Skip to main content

Welkom bij Scalda & Bohn Stafleu van Loghum

Scalda heeft ervoor gezorgd dat je Mijn BSL eenvoudig en snel kunt raadplegen.Je kunt de producten hieronder links aanschaffen en rechts inloggen.

Registreer

Schaf de BSL Academy aan: 

BSL Academy mbo AG

Eenmaal aangeschaft kun je thuis, of waar ook ter wereld toegang krijgen tot Mijn BSL.

Heb je een vraag, neem dan contact op met Jan van der Velden.

Login

Als u al geregistreerd bent, hoeft u alleen maar in te loggen om onbeperkt toegang te krijgen tot Mijn BSL.

Top
Gepubliceerd in:

01-12-2023 | Original Paper

Racial and Practical Barriers to Diagnostic and Treatment Services for Black Families of Autistic Youth: A Mixed-Method Exploration

Auteurs: Harlee Onovbiona, Lauren Quetsch, Rebecca Bradley

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 12/2024

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

Abstract

The present study explored the role race-related barriers and practical barriers to treatment participation play in treatment effectiveness and satisfaction among Black families with autistic youth using a mixed-method approach. In a sample of Black caregivers with autistic youth (N = 101), multiple regressions were conducted to examine the impact of reported racial and practical barriers on parental stress, treatment effectiveness, and treatment satisfaction. Caregivers provided further narratives on their experience navigating diagnostic and treatment services in qualitative interviews. The study demonstrated that Black caregivers of autistic youth are still encountering several racial and logistical barriers when seeking treatment and diagnostic services for their children. These barriers negatively impact caregiver stress and caregiver perceived treatment quality. Contrary to the barriers and stress experienced by Black caregivers, caregivers are generally satisfied with the treatments they are utilizing and find them helpful. The narratives told by caregivers further elucidate the tumultuous experiences of Black caregivers as they seek diagnostic and treatment services for their children. An experience that may be worsened by family, professional, and systemic barriers, and can be improved by advocacy, acceptance, peer and community support, and increased knowledge. Black families of autistic youth call for increased compassion, support, training, and humility among professionals who serve autistic youth.
Bijlagen
Alleen toegankelijk voor geautoriseerde gebruikers
Literatuur
go back to reference Chapman, R., & Bovell, V. (2022). Neurodiversity, advocacy, anti-therapy. In J. L. Matson & P. Sturmey (Eds.), Handbook of autism and pervasive developmental disorder: Autism and child psychopathology series. Springer. Chapman, R., & Bovell, V. (2022). Neurodiversity, advocacy, anti-therapy. In J. L. Matson & P. Sturmey (Eds.), Handbook of autism and pervasive developmental disorder: Autism and child psychopathology series. Springer.
go back to reference Drame, E., Adams, T., Nolden, V., & Nardi, J. (2020). The resistance. Peter Lang Publishing Group. Drame, E., Adams, T., Nolden, V., & Nardi, J. (2020). The resistance. Peter Lang Publishing Group.
go back to reference Gopalan, G., Goldstein, L., Klingenstein, K., Sicher, C., Blake, C., & McKay, M. M. (2010). Engaging families into child mental health treatment: Updates and special considerations. Journal of the Canadian Academy of Child and Adolescent Psychiatry, 19(3), 182–196.PubMedPubMedCentral Gopalan, G., Goldstein, L., Klingenstein, K., Sicher, C., Blake, C., & McKay, M. M. (2010). Engaging families into child mental health treatment: Updates and special considerations. Journal of the Canadian Academy of Child and Adolescent Psychiatry, 19(3), 182–196.PubMedPubMedCentral
go back to reference Hinkle, E. D., Wiersma, W., & Jurs, G. S. (2003). Applied statistics for the behavioral sciences (5th ed.). Houghton Mifflin. Hinkle, E. D., Wiersma, W., & Jurs, G. S. (2003). Applied statistics for the behavioral sciences (5th ed.). Houghton Mifflin.
go back to reference Hutson, T. M., McGhee Hassrick, E., Fernandes, S., Walton, J., Bouvier-Weinberg, K., Radcliffe, A., & Allen-Handy, A. (2022). “I’m just different–that’s all–I’m so sorry …”: Black men, ASD and the urgent need for DisCrit Theory in police encounters. Policing: an International Journal, 45(3), 524–537. https://doi.org/10.1108/PIJPSM-10-2021-0149CrossRef Hutson, T. M., McGhee Hassrick, E., Fernandes, S., Walton, J., Bouvier-Weinberg, K., Radcliffe, A., & Allen-Handy, A. (2022). “I’m just different–that’s all–I’m so sorry …”: Black men, ASD and the urgent need for DisCrit Theory in police encounters. Policing: an International Journal, 45(3), 524–537. https://​doi.​org/​10.​1108/​PIJPSM-10-2021-0149CrossRef
go back to reference Hyland, S., Langton, L., & Davis, E. (2015). Police use of nonfatal force, 2002–11. US Department of Justice, Office of Justice Programs, Bureau of Justice Statistics. Hyland, S., Langton, L., & Davis, E. (2015). Police use of nonfatal force, 2002–11. US Department of Justice, Office of Justice Programs, Bureau of Justice Statistics.
go back to reference Iadarola, S., Pellecchia, M., Stahmer, A., Lee, S., Hauptman, L., Hassrick, M., Crabbe, S., Vejnoska, S., Morgan, E., Nuske, H., Luelmo, P., Friedman, C., Kasari, C., Gulsrud, A., Mandell, D., & Smith, T. (2020). Mind the gap: An intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable. Pilot Feasibility Studies, 7(6), 124. https://doi.org/10.1186/s40814-020-00662-6CrossRef Iadarola, S., Pellecchia, M., Stahmer, A., Lee, S., Hauptman, L., Hassrick, M., Crabbe, S., Vejnoska, S., Morgan, E., Nuske, H., Luelmo, P., Friedman, C., Kasari, C., Gulsrud, A., Mandell, D., & Smith, T. (2020). Mind the gap: An intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable. Pilot Feasibility Studies, 7(6), 124. https://​doi.​org/​10.​1186/​s40814-020-00662-6CrossRef
go back to reference Lovelace, T., Robertson, R. E., & Tamayo, S. (2018). Experiences of African American mothers of sons with autism spectrum disorder: Lessons for improving service delivery. Education and Training in Autism and Developmental Disabilities, 53, 3–16. Lovelace, T., Robertson, R. E., & Tamayo, S. (2018). Experiences of African American mothers of sons with autism spectrum disorder: Lessons for improving service delivery. Education and Training in Autism and Developmental Disabilities, 53, 3–16.
go back to reference Martinez, M., Thomas, K. C., Williams, C. S., Christian, R., Crais, E., Pretzel, R., & Hooper, S. R. (2018). Family experiences with the diagnosis of autism spectrum disorder: System barriers and facilitators of efficient diagnosis. Journal of Autism and Developmental Disorders, 48(7), 2368–2378. https://doi.org/10.1007/s10803-018-3493-1CrossRefPubMed Martinez, M., Thomas, K. C., Williams, C. S., Christian, R., Crais, E., Pretzel, R., & Hooper, S. R. (2018). Family experiences with the diagnosis of autism spectrum disorder: System barriers and facilitators of efficient diagnosis. Journal of Autism and Developmental Disorders, 48(7), 2368–2378. https://​doi.​org/​10.​1007/​s10803-018-3493-1CrossRefPubMed
go back to reference Mello, M. P., Urbano, R. C., Goldman, S. E., & Hodapp, R. M. (2016). Services for children with autism spectrum disorder: Comparing rural and non-rural communities. Education and Training in Autism and Developmental Disabilities, 51, 355–365. Mello, M. P., Urbano, R. C., Goldman, S. E., & Hodapp, R. M. (2016). Services for children with autism spectrum disorder: Comparing rural and non-rural communities. Education and Training in Autism and Developmental Disabilities, 51, 355–365.
go back to reference Murry, V. M., Butler-Barnes, S. T., Mayo-Gamble, T. L., & Inniss-Thompson, M. N. (2018). Excavating new constructs for family stress theories in the context of everyday life experiences of Black American families. Journal of Family Theory & Review, 10, 384–405. https://doi.org/10.1111/jftr.12256CrossRef Murry, V. M., Butler-Barnes, S. T., Mayo-Gamble, T. L., & Inniss-Thompson, M. N. (2018). Excavating new constructs for family stress theories in the context of everyday life experiences of Black American families. Journal of Family Theory & Review, 10, 384–405. https://​doi.​org/​10.​1111/​jftr.​12256CrossRef
go back to reference Pearson, J. N., & Meadan, H. (2018). African American parents’ perceptions of diagnosis and services for children with autism. Education and Training in Autism and Developmental Disabilities, 53, 17–32. Pearson, J. N., & Meadan, H. (2018). African American parents’ perceptions of diagnosis and services for children with autism. Education and Training in Autism and Developmental Disabilities, 53, 17–32.
go back to reference Postorino, V., Sharp, W. G., McCracken, C. E., Bearss, K., Burrell, T. L., Evans, A. N., & Scahill, L. (2017). A systematic review and meta-analysis of parent training for disruptive behavior in children with autism spectrum disorder. Clinical Child and Family Psychology Review, 20(4), 391–402. https://doi.org/10.1007/s10567-017-0237-2CrossRefPubMed Postorino, V., Sharp, W. G., McCracken, C. E., Bearss, K., Burrell, T. L., Evans, A. N., & Scahill, L. (2017). A systematic review and meta-analysis of parent training for disruptive behavior in children with autism spectrum disorder. Clinical Child and Family Psychology Review, 20(4), 391–402. https://​doi.​org/​10.​1007/​s10567-017-0237-2CrossRefPubMed
go back to reference Price, M. A., Weisz, J. R., McKetta, S., Hollinsaid, N. L., Lattanner, M. R., Reid, A. E., & Hatzenbuehler, M. L. (2022). Meta-analysis: Are psychotherapies less effective for Black youth in communities with higher levels of anti-Black racism? Journal of the American Academy of Child and Adolescent Psychiatry, 61(6), 754–763. https://doi.org/10.1016/j.jaac.2021.07.808CrossRefPubMed Price, M. A., Weisz, J. R., McKetta, S., Hollinsaid, N. L., Lattanner, M. R., Reid, A. E., & Hatzenbuehler, M. L. (2022). Meta-analysis: Are psychotherapies less effective for Black youth in communities with higher levels of anti-Black racism? Journal of the American Academy of Child and Adolescent Psychiatry, 61(6), 754–763. https://​doi.​org/​10.​1016/​j.​jaac.​2021.​07.​808CrossRefPubMed
go back to reference Pukki, H., Bettin, J., Outlaw, A. G., Hennessy, J., Brook, K., Dekker, M., Doherty, M., Shaw, S. C. K., Bervoets, J., Rudolph, S., Corneloup, T., Derwent, K., Lee, O., Rojas, Y. G., Lawson, W., Gutierrez, M. V., Petek, K., Tsiakkirou, M., Suoninen, A., & Yoon, W. H. (2022). Autistic perspectives on the future of clinical autism research. Autism in Adulthood, 4(2), 93–101. https://doi.org/10.1089/aut.2022.0017CrossRefPubMedPubMedCentral Pukki, H., Bettin, J., Outlaw, A. G., Hennessy, J., Brook, K., Dekker, M., Doherty, M., Shaw, S. C. K., Bervoets, J., Rudolph, S., Corneloup, T., Derwent, K., Lee, O., Rojas, Y. G., Lawson, W., Gutierrez, M. V., Petek, K., Tsiakkirou, M., Suoninen, A., & Yoon, W. H. (2022). Autistic perspectives on the future of clinical autism research. Autism in Adulthood, 4(2), 93–101. https://​doi.​org/​10.​1089/​aut.​2022.​0017CrossRefPubMedPubMedCentral
go back to reference Stahmer, A. C., Vejnoska, S., Iadarola, S., Straiton, D., Segovia, F. R., Luelmo, P., Morgan, E. H., Lee, H. S., Javed, A., Bronstein, B., Hochheimer, S., Cho, E., Aranbarri, A., Mandell, D., Hassrick, E. M., Smith, T., & Kasari, C. (2019). Caregiver voices: Cross-cultural input on improving access to autism services. Journal of Racial and Ethnic Health Disparities, 6(4), 752–773. https://doi.org/10.1007/s40615-019-00575-yCrossRefPubMedPubMedCentral Stahmer, A. C., Vejnoska, S., Iadarola, S., Straiton, D., Segovia, F. R., Luelmo, P., Morgan, E. H., Lee, H. S., Javed, A., Bronstein, B., Hochheimer, S., Cho, E., Aranbarri, A., Mandell, D., Hassrick, E. M., Smith, T., & Kasari, C. (2019). Caregiver voices: Cross-cultural input on improving access to autism services. Journal of Racial and Ethnic Health Disparities, 6(4), 752–773. https://​doi.​org/​10.​1007/​s40615-019-00575-yCrossRefPubMedPubMedCentral
go back to reference Steinbrenner, J. R., McIntyre, N., Rentschler, L. F., Pearson, J. N., Luelmo, P., Jaramillo, M. E., Boyd, B. A., Wong, C., Nowell, S. W., Odom, S. L., & Hume, K. A. (2022). Patterns in reporting and participant inclusion related to race and ethnicity in autism intervention literature: Data from a large-scale systematic review of evidence-based practices. Autism, 26(8), 2026–2040. https://doi.org/10.1177/13623613211072593CrossRefPubMedPubMedCentral Steinbrenner, J. R., McIntyre, N., Rentschler, L. F., Pearson, J. N., Luelmo, P., Jaramillo, M. E., Boyd, B. A., Wong, C., Nowell, S. W., Odom, S. L., & Hume, K. A. (2022). Patterns in reporting and participant inclusion related to race and ethnicity in autism intervention literature: Data from a large-scale systematic review of evidence-based practices. Autism, 26(8), 2026–2040. https://​doi.​org/​10.​1177/​1362361321107259​3CrossRefPubMedPubMedCentral
go back to reference Williams, T. V., Hartmann, K., Paulson, J. F., Raffaele, C. T., & Urbano, M. R. (2019). Life after an autism spectrum disorder diagnosis: A comparison of stress and coping profiles of African American and Euro-American caregivers. Journal of Autism and Developmental Disorders, 49(3), 1024–1034. https://doi.org/10.1007/s10803-018-3802-8CrossRefPubMed Williams, T. V., Hartmann, K., Paulson, J. F., Raffaele, C. T., & Urbano, M. R. (2019). Life after an autism spectrum disorder diagnosis: A comparison of stress and coping profiles of African American and Euro-American caregivers. Journal of Autism and Developmental Disorders, 49(3), 1024–1034. https://​doi.​org/​10.​1007/​s10803-018-3802-8CrossRefPubMed
Metagegevens
Titel
Racial and Practical Barriers to Diagnostic and Treatment Services for Black Families of Autistic Youth: A Mixed-Method Exploration
Auteurs
Harlee Onovbiona
Lauren Quetsch
Rebecca Bradley
Publicatiedatum
01-12-2023
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 12/2024
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-023-06166-5