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

In Ontario, Canada, most training programs to improve home-based palliative care in First Nations communities are focused on meeting needs at end-of-life.  Few programs focus on incorporating an early palliative care approach. To fill this gap, Seow and colleagues (2024) tested the CAPACITI curriculum with 12 First Nations healthcare providers, to co-design an education program that reflected their values and culture.

A co-design team composed of individuals with experience working in palliative care initiatives with First Nations communities was created.  The co-design team reviewed the CAPACITI program and made recommendations.   The CAPACITI program education material were redesigned according to several themes emerging from the co-design team recommendations, including: incorporating culture, recognizing FN health care workers and knowledge, and taking a wholistic approach to education.

Incorporating Culture

  • Traditional cultural elements – Embed culture in the education materials to create a culturally safe space
  • Indigenous wellness framework – Capture components of the Indigenous wellness framework throughout the education materials to address wholistic care
  • Indigenous imagery and metaphors -Incorporate Indigenous art to represent connections to land, com-munity, and family

Recognizing First Nations health care workers and knowledge

  • New videos featuring First Nations health care workers – Develop video content from those working in FN communities to showcase their expertise
  • Stories related to community care – Discuss First Nations community care such as traditional healing and caring for patients at home
  • Revised case studies – Include stories and case studies depicting palliative care provided in FN communities that participants can relate to

Wholistic approach to education

  • Less clinical language – Use less clinical language to make the content more accessible for those in caregiving roles in First Nations communities
  • New program name with metaphors – Rename the education program to reflect First Nations culture and wholistic care
  • Circle reflections – Include time for large group discussions to reflect and learn from each other

The program, now named Supporting the Journey Home: Growing the Community Bundle to Care for those with Serious Illness, provides practical resources for First Nations healthcare providers to operationalize this early palliative care approach.

Source: Seow, H., Vautour, J., Bishop, V., Antone, C., Belleau, T., Corbiere, B., … & Cano, R. (2024). Supporting the Journey Home: The Process of Co-designing an Education Program to Strengthen Palliative Care Capacity in First Nations Communities. International Journal of Indigenous Health19(1).