Caregiver's HIV disclosure to children 12 years and under: A review and analysis of the evidence

Krauss, Beatrice J.; Letteney, Susan; Baets, Anniek J. De; Baggaley, Rachel; Okero, F. Amolo

doi:10.1080/09540121.2012.712664

Cited by 28 publications

(40 citation statements)

References 41 publications

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“…In this research, we show that when disclosure includes communication about death, this did not have any significant immediate negative consequences, in the short-term, as measured by maternal report, a few weeks post-disclosure at the follow up assessment. This concurs with existing evidence that children's emotional distress following disclosure is generally reported to be short-lived (Krauss et al., 2013). Longer term follow up is required to interrogate this issue thoroughly.…”

Section: Discussionsupporting

confidence: 91%

“…This data set includes information on mothers' experiences of disclosing, and maternal reports of parent-child communication about HIV post-disclosure. Apart from data published from Amagugu, little is understood about this age group of HIV-exposed children and their understanding about parental HIV in high prevalence regions (Krauss et al., 2013). …”

Section: Introductionmentioning

confidence: 99%

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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

Mitchell

Lubbe

et al. 2017

Social Science & Medicine

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IntroductionChildren'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.MethodsHIV-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.ResultsChildren'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).DiscussionThe 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.ConclusionIn sub-Saharan Africa, given exposure to death at young ages, meeting children's informational needs could increase their resilience.

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Section: Discussionsupporting

confidence: 91%

Section: Introductionmentioning

confidence: 99%

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

Rochat

Mitchell

Lubbe

et al. 2017

Social Science & Medicine

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“…They may struggle about the timing, approach, and content of the disclosure, and many of them are not confident in talking about HIV with children or explaining the cause of their infections (Corona et al, 2006; Kyaddondo et al, 2013). However, empirical data on these issues are limited to date (Krauss et al, 2013; Qiao et al, 2013). Therefore, it becomes increasingly important to understand the current practices and effects of such practices in order to identify or develop appropriate and effective approaches of parental HIV disclosure.…”

Section: Introductionmentioning

confidence: 99%

Parental HIV disclosure: from perspectives of children affected by HIV in Henan, China

Zhao

Qiao

et al. 2014

AIDS Care

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Culturally and developmentally appropriate parental HIV disclosure (i.e., parents disclose their HIV infection to children) has been shown to be closely related with the well-being of both HIV-infected parents and their children. However, current practices and effects of parental HIV disclosure remain poorly understood in low and middle-income countries including China. Quantitative data from 626 children affected by parental HIV (orphans and vulnerable children) in Henan, China, were collected in 2011 to examine children’s perceptions and knowledge regarding their parents’ HIV disclosure practices and to assess the associations of these practices with children’s demographic and psychosocial factors. The data in the current study revealed that only a small proportion of children learned parental HIV infection from their parents (direct disclosure) and many of these disclosure seemed being unplanned. Among the children who were not told by their parents, at least 95% of them either knew parental illness from others (indirect disclosure) or from their own observations or suspicions. The children reported similar disclosure practices by fathers and mothers. There were minimum differences between disclosed and non-disclosed children on a number of psychosocial measures. The findings support the notion that parental HIV disclosure is a complex process and can only be beneficial if it is carefully planned. The data in the current study suggest the needs for the culturally and developmentally appropriate approach in parental HIV disclosure in order to maximize both short and long term benefits to children, parents, and family functioning.

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“…This is particularly important in the context of parental HIV, as one of the negative impacts on children and families relates to repeated illnesses that may lead to hospitalizations and separation of the HIV-infected parent from the child and their family (7, 67). Presently, little is understood about children’s developmental capacity to understand HIV and its health consequences (68). The limited available evidence originates predominantly from high income contexts (28) and suggests that primary school-aged children have few preconceived ideas about the meaning of HIV infection (15), and its potential to cause parental death (69).…”

Section: Resultsmentioning

confidence: 99%

The Amagugu Intervention: A Conceptual Framework for Increasing HIV Disclosure and Parent-Led Communication about Health among HIV-Infected Parents with HIV-Uninfected Primary School-Aged Children

Rochat

Mitchell

Stein

et al. 2016

Front. Public Health

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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.

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Caregiver's HIV disclosure to children 12 years and under: A review and analysis of the evidence

Cited by 28 publications

References 41 publications

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

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

Parental HIV disclosure: from perspectives of children affected by HIV in Henan, China

The Amagugu Intervention: A Conceptual Framework for Increasing HIV Disclosure and Parent-Led Communication about Health among HIV-Infected Parents with HIV-Uninfected Primary School-Aged Children

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