Continuous diabetes education for children, adolescents and their parents are widely accepted as an integral part of every type 1 diabetes therapy. Especially in paediatric diabetes care age-appropriate, demand-oriented and individualized practical information and skills training are mandatory for achieving good metabolic control and psychosocial well-being. A paediatric multidisciplinary diabetes team experienced in an intensified insulin therapy with a differential substitution of prandial and basal insulin needs (MDI or CSII) and in child psychology is required to initiate and maintain lifelong diabetes self-management. In Germany an education programme for children aged 6-12 years and another programme for adolescents and young adults have previously been evaluated in multicenter studies. Programmes were considered with respect to applicability, acceptance by target groups and efficacy (knowledge, competence, quality of life and glycaemic control). Furthermore, a programme specifically designed for parents of children affected was evaluated. Contents, modular structures, developmental psychological background and didactic concepts of all above mentioned programmes are presented in detail. Apart from teaching insulin therapy according to current guidelines special emphasis is laid on translating this knowledge into everyday self-management behaviour. In addition, emotional coping with the chronic disease and its psychosocial consequences is supported. In the context of the Disease-Management-Program for Type 1 Diabetes in Germany these programmes for young people were certified and reimbursed nationwide by health insurances.

Introduction: ISPAD guidelines recommend age appropriate diabetes education concepts for young patients and their families as well as tools for nutritional management, psychosocial assessment, and psychological advice but their implementation in Europe is presently unknown. Methods: On the basis of a structured survey among the European SWEET members information on established tools and programs in national languages were analyzed using an extensive literature and desk search. These were differentiated according to five age-groups and five target groups (young people with diabetes, parents, and other close relations, carers in school and nursery, and healthcare professionals). Results: Responses and original tools were received from 11 SWEET countries reflecting the European status in 2011. More or less structured information for parents, close relations, and carers in school or nursery are available in all 11 participating countries. However, only two countries followed the recommendations of having published a structured, curriculum lead, and evaluated program for different age-groups and carers. One of these was evaluated nationwide and funded by the respective National Health Care System after accreditation. In addition a huge variety of creative tools, e.g., booklets, leaflets, games, videos, and material for educating children of different age-groups and their parents are available -but most of them are not linked to a structured education program. Conclusions: Harmonizing and integrating these materials into quality assured structured holistic national education programs will be an important future task for the ongoing SWEET project. A comprehensive European diabetes educational toolbox is aimed to be published and continuously updated on the SWEET website.

The Diabetes Eating Problem Survey-Revised delivered more specific information than generic screening instruments and identified more young people with eating disorders than did clinician report, especially regarding the detection of boys at risk. The results of this study support the utility of the German version of the Diabetes Eating Problem Survey-Revised to identify eating disorders in young people with Type 1 diabetes at an early stage. (German Clinical Trials Registry no.: DRKS00004699).

BackgroundTo assess initial efficacy and feasibility of a structured behavioural group training (DELFIN) for parents of children with diabetes type 1, in order to reduce parenting stress and to improve parenting skills.MethodsA randomized controlled study was conducted between July 2008 and September 2010, at a children’s hospital in Hannover with parents of children with type 1 diabetes (2–10 yrs) (intervention group n = 37; control group n = 28). Parenting skills, parents’ psychological burden, children’s behavioural difficulties and quality of metabolic control were assessed before, 3 months after and 12 months after participating in the training program.ResultsIn the intervention group parenting behaviour in conflict situations improved significantly after 3 months (Z = −3.28; p ≤ 0.001). It remained stable over 12 months (Z = −2.94; p ≤ 0.01). Depression and anxiety scores of parents decreased (Z = −1.93; p ≤ .05; Z = −2.02; p ≤ .05). Even though the outcome in the intervention group was more positive, the differences between both study arms failed to reach statistical significance. Unexpectedly parenting behaviour in the control group improved also (Z = −2.45; p ≤ .05). Anxiety as well as stress scores decreased in this group (Z = −2.02; p ≤ .05 and Z = −2.11; p ≤ .05). In both groups the initial metabolic control was good and without significant differences (A1c 7.2±0.8% vs. 7.1±0.4%; p > 0.5). It remained stable in the DELFIN group (A1c 7.1±0.8%; p > 0.5), but it increased slightly in controls (A1c 7.3±0.5%; Z = −2.79; p = .005).ConclusionsThis study has brought first evidence for the efficacy and feasibility of the program. A multicentre study with a larger sample is necessary to confirm these first results.

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.

Zusammenfassung. In dem vorliegenden Überblicksartikel werden Programme zur universellen, selektiven und indizierten Prävention psychischer Störungen bei Vor- und Grundschulkindern beschrieben und hinsichtlich ihrer Effektivität bewertet. Wenn man strenge Kriterien zur Beurteilung der empirischen Effizienz anlegt, dann gibt es international sieben universelle und 13 selektiv/indizierte wahrscheinlich wirksame Präventionsprogramme, die psychopathologischen Symptomen wie Aggression, Depression oder Angst bei Kindern vorbeugen können. In Deutschland gibt es nur wenige solche Ansätze, von denen sich die meisten noch im Evaluationsprozess befinden. Nur drei universelle Programme können als vermutlich effektiv eingestuft werden. Auf der anderen Seite werden eine Vielzahl von Programmen angeboten und verbreitet, die keine empirische Absicherung erfahren haben oder sich als nicht wirksam erwiesen haben. Es ist daher dringend notwendig, vorhandene Ansätze einer Wirksamkeitsprüfung zu unterziehen und die Verbreitung nicht-wirksamer Programme einzudämmen. Weiterhin erscheint es ratsam, in anderen Ländern bereits empirisch untersuchte Präventionsprogramme für den deutschsprachigen Raum zu adaptieren.