Psychosocial and Management Experiences of Canadian Family Members Living with People with Diabetes: The Second Diabetes Attitudes, Wishes and Needs Study (DAWN2™)

Abstract Aim: To explore the psychosocial impacts, needs and wishes of Canadian Family Members (FMs) of People With Diabetes (PWD), as part of the second global Diabetes Attitudes, Wishes and Needs (DAWN2™) study. Methods: Over 2000 FMs including 121 Canadians participated in an online survey comprising various standardized, adapted, original DAWN, new and openended questions to determine and assess the lived experiences of FMs. The literature is void of such instruments specifically for FMs living with persons with chronic conditions such as diabetes. Criteria were set for FM recruitment. Data were weighted for descriptive quantitative and qualitative analysis. Results: Many Canadian FMs reported a positive impact of diabetes (40%), good/very good quality of life (76%), and good well-being (78%). Negative aspects included high diabetes distress (33%), being very worried about hypoglycemic events (40%), “moderate” to “very large” burden (26%), and a negative impact on at least one aspect of life (58%), with the largest negative effect on emotional well-being (38%). About 40% of FMs indicated that they wanted to be more involved in the care of PWD, but were frustrated with not knowing how to help. Of the 37% of FMs who participated in diabetes educational programs, 64% said that the education was helpful. In addition, 34- 37% of FMs indicated their desire for more diabetes care and support in their communities/area, more medical treatments available for PWD, and more general information about diabetes to help them better support PWD they live with. Conclusions: In summary, diabetes has both negative and positive impacts on FMs of PWD. Gaps and needs in support and management were identified. The global including Canadian DAWN2 data provide benchmarking indicators of FMs' psychosocial and management needs that will help identify local level interventions, including education required to improve the lives of FMs and the PWD they care for.