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African Journal of AIDS Research 2010, 9(4): 337–344 Printed in South Africa — All rights reserved

AJAR

ISSN 1608–5906 EISSN 1727–9445 doi: 10.2989/16085906.2010.545633

Disclosure among HIV-positive women: the role of HIV/AIDS support groups in rural Kenya Hannah J Gillett1* and Jennifer Parr2 Newcastle University Medical School, Framlington Place, Newcastle Upon Tyne*, Tyne and Wear NE2 4AB, United Kingdom Nuffield Centre for International Health and Development, Leeds Institute of Health Sciences, Charles Thackrah Building, 101 Clarendon Road, Leeds LS2 9LJ, United Kingdom *Corresponding author, e-mail: [email protected]

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Disclosure by people living with HIV or AIDS is critical for HIV prevention and care. However, many women choose not to disclose their HIV status for fear of negative outcomes, such as blame and rejection. The World Health Organization suggests that HIV/AIDS support groups help to encourage women to disclose their status, but little is known about the role of such groups in Kenya. This study used qualitative research methods to gain insight into rural women’s experience of disclosing a positive HIV status and it explores opinions about the role of support groups in relation to disclosure. Focus group discussions and semi-structured interviews were conducted with HIV/AIDS support group members and leaders. Thematic analysis showed that the women felt a sense of duty to inform others of their HIV status, particularly in order to prevent HIV transmission and to encourage sexual partners to be tested. There were multiple problems associated with disclosure, and negative outcomes such as blame and rejection were common. Support groups gave the women confidence and provided emotional support, which may have assisted them with coping with the negative outcomes of disclosure. The findings demonstrate that such support may improve women’s experience of HIV-status disclosure and possibly even promote disclosure. However, initiatives such as these must protect those who disclose and therefore should take into account the local cultural and economic context. Keywords: Africa, prevention, qualitative research, resource-poor settings, socioeconomic factors, stigma

Introduction HIV-status disclosure by people living with HIV or AIDS is widely advocated as a means to prevent HIV transmission (UNAIDS/WHO, 2000) and as such has received much attention in the international health literature (Maman, Mbwambo, Hogan, Kilonzo & Sweat, 2001; Medley, GarciaMoreno, McGill & Maman, 2004). On an individual level, disclosure facilitates HIV-infected individuals to seek treatment and care, and supports adherence to complex treatment regimens (Norman, Chopra & Kadiyala, 2005). Broadly speaking, disclosure may also assist HIV-prevention efforts in society as it enables others to learn from the experiences of people living with HIV (Paxton, 2002). Despite these proposed benefits, many women living with HIV choose not to disclose their status. Literature from sub-Saharan Africa cites fear of blame, violence and abandonment by a partner, as well as stigma and isolation within the home and community as major barriers to status disclosure by HIV-positive women (Maman, Mbwambo, Hogan et al., 2001; Medley et al., 2004; Greeff, Phetlhu, Makoae, Dlamini, Holzemer, Naidoo et al., 2008). For those that do disclose, the negative outcomes of disclosure, although reported less frequently than positive outcomes (Grinstead, Gregorich, Choi & Coates, 2001),

are widespread and range from blame and rejection to violence and even murder (Medley et al., 2004; Deribe, Woldemichael, Wondafrash, Haile & Amberbir, 2008). Disclosure has significant health implications, firstly because the negative outcomes of disclosure can be detrimental and severe for the women affected, and secondly because low rates of disclosure may increase cases of HIV transmission to others (UNAIDS, 2006). The World Health Organization (WHO) suggests that activities used in support groups for people living with HIV may help HIV-positive women develop the confidence to share their status with others (UNAIDS/WHO, 2000). In the last decade, there has been a dramatic rise in the number of HIV/AIDS support groups in Kenya. The government has established the National Network of Post-Test Clubs (i.e. support groups), and the African Medical and Research Foundation (AMREF) has a countrywide project to set up and strengthen existing HIV/AIDS support groups (AMREF, 2006a; National AIDS Council, 2008). Support groups, as defined by AMREF (2006b, p. 35), are “groups of individuals with a common need who come together to share experiences while supporting one another,” a major goal being to enable “group members to deal better with issues of status disclosure.” However, very little is known about the role of support

African Journal of AIDS Research is co-published by NISC (Pty) Ltd and Routledge, Taylor & Francis Group

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groups in terms of HIV-status disclosure. This is highlighted in a WHO-supported literature review citing a need to document how HIV/AIDS support groups deal with disclosure in order “to gain insights for how to strengthen and expand such initiatives” (World Health Organization, 2004, p. 3). To the best of our knowledge, the present study is the first study to examine how support groups in Kenya may impact on disclosure. The HIV epidemic remains one of the most significant problems affecting Kenya, with an estimated 5.1% of the population infected (National AIDS Council, 2008). The proportion of women infected with HIV has risen in recent years, and it is estimated that women account for two-thirds of the 1.1 million HIV-positive adults in Kenya (UNAIDS, 2008). HIV-prevention efforts are hindered by widespread poverty — almost 20% of people live on less than US$1.25 a day (UNDP, 2010). There have been comparatively few studies on HIV status disclosure carried out in low-income countries such as Kenya, particularly in rural areas where the prevalence of HIV is lower than in urban areas (UNAIDS, 2008). A study conducted in Kenya’s capital city, Nairobi, found that women’s motivations to disclose were strongly influenced by access to food, medicines, and ability to pay their children’s school fees. This demonstrates that economic context affects women’s experiences of HIV-status disclosure, suggesting that initiatives aiming to promote disclosure, such as support groups, should be adapted to the specific needs of those they serve. The aim of this study was to gain insight into HIV-positive women’s experiences of disclosure, particularly to explore their opinions about the role of HIV/AIDS support groups in relation to HIV-status disclosure. The study was carried out in a rural setting in the Eastern Province of Kenya during May–June 2009. Methods This exploratory research had a qualitative methodology. The primary research methods were semi-structured in-depth interviews and focus group discussions. These were carried out with HIV-positive women who were either members or leaders of HIV/AIDS support groups. Study setting and procedures The study was carried out in a rural setting in the Eastern Province during May–June 2009. Three geographical locations were chosen: a town and two nearby villages. Focus groups and interviews were carried out at a health centre, hospital and church, and one participant was interviewed at her home. The study district had a well-established network of 20 HIV/AIDS support groups. These were founded by AMREF in 2006 in collaboration with health workers at the local government hospital. Support group members are recruited when they attend appointments at the hospital or local health clinics, as well as via churches and by word of mouth. Most groups have between 15 and 30 members and approximately 60–100% of support group members are female. Support group meetings are led by support group leaders

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who are local volunteers. Each support group leader receives five days of training from the support group coordinator for the district, who is employed by AMREF. Support group leaders are trained on issues such as HIV infection and transmission, antiretroviral treatment (ART), and HIV/ AIDS stigma. Leaders teach members about these issues at weekly meetings. Not all the support group leaders are HIV-positive; however, all of those included in this study were. Participants Participants were selected purposively as this facilitated the selection of a variety of informants representing a range of ages and occupations (Denscombe, 2007). Initially, the support group coordinator for the district contacted support group leaders and stated that the study sample should represent a variety of ages and occupations. Group leaders then informed potential participants about the study at support group meetings. All the potential participants approached agreed to take part in the study and none withdrew early. Before signing the consent forms, those willing to participate were given both written and verbal explanations of the purpose of the study. It was stressed that participation was entirely voluntary and that any healthcare they received would not be affected. The participants were reminded that they could withdraw from the study at any time, and they should not answer a question if they did not wish to. Support group leaders were included in the study sample so that their experiences could be explored. This also allowed the opinions of support group leaders to be compared with those of group members (who had not received the training offered by AMREF). To gain an overview of the situation in the district, five key informants were interviewed. Key informants were identified by AMREF’s support group coordinator for the district; they were: the district AIDS/STI coordinator; the district officer for children and child trafficking; two programme managers for the district’s largest HIV/AIDS support groups; and AMREF’s support group coordinator for the district. The key informants’ roles in the community meant that they were able to provide insight into the issues being researched and give context for the research to be placed in. Twenty-one HIV-positive women took part in the study. Thirteen of the women were aged between 40 and 53, and eight were aged between 20 and 39. All the women were Christians. Their level of education varied from four to 13 years of schooling. Seven women were married, two had boyfriends, and seven were widowed (of whom five had tested for HIV only after their husband had died from AIDS). The time since the women had learned that they were HIV-positive varied from three months to seven years; however, the majority had known their HIV-positive status for at least three years. Women had been members of support groups from between four months and four years. Data collection In-depth interviews and focus groups were the chosen methods for data collection. Focus groups were chosen because they are an effective method of promoting the

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discussion of sensitive topics (see Lindlof & Taylor, 2002). In-depth interviews allowed the participants to communicate their priorities and give detailed responses on the issues raised. Not all the participants spoke fluent English, so the interviews and focus groups were conducted in the local language, Kikamba. A 33-year-old female acted as interpreter. The interpreter was involved in social development projects in the community, and as such was well oriented about HIV-status disclosure and support group activities. The interpreter translated during the interviews, which allowed the interviewer to ask probing questions and elicit details about the incidents described. The focus groups were conducted by the interpreter entirely in Kikamba and translated afterwards; this allowed the discussion to flow freely. Two focus groups were conducted: each included seven support group members from the same support group and one support group leader. The focus group discussions lasted between two and three hours. Semi-structured interviews were carried out with three support group members and two support group leaders, with the aim of reaching data saturation. The semi-structured interviews lasted between 25 and 90 minutes. The following questions were used to structure the interviews and focus groups with the aim of increasing comparability of the findings (see Mays & Pope, 1995): 1. Why do women living with HIV choose to disclose their status? 2. Why do women living with HIV choose to withhold their status? 3. What are your experiences of HIV-status disclosure and/ or what are the experiences of people you know? 4. What are your opinions about the support groups? 5. Did the support groups influence your decision to disclose your HIV status? Analysis The focus groups and interviews were audio-taped and then translated and transcribed verbatim by a local youth worker, chosen for her fluency in English and Kikamba, high-level of education, and previous translation experience. The transcripts were then checked by the interpreter for accuracy and completeness against the original recording. The transcripts were thereafter analysed using a thematic approach. A thematic approach allowed the researchers to focus on the opinions of the participants (see Miles & Huberman, 1994). To prepare the data for thematic analysis, field notes were added to the transcripts, including descriptions of the participants’ emotions and body language. The transcripts were then read several times to look for patterns of thought, behaviour and experience (see Bernard, 2000). The text was subsequently annotated and colour-coded to identify emerging themes. The cut-and-paste technique was used to group quotations and annotations into their respective themes and sub-categories. Analysis was a continuous, iterative process and the codes were altered as data was collected and new themes emerged. To facilitate this process, additional themes were continuously compared

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with the existing themes (see Bernard, 2000). A limitation of thematic analysis is that researchers tend to ignore findings that are not going in the way of their reasoning (see Miles & Huberman, 1994). To limit this potential source of bias, the researchers endeavoured to look for other ways of organising the data and thus to find alternative themes that might lead to different findings. The frequency of certain opinions was counted in order to test possible bias, and the themes were discussed with the support group coordinator to determine how robust these insights were (see Miles & Huberman, 1994). Direct quotes from participants are included in the findings as examples of the themes identified. Ethical approval Study procedures were approved by Leeds University Educational Research Ethics Committee, the AMREF Support Group Coordinator for the district, the local hospital, and from the participating support groups. Findings During the thematic analysis, three main themes emerged regarding women’s experiences and the role of support groups in relation to HIV-status disclosure. These themes were: 1) motivations to disclose; 2) barriers to disclose; and 3) the role of support groups (see Table 1). The majority of women had disclosed their HIV status to 1–3 people other than healthcare workers and support group members. Most had disclosed before joining a support group. Only one participant had not disclosed to anyone else. Women who had disclosed had primarily told their mother or another female relative whom they felt close to. In terms of disclosure to partners, all the married women had disclosed to their husbands. Neither of the two women with boyfriends had disclosed to them. Only seven women had disclosed to people outside their immediate family; this included the four support group leaders who had also disclosed to the wider community. Theme 1: Motivations to disclose Women gave accounts of their motivations to disclose their HIV-positive status. Three sub-themes to this were identified (see Table 1).

Table 1: Women’s experiences of HIV-status disclosure in rural Kenya Disclosure experiences of four support group leaders and 17 support group members Themes Sub-themes 1. Motivations to disclose A duty to others Responsibility to the wider community Treatment adherence 2. Barriers to disclose Fear of slander and abandonment Experiencing discrimination 3. The role of support groups Knowledge and confidence Emotional support after disclosure Community education

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A duty to others Six women had disclosed when they had been very sick in order to secure care for their young children, in case of death: ‘That time I was very sick. I still had the baby. I would scream and say that I would die. I told them what I wanted to happen after my death, even all my aunts know…I was telling them to take care of my kids’ (support group leader, age 42). Almost all the participants felt that women have a duty to disclose to their partner, both to prevent HIV transmission and to encourage the partner to be tested: ‘I don’t want my husband to die early due to ignorance’ (subsistence farmer, age 33). Only one participant disagreed, stating that testing was her boyfriend’s responsibility and not hers: ‘It is not my responsibility [to disclose]; he [my boyfriend] can go and get tested just as I did’ (32-year-old support group member). The only other woman with a boyfriend stated that she wanted to disclose to him but did not feel ready, having only learnt her HIV status four months previously. Responsibility to the wider community Many women felt that public disclosure (i.e. disclosure to the wider community) is important as it may encourage others to be tested and discourage risk-taking behaviour. Some also suggested public disclosure may help reduce HIV/AIDS stigma in the community: ‘I would like to disclose to crusade to the youth. You know how they don’t like using condoms. I would love to do this to avoid re-infection, and kill fear and shame within my community’ (housewife, age 30). However, only the support group leaders plus one 40-yearold support group member had publicly disclosed. This particular support group member stated that she had already been rejected by her husband and family, so she no longer cared who she disclosed to. The support group leaders stated that their training had given them the confidence to publicly disclose; one explained: ‘When you are trained you lose self-stigma, you are released. Because of this you can talk to everybody, community and churches’ (support group leader, age 40). Most of the women agreed that public disclosure by a support group leader had reduced HIV/AIDS stigma within the community, hence making it easier for them to disclose at least to close relatives. Treatment adherence The women, and especially the key informants, consistently mentioned adherence to treatment as a motivation to disclose, particularly to a partner. Many women also stated that they had disclosed because they needed social support, predominantly healthcare when they had become sick: ‘And with the adherence, you have to disclose, because you have to be very strict with the time of taking drugs…. If I have not disclosed to you [husband], what will I do? Am I going under the bed? Or going out for the loo so I can take my drug?’ (support group leader, age 43). Some women stated that they had disclosed because their relatives were suspicious about their symptoms. A number of women had been tested for HIV only when they had visible symptoms and as a result believed others had

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guessed their HIV status: ‘They [my family] all know. But I have never uttered a word and told anyone. But they know, and they always show me that they know’ (widow, age 42). Theme 2: Barriers to disclose The women gave accounts of both personal and wider problems associated with disclosure; two sub-themes were identified from this (Table 1). Fear of slander and abandonment A major barrier to disclosure was fear of slander within the community, with the women reporting that HIV infection is associated with promiscuity and witchcraft. Many women had not disclosed to their families for fear of blame and rejection: ‘Like, where I come from, when you tell someone something like this you have given them a chance to go badmouthing you…. For instance, if I tell my mother-in-law, it will be a waste. She will just go ’round ruining me’ (widow, age 40). ‘You lose your friends and your people reject you; even your mother can reject you’ (housewife, age 29). Despite these fears, a number of women reported positive responses to their disclosure, including encouragement, acceptance and support: ‘She [my mother] told me whatever God brings your way, just receive it and don’t think much about it. She encourages me’ (subsistence farmer, age 36). The primary problem associated with disclosure to a partner was fear of abandonment, and this was closely tied to fear of losing financial support. The 32-year-old support group member who had not disclosed to anyone stated that she could not disclose for fear that her boyfriend would abandon her. The opinion that women fear being accused of extramarital affairs was also frequently articulated: ‘By the time you realise you’re infected he’ll put the blame on you, that you’re the one that brought it home’ (widow, age 50). Only one participant mentioned violence as a barrier to disclosure; this woman was a 40-year-old widow whose husband had died before she knew her HIV status. She was still living with her ex-husband’s brothers and parents and feared they would beat her up, although they had never been physically violent towards her before. All seven of the married women in the study had disclosed to their husbands, and three of them stated that their husband was supportive. However, only two of seven husbands had been tested for HIV despite knowing their wife’s HIV-positive status. Men’s reluctance to be tested was repeatedly mentioned by the key informants as a problem in the district. Experiencing discrimination Negative outcomes from HIV-status disclosure were common. Those mentioned most frequently were blame, rejection, and loss of confidentiality. The 32-year-old support group member who had not disclosed to anyone stated that she could not disclose as she feared that others would laugh at her. Several women regretted having disclosed and spoke about in-laws, particularly their mother-in-law, blaming them for bringing the infection into the home. A few women

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had been forced to leave home, often without financial or material support: ‘When they [my family] knew my status at home they had a meeting to decide to chase me away from home, and they booked for me a room in the market’ (hairdresser, age 39). Four of the seven married women reported blame and temporary or permanent separation from their husband: ‘But I did not sleep that day. I was thrown outside…. My husband said I was the one who had brought the sickness home and that I am the one who had killed the kids’ (subsistence farmer, age 45). The opinion that others were waiting for them to die was frequently articulated: ‘I was rejected by my parents and it reached a time my children also rejected me. My elder son tells me that I will die of AIDS’ (businesswoman, age 40). Several women also claimed that others had not believed them because they seemed healthy: ‘I’ve told many people, but they say it’s not true; they say I’m just pretending. They tell me that I’m healthy, that they can’t see anything wrong with me’ (support group member, age 40). Theme 3: The role of support groups The participants were asked whether HIV/AIDS support groups had impacted upon their experience of disclosure. Three sub-themes emerged from this theme. Knowledge and confidence ‘What we have been taught at the support group has been helpful about telling others’ (widow, age 42). ‘I disclosed [to my husband] after joining the support group. Seeing other people and sharing our problems…I felt confident and found the fear just left me’ (farmer, age 29). Support group leaders teach members about the benefits of disclosure and some women reported disclosing because of what they had learnt: ‘They [support group leaders] told me it’s a disease you can get without being immoral. That there are precautions and treatment. I decided to tell my mum and she just said to me — My daughter won’t you die? And I told her that we are educated on how to live…’ (subsistence farmer, age 36). Most women, however, believed that it was meeting other people living with HIV at support groups that had given them the confidence to disclose: ‘Being able to come here and meet others like me gave me confidence, and one day when I went home I sat down with my mother-in-law and told her about my status’ (housewife, age 33). One woman, age 39, stated: ‘Once you want to disclose, first you have to accept yourself, accept your status and accept the way you are…meeting others who are like me has helped.’ Conversely, one woman maintained that it did not matter what the support group had taught her because she would disclose to her boyfriend only ‘so that God does not count wrong against me!’ Emotional support after disclosure

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‘We tell members they have the right to live, they should not be stigmatised, they have the right to live, they are human beings’ (support group leader, age 45). ‘It gives me release to be able to come [to the support group] here, and rejoice with my friends, and when I go back home I feel refreshed’ (hairdresser, age 39). All the women agreed that they had received emotional support at their support group: ‘Sometimes we come to the support group crying and leave laughing.’ Several women stated that the support group helped them cope with stigma they experienced after disclosing their status: ‘Other members, they gave me the experience, the support, they give me everything so I am free from the stigma.’ Another woman said the support group had reduced her fear of gossip: ‘It has helped reduce my fear when you think others are gossiping about you.’ One participant felt that the emotional support she’d received helped reduce the conflict at home: ‘Because even if they abuse you — you don’t mind and are not upset with them.’ Community education ‘We do health education in schools, churches and even in the marketplace. Education shows people it’s a disease that you can get without being immoral’ (support group leader, age 41). ‘Yes, and let them [the community] all be educated, because they are still holding onto the old myths that if you are cut you will be infected, if you share a cup you will get infected; yes, they are still holding onto the old teachings, let them be changed and told’ (farmer, age 42). The women stated that community education and public disclosure by support group leaders had reduced HIV/AIDS stigma within the community: ‘Those that you [the support group leader] have enlightened do not behave negatively. They know it is just like malaria, diabetes, hypertension; it’s just like another disease’ (secretary, age 33). However, many expressed a desire for more community education about HIV and AIDS, stating that this was necessary to promote disclosure and thus reduce negative outcomes: ‘I want more education to the public so that when we are telling our loved ones they have already been educated’ (support group member, age 40). Discussion Theme 1: Motivations to disclose Some of the women disclosed due to a sense of duty to inform others of their HIV status, particularly to prevent HIV transmission to sexual partners and to encourage testing. This finding is supported by a study in Nairobi which concluded that motivations for disclosure will vary depending on the type of relationship between the person disclosing and the target of the disclosure (Miller & Rubin, 2007). Interestingly, only the married women in this study had disclosed to their partner, whereas those with boyfriends had not.

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Men’s subsequent reluctance to be tested for HIV indicates a need to assess the effectiveness of current initiatives aiming to promote early testing, not least because HIV-positive women may be more vulnerable to accusations of extramarital affairs if their partner is not likewise tested. Responsibility to the wider community as a motivation to disclose has not, to the authors’ knowledge, been previously reported in the literature regarding Kenya. In this study, most of the women felt that people should publicly disclose as this would encourage others to be tested and discourage risk-taking behaviour. Many participants also felt that public disclosure lowered HIV/AIDS stigma within the community. However, here, only four support group leaders and one support group member had publicly disclosed. Thus, it is not possible to conclude that a sense of community responsibility really does motivate women to disclose in practise; future research may seek to clarify this point. The support group leaders felt that the five-day training they received had encouraged them to disclose publicly. Future researchers may seek to shed light on whether training people living with HIV to become support group leaders does promote public disclosure. Future studies might also investigate the extent to which individual public disclosure influences HIV/AIDS stigma and the tendency for disclosure within the community. If support group leaders are effective in lowering stigma, investment in training might be a relatively inexpensive intervention with potentially far-reaching benefits. Some of the women felt pressured to disclose because their physical symptoms meant they could no longer conceal their HIV status. This finding has been reported previously (Serovich, Lim & Mason, 2008) and suggests that earlier HIV testing may give women more control over disclosure, which could mitigate some of the negative outcomes of involuntary disclosure. Several women felt they would be unable to take their antiretroviral medication consistently without disclosing to their partners and families. To the best of the authors’ knowledge, this has not been previously reported in Kenya. This may be because previous studies have focused on barriers to disclosure, rather than the motivations for it (Miller & Rubin, 2007). In addition, free antiretrovirals are not yet available in all rural areas, so for many women this motivating factor is not relevant (National AIDS Control Council [Kenya], 2008). The finding that women sometimes disclose because they need social support agrees with the Nairobi study by Miller & Rubin (2007) and studies in several sub-Saharan countries (e.g. Antelman, Fawzi, Kaaya, Mbwambo, Msanga, Hunter & Fawzi, 2001; Medley et al., 2004; King, Katuntu, Lifshay, Packel, Batamwita, Nakayiwa et al., 2008; Visser, Nufeld, De Villiers, Makin & Forsyth, 2008). In those studies, social support included nursing care, access to nutritious food, money for medicines, and resources to pay children’s school fees. This suggests that women with strong social support networks may be more inclined to disclose than those without them. It also implies that women who are more able to care for themselves may be less inclined to disclose.

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Theme 2: Barriers to disclose There were multiple problems associated with HIV-status disclosure. This study supports evidence that fear of abandonment among women in resource-poor settings is a major barrier to disclosing to a partner (Medley et al., 2004); in that setting, fear of abandonment is strongly tied to loss of financial support. This agrees with findings from a study of women in urban Tanzania (Maman, Council & Project, 2001), but, to the best of the authors’ knowledge, has not yet been reported in Kenya. This study corroborates evidence that HIV is a highly stigmatised disease in rural Kenya (see Medley et al., 2004; Ogden & Nyblade, 2005; Turan, Miller, Bukusi, Sande & Cohen, 2008). The women’s accounts of disclosure had a strong bias towards negative outcomes such as blame and rejection, and several of the participants regretted having disclosed. By contrast, a study carried out in urban Kenya (Grinstead et al., 2001), states that positive outcomes from disclosure occur more frequently than negative ones. It is possible that responses in the present study focused on negative rather than positive experiences due to recall bias. However, this study was carried out in a resource-poor rural area, a setting where negative outcomes from disclosure may be more common. Accordingly, initiatives promoting disclosure (such as support groups) should be implemented only after taking account of the local cultural and economic context. Such initiatives should aim to protect those who disclose, for example by dispelling stigmatising beliefs at large in the wider community and not just among people living with HIV. Evidence obtained from urban Kenya states that fear of violence is a major barrier to disclosing to a partner (Farquhar, Mbori Ngacha, Bosir, Nduati, Kreiss & John, 2000). In the present study, only one participant mentioned violence, which could suggest low background levels of violence (cf. Maman, Campbell, Sweat & Gielen, 2000). Alternatively, women may have avoided mentioning partner violence if it is a cultural taboo; another possibility is that violence is considered to be a lesser threat than other potential outcomes, such as abandonment. Future research might specifically explore partner violence and its impact on HIV-status disclosure. Theme 3: The role of support groups The positive impact of HIV/AIDS support groups has been widely reported for other populations. For instance, studies from Iran on breast cancer (Montazeri, Jarvandi, Haghighat, Vahdani, Sajadian, Ebrahimi & Haji-Mahmoodi, 2001) and Taiwan on postnatal depression (Chen, Tseng, Chou & Wang, 2000) showed significant benefits for members of support groups. Both studies found a significant association between psychological and psychosocial wellbeing. And a recent study from Thailand (Liamputtong, Haritavorn & Kiatying-Angsulee, 2009) showed the positive impact of support groups for HIV-positive women; the authors note that women found emotional support and felt socially accepted within the support group. The current study, however, did not investigate the impact of support groups on disclosure to people outside the support group. The statement by WHO that support groups may

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help people living with HIV to develop the confidence to disclose (UNAIDS/WHO, 2000) is supported by this study. Specifically, this study found that women gained confidence to disclose to relatives and partners after meeting other people living with HIV at their support group. This is illustrated by the case of the only woman to have not disclosed her HIV status to anyone (i.e. the 32-year-old who had only recently joined the support group). This is also similar to the findings of a multi-country study carried out in sub-Saharan Africa, in which interaction with other people living with HIV gave women more courage to disclose their HIV status than when they had felt alone in their situation (Greeff et al., 2008). In this study, the women largely believed they had gained emotional support at their support group, which they felt may have assisted them to cope with the negative outcomes of disclosure. However, it must be noted that most of the women had disclosed to at least one other person both before and after joining a support group. Therefore, it may have been difficult for them to separate the influence of the support group from the attitudes and experiences they had before joining the group. It is also possible that other variables played a role, such as how long the individual had been a member of the group; time since their diagnosis; and support outside the group. Future research may seek to investigate the estimation that support groups give members confidence and emotional support and thereby encourage disclosure and lead to improve outcomes. Lack of HIV-related knowledge within the community was highlighted in the women’s accounts of HIV-status disclosure. For example, some women were not believed when they disclosed because they had no symptoms of HIV-related illness, which suggests a lack of community knowledge about the progression of HIV infection to AIDS illness. In addition, some women felt others were ‘waiting for them to die,’ implying a lack of awareness about the effectiveness and/or availability of ART within the community. Some women expressed a desire for increased community education about HIV and AIDS, as they felt that this would lower stigma and might reduce negative outcomes. Support group leaders are an invaluable source for disseminating information about HIV and AIDS within the community. Rural populations are dispersed, however, and the number of support group leaders no doubt insufficient to provide education to everyone. It is therefore recommended that support group leaders work closely with churches, schools, local chiefs, and self-help groups to provide information about HIV and AIDS. Even so, knowledge alone may not necessarily influence levels of stigma, and future research may usefully clarify this. Limitations of the study include its small sample size. The sample was also limited to those women who sought out membership in a support group and who remained as members. Women who had previously joined a support group and then left were not included in the study. It is possible that these women may not have felt the group was helpful in making their decisions about disclosure. Studies on cancer support groups in the United Kingdom and Australia noted that an individual’s need plays an important

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role in continuing or discontinuing their membership (Docherty, 2004; Ussher, Kirsten, Butow & Sandoval, 2006). In addition, more time may be required to gain a comprehensive understanding of the factors influencing disclosure. The authors are aware of the complexity of HIV-status disclosure and acknowledge that not every aspect of disclosure could be explored within a once-off interview or focus group discussion. Social desirability bias is particularly relevant to this study because of the sensitive nature of the topic discussed. Furthermore, the women may have felt inhibited about voicing negative opinions about the support group because the data were collected at the group’s meeting places, and a support group leader was present in each focus group discussion. To reduce this source of bias, the researchers endeavoured to create an atmosphere that encouraged open answers by maintaining a friendly and non-judgemental manner. Conclusions This study used qualitative research methods to gain insight into rural Kenyan women’s experiences of disclosing a positive HIV status. There were multiple problems associated with disclosure. The research was carried out in a resource-poor, rural setting, and negative outcomes such as blame and rejection were common. In order to protect those who are willing to disclose, initiatives promoting disclosure, such as support groups, must take account of the financial and social implications for women who reveal their HIV status. There has been a dramatic rise in the number of HIV/ AIDS support groups in Kenya in the last decade. This study found that members of support groups believed that they had gained confidence since joining a group. Some women in this study suggested that this may have helped them to disclose their HIV status to relatives and partners. Most of the women expressed the opinion that their group provided emotional support. And many of these women felt this emotional support assisted them to cope with the negative outcomes of disclosure. Acknowledgements — Thanks go to Catherine Muteti and Martin Opondo for their assistance, and to the study participants for their generosity and willingness to share their stories, despite gaining little for themselves. The authors — Hannah Gillett holds a degree in international health from the Nuffield Centre for International Health and Development (United Kingdom) and is currently studying medicine at Newcastle University. Jennifer Parr is a teaching fellow at the Nuffield Centre for International Health and Development. She is an anthropologist with an interest in reproductive health and health system reforms.

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