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Open Access 01-12-2024 | Anxiety | Research

A web-based psychological support program for caregivers of children with rare chronic diseases: a randomized controlled trial

Authors: Dunja Tutus, Mandy Niemitz, Paul L. Plener, Jörg M. Fegert, Christine Lehmann, Christa Weiss, Christine Knaevelsrud, Lisa Biehl, Miriam Rassenhofer

Published in: Orphanet Journal of Rare Diseases | Issue 1/2024

Abstract

Background

Approximately 50% of rare diseases have symptom onset during childhood. A high level of nursing care and an often uncertain prognosis put caregivers of the affected children at high risk for psychological distress. At the same time, their caregivers have limited access to appropriate psychological care. The aim of this study was to evaluate a web-based psychological support program for caregivers of children with chronic rare diseases (WEP-CARE).

Methods

German-speaking parents (recruited between May 2016 and March 2018) caring for children aged 0–25 years with a rare disease showing clinically relevant anxiety symptoms, were assigned to either the WEP-CARE (n = 38) or treatment as usual (n = 36) condition within a randomized controlled trial. The primary outcome measure was parental anxiety, assessed with the Generalized Anxiety Disorder Questionnaire (GAD-7). Secondary outcomes were fear of disease progression, depression, coping, quality of life and user satisfaction. The group differences were tested through repeated-measures analyses of variance. The WEP-CARE group was additionally followed up three months after the treatment.

Results

A significant time-group interaction was found for anxiety (F (1,35) = 6.13, p = .016), fear of disease progression (F (1,331) = 18.23, p < .001), depression (F (1,74) = 10.79, p = .002) and coping (F (1,233) = 7.02, p = .010), suggesting superiority of the WEP-CARE group. Sustainability of the treatment gains regarding anxiety, fear of disease progression and coping was confirmed at the 6-month follow-up assessment (p < .01). A significant interaction effect could not be found for quality of life (F(1,2) = 0.016; p = .899). Both participating parents and therapists were satisfied with WEP-CARE.

Conclusions

Our results underline the efficacy and feasibility of WEP-CARE for parents of children with various rare diseases.

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Title: A web-based psychological support program for caregivers of children with rare chronic diseases: a randomized controlled trial
Authors: Dunja Tutus
Mandy Niemitz
Paul L. Plener
Jörg M. Fegert
Christine Lehmann
Christa Weiss
Christine Knaevelsrud
Lisa Biehl
Miriam Rassenhofer
Publication date: 01-12-2024
Publisher: BioMed Central
Keywords: Anxiety
Behavioural Therapy
Published in: Orphanet Journal of Rare Diseases / Issue 1/2024
Electronic ISSN: 1750-1172
DOI: https://doi.org/10.1186/s13023-024-03029-9

2024 ASCO Annual Meeting

Springer Medicine

A web-based psychological support program for caregivers of children with rare chronic diseases: a randomized controlled trial

Abstract

Background

Methods

Results

Conclusions

2024 ASCO Annual Meeting

Springer Medicine

Abstract

Background

Methods

Results

Conclusions

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