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Improving the Cultural Responsiveness of Measures for Latino Families of Children with Autism

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Abstract

Increasingly, interventions are being developed and tested with families of color, including Latino families of transition-aged youth with autism. However, without culturally responsive measures, it is difficult to determine whether an intervention is effective. The purpose of this study was to improve the cultural responsiveness of measures related to: knowledge of adult disability services, advocacy, and family empowerment. Altogether, 30 Latinx parents of youth with autism participated in this study. Participants completed surveys and interviews to inform changes to the measures. Changes were made in relation to: wording, format, and concepts. The revised measures were demonstrated to have high reliability. Implications for future research and practice are discussed.

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Data Availability

Data are available on the National Database for Autism Registry.

References

  • Aleman-Tovar, J., & Burke, M. M. (2022). A review of the literature about transition planning experiences among culturally and linguistically diverse families of youth with disabilities in the United States. International Review of Research in Developmental Disabilities, 63, 51–102.

    Article  Google Scholar 

  • Bal, A., & Trainor, A. A. (2016). Culturally responsive experimental intervention studies: The development of a rubric for paradigm expansion. Review of Educational Research, 86, 319–359.

    Article  Google Scholar 

  • Balcazar, F. E., Keys, C. B., & Rizzo, T. (1996). Advocate development in the field of developmental disabilities: A data-based conceptual model. Mental Retardation, 34, 341–351.

    CAS  PubMed  Google Scholar 

  • Buren, M. K., Maggin, D. M., & Brown, C. (2020). Meta-synthesis on the experiences of families from nondominant communities and special education collaboration. Exceptionality, 28, 259–278.

    Article  Google Scholar 

  • Burke, M. M., Magaña, S., Garcia, M., & Mello, M. P. (2016). Brief report: The feasibility and effectiveness of an advocacy program for Latino families of children with autism spectrum disorder. Journal of autism and developmental disorders, 46, 2532–2538. 

  • Burke, M. M., Rios, K., Garcia, M., & Magaña, S. (2020). Examining differences in empowerment, special education knowledge, and family–school partnerships among Latino and White families of children with autism spectrum disorder. International Journal of Developmental Disabilities, 66, 75–81.

    Article  Google Scholar 

  • Burke, M. M., Sandman, L., Perez, B., & O’Leary, M. (2018). The phenomenon of legislative advocacy among parents of children with disabilities. Journal of Research in Special Educational Needs, 18, 50–58.

    Article  Google Scholar 

  • Cardona, P., Ruben, J., Demonech-Rodriguez, M., Sullivan, C., Bybee, D., Holtrop, K., Escobar-Chew, A., Tams, L., Dates, D., & Bernal, G. (2012). Culturally adapting an evidence-based parenting intervention for Latino immigrants: The need to integrate fidelity and cultural relevance. Family Process, 51, 56–72.

    Article  PubMed Central  Google Scholar 

  • Cohen, S. R. (2013). Advocacy for “abandonados”: Harnessing cultural beliefs for Latino families and their children with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 10, 71–78.

    Article  Google Scholar 

  • Creswell, J. W., & Poth, C. N. (2016). Qualitative inquiry and research design: Choosing among five approaches. Sage publications.

  • Gjersing, L., Caplehorn, J. R., & Clausen, T. (2010). Cross-cultural adaptation of research instruments: Language, setting, time, and statistical considerations. BMC Medical Research Methodology, 10, 1–10.

    Article  Google Scholar 

  • Gudi, S. K., Tiwari, K. K., & Panjwani, K. (2021). Plain-language summaries: An essential component to promote knowledge translations. International Journal of Clinical Practice, 75, 141–149.

    Article  Google Scholar 

  • Gutierrez, L., & Ortega, R. (1991). Developing methods to empower Latinos: The importance of groups. Social Work with Groups, 14, 23–43.

    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, 305.

    Article  Google Scholar 

  • Lo, L. (2005). Barriers to successful partnerships with Chinese-speaking parents of children with disabilities in urban schools. Multiple Voices for Ethnically Diverse Exceptional Learners, 8, 84–95.

    Article  Google Scholar 

  • Luelmo, P., Kasari, C., & Fiesta Educativa, Inc. (2021). Randomized pilot study of a special education advocacy program for Latinx/minority parents of children with autism spectrum disorder. Autism, 25(6), 1809–1815.

    Article  PubMed  Google Scholar 

  • Magaña, S. (2000). Mental retardation research methods in Latino communities. Mental Retardation, 38, 303–315.

    Article  ADS  PubMed  Google Scholar 

  • 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.

    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.

  • McLendon, T., McLendon, D., & Hatch, L. (2012). Engaging families in the residential treatment process utilizing family-directed structural therapy. Residential Treatment for Children & Youth, 29, 66–77.

    Article  Google Scholar 

  • Montelongo, A. (2015). Latino parents’ perceptions of IEP meetings. McNair Scholars Journal, 16, 109–130.

    Google Scholar 

  • Patton, M. Q. (2014). Qualitative research & evaluation methods: Integrating theory and practice. Sage publications. 

  • Plunge, M. M., & Kratochwill, T. R. (1995). Parental knowledge, involvement, and satisfaction with their child’s special education services. Special Services in the Schools, 10, 113–138.

    Article  Google Scholar 

  • Reese, L., Balzano, S., Gallimore, R., & Goldenberg, C. (2022). The concept of educacion: Latino family values and American schooling. International Journal of Educational Research, 2, 305–328.

    Google Scholar 

  • Rios, K., Burke, M. M., & Aleman-Tovar, J. (2021). A study of the families included in Receiving Better Special Education Services (FIRME) Project for Latinx families of children with autism and developmental disabilities. Journal of Autism and Developmental Disorders, 1–15.

  • Rios, K., & Burke, M. M. (2021). The Effectiveness of special education training programs for parents of children with disabilities: A systematic literature review. Exceptionality, 29, 215–231.

    Article  Google Scholar 

  • Rossetti, Z., Burke, M. M., Rios, K., Rivera, J. I., Schraml-Block, K., Hughes, O., Lee, J., & Aleman-Tovar, J. (2020). Parent leadership and civic engagement: Suggestions for the next individuals with disabilities education act reauthorization. Journal of Disability Policy Studies, 31(2), 99–111.

  • Rutter, M., Bailey, A., & Lord, C. (2023). SCQ: Social communication questionnaire. Western Psychological Services.

  • Shapiro, J., Monzó, L. D., Rueda, R., Gomez, J. A., & Blacher, J. (2004). Alienated advocacy: Perspectives of Latina mothers of young adults with developmental disabilities on service systems. Mental Retardation, 42, 37–54.

    Article  PubMed  Google Scholar 

  • Stoll, M., Kerwer, M., Lieb, K., & Chasiotis, A. (2022). Plain language summaries: A systematic review of theory, guidelines, and empirical research. PLoS ONE, 17, 208–216.

    Article  Google Scholar 

  • Taylor, J. L., Hodapp, R. M., Burke, M. M., Rabideau, C., & Waitz-Kudla, S. N. (2017). Training parents of youth with autism spectrum disorders to advocate for adult disability services: Results from a pilot randomized controlled trial. Journal of Autism and Developmental Disorders, 47, 846–857.

    Article  PubMed  PubMed Central  Google Scholar 

  • Tesch, R. (1991). Computer programs that assist in the analysis of qualitative data: An overview. Qualitative Health Research, 1(3), 309–325. 

  • West, E. A., Travers, J. C., Kempter, T. D., Liberty, L. M., Cote, D. L., McCollow, M. M., & Stanberry Brusnahan, L. L. (2016). Racial and ethnic diversity of participants in research supporting evidence-based practices for learners with autism spectrum disorder. Journal of Special Education, 50, 151–163.

    Article  Google Scholar 

  • WHO. (2019). Process of translation and adaptation of instruments. http://www.who.int/substance_abuse/research_tools/translation/en.

  • Zablotsky, B., Black, L., Maenner, M., Schieve, L. A., Danielson, M., Bitsko, R. H., Blumberg, S. J., Kogan, M. D., & Boyle, C. A. (2019). Prevalence and trends of developmental disabilities among children in the United States: 2009–2017. Pediatrics, 144, 4–13.

    Article  Google Scholar 

  • Zemantic, P. K., Evangeline, C., Kurtz-Nelson, H., Safer-Lichtenstein, J., & McIntyre, L. L. (2021). Family empowerment: Predicting service utilization for children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 11, 1–8.

    Google Scholar 

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Funding

This study was supported by an R03 National Institute of Mental Health grant (R03MH129757).

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Authors and Affiliations

  1. Department of Special Education, Vanderbilt University, 110 Magnolia Circle, Nashville, TN, 37203, USA

    Meghan M. Burke

  2. Department of Special Education, University of Illinois at Urbana-Champaign, Champaign, IL, USA

    Adriana Kaori Terol, Megan Best & Abby Hardy

  3. Doctor of Physical Therapy Program, Northern Illinois University, Dekalb, IL, USA

    W. Catherine Cheung

Authors
  1. Meghan M. Burke
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  2. Adriana Kaori Terol
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  3. Megan Best
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  4. W. Catherine Cheung
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  5. Abby Hardy
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Corresponding author

Correspondence to Meghan M. Burke.

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Ethical Approval

This study was approved by the Institutional Review Board and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Informed consent was obtained from all participants included in the study.

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The authors have no relevant financial or non-financial interests to disclosed.

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Burke, M.M., Terol, A.K., Best, M. et al. Improving the Cultural Responsiveness of Measures for Latino Families of Children with Autism. J Dev Phys Disabil (2024). https://doi.org/10.1007/s10882-024-09954-8

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  • DOI: https://doi.org/10.1007/s10882-024-09954-8

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