Parents' Experiences Of Having A Child Diagnosed With Type 1 Diabetes: Initial Impact And Change Over Time

Aims Treatment of type 1 diabetes in adolescence requires input from parents to support the completion of complex multi-component self-management tasks in order to achieve optimal glycaemic control and maintain adolescent health and well-being. This study explored parents’ experiences of learning about their child’s type 1 diabetes including their initial reactions to the diagnosis and changes in their perspectives over time, in addition to parents’ views of negotiating self-management responsibilities with their adolescent children. Methods Qualitative interviews were conducted with 32 parents (24 mothers, 8 fathers) of adolescents, aged 11 to 17 years, living with type 1 diabetes to explore parents’ experiences of learning about their child’s type 1 diabetes and negotiating self-management responsibilities with them. Parents were recruited through two national child and adolescent diabetes and endocrine clinics and online advertisement through a national diabetes advocacy organisation. Interviews were transcribed verbatim and thematically analysed. Findings Parents discussed their initial reactions to their child’s type 1 diabetes diagnosis (e.g. upset, shock, worry). Parents identified the sources of support which they relied on following their child’s diagnosis, including ongoing support from the diabetes team at their child’s hospital and other supports in their communities (e.g. family, school, and other parents of children living with type 1 diabetes). Parents described the process of learning how to manage type 1 diabetes with many relying on the diabetes team as a source of information. Most parents noted that how they felt about their child’s type 1 diabetes had changed over time; however many stated that being involved in their child’s self-management of type 1 diabetes continued to have an impact of their own well-being. Conclusions It is important that parents are supported as they deal with their own emotions in relation to their child’s type 1 diabetes diagnosis. Understanding the impact of a type 1 diabetes diagnosis on parents may enable healthcare professionals to provide more effective support to parents as they come to terms with their child’s diagnosis and learn to manage type 1 diabetes. Ensuring that parents are supported as their role in their child’s type 1 diabetes management changes over time may subsequently impact the negotiation of self-management between parents and adolescents as adolescents take on increasing levels of responsibility.