The Parental Experience of Caring for a Child with Type 1 Diabetes

Abstract

Type 1 diabetes is the most common chronic metabolic condition seen in children and adolescents. Parents play an instrumental role in caring for a child with Type 1 diabetes. The present study aimed to explore experiences of parents as they look after their child who has a body that presents unique challenges to both maintaining health and meeting expectations for a conventional childhood. This qualitative study involved in-depth semi-structured interviews with 17 parents of children with Type 1 diabetes. Interpretative Phenomenological Analysis (IPA) was used to analyse parents’ accounts to elicit salient themes. Parents described how they responded to some of the embodied experiences of their child, through their own embodied acts of caregiving. Looking after a child with diabetes was a demanding experience, where the illness experience was dominated by the ‘constant-ness’ of the disease. This experience was heavily driven by a need for constant vigilance and careful management in the context of an unpredictable body. Parents also made comparisons of their child with a diabetic body with other types of health conditions and situations, to arrive at two different positions; one where they saw diabetes as a fortunate diagnosis compared to other childhood conditions, and the alternative position that diabetes was more challenging to live with than other illnesses. These comparisons provide a way of coping with the embodied unpredictability of childhood diabetes. Rather than viewing these comparisons as adaptive or maladaptive, health professionals may be able to understand the competing and contradictory accounts that parents provide as they attempt to make sense of the experience of parenting a child with a chronic illness.