Long-term effects of caring for a child with type 1 diabetes on parental economic and psychiatric health outcomes

About 7,000 families in Sweden have one or more children with type 1 diabetes.

Affected children require multiple daily injections of insulin for survival and are always at risk for severe acute events if they have either too little or too much insulin. They are also at increased risk of long-term complications.

Parents have the key role in the treatment, including not only insulin dosages but also closely monitoring blood glucose levels, food intake, and physical activity.

Previous small qualitative studies have indicated that parents of children with type 1 diabetes develop stress-related symptoms, most notably in the mothers.

Studies of parents to children with cancer show long-term effects on income trajectories, even when the child survive their cancer. No previous study has examined the long-term consequences of caring for a child with type 1 diabetes.

Sweden is an excellent setting for these types of studies, given the high incidence of type 1 diabetes and the well-kept national and quality register.We will undertake record linkage of national population and health registers to create a database of Swedish parents including about 26 000 parents with a child with diabetes.

We will use this database to investigate how caring for a child with type 1 diabetes affects 1) parental long-term income trajectory, career and marital status and 2) parental psychiatric health. The control group will consist of parents without children with diabetes. We will also employ a sibling design to address unmeasured confounding.

We will investigate how parental educational level, birth region, sex and child co-morbidities and age at diagnosis modify the effect of type 1 diabetes on parental outcomes We will investigate potential differences over the time period 1987-2020.

The results of our study could be used for identifying vulnerable groups deserving targeted interventions and may serve as a basis for policy-making.