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

Abstract

BackgroundDiabetes 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.MethodsSemi-structured interviews with 35 individuals with Type 1 diabetes (23–30 years of age).ResultsThis 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.ConclusionsSome 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.

The Detection and Management of Diabetes Distress in People With Type 1 Diabetes

“…Indeed, the most commonly reported emotional problems in Type 1 diabetes relate to hypoglycaemia and complications; worry about the future and complications, feeling burnt out/overwhelmed, and worrying about low blood sugar reactions (5-7), whereas in Type 2 diabetes emotional distress relates more to goal setting and food restrictions (7). Qualitative work confirms stressors unique to Type 1 diabetes; realisation of the possible consequences of previously poor self-management as adolescents, apprehension about pregnancy, anxiety about being perceived to have Type 2 diabetes, frustration competing for resources with Type 2 diabetes and a great many concerns specific to insulin use (8,9). Our own case note documentary analysis observed differences in the manifestation of DD in the two populations (10).…”

What is diabetes distress and how can we measure it? A narrative review and conceptual model

“…This finding is somewhat unsurprising given distinctions in the developer's goals, and some of the relative omissions may reflect imbalance in the populations from which the items were derived in accordance with these aims. For example, numerous aspects of DD that are unique to type 1 diabetes have recently been identified (Balfe et al, 2013;Fisher et al, 2015) and this formed the basis for developing the T1-DDS (Fisher et al, 2015). They may also reflect distinctions in methodological approach; the DDS items reflect four domains considered central to diabetes-related emotional distress created a priori based on focus groups discussions whereas the PAID was not apparently informed by any such structure when it was developed 10 years earlier.…”

“…Explicit description of development work is critical so that readers are able to discern whether content validity has been achieved (European Medicines Agency Committee for Medicinal Products for Human Use, 2005; U.S. Department of Health and Human Services, 2009). In the absence of further information, and recent qualitative research suggesting aspects of DD that are not captured in these measures (Balfe et al, 2013;Tanenbaum et al, 2016), it does not appear that any single existing measure of DD meets required standards for assuring content validity or offers a fully comprehensive measure of DD.…”

“…People with diabetes report that the support (or lack of support) -informational, instrumental, emotional -from health care professionals is pivotal to emotional well-being and expertise in self-management (Balfe et al, 2013;Furler et al, 2008;Thorne & Paterson, 2001). The PAID items were initially developed via patient interviews but also in consultation with health care professionals; perhaps provider-related distress was less likely to be elicited.…”

Using Photo-Elicitation to Explore Young Adult Perspectives on Coping with Type 1 Diabetes

“…The psychological impacts of diabetes resulting in depression, anxiety, and distress can negatively affect self-management and quality of life, especially for young people [4]. Balfe and colleagues found that young adults with type 1 diabetes experienced distress regarding their daily management needs, stigma, and worry about their future [5]. In a study by Palladino et al [6], emerging adults with diabetes report lower level of life satisfaction and life purpose than peers living without type 1 diabetes.…”