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Isolated thoughts and feelings and unsolved concerns: adolescents' and parents' perspectives on living with type 1
Pernille Castensøe-Seidenfaden1, Grete Teilmann1, Finn Kensing2
1Pediatric and Adolescent Department, Nordsjaellands Hospital, Hillerød, Denmark.
Aims And Objectives:
To explore and describe the experiences of adolescents and their parents living with type 1 diabetes, to identify their needs for support to improve adolescents' self-management skills in the transition from child- to adulthood.
Background:
Adolescents with type 1 diabetes often experience deteriorating glycaemic control and distress. Parents are important in adolescents' ability to self-manage type 1 diabetes, but they report anxiety and frustrations. A better understanding of the challenges adolescents and parents face, in relation to the daily self-management of type 1 diabetes, is important to improve clinical practice.
Design:
A qualitative explorative study using visual storytelling as part of individual interviews.
Methods:
A purposive sample of nine adolescents and their parents (seven mothers, six fathers) took photographs illustrating their experiences living with type 1 diabetes. Subsequently, participants were interviewed individually guided by participants' photographs and a semistructured interview guide. Interviews were analysed using thematic analysis.
Results:
Four major themes were consistent across adolescents and their parents: (1) striving for safety, (2) striving for normality, (3) striving for independence and (4) worrying about future. Although adolescents and parents had same concerns and challenges living with type 1 diabetes, they were experienced differently. Their thoughts and feelings mostly remained isolated and their concerns and challenges unsolved.
Conclusions:
The concerns and challenges adolescents and their parents face in the transition from child- to adulthood are still present despite new treatment modalities. Parents are fundamental in supporting the adolescents' self-management-work; however, the parties have unspoken concerns and challenges.
Relevance To Clinical Practice:
Healthcare providers should address the parties' challenges and concerns living with type 1 diabetes to diminish worries about future including fear of hypoglycaemia, the burden of type 1 diabetes and the feeling of being incompetent in diabetes self-management. It is important to focus on supporting both adolescents and their parents, and to provide a shared platform for communication.
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