Psychosocial burden of sickle cell disease on the family, Nigeria

Abstract

Background: Sickle Cell Disease (SCD), the most common genetic disorder amongst Black people, poses a significant psychosocial burden on the sufferers, the caregivers and their families.

Objective and methods: From 01 January 2011 to 30 September 2011 the caregivers of children with SCD treated at the Paediatric Haematology Clinic of the University Teaching Hospital in Ado-Ekiti, Nigeria, were included in a study, using a structured questionnaire and a validated, culture-relevant disease burden interview to assess the psychosocial burden of SCD on these caregivers. Three main objective psychosocial domains and some subjective domains, including the caregivers’ coping ability were assessed.

Results: A total of 225 caregivers, consisting of 202 mothers (89.8%), 15 grandmothers (6.7%) and 8 fathers (3.6%) were studied. In 53.3% of the families, the care of children with SCD adversely affected the provision of their basic needs, with 73.3% of the caregivers stating that time spent caring for the child made them lose income or financial benefits; 19.6% of the caregivers had to take out loans to meet the expenditure of the patient’s illness. Caring for children with SCD reportedly made 42.2% of the caregivers neglect other family members. In addition, 14.2% of the families experienced moderate to severe disruption in their day-to-day interactions within the family to the extent that 12.4% frequently quarrelled due to the child’s illness.

Conclusion: Caregivers are faced with enormous financial, interpersonal and psychological problems. Social support should be available to alleviate caregivers’ and/or family members’ burdens.