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

Area of Science:

• Hematology
• Palliative Care
• Qualitative Research

Background:

• Sickle cell disease (SCD) is a serious inherited condition often leading to severe pain, symptoms, and early death.
• Palliative care is underutilized in SCD despite its potential to improve quality of life.
• Patient perspectives are crucial for designing effective interventions.

Purpose of the Study:

• To gather feedback from individuals with SCD to inform the design of a palliative care intervention.
• To identify patient preferences for intervention format, delivery, and content.
• To address the unmet needs in symptom management and supportive care for SCD patients.

Main Methods:

• A qualitative descriptive approach was used.
• 12 adults with SCD participated in virtual focus groups.
• Thematic analysis was conducted on transcribed data.

Main Results:

• Three themes emerged: intervention design/delivery, successful aging with SCD, and stigma surrounding "palliative care."
• Patients prefer hybrid delivery, consistent engagement, self-care, emotional well-being, and social connection.
• Strong needs identified for mental health support, education, and flexible, tailored programming.

Conclusions:

• Palliative care interventions for SCD must be culturally aligned in terminology and delivery.
• Patient-centered, nurse-led programs are recommended to improve symptom management and supportive care.
• Addressing stigma and misunderstanding of palliative care is essential for uptake.