Latino American community engagement in palliative care research: co-designing the ACIPAL framework to mitigate extractivism and co-construct care

Latinos are underrepresented in US palliative care (PC) programs. When enrolled, they experience worse health outcomes than their non-Latino counterparts. More research and interventions are needed to address these healthcare weaknesses. Community-engaged research provides an avenue to foster partnership and the relevance of PC interventions. Informed by critical constructivism and the INVOLVE research-community partnership framework, the principal investigator recruited a Latino adult community advisory board (CAB) to participate in 12 one-hour monthly virtual meetings. Over the 12 meetings, the PI asked CAB members to (1) discuss community strengths and challenges in serious illness and end-of-life care, (2) plan and execute a community-based research study, (3) recommend PC research priorities for adult Latino populations, (4) provide their opinions on the research-community partnership achievement of INVOLVE values operationalized on a Likert scale (1 = low, 5 = high), and (5) critically co-construct partnership values specific to community-engaged PC research with Latinos. Meetings were recorded, transcribed, and reviewed by the PI. Means for each INVOLVE value rating and a summative mean were calculated. CAB members identified the following community strengths: cultural traditions and an existing, well-organized, grassroots community. Challenges included a lack of knowledge, mistrust of the healthcare system, and systemic barriers, including limited language services and support for family caregivers. Recommendations included specific areas such as CAB processes, caregiver training and support, PC training for interpreters, and interventions that incorporate spiritual and emotional domains. Overall, the achievement of partnership was rated acceptable at 4.3 out of 5, with each INVOLVE value meeting the project’s a priori threshold for acceptability. The CAB defined three additional partnership values for conducting PC research with Latinos: language justice, cultural justice, and community impact. This project demonstrates how sustained community engagement can inform PC research with Latino adults. In addition to identifying community strengths, challenges, and research priorities, CAB collaboration informed ACIPAL, a partnership framework that expands existing engagement values to include language justice, cultural justice, and community impact. These findings highlight the importance of research processes that move beyond participation toward shared leadership, accountability, and tangible benefit for Latino communities, historically underserved in PC.