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Can J Diabetes. 2016 Apr;40(2):164-9. doi: 10.1016/j.jcjd.2015.09.080. Epub 2016 Feb 26.

Adult-Onset Type 1 Diabetes: A Qualitative Study of Decision-Making Needs.

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Bruyère Research Institute and University of Ottawa, Ottawa, Ontario, Canada. Electronic address:
Department of Family and Emergency Medicine, Office of Education and Continuing Professional Development, Laval University, Québec, Québec, Canada; Population Health and Optimal Health Practices Research Unit, CHU de Québec, Québec, Canada.
Ottawa, Ontario, Canada.
Faculty of Social Sciences, University of Ottawa, Ottawa, Ontario, Canada.
Faculty of Health Sciences, University of Ottawa and Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.



Type 1 diabetes is an autoimmune disease resulting from insulin deficiency and must be carefully managed to prevent serious health complications. Diabetes education and management strategies usually focus on meeting the decision-making needs of children and their families, but little is known about the decisional needs of people with adult-onset type 1 diabetes.


The aim of this study was to explore the diabetes-related decision-making needs of people diagnosed with adult-onset type 1 diabetes.


An interpretive descriptive qualitative study was conducted. Participants who self-identified as having adult-onset type 1 diabetes were interviewed using a semistructured interview guide. Transcripts were coded to identify needs, supports and barriers using thematic analysis.


Participating in the study were 8 adults (2 men, 6 women), ages 33 to 57, with type 1 diabetes for durations of 1 to 20 or more years. Their decision-making needs are summarized in 6 broad themes: 1) people diagnosed with type 1 diabetes are launched into a process of decision-making; 2) being diagnosed with type 1 diabetes means you will always have to make decisions; 3) knowledge is crucial; 4) personal preferences matter; 5) support is critical for decisions about self-care in type 1 diabetes; 6) living with type 1 diabetes means making very individualized decisions about daily life.


The findings describe the sudden and ubiquitous nature of type 1 diabetes decision-making and the need to tailor approaches for making care decisions in type 1 diabetes. People diagnosed with adult-onset type 1 diabetes require access to reliable information, support and opportunities for participation in decision-making.


adult; adulte; decision making; diabète de type 1; needs assessment; prise de décision; qualitative research; recherche qualitative; type 1 diabetes; évaluation des besoins

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