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

Abstract

Objective Suboptimal glycemic control and psychosocial challenges are significant concerns for adolescents and emerging adults (collectively young people) with type 1 diabetes. Knowledge about young peoples’ attitudes towards living with type 1 diabetes is inadequate, but the issue is important in the development of strategies to improve glycemic control and psychosocial well-being. This study explored young peoples’ perceptions of living with type 1 diabetes. Methods An exploratory, qualitative design was employed. Data were collected through five participatory workshops with 19 young people (age 15–25). Data were thematically analyzed. Results The overall depiction of living with type 1 diabetes was paradoxical; it affected everything and nothing. Living with type 1 diabetes was a balancing act between accommodating a “normal” way of living and self-management tasks of the treatment regimen. Participants’ perceptions reflected shifting accounts that could be divided into five themes: (1) special rules during youth, (2) striving for autonomy, (3) an uncertain future, (4) social support, and (5) stigma and disclosure. Discussion 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 relational aspects, including stigma mechanisms, the role of friends, and facilitation of balanced parental involvement.

Disruption, worries and autonomy in the everyday lives of adolescents with type 1 diabetes and their family members: A qualitative study of intrafamilial challenges

“…Daily life is marked by worries for especially parents and siblings, whereas the adolescents take a lighter approach to dealing with life with diabetes and the ensuing risks. This finding contrasts with other studies, which have found adolescents with type 1 diabetes to have day-to-day worries in addition to being worried about long-term issues; participants in one study spoke specifically of constant worries and the fearfulness that goes with worries (Ingersgaard et al, 2019;King et al, 2017). A part of the explanation for this could be that young people are focused on the experience of the present and are living primarily from day-to-day, without devoting much attention to potential future complications.…”

“…Type 1 diabetes in a family setting alters and disrupts previous family life and entails the entire family perpetually focusing on diabetes and its management. The disruptive nature of diabetes has also been demonstrated in earlier studies (Dickinson & O'Reilly, 2004;Ingersgaard et al, 2019;Marshall et al, 2009) and implied in other studies, such as Dickinson and O'Reilly (2004), who showed that adolescents found it frustrating to carry diabetes supplies around at all times and to have to be prepared for any situation. Kingod and Grabowski (2020) specifically explored the concept of disruption from the perspective of parents of young children with type 1 diabetes and described the notion of chronic disruption, which refers to the state of chronic vigilance parents are in.…”

“…Furthermore, the present study positions the perpetuality of type 1 diabetes as a core element of disrupted daily life. Constant awareness of diabetes and the fixity of diabetes care have been established in several qualitative studies (Dickinson & O’Reilly, 2004; Ingersgaard et al., 2019; King et al., 2017), but the link between disruption and the perpetuality of diabetes has not been made before. Thus, the present study expands on the understanding of diabetes as a disruption by recognising perpetuality as a key source of disruption in family life.…”

“…Thus, adolescent-parent dyads would benefit from guidance and support in dealing with emancipation. Ingersgaard et al, 2019;Karlsson et al, 2008). Ultimately, adolescence with type 1 diabetes constitutes a challenging period marked by changes and shifts for the adolescents themselves as well as for their immediate family.…”

“…However, identifying the appropriate degree of parental support, responsibility and involvement in diabetes care, without compromising the adolescent's autonomy and attempts at independence, remains a major challenge in families with type 1 diabetes (Ingersgaard et al., 2019; Markowitz et al., 2015; Redondo et al., 2017; Young et al., 2014). Challenges related to the amount and type of parental involvement result in, for example, diabetes‐related conflict (Dickinson & O’Reilly, 2004; Schilling et al., 2006; Weinger et al., 2001), discrepancies in views on the adolescent's competency (Butner et al., 2009) and cause adolescents to perceive their parents’ efforts as nagging, questioning and blaming (Davidson et al., 2004; Ingersgaard et al., 2019; Karlsson et al., 2008). Ultimately, adolescence with type 1 diabetes constitutes a challenging period marked by changes and shifts for the adolescents themselves as well as for their immediate family.…”