Psychosocial care, children and young people, rare diseases, families

Prof Dr Silke Wiegand-Grefe, Department of Child and Adolescent Psychiatry, Psychotherapy and Psychosomatics, University Medical Center Hamburg Eppendorf (UKE), is the consortium leader.

The Department of Child and Adolescent Psychiatry and Psychotherapy at Ulm University Hospital is a consortium partner and offers a new form of care WEP-CARE (web-based parenting programme: help in coping with illness for parents of children with rare chronic diseases) as part of the project.

The CARE-FAM-NET project was jointly conceived and applied for by Prof. Dr Silke Wiegand-Grefe and Prof. Dr Lutz Goldbeck. Since the death of Prof. Dr Lutz Goldbeck, Prof. Dr Jörg Fegert and Prof. Dr Miriam Rassenhofer have taken over the management of the sub-project.

01.10. 2018-30.09.2022

It is estimated that around two million children and adolescents in Germany live with SE. Disease management usually requires a high level of support and care from parents and siblings and places high demands on the family, which is often burdened with anxiety, uncertainty and worry about the sick child. According to studies, between 30% and 40% of mothers are in the clinical range of anxiety and depression. The central objectives of CARE-FAM-NET are the implementation, monitoring evaluation and transfer of two psychosocial NVFs (CARE-FAM and WEP-CARE) for children with SE, their siblings and parents at 20 locations. Existing care structures are utilised, networked with CARE-FAM-NET and expanded to include qualified psychosocial care. If there is evidence of medical and health economic success, the NVFs will be incorporated into standard care.

The CARE-FAM-NET project was divided into 2 overlapping sub-projects:

Sub-project 1: Implementation, firstly, of systematic screening for early detection of psychosocial support needs for all families and, secondly, of both NVFs (CARE-FAM, WEP-CARE) at 20 locations. It is planned to include N=1000 families with at least one child aged 0 to 21 with SE in the study.

Sub-project 2: Accompanying evaluation with cost-benefit analyses, external quality assurance and optimisation of access routes

Both NVFs will be jointly evaluated in terms of health economics and medicine in a multicentre randomised controlled trial with a two-factor 4-group design (CARE-FAM, WEP-CARE, both interventions, TAU routine care). The primary objective criterion is the mental health of the children, siblings and parents. There are 4 measurement points (every 6 months).

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Tutus, D., Niemitz, M., Fegert, J. M., & Rassenhofer, M. (2021). E-mental health options for parents of a child with a rare chronic disease: Interventional approaches to reduction of psychological stress]. Monatsschr Kinderheilkd.

Innovation Committee at the Federal Joint Committee (GB-A)