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Health and Quality of Life Outcomes
Published in: Health and Quality of Life Outcomes 1/2015

Open Access 01-12-2015 | Research

A web-based psychological support program for caregivers of children with cystic fibrosis: a pilot study

Authors: Astrid Fidika, Marion Herle, Christine Lehmann, Christa Weiss, Christine Knaevelsrud, Lutz Goldbeck

Published in: Health and Quality of Life Outcomes | Issue 1/2015

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Abstract

Background

Parents caring for a child with Cystic Fibrosis (CF) are at high risk for psychological distress and have limited access to psychological care. Therefore, a web-based psychological support program for severely distressed parents of children with CF (WEP-CARE) was developed and evaluated for its feasibility and efficacy.

Methods

A clinical expert panel developed WEP-CARE based on principles of cognitive-behavioral therapy. This web-based writing therapy comprises nine sessions, tailored for the specific needs of caregivers. The pilot study was conducted as a single-group intervention with pre-post-follow-up design. Out of 31 participants, 23 parents completed the intervention (21 female; mean age 37 years; SD = 6.2 years, range 25 – 48 years). Psychological symptoms and quality of life were assessed online by self-report measures at pre- and post-treatment and were followed up three months later.

Results

On average, the caregivers’ symptoms of anxiety decreased statistically significant and clinical relevant about five points from an elevated (M = 11.4; SD =2.6) to a normal level (M = 6.7; SD = 2.6; p < .001) between pre and post treatment. Fear of disease progression (p < .001) and symptoms of depression (p = .02) significantly decreased as well. Quality of life significantly improved (p = .01). The effects were maintained at the 3-months follow-up assessment.

Conclusions

WEP-CARE is feasible and promising regarding its efficacy to improve parental mental health and quality of life.
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Metadata
Title
A web-based psychological support program for caregivers of children with cystic fibrosis: a pilot study
Authors
Astrid Fidika
Marion Herle
Christine Lehmann
Christa Weiss
Christine Knaevelsrud
Lutz Goldbeck
Publication date
01-12-2015
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2015
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/s12955-015-0211-y

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