Social, economic and psychological burdens of sickle cell disease care among households of sufferers in a tertiary health facility in North Western Nigeria

Abstract

The study assessed the social, economic and psychological burden of sickle cell disease (SCD) care among households of SCD patients attending sickle cell outpatient clinic in
Ahmadu Bello University Teaching Hospital, Zaria, Nigeria. Methods: It was a cross-sectional descriptive study conducted among 205 caregivers of SCD outpatients selected through
systematic sampling. Data was collected using a structured interviewer-administered questionnaire, and analyzed using the IBM SPSS version 20.0 Results: The mean age of the SCD
patients was 12.7±9.0 years and their mean duration since diagnosis was 10.9±8.7 years. In the last 12 months, 92 (44.9%) patients had been admitted at least once due to complications of SCD, 72 (35.1%) had been transfused with blood and 150 (73.1%) had experienced painful crises. Caring for SCD patients frequently reduces the amount of care that other household members were receiving 95 (46.3%), patient's illness frequently caused disagreement or quarrel among household members 150 (73.2%), and households experienced stigmatization by community members 33 (16.1%). Ninety-six (71.2%) of the households were experiencing catastrophic expenditure from providing medical care for the SCD patient. Conclusion: Households of SCD patients were experiencing various forms of psychological, social and economic burden. It is recommended that locally applicable methods of psychological, social and economic support be included in the routine care of SCD patients and their families.