Training Latino Community Leaders about Palliative Care

Awareness of palliative care and advance care planning remains limited in many Latino communities, often due to language barriers, limited exposure to palliative care services, and a lack of culturally responsive educational resources. These challenges may be particularly pronounced where health care systems have fewer established relationships with Latino residents and community organizations, or limited bilingual palliative care staff.

To address these gaps and increase access, a nurse-led educational intervention using a Participatory Action Research (PAR) approach was developed in North Carolina. Rather than positioning healthcare professionals as the sole source of information, the project focused on training trusted Latino community leaders to serve as Palliative Care Lay Advisors (PCLAs). The intervention sought to increase community-level knowledge of palliative care and advance care planning while building sustainable local capacity for education and outreach.

The project was led by a multidisciplinary team that included palliative care nurse specialists and a medical anthropologist. Latino community leaders participated in the design and implementation process, helping ensure that educational materials, messaging, and outreach strategies reflected community priorities and cultural values.

PCLAs were required to be at least 18 years of age, able to read and write in both Spanish and English, willing to assist Latino individuals with cancer and their families, and able to travel within their communities. The intervention included 15 Latino community leaders, 14 of whom were women and 11 of whom identified as being of Mexican heritage.

Participants completed a 10-hour bilingual training program focused on palliative care, advance care planning, communication strategies, and home-based symptom management. Training materials were drawn from the American Cancer Society and The Conversation Project (https://theconversationproject.org/), and were provided in both Spanish and English.  Six months later, PCLAs received a booster training session designed to reinforce knowledge and support continued community engagement.

The Palliative Care Knowledge Scale (PaCKS) was used to evaluate participants’ changes in palliative care knowledge and the Advance Care Planning and Engagement Survey (ACPES) was used to assess advance care planning readiness.

Findings included:

• Significant increases in palliative care knowledge immediately following training and at 10-month follow-up
• Sustained improvements in knowledge over time, suggesting retention of educational content
• Significant increases in advance care planning readiness between baseline and follow-up
• Evidence that community leaders were prepared to share information about palliative care and advance care planning within their communities

These findings suggest that a relatively brief, culturally tailored training programs can increase palliative care knowledge while strengthening community readiness to engage in advance care planning discussions.

One of the most important lessons from this project is that palliative care education does not need to occur exclusively within health care settings. Community members often turn to trusted leaders, faith communities, advocacy organizations, and informal social networks when making healthcare decisions. By equipping respected Latino community leaders with foundational palliative care knowledge, the intervention expanded opportunities for culturally relevant conversations beyond clinical encounters.

The participatory action research approach was central to the program’s development. Rather than creating an intervention for the community, researchers worked alongside community members from the earliest planning stages. Before pursuing funding, the team spent months meeting with Latino community organizations, advocacy groups, churches, and local leaders to understand community priorities and determine whether the proposed intervention addressed a meaningful need. Community members remained involved throughout the planning, implementation, and refinement process.

Trust emerged as a foundational implementation strategy. The research team intentionally partnered with organizations and leaders who already had established relationships within Latino communities. These relationships helped inform intervention design, support recruitment of PCLAs, and ensure that educational content reflected community realities. Reflecting on the experience, palliative care researcher Lee Ann Johnso, PhD, RN, emphasized that strong community partnership should be woven into every stage of the work:

Another important implementation insight involved accessibility and inclusion. The team intentionally designed the program to be welcoming to all community members. During implementation, researchers modified institutional procedures to minimize barriers to participation and worked closely with community partners to ensure participants felt safe engaging with the program. This focus on accessibility reflected the project’s broader goal of creating resources that were culturally responsive, practical, and available to individuals who might otherwise face barriers to healthcare information.

The intervention also highlighted the potential role of community leaders in strengthening palliative care infrastructure. In many rural and emerging Latino communities, formal palliative care resources are limited or nonexistent. Researchers described communities where older Latino adults seeking assistance frequently encountered systems that were not designed to meet their linguistic or cultural needs. Training trusted community leaders created an additional layer of support that could extend palliative care education into homes and neighborhoods where specialty services were often harder to reach.

Although the intervention demonstrated sustained improvements in palliative care knowledge and advance care planning readiness, implementation was significantly affected by the COVID-19 pandemic. Activities originally designed around in-person training, home visits, and relationship-building were adapted to virtual formats, limiting opportunities for direct community engagement. Despite these challenges, participants maintained meaningful gains in knowledge and preparedness, highlighting the resilience and adaptability of the training module

The intervention required relatively modest resources to implement, suggesting it may be feasible in similar settings

Core components included:

• Palliative care nurse specialists
• Community-based Latino leaders
• Bilingual educational materials adapted from ACS and Conversation Project resources
• Training space and educational resources (or online meeting platforms)
• Ongoing mentorship and booster training
• Community engagement and recruitment support

Several elements of this intervention may be scalable across diverse settings:

• Community health worker and lay advisor models
• Bilingual palliative care education programs
• Participatory action research approaches
• Community-based advance care planning outreach
• Partnerships with faith-based and community organizations
• Train-the-trainer educational frameworks

The intervention may be particularly useful in regions with growing Latino populations where access to culturally responsive palliative care services remains limited.

Since the model relies primarily on education, relationship-building, and community engagement rather than specialized clinical infrastructure, implementation costs may be lower than many traditional healthcare-based interventions.

The project was supported by the Rita and Alex Hillman Foundation through its Serious Illness and End-of-Life Emergent Innovation Program, with additional support from the iTHRIV Scholars Program and the National Institutes of Health. Although the project required grant extensions because of the COVID-19 pandemic, sustainability was built into the model by investing in community leadership. As Lee Ann Johnson, the program leader explained, once community leaders were trained, they could continue educating others and potentially mentor future lay advisors helping extend the project’s impact beyond the original grant funding. This approach helps shift knowledge from healthcare institutions into community networks, potentially creating longer-lasting impact.

The booster training session also supported sustainability by reinforcing learning and maintaining participant engagement over time, versus a “one and done” approach.

Long-term sustainability may depend on:

• Continued partnerships between healthcare organizations and community leaders
• Access to updated educational materials
• Ongoing mentorship and support
• Funding for training and community engagement activities
• Opportunities for continued leadership development

• Establish community partnerships before applying for funding for new initiatives
• Ensure trusted community members have meaningful decision-making roles throughout planning and implementation
• Work with organizations and leaders who already have established relationships within the community of interest
• Design programs to be accessible to all community members, regardless of immigration status or other potential barriers
• Deliver education in participants’ preferred language and use culturally relevant examples
• Include hands-on practice opportunities such as role-playing and stimulated home visits
• Provide booster sessions to reinforce learning and support long-term knowledge retention
• Make training logistics convenient and responsive to participant preference
• Build interventions around existing community strengths rather than creating entirely new outreach structures
• Recognize that trust-building requires substantial time and investment before implementation begins

Lee Ann Johnson, PhD, RN

Carlos Melendez, PhD

Kim Larson, PhD, MPH, RN, FNAP

Palliative care nurse specialists and community-based Latino leaders in North Carolina