The Amagugu intervention: a qualitative investigation into maternal experiences and perspectives of a maternal HIV disclosure support intervention in rural South Africa.

The World Health Organization recommends disclosure of parental HIV to children aged 6-12 years. The maternal HIV-disclosure intervention (Amagugu), a lay counsellor-led, home-based intervention with six sessions, was implemented. The intervention included provision of disclosure tools, training and support for mothers, a family session and health promotion clinic visit for mothers and children. Amagugu demonstrated success as a maternal disclosure support programme but less is known about the experiences of participants. A sub-sample of HIV-infected mothers (n = 20) with primary school-aged HIV-uninfected children, from Amagugu, was purposely selected. Using semi-structured interviews and interview-guide, we explored maternal perceptions of disclosure prior to participation and experiences of participating in Amagugu. Audio-recorded interviews conducted in participants' homes, in isiZulu, were transcribed, and content analysis was undertaken. The most common reasons for prior non-disclosure were concerns about children's developmental capacity to understand HIV, fear of HIV-related stigma towards mothers and their families, and lack of skills to undertake disclosure. Intervention materials, rapport with counsellors, and flexibility of the proposed disclosure process motivated mothers to participate. While expressing satisfaction with the intervention, some mothers remained concerned about their children's understanding of HIV and ability to maintain confidentiality. Mothers also requested support in discussing sex-related topics with their children. Despite prior high rates of disclosure to other adults, mothers had little awareness about the importance of disclosure to children and lacked skills to undertake this. The intervention approach, rapport with counsellors, and practicality of the materials, helped overcome child disclosure barriers. Mothers reported their children as very supportive following disclosure and stated they would advise other women to disclose to children for practical support around HIV treatment adherence. This qualitative evaluation suggests that mothers with primary school-aged children may require structured support when disclosing to children, which could be achieved through supportive home-based counselling and user-friendly materials.

Living with HIV, disclosure patterns and partnerships a decade after the introduction of HIV programmes in rural South Africa.

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.

Rapid testing may not improve uptake of HIV testing and same day results in a rural South African community: a cohort study of 12,000 women.

BACKGROUND: Rapid testing of pregnant women aims to increase uptake of HIV testing and results and thus optimize care. We report on the acceptability of HIV counselling and testing, and uptake of results, before and after the introduction of rapid testing in this area. METHODS AND PRINCIPAL FINDINGS: HIV counsellors offered counselling and testing to women attending 8 antenatal clinics, prior to enrolment into a study examining infant feeding and postnatal HIV transmission. From August 2001 to April 2003, blood was sent for HIV ELISA testing in line with the Prevention of Mother-to-Child Transmission (PMTCT) programme in the district. From May 2003 to September 2004 women were offered a rapid HIV test as part of the PMTCT programme, but also continued to have ELISA testing for study purposes. Of 12,323 women counselled, 5,879 attended clinic prior to May 2003, and 6,444 after May 2003 when rapid testing was introduced; of whom 4,324 (74.6%) and 4,810 (74.6%) agreed to have an HIV test respectively. Of the 4,810 women who had a rapid HIV test, only 166 (3.4%) requested to receive their results on the same day as testing, the remainder opted to return for results at a later appointment. Women with secondary school education were less likely to agree to testing than those with no education (AOR 0.648, p<0.001), as were women aged 21-35 (AOR 0.762, p<0.001) and >35 years (AOR 0.756, p<0.01) compared to those <20 years. CONCLUSIONS: Contrary to other reports, few women who had rapid tests accepted their HIV results the same day. Finding strategies to increase the proportion of pregnant women knowing their HIV results is critical so that appropriate care can be given.

Early cessation of breastfeeding to prevent postnatal transmission of HIV: a recommendation in need of guidance.

AIM: Early and rapid cessation of breastfeeding has been recommended by WHO to reduce mother-to-child transmission of HIV. This study assessed how HIV-infected mothers planned and experienced breastfeeding cessation as part of an HIV prevention strategy and how counsellors facilitated this process. METHODS: A qualitative study was conducted among HIV-infected mothers and counsellors from local clinics and an intervention research project in Durban, South Africa. RESULTS: Mothers enrolled in the research setting reported many success stories in contrast to mothers attending routine services. Consistent counselling and ongoing support from counsellors facilitated this, though specific advice on how to stop breastfeeding and introduce complementary feeds was inadequate amongst both sets of counsellors. Few mothers had a plan for what they were actually going to do on the day when they had decided to stop breastfeeding. Their primary motivation for wanting to rapidly stop breastfeeding, even with the difficulties involved, was to avoid infecting their child with HIV. Both counsellors and HIV-infected mothers expressed concern about practical issues, including social consequences, associated with early cessation. Mothers who had stopped breastfeeding offered some, albeit limited, recommendations to assist and guide other women. CONCLUSION: The experiences of HIV-infected mothers planning for and stopping breastfeeding early illustrate the complexity of this recommendation and demonstrate that counsellors are ill-prepared to support mothers accomplish this safely. Guidance that acknowledges the cultural context and psychological stresses is urgently needed to direct policy, training and service delivery.