Parents of children diagnosed with type 1 diabetes suffer an income drop in the years following the diagnosis. The impact is more pronounced in mothers, especially mothers of children diagnosed in preschool years. These novel findings from a study led by researchers at Uppsala University, Sweden, have now been published in Diabetologia, the Journal of the European Association for the Study of Diabetes (EASD).

Type 1 diabetes is a chronic autoimmune disease that requires daily insulin treatment and continual blood sugar monitoring. In Sweden, more than a thousand children are diagnosed with type 1 diabetes yearly. The parents of these children shoulder the main responsibility for treatment and monitoring, at home as well as in school settings. Previous research has shown that parents of children with type 1 diabetes are at increased risk of stress-related symptoms and may need to reduce their working hours.

“In our study, we observed reduced parental work-related incomes in the years following the child’s type 1 diabetes diagnosis. The drop was larger in mothers than in fathers. Since mothers earned significantly less than fathers in absolute terms, even before the child fell ill, the relative drop in mothers was 6.6% the year following diagnosis compared to 1.5% in fathers. We further note the greatest impact on work-related incomes in mothers of children diagnosed at preschool age,” says Beatrice Kennedy, physician at the Endocrine and Diabetes unit at Uppsala University Hospital and Associate Professor of Medical Epidemiology at Uppsala University, who led the study.

Builds on data from 26,000 parents of children with type 1 diabetes

The research project was an interdisciplinary collaboration across medical departments at Uppsala University, including the Centre for Health Economics Research, with the University of Gothenburg. It builds on data from national population and health registers and the Swedish Child Diabetes Register (Swediabkids). The study includes the parents of more than 13,000 children diagnosed with type 1 diabetes in Sweden in 1993−2014, as well as more than half a million parents in the general population who have children not diagnosed with diabetes.

The researchers observed that the maternal pension-qualifying incomes (a composite outcome including work-related income and societal benefits) initially increased after the child’s diagnosis. This was attributable to mothers applying for the parental care allowance from the Swedish Social Insurance Agency. The parental care allowance was intended to compensate for disease-related loss of work-related income and contribute toward disease-specific costs.

Need for increased support to parents of children with chronic disease

When the research team investigated long-term effects in mothers, they found that the pension-qualifying incomes gradually decreased after eight years, and had not recovered by the end of follow-up − 17 years after the children were diagnosed.

“In this study, we have focused on the income effects in parents of children diagnosed with type 1 diabetes. However, parenting children with other chronic childhood-onset conditions may entail similar income consequences. Our findings indicate that there is room for improvement in the societal targeted support to mothers of children with chronic conditions, to ensure that the financial impact of caring for a child with health concerns is alleviated,” says Tove Fall, Professor of Molecular Epidemiology at Uppsala University, who initiated the project.