Journal article
Mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable
Pilot and feasibility studies, v 6(1), pp 124-124
01 Jan 2020
PMID: 32944273
Featured in Collection : UN Sustainable Development Goals @ Drexel
Abstract
IntroductionChildren 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.MethodsMTG 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 open-ended interviews (completed by caregivers and coaches).ResultsWe enrolled 56% of referred caregivers and 100% of eligible families. Retention was high (78%). Coaches could deliver the intervention with fidelity, completing, on average, 83% of program components. Engagement also was high; caregivers attended an average of 85% of total possible sessions and completed 100% of their measures. Caregivers indicated moderately high satisfaction with MTG. Qualitative data indicated that caregivers and coaches were positive about intervention content, and the coach-caregiver relationship was important. They also had suggestions for changes.ConclusionMind the Gap demonstrates evidence of feasibility, and data from the pilot suggest that it addresses intervention engagement barriers for a population that is under-represented in research. The results and suggestions from participants were used to inform a large-scale RCT, which is currently underway. Overall, MTG shows promise as an intervention that can be feasibly implemented with under-resourced and ethnic minority families of children with ASDTrial registrationThis study is registered with ClinicalTrials.gov: NCT03711799.
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Details
- Title
- Mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable
- Creators
- Suzannah Iadarola - University of Rochester Medical CenterMelanie Pellecchia - University of PennsylvaniaAubyn Stahmer - University of California, DavisHyon Soo Lee - Semel Institute for Neuroscience and Human BehaviorLindsay Hauptman - University of California, Los AngelesElizabeth McGhee Hassrick - Drexel UniversitySamantha Crabbe - Annenberg Public Policy CenterSarah Vejnoska - University of California, DavisElizabeth Morgan - University of California, DavisHeather Nuske - Annenberg Public Policy CenterPaul Luelmo - San Diego State UniversityChris Friedman - Drexel UniversityConnie Kasari - University of California, DavisAmanda Gulsrud - University of California, Los AngelesDavid Mandell - Annenberg Public Policy CenterTristram Smith - University of Rochester Medical Center
- Publication Details
- Pilot and feasibility studies, v 6(1), pp 124-124
- Publisher
- Springer Nature
- Number of pages
- 13
- Grant note
- UA3 MC11055 / Health Resources Services Administration (HRSA); United States Department of Health & Human Services; United States Health Resources & Service Administration (HRSA)
- Resource Type
- Journal article
- Language
- English
- Academic Unit
- A.J. Drexel Autism Institute; Drexel University
- Web of Science ID
- WOS:000729238200123
- Scopus ID
- 2-s2.0-85090939805
- Other Identifier
- 991020100084604721
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- Collaboration types
- Domestic collaboration
- Web of Science research areas
- Medicine, Research & Experimental