ArticleHealth and quality of life outcomes2015
A web-based psychological support program for caregivers of children with cystic fibrosis: a pilot study.
Article in Health and quality of life outcomes, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
17 citing papers in PubMed.
- Trial
- A web-based psychological support program for caregivers of children with rare chronic diseases: a randomized controlled trial.Orphanet journal of rare diseases · 2024Trial
- Effect and Process Evaluation of e-Powered Parents, a Web-Based Support Program for Parents of Children With a Chronic Kidney Disease: Feasibility Randomized Controlled Trial.Journal of medical Internet research · 2018Trial
- Performance Evaluation of a Novel Cystic Fibrosis Caregiver Burden Measure Demonstrates Significant Challenges for Parents of Children With CF During the Early Years: The Irish Comparative Outcomes Study (ICOS).Pediatric pulmonology · 2026Article
- Mental Health in Cystic Fibrosis in the Modulator Era: Epidemiology, Prognostic Significance, and Therapeutic Implications.Journal of clinical medicine · 2026Review
- From Promise to Practice: Harmonizing Telemedicine in Pediatric Chronic Respiratory Diseases.Journal of clinical medicine · 2026Review
- Usability Testing of an Internet-Based Responsive Parenting Program for Caregivers of Young Survivors of Childhood Cancer Living in Rural and Appalachian Communities: Mixed Methods Study.JMIR pediatrics and parenting · 2025Article
- Treatment of Psychological Symptoms in Patients with Cystic Fibrosis.Journal of clinical medicine · 2024Review
- The effectiveness of web-based training for parents on post-traumatic stress disorder in children.Frontiers in psychology · 2024Article
- Needs of people with rare diseases that can be supported by electronic resources: a scoping review.BMJ open · 2022Article
- Self-Care Needs and Technology Preferences Among Parents in Marginalized Communities: Participatory Design Study.JMIR pediatrics and parenting · 2021Article
- Article
- Perceived Benefits and Facilitators and Barriers to Providing Psychosocial Interventions for Informal Caregivers of People with Rare Diseases: A Scoping Review.The patient · 2020Article
- Emotional experience in parents of children with Zellweger spectrum disorders: A qualitative study.Molecular genetics and metabolism reports · 2019Article
- Depression Among Caregivers of Children with Cystic Fibrosis: Causes and Solutions.Indian journal of pediatrics · 2018Article
- Quality of life among German parents of children with cystic fibrosis: the effects of being a single caregiver.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2017Article
- Article
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundParents 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.
methodsA 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.
resultsOn 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.
conclusionsWEP-CARE is feasible and promising regarding its efficacy to improve parental mental health and quality of life.
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