Using community-engaged approach to develop culturally informed study materials in palliative care

INTRODUCTION: Cultural values and beliefs of individuals may affect their healthcare decision-making including their preferences and readiness for palliative care - especially among under-represented populations. Community-engaged research approaches can help investigators to better understand older adults with cancer and their family caregivers' cultural preferences regarding their palliative care needs and readiness for palliative care services. METHODS: Using a community-engaged approach, we formed and worked with a racially/ethnically diverse advisory board of older adults with cancer and their family caregivers to develop culturally informed recruitment flyers and the semi-structured interview guides for a palliative care readiness (PALCARE) tool development and validation study. RESULTS: Our advisory group comprised five members (three patients and two caregivers). They provided two major recommendations related to cultural considerations of our study materials: 1) language sensitivity (creating positive and non-threatening questions), and 2) acknowledging the heterogeneity of experiences (consider using language that recognize the heterogeneity/diversity of experiences with palliative care and serious illness). CONCLUSION: Partnering with community members helped ensure that the PALCARE tool development/validation study materials were culturally responsive for the target population.