Mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and accept
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(2020) 6:124
RESEARCH
Open Access
Mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable Suzannah Iadarola1*, Melanie Pellecchia2, Aubyn Stahmer3, Hyon Soo Lee4, Lindsay Hauptman4, Elizabeth McGhee Hassrick5, Samantha Crabbe2, Sarah Vejnoska3, Elizabeth Morgan3, Heather Nuske2, Paul Luelmo6, Chris Friedman5, Connie Kasari3, Amanda Gulsrud4, David Mandell2 and Tristram Smith1ˆ
Abstract Introduction: Children with autism spectrum disorder (ASD) benefit when their caregivers can effectively advocate for appropriate services. Barriers to caregiver engagement such as provider mistrust, cultural differences, stigma, and lack of knowledge can interfere with timely service access. We describe Mind the Gap (MTG), an intervention that provides education about ASD, service navigation, and other topics relevant to families whose children have a new ASD diagnosis. MTG was developed via community partnerships and is explicitly structured to reduce engagement barriers (e.g., through peer matching, meeting flexibility, culturally-informed practices). We also present on the results of a pilot of MTG, conducted in preparation for a randomized controlled trial. Methods: MTG was evaluated using mixed methods that included qualitative analysis and pre/post-test without concurrent comparison group. Participants (n=9) were primary caregivers of children (ages 2-7 years) with a recent ASD diagnosis and whose annual income was at or below 185% of the federal poverty level. In order to facilitate trust and relationship building, peer coaches delivered MTG. The coaches were parents of children with ASD who we trained to deliver the intervention. MTG consisted of up to 12 meetings between coaches and caregivers over the course of 18 weeks. Coaches delivered the intervention in homes and other community locations. Coaches shared information about various “modules,” which were topics identified as important for families with a new ASD diagnosis. Coaches worked with families to answer questions, set weekly goals, assess progress, and offer guidance. For the pilot, we focused on three primary outcomes: feasibility, engagement, and satisfaction. Feasibility was measured via enrollment and retention data, as well as coach fidelity (i.e., implementation of MTG procedures). Engagement was measured via number of sessions attended and percentage completion of the selected outcome measures. For completers (n=7), satisfaction was measured via a questionnaire (completed by caregivers) and openended interviews (completed by caregivers and coaches). (Continued on next page)
* Correspondence: [email protected] ^Deceased 1 University of Rochester Medical Center, 601 Elmwood Ave, Box 671, Rochester, NY 14642, USA Full list of author information is available at the end of the article © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduc
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