Developing palliative care programs in Indigenous communities using participatory action research: a Canadian application of the public health approach to palliative care

Kelley, Mary Lou; Prince, Holly; Nadin, Shevaun; Brazil, Kevin; Crow, Maxine; Hanson, Gaye; Maki, Luanne; Monture, Lori; Mushquash, Christopher; O’Brien, Valerie; Smith, J. Bruce

doi:10.21037/apm.2018.03.06

Cited by 30 publications

(65 citation statements)

References 23 publications

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“…Through this process, interpretations were shaped by discussion and debate amongst researchers and community stakeholders until consensus was reached on all points of interpretation. This iterative process reflects the Inuit relational principle of Iqqaumaqatigiinniq, whereby knowledge is produced collectively through a "coming-together" of meaning after a cyclical process of dialogue and periods of reflection amongst knowledge makers [16].…”

Section: Discussionmentioning

confidence: 99%

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Perspectives of Nunavut patients and families on their cancer and end of life care experiences

Galloway

Horlick

Cherba

et al. 2020

International Journal of Circumpolar Health

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The present study arose from a recognition among service providers that Nunavut patients and families could be better supported during their care journeys by improved understanding of people's experiences of the health-care system. Using a summative approach to content analysis informed by the Piliriqatigiinniq Model for Community Health Research, we conducted in-depth interviews with 10 patients and family members living in Nunavut communities who experienced cancer or end of life care. Results included the following themes: difficulties associated with extensive medical travel; preference for care within the community and for family involvement in care; challenges with communication; challenges with culturally appropriate care; and the value of service providers with strong ties to the community. These themes emphasise the importance of health service capacity building in Nunavut with emphasis on Inuit language and cultural knowledge. They also underscore efforts to improve the quality and consistency of communication among health service providers working in both community and southern referral settings and between service providers and the patients and families they serve.

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Section: Discussionmentioning

confidence: 99%

“…The Piliriqatigiinniq Partnership Model for Community Health Research. (Source: Healey & Tagak Sr[16]., reproduced with permission).…”

mentioning

confidence: 99%

Perspectives of Nunavut patients and families on their cancer and end of life care experiences

Galloway

Horlick

Cherba

et al. 2020

International Journal of Circumpolar Health

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“…The Improving End-of-Life Care in First Nations Communities (EOLFN) was a participatory action research project conducted in Canada to build community capacity to provide palliative care in four First Nations communities [1, 2]. This paper focuses on the project data related to palliative care education, and describes the community-led educational initiatives facilitated to address educational needs during the EOLFN research.…”

Section: Introductionmentioning

confidence: 99%

“…The research presented here was conducted as part of the “Improving End-of-Life Care in First Nations Communities (EOLFN)” project conducted in partnership with four First Nations communities in Canada [1]. The goal of that research was to improve end-of-life care through developing palliative care programs and teams in each of the partner communities to support community members who are seriously ill with a life-threatening condition.…”

Section: Introductionmentioning

confidence: 99%

“…Policy recommendations were created for health care decision makers. Research outcomes can be found in publications [1, 43–46], community reports [47–50], and a workbook for other First Nations communities entitled “Developing Palliative Care Programs in First Nations Communities” [51]. This paper by the EOLFN researchers adds new data on education to the existing dissemination.…”

Section: Introductionmentioning

confidence: 99%

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“If you understand you cope better with it”: the role of education in building palliative care capacity in four First Nations communities in Canada

et al. 2019

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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.

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Critically Appraising Social Justice Research Studies

2022

Practitioner's Guide to Using Research for Evidence‐Informed Practice

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Developing palliative care programs in Indigenous communities using participatory action research: a Canadian application of the public health approach to palliative care

Cited by 30 publications

References 23 publications

Perspectives of Nunavut patients and families on their cancer and end of life care experiences

Perspectives of Nunavut patients and families on their cancer and end of life care experiences

“If you understand you cope better with it”: the role of education in building palliative care capacity in four First Nations communities in Canada

Critically Appraising Social Justice Research Studies

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