Psychosocial Burden and Coping Abilities of Caregivers of Children with Sickle Cell Disease Attending Government-Owned Tertiary Health Care Facilities in Ogun State, Southwest Nigeria

Abstract

Objective: Sickle cell disease is a chronic inherited haematological disorder affecting predominantly people of African, Arab and Indiana ancestries with the highest reported burden of 150,000 children in Nigeria. The chronicity and physical and psychosocial complications of the disease pose a significant psychosocial burden on children and their caregivers. This study assessed the psychosocial burden and coping abilities of primary caregivers of children with sickle cell disease. Method: It was a descriptive cross-sectional study done in two public tertiary health institutions in Ogun State. Semi-structured interview-based validated questionnaires were administered to assess their psychosocial and health burden. The coping ability of the caregivers was determined. Descriptive statistics and non-parametric tests were used for data analysis. Results: Two hundred and twenty-four primary caregivers were interviewed. The moderate to severe psychosocial burden was 34.4%. Some (21.4%) found it difficult to cope with the care of the children and 12.1% believed it had a severe impact on their health. Major factors reported were frequent hospitalization, emergencies, school absenteeism, crisis and hospital bills. Caring for these children caused a general atmosphere of tension and marital disharmony in 17.4% and 17.9% of the respondents, respectively. The stress level was higher among female caregivers, low socio-economic class, single parenthood and older caregivers. Female child, age and severity of illness had a significant impact on the burden and coping levels. Conclusion: The caregivers experienced some psychosocial burden and difficulty in coping. Frequent hospitalization and the high cost of health care placed significant strain on them.