[DNVF Memorandum Health Literacy (Part 1) - Background, Relevance, Research Topics and Questions in Health Services Research]. / DNVF Memorandum Gesundheitskompetenz (Teil 1) ­ Hintergrund, Relevanz, Gegenstand und Fragestellungen in der Versorgungsforschung.

More than half of the German population has difficulties in dealing with health information. It is an important task of health services research to examine how healthcare professionals and health care organizations can meet this challenge. The DNVF Memorandum Health Literacy (Part 1) defines the terms of individual and organizational health literacy, presents the national and international state of research and ethical aspects of health literacy research in health care settings. The relevance of health literacy research is worked out in different phases of life, for different target groups and in different healthcare contexts. Central research topics and future research desiderata are derived.

[DNVF Memorandum Health Literacy (Part 1) - Background, Relevance, Research Topics and Questions in Health Services Research: Short Version]. / DNVF Memorandum Gesundheitskompetenz (Teil 1) ­ Hintergrund, Relevanz, Gegenstand und Fragestellungen in der Versorgungsforschung: Kurzfassung.

More than half of the German population has difficulties in dealing with health information. It is an important task of health services research to examine how healthcare professionals and health care organizations can meet this challenge. This short version of the DNVF Memorandum Health Literacy (Part 1) defines the terms of individual and organizational health literacy, presents the national and international state of research and ethical aspects of health literacy research in health care settings. Central research topics and future research desiderata are derived.

[Young People with Type 1 Diabetes: Prevalence of Disturbed Eating Behaviour and Psychosocial Care]. / Gestörtes Essverhalten und psychosoziale Versorgungssituation junger Menschen mit Typ 1 Diabetes.

INTRODUCTION: Disturbed eating behaviour or clinically relevant eating disorders associated with type 1 diabetes have serious consequences for the metabolism and long-term health prognosis of those affected. Early diagnosis and qualified therapeutic interventions may help to prevent microvascular complications. In this study, the prevalence of eating disorders and the status of psychosocial care are assessed for a group of young people with type 1 diabetes, participating in a 4 days diabetes camp. MATERIAL AND METHODS: During a diabetes camp for young people (16-29 years) in Germany, the participants completed a questionnaire on their current diabetes therapy, their diabetes-specific distress (PAID-5), and their psychosocial outpatient care. Symptoms of disturbed eating were assessed by a diabetes-specific screening questionnaire, the Diabetes Eating Problem Survey-Revised (DEPS-R). RESULTS: Overall 308 young people with type 1 diabetes (age 21.4±3.4 years, 73% female, diabetes duration 10.2±5.9 years, 74% in adult diabetes out-patient care) answered the questionnaire. In 28.2% of respondents, the cut-off of DEPS-R was exceeded (17% of men, 32% of women). Only 7% of the participants with symptoms of disturbed eating behaviour received appropriate psychological care. Multiple regress analysis indicates that HbA1c, BMI, diabetes-specific distress, age, diabetes duration, and sex account for the level of disturbed eating behaviour. DISCUSSION: Among the participants of a diabetes camp for young people, more than a quarter presented symptoms of disturbed eating behaviour. Overall, young women were affected more frequently; further risk factors were higher BMI, elevated HbA1c and diabetes-distress. Only a very small proportion of young adults with type 1 diabetes and disturbed eating behaviour received psychological support. CONCLUSION: Diabetes-specific screening instruments and/or specific screening questions should be used in outpatient routine care for young adults in a standardized manner, especially among young women, and the results should be discussed with the patients to initiate further treatment.

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

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.

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

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.