Strengthening Community-Academic Partnerships to Enhance Care for Sickle Cell Disease

Abstract

Sickle cell disease (SCD) affects approximately 100,000 Americans, predominantly those of African descent, yet care coordination between academic medical centers and community organizations remains limited. To identify strategies for strengthening community-academic partnerships to enhance care delivery for children with SCD through focus groups with community partners in a midwestern metropolitan area. Using qualitative descriptive methodology, we conducted two focus groups and three individual interviews with 12 community partners, including health care providers and advocates. Thematic analysis revealed three key findings: persistent multi-level knowledge gaps about SCD, the importance of strategic partnerships between health care organizations and community groups, and specific community-identified solutions for sustainable collaboration. Results highlighted how structured partnerships between academic institutions and community organizations can address systemic barriers in SCD care delivery through knowledge sharing, resource access, and coordinated screening protocols, informing practical strategies for implementing sustainable improvements in care coordination.

Plain Language Summary

Building Better Partnerships to Help Children with Sickle Cell Disease: What Community and Hospital Partners Say

Sickle cell disease (SCD) is an inherited blood condition that affects approximately 100,000 people in the United States, with a disproportionate impact on individuals who identify as Black or of African descent. Children with SCD often miss school, experience pain, and may face delays in their development. While specialized hospitals provide advanced treatments, they need to work closely with community health organizations to give families the best possible care. However, we do not know much about how to build and maintain these important partnerships.

As a team of health care providers, community advocates, and researchers, we worked together to design the research questions, determine how to collect information, and interpret the data. A total of 12 people participated in group discussions and individual conversations. This collaborative approach helped ensure we were asking the right questions and gathering information in ways that made sense to our community.

There were three main concepts:

1. Many people, including some health care providers, don’t know enough about SCD and its effects on child development

2. Partnerships between hospitals and community groups can help families get the care and support they need

3. Community partners identified services in schools and funding as important facilitators to sustain relationships

From this work, we learned that partners seeking to improve care for children with SCD feel that when hospitals and community organizations work together effectively, they can share knowledge, connect families to resources, and provide better care for children with SCD. Participants described that effective partnerships could help ensure families can access early intervention services and support for their children’s development. This research provides practical steps for improving how hospitals and community groups work together, ultimately aiming to help children with SCD get the comprehensive care they need to thrive.