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Journal of Autism and Developmental Disorders

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Gepubliceerd in:

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

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.

vorige artikel Erratum to: Defining Treatment Response and Symptom Remission for Anxiety Disorders in Pediatric Autism Spectrum Disorders Using the Pediatric Anxiety Rating Scale

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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.

Barton, M., Dumont-Mathieu, T., & Fein, D. (2012). Screening young children for autism spectrum disorders in primary practice. Journal of Autism and Developmental Disorders, 42(6), 1165–1174. doi: 10.1007/s10803-011-1343-5. CrossRefPubMed

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

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

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

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.

Burkett, K. W., & Morris, E. J. (2014). Enabling trust in qualitative research with culturally diverse participants. Journal of Pediatric Health Care,. doi: 10.1016/j.pedhc.2014.06.002. PubMed

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

Carr, T., & Lord, C. (2012). Longitudinal study of perceived negative impact in African American and Caucasian mothers of children with autism spectrum disorder. Autism,. doi: 10.1177/1362361311435155. PubMed

Clark, L. (2014). A humanizing gaze for transcultural nursing research will tell the story of health disparities. Journal of Transcultural Nursing,. doi: 10.1177/1043659613515722. PubMedCentral

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

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

Fountain, C., King, M. D., & Bearman, P. S. (2011). Age of diagnosis for autism: Individual and community factors across 10 birth cohorts. Journal of Epidemiology and Community Health, 65(6), 503–510. doi: 10.1136/jech.2009.104588. PubMedCentralCrossRefPubMed

Gallagher, A. (2014). Learning from Tuskegee: From moral outrage to integrative ethics. Nursing Ethics, 21(2), 125–126. doi: 10.1177/0969733014523106. CrossRefPubMed

Gourdine, R., Baffour, T., & Teasley, M. (2011). Autism and the African American community. Social Work in Public Health, 26(4), 454–470. CrossRefPubMed

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

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

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

Kalb, L. G., Freedman, B., Foster, C., Menon, D., Landa, R., Kishfy, L., & Law, P. (2012). Determinants of appointment absenteeism at an outpatient pediatric autism clinic. Journal of Developmental and Behavioral Pediatrics, 33(9), 685–697. doi: 10.1097/DBP.0b013e31826c66ef. CrossRefPubMed

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

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. (2006). Culture care diversity and universality: A worldwide nursing theory (2nd ed.). Sudbury, MA: Jones & Bartlett Publishers.

Lewis, L. M., Hankin, S., Reynolds, D., & Ogedegbe, G. (2007). African American spirituality: A process of honoring god, others, and self. Journal of Holistic Nursing, 25(1), 16–23. doi: 10.1177/0898010106297689. 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

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.

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

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., 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., Morales, K. H., Xie, M., Lawer, L. J., Stahmer, A. C., & Marcus, S. C. (2010a). Age of diagnosis among Medicaid-enrolled children with autism, 2001-2004. Psychiatric Services, 61(8), 822–829. doi: 10.1176/appi.ps.61.8.822. PubMedCentralCrossRefPubMed

Mandell, D., Morales, K. H., Xie, M., Polsky, D., Stahmer, A., & Marcus, S. C. (2010b). County-level variation in the prevalence of Medicaid-enrolled children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 40(10), 1241–1246. doi: 10.1007/s10803-010-0982-2. PubMedCentralCrossRefPubMed

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., & Zubristsky, C. (2005). Factors associated with the age of diagnosis among children with autism spectrum disorders. Pediatrics, 116(6), 1480–1486. 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

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

McAdoo, H. (Ed.). (2007). Black families (4th ed.). Thousand Oaks, CA: SAGE.

McFarland, M., & Wehbe-Alamah, H. (2015). Leininger’s culture care diversity and universality: A worldwide nursing theory (3rd ed.). Burlington, MA: Jones & Bartlett.

Montes, G., & Halterman, J. (2011). White-Black disparities in family-centered care among children with autism in the United States: Evidence from the NS-CSHCN 2005–2006. Academic Pediatrics, 11(4), 297–304. doi: 10.1016/j.acap.2011.02.002. CrossRefPubMed

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

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

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

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.

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

Sansosti, F. J., Lavik, K. B., & Sansosti, J. M. (2012). Family experiences through the autism diagnostic process. Focus on Autism and Other Developmental Disabilities, 27(2), 81–92. doi: 10.1177/1088357612446860. 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

Shattuck, P. T., Grosse, S., Parish, S., & Bier, D. (2009). Utilization of a Medicaid-funded intervention for children with autism. Psychiatric Services, 60(4), 549–552. doi: 10.1176/appi.ps.60.4.549. CrossRefPubMed

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.

Solomon, O., & Lawlor, M. C. (2013). “And I look down and he is gone”: Narrating autism, elopement and wandering in Los Angeles. Social Science and Medicine, 94, 106–114. doi: 10.1016/j.socscimed.2013.06.034. PubMedCentralCrossRefPubMed

Tek, S., & Landa, R. (2012). Differences in autism symptoms between minority and non-minority toddlers. Journal of Autism and Developmental Disorders, 42(9), 1967–1973. doi: 10.1007/s10803-012-1445-8. PubMedCentralCrossRefPubMed

Thomas, S. B., Quinn, S. C., Butler, J., Fryer, C. S., & Garza, M. A. (2011). Toward a fourth generation of disparities research to achieve health equity. Annual Review of Public Health, 32(1), 399–416. doi: 10.1146/annurev-publhealth-031210-101136. PubMedCentralCrossRefPubMed

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

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

Tyson, S. Y. (2007). Can cultural competence be achieved without attending to racism? Issues in Mental Health Nursing, 28, 1341–1344. doi: 10.1080/01612840701686518. CrossRefPubMed

Valicenti-McDermott, M., Hottinger, K., Seijo, R., & Shulman, L. (2012). Age at diagnosis of autism spectrum disorders. The Journal of Pediatrics, 161(3), 554–556. doi: 10.1016/j.jpeds.2012.05.012. CrossRefPubMed

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

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

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

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