Communication about HIV and death: Maternal reports of primary school-aged children’s questions after maternal HIV disclosure in rural South Africa

Introduction Children’s understanding of HIV and death in epidemic regions is under-researched. We investigated children’s death-related questions post maternal HIV-disclosure. Secondary aims examined characteristics associated with death-related questions and consequences for children’s mental health. Methods HIV-infected mothers (N = 281) were supported to disclose their HIV status to their children (6–10 years) in an uncontrolled pre-post intervention evaluation. Children’s questions post-disclosure were collected by maternal report, 1–2 weeks post-disclosure. 61/281 children asked 88 death-related questions, which were analysed qualitatively. Logistic regression analyses examined characteristics associated with death-related questions. Using the parent-report Child Behaviour Checklist (CBCL), linear regression analysis examined differences in total CBCL problems by group, controlling for baseline. Results Children’s questions were grouped into three themes: ‘threats’; ‘implications’ and ‘clarifications’. Children were most concerned about the threat of death, mother’s survival, and prior family deaths. In multivariate analysis variables significantly associated with asking death-related questions included an absence of regular remittance to the mother (AOR 0.25 [CI 0.10, 0.59] p = 0.002), mother reporting the child’s initial reaction to disclosure being “frightened” (AOR 6.57 [CI 2.75, 15.70] p=<0.001) and level of disclosure (full/partial) to the child (AOR 2.55 [CI 1.28, 5.06] p = 0.008). Controlling for significant variables and baseline, all children showed improvements on the CBCL post-intervention; with no significant differences on total problems scores post-intervention (β -0.096 SE1.366 t = -0.07 p = 0.944). Discussion The content of questions children asked following disclosure indicate some understanding of HIV and, for almost a third of children, its potential consequence for parental death. Level of maternal disclosure and stability of financial support to the family may facilitate or inhibit discussions about death post-disclosure. Communication about death did not have immediate negative consequences on child behaviour according to maternal report. Conclusion In sub-Saharan Africa, given exposure to death at young ages, meeting children's informational needs could increase their resilience. The research was conducted at the Africa Health Research Institute (AHRI) previously known as the Africa Centre for Population Health, or Africa Centre) in South Africa (2010–2012). The area is mostly rural, has a high HIV prevalence and incidence (Zaidi et al., 2013) and a successful HIV Treatment and Prevention programme, with provision of free drugs and clinical care since 2004 (Houlihan et al., 2011). Amagugu was found to be culturally acceptable and feasible when initially tested in a small pilot study (Rochat et al., 2013). A non-experimental evaluation design was chosen to explore whether this intervention approach was feasible, acceptable and increased rates of disclosure, and to examine factors associated with disclosure in the local context, prior to designing a randomised controlled trial. The design followed the guidelines for complex interventions (Craig et al., 2008) using validated measures, including multiple data collection points, and collecting qualitative data to inform the development of a randomised controlled trial protocol ({"type":"clinical-trial","attrs":{"text":"NCT01922882","term_id":"NCT01922882"}}NCT01922882). Amagugu re-enrolled HIV-infected mothers with HIV-uninfected children aged 6–10 years who had been part of a large infant feeding study (Vertical Transmission Study -VTS) previously conducted at the Africa Centre, 2001–2006 (Bland et al., 2010). We approached mothers who at the end of VTS were known to be HIV-infected with an HIV-uninfected child (Fig. 1). VTS mothers had tested for HIV during pregnancy, received antenatal and postnatal counselling, were assessed at two years postnatally, including re-testing for HIV and consenting to be re-contacted for future studies. In this Amagugu study the VTS child was purposely selected as the participating child with whom the mother would undertake the disclosure intervention, given their appropriate age, and known HIV status (HIV-uninfected and aged 6–10 years at enrolment). Additional inclusion criteria required that mother and child were in reasonable physical and mental health; mother was living in the study area with her child, and, if migrant, resided with the child for ≥2 nights per week, to ensure support during the disclosure period. Consort diagram representing participants enrolled into the study. Of an available pool of 525 mothers 136 (26%) were ineligible (due to death, relocation) and 14 (3%) were un-traceable. Of 375 women approached to participate, 291 (78%) enrolled (see Fig. 1). Amongst enrolees, 10 (3%) withdrew during the study, 281 completed follow-up. The 53 Amagugu non-participators (refusals and not available for participation) were more likely to be younger than participators (M 34.7 years; M 37.0 years, p = 0.003), although the difference was small. No other significant differences were found in maternal IQ, education, employment, relationship status, antiretroviral therapy (ART), child age or gender. Written informed consent was obtained from mothers and assent from children. Ethical approval was obtained from the Biomedical Ethics Committee of the University of KwaZulu-Natal (Ref: BF 144/010). The content and intervention approach (Rochat et al., 2013), and the conceptual framework (Rochat et al., 2016), have been described elsewhere and are summarised in Supplementary Fig. S1. Avoidant coping is common in HIV-infected mothers and can impact on parenting behaviours (Allen et al., 2014). The intervention aimed to shift the mother to a more active coping style, changing parenting behaviour towards disclosure, health education, and care and custody planning for the child. While structured, the intervention allowed mothers to adjust content (such as level of disclosure) to suit their personal circumstances, readiness and family needs. Lay-counsellors provided training and support to the mother. They did not intervene with children directly, instead the mother communicated with her child independently, promoting parental empowerment. Data were collected at four time points: a baseline assessment including psychometric assessments; two short structured interviews (the first one week after the disclosure event – the “post-disclosure interview”; the second one week following a health promotion visit to the local clinic – the “post-clinic interview”); and an endpoint post-intervention assessment 2–3 weeks after the intervention was completed, where psychometric assessments were repeated. This manuscript reports on data from pre/post assessments and on data collected at the post-disclosure interview. Data collected in the post-clinic interview are published elsewhere (Mkwanazi et al., 2013). Mothers were provided with an airtime voucher to contact the counsellor once disclosure was complete; all 281 mothers completed the post-disclosure interview. The primary outcome of Amagugu was parental HIV disclosure (full; partial, none) and secondary outcomes included maternal and child mental health and parenting stress, the results of which have been reported elsewhere (Rochat et al., 2014, Rochat et al., 2015). Baseline assessment included a study specific questionnaire collecting socio-demographic data. Given the sensitivity of the topic, children's age and vulnerability, and limitations on the reliability of their reporting, we did not conduct interviews with children about their mothers' HIV. Instead, maternal reports of children's reactions to, and questions about, HIV disclosure were collected at the post-disclosure interview. Data were collected during a face-to-face structured interview, conducted by the same IsiZulu-speaking counsellors who implemented the intervention, each with 3–5 years' research experience, and who had received training on data collection. Mothers contacted the interviewer once disclosure had occurred and interviews were scheduled. The interview guide examined maternal reports of the child's initial reactions to disclosure, using fixed categories (calm, confused, surprised, emotional, frightened) drawn from the literature (Murphy et al., 2006). Thereafter, mothers were asked to recall the exact questions children asked post-disclosure, which were recorded verbatim in English using pencil and paper. Given available resources, interviews were not tape-recorded. As part of quality assurance a random selection of interviews were observed by a supervising researcher (IsiZulu speaking PhD student with over 10 years' research experience) who validated the quality of interview note taking against her own interview notes. While data on children's questions relied on maternal recall, the timeframe from disclosure event to interview was relatively short, ranging from 5 to 12 days. The time in days from baseline assessment to the post-disclosure interview was similar across mothers (M 62.7 SE 3.1 CI 56, 68). Since cognitive capacity might determine a child's capacity to understand disclosure, the Ravens Coloured Progressive Matrices (Ravens-CPM) was completed at baseline. Scores were used as continuous variables in the analysis. The parent-report version of the Child Behaviour Checklist (CBCL) (Achenbach and Rescorla, 2001) was completed by mothers pre- and post-intervention. The CBCL is widely validated in many cultural settings, including South Africa (Rescorla et al., 2007), and was translated for this research with a translation licence from the developers. The CBCL scores (including missing values) were transformed and normed using the test developers®ASEBA standardised Rating-To-Score (RTS) software. RTS produces normed t-scores for a Total problems score and Internalising and Externalising problem sub-scales. The CBCL had good pre and post-test reliability (Cronbach Alpha Pre α = 0.94; Post α = 0.92) in this sample. Importantly, mental health problems were not validated using clinical interview methods, these relied only on parent-report, and should be interpreted as an indication of parental perceptions of child risk, rather than an objective measure of child mental health problems. Fig. 2 illustrates the two phases of qualitative analysis. Previously, in Phase 1 we analysed and reported on children's post-disclosure questions using content analysis (Rochat et al., 2014). The qualitative analysis was undertaken using NVivo (QSR International Pty Ltd. Version 10, 2012). A total of 197/281 children asked questions, the purpose of the Phase 1 analysis was to categorize the types of questions asked, and to quantify the number of responses under each category. Repeated readings of the data on child questions (by the second and third author) led to the coding of recurrent words and phrases as they appeared in the written post-disclosure interview forms. Codes were reviewed and discrepancies resolved together with the first and last author, and allocated to categories, based on how they informed or differed from each other. The latter analysis identified 40 children who asked a question directly about maternal death, using the words ‘death, dead or die’ (Rochat et al., 2014). Two phases of qualitative analysis in Amagugu. In Phase 2 we re-examined all children's questions using NVivo, to broaden the scope and interpretive possibilities of our previous analysis, while remaining close to the manifest content of the dataset. Data were analysed by the third author using content analysis; an inductive approach to category generation was used (Gläser and Laudel, 2013). The steps included a review of the literature on children with parents with terminal illness to draw up a list of key words; this list was broader than the original code list in Phase 1 and included “death”, “dying”, “died”, “kill/ed”, “end of life”, “survive”, “live”, and “alive”. Other culturally relevant death-related words such as “passing” or “being late”, locally representing “having died” were included. An important distinction in the Phase 2 code list was the inclusion of codes to identify instances where children asked questions about illness and death as survival questions, for example ‘will you still be alive after having HIV’. The code list was reviewed together with the first and third authors, finalised, and used as criterion by which material was included or excluded from the revised death-related question category. Following Phase 2 analysis, 61 children were identified to have asked a death question. Thereafter questions were subjected to a thematic analysis (Huberman and Miles, 2002), by the third author resulting in three themes. Themes were independently verified and confirmed by the first and second author. Z test for proportions were used to examine gender differences in themes (two tailed, significance p = 0.050). Data were analysed using STATA13. Children were grouped by whether they asked a death-related question or not. Using the “asked death-related question” variable as a binary outcome, we used logistic regression to examine the maternal and child characteristics associated with this variable. In the maternal model the independent variables were based on previous work (Rochat et al., 2014), including: maternal age, education, employment, access to regular remittance; CD4, HIV treatment status and hospitalisations; and level of disclosure level (full vs. partial). For children, the model included the child's age, gender, prior hospitalisation, whether the mother had reported that the child had a fearful reaction to disclosure, and Raven-CPM score (all known to be associated with understanding of death in the literature or in Phase 1 results) and level of disclosure (full vs. partial). We tested a combined model controlling first for significant variables only, and thereafter for all variables. We tested for differences in post-intervention CBCL outcomes by “asked death-related question” group using linear regression, controlling for pre-intervention CBCL scores and for variables significant in maternal and child models. We also tested this for children who scored above the clinical threshold of ≥65 on the CBCL.