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Examining the Efficacy of a Family Peer Advocate Model for Black and Hispanic Caregivers of Children with Autism Spectrum Disorder

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Abstract

Autism spectrum disorder (ASD) affects individuals across all racial and ethnic groups, yet rates of diagnosis are disproportionately higher for Black and Hispanic children. Caregivers of children with ASD experience significant stressors, which have been associated with parental strain, inadequate utilization of mental health services and lower quality of life. The family peer advocate (FPA) model has been utilized across service delivery systems to provide family-to-family support, facilitate engagement, and increase access to care. This study used a randomized controlled design to examine the efficacy of FPAs in a racially and ethnically diverse sample. Results demonstrate significantly increased knowledge of ASD and reduced levels of stress for caregivers who received the FPA intervention as compared to treatment as usual.

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Acknowledgments

We would like to thank all of the children, caregivers, and FPAs who participated in this study.

Author Contributions

JMJ participated in data collection, interpretation and drafting the manuscript. EF participated in data collection, data cleaning, interpretation and drafting the manuscript. PMS participated in data collection and interpretation. She conducted the statistical analysis and helped draft the manuscript. MPT participated in drafting the manuscript and assisted in data analysis and interpretation. JGJ participated in the data analysis and interpretation. AGB assisted in drafting the manuscript. JK participated in the study design and data collection. EH participated in the data collection. JS participated in the study design and data collection. BH participated in the study design and data collection. LM participated in the study design and data collection. MMM participated in the study design. JDB acquired funding and participated in the study design, interpretation of data, and manuscript preparation. AK acquired funding and participated in the study design, data collection, interpretation of data, and manuscript preparation. All authors read and approved the final manuscript.

Funding

This study was supported by a Conduits community engagement research grant from the Icahn School of Medicine at Mount (PI: Kolevzon) and the Beatrice and Samuel A. Seaver Foundation.

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Correspondence to Alexander Kolevzon.

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Conflict of interest

Jesslyn Jamison, Emily Fourie, Maria Pilar Trelles, Julia George-Jones, Ariela Buxbaum Grice, Jill Krata, Emily Holl, Jennifer Shaoul, Brigida Hernandez, Laura Mitchell and Mary McKay reports no biomedical financial interests or potential conflicts of interest. Paige M. Siper received grant support from Autism Speaks (grant #8685) and the Beatrice and Samuel A. Seaver Foundation. Joseph D. Buxbaum holds a shared patent with the Icahn School of Medicine at Mount Sinai for insulin-like growth factor-1 in the treatment of Phelan-McDermid syndrome. Alexander Kolevzon receives research support from NIMH (R34 MH100276-01), NINDS (U54 NS092090- 01), Hoffmann-La Roche, and Neuren Pharmaceuticals and is a consultant for Vencerx Therapeutics, Fulcrum Therapeutics, Ovid Therapeutics, and Supernus Pharmaceuticals.

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All procedures were performed in accordance with the ethical standards of the institutional and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Jamison, J.M., Fourie, E., Siper, P.M. et al. Examining the Efficacy of a Family Peer Advocate Model for Black and Hispanic Caregivers of Children with Autism Spectrum Disorder. J Autism Dev Disord 47, 1314–1322 (2017). https://doi.org/10.1007/s10803-017-3045-0

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