"If you understand you cope better with it": the role of education in building palliative care capacity in four First Nations communities in Canada

Abstract

Background: In Canada, there is a growing need to develop community-based, culturally appropriate palliative care for Indigenous people living in First Nations communities. The public health approach to palliative care, which emphasizes community-based initiatives, is especially relevant in First Nations communities because care is grounded in their distinct social and cultural context. Central to the public health approach are educational strategies that strengthen communities' capacity to care for their vulnerable members as they die. This paper presents community-based research conducted with First Nations communities in Canada that aimed to assess and address local palliative care educational needs to improve community capacity in palliative care.

Methods: Participatory action research (PAR) was conducted with four First Nations communities in Canada over a six-year period (2010-2016). The research occurred in three phases. Phase 1: focus groups, interviews and surveys were employed to assess community specific needs and resources. Phase 2: recommendations were developed to guide the PAR process. Phase 3: educational resources were created to address the identified educational needs. These resources were implemented incrementally over 4 years. Ongoing process evaluation was employed, and revisions were made as required.

Results: Educational needs were identified for patients, families, community members and internal and external health care providers. A wide and comprehensive range of educational resources were created to address those needs. Those culturally appropriate educational resources are available in a very accessible and useable workbook format and are available for use by other Indigenous people and communities.

Conclusions: This research provides an example of the public health approach and offers implementation strategies around palliative care education. This paper contributes to the international literature on the public health approach to palliative care by presenting a case study from Canada that includes: conducting a culturally appropriate assessment of educational needs, creating recommendations, facilitating development and implementation of educational resources in the community to improve community capacity in palliative care.

Keywords: Aboriginal; Capacity development; Community development; Education; First Nations; Indigenous; Palliative care; Public health approach.

Fig. 1

Improving End-of-Life Care in First Nations Communities (EOLFN) Project Logic Model

Fig. 2

Geographical Location of the Four First Nations Partner Communities

Fig. 3

Process of Palliative Care Development in First Nations Communities. Kelley’s community capacity development model [57] adapted to the First Nations culture and context [1]

Fig. 4

Palliative Caregiving in First Nations Communities. Note: The Palliative Caregiving in First Nations Communities model is an adaptation of Abel and colleagues Circle of Care Model depicting the health promoting palliative care approach [20]. Based on the EOLFN research, the Abel model was adapted for relevance to the First Nations community context [1]