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

ABSTRACT: 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 (? -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.

SUBMITTER: Rochat TJ

PROVIDER: S-EPMC5224234 | biostudies-literature | 2017 Jan

REPOSITORIES: biostudies-literature

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

Rochat Tamsen J TJ Mitchell Joanie J Lubbe Anina M AM Stein Alan A Tomlinson Mark M Bland Ruth M RM

Social science & medicine (1982) 20161121

<h4>Introduction</h4>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.<h4>Methods</h4>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 que ...[more]

PMID: 27881248

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Project description:Advances in access to HIV prevention and treatment have reduced vertical transmission of HIV, with most children born to HIV-infected parents being HIV-uninfected themselves. A major challenge that HIV-infected parents face is disclosure of their HIV status to their predominantly HIV-uninfected children. Their children enter middle childhood and early adolescence facing many challenges associated with parental illness and hospitalization, often exacerbated by stigma and a lack of access to health education and support. Increasingly, evidence suggests that primary school-aged children have the developmental capacity to grasp concepts of health and illness, including HIV, and that in the absence of parent-led communication and education about these issues, HIV-exposed children may be at increased risk of psychological and social problems. The Amagugu intervention is a six-session home-based intervention, delivered by lay counselors, which aims to increase parenting capacity to disclose their HIV status and offer health education to their primary school-aged children. The intervention includes information and activities on disclosure, health care engagement, and custody planning. An uncontrolled pre-post-evaluation study with 281 families showed that the intervention was feasible, acceptable, and effective in increasing maternal disclosure. The aim of this paper is to describe the conceptual model of the Amagugu intervention, as developed post-evaluation, showing the proposed pathways of risk that Amagugu aims to disrupt through its intervention targets, mechanisms, and activities; and to present a summary of results from the large-scale evaluation study of Amagugu to demonstrate the acceptability and feasibility of the intervention model. This relatively low-intensity home-based intervention led to: increased HIV disclosure to children, improvements in mental health for mother and child, and improved health care engagement and custody planning for the child. The intervention model demonstrates the potential for disclosure interventions to include pre-adolescent HIV education and prevention for primary school-aged children.

Project description:There has been limited involvement of HIV-negative children in HIV disclosure studies; most studies conducted on the effects of disclosure on children have been with HIV-positive children and HIV-positive mother-child dyads. Seven HIV-positive and five HIV-negative children participated in a larger study conducted to understand the lived experiences of HIV-positive parents and their children during the disclosure process in Kenya. In this study, the experiences of these 12 children after receiving disclosure of their own and their parents' illnesses respectively are presented. Each child underwent an in-depth qualitative semi-structured digitally recorded interview. The recorded interviews were transcribed and loaded into NVivo8 for phenomenological data analysis. Five themes emerged from the data, indicating that HIV-positive and negative children appear to have differing post-disclosure experiences revolving around acceptance of illness, stigma and discrimination, medication consumption, sexual awareness, and use of coping mechanisms. Following disclosure, HIV-negative children accepted their parents' illnesses within a few hours to a few weeks; HIV-positive children took weeks to months to accept their own illnesses. HIV-negative children knew of high levels of stigma and discrimination within the community; HIV-positive children reported experiencing indirect incidences of stigma and discrimination. HIV-negative children wanted their parents to take their medications, stay healthy, and pay their school fees so they could have a better life in the future; HIV-positive children viewed medication consumption as an ordeal necessary to keep them healthy. HIV-negative children wanted their parents to speak to them about sexual-related matters; HIV-positive children had lingering questions about relationships, use of condoms, marriage, and childbearing options. All but one preadolescent HIV-positive child had self-identified a person to speak with for social support. When feeling overwhelmed by their circumstances, the children self-withdrew and performed positive activities (e.g., praying, watching TV, listening to the radio, singing, dancing) to help themselves feel better. Many HIV-affected families have a combination of HIV-positive and negative siblings within the household. Pending further studies conducted with larger sample sizes, the results of this study should assist healthcare professionals to better facilitate disclosure between HIV-positive parents and their children of mixed HIV statuses.

Project description: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.

Dataset Information

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

Publications

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

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