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Parental Perception of Quality of Life for Children with Autism Spectrum Disorder

  • Judith Cholewicki
  • Erik Drasgow
  • Laura C. ChezanEmail author
ORIGINAL ARTICLE
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Abstract

Our purpose for this study was to investigate how parents of children with Autism Spectrum Disorder (ASD) rate their child’s quality of life (QOL). We began by developing a parent proxy-report QOL assessment instrument with subscales and then distributed it statewide to parents of children with ASD. The scale demonstrated strong internal consistency with a full-scale Cronbach’s alpha of .835. Our results indicated that 0% of the parents rated their child as having a poor QOL, 66% rated their child as having a good QOL, and 16% rated their child as having an excellent QOL. Our results support the notion that QOL can be assessed in early childhood to develop and ensure effective programing across the lifespan for an individual with ASD.

Keywords

Quality of life Children Autism Spectrum Disorder Assessment 

Notes

Compliance with Ethical Standards

Ethical Approval

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

Informed Consent

We obtained informed consent for this web-based survey research by including an introductory paragraph on a web page that contained (a) the elements of required consent and (b) a link to the survey site for those individuals who voluntarily desired to participate.

Conflict of Interest

The authors declare that they have no conflicts of interest.

References

  1. Allik, H., Larsson, J. O., & Smedje, H. (2006). Health-related quality of life in parents of school-age children with Asperger syndrome or high-functioning autism. Health and Quality of Life Outcomes, 4, 1–8.  https://doi.org/10.1186/1477-7525-4-1.CrossRefPubMedCentralGoogle Scholar
  2. American Psychiatric Association. Task Force on DSM-5. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington: American Psychiatric Association.CrossRefGoogle Scholar
  3. Baio, J. (2012). Prevalence of Autism Spectrum Disorders: Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008. Morbidity and Mortality Weekly Report. Surveillance Summaries. Volume 61, Number 3. Centers for Disease Control and Prevention.Google Scholar
  4. Billstedt, E., Gillberg, C., & Gillberg, C. (2005). Autism after adolescence: Population-based 13- to 22-year follow-up study of 120 individuals with autism diagnosed in childhood. Journal of Autism and Developmental Disorders, 35, 351–360.  https://doi.org/10.1007/s10803-005-3302-5.CrossRefGoogle Scholar
  5. Billstedt, E., Gillberg, I. C., & Gillberg, C. (2011). Aspects of quality of life in adults diagnosed with autism in childhood: A population-based study. Autism, 15, 7–20.  https://doi.org/10.1177/1362361309346066.CrossRefGoogle Scholar
  6. Burgess, A. F., & Gutstein, S. E. (2007). Quality of life for people with autism: Raising the standard for evaluating successful outcomes. Child and Adolescent Mental Health, 12, 80–86.  https://doi.org/10.1111/j.1475-3588.2006.00432.x.CrossRefGoogle Scholar
  7. Callahan, K., Henson, R. K., & Cowan, A. K. (2008). Social validation of evidence-based practices in autism by parents, teachers, and administrators. Journal of Autism and Developmental Disorders, 38, 678–692.  https://doi.org/10.1007/s10803-007-0434-9.CrossRefGoogle Scholar
  8. Caron, J., Corbiere, M., Mercier, C., Diaz, P., Ricard, N., & Lesage, A. (2006). The construct validity of the client questionnaire of the Wisconsin quality of life index – A cross-validation study. International Journal of Methods in Psychiatric Research, 12, 128–138.  https://doi.org/10.1002/mpr.149.CrossRefGoogle Scholar
  9. Coghill, D., Danckaerts, M., Sonuga-Barke, E., & Sergeant, J. (2009). Practitioner review: Quality of life in child mental health-conceptual challenges and practical choices. Journal of Child Psychology and Psychiatry, 50, 544–561.  https://doi.org/10.1111/j.1469-7610.2009.02008.x.CrossRefGoogle Scholar
  10. Cummings, R. A., McCabe, M. P., Romeo, Y., & Gullone, E. (1994). Validity studies the comprehensive quality of life scale (Comqol): Instrument development and psychometric evaluation on college staff and students. Educational and Psychological Measurement, 54, 372–382.  https://doi.org/10.1177/0013164494054002011.CrossRefGoogle Scholar
  11. de Vries, M., & Geurts, H. (2015). Influence of autism traits and executive functioning on quality of life in children with an autism spectrum disorder. Journal of Autism and Developmental Disorders, 45, 2734–2743.  https://doi.org/10.1007/s10803-015-2438-1.CrossRefPubMedCentralGoogle Scholar
  12. Eaves, L. C., & Ho, H. H. (2008). Young adult outcome of autism spectrum disorders. Journal of Autism and Developmental Disorders, 38, 739–747.  https://doi.org/10.1007/s10803-007-0441-x.CrossRefGoogle Scholar
  13. Epstein, J. L., & McPartland, J. M. (1976). The concept and measurement of the quality of school life. American Educational Research Journal, 13, 15–30.  https://doi.org/10.3102/00028312013001015.CrossRefGoogle Scholar
  14. Fowler, F. J. (2009). Survey research methods (4th ed.). Thousand Oaks: SAGE Publications.Google Scholar
  15. Giangreco, M. F., Cloninger, C. J., Yuan, P. H. M. S., & Ashworth, S. (1995). Perspectives of parents whose children have dual sensory impairments. Hand in Hand: Selected Reprints and Annotated Bibliography on Working With Students Who Are Deaf-Blind, 110.Google Scholar
  16. Gómez, J. L. C., de la Fuente Anuncibay, R., & Conde, R. M. S. (2010). Evaluation of the quality of life in people with autistic Spectrum disorder. Vertex, 90, 117–125.Google Scholar
  17. Green, V. A., Pituch, K. A., Itchon, J., Choi, A., O’Reilly, M., & Sigafoos, J. (2006). Internet survey of treatments used by parents of children with autism. Research in Developmental Disabilities, 27, 70–84.  https://doi.org/10.1016/j.ridd.2004.12.002.CrossRefGoogle Scholar
  18. Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, 45, 212–229.  https://doi.org/10.1111/j.1469-7610.2004.00215.x.CrossRefGoogle Scholar
  19. Huebner, E. S. (1991). Correlates of life satisfaction in children. School Psychology Quarterly, 6, 103–111.  https://doi.org/10.1037/h0088805.CrossRefGoogle Scholar
  20. Huebner, E. S. (1994). Preliminary development and validation of a multidimensional life satisfaction scale for children. Psychological Assessment, 6, 149–158.  https://doi.org/10.1037/1040-3590.6.2.149.CrossRefGoogle Scholar
  21. Huebner, E. S. (2001). Multidimensional Students’ Life Satisfaction Scale. Retrieved November, 28, 2006 from http://www.cas.sc.edu/psyc/pdfdocs/huebslssmanual.doc.
  22. Ikeda, E., Hinckson, E., & Krägeloch, C. (2014). Assessment of quality of life in children and youth with autism spectrum disorder: A critical review. Quality of Life Research, 23, 1069–1085.  https://doi.org/10.1007/s11136-013-0591-6.CrossRefGoogle Scholar
  23. Jennes-Coussens, M., Magill-Evans, J., & Koning, C. (2006). The quality of life of young men with Asperger syndrome: A brief report. Autism, 10, 403–414.  https://doi.org/10.1177/1362361306064432.CrossRefGoogle Scholar
  24. Jenney, M. E., & Campbell, S. (1997). Measuring quality of life. Archives of Disease in Childhood, 77, 347–350.  https://doi.org/10.1136/adc.77.4.347.CrossRefPubMedCentralGoogle Scholar
  25. Kazdin, A. E., & Weisz, J. R. (1998). Identifying and developing empirically supported child and adolescent treatments. Journal of Consulting and Clinical Psychology, 66, 19–36.  https://doi.org/10.1037/0022-006X.66.1.19.CrossRefGoogle Scholar
  26. Keith, K., & Bonham, G. (2005). The use of quality of life data at the organization and systems level. Journal of Intellectual Disability Research, 49, 799–805.  https://doi.org/10.1111/j.1365-2788.2005.00755.x.CrossRefGoogle Scholar
  27. Keith, K. D., & Schalock, R. L. (1994). The measurement of quality of life in adolescence: The quality of student life questionnaire. The American Journal of Family Therapy, 22, 83–87.  https://doi.org/10.1080/01926189408251300.CrossRefGoogle Scholar
  28. Kuhlthau, K., Orlich, F., Hall, T. A., Sikora, D., Kovacs, E. A., Delahaye, J., & Clemons, T. E. (2010). Health-related quality of life in children with autism spectrum disorders: Results from the autism treatment network. Journal of Autism and Developmental Disorders, 40, 721–729.  https://doi.org/10.1007/s10803-009-0921-2.CrossRefGoogle Scholar
  29. Laugeron, E. A., Frankel, F., Gantman, A., Dillon, A. R., & Mogil, C. (2012). Evidence-based social skills training for adolescents with autism spectrum disorder: The UCLA PEERS program. Journal of Autism and Developmental Disorders, 42, 1025–1036.  https://doi.org/10.1007/s10803-011-1339-1.CrossRefGoogle Scholar
  30. 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, 1147–1160.  https://doi.org/10.1007/s10803-007-0491-0.CrossRefGoogle Scholar
  31. Matson, J. L. (2007). Determining treatment outcome in early intervention programs for autism spectrum disorders: A critical analysis of measurement issues in learning based interventions. Research in Developmental Disabilities, 28, 207–218.  https://doi.org/10.1016/j.ridd.2005.07.006.CrossRefGoogle Scholar
  32. Matza, L. S., Swensen, A. R., Flood, E. M., Secnik, K., & Leidy, N. K. (2004). Assessment of health-related quality of life in children: A review of conceptual, methodological, and regulatory issues. Value in Health, 7(1), 79–92.  https://doi.org/10.1111/j.1524-4733.2004.71273.x.
  33. Mertler, C. A., & Vannatta, R. A. (2010). Advanced and multivariate statistical metods: Pyrczak Publishing.Google Scholar
  34. Mugno, D., Ruta, L., D'Arrigo, V. G., & Mazzone, L. (2007). Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health and Quality of Life Outcomes, 5, 22.  https://doi.org/10.1186/1477-7525-5-22.CrossRefPubMedCentralGoogle Scholar
  35. National Professional Development Center on Autism Spectrum Disorders. (n.d.). Evidence-based practices. Retrieved from: https://autismpdc.fpg.unc.edu/evidence-based-practices
  36. Persson, B. (2000). Brief report: A longitudinal study of quality of life and independence among adult men with autism. Journal of Autism and Developmental Disorders, 30, 61–66.  https://doi.org/10.1023/A:1005464128544.CrossRefGoogle Scholar
  37. Plimley, L. A. (2007). A review of quality of life issues and people with autism spectrum disorders. British Journal of Learning Disabilities, 35, 205–213.  https://doi.org/10.1111/j.1468-3156.2007.00448.x.CrossRefGoogle Scholar
  38. Qualtrics. (2018). Computer software. Provo: Qualtrics.Google Scholar
  39. Renty, J. O., & Roeyers, H. (2006). Quality of life in high-functioning adults with autism spectrum disorder the predictive value of disability and support characteristics. Autism, 10, 511–524.  https://doi.org/10.1177/1362361306066604.CrossRefGoogle Scholar
  40. Schalock, R. L., & Alonso, M. A. V. (2002). Handbook on quality of life for human service practitioners. Washington, DC: American Association on Mental Retardation.Google Scholar
  41. Schalock, R. L., Gardner, J. F., & Bradley, V. J. (2007). Quality of life for people with intellectual and other developmental disabilities: Applications across individuals, organizations, communities, and systems. Washington, DC: American Association on Intellectual and Developmental Disabilities.Google Scholar
  42. Sheldon, K. M. & Deci, E. (1996). The Self-Determination Scale. Unpublished manuscript, University of Rochester.Google Scholar
  43. Sheldon, K. M., Ryan, R. M., & Reis, H. (1996). What makes for a good day? Competence and autonomy in the day and in the person. Personality and Social Psychology Bulletin, 22, 1270–1279.  https://doi.org/10.1177/01461672962212007.CrossRefGoogle Scholar
  44. Shu, B.-C. (2009). Quality of life of family caregivers of children with autism the mother's perspective. Autism, 13, 81–91.  https://doi.org/10.1177/1362361307098517.CrossRefGoogle Scholar
  45. Stancliffe, R. J. (2000). Proxy respondents and quality of life. Evaluation and Program Planning, 23, 89–93.  https://doi.org/10.1016/S0149-7189(99)00042-7.CrossRefGoogle Scholar
  46. Statistical Package for the Social Sciences (2019) Statistics for Windows (Version 25) [Computer Software]. Armonk, NY: IBM Corp.Google Scholar
  47. Sternberg, R. J., Wagner, R. K., Williams, W. M., & Horvath, J. A. (1995). Testing common sense. American Psychologist, 50, 912–927.  https://doi.org/10.1037/0003-066X.50.11.912.CrossRefGoogle Scholar
  48. Varni, J. W. (1998). Pediatric quality of life inventory (PedsQL) [assessment instrument]. Lyon: Mapi Research Trust.Google Scholar
  49. Wallander, J. L., Schmitt, M., & Koot, H. M. (2001). Quality of life measurement in children and adolescents: Issues, instruments, and applications. Journal of Clinical Psychology, 57, 571–585.  https://doi.org/10.1002/jclp.1029.CrossRefGoogle Scholar
  50. Wolf, M. M. (1978). Social validity: The case for subjective measurement or how applied behavior analysis is finding its heart. Journal of Applied Behavior Analysis, 11, 203–214.  https://doi.org/10.1901/jaba.1978.11-203.CrossRefPubMedCentralGoogle Scholar

Copyright information

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

Authors and Affiliations

  • Judith Cholewicki
    • 1
  • Erik Drasgow
    • 1
  • Laura C. Chezan
    • 2
    Email author
  1. 1.University of South CarolinaColumbiaUSA
  2. 2.Old Dominion UniversityNorfolkUSA

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