Reasons for unsatisfactory acceptance of antiretroviral treatment in the urban Kibera slum, Kenya

Abstract

The aim of this study was to explore why patients in the urban Kibera slum, Nairobi, Kenya, offered free antiretroviral treatment (ART) at the Médecins Sans Frontièrs (MSF) clinic, choose not to be treated despite signs of AIDS. Qualitative semi-structured interviews were conducted with 26 patients, 9 men and 17 women. Six main reasons emerged for not accepting ART: a) fear of taking medication on an empty stomach due to lack of food; b) fear that side-effects associated with ART would make one more ill; c) fear of disclosure and its possible negative repercussions; d) concern for continuity of treatment and care; e) conflicting information from religious leaders and community, and seeking alternative care (e.g. traditional medicine); f) illiteracy making patients unable to understand the information given by health workers.

Introduction

The Kibera slum area in Nairobi, Kenya, constitutes a high-risk environment for HIV due to poverty, unemployment, substance abuse and a high frequency of women being involved in commercial sex (Gulis, 2004). Accurate data on the prevalence of HIV/AIDS in Kibera are lacking but it is estimated to be higher than the 9.1% prevalence reported from other areas of urban Nairobi (Central Bureau of Statistics Nairobi, 2003).

Since 2003, Médecins Sans Frontières (MSF) has offered ART free of charge to all eligible HIV-positive individuals through three primary health care facilities in Kibera in collaboration with the Kenyan Ministry of Health (MoH). Routine programme analysis revealed that a considerable proportion of eligible HIV positive individuals in need and offered ART free of charge were not taking up the offer.We conducted a qualitative study, using in-depth interviews, in the urban slum setting of Kibera to explore the reasons why HIV-positive individuals in need of ART choose not to take up the offer.

Methods

ART and study eligibility

All HIV-positive individuals were considered eligible for ART if they were in WHO clinical stage 4 irrespective of CD4 counts, WHO stage 3 with a CD4 count <350 cells/ul or stage 2 with a CD4 count <200 cells/ul. Individuals who were considered eligible for ART but did not take up the offer were considered eligible to participate in this study.

Interview procedures, data collection and analysis

The interviewees were purposively selected from a list of ART eligible individuals (who opted not to take up ART) to represent different areas in Kibera, different ethnic groups, sexes and age groups. They had all met a social worker earlier and given their approval of a home visit. Semi-structured audio-recorded face-to-face interviews were carried out with a total of 26 people, 9 men and 17 women, aged between 23 and 55 years. Data were collected through in-depth face-to-face interviews (duration 30–60 minutes) by a medical doctor together with a female interpreter from Nairobi, who speaks English, Swahili and Kikuyo and is familiar with the context of Kibera. Data was translated, transcribed and analysed using content analysis, by the authors. Ethical approval was obtained by the MSF Ethical Board (ERB) and from the Kenyan Ministry of health (MoH)

Results

There were a total of 69 people considered eligible for interviews and whom we tried to contact. Eighteen had gone to another NGO and could not be traced, 9 had switched to a traditional doctor, 9 had reported migrating up country, 3 had died and 4 did not want to be interviewed. The 26 remaining patients all accepted to be interviewed (Table I). The only major group not accepting to participate was the Muslim community in Kibera, from which, for unclear reasons, nobody wanted to be interviewed despite being approached twice and invited for interview.

Table I. Socio-demographic facts.

Pat number	Sex	Age	Ethnic group	Disclosed to at least one person	Status
1	m	27	Luo	y	Married
2	m	26	Luo	y	Married
3	f	33	Kikuyu	y	Single
4	f	38	Luo	y	Separated
5	f	36	Luo	y	Widow
6	f	36	Kisii	n	Single
7	m	39	Kamba	y	Married
8	m	50	Luhya	y	Married
9	m	35	Luo	n	Married
10	f	46	Luo	n	Widow
11	f	34	Luhya	n	Widow
12	f	32	Kamba	y	Separated
13	m	37	Kamba	y	Married
14	f	24	Kamba	y	Married
15	f	24	Luo	y	Married
16	f	27	Luo	y	Married
17	f	38	Luo	y	Widow
18	m	29	Kalenjini	y	Single
19	f	26	Kikuyu	y	Single
20	m	32	Kisii	y	Separated
21	f	28	Luhya	y	Separated
22	m	55	Kisii	y	Married
23	f	23	Luo	n	Single
24	f	35	Luo	y	Widow
25	f	40	Kamba	y	Married
26	f	25	Kamba	y	Married

Reasons for not accepting ART

The categories emerging from the qualitative analysis were: a) fear of taking medication on an empty stomach due to lack of food; b) fear that side-effects associated with ART would make one more ill; c) fear of disclosure and its possible negative repercussions; d) concern for continuity of treatment and care; e) conflicting information from religious leaders and community, and seeking alternative care (e.g. traditional medicine); f) illiteracy making patients unable to understand the information given by health workers (Table II).

Table II. Categories and quotes.

Category	Quote
Fear of taking medication on an empty stomach due to lack of food	I am not saying that I cannot use the treatment. In fact I would want to live longer, but sometimes I do not have a job. Other times I stay for two days without any food. That makes me afraid of using the medication (33-year-old woman)
Fear that side effects associated with ART would make one more ill	… I had heard my colleagues at the support group saying that once one started using the ART, one would get a rash, have diarrhoea and have severe headaches or even vomit. Therefore I thought it would be difficult for me to start using the ART (55-year-old man)
Fear of disclosure and its possible negative repercussions	They will even tell their children not to play with my children. They will abuse my children. I have seen it happen to other people. The people who are HIV positive are not accepted in the society (22-year-old female)
Concern for continuity of treatment and care	If we decide to go to the country side, we do not have anything there (50-year old man)
Conflicting information from religious leaders and community, and seeking alternative care (e.g. traditional medicine)	One should believe in God. If one does not believe in God, even if one takes medication, it will not be of any use. One has to use both God and the medication (34-year old woman)
Illiteracy making patients unable to understand the information given by health workers	The only problem is that they do not have time to explain some of the information. Some people do not know how to read, yet they give us some pamphlets to read … (35-year-old female).

Discussion

Poverty dominates people's life in urban slums regardless of HIV status. Lack of food and a perceived risk associated with taking ART on an empty stomach was the most important obstacle for accepting ART. As most other ART programmes, MSF/MOH clinics in Kibera did not include food provision at the time of study, but patients were counselled to eat well to avoid side effects and for the drugs to be efficient. Some patients who lacked food at home thus wrongly interpreted this information as ‘No food = No ART’. Addressing the issue of food security and understanding the depth of poverty in settings where ART programmes are introduced remains critical for successful initiation of sustainable ART.

The majority of the patients were afraid of the side effects associated with the ART. Many misinterpret the death of family members on ART as caused by the medication rather than opportunistic infections/AIDS. Coping with the initial side effects of ART requires a well-informed client, which is more challenging to achieve in contexts where illiteracy and lack of health staff is a reality (Stevens et al., 2004). Information about side effects was given by health workers and by handing out pamphlets that were copied from earlier ART-programmes in South Africa. These pamphlets had an over-emphasis on potential side effects, which might have induced fear in some patients. Most patients interviewed had also none or very basic education and were too embarrassed to reveal their illiteracy or ask for help. Information linked to ART in these settings needs to be well adapted to the local socio-cultural context and communicated through more appropriate channels e.g. through peers informing each other on side effects and how to cope with them (Bangsberg, 2006; Stenson et al., 2005). Studies from India and high income countries have shown that social support, education and trust in the drugs are important factors for disclosure, preparedness and adherence to treatment (Kumarasamy et al., 2005; Remien et al., 2003; Siegel & Schrimshaw, 2005). In a resource-poor context like Kibera, many are diagnosed at a late stage and are in immediate need of treatment (Stringer et al., 2006). They are forced to accept their HIV diagnosis at the same time as they must reveal their status and cope with the idea of life-long treatment. This is probably an important reason for delayed uptake or non-acceptance of ART. Despite the fact that many of the interviewees knew that they needed these drugs to survive, they lacked the power to overcome existing barriers such as unemployment, poverty and stigma.

Stigma associated with HIV prevents many from disclosing their HIV-status limiting their access to treatment. The compulsory disclosure to a treatment buddy or significant other implies compulsory disclosure of HIV status and in a setting where HIV related stigma is high this criteria dissuades some from taking up ART. Fear of violence and exclusion from the family was often mentioned, in particular by women, as a reason for non-disclosure. Their fear also seemed valid since several respondents had been threatened by their spouse or other family members because of HIV, and many had seen others being mistreated in the community. The ethical dilemma of conditioning patients′ access to lifesaving treatment on potentially unsafe actions in the current cultural context of stigma must be recognized and further evaluated. Despite occasional awareness campaigns, knowledge about HIV is still rudimentary in Kibera and many of the respondents pointed out the need for increased awareness.

Our findings also indicate that ART providers must become more aware of the importance of religion and traditional medicine in patients’ decision-making regarding ART and address these issues in a non-judgemental way. While many believe that traditional medicine is the key to fighting HIV in Africa (Homsy et al., 2004), others point to harmful customs that not only delay the seeking of evidence-base care, but that could even aggravate the disease and kill patients (Munk, 1997). Despite the fact that traditional medicine is the primary source of health care in sub-Saharan Africa, it has received little attention (Mills et al., 2005; Zachariah et al., 2002). Recently, WHO acknowledged the importance of integrating indigenous medicine with the national health care system (Homsy et al., & Kabatesi, 2004; WHO, 2002) a process that has already begun in South Africa (Morris, 2001).

The findings from this study have helped to guide a number of urgent policy related changes within the Kibera ART programme namely: a) all ART eligible positive individuals are offered nutritional supplementation using a ready-to-use food; b) all information pamphlets have been reviewed and adapted to the reality of the local context; c) the use of other methods of communication e.g. through peer groups, church and traditional leaders have been enhanced; d) although encouraged, disclosure of HIV status and the presence of a ‘treatment buddy’ are no longer compulsory to start ART; and e) links with other partners and NGOs in Kibera have been enhanced.

Acknowledgements

The study was financially supported by The Swedish Medical Research Council and MSF Belgium. Many thanks to Kristina Bolme, MSF Sweden, giving us background information about the Kibera context when designing the study. We are also grateful for the valuable advice and comments provided by and Helga Ritter at MSF and to Sara Norlén, Olivier Bluteau and the rest of the MSF staff in Nairobi. Special thanks to Alice Belita and Douglas for data collection, and to Professor Hans Rosling at IHCAR for always providing an extra dimension to our perception about reality.