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Prevention of mother-to-child Transmission and HIV Treatment programmes were scaled-up in resource-constrained settings over a decade ago, but there is still much to be understood about women’s experiences of living with HIV and their HIV disclosure patterns. This qualitative study explored women’s experiences of living with HIV, 6-10 years after being diagnosed during pregnancy. The area has high HIV prevalence, and an established HIV treatment programme. Participants were enrolled in a larger intervention, “Amagugu”, that supported women (n = 281) to disclose their HIV status to their children. Post-intervention we conducted individual in-depth interviews with 20 randomly selected women, stratified by clinic catchment area, from the total sample. Interviews were entered into ATLAS.ti computer software for coding. Most women were living with their current sexual partner and half were still in a relationship with the child’s biological father. Household exposure to HIV was high with the majority of women knowing at least one other HIV-infected adult in their household. Eighteen women had disclosed their HIV status to another person; nine had disclosed to their current partner first. Two main themes were identified in the analyses: living with HIV and the normalisation of HIV treatment at a family level; and the complexity of love relationships, in particular in long-term partnerships. A decade on, most women were living positively with HIV, accessing care, and reported experiencing little stigma. However, as HIV became normalised new challenges arose including concerns about access to quality care, and the need for family-centred care. Women’s sexual choices and relationships were intertwined with feelings of love, loyalty and trust and the important supportive role played by partners and families was acknowledged, however, some aspects of living with HIV presented challenges including continuing to practise safe sex several years after HIV diagnosis.
This study was conducted in northern KwaZulu-Natal, at the Africa Centre for Health and Population Studies (www.africacentre.com). The setting is rural, resource-limited and predominantly Zulu speaking (Bärnighausen, Tanser, Malaza, Herbst, & Newell, 2012; Tanser et al., 2008). In 2001 the Department of Health, in partnership with the Africa Centre, launched a PMTCT programme and, in keeping with policy at the time, single-dose Nevirapine was offered to HIV-infected women during labour, and their infants post-partum. Since then PMTCT regimens have changed, and now all HIV-infected pregnant women, not already on treatment, receive ART at their first antenatal visit (WHO, 2013). Since 2004 an HIV Programme has provided free HIV treatment and care in a devolved programme at primary health care clinics in the area (Bland & Ndirangu, 2013; Houlihan et al., 2010; Janssen, Ndirangu, Newell, & Bland, 2010). Initially, the eligibility criteria for ART was a CD4 cell count of ≤200 cells/ml, but since 2014 has been extended to include all those with a CD4 cell count of ≤500 cells/ml (WHO, 2013). This qualitative study was undertaken with a sub-sample of women who had participated in two intervention studies, one to support exclusive breastfeeding to reduce vertical transmission of HIV (“VTS”; Bland et al., 2010) and the other to support maternal HIV disclosure (“Amagugu”; Rochat, Arteche, Stein, Mkwanazi, & Bland, 2014). The aim of this qualitative research was to better understand women’s experiences of living with HIV over a long period of time, and to explore their experiences of participating in the VTS and Amagugu interventions. A two-part interview guide was developed: Part One was open-ended and explored women’s experiences of being HIV-infected since their diagnosis in the VTS and is the subject of this manuscript. Part Two focused on their experiences of participating in the Amagugu intervention, the subject of a separate analysis. The interview started with an open-ended narrative and then included topic area probes. The open-ended question was: “Tell me about your life since we last saw you in the VTS”. Through these interviews we sought to address less understood psychosocial topics about women of childbearing age, highlighted in the literature, including HIV testing during pregnancy, safe sex negotiations and experiences of living with HIV (McGrath, Richter, & Newell, 2013; Rochat et al., 2006; Varga, Sherman, & Jones, 2006). The probes explored the following: HIV-infected women included in these analyses were a sub-sample of participants enrolled in the Amagugu study, who had received support to disclose their HIV status to their 6- to 10-year-old child (Rochat, Mkwanazi, & Bland, 2013; Rochat et al., 2014). Women had first been tested for HIV in the local PMTCT programme and had known their HIV status for at least six years (Mkwanazi et al., 2008). The Amagugu disclosure intervention targeted the VTS index child specifically, but mothers were encouraged to disclose their status to their other children post-intervention. Resources and time available determined the initial sample size and we purposefully selected 20 participants from five of the nine clinic areas in which the Amagugu study operated, representing urban and rural settings. After completion of the 20 interviews a preliminary round of data analysis was undertaken and it was concluded that saturation had been reached. Socio-demographic and disclosure data were collected during a baseline survey in the Amagugu intervention. Two months after completing the intervention one of the researchers (NM) contacted the sample of women by telephone, explained the qualitative study and requested an appointment to conduct individual in-depth interview; all 20 women agreed to participate and provided written, informed, consent. The in-depth interviews lasted approximately 60 minutes at the women’s homes were tape recorded, transcribed verbatim and translated from isiZulu to English by NM. All interviews were read several times for familiarity with the data and the transcripts were entered into ATLAS.ti computer software for coding of common themes (Friese, 2012). NM analysed the interviews by category to determine common elements, patterns and themes within each participant’s interview. These were coded and compared across interviews to determine dominant thematic areas within the content areas. To ensure researcher reflexivity, NM, who is herself a Zulu woman, kept detailed daily notes of personal reactions to, and reflections on, interview content, which might inform interpretation bias. Transcripts were then independently reviewed by the second author (TJ) after which all three authors reviewed the results to reach consensus on the most salient themes, their organisation and to explore aspects of researcher reflexivity.
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