Using a Community-Engaged Research Approach to Prioritize Self-Management Needs of Adults with Sickle Cell Disease

Document Type

Article

Publication Date

2025

Publisher

Johns Hopkins University Press

Source Publication

Progress in Community Health Partnerships

Source ISSN

1557-0541

Abstract

Background: Sickle cell disease (SCD) is the most common blood disorder in the United States. Self-management is vital for mitigating sickle cell symptoms. However, limited research has reported self-identified priorities and needs for self-management among adults living with SCD, and few researchers have used a community-engaged research approach.


Objectives: We conducted community-engaged, qualitative research to learn about self-management needs among adults living with SCD.

Methods: Focus groups were conducted among adults with SCD and stakeholders in the SCD community (parents of adults with SCD and healthcare providers). A qualitative descriptive design and thematic analysis were employed.


Results: Four focus groups were conducted with 23 adults living with SCD and one was conducted with four community stakeholders. Of the adults with SCD (ages 20-34), 69.6% (n = 16) were ages 25-34 and 87% (n = 20) had sickle cell anemia. All (100%, n = 23) identified as Black and most (69.6%, n = 16) identified as female. All four community stakeholders identified as Black females and were ages 50-55. Thematic analysis generated three themes: (1) unsafe healthcare; (2) mental health needs and psychosocial support; and (3) successfully transitioning from pediatric care to adult care.


Conclusions: Healthcare gaps and healthcare provider bias are barriers to successful SCD self-management. Therefore, for individuals with SCD, interventions should be developed to anticipate the transition from pediatric care to adult care, improve healthcare, and support self-management strategies and skills.

Comments

Progress in Community Health Partnerships, 2025. Forthcoming. Publisher link.

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