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03-01-2019 | Original Paper

Parental Perceptions of a Comprehensive Diagnostic Evaluation for Toddlers at Risk for Autism Spectrum Disorder

Auteurs: Dasal Tenzin Jashar, Deborah Fein, Leandra N. Berry, Jeffrey D. Burke, Lauren E. Miller, Marianne L. Barton, Thyde Dumont-Mathieu

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 5/2019

Abstract

Parent satisfaction with neurodevelopmental evaluations may influence the pursuit of intervention. Parent satisfaction with a neurodevelopmental evaluation for toddlers at risk for autism (n = 257; 128 with autism) was examined using the Post-Evaluation Satisfaction Questionnaire, which collected quantitative and qualitative information. Fewer ethnic/racial minority than non-minority parents returned the questionnaire. Factor analysis indicated a one-factor model, Total score, which did not differ significantly by diagnosis, autism severity, child’s cognitive or adaptive delay, family race/ethnicity, maternal education, family annual income, or parental stress. Examination of 24 individual items showed a race/ethnicity difference for only one item; minority parents scored the evaluation as meeting their needs less. Qualitative data stressed the importance of fully explaining diagnoses/recommendations and providing direct and clear feedback.

vorige artikel Temperament Similarities and Differences: A Comparison of Factor Structures from the Behavioral Style Questionnaire in Children with and Without Autism Spectrum Disorder

volgende artikel A Randomised-Controlled Trial of Vitamin D and Omega-3 Long Chain Polyunsaturated Fatty Acids in the Treatment of Core Symptoms of Autism Spectrum Disorder in Children

Alleen toegankelijk voor geautoriseerde gebruikers

Abidin, R. R. (1995). Parenting Stress Index, third edition: Professional manual. Odessa: Psychological Assessment Resources, Inc.

Altiere, M. J., & Von Kluge, S. (2009). Family functioning and coping behaviors in parents of children with autism. Journal of Child and Family Studies, 18(1), 83–92. CrossRef

American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: American Psychiatric Publishing.

American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: American Psychiatric Publishing.

Bairati, I., Meyer, F., Gueye, C. B. D., Desmarais, C., Rouleau, N., & Sylvestre, A. (2011). Factors influencing parent satisfaction with preventive health services for the early detection of speech and language delay in preschool children. Open Journal of Preventive Medicine, 1(03), 135–142. CrossRef

Bartolo, P. (2002). Communicating a diagnosis of developmental disability to parents: Multiprofessional negotiation frameworks. Child Care Health and Development, 28(1), 65–71. CrossRef

Bishop-Fitzpatrick, L., & Kind, A. (2017). A scoping review of health disparities in autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(11), 3380–3391. CrossRefPubMedPubMedCentral

Brogan, C. A., & Knussen, C. (2003). The disclosure of a diagnosis of an autistic spectrum disorder: Determinants of satisfaction in a sample of Scottish parents. Autism, 7(1), 31–46. CrossRefPubMed

Brown, J. D., & Wissow, L. S. (2008). Discussion of maternal stress during pediatric primary care visits. Academic Pediatrics, 8(6), 368–374.

Chiu, Y., Chou, M., Lee, J., Wong, C., Chou, W., Wu, Y., et al. (2014). Determinants of maternal satisfaction with diagnosis disclosure of autism. Journal of the Formosan Medical Association = Taiwan Yi Zhi, 113(8), 540–548. CrossRefPubMed

Daniels, A. M., & Mandell, D. S. (2014). Explaining differences in age at autism spectrum disorder diagnosis: A critical review. Autism: The International Journal of Research and Practice, 18(5), 583–597. CrossRef

Delaney, K. R., & Engels-Scianna, B. (1996). Parents’ perceptions of the child’s emotional illness and psychiatric treatment needs. Journal of Child and Adolescent Psychiatric Nursing, 9(4), 15–24. CrossRefPubMed

Dumont-Mathieu, T., Berry, L. N., Barton, M. L., & Fein, D. (2003). Post-Evaluation Satisfaction Questionnaire (PESQ).

Emerson, N. D., Morrell Holly, E. R., & Neece, C. (2016). Predictors of age of diagnosis for children with autism spectrum disorder: The role of a consistent source of medical care, race, and condition severity. Journal of Autism and Developmental Disorders, 46(1), 127–138. CrossRefPubMed

Fountain, C., King, M., & Bearman, P. (2011). Age of diagnosis for autism: Individual and community factors across 10 birth cohorts. Journal of Epidemiology and Community Health (1979), 65(6), 503–510. CrossRef

Galil, A., Bachner, Y. G., Merrick, J., Flusser, H., Lubetzky, H., Heiman, N., et al. (2006). Physician–parent communication as predictor of parent satisfaction with child development services. Research in Developmental Disabilities: A Multidisciplinary Journal, 27(3), 233–242. CrossRef

Giannoulis, K., Beresford, F., & Davis, H. (2004). The role and value of a pediatric specialist neurodevelopmental diagnostic service: Parental perceptions. Child and Adolescent Mental Health, 9(2), 65–70. CrossRef

Goin-Kochel, R. P., Mackintosh, V. H., & Myers, B. J. (2006). How many doctors does it take to make an autism spectrum diagnosis? Autism: The International Journal of Research & Practice, 10(5), 439–451. CrossRef

Hackett, L., Shaikh, S., & Theodosiou, L. (2009). Parental perceptions of the assessment of autistic spectrum disorders in a tier three service. Child and Adolescent Mental Health, 14(3), 127–132. CrossRef

Hart, C. N., Kelleher, K. J., Drotar, D., & Scholle, S. H. (2007). Parent–provider communication and parental satisfaction with care of children with psychosocial problems. Patient Education and Counseling, 68(2), 179–185. CrossRefPubMedPubMedCentral

Hasnat, M., & Graves, P. (2000). Disclosure of developmental disability: A study of parent satisfaction and the determinants of satisfaction. Journal of Paediatrics and Child Health, 36(1), 32–35. CrossRefPubMed

Hennel, S., Coates, C., Symeonides, C., Gulenc, A., Smith, L., Price, A., et al. (2016). Diagnosing autism: Contemporaneous surveys of parent needs and paediatric practice. Journal of Paediatrics and Child Health, 52(5), 506–511. CrossRefPubMed

Herlihy, L. E., Brooks, B. L., Dumont-Mathieu, T., Barton, M., Fein, D., Chen, C., et al. (2014). Standardized screening facilitates timely diagnosis of autism spectrum disorders in a diverse sample of low-risk toddlers. Journal of Developmental & Behavioral Pediatrics, 35(2), 85–92. CrossRef

Hilton, K., Turner, C., Krebs, G., Volz, C., & Heyman, I. (2012). Parent experiences of attending a specialist clinic for assessment of their child’s obsessive compulsive disorder. Child and Adolescent Mental Health, 17(1), 31–36. CrossRef

Holgado-Tello, F. C., Chacón-Moscoso, S., Barbero-García, I., & Vila-Abad, E. (2010). Polychoric versus Pearson correlations in exploratory and confirmatory factor analysis of ordinal variables. Quality and quantity, 44(1), 153–166. CrossRef

Howlin, P., & Asgharian, A. (1999). The diagnosis of autism and Asperger syndrome: Findings from a survey of 770 families. Developmental Medicine & Child Neurology, 41(12), 834–839. CrossRef

Howlin, P., & Moore, A. (1997). Diagnosis in autism: A survey of over 12000 patients in the UK. Autism, 1(2), 135–162. CrossRef

Jackson, J. L., Chamberlin, J., & Kroenke, K. (2001). Predictors of patient satisfaction. Social Science & Medicine, 52(4), 609–620. CrossRef

Johnson, C., & Myers, S. (2007). Identification and evaluation of children with autism spectrum disorders. Pediatrics, 120(5), 1183–1215. CrossRef

Keenan, M., Dillenburger, K., Doherty, A., Byrne, T., & Gallagher, S. (2010). The experiences of parents during diagnosis and forward planning for children with autism spectrum disorder. Journal of Applied Research in Intellectual Disabilities, 23(4), 390–397. CrossRef

Klein, S., Wynn, K., Ray, L., Demeriez, L., LaBerge, P., Pei, J., et al. (2011). Information sharing during diagnostic assessments: What is relevant for parents? Physical & Occupational Therapy in Pediatrics, 31(2), 120–132. CrossRef

Larsen, D. L., Attkisson, C. C., Hargreaves, W. A., & Nguyen, T. D. (1979). Assessment of client/patient satisfaction: Development of a general scale. Evaluation and Program Planning, 2(3), 197–207. CrossRefPubMed

Ledesma, R. D., & Valero-Mora, P. (2007). Determining the number of factors to retain in EFA: An easy-to-use computer program for carrying out parallel analysis. Practical Assessment, Research & Evaluation, 12(2), 1–11.

MacDonald, R., Parry-Cruwys, D., Dupere, S. & Ahearn, W. (2014). Assessing progress and outcome of early intensive behavioral intervention for toddlers with autism. Research in Developmental Disabilities, 35(12), 3632–3644. CrossRefPubMed

Mansell, W., & Morris, K. (2004). A survey of parents’ reactions to the diagnosis of an autistic spectrum disorder by a local service. Access to information and use of services. Autism: The International Journal of Research and Practice, 8(4), 387–407. CrossRef

Midence, K., & O’neill, M. (1999). The experience of parents in the diagnosis of autism. Autism, 3(3), 273–285. CrossRef

Moh, T. A., & Magiati, I. (2012). Factors associated with parental stress and satisfaction during the process of diagnosis of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 6(1), 293–303. CrossRef

Mullen, E. M. (1995). Mullen Scales of Early Learning. Circle Pines: American Guidance Service.

National Academies of Sciences, Engineering, and Medicine. (2015). Improving diagnosis in health care. Washington, DC: The National Academies Press.

National Research Council. (2001). Educating children with autism. Washington, DC: The National Academies Press. https://doi.org/10.17226/10017.

Newacheck, P., Hung, Y., & Wright, K. K. (2002). Racial and ethnic disparities in access to care for children with special health care needs. Ambulatory Pediatrics, 2(4), 247–254. CrossRefPubMed

Ngui, E., & 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

Osborne, L., McHugh, A., Saunders, L., & Reed, J. (2008). Parenting stress reduces the effectiveness of early teaching interventions for autistic spectrum disorders. Journal of Autism and Developmental Disorders, 38(6), 1092–1103. CrossRefPubMed

Osborne, L. A., & Reed, P. (2008). Parents’ perceptions of communication with professionals during the diagnosis of autism. Autism: The International Journal of Research and Practice, 12(3), 309–324. CrossRef

Robbins, F. R., Dunlap, G., & Plienis, A. J. (1991). Family characteristics, family training, and the progress of young children with autism. Journal of Early Intervention, 15(2), 173–184. CrossRef

Robins, D. L., Casagrande, K., Barton, M., Chen, C. M. A., Dumont-Mathieu, T., & Fein, D. (2014). Validation of the modified checklist for autism in toddlers, revised with follow-up (M-CHAT-R/F). Pediatrics, 133(1), 37–45. CrossRefPubMedPubMedCentral

Robins, D. L., Fein, D., Barton, M. L., & Green, J. A. (2001). The Modified checklist for autism in toddlers: An initial study investigating the early detection of autism and pervasive developmental disorders. Journal of Autism and Developmental Disorders, 31(2), 131–143. CrossRefPubMed

Schopler, E., Reichler, R. J., DeVellis, R. F., & Daly, K. (1980). Toward objective classification of childhood autism: Childhood Autism Rating Scale (CARS). Journal of Autism and Developmental Disorders, 10(1), 91–103. CrossRefPubMed

Sparrow, S. S., Balla, D. A., & Cicchetti, D. V. (1984). Vineland Adaptive Behavior Scales. Circle Pines: American Guidance Service.

Thomas, K. C., Ellis, A. R., McLaurin, C., Daniels, J., & Morrissey, J. P. (2007). Access to care for autism-related services. Journal of Autism and Developmental Disorders, 37(10), 1902–1912. CrossRefPubMed

Woods, S., Bivins, R., Oteng, K., & Engel, A. (2005). The influence of ethnicity on patient satisfaction. Ethnicity & Health, 10(3), 235–242. CrossRef

Titel: Parental Perceptions of a Comprehensive Diagnostic Evaluation for Toddlers at Risk for Autism Spectrum Disorder
Auteurs: Dasal Tenzin Jashar
Deborah Fein
Leandra N. Berry
Jeffrey D. Burke
Lauren E. Miller
Marianne L. Barton
Thyde Dumont-Mathieu
Publicatiedatum: 03-01-2019
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 5/2019
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-018-3851-z

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