Disclosure of Sickle Cell Disease Diagnosis to Children and Adolescents Aged 5-18 Years at the University of Benin Teaching Hospital, Benin-City, Nigeria

Abstract

Background: Disclosure of sickle cell disease diagnosis to affected children and adolescents remains a sensitive and complex issue in the care of the disease in sub- Saharan Africa.

Objectives: To assess the level of awareness, disclosure practices, perceived benefits and barriers to disclosure of SCD diagnosis among children with SCD and their parents attending a tertiary health facility in Benin City, Nigeria.

Methods: This was a descriptive, cross-sectional study of 146 children and adolescents with SCD aged 5-18 years and their parents. The data were collected using structured interviewer-administered questionnaires and analysed using descriptive and inferential statistics.

Results: A total of 146 child- parent pairs were studied. The mean age of the participants was 10.9±3.6 years with a male-to-female ratio of 1:1. Less than half (45.2%) of the participants had been informed of their SCD diagnosis, with a mean age at disclosure of 9.4±2.8 years. Mothers were the primary sources of disclosure. The most common reason for disclosure was to improve medication adherence. Non-disclosure was mainly attributed to the perception that the child was too young and the fear of stigma. Although most parents believed disclosure was right, over half felt it was not beneficial before the age of 15 years. Most parents and children reported minimal impact of SCD on daily and school activities, although school absenteeism was common.

Conclusion: Non-disclosure of SCD diagnosis to affected children and adolescents was common in the population studied, and disclosure tends to occur at a later age.