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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.
This research took place at the Africa Centre for Population Health (Africa Centre), now Africa Health Research Institute (AHRI) (www.ahri.org). The research community is predominantly rural, isiZulu-speaking and impoverished, with one peri-urban area (Tanser, Hosegood et al. 2008). HIV prevalence amongst women attending antenatal clinics was estimated at 35% in 2012 (Department of Health 2012). Prevention of Mother-to-Child Transmission services were implemented in the sub-district in 2001, and an HIV treatment and care programme providing antiretroviral therapy (ART) through public health facilities, was introduced in 2004 (Houlihan et al. 2010). In this qualitative study (Mkwanazi et al. 2015), we purposely recruited a sub-sample of twenty HIV-infected women, who were part of the larger Amagugu intervention evaluation (2010–2012) of 281 HIV-infected women and their HIV-uninfected 6–10-year-old children (Rochat et al. 2014). To be eligible to participate in this qualitative study the women had to have been tested for HIV during pregnancy (Mkwanazi et al. 2008) as part of the Vertical Transmission Study (VTS) (Bland, Coovadia et al. 2010) and to have participated in Amagugu. The sample size was determined by the time and resources available, and the expectation of reaching saturation with an estimated sample of 20–30 mothers (Mason 2010). Geographical area served as the main selection criteria to ensure participation of mothers across a variety of settings within the research population. The 20 women were purposely selected from nine geographic areas representing both peri-urban and rural settings. While mothers were purposely selected to represent all geographic areas, within each geographic area the mothers selected for the qualitative interview were randomly selected from the pool of mothers available. The researcher, using a list of participant identifiers (IDs), selected each tenth participating ID—by area—using a round robin technique until 20 participants had been selected across all areas. After completion of the 20 interviews a preliminary round of data analysis was undertaken, and the authors concluded that saturation had been reached, and no further mothers were recruited. The intervention included six home-based counselling sessions, led by a lay-counsellor. The counsellor provided the mother with specifically designed age-appropriate materials and tools to use during disclosure with the child. The counsellor did not intervene directly with the child; instead they provided training and support to the mother who then disclosed to her child independently. The sessions and the conceptual framework by which each session contributes towards disclosure are summarised in Figure 1, and a detailed description of the intervention is available in open access elsewhere (Rochat et al. 2016). By completion of the Amagugu intervention 170 (61%) women had fully disclosed their HIV status to their children using the words ‘HIV’ and 110 (39%) had partially disclosed their HIV status using the words ‘virus’ or ‘illness’(Rochat et al. 2014; Rochat et al. 2015). Outline of the home-based sessions in the Amagugu Intervention with expected behaviour change paths (Rochat et al. 2016) Interview guide The first author, a PhD candidate who is isiZulu speaking and from the local area, contacted each participating mother by phone and scheduled an appointment for a home visit to explain the study and invite participation. At this home visit the researcher obtained written consent, and immediately completed the semi-structured interview. The semi-structured interview guide addressed specific questions regarding women’s participation in the Amagugu intervention and their experiences of using the disclosure materials. All 20 women who were contacted and approached agreed to participate, and granted permission for the interviews to be audio-recorded. Interviews took place in the women’s homes, two months after completion of the Amagugu study, and each woman was interviewed once for approximately one hour. The first author also took extensive notes of non-verbal cues, and observed the home surroundings during the interviews, to inform the interpretation of the results. Additional data were available and extracted (with participant consent) for each woman participating in the qualitative study from the main Amagugu database, including socio-demographic data collected at baseline in the Amagugu study. Data collected post-disclosure on what the women enjoyed most about the intervention were extracted from a post-disclosure interview which was part of the Amagugu study. Using the semi-structured interview guide, content areas, including motivations for participating in the intervention, whether mothers perceived the intervention to be valuable and relevant, their views on the intervention package, and children’s reactions following disclosure, were explored. The study was approved by the relevant institutions.” with lines 97-99 on page 8, “The study was approved by the Biomedical Ethics Committee of the University of KwaZulu-Natal (BF 144/010) and the Human Research Ethics Committee of the University of Witwatersrand (R14/49). The first author (NM) transcribed the audio-recordings verbatim and translated them from isiZulu to English. To familiarise herself with the data NM listened to the audio-recordings, read and re-read the transcripts several times (Burnard 1991), and developed a code list derived from the literature. After a thorough review of all data, the two co-authors independently generated their own code lists. Preliminary findings were presented and discussed amongst the three authors in an analysis meeting. The three code lists were discussed, reviewed to reach consensus and the final list was adjusted accordingly to reflect the thematic areas identified. Each mother’s data were organised to reflect her specific content areas based on responses to questions in the interview guide. NM then studied the content of the transcripts looking for patterns within data chunks across all women linked to each of the specific questions in the interview guide and the thematic areas raised by the mothers in response to these questions. The coding approach was deductive, based on the interview questions in the guide which were developed to cover common areas in the patient engagement literature. In reviewing the data the researchers made an exhaustive code list of all the participants’ responses. This list was then summarised into a code book which was used to code all the transcripts and make comparisons across the participants to determine which experiences were common for most of all participants. A further data analysis meeting was convened and consensus reached on the main research findings.
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