A web-based psychological support program for caregivers of children with cystic fibrosis: a pilot study
Health and quality of life outcomes(2015)
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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Key words
Cognitive-behavioral therapy, Cystic fibrosis, Parents, Web-based intervention
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