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

Area of Science:

• Hematology
• Public Health
• Qualitative Research

Background:

• Sickle cell disease (SCD) is a prevalent blood disorder in the US.
• Effective self-management is crucial for mitigating SCD symptoms.
• Limited research exists on self-identified self-management needs and priorities among adults with SCD, particularly using community-engaged approaches.

Purpose of the Study:

• To explore the self-management needs of adults living with sickle cell disease.
• To utilize a community-engaged research methodology to gather insights.
• To identify key challenges and priorities for SCD self-management from the patient perspective.

Main Methods:

• Community-engaged qualitative research design.
• Focus groups conducted with adults with SCD and community stakeholders (parents, healthcare providers).
• Thematic analysis applied to qualitative data.

Main Results:

• Three primary themes emerged: unsafe healthcare experiences, unmet mental health needs and psychosocial support requirements, and challenges in transitioning from pediatric to adult care.
• Focus groups included 23 adults with SCD (ages 20-34, predominantly Black females with sickle cell anemia) and 4 community stakeholders.
• Identified barriers include healthcare gaps and provider biases impacting self-management.

Conclusions:

• Healthcare gaps and provider biases significantly hinder successful SCD self-management.
• Interventions are needed to support the transition from pediatric to adult care.
• Future interventions should focus on improving healthcare quality and enhancing self-management skills and strategies for individuals with SCD.