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Mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable

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 des...

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Autores principales: Iadarola, Suzannah, Pellecchia, Melanie, Stahmer, Aubyn, Lee, Hyon Soo, Hauptman, Lindsay, Hassrick, Elizabeth McGhee, Crabbe, Samantha, Vejnoska, Sarah, Morgan, Elizabeth, Nuske, Heather, Luelmo, Paul, Friedman, Chris, Kasari, Connie, Gulsrud, Amanda, Mandell, David, Smith, Tristram
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7487627/
https://www.ncbi.nlm.nih.gov/pubmed/32944273
http://dx.doi.org/10.1186/s40814-020-00662-6
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author Iadarola, Suzannah
Pellecchia, Melanie
Stahmer, Aubyn
Lee, Hyon Soo
Hauptman, Lindsay
Hassrick, Elizabeth McGhee
Crabbe, Samantha
Vejnoska, Sarah
Morgan, Elizabeth
Nuske, Heather
Luelmo, Paul
Friedman, Chris
Kasari, Connie
Gulsrud, Amanda
Mandell, David
Smith, Tristram
author_facet Iadarola, Suzannah
Pellecchia, Melanie
Stahmer, Aubyn
Lee, Hyon Soo
Hauptman, Lindsay
Hassrick, Elizabeth McGhee
Crabbe, Samantha
Vejnoska, Sarah
Morgan, Elizabeth
Nuske, Heather
Luelmo, Paul
Friedman, Chris
Kasari, Connie
Gulsrud, Amanda
Mandell, David
Smith, Tristram
author_sort Iadarola, Suzannah
collection PubMed
description 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 open-ended interviews (completed by caregivers and coaches). RESULTS: We 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. CONCLUSION: Mind 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 ASD TRIAL REGISTRATION: This study is registered with ClinicalTrials.gov: NCT03711799.
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spelling pubmed-74876272020-09-16 Mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable Iadarola, Suzannah Pellecchia, Melanie Stahmer, Aubyn Lee, Hyon Soo Hauptman, Lindsay Hassrick, Elizabeth McGhee Crabbe, Samantha Vejnoska, Sarah Morgan, Elizabeth Nuske, Heather Luelmo, Paul Friedman, Chris Kasari, Connie Gulsrud, Amanda Mandell, David Smith, Tristram Pilot Feasibility Stud Research 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 open-ended interviews (completed by caregivers and coaches). RESULTS: We 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. CONCLUSION: Mind 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 ASD TRIAL REGISTRATION: This study is registered with ClinicalTrials.gov: NCT03711799. BioMed Central 2020-09-07 /pmc/articles/PMC7487627/ /pubmed/32944273 http://dx.doi.org/10.1186/s40814-020-00662-6 Text en © The Author(s) 2020 Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research
Iadarola, Suzannah
Pellecchia, Melanie
Stahmer, Aubyn
Lee, Hyon Soo
Hauptman, Lindsay
Hassrick, Elizabeth McGhee
Crabbe, Samantha
Vejnoska, Sarah
Morgan, Elizabeth
Nuske, Heather
Luelmo, Paul
Friedman, Chris
Kasari, Connie
Gulsrud, Amanda
Mandell, David
Smith, Tristram
Mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable
title Mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable
title_full Mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable
title_fullStr Mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable
title_full_unstemmed Mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable
title_short Mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable
title_sort mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7487627/
https://www.ncbi.nlm.nih.gov/pubmed/32944273
http://dx.doi.org/10.1186/s40814-020-00662-6
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