Caring for Children Living with HIV/AIDS: Family Caregivers Experiences at the Princess Marie Louise Hospital, Ghana

Abstract

Introduction: Family caregivers remain the pillar of support for children living with HIV/AIDS. Appreciating their roles and experiences is a significant aspect of family-centered care and has implications for improved care outcomes. This study therefore aimed at exploring the care related experiences of Ghanaian family caregivers of children living with HIV. Methods: A descriptive qualitative study was conducted among family caregivers of children living with HIV accessing healthcare at the Princess Marie Louise Hospital, Accra. A total of 15 one-on-one interviews had been conducted by the time saturation of data was reached. Thematic content analysis was employed to unravel the data. Results: Almost all (n=14,93.3%) of the caregivers were women, less than two thirds (n=10, 66.6%) of the caregivers were below forty years and (n=7, 46.7%) being the non-biological parent(s). Emergent themes were: social experiences (financial constraints, good family support, social isolation/secrecy); spiritual experience (Inner strength derived from increased faith in God); psychological experiences (inner satisfaction in performing caregiver roles; and anxiety over their children’s future); physical experiences (care being demanding); altered quality of life (mainly adverse changes); and health care related experiences (supportive staff a key motivator fostering caregiver role). Conclusion: The study found both positive and negative family caregiver experiences with regards to the care of their HIV infected children. Healthcare providers must capitalize on the positive experiences to provide strength-based care, which involves incorporating the clients’ own strengths and capabilities as well as wider support network in the planning and delivering of services for children and adolescents living with HIV. Available social support from government and nongovernmental organizations should also be sustained.