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Abstract HIV prevention and service programmes have long either ignored or overlooked lesbians. The experiences of lesbians with HIV have similarly been unrecognised and unreported.
This erasure has contributed to the invisibility of lesbians in relation to HIV and related health risks. This community participatory study, based on in-depth interviews with twenty-four self-identifying African lesbians living with HIV in South Africa, Zimbabwe and Namibia, focuses on their personal experiences and circumstances.
Women's experiences shed light and challenge popular notions around lesbian risk. In particular among this group are lesbians who self-report exclusive sexual relationships with women. For these women, experiences of living with HIV are challenging as they struggle to understand the possibility of female-to-female transmission. While battling with their own perceptions of invulnerability and accepting their HIV positive status, they have to deal also with wide-ranging misconceptions about risk.
Health services and health providers are encouraged to respond to the health needs of lesbians living with HIV. Women in same-sex relationships and lesbians remain invisible in HIV research, in prevention programmes as well as to health care providers.
Myths and misconceptions about lesbian and same-sex practising women's immunity have come to be believed by health care providers as well as by lesbians themselves Wells and Polders For example, Richardson argues that because of exclusion from HIV prevention messages, many lesbians believe they will not get HIV and thus are ignorant or reject safer sex strategies Reddy, Sandfort and Rispel The high rates of HIV amongst lesbians and bisexual women were attributed to alarming levels of rape and sexual violence among women and lesbians, particularly in South Africa, as well as unsafe transactional sex with men generally Polders and Wells There is now a developing critical corpus on MSM men who have sex with men and HIV in several high impact academic journals.
However, there has been a significant lack of attention to the experiences of same-sex practising women or lesbians in relation to HIV in the African continent as a whole. Such neglect of women's experiences within research reflects a more widespread gender-bias in the area where women continue to experience barriers to care and support Jarman, Walsh and De Lancy More specifically, lesbians are overlooked in HIV research and prevention strategies because of the failure to recognise and appreciate the social and behavioural complexity of lesbians' lives Dolan and Davis or that women are not all the same epidemiologically Mora and Monteiro Lesbian sexual behaviour and HIV The assumption of a close association between sexual behaviour and sexual identity can also be seen as having contributed to lesbian neglect Formby ; Power, McNair and Carr ; Richardson Lesbians are perceived as not to be at risk for HIV because it is assumed that they engage in sexual activity only with other women.
This assumption overlooks a person's sexual history and the reality that sexual identity is not indicative of nor does it directly translate to sexual behaviour. It is therefore not self-evident that a lesbian's sexual history excludes sex with men or various other sexual practices Roberts et al.
Lesbians are not immune to these conditions. As previous research has shown, cultural stigma, stereotypes and prejudice contribute to making lesbians living with HIV invisible Wells and Polders We maintain that to pay attention to the experiences of lesbians living with HIV may assist in transforming general understandings of HIV transmission and consequently challenge assumptions about lesbian risk.
Methods The study followed a community participatory approach. From the onset, the study was invested in the transfer of skills and capacity building of local LGBT organisations in the areas where research was conducted.
Such an approach seeks to enable communities to participate in the analysis of their own reality and to promote social transformation for the benefit of the participants. Key to our understanding is people's involvement in decision-making processes, designing, implementation, sharing of benefits, monitoring and evaluation of projects Kumar The process also entails elements such as information giving, consultation, participation for material incentives and self-mobilisation.
Central to such an approach is the role of community capacity and its relationship to prevention practice and outcomes. Participants and study setting Eligibility criteria for study participants were that they were: Semi-structured in-depth interviews were conducted from October to February with twenty-four 24 self-identifying lesbians living with HIV in Namibia, South Africa and Zimbabwe.
The majority 16 of the participants lived in South Africa and four in the two other countries. The country's progressive laws make this possible.
There were four South African organisations represented in the research group covering different provinces of the country compared to only one organisation each in Namibia and Zimbabwe. Due to organisational capacity between four to six participants from each organisation were recruited to the study. Ethical considerations Ethical considerations were pivotal to this research. During training sessions, the whole group discussed in detail the importance of informing participants about their involvement in the study and obtaining informed consent.
Confidentiality was strongly emphasised, as many women live in contexts were both their sexual orientation and HIV positive status are highly stigmatised. The rights of participants not to answer any question they were uncomfortable with were also discussed and upheld. Each organisation also ensured that there were possibilities for referrals to relevant partner organisations for those participants who experienced distress during and after the interview.
Written consent was obtained from all participants. Preparatory activities Interviewers were members of local LGBT organisations in the three countries where the research was carried out. All interviewers attended training workshops facilitated by the research team which included the authors. The training sessions and discussions included topics on research ethics, recruitment techniques and conducting interviews.
The training sessions produced well-crafted interview schedules that could be used in all settings while also tailored to address context-specific realities. Particular attention was paid to the terminologies used and how these would be locally translatable or not. Most interesting was the rejection of the term WSW women who have sex with women because of its alienating features in many of the contexts.
Members argued that while they saw its relevance in public health discourse, it was not used among their organisations' constituencies and thus not relevant for this research. Therefore, in relation to the research findings, we do not talk about women who have sex with women. The term lesbian, with all socially ascribed local nuances and contextual differences, was more appreciated and used by most organisations as well as the people they served. Through rigorous training and instrument-development sessions, members debated ways in which particular questions could be insensitive, contextually irrelevant or alienating.
The structured interview schedule and consent forms were piloted among fifteen individuals from Botswana, South Africa, Zimbabwe and Namibia recognising that in the end we are reporting on data produced by three countries. Each of the partner organisations had a focal contact person who was responsible for the study in their area.
The research process also included a regular monitoring process as well as regular support to interviewers for the duration of the study. As indicated earlier, the benefit of collaborating with community-based organisations is that they know and understand the dynamics of their own contexts and could implement the research in ways that are sensitive and culturally relevant.
For many organisations, the physical safety and privacy of the location where the interview took place, as well as the safety of the participants had to be considered due to various threats, violence and hate crimes experienced by lesbians in African countries Mkhize et al.
For similar reasons, recruitment also had to be carefully considered and snowballing or chain referrals were the most effective strategies in accessing known and unknown members of the population.
As living with HIV is still highly stigmatised in the areas where research was carried out, fieldworkers had to use discretion during recruitment. Most research participants were known members of organisations who were already accessing HIV and other health-related services. Others were recruited from partner organisations or via networks of people living with HIV. In Zimbabwe in particular, because of state-wide homophobia and targeting of lesbian and gay people, recruitment of participants had to be clandestine.
Data collection The interview schedule included the participant's biographical information, sexual history, experiences with HIV testing, knowledge of own infection or transmission route, experiences with disclosure, personal and social experiences of living with HIV, as well as experiences with treatment if applicable , care and support.
Trained members of various LGBT organisations in the respective countries conducted face-to-face interviews. The duration of interviews ranged from 45 minutes to three hours. The interview schedule was in English but the interviews themselves were carried out in the participant's chosen language. All interviews were audio recorded, transcribed and, as far as needed, translated back into English. Where vernacular was used, the interviewers as well as another member of the organisation conducted back-checks on language and content for all transcripts that related to them.
No names of participants were recorded during interviews. All participants were given codes and all transcripts were coded. Conducting these interviews turned out to be challenging. For many participants and fieldworkers this research was the first time they had been exposed to talking in depth about HIV, infection and the experiences of living with the disease.
A final training session post the data-collection phase included a robust debriefing session for interviewers. A few had experienced difficulties interviewing people they knew about their experiences of living with HIV. Data analysis Data were analysed manually. This was important as it allowed for members of organisations to participate in interrogating the data during follow-up training sessions.
Organisations raised questions and as a team we explored themes emanating from the data. Themes were developed to draw similarities and contrasts in the experiences of the participants. Thematic analysis also allowed for an in-depth view of how participants experienced their lives. A dominant theme was finding out about one's HIV positive status. Focusing on this theme revealed the many ways in which lesbians experience living with HIV. Anger, fear of disclosure and confusion about how transmission occurred all related to participants' experiences of living with HIV.
Findings We begin by describing the general characteristics of the research participants. The women were aged between 22 and 48 years. Of the twenty-four participants, six had tertiary education qualifications, another six had completed secondary education school-leaving certificates, with two of them studying towards a tertiary qualification.
A third of the participants had not finished high school and half of them had a primary school education. Employment levels were similarly low. Only seven participants were in full-time employment, and only four had private health insurance. Most of the participants were unemployed.
Six participants were single with no partners and five reported that they were not sexually active at the time of the interview. Most women lived with their partners and two were married. Participants self-identified as lesbian and mostly reported engaging in sexual relationships exclusively with women. Two of the participants had a regular male partner and identified as lesbian 2 or sometimes bisexual. The majority 16 of the women had children from previous relationships with men who lived with them.
All participants had been living with HIV for periods varying from four months to 17 years. At the time of the interview, eight participants had been living with HIV for more than ten years. The majority of the participants 17 self-reported seeking an HIV test because of an illness or signs thereof. For a few, a partner or a child's illness or death in a few cases made them seek an HIV test.