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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”


     

MAPPING OF EXPERIENCES OF ACCESS TO CARE, TREATMENT AND SUPPORT – KENYA (2006) 

Report prepared by Ericah Webi, ICW Project Officer in Kenya with support from ICW’s International Support Office.

http://www.icw.org/files/Kenya%20ACTS%20mapping.doc
Project description

WHO 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.

Project methodology

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.

Findings

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 tactics.
  • 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 based care.

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 areas?
  • 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 behaviour

·         The discussions 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 dose themselves.

·         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 their in-laws.

·         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.

·         Some participants 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.

·         Health seeking 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 Relief (PEPFAR)[1] 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 one.

STIs and other sexual health services

No specialised STI clinics. Treatment for STIs available at normal government clinics and hospitals

Abortion

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.

Sterilisation

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. 

Assisted conception

Participants had not heard of assisted conception services being available

Family planning

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.

Healthy motherhood

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

·         More sex 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.

·         Educating of 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.

·         Treatment sites 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.

·         Having public 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 facilities.

·         Increased education on sexual and reproductive health issues in VCT centres.

Prevention of mother-to-child transmission (PMTCT)

·         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.

·         Increase the number of Community Health Workers.

·         Training put in place for women to improve their skills.

·         Income generating activities.

Sexual and reproductive health services

·         Sexual and 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.

·         More education should be provided for women to access services, for example, women should know the importance of having regular pap smears and mammograms.

Other

·         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.

 

[1] ICW does not support PEPFAR funding conditionalities, for example, those constraining work around access to safe abortion, harm reduction and sex work.  For more on general concerns about PEPFAR see www.pepfarwatch.org