Indigenous research methodology in action: the development of a functional assessment tool for dementia

Abstract

iii Abstract Dementia rates are rising significantly among Indigenous populations in Canada. The criteria for dementia diagnosis include assessing cognitive impairment and its impact on conducting everyday activities. Among everyday activities, the Instrumental Activities of Daily Living (IADLs) decline in the early stage of dementia. It includes cognitively complex activities such as grocery shopping, managing personal finances, cooking, laundry, etc. The existing IADL assessment tools are mainly developed and validated for the English- speaking White population and may be culturally inappropriate for use in an Indigenous context. Thus, to address this, I aimed: (1) to identify methods and approaches used in adapting and developing health assessment tools used for Indigenous populations across Canada, USA, Australia and Aotearoa/New Zealand, and (2) to conduct preliminary community-based research to inform the development of an Indigenous Functional Assessment tool. The first phase of the study consisted of a scoping review. Five databases and three grey literature engines were searched from January 1st, 2000, to October 31st, 2021. An Indigenous Wholistic Framework was used to map the evidence. The second phase of the study was conducted in partnership with Maamwesying North Shore Community Health Services. The two focus groups were conducted with Indigenous and non-Indigenous health professionals assessing cognitive and functional decline in the Indigenous communities. The aim was to understand their experiences and perspectives and explore domains for a culturally relevant and appropriate functional assessment tool. A Community Advisory iv Group, including an Elder, was formed to guide the research process. Thematic analysis was used to analyze the qualitative data. The review identified the increasing use of Indigenous approaches in adapting and developing health assessment tools. Most of the tools were adapted and developed using the concepts of respect, relevance, responsibility, and reciprocity. The thematic analysis in the second phase identified six themes and eleven sub-themes. These themes included Indigenous understanding of dementia, late diagnosis and disease progression, challenges faced by health professionals, barriers to accessing health services, approaches to potential Functional Assessment tools and domains of a new tool. The scoping review provided evidence of evolving standard approaches and methods while adapting and developing health assessment tools in Indigenous contexts. Furthermore, the community-based study was the first to understand the health professionals’ perspectives regarding culturally appropriate functional assessment tools. It will lead a path for Maamwesying to prepare for research and development of functional assessment tool.