Piloting a community-academic partnership to deploy acceptance and commitment therapy via telehealth for caregivers of children with Angelman syndrome

Abstract

BACKGROUND: Caregivers of children with Angelman syndrome (AS) experience substantial stressors and often experience challenges accessing mental health providers with expertise in their unique family needs.

PURPOSE: Community-academic partnerships have potential for ensuring such treatments are deployed in ways that maximally benefit the patient community.

METHODS: This study examined the effectiveness of using a community-centered approach to training student clinicians to deploy telehealth acceptance and commitment therapy (ACT) with a pilot sample of caregivers (n = 17) with young children diagnosed with AS. Prior to deploying the treatment, clinicians received community-led training on the unique needs of AS families.

RESULTS: Upon completing the abbreviated 9-week protocol, caregivers reported decreases in depression and parenting stress and increases in parenting confidence across treatment, supporting future testing of ACT for AS in the context of randomized control trials.

CONCLUSIONS: Our findings support the feasibility of leveraging community-academic partnerships to co-train graduate-level clinicians to deliver ACT to specialized populations. This is also the first study to document preliminary effectiveness of telehealth ACT in supporting caregivers of children with AS.