Sickle cell disease and the need for blood: Barriers to donation for African, Caribbean, and Black young adults in Canada

Abstract

Background: Many blood operators around the world face the challenge of increasing the number of donors of African ancestry to meet the transfusion needs of people living with sickle cell disease. This article reports results of the barriers to blood donation for young adults (aged 19-35) in Canada who identify as African, Caribbean, or Black.

Study design and methods: A community-based qualitative study was conducted by researchers from community organizations, blood operator, and universities. In-depth focus groups and interviews (n = 23) were conducted from Dec 2021 to Apr 2022 and thematic analysis was completed.

Results: Applying a socio-ecological model, multiple levels of interacting barriers to blood donation were identified. These included macro-level barriers (e.g., systemic racism, mistrust of the healthcare system, sociocultural beliefs and views about blood and sickle cell disease), mezzo-level barriers (e.g., deferral criteria, minimum hemoglobin levels, donor questionnaire, access, parental concerns), and microlevel barriers (e.g., limited knowledge of blood needs for people with sickle cell disease, lacking information about blood donation process, fear of needles, personal health concerns).

Discussion: This study is the first to focus on barriers to donation for African, Caribbean, and Black young adults across Canada. Parental concerns, informed by parents' experiences of inequitable healthcare and mistrust, emerged as a novel finding in our study population. Results suggest that higher order (macro-level) barriers influence and may reinforce lower order (mezzo- and microlevel) barriers. As such, interventions aimed at addressing barriers to donation should keep in view all levels with particular attention paid to higher order barriers.

Keywords: donors; health research methodology.