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

Abstract

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.

Integrating Indigenous healing practices within collaborative care models in primary healthcare in Canada: a rapid scoping review

“…Thirty-nine per cent of reported strategies (n=12) used functional integration at the level of the community22–33 with the remaining studies using organisational (26%; n=8),34–41 normative (19%; n=6)42–47 and professional (16%; n=5)48–52 integration (online supplemental file 2). Most strategies aimed to improve Indigenous Peoples’ access to health services,26–29 35 36 38 40 42–52 while other strategies focused on health education,22 25 30 41 fostering social support,24 33 community-based early identification of health conditions37 or a combination of these strategies 23 31 32 34 39.…”

“…Thirty-nine per cent of reported strategies (n=12) used functional integration at the level of the community22–33 with the remaining studies using organisational (26%; n=8),34–41 normative (19%; n=6)42–47 and professional (16%; n=5)48–52 integration (online supplemental file 2). Most strategies aimed to improve Indigenous Peoples’ access to health services,26–29 35 36 38 40 42–52 while other strategies focused on health education,22 25 30 41 fostering social support,24 33 community-based early identification of health conditions37 or a combination of these strategies 23 31 32 34 39. The strategies used in the included studies were for breastfeeding,22 30 cardiovascular health,31 32 41 cervical cancer,25 mental health,42 43 palliative care programmes,44–47 a drug programme,26 tuberculosis,34 cancer screening programmes,25 37 oral health,27–29 50 51 chronic obstructive pulmonary disease (COPD),23 intimate partner violence support24 33 and settings included midwifery clinics,38 40 and multidisciplinary primary health centres 35 36 39 48 49 52…”

“…Eighteen studies (58%) integrated all characteristics of the Harfield et al framework in providing culturally appropriate primary healthcare (table 1). 23 26–29 31 32 36–40 42–46 49 For example, at the normative integration level, the End-of-Life care in First Nations (EOLFN) programme was designed by a First Nations’ community advisory committee and was delivered in four First Nations communities by community leaders 44–47. This EOLFN programme met the Harfield et al characteristics of (1) accessible health services by increasing access of palliative care services in the community, (2) community participation as each community implemented their own programme according to their needs and resources, (3) continuous quality improvement by creating a journey map of the implementation process, (4) culturally appropriate and skilled workforce as care was provided by an internal community caregiving network such as extended family, elders and knowledge carriers, (5) flexible approaches to care as each community programme was grounded in their unique social, spiritual and cultural practices and was integrated into their existing health services, (6) holistic healthcare as care was provided by a local aid as well as a palliative care team including a physician, nurse, social worker and cultural knowledge keeper and (7) self-determination and empowerment as each community had the ability to implement their own programme according to their needs 44.…”

Last Aid Courses as measure for public palliative care education for adults and children—a narrative review

“…This underlines the importance of PPCE lying within the general literacy level of citizens using an easy to understand language. One example of an initiative to introduce a culturally adapted form of PPCE is seen in First Nations communities in Canada where open meetings, workshops and bedside education were employed (31). First aid education in many countries is public knowledge and a part of the school curriculum.…”

“…The public knowledge approach to palliative care seeks to implement basic knowledge about death, dying and palliative care to public knowledge by establishing LAC for the public and trying to include them in the school curricula (13,20,33,34). Some approaches to educate the public in different countries are reported in the literature (31,(35)(36)(37)(38)(39)(40)(41). These include both informal meetings like the "death chat" at St. Christopher's hospice in London (35) and an approach called "death cafe" that is offered in 76 countries round the world (36).…”