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

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.

Home Tele-monitoring: Economic and Clinical Impact of the Service for Patients with Chronic Respiratory Disease

“…The encephalopathies or neuromuscular disorder, as well as cystic fibrosis, are disease that lead to a significant deterioration of quality of life both in patients (Pé ntek et al 2014; Fidika et al 2015, Smith Grzvwacz 2014. How parents cope with the burden of caring for a chronically ill child depends on various factors: contextual psychological, cultural, emotional, social.…”

The Effect of Parents ‘web-based training on the Level of Post-Traumatic Stress Symptoms in Children: A Quasi-Experimental Study

“…Another similar study examining the impact of e-learning is a study in which efeedback to parents helped children grow and reduce their obesity (16). Also web-based and electronic support for parents of children with cystic fibrosis have also led to reduced anxiety and depression and improved quality of life in parents (15); And e-learning for adolescents aged 11 to 14 with diabetes led to increased quality of life and decreased HbA1c (Hemoglobin A1c) in them (13).…”

“…Based on the results of the studies, Internet-based psychosocial education interventions have been effective for a wide range of populations with physical and psychiatric problems, including the PTSD population and parents of children with trauma; In parents and children (8), Prevents stable and chronic PTSD in children (14). In addition, the provision of an Internet-based psychological support program for caregivers of children with cystic fibrosis has shown reduced anxiety and depression and improved parental quality of life (15). In another study, intervention using Internet feedback has been shown to improve children's growth and reduce their obesity (16).…”

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 (Preprint)

“…In 2008, Swallow et al, [4] described that parents of children with CKD want continuously available, accessible and reliable support. Although in recent years more and more online support programs for parents of children with chronic diseases, such as diabetes mellitus [5,6], cystic fibrosis [7,8] and asthma [9] have been developed, online support programs for parents of children with CKD are lacking.…”