Psychosocial burden of sickle cell disease on caregivers in a Nigerian setting

In Nigeria, with a high prevalence of sickle cell disease (SCD), families bear most of the burden of care for patients with this chronically disabling illness, because there are no national social welfare provisions. To assess the severity of indices of psychosocial burden among relatives of 24 SCD patients in crisis, in comparison with relatives of 57 SCD patients in stable condition. Cross-sectional study, using a burden instrument and Goldberg's General Health Questionnaire. Objective burden indices were significantly higher for SCD in crisis. The financial burden of SCD in crisis was significantly higher than the burden of disruption of family routines. 57.9% of all caregivers experienced little or no difficulty coping with SCD. Relatives with higher educational and occupational attainments (compared with those with lower attainments) experienced significantly lesser financial burden, disruption of family routines, and psychological distress. Compared with a similar study of cancer patients, relatives of patients in SCD crisis perceived similar financial, family routine burdens and psychological distress scores. Compared with US and UK reports, our caregivers were predominantly married and reflected the national range of socioeconomic groups. Global rating of burden was significantly predicted by disruption of family routines and higher age of caregivers. The psychosocial burden of SCD can be significantly reduced by controlling the frequency and duration of crises, as well as providing adequate information and socioeconomic support to families. Hematology staff should be sensitive to the psychosocial dimensions of SCD.