Equity in Palliative Care: Interviews with Leaders of a Sickle Cell Community-Facing Organization

Outcomes 1. Utilizing a narrative-based approach, participants will learn the motivations for creating a culturally-competent, far-reaching community-based organization for an underserved chronic disease (SCD) and apply this knowledge toward better integration of PC. 2. Utilizing DEIJB principles, participants will analyze community leader responses to a series of interview questions regarding attitudes/perceptions toward PC and lay the groundwork for an innovative social media-directed collaboration to introduce PC to to the SCD community at-large. Key Message Person's living with hemoglobinopathies have historically experienced significant medical trauma and stand to benefit from early introduction of palliative care (PC). In accordance with AAHPM's strategic priority toward DEIJB and innovative approaches to educating the public on PC, this poster demonstrates that structured conversations with leaders of successful Sickle Cell community-facing organizations may lend insights into appropriate language and approaches. Introduction AAHPM's 2020-2024 strategic plan acknowledges the need for innovative approaches to educating the general public on PC in addition to addressing Diversity, Equity and Inclusion in PC (1). Sickle Cell Disease (SCD) affects over 100,000 Americans and is the commonest genetic disease worldwide (1). Compared to less prevalent genetic disorders like cystic fibrosis, fewer interventions and research dollars are dedicated to individuals living with SCD (2). PC is a comprehensive intervention that improves the quality of life of individuals with life-limiting conditions (3). A study of individuals living with SCD found that few were familiar with PC (4). This project aims to determine the depth of PC knowledge of leaders in an education-focused sickle cell organization with a large following on social media. Methods We interviewed executive board members of an award-winning community-facing sickle cell organization using the same series of questions related to their relationship to the organization and understanding of PC. Responses were later anonymized and de-identified. Results Most of those interviewed had either a personal diagnosis of SCD or were caregivers of a loved one living with sickle cell and referenced this as their reason for founding or joining the organizational leadership. Many were unfamiliar with the AAHPM's formal definition of PC and its distinction from hospice and felt this clarification made PC even more compelling for their followers. One leader felt a home-based approach would be an ideal focus. Conclusion For a population that has experienced significant medical trauma, a graded Introduction to PC vis-a-vis an educational campaign led by trusted community organizational leadership with proven social media following may be beneficial. These organizations may have also insights that bolster medical interventions (e.g. improved access to treatments, trust, shared-decision making, goal alignment and ACP, etc). Keywords Diversity, Equity, Inclusion, Belonging, Justice; Models of Palliative Care Delivery