The lived experience of parents caring for a child with Type 1 diabetes : a thesis presented in partial fulfilment of the requirements for the degree of Doctor of Clinical Psychology at Massey University, Palmerston North, New Zealand

Abstract

Type 1 diabetes is the most common chronic metabolic condition seen in children and adolescents. Parents of children with Type 1 diabetes are responsible for carrying out a demanding treatment regimen on a daily basis, to prevent short- and long-term complications related to blood-sugar control. Parents can experience significant stress related to this role, but there is limited in-depth qualitative research on the parental experiences of caring for a child with Type 1 diabetes. Understanding the experiences of parents can contribute to better parental and child adjustment to the illness. The present study explored parental experiences by using Interpretative Phenomenological Analysis (IPA) of in-depth semi-structured interviews with 17 parents of children with Type 1 diabetes. In this study, parents experienced a profound biographical disruption from the moment their child was diagnosed, which undermined their confidence in the ability to care for their child. Parents likened this to the experience of having a new baby. They used repair structures to reconstruct parental identity based on the idea of normality. These involved normality through typical childhood experiences, embracing a new normality, and preserving family normality. Looking after a child with diabetes was also dominated by the ‘constant-ness’ of the disease, driven by a need for constant vigilance and better management in the context of an unpredictable body. Parents responded to some of the embodied experiences of the child through their own embodied acts of caregiving. They also made comparisons between diabetes and other conditions as a way of coping with the embodied unpredictability of childhood diabetes. Parents’ accounts of resilience in the context of Type 1 diabetes reflected a mainstream understanding of resilience as an individual attribute or capability. However, from their talk of navigating through daily challenges, an alternative conceptualisation of resilience for these parents is presented as ‘doing’ resilience. ‘Doing’ resilience also involved a separation of actions and emotions of the parents, which supported the daily ‘doing’ of diabetes. These findings highlight the psychosocial implications of parenting a child with Type 1 diabetes. They indicate a need to acknowledge the profound impact on the parents’ lives and the ways that they attempt to cope with the demanding caregiving responsibilities. Understanding these lived experiences can enable health professionals to provide better support in making sense of and coping with the changes in parents’ lives.