Developing Palliative Care Programs in Indigenous Communities
Kelley ML, Prince H, Nadin S, Brazil K, Crow M, Hanson G, Maki L, Monture L, Mushquash CJ, O’Brien V, Smith J. Developing palliative care programs in Indigenous communities using participatory action research: a Canadian application of the public health approach to palliative care. Ann Palliat Med 2018;7(Suppl 2):S52-S72. doi: 10.21037/apm.2018.03.06
Background: The Indigenous people of Canada include First Nations, Inuit and Metis. This research focused on four diverse First Nations communities located in Ontario and Manitoba. First Nations communities have well-established culturally-based social processes for supporting their community members experiencing dying, loss, grief and bereavement. However, communities do not have formalized local palliative care (PC) programs and have limited access to medical services, especially pain and symptom management.
Methods: Researchers conducted participatory action research (PAR) in partnership with four First Nations communities to create local PC programs. A conceptual framework for community capacity development (Kelley model) and an integrative framework for PC research with First Nations communities guided the research over 6 years. Based on a community assessment, Elders and Knowledge Carriers, community leaders and First Nations health care providers created PC programs grounded in the unique social, spiritual and cultural practices of each community, and integrated them into local health services. Maintaining local control, community members engaged external health care organizations to address gaps in health services. Strategies such as journey mapping clarified roles and strengthened partnerships between community and external health care providers. Finally, community members advocated for needed funding, medication and equipment to provide palliative home care. The research team provided mentorship, facilitation, support, education and resources to the community leaders and documented and evaluated their capacity development process.
Results: Our findings contribute to PC practice, policy and research. Four unique PC programs were created that offered First Nations people the choice to receive PC at home, supported by family, community and culture. A workbook of culturally relevant resources was developed for use by interested First Nations communities across Canada, including resources for program development, direct care, education, and engaging external partners. Policy recommendations and a policy framework to guide PC program development in First Nations communities were created. All research outcomes were published on a website and disseminated nationally and internationally. Our work also contributes to furthering discussions of research methods that can advance public health and PC initiatives. We demonstrated the achievements of PAR methods in strengthening community action, developing the personal skills of community health care providers and creating more supportive environments for First Nations people who wish to die at home. The Kelley model was adapted for use by First Nations communities. We also identified keys to success for capacity development.
Conclusions: 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.
“If You Understand You Cope Better With It”: The Role of Education in Building Palliative Care Capacity in Four First Nations Communities in Canada
Prince H, Nadin S, Crow M, Maki L, Monture L, Smith J, Kelley ML. (2019). “If you understand you cope better with it”: The role of education in building palliative care capacity in four First Nations communities in Canada. BMC Public Health; 19:768. https://doi.org/10.1186/s12889-019-6983-y.
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.
Wiisokotaatiwin: Development and Evaluation of a Community-Based Palliative Care Program in Naotkamegwanning First Nation
Nadin S, Crow M, Prince H, Kelley ML. Wiisokotaatiwin: development and evaluation of a community-based palliative care program in Naotkamegwanning First Nation. Rural and Remote Health 2018; 18: 4317. https://doi.org/10.22605/RRH4317
Introduction: Approximately 474 000 Indigenous people live in 617 First Nations communities across Canada; 125 of those communities are located in Ontario, primarily 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 nor 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 article 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 program’s 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 5 years using participatory action research (http://www.eolfn.lakeheadu.ca). A mixed-method evaluation approach was adopted. Descriptive data were extracted from program documents (eg 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 healthcare 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 healthcare 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.
Conclusions: 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 decision makers.
Coming Home to Die: Six Nations of the Grand River Territory Develops Community-Based Palliative Care
Fruch V, Monture L, Prince H, Kelley ML. (2016). Coming home to die: Six Nations of the Grand River Territory develops community-based palliative care. International Journal of Indigenous Health, Volume 11, Issue 1: 50-74. DOI: 10.18357/ijih111201615303.
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.
An Analysis of Journey Mapping to Create a Palliative Care Pathway in a Canadian First Nations Community: Implications for Service Integration and Policy Development
Jessica Koski, Mary Lou Kelley, Shevaun Nadin, Maxine Crow, Holly Prince, Elaine C Wiersma, and Christopher J Mushquash. (2017) An Analysis of Journey Mapping to Create a Palliative Care Pathway in a Canadian First Nations Community: Implications for Service Integration and Policy Development. Palliative Care: Research and Treatment Volume 10: 1–16 – https://doi.org/10.1177/1178224217719441.
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.
Improving End-of-Life Care in First Nations Communities: Outcomes of a Participatory Action Research Project
Prince H, Mushquash C, Kelley ML. Improving end-of-life care in First Nations communities: Outcomes of a participatory action research project. Psynopsis Fall 2016:17. Available online: https://www.cpa.ca/docs/File/Psynopsis/2016/Psynopsis_Fall2016.pdf