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Gepubliceerd in: Journal of Autism and Developmental Disorders 10/2015

09-06-2015 | Original Paper

African American Families on Autism Diagnosis and Treatment: The Influence of Culture

Auteurs: Karen Burkett, Edith Morris, Patricia Manning-Courtney, Jean Anthony, Donna Shambley-Ebron

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 10/2015

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Abstract

Cultural factors such as health care access and autism spectrum disorder (ASD) symptom interpretations have been proposed as impacting delayed diagnosis and treatment for African American children with ASD. A qualitative study of urban African American families caring for their child with autism was conducted with 24 family members and 28 ASD professionals. Cultural caring meant families protected their child from harm including potential or actual distrustful encounters, and took action for their child and community to optimize their child’s health and address the knowledge deficits of ASD within their community. Families and professionals believed cultural influences delayed families’ receiving and seeking appropriate health care for the African American child with ASD affecting timely autism diagnosis and treatment.

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Literatuur
go back to reference Baio, J., Wingate, M., Kirby, R. S., Pettygrove, S., Cunniff, C., Schulz, E., & Ghosh, T. (2014). Prevalence of autism spectrum disorder among children aged 8 years-autism and developmental disabilities monitoring network, 11 sites, United States, 2010. MMWR. Morbidity and Mortality Weekly Report, 63(2), 1–21. Baio, J., Wingate, M., Kirby, R. S., Pettygrove, S., Cunniff, C., Schulz, E., & Ghosh, T. (2014). Prevalence of autism spectrum disorder among children aged 8 years-autism and developmental disabilities monitoring network, 11 sites, United States, 2010. MMWR. Morbidity and Mortality Weekly Report, 63(2), 1–21.
go back to reference Betancourt, J. R., Green, A. R., Carrillo, J. E., & Ananeh-Firempong, O. (2003). Defining cultural competence: A practical framework for addressing racial/ethnic disparities in health and health care. Public Health Reports, 118(4), 293–302. PubMedCentralCrossRefPubMed Betancourt, J. R., Green, A. R., Carrillo, J. E., & Ananeh-Firempong, O. (2003). Defining cultural competence: A practical framework for addressing racial/ethnic disparities in health and health care. Public Health Reports, 118(4), 293–302. PubMedCentralCrossRefPubMed
go back to reference Bhasin, T. K., & Schendel, D. (2007). Sociodemographic risk factors for autism in a US metropolitan area. Journal of Autism and Developmental Disorders, 37(4), 667–677. CrossRefPubMed Bhasin, T. K., & Schendel, D. (2007). Sociodemographic risk factors for autism in a US metropolitan area. Journal of Autism and Developmental Disorders, 37(4), 667–677. CrossRefPubMed
go back to reference Bishop, S., Richler, J., Cain, A., & Lord, C. (2007). Predictors of perceived negative impact in mothers of children with autism spectrum disorder. American Journal on Mental Retardation, 112(6), 450–461. CrossRefPubMed Bishop, S., Richler, J., Cain, A., & Lord, C. (2007). Predictors of perceived negative impact in mothers of children with autism spectrum disorder. American Journal on Mental Retardation, 112(6), 450–461. CrossRefPubMed
go back to reference Brandon, D., Isaac, L., & LaVeist, T. (2005). The legacy of Tuskegee and trust in medical care: Is Tuskegee responsible for race differences in mistrust of medical care? Journal of National Medical Association, 97(7), 951–956. Brandon, D., Isaac, L., & LaVeist, T. (2005). The legacy of Tuskegee and trust in medical care: Is Tuskegee responsible for race differences in mistrust of medical care? Journal of National Medical Association, 97(7), 951–956.
go back to reference Bussing, R., Zima, B. T., Gary, F. A., & Garvan, C. W. (2003). Barriers to detection, help-seeking, and service use for children with ADHD symptoms. The Journal of Behavioral Health Services & Research, 30(2), 176–189. CrossRef Bussing, R., Zima, B. T., Gary, F. A., & Garvan, C. W. (2003). Barriers to detection, help-seeking, and service use for children with ADHD symptoms. The Journal of Behavioral Health Services & Research, 30(2), 176–189. CrossRef
go back to reference Cuccaro, M. L., Brinkley, J., Abramson, R. K., Hall, A., Wright, H. H., Hussman, J. P., & Pericak-Vance, M. (2007). Autism in African American families: clinical-phenotypic findings. American Journal of Medical Genetics Part B: Neuropsychiatric Genetics, 144B(8), 1022–1026. CrossRef Cuccaro, M. L., Brinkley, J., Abramson, R. K., Hall, A., Wright, H. H., Hussman, J. P., & Pericak-Vance, M. (2007). Autism in African American families: clinical-phenotypic findings. American Journal of Medical Genetics Part B: Neuropsychiatric Genetics, 144B(8), 1022–1026. CrossRef
go back to reference Dawson, G., Rogers, S., Munson, J., Smith, M., Winter, J., Greenson, J., & Varley, J. (2010). Randomized, controlled trial of an intervention for toddlers with autism: The early start Denver model. Pediatrics, 125(1), e17–e23. doi: 10.​1542/​peds.​2009-0958. CrossRefPubMed Dawson, G., Rogers, S., Munson, J., Smith, M., Winter, J., Greenson, J., & Varley, J. (2010). Randomized, controlled trial of an intervention for toddlers with autism: The early start Denver model. Pediatrics, 125(1), e17–e23. doi: 10.​1542/​peds.​2009-0958. CrossRefPubMed
go back to reference Gourdine, R., Baffour, T., & Teasley, M. (2011). Autism and the African American community. Social Work in Public Health, 26(4), 454–470. CrossRefPubMed Gourdine, R., Baffour, T., & Teasley, M. (2011). Autism and the African American community. Social Work in Public Health, 26(4), 454–470. CrossRefPubMed
go back to reference Grinker, R., Yeargin-Allsopp, M., & Boyle, C. (2011). Culture and autism spectrum disorders: The impact on prevalence and recognition. In D. Amaral, G. Dawson, & D. Geschwind (Eds.), autism spectrum disorders (pp. 112–136). New York, NY: Oxford University Press. CrossRef Grinker, R., Yeargin-Allsopp, M., & Boyle, C. (2011). Culture and autism spectrum disorders: The impact on prevalence and recognition. In D. Amaral, G. Dawson, & D. Geschwind (Eds.), autism spectrum disorders (pp. 112–136). New York, NY: Oxford University Press. CrossRef
go back to reference Jacobs, L., Lawlor, M., & Mattingly, C. (2011). I/we narratives among African American families raising children with special needs. Culture, Medicine and Psychiatry, 35(1), 3–25. CrossRefPubMed Jacobs, L., Lawlor, M., & Mattingly, C. (2011). I/we narratives among African American families raising children with special needs. Culture, Medicine and Psychiatry, 35(1), 3–25. CrossRefPubMed
go back to reference Jarquin, V., Wiggins, L., Schieve, L., & Van Naarden-Braun, K. (2011). Racial disparities in community identification of autism spectrum disorders over time; metropolitan Atlanta, Georgia, 2000–2006. Journal of Developmental and Behavioral Pediatrics, 32(3), 179–187. CrossRefPubMed Jarquin, V., Wiggins, L., Schieve, L., & Van Naarden-Braun, K. (2011). Racial disparities in community identification of autism spectrum disorders over time; metropolitan Atlanta, Georgia, 2000–2006. Journal of Developmental and Behavioral Pediatrics, 32(3), 179–187. CrossRefPubMed
go back to reference Kennedy, B. R., Mathis, C. C., & Woods, A. K. (2007). African Americans and their distrust of the health care system: Healthcare for diverse populations. J Cult Divers, 14(2), 56–60. PubMed Kennedy, B. R., Mathis, C. C., & Woods, A. K. (2007). African Americans and their distrust of the health care system: Healthcare for diverse populations. J Cult Divers, 14(2), 56–60. PubMed
go back to reference Leininger, M., & McFarland, M. R. (Eds.). (2002). Transcultural nursing: Concepts, theories, research, and practice (3rd ed.). New York: McGraw-Hill Medical Publishing Division. Leininger, M., & McFarland, M. R. (Eds.). (2002). Transcultural nursing: Concepts, theories, research, and practice (3rd ed.). New York: McGraw-Hill Medical Publishing Division.
go back to reference Leininger, M., & McFarland, M. (2006). Culture care diversity and universality: A worldwide nursing theory (2nd ed.). Sudbury, MA: Jones & Bartlett Publishers. Leininger, M., & McFarland, M. (2006). Culture care diversity and universality: A worldwide nursing theory (2nd ed.). Sudbury, MA: Jones & Bartlett Publishers.
go back to reference 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. doi: 10.​1097/​DBP.​0b013e318165c7a0​. CrossRefPubMed 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. doi: 10.​1097/​DBP.​0b013e318165c7a0​. CrossRefPubMed
go back to reference Lord, C., & Bishop, S. (2010). Autism spectrum disorders: Diagnosis, prevalence, and services for children and families. Society for Research in Child Development, 24(2), 1–21. Lord, C., & Bishop, S. (2010). Autism spectrum disorders: Diagnosis, prevalence, and services for children and families. Society for Research in Child Development, 24(2), 1–21.
go back to reference Magana, S., Parish, S., Rose, R., Timberlake, M., & Swaine, J. (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. doi: 10.​1352/​1934-9556-50.​4.​287. CrossRefPubMed Magana, S., Parish, S., Rose, R., Timberlake, M., & Swaine, J. (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. doi: 10.​1352/​1934-9556-50.​4.​287. CrossRefPubMed
go back to reference Mandell, D., Ittenbach, R. F., Levy, S. E., & Pinto-Martin, J. A. (2007). Disparities in diagnoses received prior to a diagnosis of autism spectrum disorder. Journal of Autism and Developmental Disorders, 37(9), 1795–1802. PubMedCentralCrossRefPubMed Mandell, D., Ittenbach, R. F., Levy, S. E., & Pinto-Martin, J. A. (2007). Disparities in diagnoses received prior to a diagnosis of autism spectrum disorder. Journal of Autism and Developmental Disorders, 37(9), 1795–1802. PubMedCentralCrossRefPubMed
go back to reference Mandell, D., 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. CrossRefPubMed Mandell, D., 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. CrossRefPubMed
go back to reference Mandell, D., & Novak, M. (2005). The role of culture in families’ treatment decisions for children with autism spectrum disorders. Ment Retard Dev Disabil Res Rev, 11(2), 110–115. CrossRefPubMed Mandell, D., & Novak, M. (2005). The role of culture in families’ treatment decisions for children with autism spectrum disorders. Ment Retard Dev Disabil Res Rev, 11(2), 110–115. CrossRefPubMed
go back to reference Mandell, D., Novak, M., & Zubristsky, C. (2005). Factors associated with the age of diagnosis among children with autism spectrum disorders. Pediatrics, 116(6), 1480–1486. PubMedCentralCrossRefPubMed Mandell, D., Novak, M., & Zubristsky, C. (2005). Factors associated with the age of diagnosis among children with autism spectrum disorders. Pediatrics, 116(6), 1480–1486. PubMedCentralCrossRefPubMed
go back to reference Mandell, D., 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. PubMedCentralCrossRefPubMed Mandell, D., 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. PubMedCentralCrossRefPubMed
go back to reference Manning-Courtney, P., Murray, D., Currans, K., Johnson, H., Bing, N., Kroeger-Geoppinger, K., & Messerschmidt, T. (2013). Autism spectrum disorders. Current Problems in Pediatric and Adolescent Health Care, 43(1), 2–11. CrossRefPubMed Manning-Courtney, P., Murray, D., Currans, K., Johnson, H., Bing, N., Kroeger-Geoppinger, K., & Messerschmidt, T. (2013). Autism spectrum disorders. Current Problems in Pediatric and Adolescent Health Care, 43(1), 2–11. CrossRefPubMed
go back to reference McAdoo, H. (Ed.). (2007). Black families (4th ed.). Thousand Oaks, CA: SAGE. McAdoo, H. (Ed.). (2007). Black families (4th ed.). Thousand Oaks, CA: SAGE.
go back to reference McFarland, M., & Wehbe-Alamah, H. (2015). Leininger’s culture care diversity and universality: A worldwide nursing theory (3rd ed.). Burlington, MA: Jones & Bartlett. McFarland, M., & Wehbe-Alamah, H. (2015). Leininger’s culture care diversity and universality: A worldwide nursing theory (3rd ed.). Burlington, MA: Jones & Bartlett.
go back to reference Morris, E. (2012). Respect, protection, faith, and love: Major care constructs identified within the subculture of selected urban African American adolescent gang members. Journal of Transcultural Nursing,. doi: 10.​1177/​1043659612441014​. PubMed Morris, E. (2012). Respect, protection, faith, and love: Major care constructs identified within the subculture of selected urban African American adolescent gang members. Journal of Transcultural Nursing,. doi: 10.​1177/​1043659612441014​. PubMed
go back to reference Peters, M. F. (2007). Parenting of young children in Black families. In H. P. McAdoo (Ed.), Black families (4th ed., pp. 203–218). Thousand Oaks, CA: SAGE. CrossRef Peters, M. F. (2007). Parenting of young children in Black families. In H. P. McAdoo (Ed.), Black families (4th ed., pp. 203–218). Thousand Oaks, CA: SAGE. CrossRef
go back to reference Rogers, S. J., & Vismara, L. A. (2008). Evidence-based comprehensive treatments for early autism. Journal of Clinical Child and Adolescent Psychology, 37(1), 8–38. PubMedCentralCrossRefPubMed Rogers, S. J., & Vismara, L. A. (2008). Evidence-based comprehensive treatments for early autism. Journal of Clinical Child and Adolescent Psychology, 37(1), 8–38. PubMedCentralCrossRefPubMed
go back to reference Rosenberg, R. E., Landa, R., Law, J. K., Stuart, E. A., & Law, P. A. (2011). Factors affecting age at initial autism spectrum disorder diagnosis in a national survey. Autism Research & Treatment,. doi: 10.​1155/​2011/​874619. Rosenberg, R. E., Landa, R., Law, J. K., Stuart, E. A., & Law, P. A. (2011). Factors affecting age at initial autism spectrum disorder diagnosis in a national survey. Autism Research & Treatment,. doi: 10.​1155/​2011/​874619.
go back to reference Ruble, L. A., Heflinger, C. A., Renfrew, J. W., & Saunders, R. C. (2005). Access and service use by children with autism spectrum disorders in Medicaid managed care. Journal of Autism and Developmental Disorders, 35(1), 3–13. CrossRefPubMed Ruble, L. A., Heflinger, C. A., Renfrew, J. W., & Saunders, R. C. (2005). Access and service use by children with autism spectrum disorders in Medicaid managed care. Journal of Autism and Developmental Disorders, 35(1), 3–13. CrossRefPubMed
go back to reference Schonfeld, D. J., & Manning-Courtney, P. (2007). Looking ahead to even more discoveries in autism spectrum disorder while addressing current needs. Archives of Pediatrics Adolescent Medicine, 161(4), 412–413. CrossRef Schonfeld, D. J., & Manning-Courtney, P. (2007). Looking ahead to even more discoveries in autism spectrum disorder while addressing current needs. Archives of Pediatrics Adolescent Medicine, 161(4), 412–413. CrossRef
go back to reference Smedley, B. D., Stith, A. Y., & Nelson, A. R. (2002). Institute of medicine report on unequal treatment: Confronting racial and ethnic disparities in health care. (Institute of Medicine Report No. 978-0-309-08265-5). Washington, D.C.: National Academies Press. Smedley, B. D., Stith, A. Y., & Nelson, A. R. (2002). Institute of medicine report on unequal treatment: Confronting racial and ethnic disparities in health care. (Institute of Medicine Report No. 978-0-309-08265-5). Washington, D.C.: National Academies Press.
go back to reference Thomas, P., Zahorodny, W., Peng, B., Kim, S., Jani, N., Halperin, W., & Brimacombe, M. (2012). The association of autism diagnosis with socioeconomic status. Autism: The International Journal of Research and Practice, 16(2), 201–213. CrossRef Thomas, P., Zahorodny, W., Peng, B., Kim, S., Jani, N., Halperin, W., & Brimacombe, M. (2012). The association of autism diagnosis with socioeconomic status. Autism: The International Journal of Research and Practice, 16(2), 201–213. CrossRef
go back to reference Thurston, I., & Phares, V. (2008). Mental health service utilization among African American and Caucasian mothers and fathers. Journal of Consulting and Clinical Psychology, 76(6), 1058–1067. doi: 10.​1037/​a0014007. CrossRefPubMed Thurston, I., & Phares, V. (2008). Mental health service utilization among African American and Caucasian mothers and fathers. Journal of Consulting and Clinical Psychology, 76(6), 1058–1067. doi: 10.​1037/​a0014007. CrossRefPubMed
go back to reference Wiggins, L., Baio, J., Schieve, L., Lee, L., Nicholas, J., & Rice, C. (2012). Retention of autism spectrum diagnoses by community professionals: Findings from the autism and developmental disabilities monitoring network, 2000 and 2006. Journal of Developmental and Behavioral Pediatrics, 33(5), 387–395. PubMedCentralCrossRefPubMed Wiggins, L., Baio, J., Schieve, L., Lee, L., Nicholas, J., & Rice, C. (2012). Retention of autism spectrum diagnoses by community professionals: Findings from the autism and developmental disabilities monitoring network, 2000 and 2006. Journal of Developmental and Behavioral Pediatrics, 33(5), 387–395. PubMedCentralCrossRefPubMed
go back to reference Yeargin-Allsopp, M., Rice, C., Karapurkar, T., Doernberg, N., Boyle, C., & Murphy, C. (2003). Prevalence of autism in a US metropolitan area. JAMA: The Journal of the American Medical Association, 289(1), 49–55. CrossRefPubMed Yeargin-Allsopp, M., Rice, C., Karapurkar, T., Doernberg, N., Boyle, C., & Murphy, C. (2003). Prevalence of autism in a US metropolitan area. JAMA: The Journal of the American Medical Association, 289(1), 49–55. CrossRefPubMed
Metagegevens
Titel
African American Families on Autism Diagnosis and Treatment: The Influence of Culture
Auteurs
Karen Burkett
Edith Morris
Patricia Manning-Courtney
Jean Anthony
Donna Shambley-Ebron
Publicatiedatum
09-06-2015
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 10/2015
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-015-2482-x