Perceptions of sickle cell disease and genetic counseling among single young adults in Tamale, Ghana

Abstract

Sickle cell disease (SCD) is a significant public health concern in Ghana, where limited awareness of carrier status and persistent misconceptions hinder its prevention and management. In Ghana, approximately 882,490 babies are born annually, and an estimated 2% are affected by SCD. Despite advances in biomedical knowledge and the introduction of genetic counseling, sociocultural and institutional barriers continue to influence perceptions and discussions about the disease. This study employed a qualitative exploratory approach to examine perceptions of SCD and genetic counseling among 23 single young adults (SYAs) without children in Tamale, Northern Ghana. Participants were recruited through convenience and snowball sampling. In-depth interviews were conducted in English between August and September 2023. Interviews were audio-recorded, and demographic information such as age, gender, ethnicity, and educational level was collected. Thematic analysis was used to identify patterns and themes including: (1) Biomedical Understanding and Misconceptions, highlighting accurate knowledge and misinformation shaped by schools, religion, and community narratives; (2) Perceived Realities of Living with SCD, revealing social exclusion, psychological distress, and economic burden; (3) Strategies and Barriers to Reducing Incidence, emphasizing low awareness of genotype testing and weak public health education; and (4) Potential of Genetic Counseling, which, though poorly understood, was viewed as a tool for informed partner selection, emotional preparedness, and financial burden reduction. These findings highlight the need for culturally sensitive public health interventions to reduce SCD incidence in Ghana.

Keywords: Genetic counseling; Knowledge; Sickle cell; Young adults.