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What’s distressing about having type 1 diabetes? A qualitative study of young adults’ perspectives

Myles Balfe12*, Frank Doyle3, Diarmuid Smith4, Seamus Sreenan5, Ruairi Brugha1, David Hevey6 and Ronan Conroy1

Author Affiliations

1 Department of Public Health Medicine and Epidemiology, Royal College of Surgeons in Ireland, St. Stephen’s Green, Dublin, Ireland

2 Department of Sociology, University College Cork, Cork, Ireland

3 Department of Psychology, Royal College of Surgeons in Ireland, St. Stephen’s Green, Dublin, Ireland

4 Endocrinology Department, Beaumont Hospital, Dublin, Ireland

5 Endocrinology Department, Connolly Hospital, Dublin, Ireland

6 Department of Psychology, Trinity College Dublin, Dublin, Ireland

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BMC Endocrine Disorders 2013, 13:25  doi:10.1186/1472-6823-13-25

Published: 25 July 2013



Diabetes distress is a general term that refers to the emotional burdens, anxieties, frustrations, stressors and worries that stem from managing a severe, complex condition like Type 1 diabetes. To date there has been limited research on diabetes-related distress in younger people with Type 1 diabetes. This qualitative study aimed to identify causes of diabetes distress in a sample of young adults with Type 1 diabetes.


Semi-structured interviews with 35 individuals with Type 1 diabetes (23–30 years of age).


This study found diabetes related-distress to be common in a sample of young adults with Type 1 diabetes in the second phase of young adulthood (23–30 years of age). Diabetes distress was triggered by multiple factors, the most common of which were: self-consciousness/stigma, day-to-day diabetes management difficulties, having to fight the healthcare system, concerns about the future and apprehension about pregnancy. A number of factors appeared to moderate distress in this group, including having opportunities to talk to healthcare professionals, attending diabetes education programmes and joining peer support groups. Young adults felt that having opportunities to talk to healthcare professionals about diabetes distress should be a component of standard diabetes care.


Some aspects of living with diabetes frequently distress young adults with Type 1 diabetes who are in their twenties. Clinicians should facilitate young adults’ attendance at diabetes education programmes, provide them with opportunities to talk about their diabetes-related frustrations and difficulties and, where possible, assist in the development of peer-support networks for young adults with diabetes.

Young adult; Distress; Qualitative; Type 1 diabetes; Emerging adulthood