ZusammenfassungMehr als die Hälfte der deutschen Bevölkerung hat Schwierigkeiten im Umgang mit Gesundheitsinformationen. Es ist eine wichtige Aufgabe der Versorgungsforschung zu untersuchen, wie sich die Professionen und Organisationen des Gesundheitssystems dieser Herausforderung stellen können. Das DNVF Memorandums Gesundheitskompetenz (Teil 1) nimmt Begriffsbestimmungen der individuellen und organisationalen Gesundheitskompetenz vor, präsentiert den nationalen und internationalen Forschungsstand und stellt ethische Aspekte der versorgungsbezogenen Gesundheitskompetenzforschung dar. Weiterhin wird die Relevanz der Gesundheitskompetenzforschung in verschiedenen Lebensphasen, bei unterschiedlichen Personengruppen sowie in verschiedenen Kontexten der Gesundheits- und Krankenversorgung erarbeitet. Vor diesem Hintergrund werden zentrale Forschungsgegenstände und zukünftige Forschungsdesiderata abgeleitet.

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.

<b>OBJECTIVE</b> <p>To investigate the occupational and financial consequences for parents following the onset of type 1 diabetes in their child. </p> <p><b>RESEARCH DESIGN AND METHODS</b> </p> <p>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. </p> <p><b>RESULTS</b></p> <p>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 (<i>P</i> < 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 (<i>P</i> = 0.75). Nearly half of the families (46.4%) reported moderate to severe financial losses. Compared to an earlier similar study in 2003, significant negative occupational consequences for mothers and financial burden on families remain unchanged in 2018 (<i>P</i> = 0.59 & 0.31, respectively).</p> <p><b>CONCLUSIONS</b></p> <p>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. </p>

Aims. To investigate (1) daily, emotional, and physical caregiving burdens in parents of children with type 1 diabetes, (2) the sociodemographic and clinical predictors of three burdens, and (3) support measures that parents wish to receive. Methods. The study was a multicenter cross-sectional survey conducted in nine German pediatric diabetes centers. A questionnaire assessing three types of burdens and wishes for support was distributed to parents with a child with type 1 diabetes visiting one of the pediatric centers for a routine check-up. Results. Data from 1,107 parents (83% mothers) were analyzed. Parents reported significantly higher emotional burdens compared to daily and physical burdens ( p < 0.0001 ). Mothers felt more burdened than fathers did. Parents of younger children reported higher daily and physical burdens compared to the parents of older children, and similarly, parents of technology users reported higher daily and physical burdens compared to the parents of nontechnology users. However, emotional burdens did not differ in both comparisons. Other demographic factors (i.e., parent’s age, migration status, and single-parent family status) predicted high levels of daily or physical burdens, but only HbA1c level and the parent’s gender (mother) predicted a high emotional burden. Independent of the level of burden, 78% of parents wanted additional diabetes training. Conclusion. Despite parents reporting high emotional burdens in connection with diabetes care, HbA1c and the gender of the reporting parent were the only risk factors. As the child gets older, parents’ daily and physical distress decrease but not the emotional burden. Diabetes training including regularly offered booster sessions as well as low-threshold interventions for mental health issues and practical self-care skills is recommended to provide continuous support for parents.