An Analysis of Journey Mapping to Create a Palliative Care Pathway in a Canadian First Nations Community: Implications for Service Integration and Policy Development

Koski, Jessica; Kelley, Mary Lou; Nadin, Shevaun; Crow, Maxine; Prince, Holly; Wiersma, Elaine; Mushquash, Christopher

doi:10.1177/1178224217719441

Cited by 16 publications

(27 citation statements)

References 33 publications

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“…The interviews were recorded and transcribed by the interviewers. Text was imported into HyperRESEARCH software (©ResearchWare Incorporated) and a summative content analysis was undertaken [17]. Text was coded according to units of meaning (words and phrases), first within data for each participant and subsequently across participant categories.…”

Section: Discussionmentioning

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 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%

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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“…Data emphasized the need for better communication and social support/care.External heath care providers who provided care in the community were invited to participate in a journey mapping event to create the palliative care pathway for home care. Evaluations indicated that through journey mapping they learned how the community provides care in the First Nation, what local health service available, and how to integrate their services in a culturally appropriate way [43]. External heath care providers were invited to participate in full day cultural awareness workshops hosted by the First Nations community.…”

Section: Resultsmentioning

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%

“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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“…Similar positive results around increasing communication and establishing partnerships were found by another study that focused on using journey mapping to engage a First Nation community in Canada to better communicate their needs to health providers. 35 Additional evidence is needed to supplement these journeys in order to turn interest into action, but the journeys provide an accessible entry point to discussion.…”

Section: Discussionmentioning

confidence: 99%

Engaging Citizens Via Journey Maps to Address Urban Health Issues

Pomeroy–Stevens¹,

Afdhal

Mishra³

et al. 2020

Environ�Health�Insights

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Effectively addressing urban health challenges requires engagement of citizens. However, citizens often face barriers providing feedback, and city officials likewise face difficulties incorporating feedback in a meaningful and systematic way. This paper shares one innovative approach to capturing citizens’ stories about urban health concerns, developed by the Building Healthy Cities (BHC) project in 2 Asian cities (Indore, India, and Makassar, Indonesia). Using ethnographic methods, BHC developed “journey maps” as a monitoring tool to follow key service issues over time. Several urban health-related issues were identified in each city. For this paper, we focus on wastewater management, which was a serious health issue in both cities. Qualitative data were collected from citizens in one neighborhood and city officials quarterly starting in early 2018; these data were supplemented by city spending data, usage statistics, photos and news articles. In both cities, the journey maps captured notable changes during the first 2 years of the project. At the start of the journeys (2018), informal settlement citizens in Indore reported poor drainage which was compounded by trash, narrow roads blocking vehicular removal of waste, and unsafe infrastructure leading to waterborne diseases and injuries (including several child deaths). Likewise in Makassar, dirty water overflowed from open drains due to frequent flooding and garbage. Citizens reported exposure to diarrhea, dengue and skin symptoms due to the drains, which was confirmed by the local health post. By the end of Year 2 (2019), these journeys captured increasing dialogue between citizens and the city, which resulted in several improvements. In Indore, changes included garbage vans built for narrow streets and construction of a safer bridge. In Makassar, while they still suffer from seasonal flooding, the city has increased garbage pickup, included drainage activities in the village-level budgeting process, and a slum improvement project has pledged funding to improve drainage and street issues in 41 neighborhoods. Journey maps work on the premise that capturing a community’s experience and relaying it to government officials can bring about positive change. They also provide crucial grassroots level evidence to support more traditional research findings, which can lead to effective urban health solutions. As this work continues, BHC is training citizens to collect and share their own journeys.

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An Analysis of Journey Mapping to Create a Palliative Care Pathway in a Canadian First Nations Community: Implications for Service Integration and Policy Development

Cited by 16 publications

References 33 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

Engaging Citizens Via Journey Maps to Address Urban Health Issues

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