HBC Policy final June 2011

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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
NATIONAL
HOME BASED CARE POLICY
GUIDELINES FOR HIV/AIDS
AUGUST 2010
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
TABLE OF CONTENTS
1
INTRODUCTION………………………………………………………………6
1.1 BACKGROUND..…………………………………………………………..............6
1.2 HOME BASED CARE WITHIN THE NATIONAL HEALTH SYSTEM………………….....6
1.3 JUSTIFICATION…………………………………………………………………...7
1.4 PROCESS OF DEVELOPING DOCUMENT………………………………………....7
1.5 PURPOSE AND OBJECTIVES OF THE POLICY GUIDELINES………………………...7
2
RATIONALE OF HOME BASED CARE…………………………………...10
2.1 BENEFITS………………………………………………………………….....10
2.2
2.3
2.4
2.5
3
TARGET AUDIENCE……………………………………………………………….11
ELIGIBLITY CRITERIA FOR HBC……………………………………………......11
GUIDING PRINCIPLES FOR PROVISION OF HBC………………………….12
CHALLENGES TO IMPLEMENTATION……………………………………..12
MODELS FOR HOME BASED CARE SERVICES…………………..........13
3.1 FACILITY BASED HEALTH CARE OUTREACH MODEL…………………………...14
3.2 COMMUNITY BASED HOME CARE MODEL……………………………………..14
4 ROLES AND RESPONSIBILITIES OF THE DIFFERENT LEVEL OF
CARE……………………………………………………………………………......15
4.1 NATIONAL LEVEL…... ………………………………………………………..16
4.2 DISTRICT LEVEL…….. ………………………………………………………..16
4.3 FACILITY LEVEL……. ………………………………………………………..16
4.4 NON FACILITY BASED HBC PROVIDERS……... ………………………………..17
4.5 COMMUNITY VOLUNTEERS…………………………………………...............17
4.6 FAMILY CARE GIVERS…………………………………………………………......17
4.7
PLHA………………………………………………………………………………..17
5
HOME BASED CARE SERVICES FOR HIV/AIDS ... ……………………19
5.1 TECHINICAL HOME BASED CARE SERVICES... ………………………………..19
5.2 FACILITY LEVEL SERVICES…. ………………………………………………..20
5.3 COMMUNITY LEVEL SERVICES..………………………………………………20
5.4 HOUSEHOLD LEVEL SERVICES ..………………………………………………21
5.5 STRUCTURING HBC SERVICES AT THE DIFFERENT LEVELS… ………………..26
6
MEDICINES, SUPPLIES AND EQUIPMENTS FOR HBC……………….27
7
TRAINING…………………………………………………………………….27
7.1 REFERRAL PROCESS……………………………………………………………28
8
STEPS IN ESTABLISHING AND MAINTAINING HBC PROGRAMME
…..........................................................................................................................29
9
MONITORING AND EVALUATION ………………………………………31
9.1 WHAT IS MONITORED AND EVALUATED IN HOME BASED CARE ………………..31
9.2 LEVELS OF MONITORING AND EVALUATION ………………………………..31
9.3 HOW MONITORING AND EVALUATION ARE DONE IN HOME BASED CARE ………32
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
9.4
M&E FRAMEWORK FOR HOME BASED CARE PROGRAMME…… ………………..32
9.5 MINIMUM MONITORING AND EVALUATION REQUIREMENTS………... ………….32
9.6
CORE INDICATORS OF HBC PROGRAMMES………………………………………....32
10 LEGAL ISSUES IN COMMUNITY & HOME BASED CARE .. …………34
10.1 RIGHTS AND ACCESS TO AIDS INFORMATION AND PREVENTION…….. ..………34
10.2 RIGHTS OF CHILDREN INFECTED OR AFFECTED BY HIV/AIDS ………………..34
10.3 GENDER CONCERNS ………………………………………………………..34
10.4 STIGMA AND DISCRIMINATION ………………………………………………..35
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
ACRONYMS
ABCD
Abstinence, Being faithful, Condom promotion and Diagnostic HIV
testing
ACP
AIDS Control Programme
ART
Antiretroviral Therapy
ARVs
Antiretroviral drugs
CB DOTS
Community-Based Directly Observed Treatment Short course
CBO
Community Based Organisation/ Community groups
CME
Continuing Medical Education
CORP
Community Owned Resource Person
DHAC
District HIV/AIDS Committee
DHMT
District Health Management Team
FBO
Faith Based Organization
HBC
Home Based Care
HC
Health Centre
HCT
HIV Counselling and Testing
HSD:
Health Sub-district
IEC
Information Education and Communication
IMCI
Integrated management of Childhood illness
IST/ESA
East and Southern Africa
LMIS
Logistics Management Information System
M&E
Monitoring and Evaluation
MOH
Ministry of Health
NCC
National Council of Children
NGO
Non-Governmental Organization
OI
Opportunistic infections
ORS
Oral Rehydration Solution
OVC
Orphaned and vulnerable children
PDC
Parish Development Committee
PEP
Post Exposure Prophylaxis
PFP
Private for Profit
PLHA
People infected and affected by HIV/AIDS
PMTCT
Prevention of mother to child HIV transmission
PNFP
Private Not for Profit
PWP
Prevention with Positives
RTC
Routine HIV Testing and Counselling in clinical settings
SRH
Sexual and Reproductive Health
STI
Sexually Transmitted Infection
TASO
The AIDS Support Organisation
TB
Tuberculosis
TOT
Trainer of Trainer
UAC:
Uganda AIDS Commission
UBOS
Uganda Bureau of Statistics
UHSBS
Uganda HIV/AIDS Sero-Behavioural Survey
VCT
Voluntary Counselling and Testing
VHT
Village Health Team
WHO
World Health Organization
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
FOREWORD
Human Immunodeficiency Virus/Acquired Immune Deficiency Syndrome (HIV/ AIDS)
still remains one of the major public health problems in Uganda.
Ministry of Health now has a comprehensive continuum of care for people living with
HIV/AIDS that includes a lot of interventions that have been addressed such as
clinical services, nursing care, counselling, social support, palliative care and Home
Based Care. Ministry of Health regards Home Based Care as a visible mechanism
for delivering services because it has important benefits for everyone along the
continuum. To help sustain this initiative, Ministry of Health is adapting the Home
Based Care for people living with HIV/AIDS that will work through the village health
team structures at community level. The purpose of the policy guidelines is to ensure
harmonized and standardized service delivery. It also aims at strengthening
integration of Home Based Care into Uganda’s existing health care system.
These policy guidelines are intended for use in a diversity of geographical and
cultural settings. Although this document is intended to be as relevant as possible in
different settings, readers will find that their own cultural settings or circumstances
are unique. I am therefore appealing for flexibility and creativity while utilizing this
document as a set of guidelines for the development of community based
programmes which offer broad support to families in caring for people living with
HIV/AIDS at home.
The programmes which emerge from the use of these guidelines should be tailored
to the peculiar circumstances and needs of the communities which create them.
There are two basic models for Home Based Care services; community based home
care model and facility based health care outreach model. The programmes should
provide services to the individuals, families in the households and community.
All stakeholders both public and private are called upon to make use of the
guidelines in order to streamline provision of home based care services for HIV/
AIDS.
I hope that the use of these policy guidelines will go a long way towards contributing
to the overall health sector goal in Uganda.
Dr. Nathan Kenya-Mugisha
For: DIRECTOR GENERAL HEALTH SERVICES
MINISTRY OF HEALTH
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
ACKNOWLEDGEMENT
The National HIV/AIDS home care standards have been developed with the
collaboration and efforts of various stakeholders involved in delivery of HIV/AIDS
services in the health sector in Uganda. The tireless efforts of the following
institutions are acknowledged for their time, dedication and contributions: TASO,
Mildmay, Hospice Uganda, Nsambya Home Care, Uganda Red Cross, Mengo
Home Care, Kitovu Mobile, Kuluva Hospital, JCRC, Rubaga Home Care, Mbuya
Reach Out and NAFOPHANU.
Appreciations go to CDC, PACE and WHO for all the support offered in the
development of the policy guidelines.
Sincere appreciations go to the following individual members of committees from
different organizations who took their precious time off and managed to contribute to
the development of this document;
Dr. Apolo Kansiime
MoH
Dr. Zainab Akol
MoH
Dr. Alex Opio
MoH
Ms. Margaret Muwonge
MoH
Dr. Elizabeth Madraa MoH
Dr. Betty Kasanka
MoH
Ms. Pamela Mugisha
Ms. Teddy Rukundo
Baylor College
MoH
Dr. Barbara Mukasa
Mildmay
Ms. Domitilla A Odongo
MoH
Mr. Richard Okwi
MoH
Ms. Madinah antumbwe
Kitovu Mobile
Dr. Alice Namale
CDC
Ms. Florence Nagawa
NAFOPHANU
Dr. Eric Ikoona
Dr. Peter Nsubuga
MoH
MoH
Dr. Jennifer Ssengooba
Hospice Uganda
Dr. Lillian Mukisa
Mulago
Ms. Jane Nabalonzi
MoH
Mr. Sam Enginyu
MoH
Ms. Robinah E Nakasi
MUK
Mr. Micheal Muyonga MoH
Mr. Frank B Atukunda
Kisiizi Hospital
Dr. Elizabeth Namagala MoH
Dr. Hafsa Lukwata
MoH
Dr. Dorothy Balaba
PACE
Dr. Esiru Godfrey
Dr. Godfrey Kayita
MoH
Dr. Maria Nanyonga
MoH
Nsambya Home
Care
Dr. Hudson Balidawa
MoH
Mr. George A Nkugwa
Uganda Red Cross
Mr. Joel Arumadria Tivu
Kuluva Hospital
Dr. Alex Ario Riolexus MoH
The facilitating team of Dr. Andrew Balyeku and Dr. Herbert Kadama and Ms. Annet
Katamba (MoH) for typing and editing the policy guidelines.
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
Special mention and recognition go to WHO Country and Regional Offices for the
technical and financial support with special mention of Ms. Rita Nalwadda, Dr.
Beatrice Crahay, Dr. Innocent Nuwagira, Dr. Frank Lule and Dr. Evelyn Isaacs from
WHO/IST/ESA. Many thanks also go to the additional committee members who
reviewed and edited the final drafts.
Dr. Zainab Akol
Programme Manager STD/ACP/MOH.
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
1 INTRODUCTION
1.1
BACKGROUND
Home Based Care in Uganda focuses on quality of care and prevention being
made available to all who need it, across a continuum extending from the
health facility to the community and to the family. This care should be
comprehensive and accessible to all in need, not stigmatising, sustainable
and supported by motivated and informed communities and health service
providers.
Within the health sector, supporting and expanding the provision of Home
Based Care and strengthening referral systems to other health facilities and
complementary services is one of the strategic objectives of Uganda National
AIDS Strategic Plan (2007/8-2011/12) and a core intervention in the Health
sector AIDS Control Program.
Despite expanding availability of AIDS control program services, notably
Antiretroviral Therapy (ART), HIV Counselling and Testing (HCT) sites and
PMTCT, HIV/AIDS service coverage is still constrained by insufficient access
to entry points, insufficient adherence to medication, widely prevalent stigma,
strong resistance to serostatus disclosure or sharing treatment information
with a household member and low utilisation and availability of HIV/AIDS
prevention services. There are many people who do not know their status with
only 10-12% of men and women between the ages of 15-49 years having
tested for HIV and received the results1. At the same time, about 70% of
people have expressed the desire to be tested. With the increase in testing
coverage, more HIV positive clients are expected and will need care,
treatment and prevention services. Provision of quality HIV/AIDS services
beyond the health facility and particularly at home is now a key focus of all
HIV/AIDS subprograms within the health sector.
1Uganda
National Sero-behavioural Survey, 2005/6
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
1.2
HOME BASED CARE
HEALTH SYSTEM
WITHIN
THE
NATIONAL
Home Based Care contributes to the second goal of the National Health
Strategic Plan (NHSP) which is to improve the quality of life of People Having
AIDS (PLHA) by mitigating the health effects of HIV/AIDS by 2012. The target
is to scale up and reach 80% of those in need of care and treatment by the
year 2012. Home Based Care works within the health system and structures
in each Health Sub-District, involving cross referrals from all levels of care
(whether public or private, formal or informal) to the households.
Community support for Home Based Care is at Village Health Team (VHT)
level. The VHT provides a network of Community Health Workers whose main
aim is to facilitate the process of community mobilization, empowerment for
health action and serving as the first link between the community and the
formal health service providers. Being within the community, Home Based
Care provides a vital link between prevention, treatment, support and care to
all affected families.
1.3
JUSTIFICATION
With increasing access to HIV/AIDS care services, there is an increasing
number of AIDS patients in conditions of poverty and restricted access to
quality health care. The demand for services has led to over-burdened health
facility services in hospitals and Health Centres. Within the current situation of
low staffing, poor patients and staff morale and other operational constraints,
HBC is increasingly recognized and formally integrated into the continuum of
HIV/AIDS-focused services and thus needs to be standardized and regulated.
With the advent of free antiretroviral drugs, resurgence of tuberculosis and the
need for consistent HIV testing and monitoring, HBC service needs have
become more complex and technical. HBC coverage is very low compared to
the number of patients in need of the services and mainly concentrated in
urban and peri-urban communities and mostly under Non-Governmental
Organizations and civil society organizations. HBC service delivery lacks
standards to guide provision of HBC services and accreditation procedures to
regulate organizations providing Home Based Care services.
Even within the sector, various ACP sub-programs have found need to be
linked to community components for their specific interventions. Unless HBC
guidelines are developed, HIV/AIDS service provision at community and
household level will remain fragmented, ineffective and unsustainable.
1.4
PROCESS OF DEVELOPING DOCUMENT
These guidelines were developed through consultations and consensus
building process. A Home Based Care (HBC) task force developed the initial
scope of the guidelines with wide consultations among stakeholders and
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
based on an assessment of HBC in the country. The guidelines were
developed and discussed by experts at national consensus workshops. The
guidelines were developed in line with the national decentralization policy,
National AIDS strategic Plan, Health sector Strategic plan (HSSP II) and
National HIV/AIDS/STI strategic plan.
1.5
PURPOSE AND OBJECTIVES OF THE POLICY GUIDELINES
The purpose of the National Policy and implementation guidelines is to
provide a consistent framework for implementers to use in providing and
expanding health sector Home Based Care services for people living with
HIV/AIDS.
1.5.1 Goal
The overall goal is to provide a frame work to guide implementation and
expansion of comprehensive HBC package for people infected and affected
with HIV/AIDS.
1.5.2 Objectives
The specific objectives are:
1) To define the minimum technical HBC interventions to guide in planning,
provision and regulation of quality HBC services.
2) To provide a frame work for accreditation of sites/institutions providing
HBC services.
3) To provide a frame work for monitoring and evaluation for HBC services.
1.5.3 Strategies for HBC
The following are key HBC strategies that should contribute to the
achievement of the national HBC objective.
The overall strategy of these policy guidelines is to roll out quality HBC
activities within the AIDS Control Program activities by harmonising
community and home based ACP efforts.
Build capacity for provision of HBC services through training of VHTs at
community level: The strengthening of care teams is vital to improving the
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
quality of care. Ongoing development of staff and volunteers will also assure
the future of Home Based Care in the country.
Carry out regular supervision: to ensure that institutions involved in HBC
adhere to the national HBC policy guidelines
Strengthen the referral system between communities and health
facilities using VHT structures: referral enhances provision of quality
services at all levels.
Scale up access to HBC service provision: promoting equitable distribution
of services to those in need of them.
Strengthen partnerships and linkages of different key stakeholders
involved in HBC: It fosters better coordination and collaboration of all
stakeholders involved in the provision of HBC services.
Integrate HBC in all HIV/AIDS and related interventions like PMTCT and
ART, at all levels; this fosters linkages and referrals within the HIV
programmes and others like RH, TB and Paediatric.
Empower the PLHA and their families in self care and positive living:
Providing information to families and patients allows them to make
appropriate decisions and empowers them to complement care providers
throughout the continuum of care.
Strengthen strategic information system for HBC through monitoring
and evaluation: Continually reviewing and assessing Home Based Care
programmes by monitoring activities such as supervisory visits and case and
record reviews will keep Home Based Care implementation on track. M&E is
the component that brings standards into action, ultimately reaching the
patients and their families.
1.5.4 Scope
It is recognised that Home Based Care is a broad concept with various
sectors contributing to the holistic process of care given to people infected
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
and affected by HIV in their home settings. These guidelines focus on the
health sector quality of care and prevention interventions, across a continuum
extending from the health facility to the community through VHTs and to the
family. They serve as guidelines for community components of interventions
in the Health Sector ACP including ART, nutrition, PMTCT, HCT, STI, TB/HIV,
collaboration and positive prevention, among others.
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
2. RATIONALE OF HOME BASED CARE
2.1
BENEFITS
Home based care in the health sector is promoted and scaled up as part of
the continuum of care and as a linkage between the ACP sub-Programs at
community and household levels. In addition, HBC benefits PLHA, their
families, the community, as well as the health service delivery system.
Though these guidelines focus on the health sector HIV/AIDS interventions,
HBC ensures that children and families have access to wider social welfare
services within their communities.
2.1.1 Benefits to the Person having HIV/AIDS (PLHA)
Home Based Care enables the PLHA to take more responsibility for their own
wellbeing in a homely environment and receive care from emotionally trusted
people (VHT).
It also allows the client to continue participating in family
affairs, retain a sense of belonging to their social groups, and accept their
condition more easily and reduces the hospitalisation psychological trauma
among PLHA. Through its integrated care and referral linkages at all levels, it
ensures access to the continuum of treatment, care, support and preventive
services.
2.1.2 Benefits to the Family
Home based Care contributes to family solidarity, helps the family to accept
the infected person’s condition, and makes it easier to provide care and
support to the PLHA (e.g. adherence to treatment and nutritional
requirements). HBC can reduce health care costs, and makes it easier for
family members who provide care to attend to other responsibilities.
It also offers an opportunity for family members to access other HIV/AIDS
prevention and care services like VCT, PMTCT, ART, community-based
Directly Observed Treatment Short Course (CB-DOTS), palliative care,
orphans and vulnerable children (OVC) support, and family planning.
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
2.1.3 Benefits to the Community
Home Based Care helps to reduce health care costs, affords opportunities for
community members to fight stigma and discrimination and to provide support
to PLHA, contributes to community cohesiveness, and raises awareness
about the causes and impact of HIV/AIDS.
2.1.4 Benefits to the Health Care System
Home Based Care, helps ease the demand on health care facilities, doesn’t
require the creation of extra services where none exists, and extends
responsibilities to individuals, families and communities. Though it reduces
unnecessary visits and admissions to health facilities, it does not aim to shift
the burden solely onto the community and family care givers.
2.2.
TARGET AUDIENCE
2.2.1 Users
This document is intended to provide a framework to guide planners,
managers and implementers of HBC at National level and District/sub district
level including VHTs. It is also intended to guide Non-Governmental
Organizations (NGOs), Faith Based Organizations (FBOs), and community
groups (CBOs) involved in HBC, in developing or expanding Home Based
Care (HBC) programs for people with HIV/AIDS (PLHA).
2.2.2 Population
Home Based care programs should primarily or secondarily focus on all
people living with HIV and their families because their interaction within
society both contributes towards and reflects the success of the collective
treatment and care efforts. Providers must have the willingness and capacity
to make services accessible to a wide range of individuals living with
HIV/AIDS, including minorities and individuals with disabilities. However, for
HBC programs to make a reportable impact, the priority primary target
population should include:
1. People on ARVs requiring follow up
2. Women enrolled on PMTCT
3. Children PLHA
4. Adolescent PLHA
5. People with HIV/TB co-infection
6. Persons with disabilities living with HIV/AIDS
7. Elderly persons (60 years and above, policy for the elderly persons
2009)
8. Persons with mental conditions
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
Special groups including nomadic groups, persons with some of the non
communicable conditions, prisoners and people living in camps for
internally displaced persons (IDPs) may also be targeted.
2.3
ELIGIBILITY CRITERIA FOR HBC
All people with HIV/AIDS needing medical care in the home are eligible for
HBC. Ideally, home-based care programs should not be recruiting patients on
their own, but rather should have patients referred to them from clinics.
Therefore, a person eligible for HBC should have the HIV status known and
enrolled to at least one of the clinical based programs such as ART (including
paediatric), PMTCT, STI, or TB
At a minimum, the following target PLHA should be referred to and enrolled in
HBC programs:
1. Newly enrolled PLHA (including children) in ART, PMTCT, STI or TB
programs.
2. PLHA who are not getting the right nutrition and need nutrition
assistance
3. PLHA who do not pick up their drugs at appointed time
4. PLHA with adverse reactions to ARVs or TB treatment
5. Routine visits (set the time according to the ART team guidance) for
monitoring ARVs adherence.
2.4
GUIDING PRINCIPLES FOR PROVISION OF HBC
a. Home Based Care services are affordable to all AIDS clients
b. Equitable distribution of HBC services throughout the country at all
levels
c. Non-discrimination on basis of sex, age, ethnicity, HIV sero-status,
and socio- economic status.
d. Involving, empowering and working within existing community
structures especially PLHA networks and Village Health Teams.
HBC programs for HIV/AIDS are supposed work through the VHT
structures at community level.
e. Involvement of family care giver(s) for every patient to reduce on
the work load of VHTs and others.
f. Observation of other existing national HIV/AIDS/STI/TB service
protocols and guidelines
g. Integration of HBC in all HIV/AIDS and Sexual and Reproductive
health (SRH) services.
h. Information sharing and networking with other organizations offering
HBC
i. Promote service linkages with other sectors
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
2.5
CHALLENGES TO IMPLEMENTATION
Many, but surmountable, challenges are expected in implementing these
guidelines. In order to facilitate the implementation of these guidelines, the
MOH/ACP needs to develop a number of tools to address the following.
a. Weak referral linkages between Health Facility-based HIV/AIDS
services and HBC providers.
b. Need to improve HBC linkages with other support related activities.
c. Need to develop well-defined discharge procedures of patients to
and from facilities.
d. Need to strengthen HBC service coverage which is low through
VHT structures.
e. Low financing of HBC specially to meet the cost of kits and counter
the high volunteer drop outs
f. There is need to develop standardised forms for recording,
monitoring, supervision and reporting on HBC.
g. Difficulties in managing volunteer base
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
3. MODELS FOR HOME BASED CARE SERVICES
HBC program directly assists family caregivers and clients or indirectly assists
community organizations/networks and their existing care programmes in
providing health and other social services. Several models of Home Based
Care programmes are in place and vary in philosophy, infrastructure, cost,
productivity and effect. These include formal government sector model, NGO
Home Based Care Model, PLHA driven model, integrated Home/Community
Based Care model centre, Hospice Integrated Model.
Overtime, the HBC policy makers in the Ministry of Health have developed
sufficient pragmatic information about the different models to emphasize two
distinct home care models for people affected and infected with HIV/AIDS are
emphasized in these policy guidelines: (1) The Community Based Home
Based Care and (2) The Health facility outreach Based Home Care.
3.1
FACILITY BASED HEALTH CARE OUTREACH MODEL
The Health Facility Based Home Care is essentially an outreach initiative by
health facility staffs that coordinate, collaborate and supervise community
level workers to deliver HIV/AIDS services within homes.
Figure 1: Organogram of Facility Based Model
Health Facility AIDS Clinic
Outreach
Home visiting
Networks
CBO & NGO
Training & collaborations
Social Workers
Lower level
Health facilities
or Home visit
Training & Supervision
HIV/AIDS Outreach
HBC team
PLHA/ Care
giver/Family
The health facility has an established outreach team that coordinates and
supervises the HBC services in the community. Discharge planning and
referral of PLHA is made through this team. PLHAs are counselled and plans
for Home Care are made with their informed choice.
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
During discharge, the PLHA is linked to the facility based HBC team that
carries out home visits for specific indications such as palliative care for
bedridden clients, treatment adherence support for ART and/or Tuberculosis
(TB), nutritional support, PMTCT, spiritual support, HCT for family members of
the PLHA, disclosure and infant feeding options.
3.2
COMMUNITY BASED HOME CARE MODEL
These are community initiatives predominantly run by trained persons in the
community on a “voluntary basis” with support from community organizations,
churches and health facilities. Volunteers affiliated to networks or
organizations may receive incentives or not.
In this model, support groups are established by an NGO, CBO, FBO, PLHA
network or any other groups to provide prevention, treatment, care and
support services. A team of community based volunteers, or facilitated
workers, are trained to support home caregivers. These community based
volunteers then work with:
a. Existing local structures to identify potential clients and refer them
to Health facility.
b. Health facilities to take on referred PLHA.
c. Receive clients referred by health facility to the community
Figure 2: Organogram of Community Based Model
NGO, CBO, FBO
or PLHA network
PLHA/ caregiver/
Family
Village Health Team
Social Welfare
Village Health Team
Training and support
Health Sector
Village Health Team
Education
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
This model has worked well with some NGOs and faith based
organisations. They refer complicated cases to health facilities or social
support groups as appropriate.
4. ROLES AND RESPONSIBILITIES OF THE DIFFERENT LEVEL OF
CARE
4.1
NATIONAL LEVEL
In line with its roles and responsibilities outlined in the national Health Policy,
the Ministry of Health will:
a. Create a supportive environment through formulation and
dissemination of policies, guidelines, standards and tools including
IEC and training materials.
b. Mobilize and allocate resources for equitable distribution in
collaboration with development partners.
c. Coordinate operational research and advocacy.
d. Monitor and evaluate implementation of HBC policies.
e. Promote and sustain HBC inter-sectoral and inter-program
coordination at national level.
f. Integrate HBC supervision within the national level support
supervision, monitoring, and data collection framework.
g. Build capacity to plan and implement HBC.
4.2
DISTRCIT LEVEL
In line with its roles and responsibilities outlined in the national Health Policy,
the District will:
a. Ensure that HBC activities are prioritised and integrated in all district
and HSD health plans.
b. Increase advocacy and awareness for civic, community and NGO
participation in HBC services.
c. Incorporate HBC in the
 The quarterly integrated district supervision to health facilities and
communities.
 Plan and conduct technical/specialised HIV/AIDS/TB supervision
d. Prioritise and Integrate the HBC commodities (for example, gloves) in
the facility and HIV/AIDS supplies so as to ensure their availability at
various levels.
e. Establish effective referral system for the continuum of care between
different levels of the service.
f. Identify HBC coordinators and trainers to build capacity at all levels.
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
g. Monitor, evaluate and report on HBC activities within the routine
reporting system.
4.3
FACILITY LEVEL
The health facility makes the initial diagnosis of HIV/AIDS and delivers clinical
care (HCT, management of OIs, ART, PMTCT, Sexually transmitted infections
(STIs) care and family planning services). All health facilities will play a major
role in HBC especially through direct delivery of HBC outreach services or
support of community-based Home Based Care. Specific roles will be:
a. Recruit the eligible PLHA into the HBC program and prepare the
PLHA for discharge or referral.
b. Identify needs of the PLHA at various levels.
c. Train, supervise and support community HBC.
d. Provide simple medication, HBC messages and basic home nursing
supplies.
e. Establish a referral network with other support and HBC providers
within the facility catchment area.
f. Monitor, evaluate and report on HBC in the catchment area through
the health and Uganda AIDS Commission systems.
4.4
NON FACILITY BASED HBC PROVIDERS
There are a number of non facility-based NGOs, CBOs and FBOs providing
HBC in the country. NGOs and CBOs should work within HBC guidelines
frame work to strengthen HBC programme by providing support to village
health team structures. These are expected to provide both clinical and non
clinical aspects of Home Based Care and support. Within the health sector
services, these organisations are expected to:
a. Link with the health facilities to ensure effective client referral,
volunteer training and supervision.
b. Provide HBC training for volunteers
c. Keep client records and reports confidentially.
d. Report on HBC activities to the health facility and community
structures.
e. Raise community awareness and support for HBC.
f. Actively participate in preventive activities.
g. Monitoring volunteer numbers
h. Monitor number of cases per volunteer
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
4.5
COMMUNITY VOLUNTEERS (VHTs)
a. Use formal and informal opportunities to educate about HIV/AIDS
and how to prevent it and other information for example, nutrition,
infection control, extra.
b. Visit, educate and support care of the patient by family carers.
c. Provide a link between the health facility and the patient/family and
the contact persons for HBC at the facility.
d. Recognise illness and serious signs and refer to the health centre
when the person with HIV/AIDS gets a new illness with significant
symptoms.
e. Monitor the care provided by primary carers at home level through
records and reports on HBC.
f. Distribution of supplies such as condoms and drugs.
g. Follow up on HIV positive mothers
4.6
FAMILY CARE GIVERS
Family care givers are members of the family who look after a sick person at
home. Care givers are valued as the main source of care for ill people. More
specifically care givers will:
a.
b.
c.
d.
e.
f.
g.
h.
4.7
Care for PLHA at home
Collaborate with other care providers such as religious institutions,
support groups, health and social institutions.
Consult the PLHA on matters concerning them
Help the PLHA on treatment adherence support
Ensure infection prevention and control in the home
Refer to community volunteers or health facilities
Participate in other HIV/AIDS prevention activities
Provide dietary and nutrition support
PLHA
PLHA must be encouraged to play an active role when care and support is
given in their homes. PLHA will:
a. Identify a home care giver/treatment supporter
b. Participate in self-care, writing a will, live positively and advocate for
behavioural change.
c. Consent to home visits and services to family
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
5. HOME BASED CARE SERVICES FOR HIV/AIDS
5.1
TECHNICAL HOME BASED CARE SERVICES
Home Based Care for PLHA and their families involves an interlinked set of
services that form a continuum of care approach. It reinforces the linkages in
a continuum to all the HIV/AIDS health and social services. HBC program
should be able to directly assist family care givers and clients or indirectly
assist community organizations/networks and their existing care programmes
in providing the core health sector services. As shown in Table 2 below, a
formal HBC program should provide HBC technical activities (in the table)
under one or more core interventions.
Table 2: HBC PACKAGE AND SERVICES
HBC Package
HCT
ART
PMTCT/PAED
PALLIATIVE
/NURSING
TB/HIV
NUTRITION
PSYCHO-SOCIAL
SUPPORT
STI
HBC services
 Home Counselling
 Home HIV testing
 Referral from and to home to facility for Testing
 Infection control
 ARV refills
 Adherence counselling and monitoring
 Referral (side effects/laboratory monitoring)
 ART prophylaxis for babies and + ART to mothers
 Infant feeding options and maternal nutrition
 Family planning services
 Involvement of men in PMTCT
 Early childhood identification/ diagnosis and referral
for treatment and care
 Infection control
 Pain management and symptom control
 Emotional and spiritual support
 Palliative care education for health workers and
care givers
 TB/HIV assessment
 Treatment of OIs
 TB DOTS/ Contact tracing
 Infection Control Practices
 Nutritional education/IEC materials
 Replacement and therapeutic feeds
 Psychosocial care
 Linkage to support groups
 Health Education and Promotion
 STI identification, treatment and referral
 Partner notification
 Infection control
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS





IEC
Hygiene Education
Positive Prevention
ABCD approach
Health promotion
Infection control
As HBC is formalized within other ACP subprograms, it should not be
separated from their NGO foundations. Instead, the community components
of each sub-program should recognise and upgrade existing HBC initiatives at
all levels of HIV/AIDS policy and practice. There are vast areas of overlap
between the ACP sub-Program activities.
5.2
FACILITY LEVEL SERVICES
Health facilities should ensure 24-hr access to health care and provide
medication and other supplies for Home Based Care to the client or caregiver.
Patients will be referred to HBC services either from out patients or at
discharge. A clear discharge process should therefore be used by all facilities.
However, for referral to be effective, the facility should have a list or directory
of organisations offering the different services within its catchment area
The facility HBC team should provide coordination and supervision of HBC
services. As the HBC services are quickly becoming more technical, training
of community volunteers by qualified health workers is critical and orientation
of health workers in identification and provision of palliative care services is
paramount. Facilities may continue providing facility based and outreach
HIV/AIDS services especially counselling and testing.
5.2.1 Pain Management and Symptom Control
It is a human right to access pain control medications when in need of them
and when duly prescribed. Therefore all patients in pain should have their
pain managed according to WHO analgesic ladder. Importantly, oral morphine
should be easily available, accessible and prescribed by a trained health care
provider.
5.3
COMMUNITY LEVEL SERVICES
5.3.1 HIV counselling and testing
HIV counselling and testing is an entry point into HIV/AIDS care for HBC to be
provided. Bringing HCT out of health facilities and close to communities
increases the number of people who seek to know their status. HBC should
contribute to counselling for HIV, TB and STI testing especially among
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
households with PLHA. In remote communities, HBC providers may be
trained as VCT counsellors.
HBC can also assist in promoting partner
notification, couple counselling and to identify those infected in the
community. HBC providers also serve as prevention educators for the
families and communities of their clients, as well as educating the clients
themselves about positive prevention.
5.3.2 PMTCT
HBC providers should follow the community level PMTCT guidelines. All
pregnant women should be referred to a health facility for testing and
assessment. Effort should be made to ensure that all HIV positive women
deliver in health facilities. HIV positive mothers should be followed up in
postnatal care especially for family planning, support of infant feeding options
and early infant diagnosis with DNA PCR.
PMTCT services should be delivered in within the broad Sexual and
Reproductive Health as stipulated in the PMTCT policy.
5.3.3 IEC Material Distribution & Dissemination
Adequate IEC materials are available in the different programs in the country.
Any new materials will need to go through the development process and
approved by the ministry of health before application. The community
volunteer should be able to educate, distribute, utilize and disseminate the
IEC materials.
5.3.4 Community Mobilisation
Community volunteers and leaders are key in mobilising the community.
Mobilisation is important for people to understand the HBC programme,
service or project initiated in their locality. People should be fully involved and
participate in the initiated HBC intervention and community HIV/AIDS
outreach activities.
At a minimum, mobilisation should be seen through a good turn up in
meetings, and outreach activities. Increased activity of PLHA support groups
and networks in HBC is also an important target for mobilisation.
5.3.5 Palliative Care
The community members should be able to understand the Palliative care
concept so that they are able to identify patients in need and refer them
appropriately.
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5.3.6 Referral
There should be a mechanism established for referral of clients from the
community and the health facility and vice versa.
5.4
HOUSEHOLD SERVICES
5.4.1 Prevention of TB
HBC providers' clients experience a variety of health issues in addition to
those directly related to HIV/AIDS. Many HIV-positive people are co-infected
with tuberculosis and all HBC programs should follow the national guidelines
on HIV/TB prevention and control. HIV/AIDS has demonstrated links with TB.
TB and HIV co-infection is seen in 50% of TB patients and TB is one of the
commonest OIs in PLHA. It is highly infectious and can be readily passed
from TB patients to caregivers and vice-versa. All TB patients should be
assessed for HIV and vice versa.
5.4.2 Infection prevention and control
HBC clients live in malaria-endemic areas, and are particularly prone to waterborne illnesses and other public health threats due to their compromised
immunity. Infection prevention and control is critical and must work in both
directions to protect the PLHA and the caregivers. Home based care
programmes must provide information and training on standard infection
prevention and control for PLHA family members, care givers and the
community.
a. Persons infected with HIV have lowered immunity therefore are prone
to infections. Therefore the followings should be observed:
 Caregivers must be informed about the need to take care to avoid
situations where they may pass infection to the PLHA.
 Care givers and family members should also avoid stigma and
discrimination while offering care to PLHA
 The general hygiene of the home should be observed.
 Also personal hygiene of the patient should also be observed.
 Proper sanitation should be observed in the home
 Both PLHA and care givers must be educated on preventive
measures for OIs like diarrhoea and TB etc.
b. All persons involved in the direct care of PLHA, must be informed of
the possibility of contracting the virus through contact with
contaminated body fluids. All caregivers must be trained in basic
procedures for handling body fluids and practicing standard infection
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
prevention procedures such as wearing gloves or other protective gear
or using disinfectants. Caregivers who are accidentally exposed
should follow guidelines for Post Exposure Prophylaxis (PEP) which is
provided at health facilities.
c. PLHA can easily pass on the infection to other people or get re-infected
through various ways. Thus there is a need for the home care team to
continuously educate the PLHA, individual, family and the community
about HIV infection, prevention, and control. Safe sexual behaviour will
be part of health education given to the PLHA, care givers and their
family in the entire community.
5.4.3 Nutrition Support and Food Safety
Nutritional care in HIV is important in improving the quality of life among
PLHA.
The Ministry of health provides comprehensive guidelines on
Promoting Nutrition in HIV and these should be followed in programs offering
HBC. Education on food preparation, hygiene and food storage should be
provided to care givers/family members and, where possible nutrition
supplement should be provided.
5.4.4 Psychosocial Support
Patients/clients undergoing HBC care should be given the entire spiritual,
psychological, physical, social and emotional support at all levels of care
provision. Psychological support in the context of Home Based Care includes
all non-medical services provided to all PLHA and their care givers to ensure
the mitigation of psychological and social problems of HIV-infected
individuals, and their partners, families and caregivers in their homes.
Psychosocial support should be geared towards reducing stigma and helping
the PLHA and family to access other HIV/AIDS support services e.g. spiritual
support, VCT for family members, PMTCT, Nutritional support and food safety
and IGAs.
5.4.5 Physical Nursing Care
HBC programs should be able to provide nursing care to the sick in their
homes. Nursing is the art of caring for the sick in their home in order to
promote good health, prevent further spread of disease, prolong and
rehabilitate life. The objectives of nursing care components are to:
 Alleviate physical and psychological symptoms
 Maximize the level of function of the affected person
 Systematically assess the needs of the sick
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS

Ensure that medication is administered according to the prescribed
regimen
5.4.6 PMTCT
Women and households are increasingly able to access interventions to
prevent mother-to-child transmission (PMTCT) during pregnancy and delivery.
Emphasis is placed on individual and community support for education, infant
feeding and follow up for the mother and the infant. HBC programs should be
able to identify HIV positive mothers and use them an entry point to extend
HIV services to the entire family. This initiative is essential in identifying family
members (partners and children) who may require comprehensive HIV
services. These services include VCT, prevention counselling for family
members, comprehensive PMTCT package to the mother, support of infant
feeding options, offering of ARVs if necessary, disclosure support etc.
5.4.7 Care of the infected and affected Children
HBC programs should be able to identify children born to HIV mothers and
those with signs and symptoms of HIV and refer for early childhood diagnosis,
treatment, care and follow up in the health facility. This is crucial in survival in
children infected with HIV. HBC programs should use the National Integrated
Management of Childhood Illness strategy (IMCI) guidelines and algorithm on
care of children infected or affected by HIV/AIDS for community level actions.
5.4.8 Adherence Support
Before the advent of antiretroviral therapies, HBC consisted mostly of informal
nursing and palliative care. Now, however, many people are increasingly able
to access life-prolonging and health-improving ARVs. The national ART
program places major emphasis on individual and community support for ART
literacy and adherence. Adherence is a joint effort between the patient, their
family and friends, health care workers supporting that patient, including HBC
program workers. In addition to taking their ARVs correctly follow the medical
instruction, PLHA should be trained to recognise warning signs, and
supported in self management in order to improve their health. HBC plays a
role in helping clients understand the importance of taking ARVs correctly and
to overcome any problems that may stop them from doing so. All programs
should offer adherence counselling for long-term medications such as, antituberculosis (anti-TB), cotrimoxazole and antiretroviral therapy (ART)
fluconazole, among others.
HBC programs should ensure that a client is met at least once a week, a pill
count done and compared with the records and client encouraged to take
treatment correctly. Special follow up such as an increased number of visits
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
and referral to another level of care may be necessary. For clients who may
have difficulty in adhering to medication “problem clients’’, efforts should be
made to train a treatment supporter or ‘buddy’ identified with the consent of
the PLHA to support his/her adherence. HBC programs should ensure that
PLHA are seen by a qualified health worker at least once in 3 months.
5.4.9 Care for family members/Caring for the Carer
Care givers including community volunteers and extension workers are the
backbone of HBC. They face a number of challenges in the process of
providing care which may lead to stress, infection and re-infection and burn
out. HBC programs should be able to recognise early warning signs and
address these challenges for care givers to continue providing quality care.
In addition to the personal coping methods, specific tools for coping with the
stress of care giving should be developed.
HBC programs should
continuously support volunteers and primary caregivers of clients through but
not limited to sharing coping strategies during counselling or home visiting
sessions. They should offer psychosocial support services, and address
burnout issues. There should be PEP program for care givers in case of
accidental injuries.
5.4.10 Sexually Transmitted Infections
STIs should be prevented among the HIV positives through behaviour change
and adoption of safer sex practices; including abstinence, faithfulness,
condom use, and diagnostic HIV testing (ABCD) and this should be an
integral part of all HBC programs. Disclosure of HIV status to partners and or
family members contributes to behavioural change and to treatment
adherence.
The presence of STIs greatly increases the chance of transmitting HIV and it
increases the level of the virus in those who are already infected. The
weakened immune system caused by HIV infection renders the body more
susceptible to both types of infection. Screening and prompt treatment of
STIs are critical in the efforts to contain the HIV epidemic.
HBC programs have to continuously encourage PLHA and family members to
go for STI screening and treatment where applicable. HBC programs could
be instrumental in STI identification and partner notification in order to
promote early detection and access to treatment.
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
5.4.11 Condom Promotion
The community distributors / ABC+ promoters are expected to:

Create awareness about the presence of condoms in the community
and make them available in selected places.

Teach peers about prevention of STIs (ABC+) and unplanned
pregnancies.

Demonstrate correct Condom use and talk about consistency and
correct disposal

Collect Condoms from nearest service centres such as, Health units
and provide report of distribution exercise.
5.4.12 Treatment Preparedness
a. Community Preparedness
Treatment preparedness is the process of preparing PLHA and their
caregivers including the surrounding community to start ARVs and
other treatments related HIV/AIDS treatment. Treatment preparedness
involves the PLHA, family members and the community that can help
or support the success of ART interventions. HBC programs should
assist to mobilize and sensitize the community about ARVs, act as a
treatment supporter and refer suspected clients to health facilities and
other support centres. Available National IEC should be used to
educate on treatment preparedness and any new IEC materials should
be tested for relevance.
b. Individual preparedness
Patients usually require information in relation to a number of treatment
attributes such as costs, availability, duration, side effects, interactions,
contraindications and accessibility of prescribed medicines. HBC
programs should be equipped with appropriate knowledge to support
patients, who need to start on ARVs and those already taking them.
Information needs to be given on ART in children and pregnant
women. This information is provided in the MoH Adherence Support
Manual which should be used by HBC programs.
5.5
STRUCTURING HBC SERVICE DELIVERY AT DIFFERENT LEVELS
a. Facility Level: Each facility offering HIV/AIDS related services shall
have a facility focal point person who is in position to provide linkage
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
between the facility and community structures. This person should be
trained in comprehensive HIV counselling and be a member of the
Home Based Care team.
b. Community Level: The community based volunteer should be
selected by community and have high integrity to keep confidential
information, be literate, reside in the community of work, ready to
volunteer, preferable PLHA and trained in HBC provision.
It is
important that HBC programs avail both genders and aligns with the
VHT policy. Each programme will collaborate with other stakeholders
in the district to develop and provide standard incentive packages for
their Community HBC volunteers.
Various community structures exist for promotion established
community based health services where HBC occurs, such as the
VHT, self help groups FBOs, CBOs and PLHA networks. Already VHTs
are mandated by policy to mobilise support among leaders and
community in general, support health referrals, participate in
development of HBC promotional materials and manage local health
information. Thus, HBC program should support integration of
standardised HBC messages and ensure that where VHTs exists,
there is adequate leadership in HBC and this will enhance support for
primary HBC target population and that HBC activities are integrated in
the district plan all the way from the grassroots
c. Household Level. The family care giver is a person who will directly
care for PLHA. Patients on long term care will be cared for at home by
a primary care giver. A primary care giver needs not be a family
member but could be friends and neighbours. It is ideal that more than
one primary care giver is trained so that they support each other and
ensure continuity when one is away.
6. MEDICINES, SUPPLIES AND EQUIPMENTS FOR HBC
Depending on the model being used, various supplies are essential to
providing high quality Home Based Care, include first aid and basic nursing
supplies, household supplies, protective gear for the providers and
communication and transportation facilities. The HBC programme shall use
commodities within the current national Essential medicines List, equipment
and supplies. Treatment shall follow the National Standard Treatment
Guidelines (STG).
The medicines, equipments and storage system shall be integrated into
national health system reporting at various levels. The government of Uganda
recommends three categories of kits for HBC services: the facility-based kit,
the community volunteer kit, and the family care kit. Medicines allowed at
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
each level of care are listed in the current national STGs and Essential Drug
List (An annex of the Kit is required).
6.1.1 Facility-based Kit
The facility-based kit may usually contain a wider range of medications
including classified medicine, in addition to intravenous administration sets
and medications.
6.1.2 Community Volunteer Kit
The community volunteer kit consists of the following: Portable waterproof
bag, over the counter medicines such as Paracetamol, Acetylsalicylic acid,
Calamine lotion, anti-malarial and essential supplies such as gloves, soap,
dressings, disinfectants, razor blades, plaster, bandage, condoms, ORS.
6.1.3 Family Caregiver Kit
The family care kit should contain the following: Container / bag, gloves, soap,
dressing’s disinfectants, ORS and prescribed medicine for PLHA. These kits
should be given to family caregivers
6.1.4 PLHA Basic Care Kit
PLHAs need to use the basic care kit to prevent opportunistic infections and
improve the quality of life. The basic care kit consist of water treatment
products, a safe water vessel, Long lasting insecticide treated nets(LLINS),
Condoms and information on Co-Trimoxazole Prophylaxis, Prevention with
positive counseling(PwP), Family planning, nutrition, TB prevention and
Palliative care.
7. TRAINING
HBC programs should use the national HBC training guidelines for care
givers and community volunteers to train their home care givers and
community volunteers offering HBC services. This should be done in
collaboration with the national and district trainers to ensure quality.
a. Trainers of Trainers: A national team of Trainers of trainers will be
scaled up involving representation from MOH/ACP sub-programs
(HBC, HCT, ART, PMTCT, and M&E,) and other relevant players and
stakeholders. The national team will ensure harmonious continuity with
HBC program and avail the relevant resource materials developed for
community level.
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
b. District Trainers: Each district (or region in case of small districts)
should have a team of people trained as trainers in HBC. Care should
be made to include members from government, PNFP or PFP where
feasible. After training, the trainers will also serve as technical
supervisors for HBC services for lower levels.
c. Facilities Focal point persons: These may be part of the district
trainers. They should ensure that HBC is incorporated in the facility
continued medical education (CME) sessions and coordinate the
community HBC volunteers and/or primary caregivers. They will also
ensure that all facility staff involved in HIV/TB/STI management and
control activities receive CME in HBC provision and support.
d. Community HBC Volunteer: These should be trained as close to
their communities as possible and using adult learning techniques. The
principle training manual used will be the MOH/WHO training manual.
After training, kits should be availed and support supervision carried
out at once in two to three months.
7.1
REFERRAL PROCESS
This should be a two way communication and referral system between health
facilities and communities to other institutions that contribute to care of PLHA.
At a minimum, HBC programs should be able to refer to health facilities, other
HIV/AIDS programs and support groups like PLHA support groups. A number
of referral tools are already in place and need to be revitalised or adapted by
districts for specific HBC program requirements. To ensure effective referral,
all HBC programs should ensure that they plan and implement the following:
 Use the MoH standardized referral forms and register
 Use updated referral directory of all stakeholders involved in
HIV/AIDS care in HSDs and sub-counties
 Publicising and informing communities and PLHA of available
support groups.
Facility-based programs should develop a systematic process that
includes a discharge summary in the eligible client’s record which
includes the reason for the discharge and a transition plan to HBC
services. All facilities providing HIV testing and or ART services should
have clear channel for referring clients to HBC service points.
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
8. STEPS IN ESTABLISHING AND MAINTAINING HBC PROGRAMME
Planning clearly defines the purpose of the HBC program and establishes
realistic goals and objectives consistent with HBC within the organization’s
capacity for implementation and the district plan. The following
implementation steps incorporate careful analysis, feedback, and redesign
throughout the entire process.
Step: 1.
Needs Assessment
HBC programs should carry out baseline survey to establish the
community needs. Use strengths, weaknesses, opportunities and
threats to prioritize felt needs of the community. They should also
assess community response to past programs, characteristics of
community: whether rural or urban, population pattern (whether youth,
elderly, migrant population), economic activities, sustainability and
estimate resources requirements of HBC program.
Step: 2.
Planning, Implementation, Supervision
Develop a plan of action based on findings of needs assessment with
objectives, strategies, possible interventions, inputs needed to carry
out HBC, and expected outputs of HBC services. Discuss the
intervention plan for the identified needs with the community, opinion
leaders, care givers, clients/ patients, and other significant people.
Seek consensus from stakeholders and coordinate with MOH and the
District HIV/AIDS Committee
Step: 3.
Implement the plan of action
The plan of action is a framework that will guide the implementation of
essential elements for HBC, namely:
 Supplies and equipment
 Staffing; establishing an effective mix of health professional,
community volunteers and care givers
 Education and training
 Referral mechanism to ensure continuum of care for PLHA
 Financing and resources mobilization
 Evaluation of program progress and performance
The plan will delineate activities, roles and responsibilities, and
timetable for identified activities with realistic expectations.
Step: 4.

Evaluating the process and Outcome of HBC
HBC team will monitor program progress and performance on a
regular basis. The HBC team is responsible for day-to-day
quality assurance against Ugandan standards, policies and
regulations related to health delivery in HBC settings.
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS

HBC programs will contribute to Ugandan government strategies
and time frames for monitoring and evaluation plan developed
by the National MOH STD/AIDS Control Programme.
Step: 5.
Seek feedback (two way)
Feedback should be a two way process, and should be sought from the
different stake holders for appropriate revisions. Evaluation findings will
be used to inform program improvement and decision-making.
Reviewing evaluation results will lead to mid-course corrections as
needed
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
9. MONITORING AND EVALUATION
There are special considerations for monitoring HBC Programs because the
needs of the client and his/her family care and support will change over time
and hence the HBC services offered must therefore be adjusted over time.
Regular monitoring and evaluation of the efficiency and effectiveness of the
comprehensive care continuum is thus important in supporting that the client
to access the necessary services and maintain acceptable quality of life.
The District Home Based Care Committees are responsible for monitoring
and evaluating the various Home Based Care programmes in their areas to
ensure compliance with HBC policy guidelines and maintain quality service.
9.1 What is Monitored and Evaluated in Home Based Care.
The whole range of activities of the HBC programme should be monitored and
evaluated. Questions to ask when deciding what to monitor and evaluate
include:

How many PLHA or families are benefiting from the HBC programme?

How many village health teams have been trained to participate in the
HBC programme?

How well do referral and networking systems work between health
facilities and communities?

How has the community responded to the HBC programme in terms of
utilisation of services like HCT, PMTCT and care and follow up of
clients on ART, among others?
9.2 Levels of Monitoring and Evaluation
Monitoring and evaluation for HBC programme can take place at various
levels;

PLHA-Family level: Starting with the caregiver, relatives, and VHT
members. These parties give each other feedback on the progress of
the programme based on their assessments of how the PLHA has
been helped
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NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS

Community level: This involves all stakeholders, for example, VHTs,
CBOs and NGOs, among others.

Health facility level: At this level all the professionals implementing
the components of Home Based Care are involved in monitoring and
evaluation.
9.3 How Monitoring and Evaluation are done in Home Based Care
The processes of monitoring and evaluation in HBC are similar to those for
other activities. They include:

Data collection by observation, interviews, home visits.

Review of existing literature, reports/records.

Meetings, such as collaborative meetings among stakeholders.

The data regarding HBC programme will be collected and reported to
health facilities, which in turn will be reported to district and national
levels.
9.4 M&E Framework for Home Based Care programme
Monitoring and evaluation system can immediately focus on three main
indicators of programme effectiveness:

Number of PLHA or families participating in HBC programme

Number of VHTs trained in HBC programme.

The quality of care provided to PLHA and families.
As the programme gains experience, it can begin to consider other elements,
such as level of community support, financial sustainability and impact of
prevention messages.
9.5 Minimum Monitoring and Evaluation requirements
At minimum, the programme should plan a monitoring and evaluation system
that consists of the following:

Monthly assessment of PLHA conditions (monitored by VHTs).

Quarterly assessment of programme operations – VHTs will give
reports to nearest health facility.

Annual evaluation of HBC programme operations and impact (carried
out by district and national level) to assess: Community participation,
35
NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
coverage, potential for sustainability by utilizing the data collected over
time.
9.6 Core Indicators of HBC programmes
All
HBC
programmes
should
report
the
following
core
indicators
disaggregated by sex and age.
National level Indicators
 Percentage of districts with HBC services.
 Percentage of districts with persons trained in HBC.
District level indicators
 Percentage of Health facilities linked to a home based programme.
 Percentage of community based volunteers trained of those targeted
for training.
 Proportion of trained community based volunteers submitting reports
promptly.
 Percentage of clients receiving HBC service package out of those in
need or targeted.
36
NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
10. LEGAL ISSUES IN COMMUNITY & HOME BASED CARE
Human Rights and Community Development initiatives have a wide common
ground: On a daily basis HBC providers come face-to-face with the impact of
violations of human rights and lack of access to development initiatives. As a
result, they often take on the roles of advocate and activist in addition to
caregiver. Safeguarding human rights is an essential part of responding
effectively to the AIDS epidemic at individual, family, community, national and
global levels. The government must ensure a supportive legal and policy
framework for scaling up HBC including safeguarding the human rights of
people seeking AIDS related services.
10.1 RIGHTS AND ACCESS TO AIDS AINFORMATION AND
PREVENTION
Informed consent and confidentiality should be observed for PLHA while
offering HBC services. In order for HBC to be provided, a clinical diagnosis
and HIV counselling and testing (HCT) will be necessary. Ensuring an ethical
approach to conducting HIV testing; this includes defining the purpose of the
test and the benefits to the individuals being tested and assuring that there
are links between the site where testing is conducted and relevant treatment,
care and other support services. Testing should be done in an environment
that guarantees confidentiality of all medical information.
10.2 RIGHTS OF CHILDREN INFECTED OR AFFECTED BY HIV/AIDS
Children shouldn’t be discriminated against on the basis of real or perceived
HIV status, and should be protected from HIV and Sexual exploitation. Some
of the issues which Home Based Care givers should consider when handling
children with HIV/AIDS and those who are orphaned or vulnerable include:
 Sensitizing the public on the special needs, rights, and responsibilities
of children.
 Sensitizing the children about their rights and responsibilities regarding
HIV/AIDS care.
 Linking with existing community – based and other appropriate support
programs for the displaced, homeless, orphaned, disabled, street, and
delinquent children.
 Supporting the National Council of Children (NCC) to enable it to
implement its policies and programs.
37
NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
10.3 GENDER CONCERNS
The majority of HBC caregivers and volunteers are women who already face
other burdens women face as a result of their gender, including vulnerability
to poverty, denial of women’s property and inheritance rights and violence.
HBC Programs should be planned and structured to avoid exacerbating
existing gender inequality. HBC should not be promoted as “women's
work”. Special information and sensitization programmes are necessary
to make men assume greater responsibility to safeguard and protect the
health of women and children, respect women’s sexual rights. The
socio-economic benefits of safe motherhood and Planned Parenthood
should be emphasised. Other issues to be considered by HBC programs
in relation to men include:
 Sensitizing men in gender issues and the promotion of the health of
their spouses and children by encouraging use of health services and
discouraging social cultural practices that endanger the lives of women
and children
 Review, amend and enforce the Affiliation Act to ensure that a man
provides adequate paternal support for his family.
10.4 STIGMA AND DISCRIMINATION
HBC programmes must observe non-discrimination in the workplace, health
care settings, or social functions, which may result in denial of benefits,
privileges or services to people living with or affected by HIV/AIDS. People
who test positive should not face discrimination and should have access to
sustainable treatment. Reducing AIDS related stigma and discrimination at all
levels, notably within health care settings is important.
38
NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
REFERENCES
1. The Health Sector HIV/AIDS Strategic Plan (2007/10), Ministry of
Health, Uganda, 2007.
2. National standard treatment guidelines, Ministry of Health, Uganda,
2007
3. Home Based Care, Community Volunteers Training Manual (draft),
Ministry of Health, Uganda, 2008
4. The Uganda HIV/AIDS Sero-Behavioral survey June 2005, Ministry of
Health, Uganda, 2007
5. Health Service delivery Assessment, Ministry of Health, Uganda, 2008
6. National AIDS Strategic Plan (2007/8-2010/11), Uganda AIDS
Commission, 2007
7. HBC evaluation studies WHO and Italian Initiatives; reports.
8. List of essential drugs, 2007, Ministry of Health, Uganda, 2007.
39
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