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WEP-CARE
Web-based parenting programme: Help for parents of children with rare chronic diseases to cope with their illnesses
Keywords
Internet-based writing therapy, parents, coping with illness, children with rare chronic diseases
Project management
The WEP-CARE project was applied for, designed and managed by Prof Dr Lutz Goldbeck. Since his death, Prof Dr Fegert has taken over the provisional management of the project.
Co-operation partner
Prof Dr Christine Knaevelsrud, Freie Universität Berlin, Department of Clinical Psychology and Psychotherapy;
Dipl. Psych. Christa Weiss, Dipl. Psych. Christine Lehmann, Charité Campus Virchow Klinikum, Cystic Fibrosis Centre / Christiane Herzog Centre Berlin;
Dr Christine Mundlos, ACHSE c / o DRK Kliniken Berlin Mitte
Project duration
01.10.2015 - 30.04.2019
Project website
Project description
Parents of a child affected by a rare chronic illness (SCE) often show psychological stress, such as anxious and depressive symptoms. Access to specific psychological or psychotherapeutic support in coping with the disease is difficult for those affected. Internet-based psychotherapy has already proven successful for mental disorders such as anxiety and depression and enables low-threshold psychological support for affected parents that is flexible in terms of time and place. The aim of the project is therefore to evaluate a cognitive-behavioural intervention programme developed in a preliminary study, which is carried out in the form of internet-based writing therapy. The programme is to be implemented in addition to the existing standard care and, if the evaluation is positive, established on a long-term basis.
The evaluation will be carried out with a total of 70 participating parents in a randomised waiting control group design. The intervention will be carried out by trained and supervised professionals on the internet platform ulmer-onlineklinik.de. Standardised, psychometrically robust questionnaires are used to record psychological stress, well-being and quality of life. Mentally stressed parents of 0-25 year old patients with a rare disease are offered participation in the study in addition to the usual standard care. The intervention programme is based on a disorder-specific treatment manual with a cognitive-behavioural approach. Within a period of 12-14 weeks, the participants complete twelve therapy sessions of approx. 45 minutes each.
Publications and materials produced
Fidika, A., Herle, M., Lehmann, C., Weiss, C., Knaevelsrud, C., & Goldbeck, L. (2015). A web-based psychological support programme for caregivers of children with cystic fibrosis: a pilot study. Health and Quality of Life Outcomes, 13(1), 11.
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.
Tutus, D., Plener, P. L., & Niemitz, M. (2020). Quality criteria of internet-based cognitive-behavioural interventions for children and adolescents and their parents - A systematic review. Journal of Child and Adolescent Psychiatry and Psychotherapy, 48, 57-75.
Tutus, D., Plener, P. L., & Niemitz, M. (2018). Ulmer Onlineklinik - a platform for internet-based psychodiagnostics and online psychological intervention programmes. Psychotherapy in dialogue, 19(04), 71- 75.
Contact address
Supported by:
Robert Bosch Stiftung GmbH
