Skip to main content

Advertisement

SpringerLink
Log in

Autism spectrum disorder: family quality of life while waiting for intervention services

  • Published:
Quality of Life Research Aims and scope Submit manuscript

Abstract

Purpose

Families of children with autism spectrum disorder (ASD) often experience high levels of stress; it is important to investigate the family quality of life (FQOL) to understand how to serve the entire family, not just the child. The purpose of this investigation was to determine: (a) how families with a child with ASD view their overall FQOL and (b) what aspects of everyday life have the greatest influence on the FQOL?

Methods

A survey designed to asses FQOL was mailed to all families (n = 454) of children with ASD (0–18 years) waiting for government-funded services. Results from 151 surveys were examined (31 % response rate). Descriptive on all variables, ordinal logistic regression, and t tests were used to analyze the data.

Results

The most influential factors on FQOL were whether the child with ASD had a major health concern, whether the family’s needs were met by disability-related services, and whether there were opportunities to engage in leisure and recreation activities.

Conclusions

Families on waitlists experience challenges in FQOL influenced by the health of the family members; this is implicitly important for service agencies and providers. Future research should continue to explore how access to disability-related services impacts FQOL; and how these associations may be moderated by contextual factors such as socioeconomic status, health of child and family members, access and engagement in recreation, and severity of the child’s needs.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2

Similar content being viewed by others

References

  1. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders fifth edition: DSM-5. Washington, DC: American Psychiatric Publishing.

    Book  Google Scholar 

  2. Sanders, J. L., & Morgan, S. B. (1997). Family stress and adjustment as perceived by parents of children with autism or down syndrome: Implications for intervention. Child and Family Behavior Therapy, 19(4), 15–32.

    Article  Google Scholar 

  3. Myers, B. J., Mackintosh, V. H., & Goin-Kochel, R. P. (2009). “My greatest joy and my greatest heart ache:” Parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ lives. Research in Autism Spectrum Disorders, 3, 670–684.

    Article  Google Scholar 

  4. Gray, D. E. (2002). Ten years on: A longitudinal study of families of children with autism. Journal of Intellectual and Developmental Disability, 27(3), 215–222.

    Article  Google Scholar 

  5. Kheir, N., et al. (2012). Quality of life of caregivers of children with autism in Qatar. Autism, 16(3), 293–298.

    Article  PubMed  Google Scholar 

  6. Tint, A., & Weiss, J. A. (2016). Family wellbeing of individuals with autism spectrum disorder: A scoping review. Autism, 20(3), 262–275.

    Article  PubMed  Google Scholar 

  7. Cummins, R. A. (2005). Moving from the quality of life concept to a theory. Journal of Intellectual Disability Research, 49(Pt 10), 699–706.

    Article  CAS  PubMed  Google Scholar 

  8. Brown, R. I., et al. (2006). Family quality of life when there is a child with a developmental disability. Journal of Policy and Practice in Intellectual Disabilities, 3(4), 238–245.

    Article  Google Scholar 

  9. 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.

    Article  PubMed  PubMed Central  Google Scholar 

  10. Lee, L. C., et al. (2008). Children with autism: Quality of life and parental concerns. Journal of Autism and Developmental Disorders, 38(6), 1147–1160.

    Article  PubMed  Google Scholar 

  11. Johnson, N., et al. (2011). Autism spectrum disorder: Parenting stress, family functioning and health-related quality of life. Families, Systems and Health, 29(3), 232–252.

    Article  PubMed  Google Scholar 

  12. Eapen, V., & Guan, J. (2016). Parental quality of life in autism spectrum disorder: Current status and future directions. Acta Psychopathologica, 2(1), 31.

    Article  Google Scholar 

  13. Lang, R., et al. (2010). Physical exercise and individuals with autism spectrum disorders: A systematic review. Research in Autism Spectrum Disorders, 4(4), 565–576.

    Article  Google Scholar 

  14. Rivard, M., et al. (2014). Determinants of stress in parents of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 44(7), 1609–1620.

    Article  PubMed  Google Scholar 

  15. Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(3), 629–642.

    Article  PubMed  Google Scholar 

  16. Chasson, G. S., Harris, G. E., & Neely, W. J. (2007). Cost comparison of early intensive behavioral intervention and special education for children with autism. Journal of Child and Family Studies, 16, 401–413.

    Article  Google Scholar 

  17. Bromley, J., et al. (2004). Mothers supporting children with autistic spectrum disorders: Social support, mental health status and satisfaction with services. Autism, 8(4), 409–423.

    Article  PubMed  Google Scholar 

  18. Benson, B., & Dewey, D. (2008). Parental stress and needs in families of children with autism spectrum disorder. International Journal of Disability, Community and Rehabilitation, 7(1), 1–9.

    Google Scholar 

  19. Volkmar, F. R. (2014). Editorial: The importance of early intervention. Journal of Autism and Developmental Disorders, 44(12), 2979–2980.

    Article  PubMed  Google Scholar 

  20. Boyd, B. A. (2002). Examining the relationship between stress and lack of social support in mothers of children with autism. Focus on Autism and Other Developmental Disabilities, 17(4), 208–215.

    Article  Google Scholar 

  21. Brown, I., et al. (2006). Family quality of life survey: Main caregivers of people with intellectual or developmental disabilities. Toronto: Surrey Place Centre.

    Google Scholar 

  22. Verdugo, M. A., Córdoba, L., & Gómez, J. (2005). Spanish adaptation and validation of the Family Quality of Life Survey. Journal of Intellectual Disability Research, 49(10), 794–798.

    Article  CAS  PubMed  Google Scholar 

  23. Perry, A., & Isaacs, B. (2015). Validity of the Family Quality of Life Survey–2006. Journal of Applied Research in Intellectual Disabilities, 28(6), 584–588.

    Article  PubMed  Google Scholar 

  24. Isaacs, B., et al. (2012). Testing the factor structure of the Family Quality of Life Survey–2006. Journal of Intellectual Disability Research, 56(1), 17–29.

    Article  CAS  PubMed  Google Scholar 

  25. 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 and Adolescent Medicine, 160(8), 825–830.

    Article  PubMed  Google Scholar 

  26. Matson, J. L., & Nebel-Schwalm, M. S. (2007). Comorbid psychopathology with autism spectrum disorder in children: An overview. Research in Developmental Disabilities, 28(4), 341–352.

    Article  PubMed  Google Scholar 

  27. Davis, K., & Gavidia-Payne, S. (2009). The impact of child, family, and professional support characteristics on the quality of life in families of young children with disabilities. Journal of Intellectual Developmental Disability, 34(2), 153–162.

    Article  PubMed  Google Scholar 

  28. Janssen, I., & LeBlanc, A. G. (2010). Systematic review of the health benefits of physical activity and fitness in school-aged children and youth. International Journal of Behavioral Nutrition and Physical Activity, 7(40), 1–16.

    Google Scholar 

  29. Warburton, D. E. R., Nicol, C. W., & Bredin, S. S. D. (2006). Health benefits of physical activity: The evidence. Canadian Medical Association Journal, 174(6), 801–809.

    Article  PubMed  PubMed Central  Google Scholar 

  30. Bremer, E., Crozier, M., & Lloyd, M. (2016). A systematic review of the behavioural outcomes following exercise interventions for children and youth with autism spectrum disorder. Autism. doi:10.1177/1362361315616002.

    PubMed  Google Scholar 

  31. Bremer, E., & Lloyd, M. (2016). School-based fundamental motor skill intervention for children with autism-like characteristics: A preliminary case study. Adapted Physical Activity Quarterly, 33(1), 66–88.

    Article  PubMed  Google Scholar 

  32. Mason, O. J., & Holt, R. (2012). Mental health and physical activity interventions: A review of the qualitative literature. Journal of Mental Health, 21(3), 274–284.

    Article  PubMed  Google Scholar 

  33. Josefsson, T., Lindwall, M., & Archer, T. (2014). Physical exercise intervention in depressive disorders: Meta-analysis and systematic review. Scandinavian Journal of Medicine and Science in Sports, 24(2), 259–272.

    Article  CAS  PubMed  Google Scholar 

  34. Colley, R. C., et al. (2011). Physical activity of Canadian children and youth: Accelerometer results from the 2007 to 2009 Canadian Health Measures Survey. Health Reports, 22(1), 15–23.

    PubMed  Google Scholar 

  35. Colley, R. C., et al. (2011). Physical activity of Canadian adults: Accelerometer results from the 2007 to 2009 Canadian Health Measures Survey. Health Reports, 22(1), 7–14.

    PubMed  Google Scholar 

  36. Tremblay, M. S., et al. (2010). Physiological and health implications of a sedentary lifestyle. Applied Physiology, Nutrition and Metabolism, 35(6), 725–740.

    Article  Google Scholar 

  37. Tremblay, M. S., et al. (2011). New Canadian physical activity guidelines. Appl Physiol Nutr Metab, 36(1), 36–46.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

The authors would like to thank Jacqueline Mangal for her assistance in preparing the mail out and with data entry. We would also like to thank the families who participated for taking the time to fill out the study questionnaires, as well as the service partners in the program: Grandview Children’s Centre, Lake Ridge Community Support Services, and Resources for Exceptional Children and Youth—Durham. The ABA services the families were waiting for are funded by the Ontario Ministry of Children and Youth Services.

Author information

Authors and Affiliations

  1. University of Ontario Institute of Technology, 2000 Simcoe St N, Oshawa, ON, L1H 7K4, Canada

    Sean Jones & Meghann Lloyd

  2. McMaster University, Hamilton, ON, Canada

    Emily Bremer

Authors
  1. Sean Jones
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Emily Bremer
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Meghann Lloyd
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Meghann Lloyd.

Ethics declarations

Ethical standard

Research ethics approval was granted for all program evaluation initiatives as part of this government-funded program and all families participating in the program provided informed consent for program evaluation data to be used for research purposes.

Conflict of interest

There are no conflicts of interest to report.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Jones, S., Bremer, E. & Lloyd, M. Autism spectrum disorder: family quality of life while waiting for intervention services. Qual Life Res 26, 331–342 (2017). https://doi.org/10.1007/s11136-016-1382-7

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-016-1382-7

Keywords

Search

Navigation