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ERIC Number: EJ1463016
Record Type: Journal
Publication Date: 2025-Apr
Pages: 22
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1056-263X
EISSN: EISSN-1573-3580
Available Date: 2025-01-02
A Family Peer Advocate Model to Address Disparities in Access to Care for Minority Autistic Children with Co-Occurring Attention-Deficit/Hyperactivity Disorder
Pilar Trelles1,4,10,11; Behrang Mahjani1,2; Emma Wilkinson1,7; Nicholas Buonagura8; Lauren Donnelly1,9; Jennifer Foss Feig1,2,3; Danielle Halpern1,2; Mary McKay10; Paige Siper1,2,3; Joseph D. Buxbaum1,2,3,5,6; Alexander Kolevzon1,2,3,6
Journal of Developmental and Physical Disabilities, v37 n2 p217-238 2025
Purpose: Family Peer Advocates (FPA) are used in healthcare broadly to facilitate engagement and address disparities in care. We previously reported on the benefit of FPAs in the care of autistic children on caregiver stress. Caregivers of autistic children report significant levels of caregiver stress, in particular when associated with co-occurring conditions, such as Attention Deficit/Hyperactivity Disorder (ADHD), which is associated with significant burden and rarely addressed by traditional systems of care. The present study employed a randomized, wait-list controlled design over six months to further evaluate the utility FPAs on the care of autistic children on caregiver stress, family quality of life and treatment utilization in underserved LatinX and Black autistic individuals and their caregivers. Our central hypothesis is that FPAs will be particularly beneficial to autistic participants with co-occurring ADHD. Methods: Participants were randomly assigned to the intervention group (FPA, n = 24) or the control group (treatment as usual, n = 24). Participants assigned to the intervention group completed 12 one-to-one contacts (four in-person, eight remote) with their assigned FPA over a six-month period. All FPAs were certified in New York State and trained to deliver the Parent Empowerment Program. Primary outcome measures were caregiver stress and family quality of life. Secondary outcomes included child behavioral outcomes (i.e., irritability and hyperactivity), home behavioral compliance and service utilization. Variables were measured at baseline, month three and month six. Results: We observed clinically significant improvements in the intervention group on caregiver strain, family quality of life, and disruptive behaviors for autistic participants with co-occurring ADHD, while family treatment satisfaction improved irrespective of co-occurring ADHD. Conclusion: We propose that the FPA model is especially beneficial for caregivers of autistic children with co-occurring ADHD and/or those with a higher incidence of externalizing behaviors.
Springer. Available from: Springer Nature. One New York Plaza, Suite 4600, New York, NY 10004. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-460-1700; e-mail: customerservice@springernature.com; Web site: https://link.springer.com/
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Identifiers - Location: New York
Grant or Contract Numbers: N/A
Author Affiliations: 1Icahn School of Medicine at Mount Sinai, Seaver Autism Center for Research and Treatment, New York, USA; 2Icahn School of Medicine at Mount Sinai, Department of Psychiatry, New York, USA; 3Icahn School of Medicine at Mount Sinai, Mindich Child Health and Development Institute, New York, USA; 4Boston Children’s Hospital, Department of Psychiatry and Behavioral Sciences, Boston, USA; 5Icahn School of Medicine at Mount Sinai, Friedman Brain Institute, New York, USA; 6Icahn School of Medicine at Mount Sinai, Department of Pediatrics, New York, USA; 7University at Albany,, Center for Autism and Related Disabilities, New York, USA; 8Saint John’s University, Department of Psychology, Philadelphia, USA; 9NYU Langone, Child Study Center, Department of Child and Adolescent Psychiatry,, New York, USA; 10Washington University in St. Louis, George Warren Brown School of Social Work,, St. Louis, USA; 11Boston Children’s Hospital, Rosamund Stone Zander Translational Neuroscience Center, Boston, USA