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

TY - JOUR

T1 - Isolated thoughts and feelings and unsolved concerns

T2 - adolescents' and parents' perspectives on living with type 1 diabetes - a qualitative study using visual storytelling

AU - Carstensøe-Seidenfaden, Pernille

AU - Teilmann, Grete Katrine

AU - Kensing, Finn

AU - Hommel, Eva

AU - Olsen, Birthe Susanne

AU - Husted, Gitte Reventlov

N1 - © 2016 John Wiley & Sons Ltd.

PY - 2017/10

Y1 - 2017/10

N2 - 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.

AB - 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.

U2 - 10.1111/jocn.13649

DO - 10.1111/jocn.13649

M3 - Journal article

C2 - 27865017

SN - 0962-1067

VL - 26

SP - 3018

EP - 3030

JO - Journal of Clinical Nursing

JF - Journal of Clinical Nursing

IS - 19-20

ER -