Comparing evidence-based telemental health treatments for caregivers of children with Prader Willi and Williams syndromes

Abstract

Caregivers of individuals with rare neurogenetic conditions often experience mental health challenges, often alongside substantial experiences of resilience. Unfortunately, caregiving burden can make accessing mental health support difficult, and restricted resources during the COVID-19 pandemic further exasperated these challenges. The present study leveraged a community-academic partnership to pilot three virtual telemental health therapies-Acceptance and Commitment Therapy, Dialectical and Behavioral Therapy, and Integrated Couples' Behavioral Therapy-in a sample of 80 caregivers of individuals with Prader Willi syndrome and Williams syndrome. Across 12 weeks of treatment, caregivers completed clinical assessment forms and daily ecological momentary assessments to monitor well-being and mental health. Results provide preliminary evidence that each treatment was feasible, acceptable, and potentially effective in addressing the mental health needs of most caregivers. Virtual community-academic partnerships may provide a useful model for supporting caregivers, while also training the next generation of providers ready to meet the unique, persistent needs of this population. Randomized controlled trials are a necessary next step to determining efficacy. Given that mental health challenges for caregivers pre-dated the pandemic and continue to persist, identifying suitable treatment options remains high priority.