RPD215 - Using community engaged approach to develop and validate a culturally tailored palliative care readiness tool

Key Message : Using principles of community engaged approach can help develop a culturally tailored palliative care readiness tool for older adults with cancer and their family caregivers especially to those belonging to under-represented backgrounds.

Abstract: Background/rationale: The cultural values and beliefs of individuals may affect their healthcare decision-making including their preferences and receptiveness for palliative care (PC) especially among underrepresented populations. 1,2 Using community engaged research (CEnR) 3,4 may help
better understand their cultural preferences and provide culturally concordant PC.

Objectives/

Purpose: Use a mixed methods approach and principles of community engaged research (CEnR) to develop and validate a culturally tailored PALCARE tool for older adults with cancer and their family caregivers.

Methods/Approach: Using CEnR principles, we formed a patient and family advisory board that consisted of patient and family members representative of diverse race/ethnicity (White, Black, and Hispanic). After forming the board, we conducted a series of meetings with
the advisory board members to seek feedback on the study flyers and the semi-structured interview guides.

Results: Our advisory group comprised 5 members: patients (n=3) and caregivers (n=2); identifying as White (n=3), Black (n=1), and Hispanic/Latino (n=1). The feedback provided on the study materials centered around: 1) Language Sensitivity: to create more positive questions; and use the term supportive care, “instead of” or “in conjunction with” PC. 2) Cultural Humility: to acknowledge the heterogeneity of experiences (refrain from using language that assumes all older adults with cancer and their family caregivers experience similar physical and psychological symptoms).

Conclusion/Implications: Partnering with the community members is essential to ensure the study materials are culturally sensitive and appropriate for the target population. Understanding their perspectives/experiences will help with cultural tailoring of our PALCARE tool and allow
clinicians to provide targeted PC that is congruent with their and readiness for PC.

References: 1. Bakitas MA, Gazaway S, Underwood F, Ekelem C, Heard VT, Kennedy R, Azuero A, Tucker R, McCammon S, Hauser JM, McElwain L. Palliative video consultation and symptom distress among rural inpatients: A randomized clinical trial. JAMA network open. 2025;8(7):e2519426.
2. Cain CL, Surbone A, Elk R, Kagawa-Singer M. Culture and palliative care: Preferences, communication, meaning, and mutual decision making. Journal of Pain and Symptom Management. 2018;55(5):1408-19.
3. Key KD, Furr-Holden D, Lewis EY, Cunningham R, Zimmerman MA, Johnson-Lawrence V, Selig S. The continuum of community engagement in research: A roadmap for understanding and assessing progress. Progress in Community Health Partnerships: Research, Education, and Action. 2019;13(4):427-34.
4. Gazaway S, Bakitas MA, Elk R, Eneanya ND, Dionne-Odom JN. Engaging African American family caregivers in developing a culturally-responsive interview guide: A multiphase process and approach. Journal of Pain and Symptom Management. 2022;63(6):e705-11.