Supporting the Journey Home: The Process of Co-designing an Education Program to Strengthen Palliative Care Capacity in First Nations Communities

Abstract

In Ontario, Canada, several training programs have been created to improve home-based palliative care in First Nations communities, though they primarily focus on meeting needs at end-of-life. Therefore, education focused on incorporating an early palliative care approach for community health-related workers is necessary. To address this gap, we tested the CAPACITI curriculum with 12 health care providers working in First Nations communities across Ontario, 11 of which were members of a First Nations community, and engaged them in a collaborative process to co-design an education program that they felt was representative of First Nations values and culture. The co-designers were trained as nurses (n=8), personal support workers (n=2), a social worker (n=1), and a physician (n=1). We met with them for 12 weekly one hour sessions. They completed a workbook of questions and recommendations to tailor the education to a First Nations community context. We incorporated these recommendations into the new education by reviewing existing material, making notes of suggested changes, and adding new content. We redesigned the education according to several themes: incorporating culture, recognizing First Nations health care workers and knowledge, and approaching education wholistically. The resulting program, Supporting the Journey Home: Growing the Community Bundle to Care for those with Serious Illness, gives First Nations health care providers practical resources to operationalize an early palliative care approach with community members. To our knowledge, this is the first study to describe the co-design process of an existing palliative care education program with First Nations health care providers.