Abstract
Most studies of HIV disclosure in Africa have focused on disclosure to spouses and sexual partners, and particularly among women. Few have examined disclosure to family, friends, and others. Understanding the reasons for disclosure and nondisclosure and how these reasons differ by disclosure target is needed for effective prevention interventions. Using a case study design and content analysis, this study explored whether the reasons for disclosure decisions differ by the nature of the relationship to the disclosure target. Semistructured interviews were conducted with 40 HIV clients in Kampala, with even stratification by gender and age. Most (95%) respondents reported disclosing to someone; among these, 84% disclosed to family members, 63% to friends, 21% to workplace colleagues, and 18% to others. Of the 24 participants who had a spouse, 13 (54%) reported disclosing to a spouse. The most common reasons for disclosure were to receive support (76%), associated with disclosure to family members; relationship ties (76%), associated with disclosure to all target types; explaining change in behavior or appearance (61%), associated with disclosing to family and friends; and HIV prevention (50%), associated with disclosure to spouse/partner and friends. The most common reasons for nondisclosure were: fear of abandonment, particularly among young women disclosing to spouse/partner; inaccessibility to the disclosure target; and not wanting to worry/upset the disclosure target. This exploratory analysis suggests that reasons for disclosure and nondisclosure differ depending on the targets of disclosure, highlighting the need for tailoring interventions for improving disclosure decisions making and outcomes.
Introduction
W
Studies of HIV disclosure in Africa show that most people (approximately 80%–90%) have disclosed to someone, but more meaningful is whether or not someone is able to disclose to key members of their social network. 3,9,10 A review by Medley and others 11 of studies conducted in sub-Saharan Africa found that disclosure rates to sexual partners ranged from 17% to 86%. The World Health Organization estimates that 52% of PLWHA disclose their status to their sexual partners in Africa. 12 More recent studies of disclosure to sexual partners or spouses in Africa have reported rates ranging from 24% to 91%. 3,9,10,13 –16 In Uganda, the study by King and colleagues 2 reported a disclosure rate of 62% to sex partners. Although limited, emerging data on disclosure to members of a person's social network other than spouses or sexual partners, such as family, children, and friends, indicate that rates of disclosure to these members of the network are much lower than disclosure to sexual partners. Visser and others' 16 examination of disclosure among women in South Africa established that 20% had reported to their parents and 23% to other family members. In Ethiopia, Deribe et al. 3 found that approximately one third had disclosed to family or relatives, and only 6% to children and 7% to neighbors.
Evidence is beginning to emerge that there are differential rates of disclosure across different segments of a person's social network, and men and women may differ with regard to who they disclose to. 1,2,3,6 For example, HIV-positive parents did not disclose as much to their children as they did with other adults. 17 In Uganda, King et al. 2 noted that men were most likely to disclose their status to their sexual partners and brothers, while women were more likely to disclose their status to their sisters. Similarly in Kenya, Miller and Rubin 1 established that men were more likely to disclose to their wives than other family members, while women were more likely to disclose to family members. Women-specific studies such as the one by Rice et al. 7 noted that women were more than 2.5 times more likely to disclose to a particular network member if that member provided the women with social support. Moreover, these women preferred to disclose to female network members who were believed to also be HIV positive. However, establishing gender disparities is complicated by the fact that the above mentioned studies were either female specific or women constituted the bulk of the respondents.
From a public health perspective, HIV disclosure has been advocated primarily because of its contribution to reduced risk of HIV transmission as disclosing HIV status, especially to one's sexual partner, encourages the partner to engage in preventive behaviors such as condom use and HIV testing. 1,3 HIV disclosure is also thought to contribute to reduced HIV stigma in the community and enhanced awareness of the importance of HIV prevention. 18 Conversely, community support especially from groups of PLWHA is thought to enhance disclosure of HIV status to family members. 19 From the perspective of the individual, Chandra and others classified the reasons for disclosure into “self-focused” or “other-focused.” 20 Those who are self-focused include the need for social support, which is often the reason for disclosing to family members 21 ; deterioration of physical health and the need to access medical care and treatment 4 ; the need for spiritual support, which is often associated with disclosing to pastors 1 ; the nature of the relationship, especially with one's spouse 2 ; and the need to be understood by others, which is often associated with disclosure to family and friends. 17 Those who are other-focused include whether or not the disclosure target is believed to also be HIV positive 7 ; concerns about how the disclosure target will respond to the information 1 ; and the desire to protect others from contracting HIV, especially in disclosure to spouses 1,8 and to children. 17
While there are many advantages to and reasons for disclosing one's status, there are also risks and reasons for deciding not to disclose. 6 Most of these relate to the negative aspects that may potentially arise from disclosing one's HIV status. These include fear of discrimination, anticipated disruption of relationships or even abandonment, fear of emotional and physical abuse, and wanting to avoid being stigmatized. 3,22 The predominance of these themes is in part attributed to most studies having focused on women and disclosure to spouses. Less is known about reasons for nondisclosure to other social groups such as children, relatives, and friends.
In this study, we explored the reasons why PLWHA in care decide to disclose or not disclose their HIV status, and how these reasons vary by their gender and age, and the nature of the relationship to the person being disclosed to.
Methods
Study design and sample
A case study design was used with data collected from mid-February to mid-April 2008, using a semistructured interview protocol. The study setting was the Infectious Diseases Institute, a large HIV clinic in Kampala, from which the respondents were selected and requested to participate in the study as they waited for their medical appointments. Systematic data was not collected regarding refusals, but the study interviewers report that very few people who were approached to participate declined to be interviewed. The convenience sample of 40 adult HIV clients was stratified by gender and age (above and below age 35). The respondents included 10 younger men, 10 older men, 10 younger women, and 10 older women.
Consent for participating in the interview was sought from the clients while they were waiting to be seen by their provider. Informed written consent was obtained after the study was explained including potential risks and benefits, the voluntary nature of the study and ability to stop the interview at any time or to not answer specific questions. Also, their consent was sought with regard to audio taping the interview, which was not a requirement for participation (although very few declined). Standard precautions were undertaken to assure confidentiality of data; no identifying data were collected or documented aside from the consent form, which was kept in a locked cabinet, separate from the interview transcripts and data, and with access only to the study team members. All interviews were conducted in a private room within the HIV clinic. The study protocol was reviewed and approved by the Institutional Review Board (IRB) at Makerere University and the Uganda National Council for Science and Technology.
Interview protocol
The interview focused on eliciting information about direct disclosure, in which the person deliberately attempts to inform another person of their HIV status, while nondisclosure was considered to refer to a deliberate decision not to disclose one's HIV status. The targets of disclosure were disaggregated by social role and included spouse/partner, family members, friends, and others in the community. Respondents were asked if they had disclosed to someone in each of these target groups, and if so, to recount one disclosure event. Specifically, respondents were asked: what exactly they had said or done to disclose their status; what triggered the disclosure and the reasons for disclosure; the context of the disclosure (where they were, who else was around and what was going on); what they felt and thought as they were disclosing; and the short- and long-term consequences or outcomes of the disclosure. Not all respondents disclosed to all the social target groups. Where this was the case, respondents were asked to provide their reasons for not disclosing to someone within the target group. The interviews were conducted by four graduate students and Drs. Ssali and Atuyambe, and in the language the respondents were conversant with, but mostly English, Luganda, and Runyankole. The interviews were taped and then transcribed into English.
Data analysis
For this article, the analysis focused on the data regarding reasons for disclosure and nondisclosure. To identify themes elicited from the interviews, we utilized a staged technique described by Lincoln and Guba 23 and elaborated on by Ryan and Bernard. 24 First, we used text management software (ATLAS.ti) to mark contiguous blocks of transcript text that pertained to the major topical domains of interest (how HIV status was disclosed, trigger event, reason for disclosure, short- and long-term response to disclosure) within each social target group of the disclosure (spouse, family, friends, others). We then pulled out all text associated with a particular domain and after printing the quotes on slips of paper, the team members sorted the quotes into piles based on their thematic similarities. We then named each thematic category and developed an explicit codebook to describe each category. In the next step, we matched each quote in a domain with a specific subcategory. We then examined the degree to which these themes were distributed across gender, age group, and social target group.
Results
Sample description
Aside from gender and age, there was considerable variation in demographic and background characteristics of the 40 study participants. With the exception of 4 participants who were security officers, most of the respondents were either self-employed (28/40) or unemployed (8/40). Most of the respondents had either primary school education (16/40) or some secondary level education (15/40). Most of the respondents had known their HIV status for more than two years (33/40). With regard to time since entry into HIV care, most (21/40) had been in HIV care for more than 2 years. These characteristics did not differ greatly with regard to age or gender, with the exception of education; women were predominantly among those with only primary school education (12/15), while men predominated among those with secondary level schooling (12/16).
Prevalence of disclosure
The prevalence of disclosure was high, with all but 2 (38/40) respondents reporting disclosure to someone. Among the 38 who had disclosed, 18 were men and 20 were women. Among the 40 participants, 80% (32/40) had disclosed to family members, 60% (24/40) to friends, 20% (8/40) to workplace colleagues and 18% (7/40) to others in the community. Of the 24 participants who had a spouse after testing HIV positive, 13 (54%) reported having disclosed to a spouse. Generally there were no marked age and gender differences in disclosure. However, of the 5 people who reported disclosing to children all were older women, and of the 9 who reported disclosing to workmates, 6 were men and 3 were women. Also, more women (n = 18) than men (n = 14) disclosed to family members. Of the 13 respondents who had disclosed to their spouses, most were young (n = 8).
Reasons for disclosure of HIV status
Across the 90 disclosure events that were reported, a total of 282 reasons were identified from the interviews; most events were associated with multiple reasons for the decision to disclose. Table 1 reveals the range and frequency of reasons reported for disclosing one's HIV status. These reasons were then classified into five categories: (1) to receive support (to receive emotional, financial, or material support; obtain a treatment buddy for entering HIV care; to access treatment and other forms of assistance); (2) HIV prevention (protect others from HIV; prevention advocacy; encourage others to get HIV tested); (3) relationship ties (person is a trusted friend or relative; had gotten tested with or discussed HIV testing with); (4) explain obvious change in behavior or appearance; and (5) other or miscellaneous reasons (all reasons that were reported by only a few respondents). To receive support accounted for 22% (62/282) of all described reasons and was reported by 76% (29/38) of the participants who had disclosed to anyone; relationship ties accounted for 31% of all reasons and was reported by 76% of disclosers; explaining change in appearance or behavior accounted for 20% of all reasons and was reported by 61% of disclosers; and HIV prevention accounted for 16% of all reasons and was reported by 50% of disclosers. With regard to gender and age, the only notable difference was that more women (n = 17) reported relationship ties as a reason for disclosure than men (n = 12).
n = 282 total reasons reported for disclosure.
n = 38 participants who disclosed to anyone.
Reasons for disclosure by social role of target
When comparing reasons for disclosure across spouses, family and friends (the three social target groups with high disclosure rates), patterns were observed with some reasons being more predominant in disclosure to some social target groups than others. Specifically, disclosure for the purpose of receiving support was most prevalent as a reason cited by those who disclosed to family members (66%; 21 of 32 who disclosed to family), then to disclosure to friends (29%; 7/24) or spouses (23%; 3/13). The following quotes from the interview transcripts serve to illustrate this further:
I told that sister of mine because she is the one who gives me money that brings me here. The reason why I told her is that, whenever I get any problem, she is the one who helps me. (Older Woman disclosing to sister)
For me I have told all my people including my mother, my siblings and my five children because, they are the ones who used to bring me here when I could not move. (Older woman disclosing to family members)
… it was me who told my brother. … Yes, it was myself who told him. When I realised that I was infected, I told him because he asked me what are you suffering from?. … What led me to disclose to him was because some times I may not have money and he helps me, I can always get the help that I cannot afford. … I realized that these are the people I move with and therefore can be handy to help me. (Older man disclosing to younger brother)
HIV prevention or protecting the person from HIV was more prevalent as a reason for disclosing to friends (46%; 11 of 24 who disclosed to friends) and spouse/partner (38%; 5/13), than disclosure to family (25%; 8/32).
… .Yes, it is me that disclosed to them [members of his youth group]. Two are girls and the other two are boys. For the two boys, I told them you are still joking around with this world but there is sickness out there. HIV is out there! But HIV kills you after you have invited it yourself. By then, I had healed from TB and I was very strong. I told them, I discovered what was killing me. I first got TB which was treated successfully, but later I realized I was suffering from AIDS. You need to go and do HIV tests. (Young man disclosing to fellow youth).
… That thing forced me [to disclose to her], because she is my wife. She is like my mother now, although my mother is still alive. I sleep with her in the same house, so when I am sick she is the first one to realize that so-and-so is dying. That thing forced me to disclose to her where we stand, because I was thinking for her she might be negative. If she was negative she would remain behind when I die to look after the children. But if she was positive, then we could see how we could protect ourselves and our children. … (Young man disclosing to spouse)
Moreover, disclosure by males (especially) to their female spouses, was often driven by the desire to protect the spouse from HIV infection (if she was not yet infected), so that she would be there to look after the children in case the male discloser died. For female disclosers, where disclosure was associated with HIV prevention, it was so that the spouse could consider using condoms.
What forced me to tell her to come and test was that she used to do some things and she would waste a lot of money. So I wanted her to know the conditions prevailing, how we can plan for our children when we are gone that can help them. That is what I was thinking about … when I disclosed to her, she accepted and did exactly what I told her to do and another thing is that I cautioned her of not wasting money but rather put it in something that will benefit us and see how we can help our children … For her what she saw as true was working for our children because she first analyzed what was happening and then decided to follow what I told her. (Young man on why he disclosed to spouse).
I disclosed to him because I wanted him to know the truth. I hate keeping secrets. I was also concerned about safe sex just in case I asked him to use a condom and he refused. Because this is not what I wanted [she did not want to infect her partner]. (Old woman on disclosing to her spouse).
Meanwhile, disclosing to explain obvious changes was a prevalent reason cited by those who disclosed to family (50%; 16/32) and friends (42%; 10/24), but not spouse or partner (15%; 2/13).
When I was young, I used not to frequently fall sick. I was very strong. Then at some point, I lost weight. People started asking me what was wrong. My sister who was a nurse also asked me what is happening. People that knew me before the loss of weight, every time they met me would ask, ‘what happened to you?’ Then I would say, “I have been sick.” But I was lying to them. But later on, my sister suspected that I could be positive and she told me, “You should go for an HIV test either in Mengo or Kibuli.” So I tested and when she asked me the results, I had to tell her. (Young man disclosing to sister).
Last, strength of relationship ties was often cited as a reason for disclosure among those who disclosed to family (59%; 19/32) and friends (54%; 13/24), but less so for spouses (31%; 4/13).
I told my older sister because she lives near me. Besides, I did not want to fall sick or get problems without her knowing exactly what I was suffering from. I did not want them to see me crying without knowing what was making me cry. I wanted them to be aware of whatever problem I was likely to face. (Young women disclosing to sister).
I decided to go and disclose to my mother. My concern was my mother getting to know about it from my sister and then getting worried … She is my mother and even if she had been bitter about it, there's nothing I would have done. It had already happened and it was beyond my control. (Young women disclosing to mother).
I also disclosed to one of my friends because we usually move together since we all take alcohol. So a time came and I told him that the strong spirits that I am taking, I am not supposed to use them because they diagnosed me with AIDS. (Old man disclosing to a friend).
Prevalence and reasons for nondisclosure
While only 2 participants reported having disclosed to no one, 18 (45%) of the 40 participants had not disclosed to members of at least one of the social target groups enquired about in the interviews. A total of 28 nondisclosure decisions were described across the sample, from which a total of 54 reasons for nondisclosure were elicited. Table 2 lists the range and frequency of reasons given for deciding not to disclose one's HIV status. The most common reasons for nondisclosure were fear of abandonment, inaccessibility to the disclosure target (such as target no longer lives nearby or is not seen often), and not wanting to worry or upset the disclosure target.
n = 54 total reasons reported for nondisclosure.
n = 18 participants who did not disclose to anyone within a single social target group.
When examining differences by age and gender, women reported more nondisclosure events or social target groups in which they had disclosed to no one (n = 17) compared to men (n = 11), and younger clients reported more nondisclosure events (n = 19) than older clients (n = 9). Young women were more likely not to disclose because of fear of abandonment, while older women were more likely not to disclose because of fear of upsetting the disclosure recipient, as portrayed by some of the quotes below.
Reasons for nondisclosure by social role of target
Similar to reasons for disclosure, there were indications that some reasons for nondisclosure are more commonly associated with specific types of social target groups. For example, fear of abandonment or rejection was more common with regard to decisions to not disclose to spouse/partner (5 of 7 nondisclosure decisions) and friends (3/5) than family (1/10).
… Aaaaha, when I knew my status, I did not tell him immediately … … I knew that if he knew he would abandon me in hospital … that was his habit. Hmm … for him, he easily turns around on others and makes it your fault. (Old woman on why she had not disclosed to the spouse).
… I have never told any of my husbands. The first one, his wife was threatening me. Even this one I fear him because he is a married man … there is no way I can tell him that either this one or the other ones, that I am sick [with HIV]. Initially, he even suggested we check, because we took a long time (6 months) using condoms. Then he stopped using condoms and even if I ask him if he does not fear HIV, he says he is no longer thinking about that. You see, as you know there was nothing that I could do about it because when I insisted on condoms, he told me, as you know men, he told me that it seems you no longer love me. (Young woman on why she has never disclosed to any spouse).
Concern for upsetting the target and inaccessibility of the target were more common with regard to family members (4 out of 10 nondisclosure decisions for each), but not spouses or friends.
None of my parents are alive. I have close relatives in the village, but I have not disclosed to any … For the closest relatives who are still around I cannot tell them because I think if I disclose to them, it would annoy them. (Young man on why he has not disclosed to any relative).
I have not told my mother because she is an old woman—she will overthink. You see when people know that somebody has HIV they think someone is going to die. That is what they have in mind—most of the people. So with such an old woman or old man you tell her—she will say my son is going to die—you are going to die; such a thing. (Young man on why he has not disclosed to his mother)
I have two girls and two boys (who are adults) … for them I have never told them. When you tell them they start getting worried … as long as I have not started getting sick like am bedridden, I will never tell them, I cannot lie to you, I do not want to worry them … but when I get bedridden they will know that I am sick later but in these times when I have not told them, God has helped me and I have not gotten any strong illnesses that make me bedridden. (Old woman explaining why she has never disclosed to children).
Discussion
This is one of few studies to examine HIV self-disclosure to all segments of a person's social network, including spouses, family, friends, and others in the community. Similar to other studies conducted in Africa, 2,3,6 nearly all participants had disclosed to someone; however, rates of disclosure varied widely depending on the social target group, as many had disclosed to a family member or friend, but far less respondents had disclosed to spouses and members of the community. With regard to spouses or primary partners, over half had disclosed to a spouse, which is also similar to other studies. 2,3,8
For the most part, there were no marked gender and age differences with regard to disclosure to specific targets, except for the observation that among the few who reported disclosure to children, all were older women, and among those who reported disclosure to work colleagues most were men. Older women may be more likely to disclose to children because they are more likely to have children who are old enough to disclose to and who could understand its meaning and circumstances. More men may disclose to colleagues at work because they are more likely to work in settings outside the home where they have coworkers, as opposed to women who may be more likely to work at home in this setting.
The study identified a wide range of reasons for disclosure, but for the most part these reasons could be classified into four primary themes: to receive support (financial, material, moral and emotional, treatment), relationship ties, to explain change in behavior or appearance, and to promote HIV prevention or protect others from HIV. These reasons are consistent with previous research on motivations for disclosure, 2,3,7,19,20 and the self-focused and other-focused delineation of reasons described by Chandra et al. 20
Reasons for disclosure differed depending on the social group of the disclosure recipient. Disclosure that was motivated by the desire to gain support was mostly associated with disclosure to family members. This association highlights the role of the family in Africa in offering support and providing a safety net for people, especially considering the limited proliferation of formal social security mechanisms in Uganda and most other parts of Africa.
Promotion of HIV prevention or protecting the person from HIV was mostly associated with disclosing to spouse or partner and friends. Disclosure by males (especially) to their female spouses, was often driven by the desire to protect the spouse from HIV infection (if she was not yet infected), so that she would be there to look after the children in case the male discloser died. For female disclosers, where disclosure was associated with HIV prevention, it was so that the spouse could consider using condoms. Disclosing to friends with regard to HIV prevention was simply associated with protecting them from infection, often prompted by viewing the friend's sexual conduct as risky, and involved encouragement to get tested for HIV.
Disclosure of HIV status to explain obvious changes was more commonly reported as a reason for disclosure to family and friends, than to spouse or partner, while strength of relationship ties featured more with disclosure to family and friends. The association between strength of relationship ties and disclosure to family and friends highlights the length of time the HIV client may have related with the family and friends, enabling the family and friends to note and ask about changes in appearance and behavior, which may be unlikely with newer relationships such as sexual or romantic partners. These reasons and their association to specific targets highlights the importance of closeness and social distance to the disclosure target as a key factor in the decision-making process to disclose one's HIV status.
The prevalence of nondisclosure to specific social target groups was generally lower than disclosure, yet a significant minority (20–40%) had not disclosed to anyone within their family, friends or spouses/partners. The study established that the targets for non-disclosure differed as were the reasons motivating the nondisclosure to specific targets. The most common reasons for nondisclosure were fear of abandonment, which was mostly associated with disclosure to spouse/partner and friends; and inaccessibility to the disclosure target and not wanting to worry or upset the disclosure target, both of which were mostly associated with disclosure to family members. As with the reasons for disclosure, the reasons for nondisclosure are also motivated by closeness to the target, mostly based on fear of upsetting the target or being abandoned. Although this was expressed by all categories of respondents and for each disclosure target group, it was especially prominent with young females, in relation to their sexual partners, who in many instances had sexual partners other than our respondents. Also in many instances, these relationships had not lasted long as in the case of the older women. This finding concurs with previous research which highlight fears of verbal and physical abuse, fear of rejection and other forms of negative responses from the disclosure target as deterrents of disclosure. 6,22
The study has a number of limitations. The sample size is small and it is not generalisable to all HIV-infected persons living in Uganda. All the respondents were derived from an HIV clinic in Kampala, which is both urban and cosmopolitan, and had received counseling as part of routine care; most were on HIV treatment and had a treatment buddy or supporter to facilitate coping with HIV. Different findings may have been elicited from HIV-infected persons in rural settings, who are not in care and do not have such a support system to facilitate HIV medical care and coping with the disease.
Conclusions
This study set out to explore whether disclosure rates and reasons for disclosure or non-disclosure differ depending on the disclosure target. The findings suggest that the reasons for disclosure may differ by target of disclosure or nondisclosure, highlighting the need for tailoring interventions and strategies for improving disclosure decision making according to the specific needs of the disclosers and who they are disclosing to. The prominence of support, closeness and social distance between the discloser and the disclosure target highlights the need for people to feel safe when disclosing. With safety and support being essential ingredients for positive disclosure outcomes, it is important to recognize that decisions to not disclose can also be appropriate, especially in conditions where abuse and abandonment are possible responses to disclosure. These dynamics highlight the importance of improving the social context of disclosure and programs aimed at reducing stigma in the community so as to promote a safer environment for disclosure.
Furthermore, the prominence of material support highlights the need for material provision for PLWHA, implying that treatment and care alone are not enough to facilitate disclosure. PLWHA in resource limited settings need secure livelihoods to effectively promote secondary prevention of HIV. Finally, the prominence of HIV prevention as a reason for disclosure highlights how we can draw on this intrinsic motivation to encourage HIV clients to disclose and to advocate for prevention and discuss HIV among their social networks. From the above observations, this article recommends that interventions to promote disclosure and HIV prevention need to empower PLWHA with skills to make effective decisions regarding when it is safe to disclose as well as when it is best not to disclose, and to tailor intervention strategies to address the concerns about disclosure that vary depending on the target of disclosure.
Footnotes
Author Disclosure Statement
No competing financial interests exist.