Collaborative Innovation: Tackling Health Disparities in Youth Living with Sickle Cell Disease through Co-Design
Authors: Roach Keesha , Pace Betty S. , Clayton-Jones Dora L , Lucas Janet , Field Joshua , Bekhet Abir , Jenkins Ed , Costello Anne , Totka Joan , Ong Lee Za , Haglund Kristin , Pena Sylvia 
Published: December 2024

Background

Sickle cell disease (SCD) is a chronic, progressive red blood cell disorder affecting millions globally. Inequities in determinants of health, stigma, and poor preparation for transition from pediatric to adult-centric care contribute to health disparities among young adults living with sickle cell disease (SCD). Through co-design, young adults can engage in conversations and action to combat negative discourse and co-develop interventions that close the health equity gap in minoritized communities. When using co-design as an approach, end-users, community stakeholders, designers, and other relevant parties are involved as partners from conception to evaluation and beyond. The co-design technique includes stakeholder groups at the center of the design process to identify solutions that address their needs. Strategies are developed in alignment with the needs and priorities of the community.

Aims

The aim for this research was to describe the application of co-design principles in the concept, design, and development for The POSSE Project (Purpose, Opportunity, Support, Scientific Discovery, Empowerment). The POSSE Project is a co-design partnership bringing together key stakeholders to generate community-driven solutions to advance health equity and support young adults living and thriving with SCD. Strategies used to engage diverse stakeholders are described.

Methods

Using a Co-Design approach, young adults, parents of young adults, health care providers, and advocates participated in community advisory board meetings. The advisory board consisted of 10-12 members from January 2022 to June 2023 to discuss the content and structure of The POSSE Project. A second group of community stakeholders included a parent of a young adult living with SCD, an adult who lives with SCD, and two nurse faculty members, also met during this time to specifically discuss the concept, design, and development of the simulation scenarios. Summaries from the meetings were shared with both the advisory board and the second group of community stakeholders.

Results

In community advisory board and community stakeholder simulation meetings, participants identified challenges that are unique for young adults living with SCD including (1) their experience in an emergency department during a pain crisis, (2) their transition from high school to college, and (3) their desire to experience a social life that is uninterrupted by a pain crisis or hospitalization. The content and structure of the simulation scenarios were discussed. During the pilot intervention, one simulation episode with discussion questions was created. During the full-scale implementation, episode one was used as a foundation to design and develop a total of three episodes, each with two scenes. Young adults further emphasized the need for simulated scenarios to generate conversations among the sickle cell and health provider communities to positively impact communications and health outcomes.

Conclusion

Using Co-Design as a strategy, community stakeholders engaged in dialogues about the experiences of young adults living with SCD. Future research is needed to elicit the perspectives of young adults and community stakeholders about innovative solutions to advance health equity. Furthermore, promoting health care providers' allyship in eliminating health disparities warrants using simulation.