Adaptation and Beta Testing of an Online Group Intervention for Family Caregivers of Children with Rare Diseases

Background: Family caregivers of children with rare diseases are more likely to have symptoms of anxiety, depression, and post-traumatic stress disorder (PTSD). The WHO’s Group Problem Management Plus (Group PM+) is an evidence-based intervention providing psychological help for adults impaired by distress while exposed to adversity. Our objective was to adapt and beta test Group PM+ with family caregivers. Methods: Family caregivers were >18.0 years at enrollment experiencing psychological distress. Rare Group PM+ is five weekly sessions teaching stress management, problem solving, and building social support. Assessments were the PTSD Checklist for DSM-5 (PCL-5), Patient Health Questionnaire-9, and Generalized Anxiety Disorder-7. Paired Wilcoxon signed-rank tests measured the median baseline and 2-week follow-up values. Results: Sessions were reduced to 90 min and delivered through telehealth. Eight participants enrolled, including seven females with mean age of 40 years. Completion and retention rate were 100% (8/8). Participant-identified barriers to joining included: time constraints; concerns about re-traumatization; and confidentiality. PCL-5 decreased from a median of 29 to 17.5; GAD-7 from 11.5 to 4.5; and PHQ-9 median scores decreased but not significantly. Conclusions: Rare Group PM+ demonstrated initial acceptability and feasibility. Future research should examine initial efficacy in a larger rigorous pilot randomized controlled clinical trial.