This research provides a Canadian example of implementing a public health approach to PC in an Indigenous context using PAR. It provides evidence of the effectiveness of a community capacity development as a strategy and illustrates how to implement it. This approach, fully grounded in local culture and context, has potential to be adapted to Indigenous communities elsewhere in Canada and internationally.
Providing palliative care in Indigenous communities is of growing international interest. This study describes and analyzes a unique journey mapping process undertaken in a First Nations community in rural Canada. The goal of this participatory action research was to improve quality and access to palliative care at home by better integrating First Nations’ health services and urban non-Indigenous health services. Four journey mapping workshops were conducted to create a care pathway which was implemented with 6 clients. Workshop data were analyzed for learnings and promising practices. A follow-up focus group, workshop, and health care provider surveys identified the perceived benefits as improved service integration, improved palliative care, relationship building, communication, and partnerships. It is concluded that journey mapping improves service integration and is a promising practice for other First Nations communities. The implications for creating new policy to support developing culturally appropriate palliative care programs and cross-jurisdictional integration between the federal and provincial health services are discussed. Future research is required using an Indigenous paradigm.
The Wiisokotaatiwin Program allowed community members to receive their palliative care at home, improved client experience and enhanced service integration. This article 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 palliative care programs in rural First Nations communities. The article demonstrates how local, federal and provincial healthcare 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 healthcare decisionmakers.
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: e
ducational 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.
Electronic supplementary material
The online version of this article (10.1186/s12889-019-6983-y) contains supplementary material, which is available to authorized users.
¼ 11.32, p LT .0001]. Actigraphic data revealed that participants with at least one sleep disorder had a sleep efficiency between 76-84%. An excessive daytime sleepiness on the ESS was observed only in patients with hypersomnolence [M ¼ 13.3, SD ¼ 2.7, F (3,40) ¼ 5.18, p ¼ .004]. Conclusion: The high rates of sleep disorders found in this study indicate the need to develop appropriate interventions for cancer patients receiving palliative care that target both insomnia and hypersomnolence.
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