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Abstract online early

Wiisokotaatiwin: Development and Evaluation of a Community-Based Palliative Care Program in Naotkamegwanning First Nation     [ Original Research ]

Submitted: 16 January 2017
Revised: 1 August 2017
Accepted: 6 August 2017

Author(s) : Nadin S, Crow M, Prince H, Kelley M.


Introduction: Approximately 474,000 Indigenous people live in 617 First Nations communities across Canada; 125 of those communities are located in Ontario, primarily located in rural and remote areas. Common rural health challenges, including for palliative care, involve quality and access. The need for culturally relevant palliative care programs in First Nations communities is urgent because the population is aging with a high burden of chronic and terminal disease. Because local palliative care is lacking, most First Nations people now leave their culture, family and community to receive care in distant hospitals or long-term care homes. Due to jurisdictional issues, a policy gap exists where neither federal or provincial governments takes responsibility for funding palliative care in First Nations communities. Further, no Canadian program
models existed for how different levels of government can collaborate to fund and deliver palliative care in First Nations communities. This paper describes an innovative, community-based
palliative care program (Wiisokotaatiwin) developed in rural Naotkamegwanning, and presents the results of a process evaluation of its pilot implementation. The evaluation aimed to: (i) document the programís pilot implementation; (ii) assess progress toward intended program outcomes; and (iii) assess the
perceived value of the program.
Methods: The Wiisokotaatiwin Program was developed and
implemented over five years using participatory action research (see A mixed-method evaluation approach was adopted. Descriptive data were extracted from program
documents (e.g., client registration forms). Client tracking forms documented service provision data for a 4-month sample period. Quantitative and qualitative data were collected through client and family member questionnaires (n = 7) and health care
provider questionnaires (n =22). A focus group was conducted with the program Leadership Team responsible for program development. Quantitative data were summarized using descriptive statistics. An inductive approach was used to identify themes in
the qualitative data related to the evaluation questions.
Results: The findings demonstrated the program was
implemented as intended, and that there was a need for the program, with six clients on the 10-month pilot. The findings also indicated achievement of program-level outcomes and progress toward system-level outcomes. Clients /families and health care providers were satisfied with the program and
perceived it to be meeting its objectives. The program model was also perceived to be transferrable to other First Nations communities. The results demonstrate how a rural First Nations community can build capacity and develop a palliative care program tailored to their unique culture and context that
builds upon and is integrated into existing services.
Conclusion: The Wiisokotaatiwin Program allowed community
members to receive their palliative care at home, improved client experience and enhanced service integration. This paper provides a First Nations specific model for a palliative care program that overcomes jurisdictional issues at the local level,
and a methodology for developing and evaluating community-based PC programs in rural First Nations communities. The article demonstrates how local, federal and provincial health care providers and organizations collaborated to build capacity, fund
and deliver community-based palliative care. The described process of developing the program has applicability in other First Nations (Indigenous) communities and for health care decision makers.

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