Kristen Jacklin

Developing a participatory Aboriginal health research project: "Only if it's going to mean something".

Community-based research methods were used in a study of health needs with the Wikwemikong Unceded Indian Reserve, Ontario, Canada based on critical theory, Indigenous teachings and participatory action research (PAR). The process of developing the project led to the elucidation of eight key principles deemed necessary for the development of a project that is both culturally and community appropriate: Partnership, empowerment, community control, mutual benefit, wholism, action, communication and respect. Adherence to these eight principles appears necessary for an ethical and an effective research process in Aboriginal communities.

Diversity within: Deconstructing Aboriginal community health in Wikwemikong Unceded Indian Reserve

This paper analyzes the community health of the Wikwemikong Unceded Indian Reserve (WUIR), Ontario, Canada. Results are reported from fieldwork including participant observation, key informant interviewing and self-reported data measuring health status, risk behaviour, place of residence, self-identity, and personal history extracted from 350 interviews conducted during a community-wide needs assessment. The research aimed to create a health plan for the community; however, subsequent analysis of the needs assessment results indicates that internal diversity exists in health status and needs between the seven villages that comprise WUIR. The analysis suggests variation in health status and risk-taking behaviour among community members may be related to varying colonial histories among the villages. The implications of intra-community variation in health status in First Nations are discussed in relation to influential health policy theories such as the determinants of health and health transfer policy in Canada.

Challenges and Rewards of Health Research in Northern, Rural, and Remote Communities

PURPOSE This article, based on our collective experience of conducting population-based and industrially based health research in partnership with northern, rural, and remote communities in Canada and Australia, will convey the related challenges and opportunities, and provide recommendations. METHODS (1) The role(s) of northern, rural, and remote communities; (2) ethics requirements; (3) study budgets and contracts; (4) questionnaire design, response rates, and the collection of biological specimens; and (5) preparation and presentation of results, their impact, knowledge translation, and future studies were considered. RESULTS In our experience, it is important to be collaborative, respectful, and have a regular physical presence in such communities. Academic and community ethical review of the proposed research may be required. Written research proposals, contracts, and a communication plan for the results are strongly recommended. Questionnaire construction and acceptable methodology impact study success. Regular in person feedback to the communities is essential. It is important to collaboratively establish future related research priorities. CONCLUSIONS Although academic evaluation can promote the desire for the conduct of more rapid health research, successful research with northern, rural, and remote communities should build community capacity and requires time, a continuing presence, collaboration, respect, and active community involvement.

Health care experiences of Indigenous people living with type 2 diabetes in Canada

BACKGROUND: Indigenous social determinants of health, including the ongoing impacts of colonization, contribute to increased rates of chronic disease and a health equity gap for Indigenous people. We sought to examine the health care experiences of Indigenous people with type 2 diabetes to understand how such determinants are embodied and enacted during clinical encounters. METHODS: Sequential focus groups and interviews were conducted in 5 Indigenous communities. Focus groups occurred over 5 sessions at 4 sites; 3 participants were interviewed at a 5th site. Participants self-identified as Indigenous, were more than 18 years of age, lived with type 2 diabetes, had received care from the same physician for the previous 12 months and spoke English. We used a phenomenological thematic analysis framework to categorize diabetes experiences. RESULTS: Patient experiences clustered into 4 themes: the colonial legacy of health care; the perpetuation of inequalities; structural barriers to care; and the role of the health care relationship in mitigating harm. There was consistency across the diverse sites concerning the root causes of mistrust of health care systems. INTERPRETATION: Patients’ interactions and engagement with diabetes care were influenced by personal and collective historical experiences with health care providers and contemporary exposures to culturally unsafe health care. These experiences led to nondisclosure during health care interactions. Our findings show that health care relationships are central to addressing the ongoing colonial dynamics in Indigenous health care and have a role in mitigating past harms.

Informal Dementia Caregiving Among Indigenous Communities in Ontario, Canada.

Recent studies suggest dementia is an emerging health issue for Indigenous peoples in Canada. In this article, we explore findings concerning informal dementia caregiving in Indigenous communities. Our research has been carried out in partnership with Indigenous communities in Ontario, Canada, over the past 4 years. Semistructured in-depth interviews were carried out with informal Indigenous caregivers (primarily family) to Indigenous people with dementia at 7 geographically and culturally diverse research sites (n = 34). We use a critical interpretive and postcolonial lens to explore common caregiving experiences and patterns to gain insight into Indigenous models of care and better understand how to appropriately support Indigenous families dealing with a dementia diagnosis. Themes from the interview data are explored through a storyline beginning with why and how participants came to the caregiving role; the challenges, struggles, and decisions along the way; and reflections on the rewards and benefits of caring for a loved one with dementia. The findings suggest that underlying Indigenous values created a consistent family caregiving model across the Indigenous cultures and geographic contexts included in the study. Family caregiving was found to facilitate cultural continuity through intergenerational contact and the transmission of cultural knowledge. Diverse community contexts presented significant challenges most immediately attributable to the nature of relations between Indigenous and non-Indigenous Canadians and the continued colonial policies governing access to services.

An innovative sequential focus group method for investigating diabetes care experiences with indigenous peoples in Canada

This article describes the innovative use of sequential focus groups (SFGs) with Indigenous adults living with type 2 diabetes. This use of SFGs has not been previously described in the literature. In our project, SFGs were used to explore Indigenous people’s experiences in managing their diabetes. Our research objective has been to elucidate deep understandings of these experiences in order to inform the development of continuing medical education curriculum with the aim of improving approaches to diabetes care for Indigenous people. Working in partnerships with Indigenous health organizations, we recruited four groups comprising participants from diverse Indigenous communities (two urban, two rural) in three provinces of Canada. We conducted a series of five focus groups (SFGs) with the same participants (6–8 participants) at each site for a total of 20 focus groups and 29 participants. Indigenous people living with type 2 diabetes were asked open-ended questions concerning their experiences with diabetes and diabetes care in primary health-care settings. Our findings concerning the use of SFGs for Indigenous health research draw on team member and participants’ reflections captured in facilitator field notes, memos from debriefing sessions, and focus group transcripts. The SFG approach enabled in-depth exploration of the complex, and at times sensitive, issues related to Indigenous people’s views on diabetes and their experiences of diabetes care. The repeated sessions facilitated comfort and camaraderie among participants, which led to insightful sessions filled with personal and emotional stories of living with diabetes, the impacts of colonization, and health-care experiences. Overall, the method fostered a deeper level of engagement, exploration, and reflection than a single-session focus group typically would. We suggest this adaptation of the traditional single-session focus groups would be applicable to a wide variety of research concerning sensitive health topics with vulnerable populations.

Development and use of health-related technologies in indigenous communities: Critical review

Background Older Indigenous adults encounter multiple challenges as their age intersects with health inequities. Research suggests that a majority of older Indigenous adults prefer to age in place, and they will need culturally safe assistive technologies to do so. Objective The aim of this critical review was to examine literature concerning use, adaptation, and development of assistive technologies for health purposes by Indigenous peoples. Methods Working within Indigenous research methodologies and from a decolonizing approach, searches of peer-reviewed academic and gray literature dated to February 2016 were conducted using keywords related to assistive technology and Indigenous peoples. Sources were reviewed and coded thematically. Results Of the 34 sources captured, only 2 concerned technology specifically for older Indigenous adults. Studies detailing technology with Indigenous populations of all ages originated primarily from Canada (n=12), Australia (n=10), and the United States (n=9) and were coded to four themes: meaningful user involvement and community-based processes in development, the digital divide, Indigenous innovation in technology, and health technology needs as holistic and interdependent. Conclusions A key finding is the necessity of meaningful user involvement in technology development, especially in communities struggling with the digital divide. In spite of, or perhaps because of this divide, Indigenous communities are enthusiastically adapting mobile technologies to suit their needs in creative, culturally specific ways. This enthusiasm and creativity, coupled with the extensive experience many Indigenous communities have with telehealth technologies, presents opportunity for meaningful, culturally safe development processes.

SUPPORTING DEMENTIA TECHNOLOGY DEVELOPMENT IN INDIGENOUS COMMUNITIES IN CANADA: RESPECTING “THE WAY THAT WE ARE”

used (Figure 2). These data also highlight groupwise differences between the PCA and control groups, for example the PCA group was significantly more likely to repeat the wake word when using the devices (p< 0.034, U1⁄424877238). Conclusions:For this group of people with PCA the Amazon Echo facilitated independence overall. The Echo is also a useful device for collecting large, rich datasets from people with dementia in a naturalistic setting. We hope that findings from this proof of concept trial can inform further research into voice-assistive technologies for people with dementia. References: 1. Firth et al, arXiv:1706.06176 [cs.HC].