Web-Based Parental Program: Helping Parents of Children With Rare Chronic Diseases to Cope With the Disease



Internet-Based Writing Therapy, Parents, Coping With Illnesses, Children With Rare Chronic Diseases

Project Management

  • Profilbild von Prof. Dr. med. Jörg M. Fegert

    Prof. Dr. med. Jörg M. Fegert

    Ärztlicher Direktor der Klinik für Kinder- und Jugendpsychiatrie/Psychotherapie

Cooperation Partners

  • Prof. Dr. Christine Knaevelsrud, Freie Universität Berlin, Division of Clinical Psychology and Psychotherapy
  • Dipl. Psych. Christa Weiss, Dipl. Psych. Christine Lehmann, The Charité Out-Patient Clinic Cystic Fibrosis – Christiane Herzog-Zentrum Berlin;
  • Dr. med. Christine Mundlos, ACHSE c / o DRK (German Red Cross) Kliniken Berlin Mitte

Project Term

01.10.2015 – 30.04.2019

Background & Aim of the Project

Parents of children suffering from a rare chronic disease often show psychological stress, such as anxious and depressive symptoms. For these parents it is difficult to get access to specific psychological or psychotherapeutic support in coping with the disease. Internet-based psychotherapy has already proven itself in cases of mental disorders like anxiety and depression and provides parents with low-threshold and in terms of time and place flexible psychological support. The aim of the project is therefore the evaluation of a cognitive-behavioral intervention program developed in a preliminary study which is carried out in form of an internet-based writing therapy. The program is to be implemented in addition to the existing standard care and, if evaluated positively, will be established sustainably.

Description of the Project

The evaluation is conducted with a total of 70 participating parents in a randomized waiting list control group design. The intervention is carried out by trained and supervized specialists on the internet platform ulmer-onlineklinik.de. By means of standardized psychometrically robust questionnaires, psychological stress, state of mind and quality of life are assessed. Parents of 0-25-year-old patients with a rare disease suffering from mental stress will be offered participation in the study in addition to the usual standard care. The intervention program is based on a disorder-specific treatment manual with a cognitive-behavioral approach. During a period of 12-14 weeks the participants work on twelve therapy units of approx. 45 minutes each.


Publications and created materials

Fidika, A., Herle, M., Lehmann, C., Weiss, C., Knaevelsrud, C., & Goldbeck, L. (2015). A web-based psychological support program for caregivers of children with cystic fibrosis: a pilot study. Health and Quality of Life Outcomes, 13(1), 11. (https://doi.org/10.1186/s12955-015-0211-y)

Tutus, D., Niemitz, M., Fegert, J. M., & Rassenhofer, M. (2021). E-Mental-Health-Angebote für Eltern eines Kindes mit einer seltenen chronischen Erkrankung: Interventionelle Ansätze zur Reduktion der psychischen Belastung [E-mental health options for parents of a child with a rare chronic disease: Interventional approaches to reduction of psychological stress]. Monatsschr Kinderheilkd. https://doi.org/10.1007/s00112-021-01180-2 

Tutus, D., Plener, P. L., & Niemitz, M. (2020). Qualitätskriterien internetbasierter kognitiv-behavioraler Interventionen für Kinder und Jugendliche sowie deren Eltern – Ein systematisches Review. Zeitschrift für Kinder- und Jugendpsychiatrie und Psychotherapie, 48, 57–75. https://doi.org/10.1024/1422- 4917/a000640  

Tutus, D., Plener, P. L., & Niemitz, M. (2018). Ulmer Onlineklinik – eine Plattform für internetbasierte Psychodiagnostik und psychologische Online-Interventionsprogramme. Psychotherapie im Dialog, 19(04), 71– 75. https://doi.org/10.1055/a-0592-0230 


Contact Address

Funded by:

Robert Bosch Stiftung GmbH