Family Functioning and Psychosocial Burden in Caregivers of Children with Sickle Cell Disease in a Tertiary Centre in North-Central Nigeria.

Abstract

Background: Sickle cell disease (SCD) is a chronic genetic disorder that has significant psychosocial consequences for both patients and their families. This study aimed to investigate family functioning and the psychosocial burden experienced by caregivers of children with SCD.

Methods: This descriptive, cross-sectional study involved 170 caregivers of children with SCD, selected through systematic random sampling. Data were collected using both structured and semi-structured questionnaires. Family functioning was assessed using the Family APGAR (Adaptation, Partnership, Growth, Affectation, Resolve) while the psychosocial burden was evaluated using the Sickle Cell Disease Burden Instrument (SCDBI). Statistical analysis was performed using the Statistical Package for Social Sciences (SPSS) version 24.

Results: The mean age of the participants was 34.7 years, and 83% were female. The majority of caregivers reported a high level of family functioning. However, significant psychosocial burden was observed in areas such as finances, disruption of routine family activities, and the caregivers' coping abilities. The impact on family interactions was minimal.

Conclusion: Most caregivers in this study demonstrated good family functioning. Although caring for a child with sickle cell disease imposed a significant psychosocial burden, the negative impact on family interactions was minimal.