Exploring the care relationship between grandparents/older carers and children infected with HIV in south-western Uganda: implications for care for both the children and their older carers.

Rwamahe Rutakumwa,Flavia Zalwango,Janet Seeley,Esther Richards

doi:10.3390/ijerph120202120

Abstract

The care of children orphaned by HIV/AIDS in sub-Saharan Africa is often undertaken by grandparents, yet little is known about the care relationship between grandparent and grandchild. Our aim was to examine this relationship to understand the needs and responsibilities of both the HIV positive child and older carer and the nature of the relationship, and to assess the implications for care for the children and the older carers. A qualitative study was conducted with 40 purposively sampled children (13–17 years) and their older carers (50 years and above). Participants were recruited from two clinics in south-western Uganda. Up to three semi-structured interviews were held with each participant. Data were analysed using a thematic framework approach. We found that the care relationship was mostly reciprocal: HIV positive children depended on carers for basic and health needs and carers counted on the children for performing tedious household tasks. The relationship was also characterised by challenges, sometimes causing tension between child and carer. We conclude that: (1) interventions targeting HIV positive children need to also address the needs of older carers, and (2) carers and children would benefit from psychosocial support and social protection.

Highlights

Over 35 million people are living with HIV, of whom 3.2 million are under the age of 15 years [1]
This implies a significant burden of care considering that the children under 15 years constituted the majority (93%) of HIV positive children, and were much more likely to be entirely reliant on a carer compared to their counterparts who were 15 years or over [2]
Our findings reveal that even in the context of HIV/AIDS where HIV positive children might be viewed through the lens of their status as care recipients, the care relationship between older person and child was more complex, demonstrating that carers and children were simultaneously caregivers and care recipients

Summary

Introduction

Over 35 million people are living with HIV, of whom 3.2 million are under the age of 15 years [1]. An estimated 2.1 million adolescents (10–19 years) were living with HIV in 2012 in low- and middle-income countries [1]. Statistical data on young adolescents (10–14 years) are limited and this is likely to impact on the HIV response efforts for this age group [1]. Most HIV infections in children occur during the perinatal period, and have resulted from mother-to-child transmission of HIV. This implies a significant burden of care considering that the children under 15 years constituted the majority (93%) of HIV positive children, and were much more likely to be entirely reliant on a carer compared to their counterparts who were 15 years or over [2]

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Discussion

Conclusion