Abstract
The purpose of the current study was to explore the lived experiences among parent leaders and a program coordinator who participated in a parent-directed training program to support other Latine parents of children with autism spectrum disorder. We used qualitative methods to explore 4 Latine parent leaders’ and 1 program coordinator’s experiences with a parent-directed training program to support other Latine parents who have children with autism spectrum disorder. We interviewed parent leaders and a program coordinator to learn about their lived experiences as leaders in a parent-directed training program. The following themes emerged from Interpretative Phenomenological Analysis data analysis: (a) personal growth, (b) leadership development, (c) sense of connection and community, (d) contributing to a larger and meaningful purpose, and (e) applying knowledge and skills to help other parents. A culturally adapted parent-directed training program has the potential to positively influence Latine parent leaders who are prepared to support parents of children with ASD. There were positive program impacts on parent leaders regarding personal growth, leadership development, connection and community, contribution to a larger purpose, and use of knowledge and skills to help other parents. We also discovered the importance of building a safe community for Latine parent leaders and other parents who have children with ASD in a parent-directed training program.
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References
Bernal, G., Jimenez-Chafey, M. I., & Rodriguez, M. M. (2009). Cultural adaptation of treatments: A resource for considering culture in EB practice. Professional Psychology: Research and Practice, 40, 363–368.
Bernier, G. E., Mao, A., & Yen, J. (2010). Psychopathology, families, and culture: Autism. Child and Adolescent Psychiatric Clinics of North America, 19, 855–867.
Boyle, C. A., Boulet, S., Schieve, L. A., Cohen, R. A., Blumberg, S. J., Yeargin-Allsopp, M., et al. (2011). Trends in the prevalence of developmental disabilities in US children, 1997–2008. Pediatrics, 127, 1034–1042. https://doi.org/10.1016/j.chc.2010.07.005
Buzhardt, J., Rusinko, L., Heitzman-Powell, L., Trevino-Maaack, S., & McGrath, A. (2016). Exploratory evaluation and initial adaptation of a parent training program for Hispanic families of children with autism. Family Process, 55, 107–122.
Centers for Disease Control and Prevention (2023). Key findings from the ADDM Network. Retrieved from https://www.cdc.gov/ncbddd/autism/addm-community-report/key-findings.html
Creswell, J. W. (2009). Research Design: Qualitative, Quantitative, and Mixed Methods Approaches. Sage Publications.
Creswell, J. W. (2012). Educational Research: PLANNING, Conducting, and Evaluating Quantitative and Qualitative Research (4th ed.). Pearson.
Crockett, S., Elghoroury, D., Popiolek, M., & Wummel, B. (2018). The lived experiences of men in a master’s counseling program. Counselor Education and Supervision, 57, 98–115.
Gamboa, S. (2021). Latinos account for over half of the country’s population growth. Retrieved from https://www.nbcnews.com/news/latino/latinos-account-half-countrys-population-growth-rcna1667
Hannon, M. D., Nadrich, T., Ferguson, A. L., Bonner, M. W., Ford, D. J., & Vereen, L. G. (2019). Contributing factors to earning tenure among Black male counselor educators. Counselor Education and Supervision, 58, 82–97. https://doi.org/10.1002/ceas.12133
Hays, D. G., & Singh, A. A. (2012). Qualitative Inquiry in Clinical and Educational Settings. Guilford Press.
Hoagwood, K. E., Olin, S. S., Storfer-Isser, A., Kuppinger, A., Shorter, P., Wang, N. M., Pollock, M., Peth-Pierce, R., & Horwitz, S. (2018). Evaluation of a train-the-trainers model for family peer advocates in children’s mental health. Journal of Child Family Studies, 27, 1130–1136.
Jones, D. R., & Mandell, D. S. (2020). To address racial disparities in autism research, we must think globally, act locally. Autism, 24, 1587–15589.
Kovich, M., Simpson, V. L., Foli, K. J., Hass, Z., & Phillips, R. G. (2023). Application of the PERMA model of well-being in undergraduate students. International Journal of Community Wellbeing, 6, 1–20. https://doi.org/10.1007/s42413-022-00184-4
Kuhn, J. L., Vanegas, S. B., Salgado, R., Borjas, S. K., Magaña, S., & Dawalt, L. S. (2020). The cultural adaptation of a transition program for Latino families of youth with Autism Spectrum Disorder. Family Process, 59, 478–491.
Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic Inquiry. Sage Publications.
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, 29(3), 152–160. https://doi.org/10.1097/DBP.0b013e318165c7a0
Lopez, K., Marroquin, J. M., & Gutierrez, C. (2020). Methods to decrease disparities in age of diagnosis and treatment access among Latinx children. Social Work, 65, 140–148.
Luelmo, P., Kasari, C., & Inc, F. E. (2021). Randomized pilot study of a special education advocacy program for Latinx minority parents of children with autism spectrum disorder. Autism, 25, 1809–1815. https://doi.org/10.1177/1362361321998561
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, 141–153.
Magaña, S., Lopez, K., & Machalicek, W. (2017). Parents taking action: A psycho-educational intervention for Latino parents of children with Autism Spectrum Disorder. Family Process, 56, 59–74. https://doi.org/10.1111/famp.12169
Magaña, S., Lopez, K., Salka, K., Iland, E., Morales, M. A., Torres, M. G., Zeng, W., & Machalicek, W. (2020). A randomized waitlist-control group study of a culturally tailored parent education intervention for Latino parents of children with ASD. Journal of Autism and Developmental Disorders, 50, 250–262. https://doi.org/10.1007/s10803-019-04252-1
Magaña, S., Parish, S. L., Rose, R. A., Timberlake, M., & Swaine, J. G. (2012). Racial and ethnic disparities in quality of health care among children with autism and other developmental disabilities. Intellectual and Developmental Disabilities, 50(4), 287–299. https://doi.org/10.1352/1934-9556-50.4.287
Mortier, K., & Arias, E. (2020). The Latino community is not accustomed to arguing for the rights of their children: How Latina mothers navigate special education. Journal of Latinos and Education. https://doi.org/10.1080/15348431.2020.1804912
Moustakas, C. E. (1994). Phenomenological Research Methods. Sage Publications.
National Autism Center. (2015). Findings and Conclusions: National Standards Project, Phase 2. Randolph.
Nevison, C., & Zahorodny, W. (2019). Race/ethnicity-resolved time trends in United States autism prevalence estimates from IDEA and ADDM. Journal of Autism and Developmental Disorders, 49, 4721–4730. https://doi.org/10.1007/s10803-019-04188-6
Palmer, R. F., Walker, T., Mandell, D., Bayles, B., & Miller, C. S. (2010). Explaining low rates of Autism among Hispanic school-children in Texas. American Journal of Public Health, 100, 270–272.
Positive Psychology Center (2022). Penn resilience program and PERMA workshops. Retrieved from https://ppc.sas.upenn.edu/services/penn-resilience-training
Reivich, K. J., Seligman, M. E. P., & McBride, S. (2011). Master resilience training in the U.S. Army. American Psychologist, 66, 25–34. https://doi.org/10.1037/a0021897
Rivera-Figueroa, K., Marfo, N. Y. A., & Eigsti, I. M. (2022). Parental perceptions of autism spectrum disorder in the Latinx and Black sociocultural context: A systematic review. American Journal of Intellectual Disabilities, 127, 42–63. https://doi.org/10.1352/1944-7558-127.1.42
Rubin, H. J., & Rubin, I. S. (2012). Qualitative Interviewing: The Art of Hearing Data (3rd ed.). Sage publications.
Saenz, V. B., Lu, C., Bukoski, B. E., & Rodriguez, S. (2013). Latino males in Texas community colleges: A phenomenological study of masculinity constructs and their effect on college experiences. Journal of African American Males in Education, 4, 82–101.
Seligman, M. E. P. (2011). Flourish: A Visionary New Understanding of Happiness and Well-Being. Atria Books.
Shepherd, K. G., & Kervick, C. T. (2016). Enhancing collaborative leadership among parents of children with disabilities: New directions for policy and practice. Journal of Disability Policy Studies, 27, 32–42. https://doi.org/10.1177/1044207315576081
Smith, J. A., & Osborn, M. (2007). Pain as an assault on the self: An interpretative phenomenological analysis. Psychology and Health, 22, 517–534. https://doi.org/10.1080/14768320600941756
Stahmer, A. C., Dababnah, S., & Rieth, S. R. (2019). Considerations in implementing evidence-based early autism spectrum disorder interventions in community settings. Pediatric Medicine: A Journal Focusing on Translational and Clinical Research in Pediatrics, 2, 1–10.
Texas Higher Education Coordinating Board (2022). Autism grant program. Retrieved from https://www.highered.texas.gov/
Travers, J. C., Tincani, M., & Krezmien, M. P. (2011). A multiyear national profile of racial disparity in Autism identification. The Journal of Special Education, 47, 41–49.
Vela, J. C., Lenz, A. S., Sparrow, G. S., & Gonzalez, S. L. (2017). Using a positive psychology and family framework to understand Mexican American adolescents’ college-going beliefs. Hispanic Journal of Behavioral Sciences, 39, 66–81.
Vela, J. C., Lu, M. T. P., Lenz, A. S., Savage, M. C., & Guardiola, R. (2016). Positive psychology and Mexican American college students’ subjective well-being and depression. Hispanic Journal of Behavioral Sciences, 38, 324–340. https://doi.org/10.1177/0739986316651618
Vela, J. C., Ramos, N., & Perez, S. (2023a). A pre-experimental evaluation of a 9-session training program with Latinx parents of children with autism. Counseling Outcome Research and Evaluation. https://doi.org/10.1080/21501378.2023.2243324
Vela, J. C., Salinas, C., Lu, M. T., Guerra, F., & Zamora, E. (2023b). Exploring Latinx graduate students’ experiences in online classes at a Hispanic Serving Institution. Journal of Latinos and Education. https://doi.org/10.1080/15348431.2023.2174546
Young, J. S. (2017). Phenomenological designs: The philosophy of phenomenological research. In C. J. Sheperis, J. S. Young, & M. H. Daniels (Eds.), Counseling research: Quantitative, Qualitative, and Mixed Methods (pp. 215–230). Pearson.
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, 46, 698–703.
Zauderer, S. (2023). Individualized Education Programs (IEP) for autism. Retrieved from https://www.crossrivertherapy.com/autism/individualized-education-programs
Zuckerman, K. E., Sinche, B., Mejia, A., Cobian, M., Becker, T., & Nicolaidis, C. (2014). Latino parents’ perspectives on barriers to autism diagnosis. Academy Pediatrics, 14, 301–308. https://doi.org/10.1016/j.acap.2013.12.004
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This work was supported in whole or in part by a grant from the Texas Higher Education Coordinating Board (THECB). The opinions and conclusions expressed in this document are those of the author(s) and do not necessarily represent the opinions or policy of the THECB. The authors do not report any conflict of interests.
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JCV evaluated the impact of the parent-directed training program by analyzing quantitative and qualitative data. He also led efforts to develop and write the manuscript. NR helped develop the parent-directed training program, led workshops with parent leaders and/or parents, supervised parent leaders and the program coordinator, and contributed to developing and writing the manuscript. CF helped develop the parent-directed training program, led workshops with parent leaders and/or parents, and contributed to developing and writing the manuscript. DE helped collect and analyze quantitative and qualitative data. She also contributed to developing and writing the manuscript.
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Vela, J.C., Ramos, N., Fielding, C. et al. Exploring Latine Parent Leaders’ and a Program Coordinator’s Lived Experiences with a Culturally Adapted Parent-Directed Training Program. J Autism Dev Disord (2024). https://doi.org/10.1007/s10803-024-06270-0
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DOI: https://doi.org/10.1007/s10803-024-06270-0