Long-term Occupational Consequences for Families of Children With Type 1 Diabetes: The Mothers Take the Burden

Abstract

OBJECTIVE To investigate the occupational and financial consequences for parents following the onset of type 1 diabetes in their child. RESEARCH DESIGN AND METHODS A questionnaire assessing occupational and financial situations before and in the first year after the onset of diabetes was distributed to all families with a child ≤14 years of age at diagnosis with a diabetes duration of at least 12 months in nine German pediatric diabetes centers. RESULTS Data of 1,144 children (mean age at diagnosis 6.7 [3.6] years; 46.5% female) and their families were obtained. Mothers’ occupational status reflected in paid working hours was significantly reduced in the first year after their child's diabetes diagnosis (P < 0.001). Overall, 15.1% of mothers stopped working, and 11.5% reduced working hours. Mothers of preschool children were particularly affected. Fathers’ working status hardly changed (P = 0.75). Nearly half of the families (46.4%) reported moderate to severe financial losses. Compared with an earlier similar study in 2003, significant negative occupational consequences for mothers and financial burden on families remained unchanged in 2018 (P = 0.59 and 0.31, respectively). CONCLUSIONS Mothers of young children with newly diagnosed diabetes experienced negative consequences in their occupational situation. This inequality for mothers can have long-term negative consequences for their mental health and future economic situation. There is an urgent need for action to reduce the burden on families and to provide professional, social, and regulatory support, especially for mothers of young children with diabetes.

Understanding Daily, Emotional, and Physical Burdens and Needs of Parents Caring for Children with Type 1 Diabetes

“…Examining the associations of burdens with demographic and clinical features revealed that mothers reported significantly higher burdens than fathers. This finding is comparable to the previous study reporting mothers are more likely than fathers to experience occupational strains due to the diagnosis of T1D in their child [ 21 ]. Our finding is also congruent with the report from a Norwegian population-based survey examining an age-comparable sample as in our study.…”

“…The caregiving responsibilities affect women more severely than men. As evidenced in a previous study, mothers have shown commendable sacrifice to accept additional responsibility by compromising their current and future financial and occupational situations [ 21 ]. Supporting these families will not only provide relief for these mothers but also reduce social inequality among members of our community.…”

“…This study was part of a larger cross-sectional research project, the AMBA study (Alltagsbelastungen der Mütter und Väter von Kindern mit Typ 1 Diabetes: Auswirkungen auf Berufstätigkeit und Bedarf an Unterstützung im Alltag—translation: Everyday stress of mothers and fathers of children with type 1 diabetes: effects on employment and need for support in everyday life), where the impact of having a child with diabetes in the family was examined [ 21 ]. In our sampling method, study sites were selected based on the center's qualification, geographical location, and the size of the cities.…”

“…For the current study, demographic and clinical characteristics, assessments on self-reported parental burdens, and diabetes support items were used. The demographic and clinical characteristic portion of the questionnaire has been already published [ 21 ]. The demographic variables included participating parents' characteristics (gender, education, age, number of children, living arrangement, and immigrant status) and the child's age, gender, and clinical characteristics (HbA1c, disease duration, and diabetes technology use).…”

“…Despite both parents reporting distress associated with managing T1D in their child, higher rates of distress were reported by mothers [ 19 , 20 ]. Considering mothers are often the primary caregivers for the child with T1D [ 21 ], providing necessary and appropriate support is contingent upon understanding the types and extent of burdens that mothers report.…”