“It's a part of what I am, but not all of who I am”: A qualitative study of identity formation in adolescents and emerging adults with type 1 diabetes

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  • Marianne Vie Ingersgaard
  • Dan Grabowski
  • Ingrid Willaing
  • Tine Tjørnhøj-Thomsen
Type 1 diabetes mellitus (diabetes) is among the most prevalent chronic illnesses in young people in their teens and early twenties, periods commonly referred to as adolescence and emerging adulthood, respectively (Arnett, 2000, 2007). Diabetes is caused by autoimmune destruction of pancreatic beta cells, leading to absolute deficiency of insulin, a vital hormone that facilitates glucose entry into body cells. Adolescents and emerging adults (young people) living with diabetes face the ongoing challenge of regulating their blood glucose levels due to the absence of their own insulin production. Achieving this balance requires careful management of exogenous insulin therapy, administered through injections, or a continuous insulin infusion pump attached to the body, with carbohydrate intake and physical activity. Regular monitoring of blood glucose is essential, whether through traditional finger-prick methods or continuous glucose monitoring devices (CGM). Living with diabetes is thus a demanding daily commitment for young people as they navigate the complexities of diabetes management. This includes tasks such as calculating carbohydrate intake, administering precise insulin doses at specific times, managing diabetes devices (i.e., CGM, insulin pump, or pen), and so forth. These responsibilities unfold amidst their participation in daily activities and their navigation of normative developmental tasks (e.g., acquiring autonomy, building peer relationships, identity formation, emotional regulation, etc.). The experience of living with diabetes has often been described as a balancing act, where young people strive to embrace a “normal” way of living while managing the treatment regimen without compromising either health (Dovey-Pearce, Doherty, & May, 2007; Hussein, Jespersen, Ingersgaard, Skovby, & Grabowski, 2023; Ingersgaard, Hoeeg, Willaing, & Grabowski, 2019; Sanders, Elliott, Norman, Johnson, & Heller, 2019). However, the complexity and demanding nature of this treatment regimen present significant challenges to young people, often perceived as an ongoing ‘disruption’ to their daily lives (Sanders et al., 2019). Research consistently demonstrates that young encounter significant impairments in their diabetes care practices and struggle to maintain optimal glycaemic outcomes, as indicated by sustained elevated Haemoglobin A1c (HbA1c) levels (Clements et al., 2016; Foster et al., 2019; Gonzalez, Tanenbaum, & Commissariat, 2016; Helgeson, Siminerio, Escobar, & Becker, 2008; Hilliard, Wu, Rausch, Dolan, & Hood, 2013). Elevated HbA1c levels introduces a risk for diabetes complications such as nephropathy, retinopathy, neuropathy, and macrovascular disease (Anderzén, Samuelsson, Gudbjörnsdottir, Hanberger, & Åkesson, 2016; Donaghue et al., 2018; Miller et al., 2015). Additionally, young people are more prone to psychological challenges compared to their healthy peers, facing heightened stress and pressure due to their unique circumstances. Notably, there is a higher prevalence of depression, anxiety, psychological distress, eating disorders, and diminished self-esteem in young people living with diabetes (de Wit et al., 2022; Hislop, Fegan, Schlaeppi, Duck, & Yeap, 2008; Jaser, 2010; Małachowska, Gosławska, Rusak, & Jarosz-Chobot, 2023). Additionally, one-third of young people experience high levels of diabetes distress, characterized by negative emotions arising from living with diabetes (Hagger, Hendrieckx, Sturt, Skinner, & Speight, 2016).
Original languageEnglish
Article number100391
JournalSSM - Qualitative Research in Health
Volume5
Number of pages10
ISSN2667-3215
DOIs
Publication statusPublished - 2024

ID: 384742055