domestic violence occurs nearly as
frequently among MSM and TGs as in the general population it is unlikely that they
will ask the right questions, provide outreach, or recommend appropriate referrals
to MSM and TG clients.
Legal Protections
 Across Asia, MSM and transgender people are significantly
 Marginalised
 Stigmatised
 They have no legal protections under anti-discrimination or human rights laws
Session 6.5 Programmatic implications
Time: 30 min
Key point
 What to focus on with MSM and TG care and support services
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Trainer Instructions:
Presentation 6.5, self assessment worksheet 6.3
SELF-ASSESSMENT: SEXUAL HEALTH AND MY PROGRAMMES
Direct participants to Worksheet 6.3: Sexual Health and My Programmes, and ask them to
make notes under each question. Allow some time for reflection and writing. Invite participants
to voluntarily share any points they noted with the group.
1. Do I believe that sexual pleasure is a “right” for people? What do other providers with whom I
have worked think?
If yes? Why?
If no, why?
2. How comfortable are my professional peers in discussing aspects of sexual pleasure with
clients? How comfortable am I? What makes us particularly uncomfortable?
3. Can you recall a case where there was clear interaction between any two or more of the
following:
 somatic
 emotional
 intellectual
 social
If so, describe it briefly.
4. How do I view my role as a promoter or helper in the client’s life regarding his/her personality,
communication, love?
5. What are some examples of each of the following in my own life (that could affect my work)?
Sexually-related:
Fears
Shame
Guilt
False beliefs
Implications for Programmes: Creating the Sexual-Health Friendly Space
Tell participants that they will be discussing how to re-orient the clinic for MSM/TG persons. But
for now, ask them how they can integrate this definition of sexual health into their own
environments?
Present the following slides. Invite questions and comments on the issues related to negative
consequences, stigma, discrimination, and cues that communicate friendliness and acceptance.
Implications for the Clinic/Negative Consequences/Stigma and discrimination
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Why are many MSM and TG persons threatened by clinical environments?
o Afraid that the staff will break confidentiality.
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to co-workers
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to friends
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to family
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to government
o Ashamed of their behaviour
o Afraid staff will confront them
o Afraid staff will try to convert them
We’ve learned so much about how to improve clinical outcomes.
o If MSM and TG patients don’t feel comfortable in our programmes, what happens?
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How does this affect their health?
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How does this affect our effectiveness?
What are some ways to involve the MSM and TG community?
o Seek advice and input of any social and advocacy groups.
o Ask clients there now to get involved.
o Other?
Session 6.6 TG specific concerns
Time: 45 min
Key point
 Understand TG and their specific needs and issues
Trainer Instructions:
Presentation 6.6, discussion worksheet 6.4 and 6.5, case
study
Categorising
 Gender matters
o People often first see “male” or “female”
 The first difference that they notice.
 If they can’t make this basic classification of a person that they meet, they are
uncomfortable or threatened.
 Gender dictates so much in society.
o Traditions, culture, roles, work, pay, etc.
 Labelling Activity
o Refer participants to the Worksheet 4.
o Ask participants to fill in examples for each category for both males and females.
o Allow 10 minutes for participants to finish.
o After the worksheet are instructions for a large group discussion.
 Discussion
o After the 10 minutes, regroup for a large group discussion.
o Facilitate a discussion using the following:
 The answers that the participants came up with on the worksheet
 Question: Why is it important to be able to label a person?
Transgender Terminology/Transsexual/Transvestite/Cross-Dresser
 Transgender is sometimes difficult to define. It is a term which might be described as
“UNDER CONSTRUCTION.”
219






Most often, transgender people do identify as either MALE or FEMALE.
Their gender may not match with their SEX AT BIRTH – i.e. born as male but identify as
female (MTF), or born as female and identify as male (FTM).
As the medical and psycho-social fields work more with transgender issues, the
discussion terms emerge and change.
Classification helps with study and academic research.
o It is not useful for labelling real people, per se.
o The term “transgender” is an example of this.
Classifications have changed with the development of new theories and practices.
When labels fail, people are stigmatized as “sick”, “disordered”, “abnormal”.
Tolerance/Transgender Identity
 Gender identity disorder
o A condition with which a person who has been assigned one gender (usually at
birth on the basis of their sex, but compare intersexual), but identifies as belonging
to another gender, or does not conform with the gender role their respective
society prescribes to them.
 Fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (Text Revision)
(DSM-IV-TR)2 is drawn on internationally
o Although its application to Asian cultures and countries has not been fully tested.
o Its usefulness as been questioned within the American Psychiatric Association,
which creates the DSM-IV
 If there IS a disorder, it is a disorder of social discomfort for those AROUND the
transgender person, and not the TG person.
Hijra Identity
Again, note that social class and geographic location dictate how a person behaves and is viewed
by others.
Prevalence
 Prevalence of Transgender Identity
– No clear estimates
Transgender Challenges
 Transition experience can be difficult for individuals who do not yet look convincing in the
desired gender, without hormones, electrolysis and cosmetic surgery.
 Moving to the preferred gender in a workplace is the most challenging part of the change,
and some transgender people choose to live their preferred gender everywhere except
the workplace.
MTF and FTM Definitions
 Emphasise that the remainder of this training focuses on MTF (Male to Female)
transgender persons because of greater prevalence in Asia and risk for HIV
 Note that FTM (Female to Male) persons also carry risk for STIs and HIV
Psychological Counselling and Support
 The standards of care acknowledge these difficulties by allowing psychotherapy as an
alternative to the real-life experience.
 Clearly, the real-life experience is more applicable to most Asian contexts, especially
given the general lack of psychiatry or psychological services in much of Asia for the
foreseeable future.
220
Role of Counselling
 Not intended to change or cure the transgender identity
 Usual goal is a long-term stable life style with realistic chances for success in
relationships, education, work, and gender identity expression
 Gender distress often intensifies relationships, work, and educational dilemmas
 Identify resiliency factors in helping TG person transition with minimal psychological
distress
Addressing TG Persons
 Address those dressed as women as ‘she’
 Similarly address as ‘he’ those dressed as men
 Ask the person what they prefer if you are not sure
 Acknowledge your confusion about how to address the person – enrol their help
– TG persons appreciate the effort and consideration
– Such requests build trust and rapport
Talking to TG Persons
 This sounds simple, and it usually is.
 If someone you have always known as a man suddenly presents as “she,” or if someone
who wears women’s clothes still identifies as a man, it can get complicated.
 If you are telling a story about a cross-dresser who presented as male at the time the
story’s events took place, but presents as female now, the best approach is to use the
pronoun “he” or “she” appropriate to the time you are talking about.
CASE STUDY





Refer participants to Worksheet 5.
Ask participants to address the questions silently in writing.
Allow time to work on the questions.
Discuss the questions as a large group.
If needed, after group questions, probe with the following questions if they were not
already addressed in the discussion:
o How do you address the issue of obtaining hormones?
o What about her injection practice?
o And safer sex – condom use. How do you educate her to these issues?
Optional session 6.7 Men on men sex
Time: 15 min
Key point
 Understand what men can do with each other when having
sex and how to reduce the risk of HIV transmission
221
Trainer Instructions:
Presentation men on men sex
Notes for the facilitator:
The following is an even, more sensitive area- you can adapt to your context and
eventually take out too controversial slides.
The main point is to understand what men do with each other and which behaviours are at risk for
HIV, which not.
Male-Male sex is similar to male-female sex. Also men express feelings and connections towards
each other.
There are no fixed roles (such as one plays man, one plays woman). It can change over time with
partners, tastes, preferences, aging. The only limits are imagination and cultural norms.
Behaviours include kissing, oral sex, anal sex, mutual masturbation.
If you feel comfortable you can further elaborate on details regarding the anatomy of the anus,
how penile-anal penetration works, what kind of lubricants are used best and how all of these
practices can be performed in away to reduce the risk for HIV infection.
222
Module 7 Care and support for female sex workers
Objective: To develop skills to provide efficient care and support to female
sex workers
Total Time for module: 3:20 hours
Methods:




Discussion
Presentation
Activities
Exercise
Content:
Session 7.1 Understand sex work
Session 7.2 Providing treatment care and prevention
Session 7.3 a What do I think?
Session 7.3 b Strategies, solutions and attempts
Session 7.4 Optional Session Safe sex
Handout:


Understanding Sex Work by Cheryl Overs
Activity 7.2 Treatment handout
223
45 min
1:30 h
45 min
20 min
20 min
Session 7.1 Understanding Sex Work
Time: 45 min
Key point
 Thinking about the sex worker and the sex venue we are
focusing on only a part of the context.
 Leading to gaps in our understanding and to missed
opportunities to develop strategies
Trainer Instructions:
Read Understanding Sex Work and prepare activity 7.1
In this section we identify what we mean by commercial sex or prostitution. Who
is involved? What happens? Why?





The diversity of people involved in the sex industry
The importance of the role played by clients and “gatekeepers”
The stereotypes and truths about sex workers lives
The variety of settings in which commercial sex takes place
Environmental and psychological factors that drive unprotected commercial sex and other risk
taking by sex workers and clients
Activity 7.1: Everyone draws an image of a place, thing or people they associate with sex work
on an A4 paper. Put them together into a wall mural and discuss.
Typically people will have drawn many images of women and brothels and far less of clients,
police, children, pharmacies, festivals etc. These can be added as participants discuss the
collated picture.
The key message is that by thinking about commercial sex in the context of the various
stakeholders and affected people, venues, policies etc we can identify helpful strategies and entry
points and strategise to reduce barriers.
Session 7.2 Providing Treatment, Care and Prevention
Time: 1: 30 h
Key point

Stigma and discrimination against sex workers mean that they face
similar difficulties as others as well as some additional ones in
testing and in accessing and adhering to HIV treatment
224
Trainer Instructions:
Presentation 7.1 and activity 7.2
In this session we will look at the overall issues that affect sex worker access to
HIV care and treatment.











When to test, how to test, why to test
Obstacles to accessing treatment
Obstacles to accessing care
Adherence issues for sex workers
Stigma and discrimination
What do HIV positive sex workers need to know about staying healthy
What do HIV positive sex workers need to know to avoid transmitting HIV
What do HIV negative sex workers need to know to avoid contracting HIV
STI, reproductive and primary health care
Counselling and support services
Sex workers role and GIPA
Powerpoint presentation 7.1
This presentation should be an overview of some of the strategies that have worked in other
settings that illustrates best practice principles such as participation, non stigmatizing IEC,
friendly SRH services, access to commodities and rights based economic and social
development programs.
Stigma has many practical results for sex workers. Their human rights are violated by law
enforcement; service providers are often rude and do not respect confidentiality and public policy
treats them as vectors of disease rather than human beings with a right to health. Exclusion from
spiritual life (funerals in particular) is also frequently encountered.
HIV testing has always been a difficult issue for sex workers.
There is a persuasive idea that because women sell sex as a response to poverty they can be
stopped by providing economic alternatives. However there is no evidence of this working to
reduce commercial sex across the board. Economic programmes for sex workers are best where
they are targeted, (for example to older women and HIV + women); when they respect human
rights; are led by sex workers. They should aim to expand the woman’s choices and economic
power, not to rehabilitate her from sex work.
The interlinked barriers to accessing ARV/OI treatment and adhering that apply differently in
different places. It is worth thinking about which of them apply to sex workers and non sex
workers in your area. Warning: The role of poverty and lack of availability of medicines and
services should not be overestimated. Experience among sex workers in Canada where there are
free specialist services and outreach workers tasked to help HIV + sex workers shows severe
access problems.
Treatment has an important role in prevention. But what is HIV prevention for sex workers? It is
not enough to tell women who sell sex to use condoms. Messages must go to clients as well.
Prevention should also be aimed at positive sex workers. See Positive Prevention publication in
addition.
Sex worker involvement helps care and prevention services, but involvement looks different in
each country and culture.
Activity 7.2: In small groups read the treatment handout and use a highlighter and post-it notes
to mark one copy to respond to the question it poses about the different or additional issues sex
225
workers might face in respect of HIV treatment and care. Transfer your answers to circles on a
flipchart.
The key message is that stigma and discrimination against sex workers mean that they face
similar difficulties as others as well as some additional ones in testing and in accessing and
adhering to HIV treatment.
Session 7.3a What do I think?
Time: 45 min
Key point

People providing services have an obligation to develop a set of
values that enables not hinders service delivery to sex workers
Trainer Instructions:
Activity 7.3
In this session we will look at our own attitudes and ideas about HIV and sex work.
Activity 7.3: Participants move to signs at each end of the room to indicate agreement/
disagreement with each statement. This can be either a quick exercise, almost like an icebreaker
or it can involve more discussion depending on the timing. The statements can be tailored to be
more or less challenging depending on the capacity of the group and its cohesion and collective
‘comfort zone’.


















People with HIV can lead a normal sex life without infecting others
Sex workers are normal people in unfortunate circumstances
Sex work is caused by poverty
Swiss women sell sex
Men from every profession pay for sex
Sex workers do not care very well for their children
Sex work is an occupation
Sex work is a sin
I have been a victim of stigma or discrimination
I have been a victim of racism
The government should stop a sex worker working when she tests positive to HIV.
HIV+ women can have healthy babies
I am comfortable with explicit information about sex for HIV prevention
ARVs should only be provided to sex workers who agree to stop selling sex
Most sex workers are trafficked
Every adult is responsible for his or her own sexual health
HIV + people should disclose their status to all sexual partners.
Everyone is entitled to their own views on sex work.
226

Health providers who cannot accept sex workers as human beings should excuse
themselves from providing services to sex workers.
The key message is that prostitution raises complex personal and social issues. As people
providing services we have an obligation to develop a set of values that enables not hinders
service delivery to sex workers.
Session 7.3b Strategies, Solutions and Attempts
Time: 30 min
Key point

Long term strategies protect future positive people while short term
ones are needed for those who are positive and in need on care
continuity now
Trainer Instructions:
Exercise and presentation 7.2
In this session we will try to identify some practical actions that can be taken to redress the
barriers to access.
Exercise: In small groups participants review the barriers they listed earlier. Write a strategy,
an action, a policy or an idea that might help redress each barrier. Write actions you can take on
one colour and those that others should take on another. In the feedback session we will further
separate the actions to long and short term strategies.
The key message is that there are things that can be done by us and by others, in the long and
in the short term. Long term strategies protect future positive people while short term ones are
needed for those who are positive and in need on care continuity now.
Resources: The charts from session 2 and two different colours of post-it notes.
As an example the outcomes from the last training are attached in presentation 7.2.
Optional Session 7.4 Safe Sex
Time: 20 min
Key point

Understand risks of HIV infection as related to various sex acts
227
Trainer Instructions:
Activity 7.4
Sex is not either safe or unsafe. There are degrees and sex workers need to know the
implications of all sex acts so they can chose which to do/refuse and learn to steer clients toward
the safer services.
Activity 7.4: Write the name of many different sex acts on a piece of paper or cloth. The list
should include sex of various kinds with/without condoms and with/without ejaculation.
(use either a pre-prepared list or have participants make the list depending on capacity)
The list could include (but can be longer or different) sex acts such as:

Anal sex with condom with ejaculation

Anal sex without condom without ejaculation

Vaginal sex with condom with /without ejaculation

Vaginal sex without condom without ejaculation

Oral sex without condom with ejaculation

Sex between the breasts without condom with ejaculation

Mutual masturbation without condom with ejaculation
A clothes line is marked with safe at one end and unsafe at the other and participants are asked
to arrange their sex acts along that line in order of risk. This can be done first for HIV risk and
participants can return to re-arrange the sex acts according to the risk they carry for STIs.
228
Module 8 Introduction to the National Strategic Framework for
HIV Treatment, Care & Support in Pakistan,
Objective: To familiarize the participants with the National Strategic
Framework for HIV Treatment, Care & Support in Pakistan developed by
the NACP and to share the treatment, care and support experience and
models in Pakistan
Total Time for module: 3 hours
Methods:


Lectures
Discussions
Content:
Session 8.1 Introduction
30 min
Session 8.2 Developing the National Strategic Framework for HIV Treatment, Care &
Support in Pakistan
1:15 h
Session 8.3 Three year experience of HIV treatment and care centres
45 min
Session 8.4 Challenges
15 min
Session 8.5 The way forward
15 min
Handout:
 National Strategic Framework for HIV Treatment, Care & Support in Pakistan,
2007, National AIDS Control Programme, Ministry of Health
 Presentation
Notes for the facilitator:
229
Session 8.1 Introduction
Time: 30 min
Key point

Understand why the development of a National Strategic
Framework became necessary and what was there before
Trainer Instructions:
Presentation 8 slides 1-10
Background
• Concentrated epidemic/low prevalence (targeted service placement)
• Access the High risk groups (IDUs, sex workers, migrant men) and their families
• Observe social-cultural sensitivity
• Ensure that treatment is linked with prevention programming
The Medical Treatment and Care Model in Pakistan
• Emphasis on curative versus preventive or primary healthcare delivery
• A major role is played by the private healthcare sector
• “Physician dominated” medical paradigm
• Disjointed delivery of medical care
• No concept of social support linkages
• Mostly self pay
• No real safety nets or health insurance
• Lack of understanding of quality of care
• Poor concept of patient confidentiality
• Harsh attitudes of health care workers
• Missing evidence based medical practices
• Lack of accountability and recourse for patients
Session 8.2 Developing the National Strategic Framework for HIV
Treatment, Care & Support in Pakistan
Time: 1:15h
Key point

Content of the Framework for HIV Treatment, Care and Support
Trainer Instructions:
Presentation 8 slides 10-16
230
National Strategic Framework for HIV Treatment, Care & Support in
Pakistan, 2007, National AIDS Control Programme, Ministry of Health
Rationale for Treatment, Care and Support Strategic Framework
Access to appropriate care and support of PLHIV is required because it is the fair and right thing
to do and is a basic human right. An effective strategy to provide treatment, care and support will
reduce stigmatization and allow PLHIV to be directly involved in strategic and operational aspects
of care. The broader societal benefits include reduced transmission of HIV, preservation of a
crucial work force, and fulfilment of social obligations.
All human beings have certain rights including that to adequate health. In developing countries,
these rights are often not respected or protected, in part due to lack of resources and/or because
customs to uphold such rights are not institutionalized. Development of a document that outlines
the ideal care and support model is the first step in accomplishing this eventual goal.
In the sub-Saharan Africa, where the epidemic preceded Pakistan by about 20 years, the
economic effect of unmanaged HIV is being felt in terms of devastation of economies and has
changed the demographic pattern of societies. In case of HIV the society has a major benefit to
reap for providing effective treatment for HIV infected individuals. Effective HIV treatment of
individuals is one of the best ways to reduce HIV transmission within a community. If done
effectively and linked with strong HIV prevention programs, this treatment will be cost effective
and will prevent much misery for the society as a whole.
Stigma remains a major concern and challenge with HIV. Two sources account for the prevalent
stigma. Most chronic and communicable diseases (for e.g. tuberculosis) have had tremendous
stigma attached to them. HIV is no exception. Secondly, many of the modes of transmission of
HIV are looked down upon in societies. By inference HIV positivity confers the status of a fallen
person in the society. Such stigma or discrimination prevents those with HIV (and their families)
from availing many of the facilities that they need. Only by recognizing a pervasive problem can
we begin to take action for its alleviation.
Finally experience elsewhere has shown that PLHIV and HIV activists are the best advocates for
PLHIV. HIV programs that include their input and involve them from inception have benefited
tremendously from fund raising to policy setting to managing individual patient care plans. This
experience must be utilized in the development of comprehensive care model strategy in
Pakistan.
Goal of the Treatment, Care and Support Strategic Framework: To maximize and
improve the quality of life of PLHIV and their families in Pakistan
Guiding Principles


PLHIV and their families will be the central link of all treatment, care and support
initiatives
Treatment, care and support services will be provided as close to peoples home
and community as possible
231



PLHIV will have access to a continuum of care services that includes medical care
(facility or community based), in-patient care as well as emotional, legal and
economic support.
PLHIV and their families will be treated with respect and their confidentiality
protected when they seek treatment, care and support.
Treatment, care and support services will have the flexibility to adapt with the
evolving HIV epidemic and strive towards improving their quality
Defining the Key Elements of the Framework
Care for HIV is a comprehensive package that involves many areas including:

VCT : Access to early and appropriate diagnosis of HIV status

Referral mechanisms and linkages to both social support and medical care services

Community and social support services (i.e. psychological support or counselling,
nutritional, vocational training, job opportunities etc)

Medical care services for managing HIV or AIDS related illnesses, antiretroviral
therapy, prevention and treatment of opportunistic infections including TB and
managing co-infections

Palliative or end of life care

Socioeconomic support to PLHIV, their families, orphans, and vulnerable children

Legal support to PLHIV and their families

Home based care including care for caregivers
From these comprehensive services the Continuum of Care can be distilled into four overlapping
and interrelated areas: 1) medical care and treatment, 2) psychological support, 3)
socioeconomic independence and 4) legal support.
The Medical care and treatment part is mainly conventional medicine where preventive and
curative medical services are provided to PLHIV by physicians trained in HIV management (and
other trained healthcare providers) in a hospital or clinic setting. This includes clinical
management of HIV, prevention and treatment of opportunistic infections, HAART delivery and
management, monitoring toxicities, side effects and taking appropriate actions for minimizing
development of drug resistance. In the continuum of care model this realm also includes forming
linkages with peripheral primary healthcare clinics or providers and ensuring that at every levels
of HIV care delivery a basic standard of quality is maintained and monitored rigorously.
Psychological support is recognized as a key component of HIV care. HIV is a life long chronic
disease and carries associated stigma and other social stressors i.e. job loss, social isolation.
Due to the associated “sexual transmission” of HIV and in part due to the numerous myths and
fears associated with the disease itself, most individuals with HIV undergo tremendous
psychological stress, usually on an ongoing basis. A comprehensive care model must address
these stressors and proactively assist the HIV positive person in finding appropriate coping
mechanisms.
232
Socioeconomic independence is a major goal in improving the quality of life for PLHIV. Since
many PLHIV acquire HIV due to factors interrelated to poverty and social marginalization, and
further stigmatization is likely to happen following HIV acquisition. For example, discontinuity of
services (as the individual moves around in search for livelihood), participation in high risk
activities (such as needle sharing or unprotected sexual encounters) or inability to care for him/
herself due to physical infirmity or disability, time constraints (as time may be spent in earning a
living) or non-affordability of various aspects of care (transport, tests, medicines etc). While many
services are currently being provided free of cost in Pakistan, the fact remains that not all
services needed by an individual can be provided free of cost. This part of the concept means
finding sustainable mechanisms to support PLHIV in achieving socioeconomic independence for
themselves and their families including rehabilitation back into mainstream of society. It is
important to note that this does not mean providing all such services for free, since when this is
attempted there is a real danger of causing dependency among those served and challenges of
long term sustainability as the national disease burden grows.
Legal services are important. Many of the activities that lead to acquisition of HIV (and by
inference harm reduction activities that address them – such as needle exchanges, safe sex
counselling or condom distribution for disease prevention) are illegal in Pakistan. Addressing the
social milieu and helping create an enabling environment for safer behaviours, providing legal
protection and recourse, and simply ensuring certain basic human rights is a fundamental area of
the continuum of care. It is imperative to link the conceptual framework in the continuum of care
model with the national HIV policy and legal framework to ensure a unified national approach in
containing the epidemic.
Developing the Continuum of Care in Pakistan
As mentioned some parts of HIV comprehensive care model exist piecemeal in Pakistan but
there are critical elements that must be built up and better coordinated for maximum impact.
Objectives
1. To reduce HIV related morbidity and mortality in PLHIV through promoting and monitoring
evidence based standards of treatment, care and support
2. To strengthen the role of VCT as a key prevention strategy and entry point into HIV
treatment, care and support services
3. To ensure that PLHIV and their families have access to high quality of continuum of care
with services located as close to their homes/communities as possible.
4. To build referral linkages and support networks between different aspects of treatment,
care and support
5. To work in partnership with medical/academic institutions to train healthcare workers who
are competent and compassionate
6. To foster a research environment with academic institutions that feeds into HIV
programming
7. To create a safe and enabling environment where PLHIV can lead their lives as “normal”
productive members of society
233
Partnership Model:
Continuum of Care
Provincial
Level
District
Level
MCH Services
And
PPTCT sites
Social Support
Services
Micro-credit
Economic
Opportunities
HIV Treatment
and
Care Center
Tertiary Care
Specialties
District
Hospital
(Primary
Clinic)
STI
Clinic
PLHIV
Home based
Care services
Social Support
Services
TB
Clinic
PLWHA
Organizations
The Actors
Traditionally the lead actors in any healthcare facility based model are the physicians. Moving
away from the traditional healthcare model in the continuum of care the role that non-medical
actors (counsellors, NGOs, outreach workers etc) play is critical. One way to shift the operational
paradigm towards the desired comprehensive approach is through active involvement of the nonmedical actors into the continuum of care. This will mean re-defining roles and responsibilities for
all partners in the continuum of care with the ultimate goal to improve overall health (including
emotional well being) of PLHIV.
Ideally, a successful continuum of care model will have shared decision making between the
physician, psychological care providers, community support services and the HIV positive
individual themselves. This Partnership model is a departure from the conventional paradigm
and will require time getting used to.
Some anticipated challenges with this model may be who defines roles and responsibilities, who
takes the key responsibility of the care being provided, and its feasibility in situations where
PLHIV are not ready or willing to take responsibility for their care, or in some cases where there is
234
no existing social support services. In the traditional care model the physician takes the
leadership role and patient passively follows. In this shared partnership model, the physician may
not be able to comprehend the necessities of care provided away from clinics/ hospitals and thus
may not be the most optimal leader. If an alternate person (community activist, support person
etc) takes leadership role, the physician may have problems functioning within this paradigm (we
have seen some of this already) or sharing the decision making process. On the other hand a non
medical provider may not have optimal knowledge to make good decisions about medical care.
Thus optimal functioning of the continuum of care will ultimately depend on quality communication
among all involved partners, training healthcare workers particularly physicians who have
flexibility to accept the changing paradigm, creating more informed PLHIV, and building social
support systems that complement medical care services.
Location of Care
For any real impact, the Care and Support strategy should place care, treatment and support
services where the greatest numbers of beneficiaries are located. At this stage in Pakistan, HIV is
seen mostly among the most at risk groups (MARG) living in urban locations and among deported
migrant men who are mainly from rural Northwest Frontier Province (NWFP), Northern areas,
Punjab and to a lesser extent from Karachi. Logically it makes sense and is most cost effective to
place care and treatment services in large urban centres and to provide referral links (through
NGOs) and transport mechanisms for residents of distant villages.
To this end detailed information on the size and location of PLHIV (particularly women and
children infected or affected) through future mapping exercises needs to be undertaken so that
services (healthcare facility or community based) can strategically placed. In concentrated
epidemics the priority should be focused care (i.e. placement of services) based on
national data.
Baseline Assumptions
Estimates about the epidemic
Currently there are an estimated 85,000 PLHIV in the country (UNAIDS 2007). Logically about
15%-20% (12750-17000 cases) of these should have AIDS. All PLHIV can benefit from access to
medical care and linkage with social support and preventive services as early as possible. Those
with AIDS would in addition require immediate HAART and more specialized medical attention.
Many PLHIV are not availing the existing HIV treatment and care services because they either do
not know of their HIV positive status (or do not wish to know), are not aware that these services
exist or because they are held back by discrimination or logistics. Currently all PLHIV known to
those working in different aspects of HIV (i.e. medical care providers, PLHIV NGOs etc) add up to
less than a 5000. These numbers are likely to change as stigma and discrimination decreases
through increased societal awareness of HIV, hope of HAART brings people forth, and functional
referral linkages are developed between healthcare facilities providing HIV care and their
community counterparts. Based on empiric evidence from the year when HAART first became
available in Pakistan (GoP Initiative November 2005), it was reasonable to expect that about
3000-4000 PLHIV were known to the HIV community by 2007 and that roughly half of these
would have AIDS, with an increasing proportion of new HIV infection being identified in women
and children. This was the baseline presumption of planning the national care and support
strategy.
Presence in various populations
235
Based on the 2006 surveillance data, the main groups involved are groups with high risk
behaviours i.e. IDUs in a number of cities, male sex workers, with increasing prevalence
observed in female sex workers and Hijras. Based on the Asian epidemic model, the epidemic is
expected to expand from IDUs into commercial sex workers before onward expansion into the
general population through clients of sex workers (Brown, Peerapatanapokin, Cohen). Accurate
modelling estimations of the transmission dynamics will need to be made now to chart out the
potential trajectory of the epidemic over the next 5-10 years. Major exceptions to this model are
the ongoing but truncated (i.e. HIV transmission from infected husbands to their spouses and
children with no onward transmission by the women to additional sex partners) mini-epidemics
among the migrant workers, their spouses and children. While no accurate estimates of
prevalence guide policy regarding this group, their large representation among the existing HIV
treatment and care centres and their large numbers (According the Bureau of Emigration there is
a flux of approximately 150,000 such workers in and out of Pakistan annually) present an
alarming situation.
Location of epidemic
It is also assumed that majority of those seeking care will be from large urban centres with the
exception of migrants.
Expected mode of spread of the epidemic
The expected mode of spread of the epidemic in Pakistan is likely to be primarily via a sexual
route followed by injecting drug use. The initial over representation of those infected via
contaminated blood likely reflected measurement biases and is consistent with the global
experience. Unsafe blood (and likely unsafe therapeutic injections) will remain a considerable
source of incident infections but the shear volume of sexual activity and sex work (HASP/NACP
2005) will make sexual transmission (heterosexual and MSM) the leading cause of HIV epidemic
expansion in Pakistan.
Roles and Responsibilities within the Continuum of Care
VCT: The Entry Point and Beyond
Key Issues
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How to increase early identification of HIV positive individuals
Identification of viable entry points into HIV care
Positioning of VCT services
Building linkages between VCT and treatment and care services
VCT is a key prevention and care strategy. However, in the current prevention, treatment and
care scenario VCT remains a significant gap and in many ways the major rate limiting step in
case finding. Stigma, discrimination, logistics and lack of awareness keep many PLHIV from
being identified in a timely manner and hence from the care they should receive.
Confidential VCT (VCT) can be used to overcome this problem. Ideally in concentrated epidemics
such services should be provided to groups with high risk behaviours through peer counsellors
(or other counsellors trained in special counselling techniques for groups with high risk
behaviours) knowledgeable of the unique issues faced by these sub-populations and within
confidential and comfortable settings that promote client trust and alleviate stigma.
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VCT for groups with high risk behaviours should focus on
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Promoting confidentiality and client privacy
Be integrated within service delivery program interventions for groups with high risk
behaviours as a key strategy in HIV prevention
Use peer counsellors and mobilizers for increased uptake and acceptance of VCT
Extend beyond passive “client initiated” VCT into regular and active outreach services for
increased counselling and testing of those most at risk
Follow national VCT guidelines and protocols geared towards groups with high risk
behaviours
Another VCT model currently being tested out are VCT centres established independently (NGO
operated or private) and those within HIV Treatment and Care centres. In these PLHIV should be
used as counsellors as they can draw upon their own personal experiences to provide advice and
counselling. This model has been widely used worldwide with great success.
A priority action is to put in place a strong referral network and linkage between VCT centres,
NGOs providing social support and established HIV Treatment and Care centres in all provinces.
Later on this can be replicated and extended to involve districts. These linkages should be
facilitated by formal arrangements between VCT providers and healthcare facilities. A successful
demonstration of this pilot model is emerging at the PIMS HIV Treatment and Care centre,
Islamabad where PLHIV NGOs (New Light AIDS Control Society, Award) work very closely with
the Pakistan Institute of Medical Sciences (PIMS) HIV centre and VCT centres.
For successful VCT several building blocks must be in place
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VCT must be close proximity to the target populations
There should be an acceptable basic level of infrastructure and services tailored towards
diverse client needs
Counsellors and VCT staff should be well trained and sensitive to the needs of their
clients
Counselling and testing (i.e. HIV rapid testing) should be offered in the same venue (and
preferably within the same day) to avoid client attrition and “loss to follow”
A clear testing strategy should be in place
Referral linkages with NGOs and healthcare facilities should be well defined, practically
oriented and geared towards facilitating the clients (whether HIV positive or negative) in
having a pleasant VCT experience
Establish a mechanism for regular assessments of counselling skills needed, available
mechanisms for training counsellors and barriers to implementation which can be used to
improve quality of services and monitor progress
Development of a Testing Strategy for VCT
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Consensus through knowledge building on use, reliability and benefits of HIV rapid testing
in VCT settings
Develop consensus on the testing strategy for diagnosis (Strategy III) based on the WHO
recommended 3 test algorithm for low prevalence countries
Streamline processes to confirm indeterminate or doubtful results
Availability of confirmatory testing at the provincial and at the national level
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Community participation remains essential to ensure sustainability. One way to do this is by
engaging community participation in all levels of the development process and promoting
ownership through ongoing dialogue.
Counselling should also include comprehensive pre and post-test counselling, and ongoing HIV
counselling for all stages of disease and treatment. While VCT is the entry point for PLHIV into
the continuum of care, counselling can also serve as an important tool in imparting necessary life
skills – as many of these individuals come from impoverished backgrounds with limited coping
skills, counselling them in life skills, job skills, condom negotiation etc are essential. These should
be incorporated within the comprehensive care model.
Counselling is also needed on an ongoing basis while receiving medical care. This includes
informing PLHIV on healthy life style choices, nutrition, safe sex, adherence and addressing
stigma. While some of this counselling is going to be done in HIV Treatment and Care Centres
the vast majority will need to take place within community or home settings by peer counsellors
and NGOs.
Finally VCT programs will have to grapple with establishing clear policies (in line with the national
HIV policy) regarding provision of counselling and testing to homeless children/youth, prisoners or
jail inmates, the mentally incompetent, and partner notification of HIV positive individuals;
balancing the rights of the individual, respecting confidentiality and addressing issues of informed
consent.
Indicators of Progress
 Number of people, counselled and tested for HIV
 Availability of national VCT guidelines addressing special needs of groups with high risk
behaviours
 Number of VCT centres following national VCT guidelines
 Number of peer counsellors trained in counselling and working as counsellors at 1 year
 Number of VCTs with developed referral protocols for treatment, care and support
services
Community Based Care Services
Key Issues
 Placement of services
 Identifying the responsible organizations for providing these services
 Methods of developing community based services in a coordinated and cost effective manner
Community based services should be able to identify positive people through increased access
and uptake of VCT, refer them to care, and be available for counselling at various stages of care.
In addition they must be able to provide social support (i.e. social support such as transportation
to care services, nutritional supplementation in needful households, interim funding for school
tuition etc) and possibly even be able to facilitate/help with employment or other livelihood issues.
The goals of social support services are to assist PLHIV and their families in achieving a good
quality of life, providing interim or short term assistance in becoming self-sufficient and capable of
“taking re-charge” of their lives. This will be easier in some situations and more problematic in
others. The common pitfall to avoid is fostering a culture of dependency in which
responsibility is not shared by PLHIV and charity becomes “a permanent right.”
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NGOs particularly those that are formed by or have large representation of PLHIV are ideally
placed to provide these services. PLHIV understand their own needs the best and are in the
best position to demand and provide them.
Since such organizations are not universally present there is a need to help develop them all over
the country, starting with the major cities. This will require some generic development issues of
formulating and running NGOs (personnel and financial management) and some skills that are
more specific for the purpose of PLHIV support. The HIV care and strategy must provide a
roadmap for program managers and HIV planners in identifying mechanisms for developing them.
Social Support
Key Issues
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Defining social support in this context
Sustainable means of delivering it
Potential organizations for this role
What are some pitfalls to avoid in the process
Social support includes counselling, emotional, nutrition, home based care, stigma reduction,
logistical and financial support.
Counselling is a broad category and includes VCT that is the portal for many PLHIV to access
HIV services but also counselling (usually long term or ongoing) for those who live with HIV or
AIDS and its attendant problems (stigma, discrimination, depression etc), life skills counselling,
employment counselling and treatment counselling. Counselling also means a permanent
provision to provide sustained or emergency psychological or emotional support to PLHIV. The
recipients of such support include families and friends of PLHIV as well.
Nutrition is poor in Pakistan particularly in the context that many PLHIV belong to the socially
marginalized to begin with. HIV or AIDS can further decompensate the nutritional status directly
and indirectly through loss of economic livelihood or concurrent mental illnesses. Good nutrition is
a major factor in slowing disease progression and improving treatment outcomes for PLHIV and
particularly those with AIDS.
Currently only a handful of NGOs are providing such services to PLHIV on a small scale. For any
meaningful impact a HIV and Nutrition program needs to be formally introduced at the national
level as a priority and scaled up through NGOs.
Community Home based care services are defined as any form of care given to ill people in
their homes. Such care includes psychosocial, physical, palliative, and spiritual activities. The
goal of home based care is to provide good quality and appropriate care to PLHIV and their
families that helps maintain their independence and the best possible quality of life.
To date the burden of home based care is being provided by family members and there have
been situations of abandonment of AIDS patients by family members. Community home-based
care (CHBC) programs are slowly evolving in Pakistan and need to respond to the stage of the
epidemic in setting their priorities. For example, in the existing set up (i.e. low numbers and
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geographic spread of AIDS cases) CHBC programs should aim to complement family and
community support systems and not waste resources in setting up vertical systems.
Reduction in Stigma and Discrimination PLHIV face stigma and discrimination in many
settings. This adversely affects all aspects of treatment, care and support. One of the most
effective ways to improve quality of life for PLHIV is through personalizing HIV and AIDS into a
“medical disease”, providing access to accurate information to eliminate fears and myths, and
creating “champions” or community leaders who can bring about positive change in society’s
perception of PLHIV. PLHIV organizations and NGOs should take a lead role in bringing forth
pertinent issues, advocacy, and assist policy makers in mitigation of stigma and discrimination at
national and local levels.
Logistics are critical and frequently adversely impact treatment and care resulting in poor health
outcomes. In the current situation many PLHIV travel far to avail HIV care services which are
being provided via HIV Treatment and Care centres in national and provincial capitals only. Often
this means overnight stays or similarly long and expensive travel. It is highly likely that once the
initial desperation of receiving HAART wears of and the clinical condition improves this tedious
requirement for travel will negatively impact their decision to fully and regularly avail the services
needed. The HIV care and support strategy must account for providing such logistical support.
This means funds or mechanism for travel and means for overnight accommodation when
needed. It is recognized that beyond direct payment for these services, proxy payments
(vouchers, lump sum payments to NGOs, contractors etc) must be explored.
Many PLHIV are socially underprivileged to start with. Their prevailing poverty is often a major
impediment for continuing good quality of care. This manifests with frequent movement between
cities (in search of livelihood), inability to direct their own care appropriately (job conflicts with
clinic timings or lack of a stable shelter which has been shown to be a major predictor of
treatment non-adherence) among many others. Effective HIV care will have to include means of
providing livelihood to PLHIV. This may be both employment (either within HIV care networks or
within the society at large), and support of self-employment/small entrepreneurships.
Care will have to taken to ensure that PLHIV also understand that some vocations may place
them in situations where they carry a risk of transmitting HIV to others and strategies to mitigate
such risks need to be addressed. NGOs and PLHIV activists will likely be best placed to address
these situations and either counsel the PLHIV for different jobs or to devise other risk reduction
options.
Many services critical for providing good quality HIV treatment and care are expensive. Due to
these and other aspects of HIV work, some PLHIV may develop a sense of entitlement that
others will do much for them and that they themselves are not responsible for caring for
themselves. This is being observed in many ways, from refusal of many PLHIV to adhere to their
own therapy unless others remind them to take medicines or show up for appointments to outright
demands for stipends to continue participating in their medical care. Good financial support will
have to devise ways to financially empower PLHIV without making them dependents.
It is important to emphasize that main financial support should come via employment or
facilitation in setting up small businesses for PLHIV or their families. As discussed above the
former may be via NGOs that facilitate access to job opportunities (i.e. job placements) or link
them up with others that do so. Vocational training programs and job placement services may be
considered in this regard. For the more entrepreneurial PLHIV, micro-credit, basic business
training and other mechanisms for start up support may be considered.
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Undoubtedly great thought needs to be given at this stage (before the epidemic expands) by HIV
policy makers and programmers on the direct relationship between HIV, health and the
importance of economic viability in of itself HIV prevention. In this regard we need to build
consensus at a national level on
 Identifying the sources which can be explored
 Systems development to promote empowerment
In addition both geographical coverage (such an NGO must be placed locally for a PLHIV to
benefit from them) and quality of services provided is important.
Sustainability of support could be at several levels namely personnel, financial, infrastructure.
While it makes sense to do these support services initially using PLHIV workers, in the long range
it may be useful to explore the induction of other motivated individuals among those working for
HIV and AIDS.
Financial resources generation at national or international donor levels through setting clear
national priorities and targets (i.e. National Strategic Framework) and involving a broader range of
stakeholders from civil society, to private philanthropy, private sector corporations with explicit
understanding that HIV is a societal issue and needs to be addressed as such. For much of the
latter the government is the conduit of funding as many of international donors seldom work
directly with NGOs or people on the ground. The government in addition has its own funding
mechanisms that it is using in harm reduction activities. This can also be used to support care
and support structures. Finally private philanthropy supports much of our civil society framework
but is yet to be of significance in the efforts against HIV. For future sustainability, it must be
tapped as a major source.
In conclusion the process of social support has started with a handful of NGOs although many
more are coming up. It remains now to develop formal systems that make social support a
fundamental and sustainable part of HIV care and support.
Indicators of Progress
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Number of NGOs providing care and support services to PLHIV and their families
Number of PLHIV organizations engaged in advocacy
Number of PLHIV availing micro-credit or other livelihood opportunities
Number of PLHIV reporting utilization of and satisfaction with home based services
Number of PLHIV assessed and assisted through nutritional counselling
Initiation of dialogue or consultations to ensure program sustainability at the national or
provincial level
HIV Management at the Primary Health Care level
Key Issues
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How to incorporate HIV management at the primary health care level
Identification and clear definition of services that should be available and/or provided
at the primary health care (PHC) level
Monitoring of quality of services
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In the longer term, it would be impossible to provide comprehensive HIV care via a few tertiary
centres. Medical care of PLHIV would have to be integrated into the mainstream medical system.
To an extent, the time and scope of this mainstreaming is dependent upon the pace that the
epidemic takes.
In this regards a “Hub and Spoke” model of care is proposed (Figure 2). In this model tertiary
care centres will continue to provide specialized HIV care such as management of advanced
disease, inpatient management, management of complicated opportunistic infections, 2nd line
HAART, and drug resistant virus care etc. Much of the primary care (particularly important as the
HIV population stabilizes and ages) and preventive (HIV and otherwise) services will have to be
provided in the community by primary care providers. In addition, administration and delivery of
1st line HAART and treatment of OIs can also be undertaken within selected centres at the PHC
level. The quantum and scope of what is to be taken care of in the primary care setting is likely to
be carried out in a phased manner and dependent upon the time course the epidemic takes in
Pakistan.
Management of Co-infections and HIV
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How to maximize the potential synergies between Hepatitis B and C and TB programs
or care points and HIV treatment, care and support services
Forming these synergies would serve as a portal of identifying those yet to be diagnosed (i.e.
potentially more at risk) with HIV and new diagnosis of co-infections among those with HIV.
Tuberculosis, Hepatitis B and Hepatitis C are common in Pakistan and are likely to be overrepresented among PLHIV.
Management of uncomplicated tuberculosis is fairly prescriptive and based on national guidelines
and international protocols. However, not many practitioners are aware that such guidelines exist.
Even fewer actually follow them with serious implications for the individual patients and at the
national level. Complicated tuberculosis must be managed by specialists of whom there are few
in the country. Hepatitis B and C treatment is even more specialized. Hepatitis B virus is
suppressed with the same antiretroviral drugs that are sometimes used for HIV treatment with
easy development of resistance and lack of therapeutic benefit if not monitored closely. Hepatitis
C management is more complex although recently the government of Pakistan has made a
commitment of providing this expensive treatment free of cost in many public sector hospitals
(Prime Minister’s Hepatitis Program).
There are many synergies that should be used for co-infections namely linking up with
specialized centres or primary care practioners that see these patients and training them on
recognition and referral for HIV cases (diagnosed or suspected). Furthermore, all these
mentioned are relatively long standing infections that can be managed alongside HIV therapy
(which is a prototype chronic/ lifelong therapy). Treatment of co-infections may be initiated as part
of the overall healthcare system but with provision of referral to HIV expert centres as needed for
HIV positive individuals. Other opportunistic infections would be similarly treated.
Indicators of Progress
 Number of public-private partnerships established and functional
 Number of private sector healthcare facilities offering HIV Treatment and Care services
 Number of PLHIV with co-infections receiving appropriate and timely care
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Number of PLHIV reporting improved quality of care and support services delivered
through NGOs
Number of PHC with presence of trained healthcare workers providing HIV management
Number of PLHIV receiving on-going care through PHCs
Number of linkages between tertiary care HIV Treatment and Care centres and
community based services
Role of People Living with HIV and AIDS (PLHIV)
Key Issues
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Advocacy
Identification and referral of HIV positive people
Counselling and emotional support
Promoting HIV literacy (including ART literacy)
The role of PLHIV is crucial and central to any effective HIV strategy for Pakistan. They are best
able to identify their own needs and serve as their own advocates. They bring a higher level of
empathy when part of care services whether community or medical facility based. In addition,
their participation in their own care allows them to own their lifelong treatment and enables them
to take proactive initiatives.
As mentioned, PLHIV in Pakistan are disproportionately distributed amongst IDUs, sex workers
and migrant men. A vast majority hail from educationally and socially under privileged
backgrounds with limited understanding of their disease and its implications. The ability and
capacity of different groups (and individuals) will vary but their involvement – either directly – or
via enabling organizations will ensure that strategy and action are directed to where they are
needed most. This role must include identification and referral of high risk individuals, counselling
(both of infected and at risk persons), emotional support, advocacy, delivery of care, treatment
literacy as well as HIV literacy.
PLHIV and PLHIV organizations must also be involved in policy and regular review of care and
support programs with the onus that they are all working towards a united goal -overall
improvement of HIV care and support systems in Pakistan.
Indicators of Progress
 Formation of new PLHIV organizations and networks
 Number of functioning PLHIV organizations in each province and at local levels
 Number of PLHIV trained on understanding their disease and ART literacy
Role of the Government
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The current role
Responsibilities that Government should undertake
Governments have important roles in health. They are often the only entity available that can
conduct certain activities that are not profitable for the private sector. Usually these fall under the
broader umbrella of public health, training and provision of safety nets for socially underprivileged
population groups. In HIV treatment and care this role has been supplemented with “big ticket”
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items such as provision of antiretroviral drugs and treatment monitoring testing (CD4 and viral
load counts).
It is encouraging to note that the GoP through the Ministry of Health has set up HIV Treatment
and Care centres in tertiary care public facilities, has procured ARVs and tests (via Global Fund
to Fight AIDS, Tuberculosis and Malaria (GFATM) grant and other funding) and conducted
training. It is imperative that this solid start is built upon systematically. For the foreseeable future
most new HIV Treatment and Care centres will be opened by the government. In doing so quality
standards that have been identified must be met at initiation, during follow up and continued
operations.
The government will also realize that there financial and logistic limitations to what it can do. HIV
therapy and its monitoring are expensive. The government must cultivate and maintain links with
international and national entities that can provide supportive funding and at times share the
financial burden. This is being done on international basis and must be continued and built upon.
Nationally there is little support for HIV from philanthropy. This is a promising arena and must be
explored.
In the communities there are many functions that NGOs and civil society perform well. These
include community support and oversight of care in centres. The government must work on
improving channels of communication so that these experiences are communicated to program
planners within the government.
In addition, sharing of information about problems and successes leads to overall improvement of
quality in the country. This sharing function is congruent with the existing HIV M&E framework of
the NACP and should be used to share the experiences of local NGOs with others located further
away.
Finally training of healthcare workers and non-medical staff is at the moment a government
function and is discussed further in the appropriate section below.
Indicators of Progress
 Number of HIV Treatment and Care centres established
 Uninterrupted supply of medicines and commodities in the established HIV care centres
 Number of Government-NGO partnerships
 Number of NGOs having access to and reporting satisfaction with information sharing by
the government
 Percentage utilization of funds set aside for treatment, care and support initiatives
 Development of quality standards for delivered services
Building Referral linkages and Role of NGOs
Key Issues
 How should NGOs contribute in HIV treatment, care and support services
 What are current bottlenecks and how can to address them
 Understanding and defining the crucial linkages
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We understand that optimal HIV care must go beyond the traditional clinic-hospital paradigm and
that it has many components that must be functional and communicating with each other in order
for the continuum of care to work.
At the centre of the model are PLHIV (Figure 1). This is a critical point since it emphasizes
that the whole system exists for PLHIV and without whom none of the other components
have any meaning. This paradigm also dictates that much if not all of the care and support in the
community should be provided through NGOs. In an ideal situation these NGOs would be either
PLHIV organizations or run by PLHIV.
NGOs must work together with PLHIV to ensure that the right services are placed in the right
locations at the right times; and once they are so placed they continue to function according
to acceptable standards. This can only be done when NGOs work closely with the end users of
these services in the planning, design and implementation phase.
Another mechanism that NGOs must ensure is that PLHIV (or their families) can go from one arc
of the system (i.e. a clinic or hospital to community or home and even within NGOs) without the
care being compromised. This is a major undertaking and is one of the weakest links of current
care and support delivery system.
Indicators of Progress
 Number of referrals made
 Number and type of referrals made to which services (legal, social, nutritional)
 Number of PLHIV that report satisfaction with the referral process (i.e. type of
experience)
 Number of referrals completed
 Outcome of the referrals
Training
Role of Medical Institutions/Academic Institutions
Understanding of the implications of the HIV epidemic by Pakistani medical and academic
institutions: Years of working with a lack of facilities to test for diseases (i.e. test and validate
medical diagnoses), busy practice schedules that don’t allow continuing education and lack of
facilities that foster lifelong learning for medical practitioners have led to a culture of medical
practice based on personal empiricism that has no means to validate medical evidence against
available evidence or even to have the means to gather, assess and distil such evidence. In this
milieu, many practitioners continue to manage patient based on first impressions with little
thought about validating their initial impressions. This leads to widespread over and under
diagnoses of certain diseases (for example, many similar conditions are inappropriately
diagnosed as tuberculosis and subtle presentation of tuberculosis are missed) and non diagnosis
of uncommon conditions. Since there is no training about processing (medical) evidence mutual
consultations between physicians are often based on personal empiricism often with little
common ground.
In this environment, HIV care will be challenging. Firstly because HIV clinical care is fairly
complicated, the disease can mimic many common conditions and there is a narrow margin for
errors. Patients are frequently too sick at the time of presentation, pushing decisions to be made
in haste with adherence errors very quickly leading to resistance. Secondly, the understanding of
the disease and its treatments is constantly changing rapidly. To be effective one has to stay
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abreast of modern developments. All of these require a major paradigm change for most
physicians in Pakistan.
However this change has already started with the training of some healthcare workers in HIV
care. With expansion of such training to newer graduates, the HIV care and support strategy
hopes to drive (in a limited way) a change in the medical practice paradigm to a more evidence
based approach. It needs to be emphasized though that even in developed countries this is a
newer approach that has become popularly accepted only in the past two decades.
Finally few physicians have a good understanding of public health implications of a disease much
less a disease like HIV with its extensive impact on society. Most fail to see why such attention
(and resources) is being put into controlling this disease (during early and somewhat non-visible
phases of the epidemic).
What should be their role? At the end of it all, HIV care remains care of a person with a
disease. Its diverse aspects notwithstanding, HIV care can serve as template for advocacy
among a highly respected group within the Pakistani communities: the doctors and other medical
practitioners.
Medical centres and facilities will only see more of HIV in their midst. As they do so they will have
to adapt. Many correlates of good medical practice such as infection control, client based
approach to patient encounters, evidence based practice of medicine will all be driven by this
interaction. Many facilities may be able to use this experience to become opinion leaders,
standard bearers and advocates of these good medical practices in their communities, influencing
both the community members (i.e. the clients of medical care) and other medical practitioners in
the community to adhere to these good practice standards.
The most critical role however is that of medical and ancillary support services (nursing, medical
and surgical technicians etc) colleges. They must step up to assume the role of leaders in
teaching not just HIV care (which should be part of the normal curricula in any case) but also of
the other correlates of good medical practice already mentioned. They must include in their
curricula aspects of infection control, evidence based practice and better understanding of
practical aspects of testing such as conduct and interpretation of tests. An additional role of
medical schools (that is mentioned in more detail below) is that of research which must be owned
and advanced at all teaching facilities and medical schools.
Who should be trained?
In order to improve the quality of care, the knowledge and skills of healthcare and non-medical
NGO staff/PLHIV needs to be strengthened at all levels. Given the low levels of understanding
(medical and non-medical) among healthcare workers and NGO staff a key priority of this
Strategy will be of trainings of:
Healthcare workers
 Physicians (Adult medicine, Obstetrics and Gynaecology, Paediatric, Dermatology and
Urology)
 Nurses
 Counsellors
 Paramedical staff
 Infection control personnel
Non-medical staff
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NGO staff
PLHIV activists
PLHIV
Strategies
 Work with provinces/districts to identify key personnel for training at designated medical
or training institutions
 Identify training institutions and systems to provide on-going trainings to avoid waste or
duplication of resources.
 Development of a standardized, evidence based curriculum and training modules
 Trainings for master trainers or key resource people
 Support trainings at different levels and assist individual centres in identification of
additional resources
 Monitor the quality of trainings through development of training checklists, and other
quality improvement tools.
 Develop a system of accreditation at the national level
 Develop mechanisms for broad dissemination and information sharing so that the
greatest number of people can be trained (i.e. videos, broadcast systems)
We propose that periodic assessments be carried out to assess existing situation in terms of
services needed in any given location (this will vary from city to city). According to findings from
the initial assessments (including what is currently known), a list of services that are needed be
drawn up and objective standards to measure their quality developed. Following this,
mechanisms ought to be developed that will provided targeted training to address gaps in specific
services delivery areas. In this regards the key role is to be expected from those NGOs and
individuals who have developed specific skills and will be willing train others in them. As these
skills are taught, curricula should be developed to help standardize their teaching over time and in
different locations.
Indicators of Progress
 Number of good quality training programs available at the national level and in provinces
 Number of people trained
 Number of trained people providing high quality treatment, care and support services
 Number of accredited services and training programs present
Financing of HIV care
Key Issues
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Mechanisms to sustain the current system of financing HIV treatment and care
Exploring other options for financing of HIV care
HIV care is expensive as both ARVs and monitoring tests (CD4 counts and Viral loads are
expensive) plus other related services all cost a lot of money. The world experience particularly in
developing countries of sharing these costs with generally non-affording PLHIV is not very
favourable; results show a drop out from treatment and care. At the moment the ARVs are being
provided by the government using a GFATM grant (that is due to run out in the next 2 years but
the government has committed to maintain ARV supply from its own budget), CD4 and VL are
being provided by another grant (Catholic Relief Services (CRS) and supplemented by
Government of Pakistan funding).
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The cost of HAART is between US $ 400-1000 (Rs 30,400-76,0006) per person annually (1st line
regimens) and can range between $2000- 4000/year ( Rs 152,000-304,000) for 2nd line regimens.
The additional cost of testing (baseline and treatment monitoring) adds another $ 400-600/year
(Rs 30,400-45,600). The budget for subsidizing such care totally free may be manageable at this
early stage of the epidemic, but it is sure to become more prohibitive for any single entity as the
epidemic expands. HIV program planners and policy makers need to initiate the discussions now
as to who and how these mounting costs will be borne and ongoing treatment and care programs
sustained. It is therefore logical to consider alternate funding sources. Tax payer money is always
an option along with income related cost-sharing mechanisms for PLHIV. Other alternates such
as national philanthropy must also be considered.
Indicators of Progress
 Number and proportion of PLHIV on GoP supported treatment and care programs
 Number or proportion of PLHIV receiving support from other partners
 Number of PLHIV paying out of pocket for treatment and care services
 Number of PLHIV dropping out of treatment and care services due to non-affordability
 Number of partners supporting the national treatment and care programs
 Percentage financial support by different partners to treatment programs
Monitoring and Evaluation (M&E)
M&E is the combination of ongoing assessment of processes (monitoring) with periodic
assessments (evaluation). In practice M&E is done by identifying mechanisms of verifying if an
objective condition was met (Means of Verification or MOV). Typically these MOVs are measured
to assess programs at 4 levels.
1. Inputs: These are the assets (funds, personnel, other assets) that go into a project or a
program.
2. Outputs: These are the specific immediate targets of the project (i.e. the number of
patients seen in the clinic or the number of tests done in a VCT centre).
3. Outcomes: This is a higher level measure and is slightly more complex. These are results
of interventions such as condom use increase after counselling, the number of patients
who are satisfied with the care they received in the past year etc.
4. Impact: This is the highest level measure and is the ultimate reflection of all activities that
are being done in a country, for example: HIV prevalence change, number of AIDS
patients that are still alive after receiving one or more year of ART.
The strategy will include a mechanism to measure its progress and success with indicators from
all these categories. The proposed indicators are
Indicators of Progress
 Number of facilities (clinical and social) providing care and support related activities
 Number of individuals accessing services
 Proportion of individuals on HAART
6
Assuming USD 1= PRs. 76
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


Proportion of individuals from groups with high risk behaviours who are accessing
services
Satisfaction level of PLHIV with services
Mortality and morbidity data
Session 8.3 HIV Treatment and Care Services
Time: 45 min
Key point

Understand risks of HIV infection as related to various sex acts
Trainer Instructions:
Presentation 8 Slides 17-21
Treatment Services:
Key Issues





Placement and location
The current treatment and care model “ Hub and Spoke” : strengths and limitations
Piloting innovative models of treatment and care
Monitoring the utilization and effectiveness of treatment and care services
Ensuring long term sustainability
Public Sector Facility Based Model
In view of limited capacity to clinically manage HIV, it is reasonable and practical to start with a
few HIV Treatment and Care centres. Placing these initial ones in tertiary care teaching public
sector facilities allows induction of GoP resources such as personnel, space, ARVs and
equipment into a nascent system with comparable ease. The government is usually able to draw
upon its extensive human resources to identify and make available those who can be trained in
HIV care. Public facilities also have the advantage of lower out of pocket costs to PLHIV
particularly for inpatient care. Also under the current environment many of the leading
multispeciality physicians in supporting fields (i.e. referral is required from time to time for HIV or
AIDS patients) are available in major tertiary care hospitals in most large cities. This placement of
HIV Treatment and Care centres also has a secondary benefit of endorsing government
ownership to HIV treatment and care, sensitizing a wide array of healthcare workers, and
advocacy among opinion leaders in the medical community.
These centres will deliver HIV treatment and care and also be crucial training grounds for
medical, nursing, and paramedical personnel. Major impediments to quality care in medical sector
(private or public) are lack of appropriate and relevant medical skills amongst staff and little
previous exposure to HIV or AIDS patients. These are compounded by inappropriate attitudes of
healthcare providers and lack of “client centered approach” in many health facilities. In order to
overcome these, the HIV care and strategy will have to address both provider trainings and set
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forth a system of monitoring that emphasizes the importance of and assesses quality of care
including attitudes and end client (i.e. exit interviews) satisfaction.
At the national level treatment services should also include




Development of clinical guidelines and protocols; defining clear 1st and 2nd line regimens,
side effects and toxicities, management of OIs, acute and chronic HIV care, and postexposure prophylaxis
Monitoring of HAART and treatment resistance patterns
Policy on HAART and mechanisms for long term sustainability
A reference laboratory for monitoring quality assurance and procedures
The Hub and Spoke Model of Treatment and
Care
Community support
services
Maternal-Child
services
VCT
NGOs/Service Delivery
programs
HIV
Care centers
For PLWHA &
Their Families
Home based
programs
Medical care
facilities
Drug treatment programs
Private facility model
Ample evidence supports the claim that a large proportion of the population gets delivery of
medical care in private sector facilities – thus this is another potential venue for placement of
treatment and care services for PLHIV. In addition, almost all the presently available expertise in
Infectious disease/ HIV medicine exists in the private sector (i.e. Pakistan has 14 trained
Infectious Disease physicians). Other aspects crucial to high quality of care (supply chain
management of medicines, pharmacy management, effective record keeping, provision of
privacy, patient-client centered service) are generally better developed in some of the private
facilities.
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There are however significant challenges in this, especially in the context of HIV care. Given the
present distribution of the disease in more socially disadvantaged groups, a large proportion of
people requiring treatment and care may not want to or be able to access these services (for
example, affordability issues). In addition, many healthcare providers and facilities themselves
may not find HIV treatment and care as an attractive domain when compared to other lucrative
specialty areas. Capacity limitation is another potential problem in the private sector. As in any
other area, any point of care providing high quality care will be immediately beset with high
demand and consequently limited capacity to deal with it.
Thus private health care facilities ought to form a complementary component of the overall care
and support strategy but would not be able to function alone in delivering care to large number of
PLHIV. In addition, successful pilot models within the private sector can be used to replicate
services within the public sector and expertise (whether clinical or administrative) ought to be
freely shared between public and private institutions in this context.
Treatment Services: Public Private Partnerships
It is estimated that 70% of curative healthcare delivery is via the private sector (Federal Bureau of
Statistics of Pakistan). The private sector was also the first to be involved in delivery of treatment
and care to PLHIVs due to presence of trained Infectious Disease physicians in these institutions.
Centres of excellence (to mirror the hub and spoke model in the public sector) would have to be
identified and supported. This may be somewhat easier at one level since a number of private
healthcare organizations have trained Infectious Disease physicians (although only in 3 major
cities). Networking with community and PLHIV organizations would equally important here as
well.
There remain numerous issues that need to addressed in detail before embarking on such
partnership ventures
i) Logistical issues
 What are the costs involved for infrastructure, human resource, other capital
etc
 How can these costs be divided or shared by the involved partners
 Defining the roles and responsibilities of partners
ii) Availability of expertise:
 Deciding whether to place services where expertise is available vs. investing
time/resources in building new expertise. The limitations and advantages of
each approach
 Calculating in financial terms the additional human resource requirements
 Defining time commitments
iii) Challenges and opportunities
 Of each model addressing the accessibility, acceptability in terms of service
utilization by PLHIV and costs involved in establishing services.
iv) Sustainability
 Who takes ownership for ensuring that services continue uninterrupted and are
not terminated at the end of a project/grant period particularly in view of
growing HIV disease burden
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Linkages between different levels of care and the HIV Treatment and Care centres
 Define the treatment and care services that will be available at each level of the health
system:
 Identify strategies for delivery of home based and community care by NGOs/CBOs or
district level management anticipating a growing demand for such services in the future
 Deliver Primary care through PHC and peripheral private practioners with some facilities
available for in-patient admission
 Formalize specialist referral and tertiary care at the HIV Treatment and Care centres (for
example, HAART provision, advanced diagnostic testing)
 Institutionalize training needs for different levels of healthcare providers at the provincial
level.
HIV clinical care is a dynamic field with new information constantly coming in and changing
management paradigms. Skills of HIV treatment and care centre personnel will be enhanced by
forming domestic and international linkages with experts.
Care-pathways/ algorithms in care provision have particular utility in centres with limited expertise
and should be used to improve quality. Integration with other medical, surgical and diagnostic
specialties within the facilities would be crucial as would be availability of social and financial
support systems network within these clinical settings. Both outward and inwards referral system
between care centres and community based clinics and between care centres would be essential
since single clinics/ centres are unlikely to be able to handle future caseloads. Some portions of
care will need to be done in conjunction with general or family practitioners located out in the
communities. These practioners in turn will need to be trained in basic management of HIV and
mechanisms for ensuring quality and accreditation of trainings will have to be developed at the
national/provincial levels.
Linkages with community based organizations – especially those made up of or involved with
PLHIVs and other groups with high risk behaviours would ensure better treatment compliance,
follow up as well as improved utilization of services that have been established. It is possible that
despite strengthened linkages the future country experience will show that for groups with high
risk behaviours (i.e. IDUs, sex workers) to effectively utilize HIV treatment and care services the
positioning of HIV Treatment and Care centres needs to be shifted within service delivery
programs. This experience if proven true will require broader training of healthcare workers who
will then be placed within HIV preventive interventions (i.e. really bringing home the concept of
HIV care at the doorstep).
Session 8.4 Challenges
Time: 15 min
Key point

Problems faced at various levels
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Trainer Instructions:
Presentation 8 slides 22-27
Healthcare system:
• Developing trainings for a whole cadre of healthcare workers
• Influencing attitudes “empathic approach” to patient care
• Putting in place systems/logistics of record keeping, appointments, ART delivery
• Ethical considerations, stigma & discrimination
HIV + people :
• Low levels of understanding and comprehension
• Unrealistic expectations
• Distrust of the public healthcare system
• Disclosure issues
• Re-entry into mainstream of society
NGOs (social support linkages):
• Limited social support provision in place
• Threatened “Turf battles”
• Lack of a coherent social support plan
• Unrealistic expectations
• Little “horizontal information sharing” between NGOs
Private Healthcare sector:
• Little involvement
• No financial incentives
• Hesitant about scaring “paying patients”
• Reluctant to work with Government
• No clear national strategy how to involve private sector
Session 8.5 The way forward
Time: 15 min
Key point

Opportinuties for the future
Trainer Instructions:
Presentation 8 slides 28-31
Next steps
• Sustainable overall vision and plan
• Train a multi-level workforce of trained healthcare workers
• Create informed “HIV+ clients and patients”
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•
•
•
Form/facilitate PLHIV organizations
Strengthen capacity and networks of NGOs
Provide Economic uplift opportunities
National level
• Develop a HIV policy and strategy that addresses the roles and responsibilities of
stakeholders
• Start the debate on sustainability of HIV treatment and care programs
• Critically assess and analyze strengths and weaknesses of HIV treatment and care
models within Pakistan and elsewhere
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Module 9 Mapping Pakistan Care and Support Referral
Network
Objective: To introduce to participants the NGOs with Service Delivery
Packages, Voluntary Counselling and Testing Centres (VCTs),
HIV Treatment Centres and the Associations of PLHIV in
Pakistan
Total Time for module: 3 hours
Methods:



Lectures
Activities
Discussions
Content:
Presentation and discussion
Activity 1
Activity 2
Activity 3
2h
20 min
20 min
20 min
Presentation
Refer also to Annex 2 Services in Pakistan
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Operational Framework for Treatment and Care
PLHIV & Their Familie
VCT
Social Support Services
(community based)
Prevention Programs
Transport, nutrition, legal,
economic etc
HRGs
Entry points
Bridge populations
General population
Elements of care and support
• Counselling
• Rehabilitation (for former IDUs)
• Vocational training
• Nutrition
• Micro-credit / skills building
• Financial support
• Home-based care
• Day care centres
• Zakat and bait-ul-maal
• Social networks
• Information / resource training
• STI
• RH/FP
• Primary Health Care centre
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Treatmen
Centers (fac
VC
AR
OI
man
Why strengthening care and support network
•
•
•
•
•
•
There is lack of capacity of health care providers to provide services and refer and
awareness
Present needs are not being met and #s are increasing, a huge range of services is
required
Identify and access HIV+ persons
Strong care and support network improves prevention
Lack of awareness from policy to grassroots (to family level)
Reduce stigma
Roles and Responsibilities of the Government
• Raising awareness
• Pass HIV law (special emphasis on anti discrimination)
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•
•
•
•
•
•
•
•
•
Policy
Financial (drugs for opportunistic infection) – funding for key organizations
Information dissemination / data collection (information should be more available)
HIV centre establishment
Training of health care staff, paramedics, nurses, docs etc.
Services: TB, FP, STI, RH, PPTCT, PHC
Education, social welfare
Advocate with key players – religious leaders
Referral networks (develop Public Private Partnerships)
Roles and Responsibilities of the NGOs and PLHIV
• Advocacy
• Building capacity for home based care
• Referral to education
• Counselling
• Rehabilitation
• Vocational training
• Nutrition
• Micro-credit / skills building
• Financial support
• Home-based care
• Social networks
• Information / resource training
• STI
• RH/FP
• PHC
Roles of the community and family
• Home-based Care
• Nutrition
• Financial Support (incl. transport)
Important key points
• NGOs are in the centre of the whole nexus
• Central government’s role should provide linking public and private institutions , STI
/FP/TB/PHC
• Linking NGOs – Need for HIV service directory to know who is currently doing what
• More diverse funding base for equity amongst NGOs (Government bias in selection)
• Need for transparency everywhere
Financial Issues
• Massive leakage from source to end recipient
• Zakat Bait-ul-maal not efficient but NGOs can try to facilitate individuals
• PLHIV Association to advocate / establish direct access to funding from sources
• Corporate sector should be involved.
• Govt needs to make commitment for active care and support
Steps in strengthening care and support network
• Map the continuum of care
• Developing Terms of reference for care and support with NGOs (avoid redundancy in
programming)
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•
•
•
•
•
Transparency in bidding and evaluation (credibility)
Capacity building of NGOs for C/S service delivery
Formal networks / collaboration Meetings - (best practices, lesson learnt w/in and between
districts and provinces)
Formal indicators – monitoring and evaluation
Monitoring role (and advocacy) at the provincial level by PLHIV Association
Activity 9.1
 What difficulties you come across in providing care and support to PLHIV?
 How do you handle these difficulties?
 What kinds of difficulties you are unable to handle? And why do you think that these
remain unhandled
Activity 9.2
Each of the groups will be required to present their findings with the rest of the participants. Notes
will be taken for main points for the brainstorming session.
Activity 9.3
Brainstorming session
Participants will be required to
 Bring their ideas to the fore regarding the handling strategies for the difficulties
encountered by them in providing care and support to their clients
 Reflect which ideas are practical enough to act as workable solutions.
Identified difficulties could be:
 Transportation and mobility of the PLHIV
 Limited resources and different services by different organizations (CoC concept is not
clear/agreed)
 Availability and accessibility of diagnostic (especially CD4 and viral load) services for the
PLHIV in remote areas especially by the poor and weak patients.
 Lack of coordination of organizations working for PLIHV among themselves and with other
service providers.
 Mistrust among organizations and dis-empowerment of the clients.
 Standards of services and monitoring and evaluation systems to be agreed upon at
national level. Every one ensures the meaningful participation of the clients in program
planning, implementation and evaluation.
Solutions could be:
 Social support and cash grant facility will be provided under next PC1.
 Guest houses and other accommodation facilities for PLHIV who need to visit the cities
where diagnostic/treatment services are available/accessible.
 All care and support providers work on attitude development e.g. transparency, empower
the PLHIV getting them involved and providing them detailed information, him reduce
stigma and discrimination within the service providers (to reduce misuse of resources)
 Booklet of information about services available at different organizations and giving details
about their rights.
 Networking and advocacy through PLHIV organizations/Association
 Training RBAS for the PLHIVs and duty bearers.
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