Moving the Journey Towards Independence: Adolescents Transitioning to Successful Diabetes Self-Management

Abstract

Purpose To gain a greater understanding of adolescent’s experiences living with Type 1 diabetes mellitus (T1DM) and create a theoretical paradigm. Methods Grounded theory as described by Glaser was used. Fifteen in-depth interviews were conducted with adolescent’s ages 11 to 15 with T1DM. Symbolic interactionism is the theoretical framework for grounded theory. Data were collected; transcribed, coded, and analyzed simultaneously using constant comparative analysis and findings were grounded in the words of participants. Results A theoretical model was created with the concept of “normalizing”. Normalizing was defined as the ability to integrate diabetes into one’s daily life to make diabetes ‘part of me’. Phase four of the model, and the focus of this manuscript was “Moving the Journey towards Independence” and included: 1) taking over care, 2) experiencing conflict with parents, and 3) realizing diabetes is hard. The major task for adolescents in this phase was separating from parents to independently manage diabetes. The normalizing task for this phase was: “taking on the burden of care”. Adolescents described challenges with independent care and increased parental conflict including: fearing needles, forgetting insulin, feeling embarrassed and believing that diabetes was a burden in their life. Additionally, juggling the multiple responsibilities of home, school and work along with managing a chronic illness during adolescence is challenging. Conclusions Transitioning to diabetes self-management is a challenge for adolescents. This model advances understanding of the moving processes in adolescents transitioning; additionally, hypotheses are presented that may be used for developing interventions to promote success in self-management.

Adolescents’ perceptions of the transition process from parental management to self‐management of type 1 diabetes

“…Although the adolescents described the transition of responsibility as a natural and desirable process, self‐care was demanding and time‐consuming. King, King, Nayar and Wilkes described a constant struggle with self‐care among adolescents, and Babler and Strickland described the gradual transfer of responsibility as the most crucial period for young people with T1D with a gradual understanding of the challenges. To cope satisfactorily with the challenges related to self‐care, the adolescents in our study reported a need for new knowledge and skills.…”

ISPAD Clinical Practice Consensus Guidelines 2018: Psychological care of children and adolescents with type 1 diabetes

“…Research has shown that when parents allow older children and adolescents to have self‐management autonomy without sufficient cognitive and social maturity, youths are more likely to have problems with diabetes management . Thus, a critical aspect of behavioral family management of diabetes is finding ways for parents and family members to remain involved and supportive, but not intrusive, in their children's daily care . A randomized controlled trial for positive parenting provides some support for improving parent and family outcomes, and reducing child internalizing and externalizing behavior problems …”

“…195 Thus, a critical aspect of behavioral family management of diabetes is finding ways for parents and family members to remain involved and supportive, but not intrusive, in their children's daily care. 196 A randomized controlled trial for positive parenting provides some support for improving parent and family outcomes, and reducing child internalizing and externalizing behavior problems. 197 An intervention delivered during regular outpatient clinic visits and based on family-focused teamwork was shown to increase family involvement without causing family conflict or adversely affecting youth quality of life, and helped to prevent worsening of glycemic control.…”

Supporting children and young people to assume responsibility from their parents for the self‐management of their long‐term condition: An integrative review

“…Among the 10 studies assessed as “fair,” common limitations included unclear sampling strategies, poor consideration of ethical issues and bias, and limited transferability due to minimal description of the study context and setting. However, as some of the papers assessed as “fair” were describing selected findings from larger studies (Babler & Strickland, ; Hanna & Guthrie, , ; Mulvaney et al, ; Mulvaney et al, ), it is possible that the focus of reporting was on the findings, as methods had been described elsewhere. This highlights the issue that papers reporting on primary research rarely provide sufficient detail about study methods, resulting in quality assessment becoming an appraisal of the reporting quality (Hawker et al, ).…”