Using storybooks to tell children about their HIV in Namibia: what works

Growing-up just like everyone else: key components of a successful pediatric HIV disclosure intervention in Namibia.

Brandt L, Beima-Sofie K, Hamunime N, Shepard M, Ferris L, Ingo P, John-Stewart G, O'Malley G. AIDS. 2015 Jun;29 Suppl 1:S81-9. doi: 10.1097/QAD.0000000000000667.

Objectives: To facilitate replication and adaptation of pediatric HIV disclosure interventions, we identified key components of a child-friendly cartoon book used to guide Namibian caregivers and healthcare workers (HCWs) through a gradual, structured disclosure process.

Design: Qualitative interviews were conducted with caregivers and HCWs from four high-volume pediatric HIV clinics in Namibia.

Methods: Semi-structured in-depth interviews with 35 HCWs and 64 caregivers of HIV+ children aged 7-15 were analyzed using constant comparative and modified grounded theory analysis. Major barriers to disclosure were compared to accounts of intervention success, and themes related to key components were identified.

Results: The disclosure book overcomes barriers to disclosure by reducing caregiver resistance, increasing HIV and disclosure knowledge, and providing a gradual, structured framework for disclosure. The delayed mention of HIV-specific terminology overcomes caregiver fears associated with HIV stigma, thus encouraging earlier uptake of disclosure initiation. Caregivers value the book's focus on staying healthy, keeping the body strong, and having a future 'like other kids', thus capitalizing on evidence of the positive benefits of resilience and hopefulness rather than the negative consequences of HIV. The book's concepts and images resonate with children who readily adopt the language of 'body soldiers' and 'bad guys' in describing how important it is for them to take their medicine. Discussion cues ease communication between HCWs, caregivers, and pediatric patients.

Conclusion: Given the urgent need for available pediatric HIV disclosure interventions, easily implementable tools like the Namibian disclosure book should be evaluated for utility in similar settings.

Abstract access [1] 

Editor’s notes: There is clear guidance from global and national policy that school-aged children should be fully disclosed to about their positive HIV status. However in reality disclosure to children continues to be done at a much later stage and in an incomplete way. Simple activities are necessary to support carers to disclose, equipping them with appropriate ways to tell children what they need to know about their HIV status and the nature of their condition. This paper presents the findings from a qualitative study evaluating a child-friendly storybook activity in Namibia designed to facilitate and ease the challenges carers face in timely and full disclosure to children. 

Both the caregivers and the healthcare workers reported that the book helped them overcome many of the barriers to disclosure. This finding suggests that the activity has considerable potential. The empirical literature focuses heavily on the reasons behind delayed disclosure including guilt, fear, and inadequate knowledge about how to approach and explain the topic. The particular value of this study is the contribution the authors are able to make to our understanding of what works to overcome these barriers to disclosure and why. They focus in particular on the use of metaphor within a narrative and the positive impact of a particular health behaviour (treatment adherence) in helping children to ameliorate the significance of the condition itself in their physical and social lives. What contributes to the success and applicability of the programme is that these books are designed to address common challenges faced by paediatric HIV clinics in resource-stretched settings with relative ease. For example the challenges posed by inconsistent caregivers accompanying the child to the clinic or the pressing demands on a healthcare worker’s time in a busy clinic.

The evidence presented in this paper is based on self-report from the healthcare workers and carers. The study suggests that there would be considerable value in evaluating this programme through larger studies to assess its efficacy. However, in addition to that, asking children themselves, who have been exposed to the book, about their experiences in any future research would further strengthen our understanding of the impact of the programme in this setting.  Involving the children in the research would inform how the programme can be refined and adapted for other settings. 

Adolescent support [4], Carers [5], Disclosure [6], Intervention [7], Paediatric [8]
Africa [9]
Namibia [10]
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