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Isolated thoughts and feelings and unsolved concerns. Adolescents' and parents' perspectives on living with type 1 diabetes: a qualitative study using visual storytelling

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AIMS AND OBJECTIVES: To explore and describe the experiences of adolescents and their parents living with type 1 diabetes (T1DM), to identify their needs for support to improve adolescents' self-management skills in the transition from child- to adulthood.

BACKGROUND: Adolescents with T1DM often experience deteriorating glycemic control and distress. Parents are important in adolescents' ability to self-manage T1DM, but they report anxiety and frustrations. A better understanding of the challenges adolescents and parents face, in relation to the daily self-management of T1DM, 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 photos illustrating their experiences living with T1DM. Subsequently participants were interviewed individually guided by participants' photos and a semi-structured interview guide. Interviews were analyzed 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. Despite adolescents and parents had same concerns and challenges living with T1DM, 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: Health care providers should address the parties' challenges and concerns living with T1DM to diminish worries about future including fear of hypoglycemia, the burden of T1DM 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. This article is protected by copyright. All rights reserved.

Original languageEnglish
JournalJournal of Clinical Nursing
Issue number19-20
Pages (from-to)3018-3030
Publication statusPublished - 2017

ID: 52081899