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.
This paper describes the development and implementation of a community-based palliative care program in Six Nations of the Grand River Territory, Ontario, Canada. Six Nations' innovative program is grounded in a vision to provide access to quality palliative care at home and incorporate Haudenosaunee traditional teachings. A community-based Project Advisory Committee led the development process, and a Leadership Team of local and regional palliative care partners led implementation. Using participatory action research, academic researchers supported activities and facilitated data collection and evaluation. Outcomes included: creation of a Palliative Shared Care Outreach Team, including a First Nations physician, nurse, and social worker; development of a detailed care pathway for clients who need palliative care; increased home deaths (55) as compared to hospital (22) or hospice (6) deaths; access to palliative care education and mentorship for local healthcare providers; incorporation of traditional teachings to support clients and staff dealing with death, dying, grief, and loss; and creation of a palliative care program booklet for Six Nations Health Services. This unique initiative reduces disparities in access to quality palliative home care and demonstrates that First Nations communities can successfully undertake a process of community capacity development to create unique and culturally responsive palliative care programs. Challenges included overcoming federal and provincial jurisdictional issues in provision of health services through collaborative partnerships at the local and regional level.
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.
First Nations communities have the desire and capacity to care for community members to the end of their lives. Community development and advocacy are required to support First Nations in addressing existing barriers and gaps in education, policy and service delivery.
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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