“I don't feel shy because I will be among others who are just like me…”: The role of support groups for children perinatally infected with HIV in Zimbabwe

Zivai Mupambireyi,Sarah Bernays,Mutsa Bwakura-Dangarembizi,Frances M Cowan

doi:10.1016/j.childyouth.2014.03.026

Abstract

As access to paediatric antiretroviral therapy (ART) continues to improve in sub-Saharan Africa, a new historically specific cohort of HIV-perinatally infected children surviving into adolescent has emerged. Although remarkable successes have been made clinically in keeping this cohort alive and in reasonable health, their social support experiences are still unknown. The research being reported here sought to explore peer social support experiences of HIV-perinatally infected children in Harare, Zimbabwe. In this article, we draw on 56 repeat in-depth interviews (IDIs) conducted in three phases and two focus group discussions (FGDs) with HIV-infected children (11–13years). Additional interviews were held with 10 carers. Study findings suggested that both children and carers perceive support groups as a safe social space for learning and acquiring HIV information as well as gaining confidence. Additionally, findings highlighted the importance of consistency of participation. Structural and personal barriers to access and participation in support group were also identified. We conclude that support groups are a useful resource for HIV-infected children and therefore should be supported by stable funding.

Highlights

Carers and children shared the same views on the role of support groups in providing a unique social space for HIV-infected children to play and talk about HIV
Though the majority of the children could not explicitly say what they had learnt from attending support groups, they all emphasised the benefits of learning valuable information through attendance, about HIV and drugs
Intermittent or inconsistent funding of children's support groups has seen a number of support groups being terminated in Zimbabwe, leaving children with no social space to interact with other HIV positive children, let alone learn from other children's experiences

Summary

Introduction

Despite remarkable clinical successes in keeping children living with HIV alive and in reasonable health, HIV-infected children have been described as being at risk of depression, isolation and stigma (Lam, Naar-King, & Wright, 2007; Mavhu et al, 2013) For many children, this continues to be a significant characteristic of living with HIV despite access to anti-retroviral therapy (ART). In some African countries, knowing one's HIV status and willingness to disclose to other members is a prerequisite for participation in support groups (Gillard & Roark, 2012; Mavhu et al, 2013) This presents problems if disclosure is perceived as difficult and delayed, as is often the case with children. Isolation and discrimination has shrouded HIV in secrecy, making it very difficult for children to seek and receive psychosocial support (Menon et al, 2007)

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Conclusion