The increasing prevalence of dementia in older adults will increase the demands for care from families and the health care system. Caring for a relative with dementia is often viewed as burdensome and stressful in nature; however, of late, attention has been given to the positive aspects of the caregiving journey. The purpose of this article is to discuss the qualitative findings related to the positive aspects of family caregiving from a mixed methods study. A strengthsbased perspective was used in the secondary analysis of six focus groups (N = 36) and three personal interview transcripts of family caregivers to persons with dementia. Findings reveal that family caregivers can view their role as an opportunity to give back, to discover personal strengths, and to become closer to the care receiver. The results suggest that identifying and mobilizing caregiver strengths can be an effective strategy for supporting family caregivers in their role.
Little attention has been given to the perceptions of formal care providers on the nature and quality of home- and community-based dementia care. The purpose of this descriptive interpretive research was to explore formal care providers' perceptions of their experiences with Canadian home- and community-based dementia care. Participants within three personal interviews and six focus groups (n = 41) included nurses, social workers, therapists, home care aides, and Alzheimer Society personnel (front line/management) in rural and urban areas of Saskatchewan (n = 16), Manitoba (n = 20), and Ontario (n = 8). Two overarching thematic categories, Service Availability and Service Acceptability, emerged from the data analysis. Subthemes of availability were identified as: (a) challenges of service availability, including service wait lists, lack of home care provider training, lack of community-based dementia care infrastructure, and sociocultural and geographic barriers to accessing dementia services; and (b) essential facilitators of availability, including service infrastructure, service bridging, and agency partnerships to form coordinated care systems. Subthemes of acceptability were revealed as: (a) essential components of dementia care, including provision of comprehensive personal care and the use of dementia care professional practice knowledge within a home care setting; and (b) service challenges, including inadequate service time for the physical care and socioemotional support of the client and family caregiver, caregiver and formal provider difficulty with navigation of a fragmented care system, lack of system coordination, and financial costs of services. Essential, integrated dementia care could be established by listening to the "voices of formal care providers," thereby decreasing dementia care costs and increasing the quality of life for those with dementia, and their family caregivers.
Background: Canadian Indigenous populations experience significantly more chronic kidney disease (CKD) than the general population. Indigenous people who live in rural and remote areas may also have difficulty accessing both information and care for their CKD. Informed decision making about treatment options for advancing kidney disease may be delayed, which can result in poor health outcomes and decreased quality of life. Moreover, Indigenous people may experience marginalization within Western health care systems. Objective: The objective of this scoping review is to identify culturally appropriate and co-developed Indigenous educational tools that will ultimately support CKD learning and end-stage kidney treatment decision making. Design: Scoping Review Setting: Databases included Embase, CINAHL, Medline (OVID), ERIC, and the Canadian Agency for Drugs and Technology Gray Matters. Study Participants: Community-based Indigenous patients, families, health care workers, and community members. Methods: We systematically reviewed the literature to explore the availability of co-developed Indigenous educational tools and material for CKD treatment options. Titles, abstracts, and full texts were reviewed independently by 2 reviewers with disagreements resolved through a third. All aspects of this project, including searching the databases were done in consultation with an Indigenous Elder. Results: Only one retrieved article identified a comprehensive CKD tool co-developed by researchers, health care providers, and an Indigenous community. Three themes emerged from the scoping review that may inform characteristics of co-developed tools: cultural appropriateness; appraisal of utility and effectiveness and; content informed by co-development of traditional and Western chronic disease knowledge. Limitations: Consistent with scoping review methodology, the methodological quality of included studies was not assessed. In addition, it was difficult to synthesize the findings from the research and gray literature. Conclusion: Little is known about the co-development of Indigenous educational tools for CKD. Further in-depth understanding is required about how to best engage with Indigenous communities, specifically to co-develop contextualized CKD tools that are acceptable to Indigenous people. Trial registration: Not applicable as this review described secondary data.
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