An exploratory study of how young people experience and perceive living with Type 1 diabetes during late adolescence and emerging adulthood

Marianne Vie Ingersgaard*, Dan Grabowski, Ingrid Willaing, Didde Høeg

*Corresponding author af dette arbejde


Introduction: Suboptimal glycemic control and psychosocial challenges are significant concerns for adolescents and emerging adults (collectively “young people”) with type 1 diabetes (T1D). Knowledge about young peoples’ attitudes towards living with T1D is inadequate, but the issue is important to improve glycemic control and psychosocial well-being in this population.

Objectives: To explore young peoples’ perceptions of living with T1D.

Methods: An exploratory, qualitative design was employed. Data were collected through 5 participatory workshops with 19 young people (age 16-25). Data were thematically analysed.

Results: Participants’ perceptions could be divided into five themes. Special rules during youth: Participants struggled with making T1D a priority in their lives. They justified the downgraded priority of T1D by the developmental state of youth. Striving for autonomy: Participants strove for autonomy, however, their need for autonomy was counterbalanced by their need for parental support. An uncertain future: Participants were uncertain about the outlook of their future in terms of diabetes-related complications, pregnancy and generic heritage of T1D. Social support: Participants sought and received social support from family and friends, although preferences for support ranged from wanting minimal involvement of others, to wanting and benefitting from assistance. Stigma and disclosure: Participants perceived T1D as stigmatized. Disclosing T1D presented participants with a dilemma that included balancing the pros of having others help them if something acute occurred with not wanting them to know about their T1D because they did not want to stand out because of their diabetes.

Conclusions: It is important to probe for the multiple and interrelated social contexts that underlie young peoples’ motives for adhering to and deviating from treatment regimens. Future studies should focus on identity issues, stigma mechanisms, the role of friends, and facilitation of balanced parental support.
StatusUdgivet - 2019