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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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References

  • Abidin, R. R. (1995). Parenting stress index, third edition: Professional manual. Odessa, FL: Psychological Assessment Resources, Inc.

    Google Scholar 

  • Acri, M., Olin, S. S., Burton, G., Herman, R. J., & Hoagwood, K. E. (2015). Innovations in the identification of referral of mothers at risk for depression: Development of a peer-to-peer model. Journal of Child and Family Studies, 23(5), 837–843. doi:10.1007/s10826-013-9736-z.Innovations.

    Article  Google Scholar 

  • American Psychiatric Association (2013). DSM-5. American Journal of Psychiatry. doi:10.1176/appi.books.9780890425596.744053.

    Google Scholar 

  • Batool, S., & Khurshid, S. (2015). Factors associated with stress among parents of children with autism. Journal of the College of Physicians and Surgeons—Pakistan: JCPSP, 25, 752–756. doi:10.2015/JCPSP.752756.

    PubMed  Google Scholar 

  • Brannan, A. M., Heflinger, C. A., & Bickman, L. (1997). The caregiver strain questionnaire: Measuring the impact on the family of living with a child with serious emotional disturbance. Journal of Emotional and Behavioral Disorders, 5(4), 212–222. doi:10.1177/106342669700500404.

    Article  Google Scholar 

  • Chinman, M., George, P., Dougherty, R. H., Daniels, A. S., Ghose, S. S., Swift, A., & Delphin-Rittmon, M. E. (2014). Peer support services for individuals with serious mental illnesses: assessing the evidence. Psychiatric Services (Washington, D.C.), 65(4), 429–441. doi:10.1176/appi.ps.201300244.

    Article  Google Scholar 

  • Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X.-H., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism: The International Journal of Research and Practice, 13(4), 375–387. doi:10.1177/1362361309105658.

    Article  Google Scholar 

  • Frieden, T. R., Jaffe, H. W., Cono, J., Richards, C. L., & Iademarco, M. F. (2014). Prevalence of autism spectrum disorder among children aged 8 years—Autism and developmental disabilities monitoring network, 11 sites, United States, 2010. Morbidity and Mortality Weekly Report. Surveillance Summaries, 63(2), 1–21.

    Google Scholar 

  • Hoagwood, K. E. (2005). Family-based services in children’s mental health: A research review and synthesis. Journal of Child Psychology and Psychiatry, 46(7), 690–713. doi:10.1111/j.1469-7610.2005.01451.x.

    Article  PubMed  Google Scholar 

  • Hoagwood, K. E., Green, E., Kelleher, K., Schoenwald, S., Rolls-Reutz, J., Landsverk, J., … & Mayberg, S. (2008). Family advocacy, support and education in children’s mental health: results of a national survey. Administration and Policy in Mental Health, 35(1–2), 73–83. doi:10.1007/s10488-007-0149-4.

    Article  PubMed  Google Scholar 

  • Jackson, A. C., Liang, R. P.-T., Frydenberg, E., Higgins, R. O., & Murphy, B. M. (2016). Parent education programmes for special health care needs children: A systematic review. Journal of Clinical Nursing, 25(11–12), 1528–1547. doi:10.1111/jocn.13178.

    Article  PubMed  Google Scholar 

  • Jensen, P. H., & Hoagwood, K. (2008). Improving children’s mental health through parent empowerment: A guide to assisting families. Oxford: Oxford University Press.

  • Ji, N. Y., & Findling, R. L. (2015). An update on pharmacotherapy for autism spectrum disorder in children and adolescents. Current Opinion in Psychiatry, 28, 91–101. doi:10.1097/YCO.0000000000000132.

    PubMed  Google Scholar 

  • Jocelyn, L. J., Casiro, O. G., Beattie, D., Bow, J., & Kneisz, J. (1998). Treatment of children with autism: a randomized controlled trial to evaluate a caregiver-based intervention program in community day-care centers. Journal of Developmental & Behavioral Pediatrics, 19, 326–334.

    Article  Google Scholar 

  • Khanna, R., Madhavan, S. S., Smith, M. J., Tworek, C., Patrick, J. H., & Becker-Cottrill, B. (2012). Psychometric properties of the Caregiver Strain Questionnaire (CGSQ) among caregivers of children with autism. Autism: The International Journal of Research and Practice, 16(2), 179–199. doi:10.1177/1362361311406143.

    Article  Google Scholar 

  • Kirby, A. V., White, T. J., & Baranek, G. T. (2015). Caregiver strain and sensory features in children with autism spectrum disorder and other developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 120(1), 32–45. doi:10.1352/1944-7558-120.1.32.

    Article  PubMed  PubMed Central  Google Scholar 

  • Koh, H. K., Graham, G., & Glied, S. A (2011). Reducing racial and ethnic disparities: the action plan from the department of health and human services. Health Affairs (Project Hope), 30(10), 1822–1829. doi:10.1377/hlthaff.2011.0673.

    Article  Google Scholar 

  • Koren, P. E., DeChillo, N., & Friesen, B. J. (1992). Measuring empowerment in families whose children have emotional disabilities: A brief questionnaire. Rehabilitation Psychology, 37(4), 305–321. doi:10.1037/h0079106.

    Article  Google Scholar 

  • Koroloff, N. M., Elliott, D. J., Paul, E., & Friesen, B. J. (1996). Linking low-income families to children’s mental health services: An outcome study. Journal of Emotional and Behavioral Disorders, 4(1986), 2–11.

    Article  Google Scholar 

  • Kuhn, J. C., & Carter, A. S. (2006). Maternal self-efficacy and associated parenting cognitions among mothers of children with autism. The American Journal of Orthopsychiatry, 76(4), 564–575. doi:10.1037/0002-9432.76.4.564.

    Article  PubMed  Google Scholar 

  • Liptak, G. S., Benzoni, L. B., Mruzek, D. W., Nolan, K. W., Thingvoll, M. A., Wade, C. M., & Fryer, G. E. (2008). Disparities in diagnosis and access to health services for children with autism: Data from the National Survey of Children’s Health. Journal of Developmental and Behavioral Pediatrics: JDBP, 29(3), 152–160. doi:10.1097/DBP.0b013e318165c7a0.

    Article  PubMed  Google Scholar 

  • Lord, C., Rutter, M., DiLavore, P., Risi, S., Gotham, K., & Bishop, D. (2012). Autism diagnostic observation schedule, second edition (ADOS-2) manual (Part I): Modules 1–4. Torrance, CA: Western Psychological Services.

    Google Scholar 

  • Magaña, S., Lopez, K., Aguinaga, A., & Morton, H. (2013). Access to diagnosis and treatment services among latino children with autism spectrum disorders. Intellectual and Developmental Disabilities, 51(3), 141–153. doi:10.1352/1934-9556-51.3.141.

    Article  PubMed  Google Scholar 

  • Magaña, S., Parish, S. L., & Son, E. (2015). Have racial and ethnic disparities in the quality of health care relationships changed for children with developmental disabilities and ASD? American Journal on Intellectual and Developmental Disabilities, 120(6), 504–513. doi:10.1352/1944-7558-120.6.504.

    Article  PubMed  Google Scholar 

  • Mandell, D. S., Listerud, J., Levy, S. E., & Pinto-Martin, J. A. (2002). Race differences in the age at diagnosis among medicaid-eligible children with autism. Journal of the American Academy of Child and Adolescent Psychiatry, 41(12), 1447–1453. doi:10.1097/00004583-200212000-00016.

    Article  PubMed  Google Scholar 

  • Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., DiGuiseppi, C., Durkin, M. S., … & Kirby, R. S. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health, 99(3), 493–498. doi:10.2105/AJPH.2007.131243.

    Article  PubMed  PubMed Central  Google Scholar 

  • McKay, M. M., & Bannon, W. M. (2004). Engaging families in child mental health services. Child and Adolescent Psychiatric Clinics of North America, 13(4), 905–921. doi:10.1016/j.chc.2004.04.001.

    Article  PubMed  Google Scholar 

  • Montes, G., & Halterman, J. S. (2008). Association of childhood autism spectrum disorders and loss of family income. Pediatrics, 121(4), e821–e826. doi:10.1542/peds.2007-1594.

    Article  PubMed  Google Scholar 

  • Olin, S. S., Hoagwood, K. E., Rodriguez, J., Radigan, M., Burton, G., Cavaleri, M., & Jensen, P. S. (2010). Impact of empowerment training on the professional work of family peer advocates. Children and Youth Services Review, 32(10), 1426–1429. doi:10.1016/j.childyouth.2010.06.012.

    Article  PubMed  PubMed Central  Google Scholar 

  • Pevsner, R. (1982). Group parent training versus individual an outcome study family therapy: Over the past 10 years, emphasis upon training parents to deal with their children’ s behavior problems has been increasing (Graziano, 1975). The Approach has Already Been Repo, 13(2), 119–122.

    Google Scholar 

  • Radigan, M., Wang, R., Chen, Y., & Xiang, J. (2014). Youth and caregiver access to peer advocates and satisfaction with mental health services. Community Mental Health Journal, 50(8), 915–921. doi:10.1007/s10597-014-9709-8.

    Article  PubMed  Google Scholar 

  • Rodriguez, J., Olin, S. S., Hoagwood, K. E., Shen, S., Burton, G., Radigan, M., & Jensen, P. S. (2011). The development and evaluation of a parent empowerment program for family peer advocates. Journal of Child and Family Studies, 20(4), 397–405. doi:10.1016/j.micinf.2011.07.011.Innate.

    Article  PubMed  PubMed Central  Google Scholar 

  • Rutter, M., Le Couteur, A., & Lord, C. (2003). ADI-R autism diagnostic interview—Revised. Los Angeles, CA: Western Psychological Services.

    Google Scholar 

  • Sherbourne, C. D., & Stewart, A. L. (1991). The MOS social support survey. Social Science & Medicine, 32(6), 705–714. doi:10.1016/0277-9536(91)90150-B.

    Article  Google Scholar 

  • Silva, L. M. T., & Schalock, M. (2012). Autism parenting stress index: Initial psychometric evidence. Journal of Autism and Developmental Disorders, 42(4), 566–574. doi:10.1007/s10803-011-1274-1.

    Article  PubMed  Google Scholar 

  • Singh, N. N., Curtis, W. J., Ellis, C. R., Nicholson, M. W., Villani, T. M., & Wechsler, H. A. (1995). Psychometric analysis of the family empowerment scale. Journal of Emotional and Behavioral Disorders, 3(2), 85–91. doi:10.1177/106342669500300203.

    Article  Google Scholar 

  • Valicenti-McDermott, M., Lawson, K., Hottinger, K., Seijo, R., Schechtman, M., Shulman, L., & Shinnar, S. (2015). Parental stress in families of children with autism and other developmental disabilities. Journal of Child Neurology, 30(13), 1728–1735. doi:10.1177/0883073815579705.

    Article  PubMed  Google Scholar 

  • Vuorenmaa, M., Halme, N., Åstedt-Kurki, P., Kaunonen, M., & Perälä, M.-L. (2014). Validity and reliability of the personnel version of the Family Empowerment Scale (FES) for the social, health and educational services in Finland. Journal of Advanced Nursing, 70(4), 927–936. doi:10.1111/jan.12242.

    Article  PubMed  Google Scholar 

  • Wisdom, J. P., Box, R. D., & York, N. (2011a). Family peer advocates: A pilot study of the content and process of services provision. Journal of Child and Family Studies, 20(6), 833–843. doi:10.1007/s10826-011-9451-6.Family.

    Article  PubMed  PubMed Central  Google Scholar 

  • Wisdom, J. P., Olin, S., Shorter, P., Burton, G., & Hoagwood, K. (2011b). Family peer advocates: A pilot study of the content and process of service provision. Journal of Child and Family Studies, 20(6), 833–843. doi:10.1007/s10826-011-9451-6.

    Article  PubMed  PubMed Central  Google Scholar 

  • Yancey, A. K., Ortega, A. N., & Kumanyika, S. K. (2006). Effective recruitment and retention of minority research participants. Annual Review of Public Health, 27(1), 1–28. doi:10.1146/annurev.publhealth.27.021405.102113.

    Article  PubMed  Google Scholar 

  • Zamora, I., Williams, M. E., Higareda, M., Wheeler, B. Y., & Levitt, P. (2015). Brief report: Recruitment and retention of minority children for autism research. Journal of Autism and Developmental Disorders. doi:10.1007/s10803-015-2603-6.

    Google Scholar 

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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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Authors and Affiliations

  1. Seaver Autism Center for Research and Treatment, Icahn School of Medicine at Mount Sinai, One Gustave L. Levy Place, Box 1230, New York, NY, 10029, USA

    J. M. Jamison, E. Fourie, P. M. Siper, M. P. Trelles, Julia George-Jones, A. Buxbaum Grice, J. D. Buxbaum & Alexander Kolevzon

  2. Department of Psychiatry, Icahn School of Medicine at Mount Sinai, New York, NY, USA

    P. M. Siper, M. P. Trelles, J. D. Buxbaum & Alexander Kolevzon

  3. Private Practice, New York, NY, USA

    J. Krata

  4. Saint Paul College, 235 Marshall Avenue, St. Paul, MN, 55102, USA

    E. Holl

  5. NYC Human Resources Administration, 150 Greenwich St., New York, NY, 10007, USA

    J. Shaoul

  6. Young Adult Institute (YAI) Autism Center, 460 W. 34th St., New York, NY, 10001, USA

    B. Hernandez & L. Mitchell

  7. McSilver Institute for Poverty Policy and Research, New York University Silver School of Social Work, 1 Washington Square North, G03, New York, NY, 10003, USA

    M. M. McKay

  8. Department of Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai, New York, NY, USA

    J. D. Buxbaum

  9. Department of Neuroscience, Icahn School of Medicine at Mount Sinai, New York, NY, USA

    J. D. Buxbaum

  10. Friedman Brain Institute, Icahn School of Medicine at Mount Sinai, New York, NY, USA

    J. D. Buxbaum & Alexander Kolevzon

  11. Department of Pediatrics, Icahn School of Medicine at Mount Sinai, New York, NY, USA

    Alexander Kolevzon

  12. Mindich Child Health and Development Institute, Icahn School of Medicine at Mount Sinai, New York, NY, USA

    J. D. Buxbaum & Alexander Kolevzon

Authors
  1. J. M. Jamison
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  2. E. Fourie
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  3. P. M. Siper
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  4. M. P. Trelles
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  5. Julia George-Jones
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  6. A. Buxbaum Grice
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  7. J. Krata
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  8. E. Holl
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  9. J. Shaoul
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  10. B. Hernandez
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  11. L. Mitchell
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  12. M. M. McKay
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  13. J. D. Buxbaum
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  14. Alexander Kolevzon
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Corresponding author

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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