ArticleHealth expectations : an international journal of public participation in health care and health policy2025
Barriers to Care for Adults With Sickle Cell Disease: A Qualitative Descriptive Study.
Article in Health expectations : an international journal of public participation in health care and health policy, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
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Who cites it
7 citing papers in PubMed.
- Evaluating Reproductive Health Recommendations in CPGs for Sickle Cell Disease: An Umbrella Review.Clinical and public health guidelines · 2026Article
- Perception among adult sickle cell patients on the use of herbal medicine in the management of sickle cell disease in Ghana: a qualitative study.Journal of community genetics · 2026Article
- Humanistic and economic burden among caregivers of adults and children with sickle cell disease and recurrent vaso-occlusive crises.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Navigating pregnancy, postpartum care and reproductive autonomy with sickle cell disease in Uganda: an interpretive phenomenological study in Eastern and Central Uganda.Research square · 2026Article
- Sickle cell disease 115 years later: improving health outcomes through policy, research, and collaboration, to achieve health equity.Frontiers in health services · 2026Article
- Genotype Differences and Hydroxyurea Utilization Among Adults With Moderate to Severe Sickle Cell Disease.Pharmacotherapy · 2026Article
- The right patient, the right treatment: tailoring sickle cell disease care.Hematology. American Society of Hematology. Education Program · 2025Review
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Authors and funding
7 authors.
Funding
Abstract
objectiveWe sought to understand barriers to care among adults with sickle cell disease (SCD) within our healthcare system. STUDY SETTING AND
designThis qualitative descriptive study was conducted as part of a needs and assets assessment in preparation for the development of an adult sickle cell clinic. DATA SOURCES AND ANALYTIC SAMPLE: We conducted key informant interviews (n = 19) and a focus group (n = 10) with administrators, patients, caregivers and healthcare providers (HCPs). Audio recordings were transcribed verbatim, coded inductively and analysed thematically. PRINCIPLE
findingsFour themes emerged: (1) People with SCD identified structural barriers, such as the lack of individualised care, access barriers to medical, community, adult-specific resources and inadequate transitional care support from paediatric to adult care. (2) HCP-related barriers, which included a lack of understanding and education, communication gaps and access barriers to finding HCPs trained in caring for people with SCD. (3) Discrimination biases by HCPs and outright prejudice towards people with SCD. (4) Financial barriers such as lack of incentives for comprehensive SCD centres and HCPs and funding reimbursement. We found that adult people with SCD had unique challenges. Interestingly, patients had perspectives similar to HCPs, while administrators were more focused on the financial barriers that affect continuity of care.
conclusionsThese barriers require a concerted and multidisciplinary effort from patients, caregivers, HCPs, administrators and the community. PATIENT OR PUBLIC CONTRIBUTION: Patients, caregivers and community members played a crucial role in this study by sharing their lived experiences and perspectives on barriers to care for adults with SCD.
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