Advertisement

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

  • Dasal Tenzin JasharEmail author
  • Deborah Fein
  • Leandra N. Berry
  • Jeffrey D. Burke
  • Lauren E. Miller
  • Marianne L. Barton
  • Thyde Dumont-Mathieu
Original Paper
  • 39 Downloads

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.

Keywords

Autism spectrum disorder Parental satisfaction Diagnostic evaluation Health services research 

Notes

Acknowledgments

This study was funded by the National Institute of Child Health and Human Development, (Grant Number R01HD039961). We would like to thank all the families who participated in our study, and the physicians, clinicians, medical staff, and graduate and undergraduate students who contributed to the study.

Author Contributions

Author DTJ was part of study design development, data collection, data analysis, and writing. Authors DF and TDM were part of study design development, data collection, and writing. Authors LNB, LEM, and MLB were part of study design development and data collection. Author JDB was part of data analysis.

Compliance with Ethical Standards

Conflict of interest

Authors DF and MLB are part owners of the Modified Checklist for Autism in Toddlers. This is provided free of charge to physicians. Royalties are charged when it is incorporated into a commercial system. Research into the MCHAT is currently supported by NICHD (Robins, PI). Authors DTJ, LNB, LEM, and TDM declare that they have no conflict of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from individual participants included in the study.

Supplementary material

10803_2018_3851_MOESM1_ESM.docx (21 kb)
Supplementary material 1 (DOCX 20 KB)
10803_2018_3851_MOESM2_ESM.sav (207 kb)
Supplementary material 2 (SAV 207 KB)
10803_2018_3851_MOESM3_ESM.docx (24 kb)
Supplementary Table 1 (DOCX 23 KB)

References

  1. Abidin, R. R. (1995). Parenting Stress Index, third edition: Professional manual. Odessa: Psychological Assessment Resources, Inc.Google Scholar
  2. 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.CrossRefGoogle Scholar
  3. American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: American Psychiatric Publishing.Google Scholar
  4. American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: American Psychiatric Publishing.Google Scholar
  5. 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.CrossRefGoogle Scholar
  6. Bartolo, P. (2002). Communicating a diagnosis of developmental disability to parents: Multiprofessional negotiation frameworks. Child Care Health and Development, 28(1), 65–71.CrossRefGoogle Scholar
  7. 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.CrossRefGoogle Scholar
  8. 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.CrossRefGoogle Scholar
  9. Brown, J. D., & Wissow, L. S. (2008). Discussion of maternal stress during pediatric primary care visits. Academic Pediatrics, 8(6), 368–374.Google Scholar
  10. 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.CrossRefGoogle Scholar
  11. 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.CrossRefGoogle Scholar
  12. 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.CrossRefGoogle Scholar
  13. Dumont-Mathieu, T., Berry, L. N., Barton, M. L., & Fein, D. (2003). Post-Evaluation Satisfaction Questionnaire (PESQ).Google Scholar
  14. 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.CrossRefGoogle Scholar
  15. 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.CrossRefGoogle Scholar
  16. 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.CrossRefGoogle Scholar
  17. 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.CrossRefGoogle Scholar
  18. 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.CrossRefGoogle Scholar
  19. 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.CrossRefGoogle Scholar
  20. 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.CrossRefGoogle Scholar
  21. 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.CrossRefGoogle Scholar
  22. 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.CrossRefGoogle Scholar
  23. 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.CrossRefGoogle Scholar
  24. 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.CrossRefGoogle Scholar
  25. 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.CrossRefGoogle Scholar
  26. 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.CrossRefGoogle Scholar
  27. Howlin, P., & Moore, A. (1997). Diagnosis in autism: A survey of over 12000 patients in the UK. Autism, 1(2), 135–162.CrossRefGoogle Scholar
  28. Jackson, J. L., Chamberlin, J., & Kroenke, K. (2001). Predictors of patient satisfaction. Social Science & Medicine, 52(4), 609–620.CrossRefGoogle Scholar
  29. Johnson, C., & Myers, S. (2007). Identification and evaluation of children with autism spectrum disorders. Pediatrics, 120(5), 1183–1215.CrossRefGoogle Scholar
  30. 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.CrossRefGoogle Scholar
  31. 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.CrossRefGoogle Scholar
  32. 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.CrossRefGoogle Scholar
  33. 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.Google Scholar
  34. 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.CrossRefGoogle Scholar
  35. 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.CrossRefGoogle Scholar
  36. Midence, K., & O’neill, M. (1999). The experience of parents in the diagnosis of autism. Autism, 3(3), 273–285.CrossRefGoogle Scholar
  37. 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.CrossRefGoogle Scholar
  38. Mullen, E. M. (1995). Mullen Scales of Early Learning. Circle Pines: American Guidance Service.Google Scholar
  39. National Academies of Sciences, Engineering, and Medicine. (2015). Improving diagnosis in health care. Washington, DC: The National Academies Press.Google Scholar
  40. National Research Council. (2001). Educating children with autism. Washington, DC: The National Academies Press.  https://doi.org/10.17226/10017.
  41. 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.CrossRefGoogle Scholar
  42. 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.CrossRefGoogle Scholar
  43. 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.CrossRefGoogle Scholar
  44. 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.CrossRefGoogle Scholar
  45. 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.CrossRefGoogle Scholar
  46. 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.CrossRefGoogle Scholar
  47. 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.CrossRefGoogle Scholar
  48. 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.CrossRefGoogle Scholar
  49. Sparrow, S. S., Balla, D. A., & Cicchetti, D. V. (1984). Vineland Adaptive Behavior Scales. Circle Pines: American Guidance Service.Google Scholar
  50. 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.CrossRefGoogle Scholar
  51. Woods, S., Bivins, R., Oteng, K., & Engel, A. (2005). The influence of ethnicity on patient satisfaction. Ethnicity & Health, 10(3), 235–242.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  • Dasal Tenzin Jashar
    • 1
    • 5
    Email author
  • Deborah Fein
    • 2
  • Leandra N. Berry
    • 3
  • Jeffrey D. Burke
    • 2
  • Lauren E. Miller
    • 2
  • Marianne L. Barton
    • 2
  • Thyde Dumont-Mathieu
    • 4
  1. 1.University of MinnesotaMinneapolisUSA
  2. 2.Department of PsychologyUniversity of ConnecticutStorrsUSA
  3. 3.Department of PediatricsBaylor College of MedicineHoustonUSA
  4. 4.Connecticut Children’s Medical CenterHartfordUSA
  5. 5.Kennedy Krieger InstituteBaltimoreUSA

Personalised recommendations