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Gepubliceerd in:

08-05-2017 | Original Paper

Service Delivery Outcomes in ASD: Role of Parent Education, Empowerment, and Professional Partnerships

Auteurs: Karís A. Casagrande, Brooke R. Ingersoll

Gepubliceerd in: Journal of Child and Family Studies | Uitgave 9/2017

Abstract

Children with Autism Spectrum Disorder (ASD) utilize a greater number of healthcare services compared to children with other developmental disabilities. Despite this, children with ASD remain at high risk for unmet service needs, which are compounded by differences in socioeconomic status (SES). Both empowerment and parent-professional partnership play a role in service outcomes and may be especially important in understanding these service disparities. Our goal was to better understand the contributions of these variables to service disparities in families of children with ASD. Two-hundred forty-nine parents of children with ASD between the ages of 3 and 20 participated in this online survey. Results support previous research highlighting high levels of unmet needs that are exacerbated by differences in parent education, a common indicator of SES. Empowerment and parent-professional partnership also predicted service delivery outcomes. While high quality partnership predicted greater service adequacy, empowerment was inversely related to services. Furthermore, an interaction found that highly empowered families experiencing poor quality partnerships reported worse service delivery outcomes, while empowerment was not a factor in services for families experiencing high quality partnerships. Parent-professional partnership partially mediated the relationship between parent education and service delivery outcomes. As such, increasing parent-professional partnerships through family-centered care and professional training may help to reduce education-related service disparities and improve satisfaction with care for families and children with ASD.

vorige artikel Longitudinal Evaluation of the Role of Academic and Social Impairment and Parent-Adolescent Conflict in the Development of Depression in Adolescents with ADHD

volgende artikel Assessing Coparenting Relationships in Daily Life: The Daily Coparenting Scale (D-Cop)

Aguinis, H., & Whitehead, R. (1997). Sampling variance in the correlation coefficient under indirect range restriction: Implications for validity generalization. Journal of Applied Psychology, 82(4), 528–538. CrossRef

Aiken, L. S., & West, S. G. (1991). Multiple regression: Testing and interpreting interactions. Sage.

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders. 5th edn. Washington, DC: American Psychiatric Association. CrossRef

Bickman, L., Heflinger, C., Northrup, D., Sonnichsen, S., & Schilling, S. (1998). Long term outcomes to family caregiver empowerment. Journal of Child and Family Studies, 7(3), 269–282. CrossRef

Brachlow, A. E., Ness, K. K., McPheeters, M. L., & Gurney, J. G. (2007). Comparison of indicators for a primary care medical home between children with autism or asthma and other special health care needs. Archives of Pediatric and Adolescent Medicine, 161(4), 399–405. CrossRef

Bradley, R. H., & Corwyn, R. F. (2002). Socioeconomic status and child development. Annual Review of Psychology, 53(1), 371–399. CrossRefPubMed

Burke, M. M., & Goldman, S. E. (2015). Identifying the associated factors of mediation and due process in families of students with autism spectrum disorder. Journal of Autism and Developmental Disorders, 45(5), 1345–1353. CrossRefPubMed

Chiri, G., & Warfield, M. E. (2012). Unmet need and problems accessing core health care services for children with autism spectrum disorder. Maternal and Child Health Journal, 16(5), 1081–1091. CrossRefPubMed

Dawson, G. (2008). Early behavioral intervention, brain plasticity, and the prevention of autism spectrum disorder. Development and Psychopathology, 20(3), 775–803. CrossRefPubMed

Dempsey, I., & Dunst, C. J. (2004). Helpgiving styles and parent empowerment in families with a young child with a disability. Journal of Intellectual and Developmental Disability, 29(1), 40–51. CrossRef

Dempsey, I., & Foreman, P. (1997). Toward a clarification of empowerment as an outcome of disability service provision. International Journal of Disability, Development, and Education, 44(4), 287–303. CrossRef

Denboba, D., McPherson, M. G., Kenney, M. K., Strickland, B., & Newacheck, P. W. (2006). Achieving family and provider partnerships for children with special health care needs. Pediatrics, 118(4), 1607–1615. CrossRefPubMed

Dunst, C. J., Boyd, K., Trivette, C. M., & Hamby, D. W. (2002). Family‐oriented program models and professional helpgiving practices. Family Relations, 51(3), 221–229. CrossRef

Dunst, C. J., Trivette, C. M., & Hamby, D. W. (2007). Meta‐analysis of family‐centered helpgiving practices research. Developmental Disabilities Research Reviews, 13(4), 370–378. CrossRef

Durkin, M. S., Maenner, M. J., Meaney, F. J., Levy, S. E., DiGuiseppi, C., & Nicholas, J. S., et al. (2010). Socioeconomic inequality in the prevalence of autism spectrum disorder: Evidence from a US cross-sectional study. PLoS ONE, 5(7), 1–8. CrossRef

Ejiogu, N., Norbeck, J. H., Mason, M. A., Cromwell, B. C., Zonderman, A. B., & Evans, M. K. (2011). Recruitment and retention strategies for minority or poor clinical research participants: Lessons from the healthy aging in neighborhoods of diversity across the life span study. The Gerontologist, 51(suppl 1), S33–S45. CrossRefPubMedPubMedCentral

van Eys, P., & McLaughlin, J. (2002). Autism services proposal for the Tennessee legislature: SJR 567. http://kc.vanderbilt.edu/kennedy_files/autismservicesproposal12-23-2002.pdf.

Fritz, M. S., Taylor, A. B., & MacKinnon, D. P. (2012). Explanation of two anomalous results in statistical mediation analysis. Multivariate Behavioral Research, 47(1), 61–87. CrossRefPubMedPubMedCentral

Guerrero, A. D., Chen, J., Inkelas, M., Rodriguez, H. P., & Ortega, A. N. (2010). Racial and ethnic disparities in pediatric experiences of family-centered care. Medical Care, 48(4), 388–393. CrossRefPubMed

Gurney, J. G., McPheeters, M. L., & Davis, M. M. (2006). Parental report of health conditions and health care use among children with and without autism: National survey of children’s health. Archives of Pediatrics & Adolescent Medicine, 160(8), 825–830. CrossRef

Hayes, A. F. (2013). Introduction to mediation, moderation, and conditional process analysis: A regression-based approach. New York, NY: Guilford Press.

Hayes, A. F., & Scharkow, M. (2013). The relative trustworthiness of inferential tests of the indirect effect in statistical mediation analysis does method really matter? Psychological Science, 24(10), 1918–1927. CrossRefPubMed

Hodgetts, S., Zwaigenbaum, L., & Nicholas, D. (2014). Profile and predictors of service needs for families of children with autism spectrum disorders. Autism, 19(6), 673–683. CrossRefPubMed

Koegel, R. L., Schreibman, L., Loos, L. M., Dirlich-Wilhelm, H., Dunlap, G., Robbins, F. R., & Plienis, A. J. (1992). Consistent stress profiles in mothers of children with autism. Journal of Autism and Developmental Disorders, 22(2), 205–216. CrossRefPubMed

Kogan, M. D., Strickland, B. B., Blumberg, S. J., Singh, G. K., Perrin, J. M., & van Dyck, P. C. (2008). A national profile of the health care experiences and family impact on autism spectrum disorder among children in the United States. Pediatrics, 122(6), e1149–e1157. CrossRefPubMed

Koren, P. E., Dechillo, N., & Friesen, B. J. (1992). Measuring empowerment in families whose children have emotional disabilities: A brief questionnaire. Rehabilitation Psychology, 37(4), 305–321. CrossRef

Krauss, M. W., Gulley, S., Sciegaj, M., & Wells, N. (2003). Access to specialty medical care for children with mental retardation, autism, and other special health care needs. Mental Retardation, 41(5), 329–339. CrossRefPubMed

Krieger, N., Williams, D. R., & Moss, N. E. (1997). Measuring social class in US public health research: Concepts, methodologies, and guidelines. Annual Review of Public Health, 18, 341–378. CrossRefPubMed

Krug, D. A., Arick, J. R., & Almond, P. J. (1980). Behavior checklist for identifying severely handicapped individuals with high levels of autistic behavior. Journal of Child Psychology and Psychiatry, 21(3), 221–229. CrossRefPubMed

Kuo, D. Z., Mac Bird, T., & Tilford, J. M. (2011). Associations of family-centered care with health care outcomes for children with special health care needs. Maternal and Child Health Journal, 15(6), 794–805. CrossRefPubMed

Kuo, D. Z., Houtrow, A. J., Arango, P., Kuhlthau, K. A., Simmons, J. M., & Neff, J. M. (2012). Family-centered care: Current applications and future directions in pediatric health care. Maternal and Child Health Journal, 16(2), 297–305. CrossRefPubMed

Lee, L. C., Harrington, R. A., Louie, B. B., & Newschaffer, C. J. (2008). Children with autism: Quality of life and parental concerns. Journal of Autism and Developmental Disorders, 38(6), 1147–1160. 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 & Behavioral Pediatrics, 29(3), 152–160. CrossRef

Liptak, G. S., Orlando, M., Yingling, J. T., Theurer-Kaufman, K. L., Malay, D. P., Tompkins, L. A., & Flynn, J. R. (2006). Satisfaction with primary health care received by families of children with developmental disabilities. Journal of Pediatric Health Care, 20(4), 245–252. CrossRefPubMed

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. CrossRefPubMed

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. CrossRefPubMed

Mandell, D. S., & Salzer, M. S. (2007). Who joins support groups among parents of children with autism? Autism, 11(2), 111–122. CrossRefPubMedPubMedCentral

Matson, J. L., Wilkins, J., & Macken, J. (2008). The relationship of challenging behaviors to severity and symptoms of autism spectrum disorders. Journal of Mental Health Research in Intellectual Disabilities, 2(1), 29–44. CrossRef

Mayes, S. D., & Calhoun, S. L. (2011). Impact of IQ, age, SES, gender, and race on autistic symptoms. Research in Autism Spectrum Disorders, 5(2), 749–757. CrossRef

Montes, G., & Halterman, J. S. (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. CrossRefPubMed

Montes, G., Halterman, J. S., & Magyar, C. I. (2009). Access to and satisfaction with school and community health services for US children with ASD. Pediatrics, 124(Supplement 4), S407–S413. CrossRefPubMed

Murphy, M. A., & Ruble, L. A. (2012). A comparative study of rurality and urbanicity on access to and satisfaction with services for children with autism spectrum disorders. Rural Special Education Quarterly, 31(3), 3–11. CrossRef

Murray, M. M., Ackerman-Spain, K., Williams, E. U., & Ryley, A. T. (2011). Knowledge is power: Empowering the autism community through parent-professional training. The School Community Journal, 21(1), 19–36.

Ngui, E. M., & Flores, G. (2006). Satisfaction with care and ease of using health care services among parents of children with special health care needs: The roles of race/ethnicity, insurance, language, and adequacy of family-centered care. Pediatrics, 117(4), 1184–1196. CrossRefPubMed

Parish, S., Magaña, S., Rose, R., Timberlake, M., & Swaine, J. G. (2012). Health care of Latino children with autism and other developmental disabilities: Quality of provider interaction mediates utilization. American Journal on Intellectual and Developmental Disabilities, 117(4), 304–315. CrossRefPubMed

Patten, E., Baranek, G. T., Watson, L. R., & Schultz, B. (2013). Child and family characteristics influencing intervention choices in autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 28(3), 138–146. CrossRefPubMed

Pickard, K., & Ingersoll, B. (2016). Quality versus quantity: The role of socioeconomic status on parent-reported service knowledge, service use, unmet service needs, and barriers to service use for parents of a child with ASD. Autism, 20(1), 106–115. CrossRefPubMed

Porterfield, S. L., & McBride, T. D. (2007). The effect of poverty and caregiver education on perceived need and access to health services among children with special health care needs. American Journal of Public Health, 97(2), 323–329. CrossRefPubMedPubMedCentral

Resendez, M. G., Quist, R. M., & Matshazi, D. G. M. (2000). A longitudinal analysis of family empowerment and client outcomes. Journal of Child and Family Studies, 9(4), 449–460. CrossRef

Riger, S. (1993). What’s wrong with empowerment. American Journal of Community Psychology, 21(3), 279–292. CrossRef

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

Scheel, M. J., & Rieckmann, T. (1998). An empirically derived description of self-efficacy and empowerment for parents of children identified as psychologically disordered. The American Journal of Family Therapy, 26(1), 15–27. CrossRef

Seltzer, M. M., Greenberg, J. S., Floyd, F. J., Pettee, Y., & Hong, J. (2001). Life course impacts of parenting a child with a disability. American Journal on Mental Retardation, 106(3), 265–286. CrossRefPubMed

Shavers, V. L. (2007). Measurement of socioeconomic status in health disparities research. Journal of the National Medical Association, 99(9), 1013–1023. PubMedPubMedCentral

Siller, M., Reyes, N., Hotez, E., Hutman, T., & Sigman, M. (2013). Longitudinal change in the use of services in autism spectrum disorder: Understanding the role of child characteristics, family demographics, and parent cognitions. Autism, 18(4), 433–446. CrossRefPubMed

Singh, N. N., Curtis, W. J., Ellis, C. R., Nicholson, M. W., Villani, T. M., & Wechsler, H. A. (1995). Psychometric analysis of the family empowerment scale. Journal of Emotional and Behavioral Disorders, 3(2), 85–91. CrossRef

Sperry, L. A., Whaley, K. T., Shaw, E., & Brame, K. (1999). Services for young children with autism spectrum disorder: Voices of parents and providers. Infants & Young Children, 11(4), 17–33. CrossRef

Summers, J. A., Hoffman, L., Marquis, J., Turnbull, A. P., Poston, D., & Nelson, L. L. (2005). Measuring the quality of family-professional partnerships in special education services. Exceptional Children, 72(1), 65–82. CrossRef

Summers, J. A., Marquis, J., Mannan, H., Turnbull, A. P., Fleming, K., Poston, D. J., & Kupzyk, K. (2007). Relationship of perceived adequacy of services, family-professional partnerships, and family quality of life in early childhood service programmes. International Journal of Disability, Development and Education, 54(3), 319–338. CrossRef

Thomas, P., Zahorodny, W., Peng, B., Kim, S., Jani, N., Halperin, W., & Brimacombe, M. (2011). The association of autism diagnosis with socioeconomic status. Autism, 16(2), 201–213. CrossRefPubMed

Tregnago, M. K., & Cheak-Zamora, N. C. (2012). Systematic review of disparities in health care for individuals with autism spectrum disorders in the United States. Research in Autism Spectrum Disorders, 6(3), 1023–1031. CrossRef

Wang, L., Mandell, D. S., Lawer, L., Cidav, Z., & Leslie, D. L. (2013). Healthcare service use and costs for autism spectrum disorder: A comparison between medicaid and private insurance. Journal of Autism and Developmental Disorders, 43(5), 1057–1064. CrossRefPubMedPubMedCentral

Weiss, J. A., Cappadocia, M. C., MacMullin, J. A., Viecili, M., & Lunsky, Y. (2012). The impact of child problem behaviors of children with ASD on parent mental health: The mediating role of acceptance and empowerment. Autism, 16(3), 261–274. CrossRefPubMed

Zuckerman, K. E., Sinche, B., Mejia, A., Cobian, M., Becker, T., & Nicolaidis, C. (2014). Latino parents’ perspectives on barriers to autism diagnosis. Academic Pediatrics, 14(3), 301–308. CrossRefPubMedPubMedCentral

Titel: Service Delivery Outcomes in ASD: Role of Parent Education, Empowerment, and Professional Partnerships
Auteurs: Karís A. Casagrande
Brooke R. Ingersoll
Publicatiedatum: 08-05-2017
Uitgeverij: Springer US
Gepubliceerd in: Journal of Child and Family Studies / Uitgave 9/2017
Print ISSN: 1062-1024
Elektronisch ISSN: 1573-2843
DOI: https://doi.org/10.1007/s10826-017-0759-8

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