Hope for the Future But Fear the Risk of Stigma: Ethiopian Family Caregivers’ Lived Experience of Caring for Their HIV Positive Child Two Years After Starting Antiretroviral Treatment

ABSTRACT

Family caregivers are believed to be the primary source of support for HIV-affected children. There is limited evidence about practices of support for caregivers, to strengthen them and to enhance the welfare of HIV positive children, especially in African settings. Our aim was therefore to illuminate caregivers’ lived experiences of caring for a child in Ethiopia 2 years after the child was enrolled in antiretroviral therapy. Qualitative interviews with 18 family caregivers of 18 children were performed and analyzed using an inductive design with a hermeneutic phenomenological approach. The family caregivers’ lived experience was shown in two main themes comprising “lifelong medication gives hope for the future” and “support challenged by the fear of stigma.” The family caregivers experienced hope and dreams for the future as they saw their child as healthy and they had regained normality in life after the child’s diagnosis. The caregivers still feared the disclosure of the child’s diagnosis, which gave rise to conflicts with the child, the family, and society. Good quality support from the healthcare staff lightened their burdens. Further studies are recommended on the strategies of stigma reduction and developing need-specific modalities to support caregivers in the community.

KEYWORDS:

• Antiretroviral treatment
• caregivers
• child
• hope
• risk of stigma

Funding

This study was supported by the Swedish Research Council ((521-2013-2633), The Swedish Research Council for health, working life and welfare (2013-2094), and SIDA (348-2011-7394)).

Additional information

Funding

This study was supported by the Swedish Research Council ((521-2013-2633), The Swedish Research Council for health, working life and welfare (2013-2094), and SIDA (348-2011-7394)).