Sickle Cell Warriors Discuss Palliative Care: Not Our Word, We Need It

Palliative care is underutilized in sickle cell disease despite it being a serious, inherited condition plagued by severe pain, other symptoms, and frequent death in young adulthood. We sought feedback from individuals with sickle cell disease (Sickle Cell Warriors) to inform the design of a palliative care intervention. In a qualitative descriptive approach, 12 adults participated in a 90-minute virtual focus group. The session was audio-recorded, transcribed verbatim, and thematically analyzed using a structured coding process. Participants provided insights on the preferred format, delivery, and content of an intervention aimed at improving symptom management and quality of life. Three themes were identified: (1) intervention design, delivery, and check-ins, reflecting preferences for hybrid delivery, consistency, and engagement; (2) successful aging with sickle cell disease, highlighting the importance of self-care, emotional well-being, and social connection; and (3) "palliative care" is foreign, illustrating the stigma and misunderstanding surrounding the term "palliative care." Participants expressed a strong need for mental health support, education, and flexible programming tailored to their lived experiences. Future palliative care interventions need to be culturally aligned with terminology and delivery strategies. This study offers guidance for developing patient-centered, nurse-led interventions to improve symptom management and supportive care among adults with sickle cell disease.