Annals of Tropical Medicine and Public Health

ORIGINAL ARTICLE
Year
: 2016  |  Volume : 9  |  Issue : 5  |  Page : 331--339

Knowledge, opinions, and experiences of stigma as a barrier to antiretroviral therapy adherence among HIV community volunteers and health care givers in an urban slum, in Uganda


Andy Mprah 
 Programs and Research, Health Policy Consult, Ghana; Department of Health Sciences, University of York, York YO10 5DD, UK

Correspondence Address:
Andy Mprah
Head of Research and Programs. Health Policy Consult, Weija-Accra. Ghana, International Health Consultant/ Public Health Specialist, Department of Health Sciences, University of York, UK

Abstract

Background: This study was aimed at examining how stigma negatively affects adherence to antiretroviral therapy (ART) in urban slum, Uganda, by exploring the knowledge, experiences, and opinions of health care givers and human immunodeficiency virus (HIV) community volunteers in order to propose appropriate strategies to improve ART adherence Materials and methods: A qualitative research involving 15 semistructured interviews at Kawempe Home Care Initiative, Kampala, Uganda. Semistructured interviews were with 10 HIV community volunteers from both Kawempe and Kasangati as well as 5 health care givers who work at Kawempe and on outreach programms at Kasangati. Interviews were transcribed and data coded by thematic analysis Results: Stigma was well known and interpreted among health care givers and HIV community volunteers. Knowledge, opinions, and experiences about stigma related to ART were in depth and diverse. Possible strategies to address stigma and subsequently improve ART adherence were agreed as suitable. These included community education, training of more HIV community volunteers, increase counselling, increased family support, and behavioral change Conclusion: Knowledge about stigma is insufficient to promote adherence, but cultural issues in society should be addressed while educating and sensitizing people on stigma so as to promote adherence to ART. In addition, stigma and disclosure are interrelated phenomena that affect takers of antiretroviral drugs to adhere to medication.



How to cite this article:
Mprah A. Knowledge, opinions, and experiences of stigma as a barrier to antiretroviral therapy adherence among HIV community volunteers and health care givers in an urban slum, in Uganda.Ann Trop Med Public Health 2016;9:331-339


How to cite this URL:
Mprah A. Knowledge, opinions, and experiences of stigma as a barrier to antiretroviral therapy adherence among HIV community volunteers and health care givers in an urban slum, in Uganda. Ann Trop Med Public Health [serial online] 2016 [cited 2019 Nov 22 ];9:331-339
Available from: http://www.atmph.org/text.asp?2016/9/5/331/190180


Full Text

 Introduction



Sub-Saharan Africa continues to bear the highest burden of human immunodeficiency virus (HIV), having 68% of global prevalence and incidence, 76% of global acquired immune deficiency syndrome (AIDS) mortality, and 90% of global HIV burden in children. [1] Uganda, the pearl of Africa, is a country in East Africa. The Ugandan Ministry of Health cites that an estimated 2 million people were affected by HIV, out of which 9 00 000 people died. [2] However, with the availability of antiretroviral therapy (ART), the number of death due to HIV in the subsequent years and recently has been noted to decrease. [3] In Uganda, there is the development of a comprehensive package of HIV which involves the management of opportunistic infections, palliative care, and the provision of antiretroviral drugs. [2] At the community level, there is the adoption of home-based approach which to a large extent relieves already strained health facilities. [2]

World Health Organization estimates that in 2006, around 20% of the estimated 6.5 million people living with HIV in low- and middle-income countries received ART. [4] However, since the launch of the "3 by 5" initiative by World Health Organization and The Joint United Nations Programme on HIV/AIDS United Nations Programme on HIV and AIDS (UNAIDS), the number of ART receivers has more than tripled. [4] Although, there has been a significant scale up of ART, the issue of adherence still poses a major problem. Nonadherence of medication defeats the whole purpose of the therapy due to resistance to the drugs by the HIV virus. HIV has been transformed into a manageable chronic infection by combining ART, making adherence the main challenge for progress reduction of the disease and death associated to it. [5] Adherence rates exceeding 95% are necessary in order to maximize the benefits of ART. [6],[7] Due to certain reasons such as stigma, there is nonadherence which leads to treatment failure. Nonadherence can lead to a switch in therapy from first-line to second-line therapy which happens to be the last available stage of treatment in most developing countries like Uganda. [4]

There are different modes by which an individual can get infected with HIV/AIDS. However, HIV/AIDS infection seems to be easily linked with the "socio-culturally frowned" modes of contraction such as homosexuality, prostitution, and drug injection. As such, there is an already made up perception about anyone who is diagnosed positive. Stigma as far as HIV/AIDS is concerned has very similar manifestations around the world. [8] Stigma in general is the possession of certain traits that are discrediting and reduces a person who has these traits in the eyes of society. [9] Stigma can be distinguished into two main forms: internal stigma (individual`s own self-imagination of what other people say or think of him or her) and external stigma which has to do with societal perception and attitudes toward an "abnormal" trait in a person. [10] Other forms of stigma are compounded or layered stigma, discriminatory laws and policies, enacted stigma in institutional settings, enacted stigma in family or community settings, and fear of casual transmission as well as refusal of contact with an HIV/AIDS person. [11] HIV/AIDS-related stigma is seen to exist when issues such as labelling, separation, status loss, discrimination as well as stereotyping occur together, all targeted at people living with HIV/AIDS. [12]

There have been lots of efforts globally to reduce stigma associated with HIV/AIDS infection and treatment. HIV/AIDS-related stigma cuts across in all societies. As such, interventions and strategies to reduce this stigma must seek to target all components of the society. These often involve strategies at intrapersonal level (e.g. treatment, counselling), interpersonal level (e.g. care and support, community-based rehabilitation, etc.), organizational/institutional level (training programs, policies, etc.), community level (education, contact, advocacy, etc.) as well as governmental level (legal and policy interventions).This study was aimed at examining how stigma negatively affects adherence to ART in urban slum, Uganda, by exploring the knowledge, experiences, and opinions of health care givers and HIV community volunteers in order to propose appropriate strategies to improve ART adherence.

 Materials and Methods



Study area

This study was undertaken in June, 2012 in Kawempe, Uganda under the supervision of Kawempe Home Care. Kawempe is an urban slum on the north-western edge of Kampala, capital of Uganda. It is the location of Kawempe Division Headquarters, one of the five administrative divisions of Kampala. Kawempe is bordered to the north by Nabweru, to the east by Kisaasi, to the south by Bwaise, Kazo to the southwest, and Nansara in Wakiso District to the west. According to the 2002 population and housing census, Kawempe Division alone recorded a total of 2 687 659 people, 58% of which were females and 42% were males. [13] However, majority of women are low-income earners involved in petty trading mainly in the informal sector which leads to inequity to health and social services. [14] In 2007, it was found that 45% of the people who tested for HIV at two local health centers were positive and women often resort to sex work to earn an extra income. [15] This has resulted in a higher than normal national average rate of HIV and sexually transmitted infection [Figure 1]. [15],[16] {Figure 1}

Study design

A qualitative methodology which involved semistructured interviews of health care givers and HIV community volunteers was adapted for this research. Due to the impossibility to quantify perceptions and views of research participants, a qualitative study was chosen for this study. [17] Interviews were carried out subsequent to obtaining an informed consent from research participants. The interviews were semistructured with probing as well as rapport was achieved with participants and making participants understand the research aim. [17] This study sought to look out for the consistencies and inconsistencies as well as the relationships between the knowledge, experiences, and opinions of HIV community volunteers as well as that of care givers who included clinicians and counselors. Furthermore, this study sought to investigate the effect of stigma on ART adherence.

Study population

This study focused on views and opinions of HIV community volunteers (support group members) and care givers in the Kampala district and Wakiso district. The inclusion criteria included minimum of 21 years age of participants. Also, community volunteers must have had 2 or more years' experience in issues pertaining to HIV/AIDS and from either Kawempe or Kasangati. Care givers must have had 2 or more years' experience related to the study.

Sampling technique

The sample size was determined by the number of community volunteers and care givers who met the inclusion criteria, the researcher's capability, and what could be achieved within the 3 weeks' time frame of the study. [18] Also due to time and funding constraint, the primary sampling method was more of convenience sampling. This is because the study depended on which community volunteer and care giver was available at a particular point in time. [19]

Data collection

Data collection was in the form of semistructured interviews with probing and rapport with the research participants. [20] The interview guide contained both closed and opened questions [19] and lasted between 35 and 40 minutes. Prior to the start of interviews, two pilot interviews (one HIV counselor and one community volunteer) were held in English, to ensure the questions for the interviews were appropriate in terms of the culture in Kawempe (similar to Kasangati) and whether the questions addressed the objectives of the study as well as understood by the participants. Minor adjustments were made with the cultural differences and also with certain terminologies which were not quite understood well by some interviewees. For example, a terminology like "ART" or its nonabbreviated form was not popular and well known among the community volunteers. Instead, "ARV" was very well used in the local setting and as such, "ART" was replaced in the question guide with Antiretroviral (ARV) although in real terms, ARV is a subset of ART. Two interviews were held on each interview day, led by the researcher in English, translated into Luganda by a translator and the responses of participants translated back into English. With the permission of participants by way of an informed consent; all interviews were audio recorded and manually transcribed by the researcher right after the interviews which followed a question guide. Difficulties in the transcription were clarified with the translator. [17] Field notes were made during interviews to aid and clarify analysis and transcription, and a research diary for daily reflection of activities was kept throughout the research. [17],[21] A few participants opted to converse in English; others conversed in both English and Luganda, while few others (mostly the community volunteers) conversed purely in Luganda. Brief reflection of each interview session was made with the translator at the end of each interview day.

Data analysis plan

After transcription, interviews were coded by thematic analysis, identifying similar attributes within the data which was an inductive approach. [22],[23] The whole data transcribed were analyzed, excluding pilots, since significant changes were made to the interview guide after the pilot interviews. A priori codes emanating from existing literature helped frame the research question and interview guide for the research and provided the basis for analysis. [20] Grounded codes emerging from the data devoid of previous research knowledge were also used to reflect the depth of the interviews. [21] The coded transcripts were looked at thoroughly in order to compare themes and subcategories and identify similarities and contrasts. The main themes developed thereafter served as the basis for data analysis.

Ethics

This study was reviewed and received institutional clearance from the Leeds Institute of Health Sciences Research Ethics Committee, University of Leeds, United Kingdom as well as the Kawempe Home Care Initiative, Uganda. Informed consent was obtained from all participants by giving them 24 hours to reflect on the information sheet provided to them. It was explained to all participants that this was a voluntary exercise and they were free to participate or decline.

 Results



Semistructured interviews with 15 participants involving 10 HIV community v olunteers (who themselves are on ARV) and 5 health care givers comprising of 2 counsellors and 3 clinicians were conducted. HIV community volunteers had 2 years or more experience on ART and as community volunteers. Care givers who participated in this study also had between 2 and 4 years' relevant experience relevant to the study. The key findings from the interviews are highlighted below.

 Knowledge



Effect of stigma on adherence

When the participants were asked about the effect of stigma on ARV adherence, they gave diverse answers with respect to level of knowledge and exposure. All care givers (clinicians and counsellors) gave similar responses on how antiretroviral drugs and their routine intake are perceived as bad in the community, thereby making clients try as much as possible to hide medication for fear of disclosure of their status, and subsequently being stigmatized. They further stated that the direct effect of stigma is nonadherence which involves HIV clients hiding their medication from their close relations and missing some doses. A clinician stated that "stigma affects adherence in such a way that people don`t take medication in time and sometimes default" [translated] (Interview A3). Another clinician stated that, "a lady was positive and had to hide her medication with a neighbor to avoid the husband from seeing them and so defaulted" [translated] (Interview A4). This signifies the extent to which stigma in the society can make people do all sort of things to avoid disclosure of them taking antiretroviral drugs.

The response by the community volunteers also called "expert clients" was rather diverse. As noted earlier, it became clear from the pilot interviews that among the community volunteers, the term "ART" was not quite understood as compared to "ARV". About 6 out of the 10 community volunteers interviewed explained stigma in relation to antiretroviral drugs. One of them commented: "An example of stigma is someone who fears to take medicine in public or go to the clinic for medicine because she would not want anyone to see her" [translated] (Interview B5). The rest of the community volunteers described stigma as reluctance of people to disclose their HIV status. A community volunteer stated that: "stigma is having a difficult heart and not wanting other people know one has HIV" (Interview B3). However, all the community volunteers responded that stigma leads to people not taking their medication when they are in the company of family and friends and this leads to nonadherence. One participant commented that, "stigma kills" (Interview B8), indicating that stigma leads to nonadherence which can eventually lead to deterioration and finally death.

Implications of taking ARVs

All care givers expressed their knowledge about what taking ARVs mean, citing dedication of taking the medication every day at regular time intervals and not ever missing a dosage. One participant commented that "it involves leaving a healthy life by avoiding alcohol, cigarettes, and sexual promiscuity" [translated] (Interview A1); reason being that these acts might make a person on antiretroviral drugs forget to take a dosage. All the community volunteers` responses were similar with respect to their knowledge of the implications of taking antiretroviral drugs. They all seemed to be aware of the demands of taking antiretroviral drugs and the efforts involved in adhering. One participant stated that "I know I have to take my medication until my end" (Interview B1).

Timing of taking medication

All care givers were consistent with the knowledge on the timing of antiretroviral drugs stating that there must be a 12-hour interval between a morning dose and an evening dose. All community volunteers had knowledge on the dosage interval and timing of taking antiretroviral drugs. One volunteer stated that "Me, I take my drugs early in the morning at 7a.m and at 7p.m in the evening" (Interview B7). Another volunteer stated that: "Previously, she wasn't taking medication regularly as advised, but currently if it is about time for taking medication, she feels she is missing something" [translated] (Interview B5).Awareness of the dosage timing of antiretroviral drugs by both research participant groups was seen to be very positive.

Other barriers to adherence in relation to stigma

All care givers did cite nondisclosure as another barrier to adherence in relation to stigma. One counsellor commented that "refusal to disclose taking antiretroviral drugs to a spouse could lead to nonadherence when that spouse is at home" [translated] (Interview A1). Almost all community volunteers drew from their knowledge as expert clients as well as mentors of newly initiated HIV clients and stated that disclosure is a main issue with adherence of medication. One community volunteer stated that "She has not disclosed her status to certain members of her family and as such will find it difficult in taking her medication in their presence" [translated] (Interview B10). Other community volunteers cited poverty as another barrier to adherence stating that "the medication makes you have appetite and hungry" (Interview B8). As such, "when a taker of the medication has no money to meet the demands of taking medication" [translated] (Interview B7), this particular individual becomes discouraged and will only take the medication when there is food for consumption for the day.

Dangers of nonadherence

All care givers shared their knowledge of the dangers of nonadherence to antiretroviral drugs once started. Awareness of the effect of not adhering to medication was very positive among all care givers. A clinical officer stated that "if a client fails to adhere, he or she is put on second-line therapy and when there is another default, then that's it" (Interview A4). This is because in Uganda like all other low-income countries, the limit for antiretroviral drug takers is second-line therapy, beyond which no medication is available. All community volunteers seemed to be aware of the dangers of not adhering to medication. One community volunteer stated that "I know that if I do not adhere to medication, I will have to move to second-line which requires plenty medicines" (Interview B6).

Possible side-effects that discourage adherence

All care givers stated that the side effects of taking antiretroviral drugs are often stigmatized. The side effect that seemed to be commonly stated by the care givers were rashes on the skin, increased weight, and diarrhea.

The community volunteers seemed to know the above-mentioned side effects by the care givers. Most of them shared their previous knowledge of the side effects of antiretroviral drugs that discourages adherence. These previous side effects are madness, infertility, and "even death" (Interview B2).

Importance of family and community support

All care givers emphasized that family of people taking antiretroviral drugs as well as the community in which they live will encourage takers of the medication if they create the right environment. One care giver stated that "a right environment should be family and community members not looking down on takers of the drug, but rather give them moral support" (Interview A5). Approximately, half of the community volunteers expressed the knowledge of the importance of both family support and support from the community for people who take antiretroviral drugs. The others did not know how both support from the family and the community will improve adherence and address stigma. One community volunteer stated that "I do not know how support from family or community can help, I believe the support is from God" (Interview B6).

 Opinions



Effect of stigma on adherence

In response to the question, "Do you think stigma affects adherence to antiretroviral drugs?" (See loose question guide in Appendix 3), all care givers opined that stigma makes antiretroviral drug takers find it difficult to adhere to taking medication. This, they claim promotes nonadherence to medication. All community volunteers shared similar opinions that stigma affects adherence negatively and leads to takers of the drugs not adhering to taking medication. Most of the volunteers seemed to express their opinion about stigma in relation to antiretroviral drugs and the fact that an individual can miss a daily dose because of stigma.

Implication of taking ARVs

All care givers cited that taking antiretroviral drugs means an individual has decided to take medication for the rest of that individual's life and also to take them consistently on specific times of the day. The implication opined was that one has to make it a point to avoid all activities (as stated earlier) that might cause missing dosage times. All the community volunteers unanimously opined that, taking antiretroviral drugs imply that one has dedicated one's self to stick to medication and avoid all activities that will be detrimental to the effectiveness of the drugs. One community volunteer stated that "If I am taking these drugs, I must not drink alcohol" (Interview B4) and "take care of myself very well" (Interview B7).

How stigma is a barrier to adherence

Care givers opined that stigma serves as a barrier to adherence in such a way that clients hide their medication and even avoid home visits by clinicians and counsellors. One care giver stated that "Clients miss taking medication because some relatives may be on a visit in their home and as such miss medication. They then cleverly take out the missed dosages from the pack to avoid suspicion from clinicians when they attend review" [translated] (Interview A4). The community volunteers shared their opinion unanimously stating that stigma serves as a barrier by making antiretroviral drug takers scared of the consequence of disclosure and therefore would rather hide medications in the midst of friends and family in order not to be isolated and "exempted from family discussions" (Interview B6).

Family and community support affecting adherence

The care givers had divided opinions on how family and community support can minimize stigma and affect adherence. About three of the care givers (all clinicians) stated that family support as well as community support can serve as an encouragement and motivation for antiretroviral drug takers to stick to medication. One of them stated that "if there is family support, clients can even be reminded to take their medication by members of the family" (Interview A2). However, the other care givers (counsellors) cited that "a client with self-stigma will not adhere to medication no matter how the family and community support is" (Interview A5) unless he or she has undergone series of counselling. Community volunteers, however, unanimously opined that if community support and family support were strengthened in terms of food, employment, and societal dignity, there could be a high rate of adherence to medication. One stated that "if she is given a source of living and a friendly and non-discriminatory environment" [translated] (Interview B3), then antiretroviral drugs will be "taken freely without fear of someone watching" (Interview B9).

 Experiences



Effect of stigma on adherence

Care givers shared similar experiences on the effect of stigma on adherence. It seemed that all the experiences shared by the care givers showed how stigma leads to nonadherence to ART by the people on the medication. One care giver (counsellor) stated that: "a client on the onset of taking medication, gets some side effects like headache and obvious skin rashes, which prior to medication is stigmatized in the community" (Interview A1). As such, such a client gets a firsthand experience on what the community talks about antiretroviral drugs and their side effects, and decides to stop taking medication all of a sudden with the aim of rather stopping the glaring rashes and other preconceived side effects that may occur on the body. The community volunteers also seemed to have had interesting experiences about the effect of stigma on adherence. One community volunteer commented that, "she previously used to hide and take her medication at the toilet as well as hide them in money pockets" (Interview B8) and this led to missing medication at times.

HIV clients' reaction to adherence when stigmatized

All care givers stated unanimously that clients show reaction to adherence indirectly when stigmatized. One stated that "they do not tell you unless you probe further to count their medication which is the only way you will know they are not taking their drugs" (Interview A4). Another care giver commented that "the major reaction to adherence when stigmatized is clients stopping the attendance of clinic review" [translated] (Interview A5). Such clients run out of medication and "they end up defaulting medication" (Interview A3). Community volunteers also highlighted their previous experiences on how their reaction to adherence changed when stigmatized. One commented that "I stopped taking the medication because I was scared my boss will find out and sack me. I got very sick because of that and have been put on second-line now" (Interview B6).

Nondisclosure for fear of stigma

All care givers unanimously hinted that the issue of stigma in the society has made disclosure by clients taking antiretroviral drugs, a major burden leading to nonadherence. A care giver shared that "Nondisclosure of status and drug intake caused a client not to adhere to medication for fear of the stigma attached to taking the medication". [translated] (Interview A4). All community volunteers seemed to agree to the fact that nondisclosure is the basis of missing medication in order not to be stigmatized. Some shared similar experiences of colleagues who have still not disclosed that they are on antiretroviral drugs to their spouses and children. One community volunteer hinted that "they say if they let their husbands see the drugs, their status will be known and they will be divorced and sacked from home" (Interview B7).

Family and community support

All care givers gave experiences where clients have finally decided to adhere to medication because of family support. They however seemed not to have come into contact with a client adhering because the community in which he or she lives supported the client. One commented that "One of my clients who managed to disclose to the wife, became very healthy after a while because he did not take the medication in fear that his wife might find him out. As such, adhered to it very well" (Interview A3). Some community volunteers shared their experiences of how they have successfully been able to adhere because their family supported them in diverse ways from food to money and reminders to take their medication. One stated that "my mother supports me in taking my medication and my son and daughter help remind me to take my medication" (Interview B3).

 Participant Recommendations



Firstly, the principal recommendation given by health care givers and community volunteers was community education and sensitization about HIV and antiretroviral drugs. Secondly, to train more community volunteers (who themselves are on medication) to serve as role models to new clients to help reduce the stigma attached to taking medication. Other ideas include increase family support, counselling, behavioral change, and test messaging as reminders to help clients adhere to medication. However, one community volunteer was quick to state that "test messages can be read by someone else and can lead to stigma" [translated] (Interview B6), thus partially negating that as a recommendation.

 Discussion



This study explored the knowledge, opinions, and experiences among care givers (counsellors and clinicians) and HIV community volunteers on stigma as a barrier to ART adherence in Kawempe, urban slum, Uganda. There is no previous literature from Kawempe and as such, this research was based on the knowledge, opinions, and experiences from care givers and HIV community volunteers, in order to make recommendations to address stigma and improve adherence to ART.

Knowledge about stigma and its relation to adherence

All care givers and HIV community volunteers had adequate knowledge about stigma and its effect on ART adherence. These ranged from knowledge of other barriers to ART adherence apart from stigma, possible side effects of antiretroviral drugs and awareness of the importance of family and community support in addressing stigma. Stigma in relation to adherence of antiretroviral drugs is seen as a great challenge as similarly shared by research participants. [24] The responses given by all the research participants cannot be generalized as care givers and community volunteers interviewed are very experienced unlike new HIV clients and care givers who would have been new to what ART is about and its stigma effects. Therefore, the responses from the research participants might not be a true reflection of the national picture. Self-selection of participants may have also created some selection bias for this study. The knowledge of stigma and its effect on adherence to ART was indeed evidenced in this research. However, only this knowledge seems not to be the solution to address stigma associated to adherence. This shows that policy makers and administrators of health in Uganda have done well in making the issue well known by care givers and community volunteers. They have, however, not done much in terms of community education and social mobilization to reduce stigma associated with ART adherence. This study does imply that knowledge has a direct correlation with stigma reduction, which conforms to previous studies which suggest that lower knowledge about HIV is correlated with greater stigmatizing attitudes against HIV clients. [25],[26]

Opinions about stigma and its relation to adherence

Almost all the research participants opined that stigma in society leads to unwillingness by a client to disclose taking antiretroviral drugs. As such, clients deliberately miss their dosage when in the company of other people, and this leads to non-adherence. The care givers and HIV community volunteers in this research had 2 or more years' experience in relation to this study. As such, their opinions on stigma in relation to adherence can carry lots of weight because of their experience. However, this cannot be a direct reflection on the issue in Uganda. This is because the sample size for this research is too small to make such a general assumption. Findings from this research confirm study by Rao et al., [27] which found that people skipped medication because they are afraid their status may be disclosed. These findings go to imply that disclosure act as a proxy indicator for stigma. [28] One care giver also gave an account that the stigma involved in nonadherence was more of internal stigma and not stigma from society. As such, a client who has decided that ART is his or her only solution to survive will adhere irrespective of societal stigma. The policy implication in the research finding is that there seems not to be much policy directed at creating an enabling environment in Uganda for people on ART to openly take their medication and not to fear disclosure and its related stigma.

Experiences of stigma on adherence

Care givers and HIV community volunteers also shared similar experiences on stigma and the effect it has on ART adherence. All participants had in one way or the other, experienced stigma with respect to adherence. Notwithstanding the experience of care givers and community volunteers with regards to ART and its related issues, their experiences cannot be generalized as the exact experiences in Uganda. However, their experiences go to suggest that efforts to address stigma and subsequently improve adherence to ART, fall a bit short in Uganda. These experiences can be related, however, in similar contexts in low income countries. This study found that the experiences of stigma with respect to adherence was mostly targeted at women. For instance, from the findings, a care giver states that "a lady was positive and had to hide her medication with a neighbour to avoid the husband from seeing her" [translated] (Interview A4). Comment from a community volunteer who said "they say if they let their husbands see the drugs, their status will be known and they will be divorced and sacked from home" (Interview B7) goes a long way to confirm that women are mostly the recipients of the effect of stigma on ART adherence. This goes to imply that poverty and inequality are a basis of stigma, targeted at vulnerable groups. This particular finding relates to a study which found that poverty, racism, and gender inequalities in societies, fuel experiences of stigma in access to ART. [28]

 Study Limitations



First and foremost, due to the time constraint and small nature of the study, the sample sizes described were relatively small. As such, the results might not be a direct representation of the issue in Uganda and cannot be generalized as the actual issues on the ground in the country. There may have been a sampling bias with the sampling strategy as the local supervisor and person-in-charge of Kawempe Home Care helped to identify the community volunteers who have undergone series of counseling and whose knowledge, experiences, and opinions might not overwhelmingly reflect what an inexperienced HIV person goes through with stigma and adherence to medication. With respect to the clinicians, interviews were conducted during their lunch breaks and at their offices at Kawempe Home Care. This may have affected their way of responding to questions as they needed to hurriedly get done with the interviews and go back to attend to their patients. As such, answered questions hurriedly. Given that all clinicians who could speak English could not be assembled at the same time due to their busy schedules, a focus group discussion was not feasible for such a short research. Likewise for the community volunteers (limited English), due to the language barrier, a focus group discussion would not have been feasible as the translator could not have translated all conversations back and forth. [21]

 Conclusion



Findings from the study suggest that community education and sensitization about HIV, the essence as well as the initial effects of antiretroviral drug intake is a key strategy. This strategy will go a long way to address stigma in the community and subsequently promote adherence to antiretroviral drugs.

Financial support and sponsorship

Nil

Conflicts of interest

There are no conflicts of interest.

Acknowledgement

The author Andy Mprah is grateful to Prof. John Walley, University of Leeds for his support.

Also grateful to Dr. Sam Guma, Executive Director of Kawempe Home Care, Uganda, who served as host. Lastly, very grateful to my colleague Mr. Richard Ofori-Asenso, Public Health Specialist at Health Policy Consult, for his immense support.

References

1WHO/UNAIDSKey elements in HIV care and support. Available from: http://pdf.usaid.gov/pdf_docs/PNACM629.pdf. [Last accessed on 2012 Jul 26].
2REPUBLIC OF UGANDA National policy guidelines for TB/HIV collaborative activities. Available from: http://www.who.int/hiv/pub/guidelines/uganda.pdf. [Last accessed on 2012 Jul 19].
3WORLD HEALTH ORGANISATION Report of WHO technical reference group, paediatric HIV/AIDS care guideline group meeting. Available from: ulhttp://www.who.int/hiv/pub/paediatric/WHO_Paediatric_ART_guideline_rev_mreport_2008.pdf. [Last accessed on 2012 Jul 19].
4THE WORLD HEALTH ORGANISATION Antiretroviral therapy for HIV infection in adults and adolescents: recommendations for a public health approach. Available from: http://www.who.int/hiv/pub/guidelines/artadultguidelines.pdf. [Last accessed on 2012 Jul 20].
5Marins JR, Jamal LF, Chen SY, Barros MB, Hudes ES, Barbosa AA. Dramatic improvement in survival among Brazilian AIDS patients. AIDS 2003;17:1675-82.
6Gordillo V, del Amo J, Soriano V, González-Lahoz J. Sociodemographic and psychological variables influencing adherence to antiretroviral therapy. AIDS 1999;13:1763-9.
7Paterson DL, Swindells S, Mohr J, Brester M, Vergis EN, Squier C. Adherence to protease inhibitor therapy and outcomes in patients with HIV infection. Ann Intern Med 2000;133:21-30.
8Aggleton P. Comparative analysis: research studies from India and Uganda; HIV and AIDS-related discrimination, stigmatisation and denial. Available from: http://data.unaids.org/publications/irc-pub02/jc650-companal_en.pdf. [Last accessed on 2012 Jul 28].
9Goffman E. Stigma notes on the management of a spoiled identity. New York: Simon and Shuster; 1963.
10Brown L, Macintyre K, Trujillo L. Interactions to reduce HIV/AIDS stigma: what have we learned?. AIDS Educ Prev 2003;15:49-69.
11The World Health OrganizationHIV testing, treatment and prevention. Generic tools for operational research. Available from: http://www.who.int/hiv/pub/operational/or_generic_tools.pdf. [Last accessed on 2012 Jul 12].
12Link BG, Phelan JC. Conceptualizing stigma. Ann Rev Sociol 2001;27:363-85.
13Uganda Bureau of StatisticsThe 2002 Uganda population and housing census. Available from: http://www.ubos.org/onlinefiles/uploads/ubos/pdf%20documents/2002%20 Census Popn Size Growth AnalyticalReport.pdf. [Last accessed on 2012 Jul 12].
14Barongo F, Happy M. Women′s access to and utilisation of VCT services in HIV/AIDS prevention and care: A case study of Kawempe Division. Available from: http://www.nurru.or.ug/pdf/Womens_access_and_utilization_of_VCT_services_in%20HIV_AIDS.pdf. [Last accessed on 2012 Jul 12].
15AMREFKawempe community health development project, Uganda. Available from: http://www.amref.org/what-we-do/kawempe-community-health-development-project-uganda. [Last accessed on 2012 Jul 12].
16Shuaib L, Nyakaana JB. Development Planning and implementation processes for employment, health services and housing provision in Kawempe Division, Kampala District. Available from: http://www.nurru.or.ug/pdf/Develoment_planning_and_implementation_process.pdf. [Last accessed on 2012 July 12].
17Silverman D. Doing qualitative research. 3 rd ed. London: Sage;2010.
18Arthur A, 2009 Hancock B. An Introduction to the Research Process. Nottingham/Sheffield: NHS National Institute for Health Research Design Service for the East Midlands /Yorkshire and the Humber.
19Hancock B, Ockleford E, Windridge K. 2009. An Introduction to Qualitative Research. Nottingham/Sheffield: NHS National Institute for Health Research Design Service for the East Midlands/Yorkshire and the Humber
20Silverman D. Interpreting qualitative data. 3 rd ed. London: Sage; 2006.
21Flick U, An introduction to qualitative research. 4 th ed. London: Sage; 2009.
22Green J, Thorogood N. Qualitative methods for health research. London: Sage; 2004.
23Davies MB. Doing a successful research project: using qualitative or quantitative methods. Basingstoke: Palgrave Macmillan; 2007.
24Aggleton P. Comparative analysis: research studies from India and Uganda; HIV and AIDS-related discrimination, stigmatisation and denial. Available from: http://data.unaids.org/publications/irc-pub02/jc650-companal_en.pdf [Last accessed on 2012 Jul 28]
25Dias SF, Matos MG, Gonçalves AC. AIDS-related stigma and attitudes towards AIDS-infected people among adolescents. AIDS Care 2006;18:208-14.
26Kalichman SC, Simbayi LC, Kageez A, Toefy Y, Jooste S, Cain D. Associations of poverty, substance use, and HIV transmission risk behaviours in three South African communities. Soc Sci Med 2006;62:1641-9.
27Rao D, Kekwaletswe TC, Hosek S, Martinez J, Rodriguez F, Stigma and social barriers to medication adherence with urban youth living with HIV. AIDS Care 2007;19:28-33.
28Abadía-Barrero CE, Castro A. Experiences of stigma and access to HAART in children and adolescents living with HIV/AIDS in Brazil. Soc Sci Med 2006;62:1219-28.