In children with type 1 diabetes (T1DM), parents are ultimately responsible for daily management of T1DM, which has a significant impact on family life. Daily management of T1DM is time-consuming and requires a change to many well-established family routines. Although technological advances have greatly enhanced the ability of parents to monitor and manage T1DM in youth,1
the responsibility of T1DM management can contribute to parental stress, distress, and diminished quality of life. Understanding the experience of parenting a child with T1DM can provide insight into the challenges and needs of parents, thus informing the development of parental and/or family interventions. Considerable research has been undertaken to examine aspects of the parenting experience; however, there is a need to synthesize this literature to inform future research and clinical work.
Caring for a child with T1DM has been described as an overwhelming experience, requiring constant vigilance.2
Parents must come to terms with having a child with a life-threatening illness and carrying out a labor-intensive and complicated daily regimen.3
Parents live with constant worry about hypoglycemia or hyperglycemia, heightened feelings of responsibility for their child’s health, and the desire to promote optimal growth and development.4
At different developmental phases, new issues arise that require a complete reevaluation of previously established and effective management strategies.5
The ongoing stress and worry manifest in elevated rates of parents’ perception of stress and increased risk for depression and anxiety.
There is considerable research on the prevalence of parental psychological distress and the impact of such distress on child and family outcomes. Although the majority of parents of children with T1DM adjust well, approximately 20% to 30% of parents report clinically significant distress, which has been defined as stress (life stress or parenting stress) and symptoms of anxiety, depression, and/or posttraumatic stress.6–8
Parental psychological distress at the time of diagnosis has been found to predict later parental distress.9
In addition, parental psychological distress has health implications for the parent, the child with T1DM, and the overall functioning of the family.10
In parents of children with T1DM, psychological distress has been shown to affect family communication,11
increase family conflict,12
decrease the ability to parent effectively,13
negatively affect child psychological adjustment,9
and contribute to poor parental mental and physical health.14
Greater understanding of the relationship of parental psychological responses to having a child with T1DM is needed to guide clinical practice and future research. Thus, the purpose of this systematic mixed-studies review is to synthesize the research on the parental experience of having a child with T1DM, focusing on parental psychological adjustment. The aims are to describe the prevalence of psychological distress in parents of children with T1DM, the relationship between parental psychological distress and health outcomes, and the parental experience of having a child with T1DM. Clinical and research implications will also be presented.