title: Adult-Onset Type 1 Diabetes: A Qualitative Study of Decision-Making Needs.
abstract: BACKGROUND
  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.
  
  
  OBJECTIVE
  The aim of this study was to explore the diabetes-related decision-making needs of people diagnosed with adult-onset type 1 diabetes.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Bruyère Research Institute and University of Ottawa, Ottawa, Ontario, Canada. Electronic address: jjull013@uottawa.ca.
authors.forename: Janet
authors.initials: J
authors.lastname: Jull
authors.affiliation: 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.
authors.forename: Holly O
authors.initials: HO
authors.lastname: Witteman
authors.affiliation: Ottawa, Ontario, Canada.
authors.forename: Judi
authors.initials: J
authors.lastname: Ferne
authors.affiliation: Faculty of Social Sciences, University of Ottawa, Ottawa, Ontario, Canada.
authors.forename: Manosila
authors.initials: M
authors.lastname: Yoganathan
authors.affiliation: Faculty of Health Sciences, University of Ottawa and Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
authors.forename: Dawn
authors.initials: D
authors.lastname: Stacey
mesh_terms: D000328:Adult; D017668:Age of Onset; D003657:Decision Making; D003661:Decision Support Techniques; D003922:Diabetes Mellitus, Type 1 / Q000175:diagnosis / Q000523:psychology / Q000628:therapy*; D019468:Disease Management; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010358:Patient Participation; D011379:Prognosis; D036301:Qualitative Research
keywords: adult; adulte; decision making; diabète de type 1; needs assessment; prise de décision; qualitative research; recherche qualitative; type 1 diabetes; évaluation des besoins