Understanding parents’ experiences with children with type 1 diabetes: A qualitative inquiry

Abstract

Parenting is often described as a stress-inducing experience, which can be further complicated or made more stressful and anxiety-inducing when parenting children with chronic conditions such as type 1 diabetes (T1D). The incidence of T1D among children has risen and continues to rise globally, resulting in a need to understand the experiences of parenting children with T1D. The purpose of this qualitative inquiry was to explore the lived experiences, and the meaning ascribed to those experiences, of being a parent of a child with T1D. This qualitative study was conducted through an interpretivist paradigm and includes the experiences of 29 parents (19 mothers and 10 fathers) of 24 children (aged 6 to 15 years) with T1D. Parents, and parent dyads, completed demographic questionnaires and written prompts, and participated in focus group interviews. Three themes were developed from the data, namely, (a) the costs of T1D, (b) the ultimate helicopter mom, and (c) dealing with “being different”. Generally, the participants reported on the direct (e.g., financial and time) and indirect (e.g., family planning) costs associated with parenting children with T1D, their role as a primary provider and anxieties with relinquishing control and dealing with the stigma surrounding a diabetes diagnosis. Unique findings from this study included the impact a T1D diagnosis had on future family planning as parents navigated the fear and uncertainty of having additional children with T1D, as well as the internal conflict parents had with entrusting others to care for their child, especially if they deemed them to be unqualified or unnecessarily stigmatizing or ostracizing their child.