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.
Similar content being viewed by others
References
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders fifth edition: DSM-5. Washington, DC: American Psychiatric Publishing.
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.
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.
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.
Kheir, N., et al. (2012). Quality of life of caregivers of children with autism in Qatar. Autism, 16(3), 293–298.
Tint, A., & Weiss, J. A. (2016). Family wellbeing of individuals with autism spectrum disorder: A scoping review. Autism, 20(3), 262–275.
Cummins, R. A. (2005). Moving from the quality of life concept to a theory. Journal of Intellectual Disability Research, 49(Pt 10), 699–706.
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.
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.
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.
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.
Eapen, V., & Guan, J. (2016). Parental quality of life in autism spectrum disorder: Current status and future directions. Acta Psychopathologica, 2(1), 31.
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.
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.
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.
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.
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.
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.
Volkmar, F. R. (2014). Editorial: The importance of early intervention. Journal of Autism and Developmental Disorders, 44(12), 2979–2980.
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.
Brown, I., et al. (2006). Family quality of life survey: Main caregivers of people with intellectual or developmental disabilities. Toronto: Surrey Place Centre.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Tremblay, M. S., et al. (2010). Physiological and health implications of a sedentary lifestyle. Applied Physiology, Nutrition and Metabolism, 35(6), 725–740.
Tremblay, M. S., et al. (2011). New Canadian physical activity guidelines. Appl Physiol Nutr Metab, 36(1), 36–46.
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
Corresponding author
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
About this article
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
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s11136-016-1382-7