Three Perspectives on the Experience of Support for Family Caregivers in First Nations Communities.

There is a dearth of research on how family caregivers are supported in First Nations. We interviewed family caregivers, health and community providers, and leaders in two Alberta First Nations Communities about their experiences of care and support for the family caregivers in their communities. We employed a qualitative, collaborative participatory action research methodology. We drew on Etuaptmumk, the Mi'kmaw understanding of being in the world is the gift of multiple perspectives. Participants in this research included family caregivers (n = 6), health and community providers (n = 14), and healthcare and community leaders (n = 6). The overarching caregiving theme is the "Hierarchy of challenge". Six themes capture the challenges faced by family caregivers: (one) "Caregiving is a demanding job": yet "No one in a sense is taking care of them"; (two) difficult navigation: "I am unable to access that"; (three) delayed assessments and treatment "And I don't know how they're being missed"; (four) disconnected health records: "It's kind of on you to follow up"; (five) racism, "It's treated differently"; and, (six) social determinants of health, "A lot of these factors have been developing for the longest time". This study provides evidence that family caregivers' need to care for and to maintain their own wellbeing is not top of mind in policy or programs in these First Nations communities. As we advocate for support for Canadian family caregivers, we need to ensure that Indigenous family caregivers are also recognized in policy and programs.

Supporting First Nations Family Caregivers and Providers: Family Caregivers', Health and Community Providers', and Leaders' Recommendations.

Family caregivers and care providers are increasingly becoming more distressed and reaching a breaking point within current systems of care. First Nations family caregivers and the health and community providers employed in First Nations communities have to cope with colonial, discriminatory practices that have caused intergenerational trauma and a myriad of siloed, disconnected, and difficult-to-navigate federal-, provincial/territorial-, and community-level policies and programs. Indigenous participants in Alberta's Health Advisory Councils described Indigenous family caregivers as having more difficulty accessing support than other Alberta caregivers. In this article, we report on family caregivers', providers', and leaders' recommendations to support First Nations family caregivers and the health and community providers employed in First Nations. We used participatory action research methods in which we drew on Etuaptmumk (the understanding that being in the world is the gift of multiple perspectives) and that Indigenous and non-Indigenous views are complementary. Participants were from two First Nation communities in Alberta and included family caregivers (n = 6), health and community providers (n = 14), and healthcare and community leaders (n = 6). Participants advised that family caregivers needed four types of support: (1) recognize the family caregivers' role and work; (2) enhance navigation and timely access to services, (3) improve home care support and respite, and (4) provide culturally safe care. Participants had four recommendations to support providers: (1) support community providers' health and wellbeing; (2) recruit and retain health and community providers; (3) improve orientation for new providers; and (4) offer providers a comprehensive grounding in cultural awareness. While creating a program or department for family caregivers may be tempting to address caregivers' immediate needs, improving the health of First Nations family caregivers requires a population-based public health approach that focuses on meaningful holistic system change to support family caregivers.

Decision-making capacity assessment education.

BACKGROUND/OBJECTIVES: As the elderly population and associated number of persons with dementia increase, so does the need for decision-making capacity assessments (DMCAs). Many healthcare professionals (HCPs), however, do not feel prepared to conduct DMCAs. We have provided 4-h DMCA workshops to HCPs since 2006 and offered physicians either a 3-h or 2-day DMCA workshop from 2013 to present. We evaluated the effectiveness of the workshops on self-reported key concepts of capacity. DESIGN: Pre-/post-test design. SETTING: DMCA workshops for physicians across Canada and HCPs within Alberta. PARTICIPANTS: Two hundred and eighty-one physicians and 835 HCPs. MEASUREMENTS: Pre-/post-workshop ratings on level of comfort with and understanding of 15 core DMCA concepts using 4-point Likert-type items. RESULTS: For the DMCA workshops among physicians, ten 3-h workshops were held in 2014-2015 with 166 participants and seven 2-day workshops, between 2014 and 2018, with 115 participants. With respect to the self-report on core DMCA concepts, at least 62.7% (range: 62.7%-89.6%) of physician participants had higher post-workshop ratings (sign test; p < 0.001) than pre-workshop ratings for all core DMCA concepts. For the DMCA workshops among HCPs, 4-h workshops were delivered to 835 HCP participants from 2008 to 2012. At least 49.6% of participants (range: 49.6%-78.9%) had increased post-workshop ratings (sign test; p < 0.001) for all level of comfort items with and understanding of core DMCA concepts. CONCLUSION: There is a need for DMCA training for physicians and HCPs. The content and method of the workshops are effective at enhancing self-reported level of comfort with and understanding of core DMCA concepts.