MAPPING OF EXPERIENCES OF ACCESS
TO CARE, TREATMENT AND SUPPORT –
prepared by Ericah Webi, ICW Project Officer in Kenya with
support from ICW’s International Support Office.
supported ICW to map positive women's experiences of access to
care and treatment in three countries - Namibia, Kenya and
Tanzania. The findings will contribute to advocacy for increased
political support and resources to address gendered barriers to
care, treatment and support. The project complements a mapping
and database of civil society organizations (CSOs) providing
treatment by the French consortium - SIDACTION.
The research was carried out in Homabay (rural) and Kibera
community (urban) involving women and men living with HIV and
AIDS (13th December 2005 - 31st January
2006). Data was gathered through questionnaires and focus group
discussions (FGDs). Women who participated in the focus group
discussions were aged between 22 – 45 years old and in total 100
people took part in the project, including questionnaire
respondents. The service providers in both sites were of varied
age group (28-45 years) and both female and male service
providers participated in the focus group discussions.
Results from the mixed sex and service provider focus groups are
presented here but the main emphasis is on the results from the
women only focus groups.
1. Information and knowledge of rights, services and treatments
The women living with HIV felt that they did not get
adequate information on the following areas: treatment for
opportunistic infections, adherence, treatment for side
effects, planning for conception, pregnancy, ante-natal
care, post-partum care for mother and child, sexual health
issues and services, abortion, violence against women (VAW).
The women believe it is their right to get treatment;
although the medical personnel do not always give them
information. Anti-retrovirals (ARVs) are not always given in
time to ensure regular adherence. It is believed the medics
at the Government hospitals adopt deliberate delaying
Women and young people appear to be more active in
campaigning and raising awareness on issues around HIV and
AIDS than men, including consciousness raising around
transmission, through church activities, home and community
The women had a number of concerns about treatment:
They believe that nutrition is essential for people living
with HIV/AIDS especially while on ARVs yet they do not get
any assistance with this. They asked the question; is it
their right to get good nutrition while on medication?
How will the government assist people in rural areas for
whom services are not as easily available as in the urban
Why does the government charge for services and treatment
when there is funding towards this programme?
What is the government doing towards providing free
treatment for HIV positive people?
Some women wanted to know how their participation in this
mapping would benefit them
2. Health seeking
revealed a greater tendency for women to test and disclose
earlier than men. One consequence of this is that the general
health of HIV positive women is better than that of positive men
as they are able to seek treatment earlier. There would seem to
be a higher mortality rate among men, who may not test or seek
treatment until they are already very sick.
Women’s health once on medication could be compromised by
sharing medications. Women in rural areas reported instances
of partners forcing the women to share medication even
before men had been tested for HIV. They did not want to go
the hospital and be diagnosed and be put on ARVs due to
stigma and discrimination and talk among community members.
They preferred that their wives get the medicines and that
they share them. However, none of the women in
the urban area had shared their medication with a member of
their family. They knew the importance of taking the whole
All the FGD
participants felt aware of how HIV is transmitted and were not
overly concerned with the possibility of infection or
re-infection. Most of the service providers felt fully aware of
how the disease is transmitted, and did not feel that contact
with clients was a cause for concern. Most of the positive women
present in the discussion were not really afraid of re-infection
since most of them use condoms or they have abstained. Among the
FGD participants were widows who have refused to be inherited by
Most hospitals are
cautious of how they handle all clients therefore making sure
that they dispose of needles well and ensuring they wear gloves
when attending to any patient.
living with HIV reported that family members are sometimes
afraid of sharing utensils with them especially when one is
suffering from tuberculosis (TB) as well.
behavior by men included good hygiene and good nutrition.
However, they were constrained due to the economic disadvantage.
They wanted to know more about good nutrition and ARVs.
The majority of
women do not have a sustainable source of income; the levels of
poverty are higher in the rural areas, and even in urban areas
among persons who do not have consistent income. Most members of
the FGDs feel that a balanced diet is an expensive diet and they
feel they are not eating well.
3. Access to Treatment
Treatment is provided free of charge by government hospitals.
However there is an enrolment fee of 100 Kenyan shillings for
the treatment programme. This is a prohibitive sum for some
members of society. Treatment is also provided completely free
of charge by a number of The President's Emergency Plan for AIDS
funded programmes throughout the country, though enrolment in
these programmes is now difficult as many of them are full.
While anti-retrovirals are free in government hospitals, most
treatments for opportunistic infections (OIs) and other
diagnostic tests are not. These are all free in the PEPFAR
programmes. There was a perception among participants that the
government hospitals were under strain, and that this resulted
in delaying tactics on the part of medics when treatment uptake
was sought, and that there was a question over the
sustainability of treatment services. Treatment for TB was free
under both PEPFAR-funded and government schemes. Most of the
participants had been treated for TB, and some were on ARVs.
Most of these were on 1st line treatment; one was on
2nd line. There was little knowledge about what 1st
and 2nd line treatment means. There are no clinics
that deal specifically with sexual health, and treatment for
STIs takes place in general hospitals and clinics. A few people
accessed the Marie Stopes and the family planning clinics that
provide services for a fee. In the rural areas there are no such
clinics available. Women had experienced more problems in
accessing services as their partners often refused them
permission to seek treatment for fear that health providers
would want them to go for treatment as well.
On the whole ARV uptake is recommended once a person’s CD4 count
drops below 200. However, participants from both the men’s and
the women’s FGD reported delays in uptake, even when a person
was in urgent need. There was a sense of mistrust in the
government’s ability to provide for all those who needed
treatment. There was also resentment among some of the
participants that some had to pay for treatments while others
had free access.
Barriers to treatment
Poverty is the main barrier to accessing treatment in Kenya.
Raising as little as Kshs 100 (1.3 USD) was difficult for most
people since most of them survive on an income of less than a
dollar (ksh.78) a day. This is the amount of money required by
clients for the government heath services before being put on
the ART programme and individuals have to pay for a CD4 count, a
full haemogram and a liver function test. Poverty also means
that people experience difficulty in paying for transport to get
to services, especially when travelling from rural areas where
distances to the nearest clinic or hospital are further and
infrastructure poorer. People residing in slum areas of Nairobi
and rural areas experienced the greatest difficulties in
accessing treatment. Poverty also impacts on people’s ability to
access good nutrition, which can also be a major barrier to
treatment compliance. There were concerns among the participants
too about the sustainability of supply. One client who required
2nd line medication was told that it could not be
supplied to her local hospital due to lack of demand for the
drug, so she had to travel all the way to Nairobi for it.
A further barrier to treatment is (mis-)information regarding
the rights of people living with HIV, medical advice and
guidelines, and the services available to them. Gaps in service
provision will also be discussed further on. Again, it was
perceived that PEPFAR-funded programmes provided clients with
more comprehensive and accurate information on treatment and
care options than government services.
4. Involvement in services
Most of the women interviewed are involved in providing care and
support activities in their community especially in terms of
support such as home based care, home visits and peer
counselling. This work is done on a voluntary basis, and does
not provide a source of income. They would like to participate
in income generating activities (IGAs) that would enable them
have a family income but there is no capital to start up these
activities. Among peers they have what is called a ‘merry
go-round’. They contribute some money which they give to one
another in turns.
5. Experience of care and support services
Stigma and discrimination are the main barriers to receiving
care and support from the family, community and workplace. Some
do receive care and support from these sources, but others have
experienced discrimination in the workplace leading to loss of
employment (and therefore income), and many do not feel safe
disclosing in any of these environments. Women also reported
experiencing stigma and discrimination in health services. The
most effective source of care and support as well as information
on treatment, is support groups.
Other sources of care and support were NGOs and faith-based
organisations (FBOs) within the community, and also women (often
positive themselves) providing care-in-the-community, home based
care, counselling and working with orphans and vulnerable
children (OVCs), etc. Few employers other than NGOs were
reported as having any sort of workplace policy that helped
provide or pay for treatment and health care for its employees.
Financial support for health care, including treatment, was
likely to come from a person’s own money, the family, NGOs, FBOs/churches
and some support groups.
6. Sexual and reproductive health
Sexual health services tend to be combined with general health
services rather than being allocated separate resources. Most of
the following services could be accessed (if at all) within an
hour’s travelling time from clients’ home. Other than family
planning and pap smears, however, few participants reported
having accessed any of the services that are available (see
table). Some participants, however, were not aware of needing to
have regular pap smears, and weren’t aware where to go to have
STIs and other sexual health services
No specialised STI clinics. Treatment for STIs available
at normal government clinics and hospitals
Illegal (though illegal abortions can be accessed).
Women seeking advice on unwanted pregnancies probably
would not reveal their HIV status and would be
counselled to have the child.
Did not arise as a specific issue.
Prevention of mother-to-child transmission (PMTCT)
PMTCT services were experienced differently by urban and
rural women – those in urban areas reported good
services with all those who had used them having had
HIV-negative children; in rural areas women found the
service harder to access; it was perceived as something
only for women who discovered their seropositive status
once they had become pregnant.
Participants had not heard of assisted conception
services being available
Services are available and accessible though
participants lacked adequate information regarding
family planning, especially when on ARV treatment.
Participants were not clear whether they could take the
pill at the same time as ARVs; some believed that other
forms of contraception were recommended, such as the
coil, or Norplant. The majority of participants either
used condoms or abstained from sex.
Services not generally offered
Pap smears / breast examination
Few women have heard of pap smears and breast
examinations and consequently many do not access them at
all. However in rural areas there are poster campaigns
to try to raise awareness of the importance of breast-
and cervical cancer screening
Women are largely unaware of their sexual and reproductive
health rights as women living with HIV and AIDS, and therefore
are unlikely to seek out or demand services. This situation is
compounded by negative attitudes within the health service
sector. In government hospitals, treatment for opportunistic
infections has to be paid for by the client. In the private
sector and PEPFAR funded services, treatments are seen as more
accessible, and staff non-discriminatory
The men’s focus group expressed
concern about the risk of infection in sero-discordant couples
who want to have children. They felt that there was a lack of
information on this issue. The facilitator explained to the
group that PEPFAR-funded services run special programmes for
discordant couples. They wanted to know whether these
programmes could support OVCs as well.
7. Recommendations for services:
Information, awareness and existence of services
education, including in voluntary counseling and testing (VCT)
centres, and for young people. Some people feel that more
attention should be given to the youth on abstinence, or
delaying the on-set of sexual relationships as well as educating
young people on safe sex practices.
caregivers should also be done on a very wide scale so that all
HIV positive women, men and children are well taken care of
right where they are.
should be publicized and should expand because not everyone
knows where to go to when they require drug, especially if they
are migrants, one should know the nearest treatment site.
Education on ARVs
and their side effects should reach all levels so that one can
feel safe and make informed choices about treatment therapy.
talks and publications evenly distributed on HIV/AIDS rather
than having a few bill boards in areas with good infrastructure
and with access to electricity only. Involving the provincial
and district administration in discussions and campaigns.
Availability and location of services
Improvements in transport.
Bring health services nearer to villages.
More clinics specialising in HIV and AIDS.
Mobile clinic programmes to bring services to people who
otherwise are unable to reach them.
Programmes designed specifically for disabled women and men, for
whom there are currently no services available. Home based
services for disabled people who cannot reach community
Increased education on sexual and reproductive health issues in
Prevention of mother-to-child
Need to involve
men in PMTCT. Programmes are currently targeting women and have
been adapted to be more suitable to women through staffing and
opening times. Efforts are now being made to involve male
partners to contribute to the mother’s psychological and
emotional preparation as she is put on treatment. Couples
enrolled on PMTCT programmes adhered to treatment better than
those who enrolled individually. Service providers maintained
that a lot of counseling is done to ensure continuity of care.
Community/Home based care
More training and
financial support for women involved in home based care and
community based support programmes.
number of Community Health Workers.
Training put in
place for women to improve their skills.
Sexual and reproductive health
reproductive health services need to be introduced in public and
private health facilities. Most women do not know their rights
to sexual and reproductive health and the services are not
provided in the first place.
should be provided for women to access services, for example,
women should know the importance of having regular pap smears
More programmes/support to be availed in the areas of: good
nutrition, treatment literacy, VCT services.
More information should be circulated on traditional and
cultural behaviours and practices which are barriers to getting
treatment, care and support.
Scale up advocacy.