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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.

Author information

1
Bruyère Research Institute and University of Ottawa, Ottawa, Ontario, Canada. Electronic address: jjull013@uottawa.ca.
2
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.
3
Ottawa, Ontario, Canada.
4
Faculty of Social Sciences, University of Ottawa, Ottawa, Ontario, Canada.
5
Faculty of Health Sciences, University of Ottawa and Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.

Abstract

INTRODUCTION:

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.

KEYWORDS:

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

PMID:
26923335
DOI:
10.1016/j.jcjd.2015.09.080
[Indexed for MEDLINE]

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