The AMBA Diabetes Study examines the stress, occupational and financial consequences of the child's metabolic disorder as well as the parents' need for support.

The findings form the basis for the development of adequate and needs-based information, advice and training services.

Parents of children with type 1 diabetes whose diabetes manifested itself before the age of 14 are surveyed.

1) Recording and analysis of the professional situation, health-related, physical, emotional and financial burdens and support needs of parents of children with type 1 diabetes for the year 2018. The data should be compared as a longitudinal section with corresponding data from 2004.

 

 

2) The results are to be published in scientific journals and general interest journals in order to present the particular challenges faced by parents of chronically ill children at a political level. Particular attention should be paid to the compatibility of family (with a chronically ill child) and work.

 

 

3) Based on the results, a follow-up project will develop offers for the practical support of parents in the dual task of "therapy and raising a child with type 1 diabetes". This could include web-based, interprofessional information, advice and training services (e.g. stress management, parenting skills, coping with anxiety, psychological stability), which could be made available via the Deutsche Diabetes Hilfe e.V. website

The study is an anonymous cross-sectional survey analogous to the first survey by Lange et al. 2004. The planned data from 2018 is compared with the data from 2004 as a longitudinal section.

The occupational and financial consequences are analyzed in a differentiated manner with regard to the current age of the child, the age at diagnosis, the form of therapy and the socio-economic status of the parents.

Psychological and social stress data are analyzed in the same way, as well as a structured analysis of the quantitative and qualitative care needs from the parents' perspective.

Based on this, support services and practical tools (also web-based) will be designed and implemented. These can be integrated into existing training programs (e.g. ModuS: www.patientenschulung-kompas.de) or offered as additional measures.

The primary outcome parameter focuses on the consequences of a child's diabetes manifestation with regard to the parents' professional situation and in particular the situation of the mothers.

 

The following outcome parameters are also recorded:

 

- the emotional and physical stress of all family members associated with the child's diabetes

 

stress on all family members

 

- the need for support in order to reconcile work and family life

 

- diagnosed mental illnesses of all family members after the diabetes diagnosis

 

- the financial burdens following the diabetes diagnosis

 

- the effects of the diabetes diagnosis on the parents' family planning.

The quality of the metabolic control of children with type 1 diabetes correlates with the cohesion of the family as well as the mental health and self-management skills of the parents. However, the care provided by parents, especially mothers, is rarely adequately recognized, even though they are under greater physical and psychological strain than parents without a chronically ill child.

Since the 2003 study sponsored by the Arbeitsgemeinschaft für pädiatrische Diabetologie e.V., which was also carried out at the MHH, there has been a lack of further representative and reliable national data on the occupational situation, diabetes-specific burdens and the specific support needs of affected families.

For this reason, current data on the parents' professional situation, the associated physical, psychological and financial burdens and the need for support are to be recorded.

This is because the daily treatment of a child with type 1 diabetes is a family project that must be managed by all members. Parents are faced with the task of reconciling qualified diabetes therapy for their child with age-appropriate education and support. In addition, these tasks must be coordinated with professional requirements. Therefore, the focus of long-term type 1 diabetes therapy should not only be on the affected child, but should also include the entire family system.

The results of the study should be widely publicized in order to present the particular challenges faced by these parents at a political level. A follow-up project will then develop support services and improve the everyday lives of children with diabetes and their families through targeted public relations work.

Parents of children with type 1 diabetes should be interviewed anonymously. The diabetes manifestation should have taken place before the child was 12 years old. The child/adolescent should still be undergoing long-term pediatric care and be younger than 14 years old.

 

The aim is to obtain a representative sample for each clinic, including parents with limited knowledge of German. These parents should be offered support in answering the questionnaire.

 

A structured questionnaire on employment and the burden on both parents due to diabetes therapy and raising the child in everyday life as well as a semi-structured questionnaire on care needs are used. All parents who fulfill the inclusion criteria and visit a diabetes outpatient clinic in the course of a quarter are invited to participate.

 

The following questionnaires and validated measurement instruments are used:

- CRF (sociodemographic and central diabetes data of the child)

- Sociodemographic data of the parents

- Questionnaire on the occupational consequences of the diabetes manifestation

- Semi-structured questionnaire on the parents' need for support

- Semi-structured questionnaire on the physical and emotional stress of all family members

family members and diagnosed mental illnesses

 

 

The planned data for 2018 will be compared with the data from 2004 as a longitudinal section. The occupational and financial consequences will be analyzed in a differentiated manner with regard to the age of the child, the age of diagnosis, the form of therapy and the socio-economic status of the parents.

The psychological and social stress data are analyzed in the same way, as well as a structured analysis of the quantitative and qualitative care needs from the parents' perspective.

Based on this, support services and practical tools (possibly web-based) will be designed and implemented.

Following the AMBADiabetes :

• the development of a qualified, low-threshold and multi-professional support system for parents of children with type 1 diabetes (web-based training programs/support and advice services for parents).

• Targeted public relations work and political activities together with Deutsche Diabetes Hilfe e. V. to improve the everyday lives of children with diabetes and their parents

 

Interested parties are cordially invited to discuss the topic, reflect on it, develop it further and, if necessary, network it with their own work.

We look forward to your re-registration.

 

Dr. Andrea Dehn-Hindenberg

Hannover Medical School

Medical Psychology

OE 5430, Carl-Neuberg-Straße 1, 30625 Hanover, Germany

Phone:+49 511 532-4433

Mail: dehn-hindenberg.andrea@mh-hannover.de

Web: https: //www.mhh.de/institute-zentren-forschungseinrichtungen/forschungs-und-lehreinheit-medizinische-psychologie