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

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  • Mathilde Overgaard
  • Louise Lundby‐Christensen
  • Dan Grabowski

Abstract

Aim To explore daily life with type 1 diabetes in families with an adolescent with type 1 diabetes. Background Management of adolescent type 1 diabetes is carried out in the context of everyday life, thus involving and affecting the entire family. Type 1 diabetes causes disruption of family life, but the specific experiences and challenges of adolescents with type 1 diabetes, siblings and parents are not well‐explored. Specifically, research is lacking on the siblings’ experience of adolescents with type 1 diabetes. Design A qualitative design using participatory workshops. Methods A sample of 21 families comprising adolescents with type 1 diabetes (aged 8–18) (N = 20), their parents (N = 29) and siblings (N = 10) participated in four workshops exploring everyday life in families with adolescent diabetes from the perspective of all family members. Data were analysed using systematic text condensation. The COREQ checklist was used preparing the manuscript. Results Family life with type 1 diabetes was characterised by three overarching themes: (a) the perpetual challenges and disruptive nature of life with diabetes, (b) different ways of worrying about diabetes and (c) diabetes autonomy and emancipation from parents. All family members’ lives were marked by these aspects, however in different ways and to varying degrees. Conclusions Our findings emphasise that type 1 diabetes is indeed a family illness affecting all family members. The study provides insight into the unique experiences of adolescents with diabetes, their parents and siblings, all of whom encounter diabetes‐related challenges in their daily lives. Relevance to clinical practice The findings call for the inclusion of all family members of adolescents with type 1 diabetes in both research and healthcare practice. Family‐oriented approaches targeting adolescents with diabetes as well as their parents and siblings will enable provision of nursing care that can meet the needs of the entire family.

Suggested Citation

  • Mathilde Overgaard & Louise Lundby‐Christensen & Dan Grabowski, 2020. "Disruption, worries and autonomy in the everyday lives of adolescents with type 1 diabetes and their family members: A qualitative study of intrafamilial challenges," Journal of Clinical Nursing, John Wiley & Sons, vol. 29(23-24), pages 4633-4644, December.
    • Handle: RePEc:wly:jocnur:v:29:y:2020:i:23-24:p:4633-4644
    DOI: 10.1111/jocn.15500
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    References listed on IDEAS

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    1. Donna Freeborn & Tina Dyches & Susanne O Roper & Barbara Mandleco, 2013. "Identifying challenges of living with type 1 diabetes: child and youth perspectives," Journal of Clinical Nursing, John Wiley & Sons, vol. 22(13-14), pages 1890-1898, July.
    2. Dan Grabowski & Maria Beatriz Rodriguez Reino & Tue Helms Andersen, 2019. "Mutual Involvement in Families Living with Type 2 Diabetes: Using the Family Toolbox to Address Challenges Related to Knowledge, Communication, Support, Role Confusion, Everyday Practices and Mutual W," Social Sciences, MDPI, vol. 8(9), pages 1-14, September.
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