DISABILITY-INCLUSIVE SEXUAL AND REPRODUCTIVE HEALTH
COMPONENT
TRAINING OF TRAINERS MANUAL ON DISABILITYINCLUSIVE HIV AND SEXUAL AND REPRODUCTIVE
HEALTH FOR HEALTH WORKERS
SEPTEMBER 2011
Contents
Part 4 – Disability-inclusive sexual and reproductive health services .............................. 3
Session 1: Disability, sexuality, and sexual and reproductive health ........................... 4
Session 2: Disability-inclusive family planning ........................................................... 18
Session 3: Disability-inclusive maternal, neonatal and child health ........................... 36
Session 4: Disability-inclusive sexually transmitted infections management ............. 65
Part 5 – Disability-inclusive HIV prevention integrated into sexual and reproductive
health services .............................................................................................................. 85
Session 1: Disability-inclusive prevention of mother-to-child transmission of HIV...... 86
Session 2: Disability-inclusive post-exposure prophylaxis ......................................... 93
2
Part 4 – Disability-inclusive sexual and
reproductive health services
3
Session 1: Disability, sexuality, and sexual and
reproductive health
Process
1. Share the session’s objective with the participants
2. Ask participants to form four groups, and each group should discuss these three
concepts and the relationship between them: ‘sexuality’, ‘sexual health’,
‘reproductive health’. Each group should have at least a member the experience
in sexual and reproductive health
3. Allow groups to present their perspectives in a plenary session
4. Discuss participants’ responses and highlight the points under facilitator’s notes
5. Together with participants, discuss the sexuality of the following groups of
persons:
a. Women with spinal cord injuries versus men with spinal cord injuries
b. Female polio-survivors versus male polio-survivors
c. Men who are deaf versus women who are deaf
d. Women with intellectual impairments versus men with intellectual
impairments
e. Women who are blind versus men who are blind
6. Build on 5 above to discuss the intersection between disability and sexuality
using facilitator’s notes
7. Ask participants to reflect on the reasons why SRH services are inaccessible to
persons with disabilities
8. Make two columns in a flip chart. Write their responses on the basis of whether
the reasons for inaccessible SRH services are structural or attitudinal (stigma &
prejudices). Use these to lead a discussion on the consequences of these
factors/reasons
9. Ask participants to list legal instruments for protecting sexual and reproductive
rights of persons with disabilities that they are aware of. Lead a discussion on
4
sexual and reproductive rights of persons with disabilities using participants’
responses and facilitator’s notes
10. Ask participants to mention why they think persons with disabilities need SRH
services
11. Write participants’ responses in a flip chart, and discuss further with the
facilitator’s notes with focus on points not already made by participants
12. Ask participants to highlight the differences in SRH needs of women and men
with disabilities. Facilitate a discussion using their responses and facilitator’s
notes
13. Ask participants to differentiate between SRH needs of men with and without
disabilities. Lead a discussion around the topic based on their responses and
facilitator’s notes
14. Ask participants to brainstorm which services qualify as SRH. Write their
responses in flip chart
15. Reveal SRH services in a PowerPoint presentation slide
Objectives

To enable participants to understand sexuality of persons with disabilities

To enable participants to understand sexual and reproductive health and rights of
persons with disabilities

To enable participants to know the services under SRH
Time: 3 hours
Materials: Paper and pen, flip chart, markers, laptop computer,
projector
5
Facilitator’s notes
Sexuality
According to the WHO1, ‘sexuality is a central aspect of being human throughout life
and encompasses sex, gender identities and roles, sexual orientation, eroticism,
pleasure, intimacy and reproduction’.
It refers to the interplay of physical, psychological, social, emotional, and spiritual
makeup of an individual2, which ‘differ
depending on where, when, and how you live;
who is raising you; and what is personally
Sexual health concerns
important to you.
include:
Positive dimensions
Sexuality can be experienced and/or expressed
Sexual and gender
through:
identity
 Sexual intercourse
Sexual expression
Relationships
 Sexual desires and thoughts
Pleasure
Negative dimensions
 Attitudes, beliefs, values
Infections with HIV, STIs
 Any behaviours and/or practices to derive
and reproductive tract
sexual pleasures or incite sexual
infections and their
pleasures in others e.g., personal
adverse outcomes (e.g.,
grooming to look attractive to another
cancer and infertility)
person, touch, talks, masturbation etc.
Unintended pregnancy
and abortion
 Being male or female (anatomy and
Sexual violence
physiology)
Sexual dysfunction
Harmful practices (e.g.,
 Gender roles (behaviours in response to
female genital cutting)
self-perception of being female or male):
e.g., dating behaviours, grooming,
dressing

Relationships
1
WHO (1975). Education and treatment in human sexuality: the training of health professionals. Report of
a WHO meeting (WHO Technical Report Series No. 572). Geneva: World Health Organisation
2
Cool Nurse (2000-2007). Glossary of sexual terms. Accessed 20 January 2011, from
http://www.coolnurse.com/sex_glossary/glossary_s.htm
6
Sexual health3

Sexual health is about well-being i.e. enhancement of life and personal relations
in terms of sexuality

Sexual health is also about absence of disease, dysfunction or infirmity that are
related to sexuality

Sexual health involves respect, safety and freedom from discrimination and
violence

Sexual health depends on the fulfilment of certain human rights

Sexual health is relevant throughout the individual’s lifespan, not only to those in
the reproductive years, but also to both the young and the elderly

Sexual health is expressed through different sexualities and forms of sexual
expression

Sexual health is critically influenced by gender norms, roles, expectations, and
power dynamics
Reproductive health4

Reproductive health is about well-being in relation to reproduction or giving birth

Reproductive health is also about absence of disease, dysfunction and infirmity
in all matters relating to the reproductive system, its functions and processes

Reproductive health implies that people are able to have a satisfying and safe
sex life

Reproductive health also means the capacity to reproduce and the freedom to
decide if, when and how often to do so
3
WHO (2010). Developing sexual health programmes: a framework for action. Geneva: World Health
Organization
4
WHO (2011): Sexual and reproductive health core competencies in primary care: attitudes, knowledge,
ethics, human rights, leadership, management, teamwork, community work, education, counselling ,
clinical settings, service, provision. Geneva: World Health Organization
7
Relationships between sexuality, sexual health and reproductive health5

Sexuality and sexual relations are central to reproductive and sexual health

Sexual health is a necessary condition for the achievement of reproductive
health

Not all sexual activities are directly related to reproduction

Sexual health concerns go beyond fertility and reproduction to encompass issues
like sexual dysfunction and sexual violence

To attain reproductive health, people need to be able to exercise control over
their sexual health and life, and to achieve healthy sexuality

Sexuality and the dynamics of sexual relationships have a fundamental influence
on the uptake and use of contraceptives, the risk of sexually transmitted
infections (including HIV), and pregnancy and abortion
The intersections between disability and sexuality can be better explained by the
factors that influence both e.g., physical, biological, social, and psychological factors.
Physical factors

Physical factors can determine how sexually attractive (which is also relative) a
person is

Impairments also may affect physical aspects of an individual, particularly
persons with physical impairments

As a result, women with physical impairments may not be considered to be
sexually attractive in some instances

However, this does not suggest that the person is not sexual because physical
attraction is only one aspect of sexuality

Even then, physical attraction or beauty itself is socially constructed. It is not an
absolute phenomenon. The presence of disability (physical or otherwise) does
not preclude the person from being sexually active
5
WHO (2010). Developing sexual health programmes: a framework for action. Geneva: World Health
Organization
8
Biological factors

Biological factors especially regarding the physiological aspects of sexual
intercourse may be compromised by some types of disability e.g., spinal injury

Such individuals may then explore other methods of deriving sexual pleasure
such as touch

Not being able to engage in sexual intercourse does not mean that somebody
cannot live a sexually-fulfilling life. Remember, sexual intercourse is only one
component of sexuality

In addition, some other factors can indirectly affect genital response e.g., fear,
pain, low self-esteem, difficulties in voluntary control of the body, attitudes of
family or partner, and effects of medications
Social factors
Myths of ‘asexuality’ and ‘hyper-sexuality’

Experience and/or expression of sexuality are socially constructed and vary by
culture. Social norms are used to lay down standards of what constitutes
acceptable or ‘normal’ sexuality

Disability itself is highly stigmatized in many societies, and hence it is a negative
marker of ‘difference’

According to Galvin6 “disability is often seen to remove people’s ability to engage
in ‘normal’ sexual practices and/or their capacity to incite ‘normal’ sexual desire
in others, then they either cease to be considered sexual beings or, if they persist
in behaving in a sexual manner, their desires and behaviour can only be
construed in terms of deviance”. Even persons who find persons with disabilities
attractive are usually labelled as being ‘fetish’

As such, sexuality of persons with disabilities is often suppressed and goes
unrecognized or labelled as ‘abnormal’. Therefore the sexual and reproductive
health and rights of persons with disabilities are not of priority
6
Galvin, R. (2006). A genealogy of the disabled identity in relation to work and sexuality. Disability &
Society, 21(5), 499-512
9

A good example is the denial of sexuality education to persons with intellectual
impairments by labelling of them as ‘hypersexual’, and that they will become
more promiscuous if given sexuality education

However, the presence of disability does not remove sexual desire and pleasure
from individuals; neither does it make them hypersexual

As already noted above, there are many components of sexuality. The fact that
somebody is deficient in one component does not mean that s/he is deficient in
all aspects of sexuality. If a person is not able to explore one component of
sexuality fully, s/he can always utilize any or combinations of the others to derive
sexual pleasure; and still be sexually-fulfilling
Gender roles
 Women are usually assigned the roles of caring and serving their families e.g.,
household chores like sweeping, cooking, washing

Women with disabilities are often judged to be unable to perform the roles of
wives in caring for and serving their family members due to the wrong perception
that persons with disabilities are sick, dependent and weak

Additionally, women with disabilities are perceived as not capable of fulfilling the
roles of motherhoods i.e. giving birth to and nurturing children

As a result, women with disabilities are less considered to be sexual or are
supposed not to be sexual
Attitudinal barriers to sexual and reproductive health and rights of persons with
disabilities
Barriers to sexual expressions of persons with disabilities, particularly women with
disabilities, are not due to impairments but rather informed by the misconceptions that:

Persons with disabilities are asexual

Not sexually attractive

Hypersexual

Incapable of fulfilling the roles of wives and mothers

Women with disabilities will give birth to children with disabilities
10
Key points to remember
To be sexual is to be human
Persons with disabilities are entitled to love, intimate
relationships, want to be liked and accepted, want to like
and accept others, desire and can enjoy sexual pleasures
It is normal for humans to express their sexuality in various
ways i.e. sexual activities and sexual attraction can be
whatever you want it to be
Our sexuality defines who we are, influences how we are
valued and partly dictates the rules the society expects us
to keep in our day-to-day activities
Persons with disabilities have the same emotional and
physical needs and desires as non-disabled persons.
Consequences

Denial of sexual and reproductive health (SRH) information, education and other
services

Denial of opportunities and/or rights to establish relationships and marriages,
decide with who they want to be in relationships, whether or not, and when to
have children and the custody of their children

Many are also subjected to forced sterilization, forced abortion and forced sexual
partners or marriages7

Persons with disabilities are also more likely to be exposed to gender-based
violence, as well as HIV and sexually transmitted infections (STIs)8
7
UNFPA (2007). Emerging issues: sexual and reproductive health of persons with disabilities. New York:
UNFPA
8
Groce N. (2003). HIV/AIDS and people with disability. Lancet, 361, 1401–1402
11
Other barriers include:

Physically inaccessible healthcare facilities

Inaccessible information, education and communication

Negative attitude of some health workers

Health workers’ lack of expertise in disability

Lack of awareness about disability and persons with disabilities

Exclusion of persons with disabilities from decision-making about their own
sexual and reproductive health
Consequences

Sexual and reproductive ill-health e.g., undiagnosed STIs or cancers, invasive
cervical cancer

Unwanted and/or high risk pregnancies

Maternal and child morbidity and mortality

Lack of knowledge about their sexuality

Low utilization of SRH services
Sexual rights
According to WHO9, “the fulfilment of sexual health is tied to the extent to which human
rights are respected, protected and fulfilled. Sexual rights embrace certain human rights
that are already recognized in international and regional human rights documents and
other consensus documents and in national laws”.
The application of these human rights, as well as the UN Convention on the Rights of
Persons with Disabilities (UNCRPD) constitutes sexual rights of persons with
disabilities.
9
WHO (2006, updated in 2010). Defining sexual health: Report of a technical consultation on sexual
health, 28-31 January 2002. Geneva: World Health Organization
12
Legal instruments for protecting sexual and reproductive rights of persons with
disabilities
The UN Convention on the Rights of Persons with Disabilities
The UNCRPD makes provisions for protecting the sexual and reproductive rights of
persons with disabilities, first by making accessibility a cross-cutting principle, and
specifically in five of its articles:
Article 9 addresses access to information and medical facilities
Article 16 calls on state parties to put measures in place to protect persons with
disabilities from all forms of violence and abuse, including gender-based violence and
abuse
Article 22 states the equal rights of persons with disabilities to privacy, including privacy
of personal health information
Article 23 calls for elimination of discrimination against persons with disabilities in all
matters relating to marriage, family, parenthood, and relationships, including family
planning, fertility, and family life
Article 25 requires states to provide equal access to health services for persons with
disabilities, including SRH and population-based public health programmes.
The International Conference on Population and Development Programme of
Action (ICPD PoA) recognizes:
The basic right of all couples and individuals to freely decide the size and
spacing of their families, to have the relevant information to do so and the right to
attain the highest standard of SRH. It also stresses the rights to make
reproductive health decisions without discrimination, coercion and violence.
The ICPD specifically calls for elimination of all discrimination against persons with
disabilities in matters related to SRH as follows:
Governments at all levels should consider the needs of persons with disabilities
in terms of ethical and human rights dimensions. Governments should recognize
needs concerning, inter alia, reproductive health, including family planning and
sexual health, HIV/AIDS, information, education and communication.
Governments should eliminate specific forms of discrimination that persons with
disabilities may face with regard to reproductive rights, household and family
13
formation, and international migration, while taking into account health and other
considerations relevant under national immigration regulations. (Paragraph 6.3)
Governments should ensure community participation in health policy planning,
especially with respect to the long-term care of the elderly, those with disabilities
and those infected with HIV and other endemic diseases. Such participation
should also be promoted in child-survival and maternal health programmes,
breastfeeding support programmes, programmes for the early detection and
treatment of cancer of the reproductive system, and programmes for the
prevention of HIV infection and other sexually transmitted diseases. (Paragraph
8.7)
Sexual and reproductive health services10
These refer to a group of methods, techniques and services that contribute to sexual
and reproductive health and well-being by preventing and solving sexual and
reproductive health problems.
Persons with disabilities need SRH services because:

Health is a basic human rights issue

They are sexual beings and can be exposed to sexual and reproductive health
problems

They are about three times more likely than non-disabled persons to be victims
of sexual abuse11

All the factors that increase vulnerability to HIV infection are also associated with
disability

They need information and education about their bodies, including in relation to
sexual matters so that they can know how to take care of themselves and make
informed decisions regarding relationships, family and reproduction
10
WHO (2011): Sexual and reproductive health core competencies in primary care: attitudes, knowledge,
ethics, human rights, leadership, management, teamwork, community work, education, counselling ,
clinical settings, service, provision. Geneva: World Health Organization
11
Groce, N. E. (2004). HIV/AIDS & disability: capturing hidden voices Available from
http://siteresources.worldbank.org/DISABILITY/Resources/Health-and-Wellness/HIVAIDS.pdf
14
SRH issues specific to women with disabilities

Forced sexual partners or marriages

Forced sterilization

Forced abortion

Domestic violence

Physical and emotional abuse

Sexual abuse/violence

Pregnancy, labour and delivery-related issues
SRH are often inaccessible to women with disabilities in these ways:

Lack of information on safe and effective contraception

Lack of information on the fertility problems of women with disabilities, except in
genetic conditions like Down syndrome with reported problems of infertility

Barriers in accessing gynaecological12 services like mammography and cervical
cancer screening due to inaccessible medical equipment

Have less access to SRH information such as birth control, safe sex, treatment of
STIs because they are considered asexual or supposed to be asexual

The misconception that women with disabilities are asexual could also lead to
denial of preconception care

Negative experiences with pregnancy, labour and delivery due to ignorance of
some health care workers in managing perinatal13 issues of women with
disabilities, negative attitudes towards sexuality of persons with disabilities and
communication gaps
12
Gynaecological services are health services related to the reproductive system of women or internal
and external organs of women that are responsible for pregnancy, childbirth and childcare
13
Perinatal issues refer to issues during pregnancy, labour, delivery and after delivery
15
SRH issues of men with disabilities compared to non-disabled men

SRH education – men generally are usually not targeted by SRH education. They
learn incidentally which may be difficult for men with mental and intellectual
impairments particularly

Sexual violence – men with disabilities are more vulnerable to sexual violence
than non-disabled men. Perpetrators may be fellow men or women. Access to
sexual violence reporting and care are often inaccessible to persons with
disabilities
SRH services

Family planning

Antenatal care

Delivery

Postpartum/postnatal care

Sexually transmitted infections

Screenings for cancers specific to women
Summary
Sexuality is about the way we think of and express ourselves sexually. It is the totality of
our being and has physical, psychological, social and biological dimensions. Sexuality
could be influenced by our culture, how and where we grew up. Disability does not stop
a person from being sexual. Persons with disabilities are sexual beings like the nondisabled persons, and thus have the rights to express and enjoy sexuality. However,
persons with disabilities experience stereotypes in relation to their sexuality. These
suppress the expression and enjoyment of sexuality and create barriers to access
sexual health services by this category of persons, particularly women. It is not
uncommon to find women with disabilities being forced to get sterilized, sexually
abused, and forced into arranged marriages or sexual partners. International legal
frameworks like the UNCRPD is useful in advocating the sexual health and rights of
persons with disabilities
16
Are we together?

Explain what you understand by the term ‘sexuality’

What are the barriers to the sexual health of persons with disabilities?

What are the consequences of lack of access to sexual health for women and
men with disabilities?

Why do you think that persons with disabilities have need for SRH?

List SRH issues that are specific to women with disabilities
Key resources
WHO (2009). Promoting sexual and reproductive health for persons with disabilities:
WHO/UNFPA guidance note
Maxwell, J., Belser, J.W., & David, D. (2007). A health handbook for women with
disabilities. Berkeley, California, USA: Hesperian
17
Session 2: Disability-inclusive family planning
Process
1. Ask participants to read the specific objective
2. Ask participants to discuss what they understand about family planning
3. Encourage participants to discuss the benefits of family planning for women,
men, children, families and nations
4. Present a basket/carton containing different items like key-holder, books, male
and female condoms, red ribbon, contraceptive pills, etc
5. Let the basket be passed around among participants with background music.
Whoever has the basket when the music goes off picks one item and explains
what the item reminds him/her of family planning and disabilities or women and
men with disabilities. Write responses in flip chart
6. Use bullet point 5 to lead a discussion on the need for family planning among
women and men with disabilities in a PowerPoint presentation
7. Ask participants to mention the different family planning methods that they know
8. Lead a discussion on family planning methods and group them into temporary
and permanent methods
9. Ask participants to brainstorm the difference between motivation and counselling.
Use the responses to facilitate a discussion on the difference between motivation
and counselling
10. Ask participants with previous or current experience with family planning to
narrate the process involved in family planning counselling
11. Then ask for volunteers among participants to role play being persons with
different types of impairments. For each impairment, ask participants to explain
what will change or the addition s/he will make when counselling women or men
with disabilities with that impairment.
12. Use facilitator’s notes on ‘principles and topics of family planning counselling’ to
explain counselling procedures for women and men with disabilities
18
13. Ask participants to brainstorm factors that could influence choice of family
planning methods for women with disabilities in general. Facilitate a discussion
on this with highlights from facilitator’s notes
14. Divide participants into two groups (women with physical and intellectual and/or
mental disabilities).Remind participants of the differences between intellectual
and mental impairments, and what is common to both impairments. One group
should discuss factors that will affect choice of family planning methods women
with physical disabilities and the other should focus on women with intellectual
and/or mental disabilities. Groups should present in plenary sessions
15. Use their responses and facilitator’s notes on factors influencing choice of family
planning, as well as methods that are appropriate or not for women with physical
and intellectual and/or mental impairments to lead a discussion on this issue
16. Ask participants to reflect on the use of permanent methods among non-disabled
women versus among women with disabilities. Emphasize that women with
disabilities should not be sterilized against their will or without informed choice
Objectives

Participants will be able to mention SRH services

Participants will learn how to provide family planning counselling that is
disability-inclusive

Participants will learn the interactions between family planning methods and
different kinds of impairments
Time: 3 hours
Materials: Paper and pen, markers, flip chart, basket/carton
containing different items (key-holder, red ribbon, female and male condoms,
contraceptive pills etc.), projector, laptop computer, blindfolds, wheelchair
19
Facilitator’s notes
Family planning
Family planning is about how to avoid unwanted and high risk pregnancies i.e. to decide
whether or not to have children and when to have children i.e. birth spacing, choice of
having children.
Benefits of family planning to:
Women

Affords the opportunity to rest between pregnancies, regain health and strength
so as to avoid complications during and after each pregnancy

Have healthy children

Time for self-development and capacity to contribute financially to the upkeep of
the family

Ability to breastfeed for longer in order to provide babies with nutritious food and
protection from diseases and/or infections
Men

Ability to meet the emotional and financial needs of the family

Less anxiety and stress, thus preventing ill-health and untimely death

Has more time for the family
Children

Infant mortality rate is reduced

Are able to receive more care, attention and love from parents

Provided with better opportunities for healthcare, education, other basic needs,
and employment later in life

Reduced juvenile delinquency
20
Families

Improves family well-being

Children in such families have better access to basic needs
Nations

Better provision of essential infrastructure for the citizens e.g., water, electricity,
good roads, education, health care

Ability to meet the needs of the future generation
Women and men with disabilities need family planning because:

All persons have the same rights to contraception

Disability rarely affects fertility

Many women with disabilities are prone to sexual abuse/violence

Many women and men with disabilities may want to prevent pregnancy
temporarily until they are ready to have children

Some women and men with disabilities may want to delay pregnancy on a
medium term to space their children

Other women with disabilities also may like to delay pregnancy permanently or
on a long term because childbearing and childrearing may be difficult for them

Like any other persons, some persons with disabilities may choose not to have
children for personal reasons
21
Family planning methods
Temporary methods

Low-dose combined oral contraceptives (COCs)

Progestin-only methods:
o
Progestin-only contraceptives (Mini pills)
Source: WHO (2007)
o
Long-acting injections e.g., Depot-medroxyprogesterone acetate (DMPA)
Source: WHO (2007)
22
o Norplant implants
Source: WHO (2007)

Copper intrauterine devices (Copper-T)
Source: WHO (2007)
23

Barrier methods:
o Male condoms
Source: Avert (un.)
o Female condoms
Source: WHO (2007)
24
o Spermicides14
o Diaphragms
Source: WHO (2007)

Fertility awareness-based methods (calendar and symptom-based)

Lactational amenorrhoea method15 (LAM)
14
Spermicides are sperm-killing substances inserted deep into the vagina, near the entrance into the
womb before sex. They can be foaming tablets, jelly and cream. They can be used alone or with
condoms or diaphragms
15
Lactational amenorrhoea is a temporary family planning method based on the natural effect of
breastfeeding to prevent pregnancy
25
Permanent methods

Female sterilization: e.g., tubal ligation16 , hysterectomy17
Source: WHO (2007)

Male sterilization: vasectomy18
Source: WHO (2007)
16
Tubal ligation is the cutting or tying of the tubes that carry eggs into the womb so that eggs and sperm
do not meet and pregnancy cannot occur
17
Hysterectomy is the complete removal of the womb
18
Vasectomy is the cutting or tying of the tubes that carry sperm to the penis so that sperm does not
reach eggs and pregnancy cannot occur
26
Emergency contraceptives e.g., morning-after pills
Family planning counselling
Difference between motivation and counselling
Motivation is a process of influencing another person to take an action or a decision
whereas; counselling is a process of assisting somebody to take a voluntary action or
decision.
Importance of counselling

It allows a client to be better informed about an issue

It enables an individual to take a voluntary decision without being forced

It allows better interaction between service providers and clients

It allows clients to ask questions and receive answers that will disprove
misconceptions, rumours and myths
Principles of family planning counselling applied to persons with disabilities

Treat each client well: the provider must respect each client with or without
disabilities. Disability is a stigmatizing experience and often associated with low
status which makes persons with disabilities to be treated shabbily by others
even when they are higher in status than the other person. Negative attitude of
some health workers towards persons with disabilities is one of the
reasons why there is low utilisation of healthcare services by persons with
disabilities. This is particularly so with sensitive matters involving sexuality.
Persons with disabilities are regarded to be asexual or supposed to be such.
Anything suggesting sexuality of persons with disabilities is then frowned at by
the society. No woman with disabilities should be insulted by providers for
seeking family planning services. They are humans and have the same right to
contraception as non-disabled persons

Interact: some people do not like relating to persons with disabilities due to fear,
ignorance, and stigma. Some also claim to be irritated by some types of
impairments. We should embrace diversity and learn to interact with other
27
persons regardless of disabilities. A provider can give adequate service by
understanding the person’s needs, concerns, and situation. Interpersonal skills
relevant to persons with disabilities have to be learned to be able to serve them.
Interaction is also dependent on verbal and non-verbal communications. Sign
language interpreters should be provided for persons who are deaf. Also, simple
language and direct, concrete words should be used for person with intellectual
or mental impairments (see counselling under HTC)

Tailor information to the client: this is very necessary because persons with
different types of impairments have different needs. Also, the stage of a person’s
life suggests the kind of information suitable to him/her. Disability experience
may as well be a marker of the types of information that persons with disabilities
need. Tailoring information in this case, in addition, involves providing information
in formats that are accessible to persons with different impairments

Avoid too much information: information is needed to make informed choices.
However, information overload is not suitable for anybody because it becomes
difficult to remember the relevant ones, particularly persons with intellectual
and/or mental impairments. Give relevant information in the language that the
client understands. For some types of disability, providers should note that they
may need to spend more time with the client. So information should be restricted
to only the relevant ones

Provide the method that the client wants: most clients come with a family
planning method in mind. Do not make decisions for or force your own ideas on
persons with disabilities. However, you could guide the clients to know more
about their choices by telling them the advantages, disadvantages and sideeffects of their choices. There is also the need to be sure if the choice is
appropriate for the person based on her disability or not. It must be carefully
explained to the patient why a method may not be suitable for her and the
benefits and disadvantages of other alternatives

Help the client understand and remember: the provider must show the sample
family planning methods to clients, encourage and allow her to handle them and
guide them through how to use such. This is particularly relevant to persons who
are blind. They need to practise and understand how to use a particular method.
Anatomically appropriate dolls may be suitable for practice for persons who
acquire blindness early in life or are born blind, as well as persons with
intellectual impairments. Information in prints should be made available in Braille
or in audiotapes/CDs for persons who are blind. Sign language interpretation will
be required by persons who are deaf. Clarify that the client understands the
information
28
Topics for family planning counselling
As already pointed out, counselling should be tailored to individuals. Apart from this, all
other avenues should be used to reach persons with disabilities with accessible
information on the topics e.g., radio programmes that can reach persons who are blind,
television programmes with superimposed sign language interpretation, printed
materials in Braille and large font, information in easy-to-understand formats using
pictures, video, and simple language for persons with intellectual and/or mental
impairments and persons with low literacy, posters with sign language interpretation.

Effectiveness: should be explained to clients in terms of the pregnancy rates for
methods ‘as commonly used’ to give a rough idea of what they can expect, and
‘consistently and correctly’ used to give an idea of the best possible
effectiveness. The provider should let the client know how to consistently and
correctly use a method

Advantages and disadvantages: let clients know the advantages and
disadvantages of particular methods as relating to their impairments e.g., women
with no abdominal sensation may need to avoid IUD while IUD may be suitable
for women with intellectual impairments due to poor memory

Side-effects and complications: clients need to know the side-effects associated
with particular methods so that they are not scared and abandon the medication
when the symptoms appear. They also need to know which side-effects are signs
of danger and the need to go back to the provider and which side-effects are
bothersome but are not dangerous or will resolve with time. If a method rarely
has side-effects, this also has to be communicated to the client in accessible
formats.

Usage: clear, practical instructions on how to use a particular method must be
communicated to the client. For persons with low manual dexterity, alternative
methods of use may be explored with the provider or plans made on how to seek
partner’s assistance. Clients need to know what to do if a dose of pills is missed
such as having additional family planning coverage to avoid pregnancy. Clients
with intellectual and/or mental impairments may need help on how to remember
to take their pills on a daily basis

STI prevention: providers of family planning can help clients understand and
measure their risk of STI infection, including HIV. Clients may be offered
screening for STIs so as to access treatment. Dual protection is advisable to
prevent both pregnancy and STIs. This may also provide an opportunity to offer
29
accessible HTC to clients as a preventive method, as well as entry for treatment,
care and support if they are HIV-positive

Follow-up: there may be reasons to return to the clinic including to get more
supplies or to access further services. Whatever the case is, disability factor may
come into play. Persons with disabilities may not be able to attend clinic
frequently. So that long appointments are given and a plan is made for
alternative ways of monitoring. Persons with intellectual impairments may have to
be reminded of their appointments by phone or other methods
Factors influencing choice of family planning methods in women with disabilities

Physical disabilities may affect acceptability, safety and appropriateness of
certain methods

Intellectual disabilities may have an effect on informed consent for contraception

Some medications interact with hormonal methods of contraception

Health conditions of women especially. For example, women with circulation or
hypertension problems will not be prescribed contraceptive pills
30
Women with physical impairments
Method
Advantage
Other consideration
Combined pill (COC)
Obtained on prescription from
a GP or family planning clinic.
There are many different pills
available; the one most
appropriate to each individual
can be prescribed. Contains
two substances, oestrogen
and progesterone, the newer
pills have less hormones but
are just as efficient if taken
properly.
Progestin-only/Mini pill
Contains one substance:
progesterone
Very effective when
properly used.
Requires only a
small amount of
manual dexterity.
Controls and reduces
menstrual bleeding,
and period pains.
Not to be taken in combination with some
other drugs e.g., drugs used to control
epilepsy. So the doctor should ask for all
drug treatments that the client is on.
Dependent on intelligence and motivation.
Possibility of increased thrombosis19 risk in
physically inactive women such as
wheelchair users. Progesterone-only pill and
injectables (DMPA) should be considered
Contains no
oestrogen, so sideeffects due to
oestrogen are
eliminated. Requires
only a small amount
of manual dexterity.
Very effective, no
further contraceptive
precautions
necessary. Helpful if
user is forgetful or
not suitable for IUD.
Not quite as effective as the combined pill.
Irregular periods, for some women. Must be
taken regularly at about the same time each
day, i.e., within 3 hours. If later, continue pill
and use condom for 2 days.
DMPA
A drug given by injection.
Regular injections needed
every 12 weeks.
19
Irregular periods at first, then no periods.
This may be beneficial for women with poor
manual dexterity. May have side-effects
such as weight gain and loss of bone
density. Return of fertility may take 6-10
months approximately
Thrombosis is deadly blood clots that block vessels/tubes that carry blood to different parts of the body
31
Method
Advantage
Other consideration
Male condom
Made of thin rubber, and
placed on the erect penis
before intercourse. Acts as a
barrier preventing sperm
reaching the egg. The penis
must be withdrawn from the
vagina immediately after the
male orgasm as the penis
gets smaller after ejaculation,
when the condom could slip
off.
Very effective when
used correctly and
consistently. Easily
obtained from
chemists, family
planning clinics etc.
No side-effects or
drug interference.
Protection against
sexually transmitted
infections.
Manual dexterity required by one or other
partner to put it on. Dependent on motivation
and intelligence. If condom bursts or slips
off, post-coital (morning-after pill) treatment
should be sought without delay from GP or
family planning clinic.
Female condom
Made of thin rubber, and
inserted into the vagina to
cover the cervix before
intercourse. Prevents sperm
from reaching the egg. Has to
be removed immediately after
the penis comes out after
orgasm.
IUD
A small usually plastic and
copper device put into the
womb by a doctor. It must be
periodically checked and
changed every 3-5 years.
Very effective when
properly used. Can be
obtained from
chemists or family
planning clinics. No
side-effects.
Once put in, no further
contraceptive
precautions are
required.
It requires manual dexterity by one or other
partner to put it on and to remove. It is also
dependent on motivation and intelligence.
May cause abdominal discomfort and heavy
periods (where toileting is difficult this can be
a disadvantage). Inadvisable for a woman
who takes anticoagulants20. Care must be
taken if the woman has no abdominal
sensation, to check that the IUD is still in
place, and to look for signs of pelvic infection
or ectopic pregnancy. IUD insertion may be
difficult in women who have cerebral palsy,
scoliosis and multiple sclerosis due to
contraction of certain thigh muscles. IUDs
increase menstrual flow which can lead to
anaemia with resultant respiratory problem
in women with polio and rheumatoid arthritis.
It also poses menstrual hygiene challenges
to women with reduced manual dexterity
Adapted from Outsiders (un.)
20
Anticoagulants are medications that prevent blood clots or thin the blood
32
Women with intellectual and/or mental impairments

Some persons with intellectual and/or mental impairments can use methods that
require memory, like taking daily COCs or progestin-only pills. But when the
ability to remember may be highly compromised, long-acting methods like DMPA
and IUDs will be more suitable

However, some women with intellectual and/or mental impairments have high
level of intellectual functioning; can make informed choices and are able to use
any methods reliably. Thus, it is essential to adopt a person-centred21 approach
and not just jump to methods that require little or no understanding and
involvement of users for all women with intellectual impairment

Hormonal methods should be avoided in persons with intellectual and/or mental
impairments who have concurrent epilepsy. Medications (phenytoin,
carbamazepine, phenobarbital) used to treat epilepsy may decrease the amount
of hormonal contraceptives in the blood system, rendering them inefficient. They
seem not to reduce the efficacy of progestin-only injectables. The provider should
always ask to know which other medications that the client is on. It is not
uncommon to find persons with intellectual impairment with epilepsy as well

A bullet point removed from here

Norplant causes irregular bleeding and may be problematic for persons with
inadequate menstrual hygiene

Fertility awareness-based methods may be difficult to use for persons with
intellectual and/or mental impairments
Other circumstances

Women with disabilities who are on ARVs (nevirapine, ritonavir, nelfinavir) should
also not be given COCs because their effects are reduced by these ARVs, or
else they are covered by another contraceptive e.g., condom use

On the other hand, ARVs like fosamprenavir, amprenavir, atazanavir, efavirenz
increases the level of circulating COCs. To avoid side-effects alternative
contraceptive methods should be used or lower the dose of COCs
Person-centred approach is a method of providing services in a way that is specific to a person’s needs
and not using one method/approach for everybody
21
33

Women receiving treatment for tuberculosis e.g., rifampicin should also be given
hormonal contraceptives with caution, preferably combined with another method
like condom because rifampicin reduces the efficacy of hormonal contraceptives
Permanent methods

Women with disabilities should not be forced to be sterilized without informed
choice

There must be proof that such women understand the implication and are making
informed choice

It is often justified that such women are being spared of childbearing and
childrearing in their own interest, which is not true in most cases
Summary
Family planning is one of the components of SRH. Every human being regardless of
disability has right to family planning. Women with disabilities should be able to access
family planning services just like any other women. Most of the family planning methods
can be used by women with disabilities. However, service providers need to take
disability-specific requirements into consideration when serving some women with
disabilities.
Are we together?

Mention the components of SRH

What are the benefits of family planning to women, men, children, families,
communities, nations?

List the different family planning methods

Mention disability-specific issues in recommending family planning methods to
women with different types of impairments
34
Key resources
Avert (un.). Using condoms, condom types and sizes. Accessed on 9 June, 2011 from
http://www.avert.org/condom.htm
Best, K. (1999). Disabled have many needs for contraception. Network,19(2).
Accessed on 3 February, 2011 from
http://www.fhi.org/en/rh/pubs/network/v19_2/disableneeds.htm
Best, K. (1999). Mental disabilities affect method options. Network,19(2). Accessed on
3 February, 2011 from
http://www.fhi.org/en/RH/Pubs/Network/v19_2/mentaldisab.htm
James, R.M. (2010). Disability and birth control: part one. Accessed on 3 February,
2011 from http://www.deeplyproblematic.com/2010/05/disability-and-birth-controlpart-one.html
Kaplan, C. (2006). Special issues in contraception: caring for women with disabilities.
Journal of Midwifery & Women’s Health, 51(6): 450-456
National PMTCT guideline (2007/2008). Back pocket updates: prevention of mother-tochild transmission of HIV
Outsiders (un). Contraception for people with disabilities. Accessed on 3 February, 2011
from http://www.outsiders.org.uk/leaflets/contraception-with-disabilities
WHO (2007). Family planning: a global handbook for providers
Tidy, C. (2010). Contraception and special groups. Accessed on 3 February, 2011 from
http://www.patient.co.uk/doctor/Contraception-and-Special-Groups.htm
35
Session 3: Disability-inclusive maternal,
neonatal and child health (MNCH)
Process
1. Ask participants to read out the objectives of the session
2. Ask participants to mention components of maternal, neonatal and child health
3. Ask participants to identify barriers that African women generally face in
accessing pregnancy, delivery and postnatal services. Encourage those with
previous or current knowledge in this aspect to help others
4. Encourage participants to reflect on these and apply the points made to pregnant
women with disabilities. Write down their responses in flip chart. Together with
the participants, identify the dimension of access that each response refers to
5. Lead a discussion with the use of PowerPoint presentation on the different
dimensions of accessibility difficulties that women with disabilities face in
accessing MNCH services, and the probable consequences
6. Divide participants into different groups of impairments. Each group should
discuss barriers and facilitators in accessing MNCH services by women with
different types of impairments based on the different dimensions of accessibility
difficulties discussed in 5 above. Let a representative from each group present in
plenary
7. Facilitate a discussion on whether or not women with disabilities should be
mothers
8. Ask participants to brainstorm the differences between focused antenatal care
(FANC) and traditional antenatal model. Encourage participants with relevant
experiences to share with others
9. Lead a discussion on the implications of FANC for women with disabilities
10. Identify four persons who have experience working on MNCH. Assign each
objective of FANC to each person. Ask one female participant to role play a
pregnant woman accessing antenatal care. Then, ask each of the four persons
the procedure that they will go through in achieving the objective of FANC
assigned to them.
36
11. Have the four participants assume that their client has a particular impairment (to
be chosen by the client), ask the provider to role play how s/he will handle the
case. Have the rest of the participants comment, clarify or add ideas to the
procedures
12. Facilitate a discussion on the disability-specific issues of pregnant women with
different types of impairments. Draw participants’ attention to the fact that
most of the conditions need to be managed by specialists, and that the
purpose is to create awareness about these conditions so that health
providers can refer if they encounter such cases
Objectives

To enable participants to identify barriers and facilitators of accessible MNCH by
women with disabilities

To facilitate the understanding of disability-specific issues in caring for pregnant
women with disabilities
Time: 4 hours
Materials: Paper and pen, flip chart, markers, projector, laptop
computer
Facilitator’s notes
Components of MNCH
1. Focussed antenatal care
2. Labour and childbirth
3. Postnatal care/childcare
37
Barriers to accessing antenatal, childbirth and postnatal services
Adapted from: FMOH (2008)
Dimensions of barriers to accessing antenatal, childbirth and postnatal services
for women with disabilities
In addition to the identified barriers above (which are worsened for women with
disabilities), they also face more barriers to access that are unique to them. Access
could assume different but interrelated dimensions depending on the person’s ability
and willingness to enter the service facility22:

Availability, which refers to the relationship between the extent and type of
services available to address women’s needs
22
Penchansky, R. & Thomas, W. (1981). The concept of access: defining the relationship to consumer
satisfaction. Medical Care. 19(2), 127-140.
38

Accessibility, referring to the relationship between the location of the women
and the location of the services e.g., proximity, physical accessibility

Accommodation, which is the relationship between the service providers and
the organisation of resources to accommodate women e.g., provision of sign
language interpretation

Affordability, referring to the women’s ability to afford the services

Acceptability, which refers to the relationship established between health
services providers and the women
The consequences are:

Low services utilisation

Dissatisfaction with services and care received

Inequality in service provision

Negative health consequences on women with disabilities, infants and family to a
larger extent

Morbidity and mortality of mothers and infants
Barriers to accessing pregnancy, delivery and postnatal services by women with
physical disabilities

Availability
o Lack of awareness of available services

Accessibility
o Proximity
o Transport
o Lack of social supports
o Physical accessibility of the premises/facilities
39

Accommodation
o Lack of information about pregnancy and specific physical disabilities
o Lack of providers with expertise in managing pregnant women with
physical disabilities

Acceptability
o Negative attitudes and behaviours of service providers and support staff
o Lack of knowledge about disabilities among service provider

Affordability
o Poverty
o Unemployment or low income jobs
o High cost of transportation
o Additional expenses on assistive devices
Facilitators or how to address the barriers

Availability
o Create awareness among persons with physical impairments about
availability of accessible services. This can be done through DPOs

Accessibility
o Mobile or outreach services
o Enlightenment to encourage social support
o Improving physical accessibility of premises/facilities

Accommodation
o In-service training on disability awareness for service providers
o For the client to be forthcoming about the symptoms that s/he is
experiencing, healthcare providers should use positive communication
methods that are able to foster trust e.g., ‘have you noticed any sores or
40
ulcers in your genitals’ instead of ‘I know that you cannot feel if you have
any sores or ulcers’
o Research on disability and pregnancy

Acceptability
o Improving attitudes of service providers towards women with disabilities
o Training on disability and pregnancy

Affordability
o Disability awareness-raising with local employers of labour
o Encouraging local production of assistive devices
Barriers to accessing pregnancy, delivery and postnatal services by women with
sensory (vision and hearing) disabilities

Accessibility
o Difficulties regarding orientation to healthcare premises/facilities
o Difficulties in locating a seat in the waiting area
o Difficulties in realizing when to go into the examination room

Accommodation
o Lack of communication and health education in accessible formats e.g.,
lack of sign and tactile language interpretation, lack of information in
Braille, large prints, or on audiotapes/CD

Acceptability
o Negative attitudes of some service providers
o Non-recognition of needs and rights of women with sensory impairments

Affordability
o Unemployment
o Low income status
41
o Expenses on hiring persons that could give support services e.g., cost of
sign language interpreters, cost of hiring a sighted guide
Facilitators or how to address the barriers

Accessibility
o Availability of sign and tactile language interpretation, Braille, signage,
audiovisual, large fonts, pictorial systems in healthcare settings and
information in accessible formats and language

Accommodation
o Extended consultation times to allow for sign and tactile language
interpretation and practice when necessary

Acceptability
o Disability awareness training for service providers e.g., use of basic sign
language, speaking correctly for lip-readers
o Disability awareness training facilitated by women with disabilities
o Recognizing that lip-reading is a skill and that not everybody who is deaf
can or should lip-read

Affordability
o Disability awareness-raising with local employers
o Formation of support groups including skilled volunteers who use sign
language and know how to guide
o Establishment of networks with local support service providers
Barriers to accessing pregnancy, delivery and postnatal services by women with
intellectual disabilities

Accessibility
o Lack of sexual and reproductive health education and information
o Lack of social supports to access available services
42
o Lack of capacity to explain their symptoms
o Gynaecological problems arising from sexual abuse perpetrated by
persons who the clients depend on financially or for care may go
untreated
o Overprotection by parents and caregivers leading to forced sterilization
o Neglect of sexual health of women with intellectual who have been
sterilized

Accommodation
o Lack of communication in accessible formats e.g., easy-to-understand
information
o Lack of flexible conditions for consultation and follow-up

Acceptability
o Fear of being rejected services without support persons
o Fear of losing custody of children
o Discriminatory attitudes by service providers

Affordability
o Usually from poor families
o Unemployment or low income employment
Facilitators or how to address the barriers

Accessibility
o Disability awareness training to disprove myths around sexual and
reproductive issues of women with intellectual disabilities

Accommodation
o Provision of easy-to-understand sexual and reproductive information e.g.,
providers should be trained to be gentle, non-threatening and able to
simplify all questions and instructions for women with intellectual
impairments
43
o Flexible healthcare consultations and services e.g., allowing a woman who
is not comfortable with hospital environment to stay outside till it is her
time for consultation, following up with clients on phone

Acceptability
o Women should not be treated with less dignity on an assumption that they
are incapable of making decisions or are childlike
o Provision of support systems for childcare
o Improve service providers’ attitudes through disability awareness training

Affordability
o Encouraging the formation of social support groups
Barriers to accessible pregnancy, delivery and postnatal services by women with
mental disabilities

Availability
o Difficulty getting appropriate healthcare services due to lack of integration
of maternal and mental health

Accessibility
o Mental state may cause lack of motivation to attend clinics
o Rarely, women with mental impairments may deny the pregnancy

Accommodation
o Undisclosed mental impairment during pregnancy and postnatal
o Lack of knowledge of available services by pregnant women
o Lack of knowledge of mental services by obstetrics and gynaecology
specialists
o Poor screening practices leading to missed diagnoses

Acceptability
o Fear of stigmatization by families and service providers
44
o Fear of losing custody of children
o Avoidance of medications that may impact negatively on the health of
babies
o Avoidance of medications that may impair the ability to care for babies
o Negative attitudes of healthcare providers

Affordability
o Unemployment or inability to stay on a job for long
o Lack of money for transportation
o Low income to cater for children
Facilitators or how to address the barriers

Availability
o Integration of maternal and mental healthcare services by providing
training to improve communication between mental health and maternal
health service providers
o Provision of perinatal multidisciplinary team including social workers
o Provision of mother and baby psychiatric units

Accessibility
o Improvement of client-provider relationships to build trust

Accommodation
o Education of women on mental health and available services
o Facilitation of support groups

Acceptability
o Awareness-raising among health workers, families and communities to
address stigmatization of women with mental impairments
o Building supportive partnership between health workers and clients to
encourage respect and dignity for clients
45
o Low emphasis on medications; but more emphasis on psychotherapy

Affordability
o Economic empowerment of women
o Social support for childcare
Should women with disabilities be mothers?

Every woman has the right to have children if she wants

Living with disability does not mean that a woman is ‘sick’ or ‘unhealthy’

Women with disabilities’ capacity to be mothers is usually underestimated based
on their disabilities

The society controls and suppresses the reproductive rights of women with
disabilities, making them invisible as mothers

Mothers’ bodies are socially constructed as ‘healthy’ and ‘whole’. This standard is
used to judge the body of a woman with disability in terms of what it cannot do.
Thus, assuming the role of a mother is capable of giving the body different value,
status and worth
Focused antenatal care

It is personalized/individualized care provided to a pregnant woman with
emphasis on the woman’s overall health, her preparation for childbirth and
readiness for complications

It is timely, friendly, simple and safe service to a pregnant woman

It encourages the involvement of partners and family members in the care of
pregnant women and during and after childbirth
46
Differences between traditional and focused antenatal care
Characteristics
Number of visits
Traditional antenatal care
16–18 regardless of risk status
Approach
Vertical: only pregnancy issues are
addressed by health providers
Assumption
More frequent visits for all and
categorizing into high/low risk helps to
detect problems. Assumes that the
more the number of visits, the better
the outcomes
Relies on routine risk indicators, such
as maternal height <150 cm, weight
<50 kg, leg oedema, malpresentations
before 36 weeks, etc.
Use of risk
indicators
Prepares the
family
Communication
To be solely dependent on health
service providers
One-way communication (health
education) with pregnant women only
Cost and time
Focused antenatal care
4 for women categorised in the basic
component (as described later in this
study session)
Integrated with PMTCT of HIV,
counselling on danger symptoms,
risk of substance use, HIV testing,
malaria prevention, nutrition,
vaccination, etc.
Assumes all pregnancies are
potentially ‘at risk’. Targeted and
individualized visits help to detect
problems
Does not rely on routine risk
indicators. Assumes that risks to the
mother and foetus will be identified
by using Basic Emergency Obstetric
Care (BEmOC)
Shared responsibility for complication
readiness and birth preparedness
Two-way communication
(counselling) with pregnant women
and their husbands
Less costly and more time efficient.
Since majority of pregnancies
progress smoothly, very few need
frequent visits and referral
Alerts health service providers and
family in all pregnancies for potential
complications which may occur at
any time
Incurs much cost and time to the
pregnant women and health service
providers, because this approach is not
selective
Implication
Opens room for ignorance by the
health service provider and by the
family in those not labelled ‘at risk’, and
makes the family unaware and
reluctant when complications occur
Source: EFMOH (un.). Antenatal Care Module: providing focused antenatal care
The traditional antenatal
care is NO longer
recommended
47
Implications of FANC for women with disabilities

Less emphasis on ‘risk approach’ takes away the burden of stigmatizing women
with disabilities as being ‘high-risk’ group

It reduces frequency of hospital visits for women with disabilities who do not need
it
Objective one: Early detection and treatment of problems
Service providers should identify existing medical, surgical or obstetric conditions during
pregnancy, for example:

Severe anaemia (Hb < 7 gm/dl)

Vaginal bleeding

Pre-eclampsia (increased blood pressure, severe oedema23)

STIs, HIV and AIDS, TB and malaria

Chronic diseases (diabetes, heart or kidney problems)

Decreased/absent foetal movement

Foetal malpresentation after 36 weeks
Disease detection and not risk assessment
23

Risk approach is not an efficient strategy for maternal mortality

Every pregnant, delivering or postpartum woman is at risk of life-threatening
complications

Risk factors do not predict complications (e.g., physical impairment does not
predict caesarean section)

Research showed that majority of women considered at high risk gave birth
without experiencing a complication; and most women who belong to the low risk
group develop life-threatening complications
Oedema is swelling of the body, particularly hands and legs, and at times the face and the whole body
48
Objective two: Prevention of complications/emergence of diseases that can lead
to specific impairments

Tetanus toxoid to prevent maternal and neonatal tetanus

Iron/folate supplementation to prevent anaemia

Use of intermittent prophylactic treatments (IPT) and insecticide treated mosquito
nets (ITNs) to prevent malaria

Ensure environmental hygiene to prevent intestinal worms

Presumptive treatment of hookworm infection (in endemic areas) with
Mebendazole 500mg at once anytime after the 1st trimester24
Objective three: Birth preparedness and complication readiness
Discuss birth preparedness:

Place of birth: should close to the woman’s house as much as possible,
especially if she has a physical disability

Skilled attendant: for women with disabilities who need specialized care, this is a
time to search around for providers who are knowledgeable or ready to learn
about the woman’s disability and how to give necessary support during antenatal,
labour and delivery and postnatal

Transportation: this is key for women with physical impairments particularly. She
should be able to identify the kind of transportation that is comfortable for her
during pregnancy as this may be different from the kind of transportation that she
uses when not pregnant. For example, it may be more difficult for her to get into
a vehicle that is a bit higher during pregnancy or may need support to get into a
vehicle that she could get into easily before pregnancy

Funds: could be a problem for women with disabilities due to poverty. Couples
should plan well ahead and seek social supports if necessary

Birth companion: discuss with the pregnant woman and her husband regarding
the choice of a person to be there to provide support during and immediately
24
Kinzie, B. & Gomez, P. (2004). Basic maternal and newborn care: a guide to skilled providers. Rebecca
Chase (Ed.). Baltimore: JHPIEGO/Maternal and Neonatal Health Program pp 3-58
49
after birth. It may be advisable for the support person to be somebody who could
provide assistance regarding lifting the pregnant woman with physical disability
into a vehicle

Items for clean and safe birth and for newborn
Discuss complication readiness:

Knowledge of danger signs; what to do if they arise: for this to be effective in
some women with intellectual and/or mental impairments who may not be
capable of identifying danger signs, it is good to have this discussed in the
presence of the chosen support person

Choose decision maker in case of complication/emergency

Emergency funds

Emergency transport: Adequate arrangements
should be put in place to be sure that an appropriate
mode of transportation will be available when called
upon for emergency or delivery

Blood donor
Every pregnant
woman should be
prepared for the
possibility of
complications
Discuss birth partners/companions with your clients:

A birth partner/companion may be the father of the baby, a sister, a mother-inlaw, mother or an auntie. In case of women with disabilities, it is advisable that a
birth partner is somebody who could render necessary assistance to the women
before and during labour and delivery e.g., for a
woman who is deaf the birth partner should know
Make sure that
basic sign language; for a woman who uses
clients know that
wheelchair the birth partner should be someone who
you welcome birth
partner/companion
could possibly support her to transfer from her
in your clinic
wheelchair into a car, a bed, a toilet etc.
50
Specific transport questions for the clients
Where will you deliver?
Where will you go in case of emergency?
Where is it located?
How will you get there?
How far is it from your home?
How long will it take to get there?
Have you made this journey before?
How much will it cost to arrange for transport?
How will you raise the funds for this transport?

A birth partner/companion should be involved in making individual birth plan
(IBP)

A birth partner/companion can provide support to the woman during pregnancy at
the antenatal clinic and during delivery
Objective four: Health promotion using health messages and counselling
Discuss with clients in accessible formats on the following:
 Nutrition

Rest and hygiene

Safer sex to prevent STIs, including HIV

Care for common discomforts

Use of IPT and ITNs

Drug compliance

Family planning/health timing and spacing of pregnancies

Individual birth plan

Complication readiness plan
51

Early and exclusive breastfeeding

Newborn care
1st FANC visit (< 16 weeks)

Advise on individual birth plan

Take history

Do physical examination

Look for anaemia25

Screen for syphilis10

Give tetanus toxoid, iron and folate10

Give SP if more than 16 weeks

Tell her and her partner or support person about danger signs

Counsel for HIV

Screen for TB
2nd FANC Visit (16-28 weeks)

Check on individual birth plan

Give 1st SP, iron and folate

Listen for foetal heart sound

Counsel and educate
25
Anaemia, syphilis and folate deficiency can lead to impairments (e.g., low birth weight due to anaemia
can lead to intellectual impairment; syphilis infection can also lead to intellectual impairment, and folate
deficiency can lead to spina bifida) in the newborn, as well as negatively affect the health of mother
52
3rd FANC Visit (28-32 weeks)

Check on individual birth plan

Give 2nd SP, iron and folate

Give tetanus toxoid (if 4 weeks from 1st dose)

Listen to foetal heart sound

Counsel and educate
4th FANC Visit (32-40 weeks)

Update on individual birth plan

Check for anaemia

Check foetal presentation

Do vaginal examination

Give iron and folate

Counsel and educate
53
Note
Management of most of the conditions highlighted in this
section requires expertise of some trained health care
personnel. The purpose of mentioning them here is to draw
attention of health providers to and prepare them for the
likely things that could happen in pregnant women with
certain impairments. If any of the related symptoms are
observed in clients with relevant impairments, it is good
practice for health providers that cannot handle the cases to
refer to a higher level of care.
Physical impairment-related issues in pregnancy, childbirth and childcare

Some women with physical impairments may be taking medications that have
effects on pregnancy e.g., women taking diazepam to control spasms, women
with rheumatoid arthritis on methotrexate. Providers should ask for the kind of
medications that clients are on and assess their effects on the growing baby.

Health workers should know that women with similar impairments may not be the
same and may have different levels of sensations/feelings e.g., women use
wheelchairs for different conditions, women with spinal injuries may have
sensation/feeling in some parts of the body.

Tiredness may make transfers difficult for pregnant women with physical
impairments. Health workers should make sure that tiredness is only due to
pregnancy and does not signify that impairment is getting worse.

Persons with multiple sclerosis get tired more easily. Too much tiredness in
pregnant women with multiple sclerosis may be because the impairment is
getting worse
54

Pregnant women with physical impairments who have scoliosis or rod in the
spine may need a referral to anaesthetist26 especially if caesarean section is
being considered. This is because touch is used to determine the entry point for
catheter for anaesthesia27 administration most times. Use of ultrasound is a
better guide for catheter in these cases

Oedema is normal in pregnancy due to increased blood volume. However,
limited mobility is associated with bilateral deep vein thrombosis28 which can
cause oedema of both legs. This should not be confused with normal pregnancyrelated oedema

Lack of exercise may result in obesity among women who are wheelchair-users,
and this may have implications in pregnancy

Back pain starts earlier in pregnant women with physical impairments compared
with non-disabled women. Wheelchair seating may be modified to give some
comforts or physiotherapists consulted for exercises to give more strength to
muscles of the abdomen or belly

Providers should always ask how an impairment affects women with disabilities
and how these women may be helped

Regular examination tables are too high for a wheelchair-user. Service providers
should make provision for height adjustable examination tables. For examination
beds/tables to be accessible to women in wheelchairs, they have to be at the
level of a wheelchair or slightly higher (2 inches maximum). Beds that are much
higher or lower than wheelchair seats are unsuitable for transfers even in
persons with physical impairments that are not pregnant

Wheelchairs should not be moved far away from examination tables
26
An anaethetist is a doctor trained to give drugs that make people to sleep just before and during
surgical operations and kill pains
27
Anaesthesia are drugs that are given to make people sleep before and during surgical operations and
to kill pains
28
Thrombosis is deadly blood clots that block tubes that carry blood to different parts of the body
55
Pregnant women with spina bifida

Kidney damage common due to urinary tract infections (UTIs) which is normally
common among persons with spina bifida and in pregnancy. This increases the
chances of kidney damage among pregnant women with spina bifida. Complete
emptying of the bladder and bowel is difficult in spina bifida causing urine to be
left in the bladder for too long and repeated UTIs

Determine renal function on presentation

High probability of hypertension as a result of kidney problems

Constipation due to difficulty in completely emptying the bowel

Higher risk of allergic sensitivity to latex. Has implication for use of condoms
made of latex, as well as surgical and examination gloves made of latex

Difficulty in breathing due to scoliosis29, weakness in the abdominal or chest
muscles, chiari brain stem compression (pushing of the skull down into the
cervical spine). The latter may manifest as a weak voice, pneumonia, difficulty
swallowing, difficulty with vocal chords, problem with the eyes)

Loss of mobility during pregnancy which may be reversible or not

Lack of enough space for the growing baby may result in caesarean section for
delivery. Thus, pelvic dimension has to be determined before pregnancy
Urinary tract infections
Urinary tract infection (UTI) is a bacterial infection that affects any part of the urinary
tract. Symptoms include frequent feeling to urinate and/or frequent urination, burning
sensation during urination, smelling urine and cloudy urine. Urine usually does not
contain bacteria. But when bacteria get into the bladder or kidney and multiply in the
urine, they may cause an infection of the urinary tract. Also, symptoms vary depending
on the part of the urinary tract that is affected. An infection affecting the urethra is
associated with burning sensation when passing urine while an infection of the bladder
may cause pain in the lower abdomen, slight fever, frequent urination and burning
sensation during urination. Upper urinary tract infection is the infection that affects the
kidneys. The symptoms include abdominal pain and fever.
29
Scoliosis is bent spine which is common in persons with physical disability e.g., spina bifida, polio,
cerebral palsy. It is usually due to weak muscles in the affected parts of the body
56
Risk factors for UTIs include sexual intercourse, particularly in sexually active young
women; gender (women are more prone to bladder infection than men because in
women, urethra is close to the anus and shorter); urinary catheter; heredity; diabetes.
Human bodies produce many types of wastes such as sweat, faeces and urine. These
wastes leave the body through different ways. Urine is produced by the kidneys. Some
kinds of waste products that find their ways into our blood through the food we eat,
medicines we take etc are removed by the kidneys and eliminated through the urinary
tract in form of urine (salt, water, wastes).
The urinary tract consists of:
The kidneys: remove waste products out of the blood and get rid of them in form of
urine
The ureters: are thin, tube-like structures that carry urine from the kidneys to the
bladder. There are two ureters, each draining each kidney
The bladder: is an expandable, muscular sac at the lower end of the abdomen. It
stores urine until it is ready to be passed out of the body through the urethra
The urethra: it is one tube-like structure that allows urine to pass out from the bladder.
In men, the urethra passes through the penis with an opening at the tip of the urine.
Urethra also serves the purpose of carrying semen containing sperm during ejaculation
in men. In females, the opening of the urethra is between the clitoris and the vagina
opening; just on top of the vagina opening
Source: The Nemours Foundation (1995-2011)
57
Pregnant women with spinal cord injuries

Increased UTIs frequency is a challenge

Increased likelihood of formation of pressure sores or ulcers due to increased
weight and resultant difficulty with mobility and transfer

Autonomic dysreflexia or hyperreflexia (ADR/AHR) 30 is the most serious
obstetric complication in women with spinal injuries. Common when spinal injury
is T (thoracic) 6 and above, and is due to problems in response to irritating
stimuli, including any stimuli that will cause pain or discomfort in persons with
unbroken spinal cord e.g., labour pain, full bladder, trauma, emptying bowel with
finger etc. Pregnancy is associated with many irritating stimuli. Symptoms of
ADR include nausea, headache, sweating and goose bumps below the injury,
and hypertension. It could result in death if not recognized and managed by
removing the stimuli that cause it. Each women should be encouraged to identify
the particular symptoms associated with ADR/AHR that she experiences

Difficulty in maintaining bowel regimen because of increased constipation and
ADR/AHR

Providers should know how to differentiate between ADR/AHR and
preeclampsia31 and how to prevent and treat ADR/AHR

Both ADR/AHR cause a rise in blood pressure; ADR/AHR disappears once the
source of irritation is removed

Most women with spinal injury can sense their contractions during labour in forms
of backache and increased spasticity/visible muscular contractions in parts of the
body

Pregnant women with spinal injury (T6 and above) may need spinal anaesthesia
(epidural) to prevent or reduce ADR/AHR during labour
30
Autonomic dysreflexia/autonomic hyperreflexia is a sudden, dangerous increase in blood pressure with
headaches and severe sweating. It is a way by which the bodies of persons with high spinal cord injuries
(T6 and above) respond to things that they cannot feel e.g., pain.
31
Pre-eclampsia is hypertension (high blood pressure) caused by pregnancy. It could happen in pregnant
women with or without disabilities
58
Spinal cord injury
The human spinal cord runs from the brain to the rest of the body, and comprises
nerves that connect the brain to nerves in the body. It is a highway for messages
between the brain and the rest of the body. It is protected by a series of connected
small bones called human vertebrae. Together they form the vertebrae column with the
spinal cord inside of it. The vertebrae column is also called the spinal column or the
backbone. There are 33 bones (vertebrae) that form the backbone:





7 cervical (C1-C7) – contains nerves of the spinal cord that control the muscles
of the neck and the hands
12 thoracic (T1-T12) – contain nerves of the spinal cord that control the chest
and the abdominal muscles
5 lumbar (L1-L5) – that contain nerves of the spinal cord that control the leg
muscles
5 sacral vertebrae (S1-S5) – 5 fused bones that contain nerves of the spinal cord
that control muscles of the bladder, bowel and sex organs
4 coccygeal vertebrae (fused) - tailbones
The backbone can break completely or incompletely at any point. When a person
sustains injury at any level, s/he will lose muscle controls and feelings from that part
downwards. T6 refers to injury at the level of thoracic bone number 6. It means the
person will not have muscle controls from thoracic level 6 down. This is what is referred
to as spinal cord injury or simply spinal injury.
Source: VeloNews (2009)
Source: ScoliosisNutty (un.)
59
Pregnant women with cerebral palsy

Most women with cerebral palsy have pregnancies that are free of difficulties.
However, it is possible for spasms to get worse or improve during pregnancy

Physical examination may be a bit difficult especially in women who are unable to
open their legs due to spasms. Client and provider should decide which position
is comfortable for the client

For vaginal delivery, client and provider should practise different delivery
positions ahead of time e.g., side-lying or reclining position for women who find it
difficult to keep their legs wide apart

Client and provider should decide the birth option beforehand. Caesarean section
may be better in women who experience involuntary spasms that can interfere
with delivery or pelvic impairments
Women with physical impairments that cause involuntary spasms32
This could be the case with some women with cerebral palsy, spinal injury and
poliomyelitis. During labour and childbirth, you can prevent spasms by the
following:

Exercise her limbs by bending and straightening them one after the other

If her amniotic water has not ruptured, allow her to sit in a bath of clean, warm
water

Or if her water has broken, apply cloth soaked in clean, warm water on the limbs
Source: Maxwell, J., Belser, J.W., & David, D. (2007)
32
Spasms are involuntary contractions of muscles, especially of the arms and legs
60
To relieve spasms that has already started:

Support head and shoulder with pillows to bend them forward – the position of
the head and body affects tight muscles in any part of the body. Then, bend her
legs

For leg separation, bring her knees together first

Or, hold her legs above the knees. This allows the legs to unlock or open more
easily
Source: Maxwell, J., Belser, J.W., & David, D. (2007)
Pregnant women with intellectual and/or mental impairments
33

Most of the medications are harmful to foetus33. Providers should be careful to
explore medications that clients are on

Women with intellectual and/or mental impairments may be afraid of physical
examinations. Providers should take time to explain the procedure in a simple
language with pictorials. If need be, a support person may be allowed to be with
the client during physical examination

If consent is needed for a procedure, a guardian or caregiver should be allowed
to give consent on behalf of women only when attempts from skilled persons
have failed

A level of flexibility is appropriate in making decisions especially when it involves
life-threatening conditions
Foetus is a baby that is still in the womb
61

During labour and delivery, the service provider and/or support person should
explain every stage and what the service provider wants women with intellectual
to do in simple language or in a way that she understands
Pregnant women with sensory (hearing and vision) impairments

Health providers should explain every stage during labour and delivery and what
s/he wants the women to do in accessible formats e.g., sign language, tactile
language etc.

If health providers cannot use any of these communication methods, a support
person that understands and can facilitate communication between the client and
the provider should be available during labour and delivery.
Summary
Women with disabilities do experience barriers to access MNCH services. These
barriers are as a result of attitudinal, structural, environmental systems that fail to
recognize the needs and rights of every woman. Services can be made available to
women with disabilities by first identifying and removing the barriers. All women,
including those with disabilities are prone to pregnancy, childbirth and postpartum
complications. However, certain complications that are specific to women with
disabilities can be properly handled by having knowledge of different disabilities in
relation to pregnancy. Women with disabilities themselves are important to provision of
accessible integrated MNCH services and management of disability-specific pregnancy
complications. They are therefore should be allowed to be in partnership with healthcare
providers in these issues.
Are we together?

Mention two barriers to accessible MNCH for women with:
o Intellectual impairments
o Mental impairments
62
o Physical impairments
o Sensory impairments

For each of the barriers mentioned above, list facilitators for accessible MNCH or
women with:
o Intellectual impairments
o Mental impairments
o Physical impairments
o Sensory impairments

Mention disability-specific issues that should be monitored by providers dealing
with pregnant women with:
o Physical disabilities generally
o Spinal injury
o Spina bifida
o Intellectual and/or mental impairments
o Cerebral palsy

Describe what you would do to prevent spasms in women with disabilities who
are prone to such during labour and delivery

You have a client with cerebral palsy who is in labour and has spasms. What
would you do to break or relieve her of the spasms
Key resources
ASCS (2009). Cerebral palsy factsheet: pregnancy and parenthood for people with
cerebral palsy. Advice Service Capability Scotland. Accessed 18 Jan., 2011
from www.capability-scotland.org.uk/FileAccess.aspx?id=19669
Begley, C., Higgins, A., Lalor, J., Sheerin, F., Alexander, J., Nicholl, H., et al. (2009).
Women with disabilities: barriers and facilitators to accessing services during
pregnancy, childbirth and early motherhood. Prepared for the National Disability
Authority, Ireland
63
Carty, E.M. (1998): Disability and childbirth: meeting the challenges. Canadian Medical
Association Journal, 159:363-369
DHSSPS (2004). Health and social wellbeing: women and disability. In: Equality and
inequalities in health and social care: a statistical overview report
EFMOH (un.). Antenatal Care Module: providing focused antenatal care. Accessed on 6
February, 2011 from
http://labspace.open.ac.uk/mod/oucontent/view.php?id=434986&section=20.3.3
Equity Committee of the Interim Regulatory Council on Midwifery (un.). Childbirth
support for women with disabilities. Canadian Woman Studies, 13(4): 67-70
FMOH (2008): Focused antenatal care orientation training for health workers. Abuja:
Federal Ministry of Health, Nigeria
Maxwell, J., Belser, J.W., & David, D. (2007). A health handbook for women with
disabilities. Berkeley, California, USA: Hesperian
MOH-DRH/DOMC/NLTP/JHPIEGO (2007). Focused antenatal care: malaria in
pregnancy, prevention of mother-to-child transmission, tuberculosis. Orientation
package for service providers. Nairobi, Kenya
Richmond, D., Zaharievski, I., & Bond, A. (1987). Case reports: management of
pregnancy in mothers with spina bifida. European Journal of Obstetrics and
Gynecology. Reprod. Biol., 25: 341-345
Rogers, J. (2011). Pregnancy planning for women with mobility disabilities. In: J.H.
Stone, M. Blouin (Eds.). International Encyclopedia of Rehabilitation. Accessed
on 6 Feb., 2011 from http://cirrie.buffalo.edu/encyclopedia/en/article/260/#s3
ScoliosisNutty (un). Human spine. Accessed on 11 May, 2011 from
http://www.scoliosisnutty.com/human-spine.php
The Nemours Foundation (1995-2011). Kidneys and urinary tract. Accessed on 12 May
2011 from http://kidshealth.org/parent/general/body_basics/kidneys_urinary.html
VeloNews (2009). The cervical vertebrae are the highest bones in the human spinal
column. Accessed on10 May, 2011 from
http://velonews.competitor.com/2009/08/news/the-cervical-vertebrae-are-thehighest-bones-in-the-human-spinal-column_96425
64
Session 4: Disability-inclusive sexually
transmitted infections (STIs) management
Process
1. Read the specific objectives to the participants
2. Distribute two meta-cards of different colours to each participant. Ask each
person to write on one meta-card what they understand by STIs and in the other
meta-card to write the signs and symptoms of STIs
3. When everybody has finished, display the meta-cards on definition of STIs on
one side and display those on signs and symptoms of STIs on another side in a
gallery
4. Lead a discussion on STIs using participants’ responses and facilitator’s notes
with a focus on points that are not already mentioned by participants
5. Give small cardboard papers of five different colours to each participant. Label
each colour with dimensions of barriers that women with disabilities generally
face in accessing STIs services. Encourage participants to list on each cardboard
paper two barriers that they can think of under the topic
6. Stick cardboard papers on the wall by colours. Review the listed barriers with
participants using the facilitator’s notes on barriers to services
7. Ask participants to mention contents of general STIs prevention counselling. List
their responses in a flip chart
8. Ask participants to describe how they will adapt mentioned points to women and
men with disabilities. Review participants’ responses with highlights from
facilitator’s notes
9. Ask participants to mention prevention methods for STIs. Use their responses
and facilitator’s notes and PowerPoint to facilitate a discussion on the prevention
methods related to women and men with disabilities
10. Use case studies 1 and 2 in the facilitator’s notes to initiate discussion on
syndromic diagnoses and treatment of STIs in women with disabilities. Ask
participants with relevant experience to reflect on each case study and share
their reflections with other participants
65
11. Lead a full discussion on STIs diagnosis and treatment issues related to women
with disabilities
12. Divide participants into five groups (physical, vision, intellectual/mental, hearing
impairments and spinal injury). Ask each group to discuss medication difficulties
that women with a specific impairment are likely to face and how to get around
such. Have each group choose a representative to present in plenary
Objectives

To increase participants’ understanding of issues around accessibility of STIs
services to women and men with disabilities

To equip participants’ with skills necessary to provide STIs prevention services to
women and men with disabilities

To familiarize participants with STIs treatment issues specific to women and men
with disabilities
Time: 3 hours
Materials: Cardboard papers (5 colours), paper and pen,
markers, flip chart, laptop computer, projector
Facilitator’s notes
What are STIs?
STIs are a group of signs and syndromes caused by microorganisms34 that can be
acquired and transmitted by sexual activities.
34
Microorganisms are living things that are too small and cannot be seen by ordinary eyes. Many of them
live inside and outside human beings
66
Signs and symptoms of STIs include:

An usual discharge from the penis or vagina

Rashes, blisters, lumps or sores/wounds around penis or vagina, or sometimes
in the mouth in case of oral sex

Pain in the lower part of abdomen or belly

Pain when passing urine
It is possible to have STIs and
not have any symptoms at all or
symptoms are not there all the
times
Barriers to STIs services experienced by women and men with disabilities

Availability
o Denial of sexual health information and education because it is assumed
that persons with disabilities are asexual, are supposed not to desire sex
or are hypersexual; so have no need for sexuality education, particularly
safer-sex messages
o Lack of healthcare providers knowledgeable about STIs and disabilities –
STIs of women with disabilities may go undiagnosed because symptoms
may be confused with underlying disorders e.g., bladder infection may be
confused with pelvic inflammatory disease in women with spinal injury

Accessibility
o Location of health facility – health facility that is far may not be easily
accessible to persons with disabilities
67
o Transportation – far health facility coupled with lack of transportation or
assistance may make persons with disabilities not to access STI services
o Physical accessibility of health facility – most health facilities are not
physically accessible e.g., lack of ramps, inadequate signage for persons
with sensory impairments may make movement and orientation within the
premises difficult

Accommodation
o High examination bed makes it difficult for persons with physical
disabilities, particularly women to get examined, diagnosed and treated
o Women with poor leg control or spasms may not be able to keep their feet
in stirrup35 for examination. Assistance may be sought from other staff
which could infringe on the privacy of the client
o Information, education and communication methods in accessible formats
are often scarce
o It is rare to meet healthcare providers who can use basic sign language. In
this case, an interpreter is needed and confidentiality is sacrificed

Acceptability
o STIs and disabilities are usually stigmatized in many African societies.
Double standards regarding sexuality in Africa permits men to be sexually
active while women are expected to be passive. In addition, sexuality of
persons with disabilities is often unacceptable and suppressed.
Combination of these may make it difficult for women with disabilities
especially to seek care for STIs
o Persons with disabilities who have to depend on others to go out or attend
clinics may find it difficult to tell a family member why and when they need
to seek STIs services
o Judgmental attitudes of health workers to STIs and discriminatory
attitudes towards sexuality of persons with disabilities is also a barrier to
accessing STIs services
Stirrups are what doctors put clients’ feet in while lying down for pelvic examination or childbirth. The legs are
raised and opened wide apart.
35
68

Affordability
o Diagnosis and treatment of STIs are usually expensive
o Some persons with disabilities, particularly girls and women will not seek
STIs services due to financial reasons
Strategies for prevention and control of STIs

Education and counselling targeting change of sexual behaviours that put
persons at risk of contracting STIs and use of recommended prevention services

Identification of asymptomatically infected persons and of symptomatic persons
unlikely to seek diagnostic and treatment services

Diagnosis, treatment, and counselling of infected persons

Evaluation, treatment, and counselling of sex partners of persons who are
infected with STIs

Pre-exposure vaccination of persons at risk for vaccine-preventable STIs e.g.,
HPV and HBV
STIs/HIV36 prevention counselling
36

Non-judgmental and empathetic prevention counselling targeting sexual history
and risk reduction should be given

Apart from being disability-sensitive, such counselling should take into
consideration client’s culture, language, sex, sexual orientation, and age

Interactive client-centred counselling tailored to personal risks are essential

Women and girls with disabilities presenting with STIs or seeking STIs services
should be assessed for possible previous or current/continuing sexual assaults

Counselling sessions should be tailored to the types of impairments as earlier
described under HIV testing and counselling

Additionally, videos and large-group presentations can be used to provide explicit
information on STIs and instruction to reduce infection transmission (e.g., correct
HIV can also be a STI when it is transmitted through unprotected sexual intercourse
69
condom use), and should be tailored to reach persons with different types of
impairments e.g., sign language interpretation for persons who are deaf, tactile
methods for persons who are blind, easy-to-understand information using simple
language and pictorials for persons with intellectual impairments (see under HIV
prevention)

When assessing risk factors of clients seeking or using STIs services through
counselling, remember that persons with disabilities can also be found among
key population at high risk of STIs such as men that have sex with men,
commercial sex workers, persons who inject drugs. Counselling of persons with
disabilities should therefore target all sexual risk factors common to all persons
Prevention methods include:
Abstinence and avoidance of multiple sex partners



Transmission of STI can be reliably prevented by abstaining from vaginal, oral
and anal sex or by being in a long-term, mutually monogamous relationship with
an uninfected partner. It is thus, advisable for partners embarking on mutually
monogamous sexual relationship to screen for common STIs before initiating
sexual activities. This will help to prevent transmission of previous STIs.
Persons who are being treated for STIs or whose partners are being treated for
STIs (provided that one of them is not infected) should abstain from sex
throughout the treatment period.
Women with disabilities usually experience series of unstable relationships with
increased chances of STIs. Providers should target this during STIs prevention
counselling sessions with women with disabilities and approach the case the
same way s/he would do for persons with multiple sexual partners
Pre-exposure vaccination
Is one of the most effective methods for preventing some STIs like human
papillomavirus (HPV), hepatitis B. Two HPV vaccines – the quadrivalent (Gardasil) and
the bivalent (Cervarix) types – are available for prevention of cervical precancer and
cancer for females between 9 and 26 years of age.
Routine vaccination of girls aged 11-12 years, and catch-up vaccination of females
aged 13-26 years for cervical precancer and cancer (when available) should include
girls and young women with disabilities because:
70

They are sexual beings

Like their non-disabled peers, girls and women with disabilities can decide to be
sexually active at anytime

Girls and women with disabilities are more prone to sexual abuse/violence than
non-disabled ones

Women with disabilities experience high rates of serial sexual relationships
Male condoms

Consistent and correct use of latex male condoms prevents transmission of STIs,
including HIV.

However, some persons have allergy to latex and latex male condoms should be
substituted with male condoms made from polyurethrane or other synthetic
materials. However, they are more expensive and have more chances of
breakage and slippery.

Male condoms made from natural membrane like lamb cecum cannot prevent
against some STIs, including HIV.

Condom use may be challenging for persons with reduced manual dexterity.
However, such persons should be encouraged to explore how to get around such
challenges by adopting alternative ways of putting on male condoms. Persons
that cannot attain condom use through alternative methods but have supportive
partners can achieve consistent and correct condom use with the assistance of
their partners. This implies equipping persons with disabilities with skills to
negotiate condom use

Persons with spina bifida may have higher risk of allergy to latex. Latex male
condoms should be used with caution by these persons and their partners.

The cautious use of latex condoms also applies to persons with spinal injuries or
their partners, particularly if such person is allergic to latex. Such allergies could
trigger ADR/AHR
71
Cervical diaphragms

Use can protect against cervical gonorrhoea, chlamydia, and trichomoniasis

Does not prevent HIV infection

Diaphragms may be difficult to insert for women with disabilities who have poor
manual dexterity

Insertion is also capable of triggering ADR/AHR in women with spinal injuries

Diaphragm use is associated with increased bacterial urinary tract infections,
making it unsuitable for women with spina bifida and spinal injuries
Female condoms

Is effective in preventing bacterial and viral infections, including HIV and
pregnancy

Made from polyurethrane (1st generation) and nitrile (2nd generation), thus
suitable for women with disabilities and others who have allergy to latex

Because it is still costly in most countries, it may not be affordable for some
women with disabilities
Topical microbicides37 and spermicides

Not effective in preventing STIs and HIV transmission e.g., nonoxynol-9 (N-9)38

Topical antiretroviral agents like tenofovir gel has been proven to reduce the
transmission of HIV by 39% in South African women39, although further studies
are still needed to establish effectiveness
37
Microbicides are drugs that can kill living things that cannot be seen by ordinary eyes due to their very
small size. They are referred to as topical microbicides when such drugs are made into creams or tablets
that can be inserted deep into the vagina, near the entrance into the womb
38
Wilkinson D., Tholandi M., Ramjee G., et al. (2002). Nonoxynol-9 spermicide for prevention of vaginally
acquired HIV and other sexually transmitted infections: systematic review and meta-analysis of
randomised controlled trials including more than 5000 women. Lancet Infect Dis. 2:613–617.
39
Karim Q.A., Karim S.S., Frohlich J.A., et al. (2010). Effectiveness and safety of tenofovir gel, an
antiretroviral microbicide, for the prevention of HIV infection in women. Science 329:1168–1174.
72
Non-barrier contraception, surgical sterilization, and hysterectomy

Offer no protection against STIs, including HIV

This is of importance for women with intellectual and/or mental impairments who
are forced to get sterilized. While they may not be pregnant, the likelihood of
STIs, including HIV, is high and can be fatal. When this category of women are
forcefully sterilized, their sexual health may be threatened by unprotected sexual
behaviours and sexual abuse

Sexual health of women with intellectual and/or mental impairments should be
taken care of by giving them sexuality and STIs/HIV prevention education in
formats that are accessible to them. They should also be equipped with skills to
assess and avoid sexual violence
Male circumcision

Has been proven to reduce the transmission of HIV in heterosexual men by 5060%40,41, but should not be substituted for other risk reduction strategies e.g.,
condom use

Males with disabilities should not be denied circumcision due to the myth that
they are asexual
Treatment

Receiving treatment for STIs can prevent transmission to sexual partners

Treatment of HIV infection can also reduce the chance of transmission to sexual
partners. However, the correct and consistent use of condom is the best way to
prevent sexual transmission of HIV
40
Bailey, R.C., Moses, S., Parker, C.B., et al. (2007). Male circumcision for HIV prevention in young men
in Kisumu, Kenya: a randomized trial. Lancet, 369: 643-646
41
Gray, R.H., Kigozi, G., Serwadda, D., et al. Male circumcision for HIV prevention in men in Rakai,
Uganda: a randomized trial. Lancet, 369: 657-666.
73
Partner management

Some men with disabilities could resort to casual, multiple and unprotected sex
to affirm their sexuality and thus get exposed to STIs. Partners of such men are
also at the danger of STIs. However, it may be difficult for such men to inform
their sexual partners in order to avoid further stigmatization.

Partner notification may be difficult for women with disabilities who are in
exploitative and/or unstable relationships. Exploitative and/or unstable
relationships of women with disabilities are characterized by a feeling of
superiority or help by the male partners which place the women at a
disadvantaged position. Such women are less likely to inform their partners of
any infection to prevent further stigmatization and rejection

The woman could be encouraged to offer treatment to her male partner if she
thinks that it is a better alternative than disclosing her infection and/or convincing
the partner to seek screening and treatment

Sexual abuse of women and girls with disabilities are usually perpetrated by
persons who are close to them e.g., caregivers, members of the family, persons
that the women depend on financially. Under these conditions, it may be difficult
to evaluate and treat the infected partners
Case study 1
Betty is a 30 year old woman with intellectual impairment. She had
been sterilized since the age of 16 to prevent her from getting
pregnant. Her mother will not allow her to go out of her sight or that
of her siblings to make sure that she is safe. A few months ago, she
started to complain of stomach pain. Her mother took her to a doctor
who gave her a pain killer. The doctor knew her history of
sterilization. Subsequently, anytime she complains of stomach pain
her mother gives her the same pain reliever. Two weeks ago, her
condition got worse. She was taken to another doctor who referred
her to a gynaecologist. The gynaecologist diagnosed her with pelvic
inflammatory disease. It was later discovered that her brother’s friend
has been sexually abusing her.
74
Case study 2
W/ro. Meskerem has spina bifida. She started to develop a slight
pain in her lower abdomen and painful urination. Previously, she
always had urinary tract infections. After noticing these, she decided
to visit a gynaecologist for assessment. He diagnosed her with
urinary tract infection and was treated for that as usual. This
continued for years until she got married 5 years ago and could not
have a child. She travelled to the US where she decided to visit a
gynaecologist for infertility. She was diagnosed of untreated pelvic
inflammatory disease that had damaged her womb.
STIs medications issues in women and men with disabilities
Women and men with vision impairments

As much as possible, avoid dependence on family members or close persons for
administering medications unless this is the client’s choice

Choose medications according to available guidelines and as much as possible
use the simplest dosage regimens

If possible, put dosage instructions in Braille and stick to the package

Alternatively, design package with dosage instructions that can be distinguished
with tactile methods e.g., use pill boxes or stick something on the package that
indicates the number of times that the medication should be taken daily

Avoid liquid preparations to avoid spillage

In addition, give verbal dosage instructions to the clients
Women and men with hearing impairments

Give dosage instructions in sign language using an interpreter or the provider
that uses basic sign language

Avoid using familiar persons or family members as sign language interpreters
75

Write dosage instructions in lay language e.g., ‘Take 1 tablet in the morning’

Or put dosage instructions in easy-to-understand formats e.g., I – I – I to indicate
1 tablet to be taken three times daily
Women and men with intellectual and/or mental impairments

As much as possible, use the simplest dosage regimen available

Give dosage instructions in easy-to-understand formats

Assess the client’s capacity to understand you using simple language. If she
functions at a high level give the instructions and establish that she understands
the dosage regimen

If she has a support person with her, explain the dosage regimen to the support
person

Consider test-of-improvement and/or test-of-cure revisits to the health facility
Women and men with spinal cord injuries

Loss of sensation may impede the monitoring of medication efficacy by noting
a decrease in discomfort, such clients could be instructed to monitor body
temperature instead
Women and men with other physical disabilities
42

Women and men with limited dexterity must be given medications in
packages that open easily

Cerebro-vascular accidents (stroke) and multiple sclerosis may be associated
with dysphagia42, and clients with these conditions must be prescribed
antibiotics in liquid forms
Dysphagia is difficulty in swallowing
76
Summary
Despite being sexually active and exposed to STIs, women with disabilities hardly can
access STIs prevention, diagnosis and treatment. Disability inclusion has to be put in
place to make STIs services available to women with disabilities. Existing STIs services
can be adapted at minimal cost to suit women with disabilities as well.
Are we together?

Mention the reasons that women and girls with disabilities should be offered preexposure prophylaxis

Persons with what type of impairments should avoid using male condoms and
why?
Key resources
Begley, C., Higgins, A., Lalor, J., Sheerin, F., Alexander, J., Nicholl, H., et al. (2009).
Women with disabilities: barriers and facilitators to accessing services during
pregnancy, childbirth and early motherhood. Prepared for the National Disability
Authority, Ireland
CDC (2010). Sexually transmitted diseases treatment guidelines. Morbidity and
Mortality Weekly Report. 59(RR-12). www.cdc.gov/mmwr
Welner, S.L. (2000). Sexually transmitted infections in women with disabilities –
diagnosis, treatment, and prevention: a review. Sexually Transmitted Diseases
27(5): 272-277
77
Session 5: Disability-inclusive screening for
cancers specific to women
Process
1. Ask participants to read out the specific objective
2. Distribute two cards of different colours to participants. Ask participants to write
what they understand by screening and diagnosis in each of the cards
3. Stick the cards on a board according to colours. Use the responses to facilitate a
discussion on the differences between screening and diagnosis
4. Ask participants to list the benefits and disadvantages of screening. Use
facilitator’s notes and participants responses to discuss the benefits and
disadvantages of screening
5. Ask participants to mention what they would consider when preparing screening
for women with disabilities. Present facilitator’s notes in PowerPoint slides for
discussion
6. Allow participants to brainstorm the following questions:
a. What are the common cancers in women?
b. What factors increase the chance of developing these types of cancers?
7. Write participants’ responses in flip chart. Discuss these responses highlighting
the points in facilitator’s notes
8. Divide participants into two groups. Ask one group to discuss what could be done
before and during breast cancer screening appointments for women with different
disabilities. Ask the second group to discuss what could be done before and
during cervical cancer screening appointment for women with different disabilities
9. Allow each group to present in a plenary
78
Objective

To familiarize participants with skills needed to include women with disabilities in
screening for cancers that are specific to women
Time: 2 hours
Materials: Markers, meta-cards (two different colours), flip chart,
paper and pen, projector, laptop computer
Facilitator’s notes
Difference between screening and diagnosis
Screening is a test offered to an apparently well person with the aim of detecting a
disease early before symptoms emerge and to offer treatment when it is more effective
and less invasive
Diagnosis is a test offered to a person who is already having symptoms of a disease to
ascertain the nature of the disease and offer adequate treatment. The treatment may be
less effective and more invasive
Benefit of screening

Diseases can be detected and treated early and more effectively
Disadvantages

Anxiety about developing the disease

Unnecessary treatments may be offered
79

There is stigma associated with screening for some diseases e.g., HIV infection

A normal result may provide false assurance that will further allow the condition
to deteriorate

An abnormal result increases anxiety until a definite diagnosis is reached, which
may be more invasive and costly
General preparation for screening

Providers should receive disability awareness-training to get familiar with how to
reach women with disabilities

Provide awareness information for screening in formats that are accessible to
women with different kinds of impairments. For example:
o Information in large font (Arial18
point bold)
o Screening information presented in self-explanatory, coloured pictures for
women and men with intellectual impairments
o Posters creating awareness for screening should include sign language
interpretation
o Awareness-raising videos presented with sign language interpretation
o Screening information provided in audiotapes/CDs and Braille
o Provide information regarding availability of accessible procedures and/or
equipment

Provision of screening counselling detailing benefits and disadvantages of
screening in formats accessible to women and men with disabilities

Obtaining consent for screening should be ethical in nature:
o For women with intellectual impairments, it is good to first explore all
possible opportunities to make them understand the information and give
informed consent e.g., having a support person who communicates better
with the client around to improve understanding, healthcare providers
provide simple information and seek consent in a relaxed, non-threatening
manner
80
o If this fails, and the screening is in the best interest of the client, a family
member or caregiver can give consent of behalf of the clients

A preliminary visit to the screening centre may be arranged to get familiar with
the procedure and assess accessibility issues

Special requests to accommodate some flexibility in the procedure may be
granted to women who want such e.g., a woman with intellectual impairments
who is afraid of hospital and/or being in the waiting area could be allowed to stay
outside the premises or within the premises and called on telephone when it is
her turn

Send reminders to clients with disabilities about their screening appointments so
that they could adequately make all necessary arrangements to come
Why the need to focus on breast and cervical cancer in SRH?
Facts about breast cancer43

Breast cancer accounts for 16% of all female cancers; making it the most
common cancer in women worldwide

An estimated 519, 000 women died of breast cancer in 2004

The rate of new breast cancer cases are increasing in Africa

Most of the breast cancer deaths (69%) occur in developing countries due to late
diagnoses
Risk factors for breast cancer44

Family history of breast cancer

Early age at the onset of menstruation

Late age at the onset of menopause
43
WHO (2011). Breast cancer burden. Breast cancer: prevention and control. Accessed on 21 March,
2011 from http://www.who.int/cancer/detection/breastcancer/en/index1.html
44
WHO (2011). Breast cancer risk factors. Breast cancer: prevention and control. Accessed on 21 March,
2011 from http://www.who.int/cancer/detection/breastcancer/en/index2.html
81

Late age at first childbirth

Overweight due to inactivity
Facts about cervical cancer45

Cervical cancer is the second most common cancer in women worldwide

In 2005, over 500,00 new cases of cervical cancer occurred worldwide, of which
over 90% were in developing countries

In 2005, almost 260,000 women died of cervical cancer; about 95% of them in
developing countries

It is estimated that over 1 million women worldwide currently have cervical
cancer, most of whom have not been diagnosed, or have access to treatment
that can cure them or prolong their lives

Cervical cancer is the most common cancer in women in developing countries
like Africa mostly due to limited access to screening for the disease
Risk factors for cervical cancer

Emergence of cervical cancer is closely linked to clinical stage 4 of HV infection
(thus, screening for cervical cancer should also be part of the HIV continuum of
care)

Early age of initiation of sexual activities

Multiple sexual partners
Breast and cervical cancer screening
Before the appointment

Provide breast awareness or cervical cancer awareness sessions in formats
that are accessible to women with all types of impairments
45
WHO (2006). Comprehensive cervical cancer control: a guide to essential practice. Geneva: World
Health Organisation
82

Provide breast and cervical screening information and consent procedures in
accessible formats

Women with disabilities should be allowed to visit the centre to map out
accessibility features and what could work for them e.g., a woman in
wheelchair should check if she could use a seat that is suitable for
mammography instead of her wheelchair; a woman who is deaf may want to
explore the possibility of using and positioning of a sign language interpreter;
women with intellectual impairments may want to visit the screening unit
when there are no activities to get familiar with the environment and meet the
radiographer/health worker etc.

Provide information about breast and cervical cancer screening in a simple
language to women with intellectual impairments
During the appointment

Radiographers/health worker should be familiar with disability issues in relation to
mammography and cervical cancer screening

Radiographers/health worker should be sensitive to behavioural tips that signify
withholding or withdrawal of consent, particularly when dealing with women with
intellectual impairments. If such occurs, it should be documented and clarify if the
client still want to continue or not

The following may indicate withholding or withdrawal of consent:
o The woman becomes uncooperative with the radiographer
o She becomes agitated or upset
o She does not respond to simple requests
o She becomes unduly anxious

Avoid using supporters who are family members unless otherwise specified by
the clients. This could cause inhibition during the screening

Physical examination may stimulate spasms, bowel or bladder emptying or cause
ADR in women with spinal injuries. Lignocaine gel may be used before inserting
a speculum
83

Prepare to spend longer time when screening women with disabilities for breast
and cervical cancers
Summary
Screening is useful in detecting diseases early when they could be more efficiently
treated. However, screening also comes with certain disadvantages such as anxiety
about having the disease and exposure to unnecessary treatment procedures. Like
other healthcare services, women with disabilities experience attitudinal, physical,
transport, and equipment-related barriers to access breast and cervical cancer
screenings. Awareness about disability-related issues could go a long way in the
inclusion of women with disabilities in breast and cervical cancer screenings.
Are we still together?

In what ways is screening different from diagnosis?

What are the benefits and disadvantages of screening?

List key issues to be considered before and during breast cancer screening for
women with disabilities

What issues will you consider as necessary in preparation for and during cervical
cancer screening for women with disabilities?
Key resources
NHSBSP/CSP (2006). Equal access to breast and cervical screening for disabled
women. Cancer Screening Series No 2, March. Sheffield: NHS Cancer
Screening Programmes
Poulos, A.E., Balandin, S., Llewellyn, G., & Dew, A.H. (2006). Women with cerebral
palsy and breast cancer screening by mammography. Archives of Physical and
Medical Rehabilitation, 87(2): 304-307
84
Part 5 – Disability-inclusive HIV prevention
integrated into sexual and reproductive health
services
85
Session 1: Disability-inclusive prevention of
mother-to-child transmission 46 (PMTCT) of HIV
Process
1. Share the session’s objective with the participants
2. Ask participants if they think PMTCT should be disability-inclusive, and why?
3. Ask participants to mention the national strategies for PMTCT
4. Write points raised by participants in flip chart
5. Ask participants to form 3 groups (antenatal, delivery, postnatal). During
antenatal, delivery, postnatal care, participants should discuss the ways they
think that PMTCT can be made accessible to women with disabilities in terms of
communication, keeping appointments, medications.
Objective

To enable trainees to know how to provide disability-inclusive PMTCT of HIV
Time: 2½ hours
Materials: Paper and pen, markers, flip chart, laptop computer,
projector
46
UNAIDS (2011): UNAIDS Terminology Guidelines (January 2011). Accessed on 21 March, 2011 from
http://data.unaids.org/pub/Manual/2008/jc1336_unaids_terminology_guide_en.pdf
Prevention of parent-to-child transmission (PPTCT) of HIV is used instead of prevention of
mother-to-child transmission (PMTCT) by some people to avoid stigmatizing pregnant women and
to encourage male involvement in HIV prevention in children. Ethiopia still uses PMTCT
86
Facilitator’s notes
Prevention of mother-to-child transmission (PMTCT) of HIV is a strategy to ensure that
HIV is not transmitted to infants born to HIV-positive mothers. It involves offering HIV
test to pregnant women, and if they are HIV-positive to give them ARVs during the
pregnancy period to reduce chance of HIV transmission to the infant before, during and
after birth. Newborns of such mothers are also covered by ARVs for a period of time
after birth.
Ethiopia has adopted the WHO/UNICEF/UNAIDS 4-pronged PMTCT strategy as a key
entry point to HIV care for women, men and families. All activities geared towards the
implementation of these strategies should be disability-inclusive. Persons with
disabilities are found among all sectors of the society, including women and pregnant
women. To achieve Ethiopia’s objective of promoting access to HIV prevention and
antiretroviral (ARV) treatment for HIV-positive pregnant women and principles of equity,
upholding of human rights of all persons, and ensuring confidentiality and voluntary
HTC, accessibility of persons with disabilities to relevant services and activities must be
given priority.
Ethiopia’s 4-pronged national strategy for PMTCT

Primary prevention of HIV infection – At all levels (community and all levels of
healthcare), communication for behaviour change to protect HIV infection among
reproductive men and women and other STIs must be made available in
accessible formats for persons with different kinds of impairments. Voluntary
counselling and testing services according to the national HTC must be
accessible to persons with all types of impairments. The following methods
should be adopted to reach persons with disabilities:
o Adequately trained staff should be put in place at all levels to include the
needs of persons with different types of impairments in all services,
programmes, activities, and products
o Illustrations on IEC materials should be representative of persons with
disabilities
o Printed IEC materials should be available in Braille, large fonts (Arial 18
point bold or according to required individual needs), audiotapes/CDs for
persons with vision impairments
87
o To be able to reach persons who are deaf, IEC materials and
programmes/activities meant for the general population must incorporate
Ethiopian sign language (ESL) e.g., posters should be produced in
Amharic and ESL, television programmes should be produced with
superimposed ESL, activities aimed at communicating HIV awareness
should be interpreted in ESL
o IEC materials should be made available in easy-to-understand
pictorials/pictures and simple language in order to reach persons with
intellectual impairments. As occasion might demand, targeted
interventions should be developed for persons with intellectual
impairments e.g., HIV awareness-raising programmes specifically
organized for persons with different mental/cognitive abilities
o IEC materials to address risk reduction practices specific to some
categories of persons with mental impairments e.g., persons who inject
drugs. In addition, HIV awareness-raising programmes should target
persons with mental impairments using highly interactive small groups
o HIV awareness programmes should take place in venues that are
accessible to persons with physical impairments

Prevention of unintended pregnancies among HIV-positive women – family
planning counselling integrated into all potential PMTCT and HTC service sites
should be available in formats accessible to persons with all types of impairments
as described above. Moreover, such family planning counselling should take
different types of impairments into consideration

Treatment, care and support of HIV-positive women, their infants and
families – HIV treatment, care and support services for infected women should
be accessible to women with all forms of impairments. Disability-inclusion should
cut across all HIV-related services meant for women who are infected with HIV,
their infants and families

Prevention of HIV transmission from positive women to their infants
o Like any other women, women with disabilities who are HIV-positive have
the rights to decide whether and when to have children
o To facilitate informed decision to conceive, HIV-positive women with
disabilities who intend to get pregnant should receive adequate
information and education on the risk of MTCT, availability of prevention
88
options, possible effects of HIV on pregnancy outcome, involvement and
screening of partner and follow-up schedule in accessible formats
o The benefits of maintaining good health and nutritional status should be
communicated to such women with disabilities in formats that are
accessible to them, and they should receive necessary care and support
for optimum health
o Such women should be commenced on ARV if they are eligible but not yet
on treatment, and ARVs for PMTCT should be given to those who are not
eligible for ART
o WHO47 recommendations on breastfeeding should be communicated to
women with disabilities who are HIV-positive in accessible formats for
informed choice. Exclusive breastfeeding for the first six months of life is
recommended unless replacement feeding is acceptable, feasible,
affordable, sustainable and safe (AFASS)48
o When replacement feeding is AFASS, it is recommended that all HIVpositive women avoid breastfeeding
o However, breastfeeding mothers of HIV-positive infants or young children
should be strongly encouraged to continue breastfeeding
Registration
Registration of women for antenatal, delivery, and postnatal care should collect
disability-disaggregated data in order to adequately provide accessible services to such
women. Women with disabilities who register for antenatal, delivery and postnatal care
should be asked about their preferred modes of communication of all information and
education at the point of registration. Such should be documented in their files and
made available to all staff who will be involved in service provision, including PMTCT to
those women.
47
WHO (2009). Priority interventions: HIV/AIDS prevention, treatment and care in the health sector.
Geneva: World Health Organization, HIV/AIDS Department.
48
AFASS: Ethiopia no longer uses AFASS. Rather, all HIV-positive women in the country are encouraged
to breastfeed exclusively
89
Communication

All pregnant women, including women with disabilities should be offered opt-out
PIHTC in accessible formats during antenatal, labour and delivery or postnatal
care as the case may be.

Pre-test information given in groups should be disability-sensitive to reach
women with all types of impairment. Based on the women’s demographic data
collected during registration, provision should be made to make all information
and education given in a group to reach women with disabilities who may be part
of the group. This could be done by providing sign language interpretation during
such sessions and by making any printed information/education available in
Braille, audiotapes/CD and/or large font as required.

Similarly, IEC/BCC materials in the clinic should be available in accessible
formats to all women with disabilities

Group information and education should be supplemented with brief individual
sessions during which women with disabilities can clarify issues that are not clear
to them during group sessions.

For women with intellectual impairments, the best approach is individual pre-test
counselling session handled by trained personnel. The procedures listed for HTC
should be followed.

All support tools (antenatal pre- and post-test flipcharts, labour and delivery preand post-test session flipchart, post-delivery pre- and post-test session flipcharts,
antenatal client information brochure) aimed at facilitating communication should
be representative of women with disabilities and adapted to be accessible to
pregnant women with disabilities.
Keeping appointments
Have a system in place to follow-up on pregnant women with intellectual impairments
who are on PMTCT in order to be regular for appointments. Reminder calls could also
be given to women who are blind because it may be difficult to appointments not in
Braille.
90
Medications (ARVs, prophylactic ARVs, opportunistic infections (OI) & malaria
prophylaxis)

Due to transportation and other difficulties related to getting assistance to visit
clinics, arrangements could be made to supply ARVs and other medications in a
way that does not require frequent refills. However, this should be done after
client’s compliance with the medications has been established.

Caution should be taken to closely monitor adherence in pregnant women with
intellectual impairments who are on ARVs for PMTCT and other medications. It is
good if there is a support person who can monitor client’s compliance e.g.,
reminding her when and how to take the medications.

In addition, clients could be asked to bring their medications to the clinic at each
visit, and the health provider asks to know how she has been taking the
medications. Discussions could also be done on the difficulties of adherence and
how that could be tackled.

For HIV-positive pregnant women who are blind, medication packages should be
labelled in Braille for confidentiality and independence. Alternatively, local
adaptations could be used to provide tactile instruction/information on the
packaging e.g., candle wax spots could be put on hard packaging materials to
indicate the number of times that a medication is to be taken in a day.

It is also good to explore the choice of pregnant women who are blind regarding
maintaining confidentiality and identifying a trusted support person. If the client
prefers to have a support person (who could also be her partner) to help with
ART, this should be allowed

The healthcare provider should watch out for drug-drug interactions between
ARVs and antipsychotics, ARVs and other medications (e.g., phenytoin and cotrimoxazole), and ARVs and recreational drugs in HIV-positive women with
mental and intellectual impairments. Co-occurrence of mental and intellectual
impairments is also possible.

All counselling sessions and information and education about infant care
(including choice to breastfeed or not), AIDS disease progression, prevention of
HIV transmission should be given in formats that are accessible to women with
all kinds of impairments.
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Summary
Women and men with disabilities are sexual and capable of reproducing if they desire to
do so. They are at higher risk of contracting HIV infection than non-disabled persons
because of lack of HIV and sexuality education, higher rates of sexual abuse/violence,
unstable serial sexual relationships, poverty, illiteracy and social isolation. Therefore,
efforts geared towards preventing HIV transmission to an unborn child should be
accessible to women and men with disabilities. All the four prongs of PMTCT could and
should be disability-inclusive.
Are we together?

Mention the four prongs of PMTCT

What communication issues should be considered in the provision of PMTCT
services to women with different kinds of impairments?
Key resource
FHAPCO (2007). Guidelines for prevention of mother-to-child transmission of HIV in
Ethiopia. Addis Ababa: Federal HIV/AIDS Prevention and Control Office, Federal
Ministry of Health
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Session 2: Disability-inclusive post-exposure
prophylaxis (PEP)
Process
1. Share the session’s objectives with the participants
2. Ask participants to discuss the reason why PEP should be accessible to persons
with disabilities
3. Ask participants to list the steps (in order) in clinical management of PEP.
Encourage those with work experience on PEP to share with others
4. Allow a participant to write the responses in flipchart
5. Lead a discussion on how to ensure disability inclusion at each step in clinical
management of PEP
Objective

To enable trainees understand procedures for accessible providing postexposure prophylaxis services
Time: 2½ hours
Materials: Paper and pen, markers, flip chart, laptop computer,
projector
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Facilitator’s notes
PEP of HIV refers to the set of services that are provided to manage the specific
aspects of exposure to HIV and to help prevent HIV infection in a person exposed to the
risk of getting infected by HIV49. There could be two types of exposure to HIV –
occupational (exposure in the course of one’s work) and non-occupational (non-work
related) exposures. This session will focus generally on post-exposure prophylaxis, but
with more emphasis on exposure through sexual assaults.
Why PEP for persons with disabilities?

PEP should be accessible to persons with disabilities because women and girls
with disabilities are often targeted for sexual assault/violence due to disabilityrelated factors as earlier discussed

In addition, persons with disabilities are represented among all categories of
persons. They can be found on occupations that expose to HIV infection or
belong to groups that may predispose to accidental HIV exposures
Clinical management of PEP
Generally, this involves the following:

Establishing eligibility for PEP

Counselling and obtaining informed consent

Prescribing and dispensing PEP medication

Conducting laboratory evaluation

Ensuring record-keeping, and

Providing follow-up and support
49
WHO (2007). Post-exposure prophylaxis to prevent HIV infection: joint WHO/ILO guidelines on postexposure prophylaxis (PEP) to prevent HIV infection
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Establishing eligibility for PEP
This involves assessing the timing of the potential exposure, the person’s HIV status,
the nature and risk of the exposure, and the HIV status of the source of the potential
exposure.
Timing of the potential exposure: PEP has been shown to be ineffective when given
more than 72 hours after the potential exposure. Persons with disabilities should be
given priority by being attended to immediately they arrive at the health facilities. In
cases of sexually assaulted persons with disabilities, full forensic investigation should
not be a pre-condition for initiating PEP. Persons with disabilities may not be able to
access services promptly or lack capacity to consent to PEP or HIV test due to
disability-related difficulties. For example,

Persons with physical or vision impairments may present late due to lack of
assistance and/or transportation. It may also be difficult and time-consuming for
them to move from one point to another within the facility, thus spending more
time than necessary to go through all the protocols. If such persons still present
within 72 hours, HIV test result should not be a strict condition for initiating PEP

It may take a longer time to obtain consent for PEP and/or HIV test from persons
with mental or intellectual impairments, or may temporarily or otherwise
incapable of giving consents. There should not be further delay by awaiting
consents for PEP to be initiated if it is in the best interest of the clients

It is also possible that, it takes a longer time to communicate with clients with
hearing or speech impairments. The health provider should use his/her discretion
to initiate PEP without unnecessary delay that may arise in waiting for HIV test
result
Pre-existing HIV infection: PEP is meant for persons who are HIV negative, but HTC
should not be a pre-condition for initiating PEP. As such, persons with disabilities whose
HIV status cannot be established before initiation of PEP should still be counselled and
offered HTC, if possible on the same day. This is necessary because it may be difficult
for some persons with disabilities to keep frequent appointments due to lack of
assistance and transportation. If found to be HIV-positive, they should be counselled
and given information on how to prevent further transmission in formats that are
accessible to them as highlighted under HTC.
Assessment of the exposure to HIV: Assessment of the nature of the exposure to
determine the risk of transmission and hence eligibility for PEP of persons with
disabilities should be undertaken by providers who are trained to provide such services
to persons with different kinds of impairments or support persons who have good
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understanding of such impairments or of the particular clients. For example, persons
with intellectual impairments are often judged as unreliable witnesses in cases of sexual
assault. And for this particular reason, they are often targeted for sexual assault. So, the
provider should be cautious in dismissing clients with intellectual impairments on the
ground of insufficient evidence of sexual abuse.
Assessment of the source’s HIV status: Identifying and obtaining informed consent to
be tested from the perpetrators of sexual assault of persons with disabilities may be
difficult. A person who is blind may not be able to identify the perpetrator. A survivour
with intellectual impairment may not be believed even if she is able to identify the
perpetrator. In addition, perpetrators of rape of persons with disabilities are often known
persons or family members, in which case they may not be identified or the case may
not be reported to hold the perpetrators responsible for the offence.
Additionally, when the HIV status of the source cannot be established it should not be
taken for granted that the source is not likely to be HIV-positive even if HIV prevalence
in the area is low. In some African countries, the myths of asexuality and ‘virgin
cleansing’ are partially responsible for rape of women and girls with disabilities. In
cultures where it is believed that having sex with a virgin can cure one of HIV infection,
persons with disabilities are targeted for rape because they are believed to be asexual,
thus likely to be virgins. Therefore, the likelihood that the perpetrators are HIV-positive
could be relatively high.
Knowing the HIV status of the perpetrator should not be a condition for initiating PEP for
persons with disabilities once it is established that the person was raped.
Counselling for PEP
Counselling should be offered in accessible formats as specified for HTC. If the client is
not capable of giving consent for HIV and/or PEP, family member/guardian or
caregivers can give consent instead. Counselling for PEP also includes information
about the importance of adherence and the possibility of side-effects. Persons on PEP
must understand the dosage regimen. The counselling should also focus on assessing
their understanding. In addition, consent for collecting forensic specimens must be
communicated to the clients who are sexually assaulted during PEP counselling.
Persons with vision impairments: Dosing instructions for persons who are blind
should be affixed to the medication packages in Braille. Alternative local adaptations
based on tactile method could be explored. For persons with low vision, large fonts
should be used in giving dosing instructions.
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Persons with hearing impairments: Dosing instructions for persons who are deaf
should be given in sign language by the provider, as well as printed on the medication
package. The provider should clarify whether the clients understand the dosage
regimen or not when dealing with persons who are deaf or partially-hearing.
Persons with intellectual impairments: Dosing instructions should be explained to the
clients, and understanding assessed. It is also important to have a support person
(family member/guardian or caregiver) who could help in monitoring the appropriate use
of the medications.
Persons with mental impairments: Dosage regimen should be explained to the clients
verbally, as well as printed on the medication package. Provider should assess the
understanding of the clients.
Pregnancy testing and emergency contraception
Pregnancy test should be performed on all women with disabilities of childbearing age
who have been sexually assaulted. However, this should not be a condition for starting
PEP. A second pregnancy test should be offered a month after a negative initial one.
Women with disabilities who are pregnant should still be offered PEP, while those that
are not pregnant should be offered emergency contraceptives.
Breastfeeding mothers should be counselled in accessible formats of the possibility of
transmission of HIV to their infants in case they become HIV-positive as a result of the
exposure. They should be counselled appropriately on exclusive breastfeeding, and
alternative infant feeding when such is acceptable, feasible, affordable and sustainable.
Prescribing and dispensing post-exposure prophylaxis medications
In the absence of suspected drug resistance, two-drug (preferably in one tablet)
regimen is more appropriate for persons with disabilities, particularly those who are
likely to be on other medications related to their impairments e.g., persons with mental
and/or intellectual impairments. This will facilitate adherence and effectiveness by
reducing side-effects, interactions between drugs (ARVs and antipsychotics) and taking
of too many drugs at a time.
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Dispensing strategies
The first dose of PEP should be given without waiting for HTC or HIV test results of the
source person, or full forensic examination in the case of sexual assault or rape. Starter
pack of PEP consisting of doses enough for 5-7 days is ideal for persons with
disabilities considering the difficulties (assistance and transportation) they often face in
keeping frequent appointments.
Maintenance doses could be given by assessing environmental, communication and
physical barriers of clients with disabilities and adherence to medications. For example:
Persons with vision, hearing or physical impairments: who show evidence of
understanding and adherence to the starter doses but expressed potential difficulties in
accessing services could be given the remaining doses for 3 weeks if s/he doesn’t have
any other reasons to come to the clinic. In cases where it is obvious that the person will
not be able to come to the clinic after the starter doses for 5-7 days, it is advisable to
dispense for 28 days at once. The clients’ contact details could be obtained (if available)
so that s/he could be followed up and/or give provider’s contact telephone number to
the clients to call in case of any problem. Mobile telephone contact detail is more
appropriate for persons with hearing impairments so that they can make use of the sms
feature.
Persons with mental and/or intellectual impairments: if there is enough evidence
that the starter doses were adhered to, especially in case of a support person
monitoring the clients, the remaining doses for 3 weeks could be dispensed all at once if
there is no other reasons for clinic visits. If adherence is in doubt or the client has other
reasons for clinic visits, doses could be given in stages to provide for follow-up.
Laboratory evaluation
HIV testing should still be encouraged for persons with disabilities who are receiving
PEP without HIV test to reduce drug wastage and side-effects, and to guide against
possible ARV resistance in case the person is infected with HIV.
Record-keeping
Disability-disaggregated data should be collected from persons accessing PEP services
at all levels. This is necessary to identify trends and gaps in services in reaching
persons with disabilities, to make comparisons across services and over time, to guide
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future service planning and resource allocation regarding disability-inclusion, to support
operational studies and to demonstrate accountability to donors.
Referral

Women and girls with disabilities who seek medical assistance first, after sexual
violence should be referred to the police after PEP has been administered

Women and girls with disabilities may not be aware of the procedures. So,
forensic examination should be carried out before referring to police so that
forensic evidences do not disappear

If and when needed, women and girls with disabilities who are rape survivours
should be referred to safety services, particularly if the perpetrator is somebody
that the victim depends on for care or financially
Follow-up and support
Clinical follow-up: Persons with disabilities on PEP should be offered follow-up and
clinical monitoring to monitor adherence and to identify and manage side-effects and
interactions between drugs. This is of particular importance for persons with mental
and/or intellectual impairments. This may be waived for other persons with disabilities if
they find it extremely difficult to turn up for appointments. All accessible communication
formats should be considered to ensure adequate clinical follow-up.
Additionally, in cases of rape, clinical signs and symptoms of STIs should be
investigated and treated. STIs prophylaxis and PEP for hepatitis B infection should also
be discussed.
Follow-up HIV testing: Persons with disabilities potentially exposed to HIV should be
offered HTC in accessible formats 3-6 months after exposure
Follow-up counselling: Persons with disabilities who have received PEP should be
offered psychosocial support and/or further treatment assistance in accessible formats,
as and when required. Such clients should be given information on accessible support
services that are available and how to access them. It is therefore important for health
service providers to have information about and network with such services and to be
able to provide information in accessible formats. Service providers should be careful
not to force referral services on rape survivours with disabilities but rather give them
enough information to make their choices of referral services
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Summary
PEP should be accessible to persons with disabilities, particularly women and girls.
Women and girls with disabilities stand a higher risk of being raped with the chances of
exposure to HIV and other STIs. Clinical management of PEP should be disabilityspecific to be able to reach all women and girls with disabilities.
Are we together?

List the components of the clinical management of PEP

Describe what you would do to ensure that PEP is adhered to by women and
girls with:
o Intellectual and/or mental impairments
o Physical impairments
o Sensory impairments
Key resource
WHO (2007). Post-exposure prophylaxis to prevent HIV infection: joint WHO/ILO
guidelines on post-exposure prophylaxis (PEP) to prevent HIV infection
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About Handicap International
Handicap International is an independent and impartial international aid organisation
working in situations of poverty and exclusion, conflict and disaster. We work alongside
persons with disabilities and vulnerable populations, taking action and bearing witness
in order to respond to their essential needs, improve their living conditions and promote
respect for their dignity and fundamental rights.
Handicap International was the recipient of the 2011 Hilton Humanitarian Prize as the
largest non-governmental organisation providing assistance and advocacy for persons
with disabilities
Handicap International was awarded the Nobel Peace Prize in 1997 as a co-founder of
the International Campaign to Ban Landmines
For more information, please visit: www.handicap-international.org
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