Attitudes and beliefs of relatives of patients with sickle cell disease

Abstract

Objectives: To assess the attitudes and beliefs of relatives of eighty one SCD sufferers on aspects of the disease, the relationship of their responses with global rating of burden, and compare with the responses of relatives of cancer patients from a similar previous study. Design: Cross-sectional survey. Setting: Haematology outpatient clinic. Measurements: Burden questionnaire and Goldberg's GHQ-12. Results: Natural/genetic aetiologies were the most commonly proffered (>70%), compared to 19.2% for cancer. Only 8.6% believed in re-incarnation theory for SCD. More than eighty three per cent believed that caring had made family ties closer. Though 43.2% felt depressed about patient's condition, 83.9% felt glad with caregiving roles, and there was no evidence of stigma from the neighbourhood. Only 4.9% had known about possibility of SCD before marriage. Over twelve per cent believed that SCD induced inferiority feelings in patient, and 33.3% that SCD caused lower intelligence. Beliefs and attitudes were not significantly correlated with global rating of burden. Conclusion: Beliefs about aetiology reflect availability of proven knowledge. The caregivers evidenced emotional disposition for community psychosocial support roles if they can be supported by social welfare and health education.