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.
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.
Background
Indigenous Cultural‐understandings of Alzheimer’s – Research and Engagement (ICARE) is a program of research investigating the lived experiences of family and professional care providers for Indigenous people with dementia involving three diverse sites in Canada and the United States. We employ a community‐based participatory research (CBPR) approach that includes hiring Indigenous community‐based researchers to assist with community engagement, subject recruitment, data collection, analysis, and dissemination. This poster describes the development and deployment of a training program designed to build capacity and support community participation in the ICARE project.
Method
The goal was to design culturally safe training that would support community participation in the study, build research capacity in local community members, and improve standardization of protocols across the sites. The training objectives were to teach the basics of CBPR, administrative tasks, basics of qualitative research, protocols of the study, including research ethics and compliance. To accomplish this, we used a Two‐Eyed seeing approach and cultural safety lens. The training encompasses four modules, with online active and reflective learning, mandatory readings, and videotaped interviews. Five community researchers completed the training. Post‐training debriefing interviews and written review of lessons learned were conducted four months after the training was completed.
Result
At completion of the training, community researchers could define the key tenets and methodological procedures used in CBPR, including the unique ethical considerations for completing research related to dementia within Indigenous communities, the administrative duties required to produce reliable data, and demonstrate key qualitative research. Trainees reported the videotaped interviews conducted with a senior community were the most important to their learning, as the videos gave concrete examples of what to expect in conducting research within their own communities. They wished we had more content and videos on accessing and using the technology associated with the administrative tasks.
Conclusion
Hiring and training community‐based researchers is considered best practice in Indigenous Health research, yet there are few guidelines on how to develop local capacity to fill these roles. The ICARE training provided community‐based researchers with critical skills to facilitate community involvement in the research process and grounding in academic protocols and methods.
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