Skip to main content

Assessment of Health-Related Quality of Life Among Primary Caregivers of Children with Autism Spectrum Disorders

Journal of Autism and Developmental Disorders volume 41, pages 1214–1227 (2011)Cite this article

Abstract

The impact of caring for a child with autism on caregivers’ health-related quality of life (HRQOL) is not fully understood. The objective of this study was to compare the HRQOL scores of caregivers of children with autism to those of the general US population and to identify the factors that influence HRQOL. Caregivers of children with autism had lower HRQOL scores than the general population. Care recipient level of functional impairment, social support, use of maladaptive coping, and burden influenced caregiver mental HRQOL. Care recipient extent of behavioral problems and social support influenced caregiver physical HRQOL. Findings emphasize the use of multi-pronged intervention approach that incorporates components aimed at improving family functioning, increasing support services, and assisting caregivers in developing healthy coping skills.

This is a preview of subscription content, access via your institution.

Access options

Buy single article

Instant access to the full article PDF.

43,34 €

Price includes VAT (Finland)
Tax calculation will be finalised during checkout.

Fig. 1
Fig. 2
Fig. 3
Fig. 4

References

  • Abbeduto, L., Seltzer, M. M., Shattuck, P., Krauss, M. W., Orsmond, G., & Murphy, M. M. (2004). Psychological well-being and coping in mothers of youths with autism, down syndrome, or fragile X syndrome. American Journal of Mental Retardation, 109, 237–254.

    PubMed  Article  Google Scholar 

  • 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.

    PubMed  Article  Google Scholar 

  • 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, 83–92.

    Article  Google Scholar 

  • Beach, S. R., Schulz, R., Williamson, G. M., Miller, L. S., Weiner, M. F., & Lance, C. E. (2005). Risk factors for potentially harmful informal caregiver behavior. Journal of the American Geriatrics Society, 53, 255–261.

    PubMed  Article  Google Scholar 

  • Bebko, J. M., Konstantareas, M. M., & Springer, J. (1987). Parent and professional evaluations of family stress associated with characteristics of autism. Journal of Autism and Developmental Disorders, 17, 565–576.

    PubMed  Article  Google Scholar 

  • Bishop, S. L., Richler, J., Cain, A. C., & Lord, C. (2007). Predictors of perceived negative impact in mothers of children with autism spectrum disorder. American Journal of Mental Retardation, 112, 450–461.

    PubMed  Article  Google Scholar 

  • Bollen, K. A., & Stine, R. A. (1992). Bootstrapping goodness-of-fit measures in structural equation modeling. In K. A. Bollen & J. S. Long (Eds.), Testing structural equation models. Newbury Park: Sage.

    Google Scholar 

  • Bouma, R., & Schweitzer, R. (1990). The impact of chronic childhood illness on family stress: A comparison between autism and cystic fibrosis. Journal of Clinical Psychology, 46, 722–730.

    PubMed  Article  Google Scholar 

  • Boyd, 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, 208–215.

    Article  Google Scholar 

  • Brannan, A. M., Heflinger, C. A., & Bickman, L. (1997). The caregiver strain questionnaire: Measuring the impact on the family of living with a child with serious emotional problems. Journal of Emotional and Behavioral Disorders, 5, 212–222.

    Article  Google Scholar 

  • Bromley, J., Hare, D. J., Davison, K., & Emerson, E. (2004). Mothers supporting children with autistic spectrum disorders: Social support, mental health status and satisfaction with services. Autism, 8, 409–423.

    PubMed  Article  Google Scholar 

  • Buhse, M. (2008). Assessment of caregiver burden in families of persons with multiple sclerosis. Journal of Neuroscience Nursing, 40, 25–31.

    PubMed  Article  Google Scholar 

  • Byles, J., Byrne, C., & Boyle, M. H. (1988). Ontario child health study: Reliability and validity of the general functioning subscale of the McMaster family assessment device. Family Process, 27, 97–104.

    PubMed  Article  Google Scholar 

  • Byrne, B. M. (2001). Structural equation modeling with Amos: Basic concepts, applications, and programming. Mahwah, NJ: Erlbaum.

    Google Scholar 

  • Carver, C. S. (1997). You want to measure coping but your protocol’s too long: Consider the brief COPE. International Journal of Behavioral Medicine, 4, 92–100.

    PubMed  Article  Google Scholar 

  • Chappell, N. L., & Reid, R. C. (2002). Burden and well-being among caregivers: Examining the distinction. Gerontologist, 42, 772–780.

    PubMed  Article  Google Scholar 

  • Davis, N. O., & Carter, A. S. (2008). Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Associations with child characteristics. Journal of Autism and Developmental Disorders, 38, 1278–1291.

    PubMed  Article  Google Scholar 

  • Donohue, P. K. (2002). Health-related quality of life of preterm children and their caregivers. Mental Retardation and Developmental Disabilities Research Reviews, 8, 293–297.

    PubMed  Article  Google Scholar 

  • Dunn, M. E., Burbine, T., Bowers, C. A., & Tantleff-Dunn, S. (2001). Moderators of stress in parents of children with autism. Community Mental Health Journal, 37, 39–52.

    PubMed  Article  Google Scholar 

  • Epstein, N. B., Baldwin, L. M., & Bishop, D. S. (1983). The McMaster family assessment device. Journal of Marital and Family Therapy, 9, 171–180.

    Article  Google Scholar 

  • Folkman, S., & Lazarus, R. S. (1980). An analysis of coping in a middle-aged community sample. Journal of Health and Social Behavior, 21, 219–239.

    PubMed  Article  Google Scholar 

  • Goldsworthy, B., & Knowles, S. (2008). Caregiving for Parkinson’s disease patients: An exploration of a stress-appraisal model for quality of life and burden. The Journals of Gerontology Series B Psychological Sciences and Social Sciences, 63, 372–376.

    Google Scholar 

  • Hastings, R. P., Kovshoff, H., Brown, T., Ward, N. J., Espinosa, F. D., & Remington, B. (2005a). Coping strategies in mothers and fathers of preschool and school-age children with autism. Autism, 9, 377–391.

    PubMed  Article  Google Scholar 

  • Hastings, R. P., Kovshoff, H., Ward, N. J., degli Espinosa, F., Brown, T., & Remington, B. (2005b). Systems analysis of stress and positive perceptions in mothers and fathers of pre-school children with autism. Journal of Autism and Developmental Disorders, 35, 635–644.

    PubMed  Article  Google Scholar 

  • Herring, S., Gray, K., Taffe, J., Tonge, B., Sweeney, D., & Einfeld, S. (2006). Behaviour and emotional problems in toddlers with pervasive developmental disorders and developmental delay: Associations with parental mental health and family functioning. Journal of Intellectual Disability Research, 50, 874–882.

    PubMed  Article  Google Scholar 

  • Hughes, S. L., Giobbie-Hurder, A., Weaver, F. M., Kubal, J. D., & Henderson, W. (1999). Relationship between caregiver burden and health-related quality of life. Gerontologist, 39, 534–545.

    PubMed  Article  Google Scholar 

  • Ievers, C. E., Brown, R. T., Lambert, R. G., Hsu, L., & Eckman, J. R. (1998). Family functioning and social support in the adaptation of caregivers of children with sickle cell syndromes. Journal of Pediatric Psychology, 23, 377–388.

    PubMed  Article  Google Scholar 

  • Kasari, C., & Sigman, M. (1997). Linking parental perceptions to interactions in young children with autism. Journal of Autism and Developmental Disorders, 27, 39–57.

    PubMed  Article  Google Scholar 

  • Kavanagh, D. T. (1992). Schizophrenia: An overview and practical handbook. London: Chapman and Hall.

    Google Scholar 

  • Kline, R. B. (2005). Principles and practice of structural equation modeling (2nd ed.). New York: Guilford.

    Google Scholar 

  • Kogan, M. D., Blumberg, S. J., Schieve, L. A., Boyle, C. A., Perrin, J. M., Ghandour, R. M., et al. (2009). Prevalence of parent-reported diagnosis of autism spectrum disorder among children in the US, 2007. Pediatrics, 124, 1395–1403.

    PubMed  Article  Google Scholar 

  • Leavy, R. L. (1983). Social support and psychological disorder: A review. Journal of Community Psychology, 11, 3–21.

    PubMed  Article  Google Scholar 

  • MacCallum, R. C., & Austin, J. T. (2000). Applications of structural equation modeling in psychological research. Annual Review of Psychology, 51, 201–226.

    PubMed  Article  Google Scholar 

  • Magana, S., & Smith, M. J. (2006). Psychological distress and well-being of Latina and non-Latina White mothers of youth and adults with an autism spectrum disorder: Cultural attitudes towards coresidence status. American Journal of Orthopsychiatry, 76, 346–357.

    PubMed  Article  Google Scholar 

  • Meyer, B. (2001). Coping with severe mental illness: Relations of the brief COPE with symptoms, functioning, and well-being. Journal of Psychopathology and Behavioral Assessment, 23, 265–277.

    Article  Google Scholar 

  • Montgomery, R., Gonyea, J., & Hooyman, N. (1985). Caregiving and the experience of subjective and objective burden. Family Relations, 34, 19–26.

    Article  Google Scholar 

  • Morimoto, T., Schreiner, A. S., & Asano, H. (2003). Caregiver burden and health-related quality of life among Japanese stroke caregivers. Age and Ageing, 32, 218–223.

    PubMed  Article  Google Scholar 

  • 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.

    PubMed  Article  Google Scholar 

  • Murphy, N. A., Christian, B., Caplin, D. A., & Young, P. C. (2007). The health of caregivers for children with disabilities: Caregiver perspectives. Child: Care, Health and Development, 33, 180–187.

    Article  Google Scholar 

  • 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 

  • Orsmond, G. I., Seltzer, M. M., Greenberg, J. S., & Krauss, M. W. (2006). Mother-child relationship quality among adolescents and adults with autism. American Journal of Mental Retardation, 111, 121–137.

    PubMed  Article  Google Scholar 

  • Rao, P. A., & Beidel, D. C. (2009). The impact of children with high-functioning autism on parental stress, sibling adjustment, and family functioning. Behavior Modification, 33, 437–451.

    PubMed  Article  Google Scholar 

  • Sales, E. (2003). Family burden and quality of life. Quality of Life Research, 12, 33–41.

    PubMed  Article  Google Scholar 

  • Saunders, M. M. (2009). Indicators of health-related quality of life in heart failure family caregivers. Journal of Community Health Nursing, 26, 173–182.

    PubMed  Article  Google Scholar 

  • Sawyer, M. G., Bittman, M., La Greca, A. M., Crettenden, A. D., Harchak, T. F., & Martin, J. (2009). Time demands of caring for children with autism: What are the implications for maternal mental health? Journal of Autism and Developmental Disorders, 40, 620–628.

    Article  Google Scholar 

  • Schopler, E., Reichler, R. J., De Vellis, R. F., & Dally, K. (1980). Toward objective classifications of childhood autism: Childhood autism rating scale (CARS). Journal of Autism and Developmental Disorders, 10, 91–103.

    PubMed  Article  Google Scholar 

  • Serrano-Aguilar, P. G., Lopez-Bastida, J., & Yanes-Lopez, V. (2006). Impact on health-related quality of life and perceived burden of informal caregivers of individuals with Alzheimer’s disease. Neuroepidemiology, 27, 136–142.

    PubMed  Article  Google Scholar 

  • Sharpley, C., Bitsika, V., & Efremidis, B. (1997). Influence of gender, parental health, and perceived expertise of assistance upon stress, anxiety, and depression among parents of children with autism. Journal of Intellectual and Developmental Disability, 22, 19–28.

    Article  Google Scholar 

  • Shu, B. C. (2009). Quality of life of family caregivers of children with autism: The mother’s perspective. Autism, 13, 81–91.

    PubMed  Article  Google Scholar 

  • Shu, B. C., & Lung, F. W. (2005). The effect of support groups on the mental health and quality of life for mothers of autistic children. Journal of Intellectual Disability Research, 49, 47–53.

    PubMed  Article  Google Scholar 

  • Smith, L. E., Seltzer, M. M., Tager-flusberg, H., Greenberg, J. S., & Carter, A. S. (2008). A comparative analysis of well-being and coping among mothers of toddlers and mothers of adolescents with ASD. Journal of Autism and Developmental Disorders, 38, 876–889.

    PubMed  Article  Google Scholar 

  • Stuart, M., & McGrew, J. H. (2009). Caregiver burden after receiving a diagnosis of an autism spectrum disorder. Research in Autism Spectrum Disorder, 3, 86–97.

    Article  Google Scholar 

  • Tabachnick, B. G., & Fidell, L. S. (2001). Using multivariate statistics. Boston, London: Allyn and Bacon.

    Google Scholar 

  • Taffe, J. R., Gray, K. M., Einfeld, S. L., Dekker, M. C., Koot, H. M., Emerson, E., et al. (2007). Short form of the developmental behaviour checklist. American Journal of Mental Retardation, 112, 31–39.

    PubMed  Article  Google Scholar 

  • Testa, M. A., & Simonson, D. C. (1996). Assesment of quality-of-life outcomes. New England Journal of Medicine, 334, 835–840.

    PubMed  Article  Google Scholar 

  • Tobing, L. E., & Glenwick, D. S. (2002). Relation of the childhood autism rating scale-parent version to diagnosis, stress, and age. Research in Developmental Disabilities, 23, 211–223.

    PubMed  Article  Google Scholar 

  • Wade, S. L., Borawski, E. A., Taylor, H. G., Drotar, D., Yeates, K. O., & Stancin, T. (2001). The relationship of caregiver coping to family outcomes during the initial year following pediatric traumatic injury. Journal of Consulting and Clinical Psychology, 69, 406–415.

    PubMed  Article  Google Scholar 

  • Ware, J. E., Kosinski, M., Bjorner, J. B., Turner-Bowker, D. M., & Maruish, M. E. (2007). User’s manual for the SF-36 ® health survey (version 2) (2nd ed.). Lincoln, RI: Quality Metric Incorporated.

    Google Scholar 

  • Ware, J. E., Kosinski, M., & Keller, S. D. (1996). A 12-item short-form health survey: Construction of scales and preliminary tests of reliability and validity. Medical Care, 34, 220–233.

    PubMed  Article  Google Scholar 

  • Ware, J. E., Kosinski, M., Turner-Bowker, D. M., & Gandek, B. (2002). User’s manual for the SF-12v2 Health survey (with a supplement documenting SF-12 health survey). Lincoln, RI: Quality Metric Incorporated.

    Google Scholar 

  • WHOQOL Group. (1995). The World Health Organization quality of life assessment (WHOQOL): position paper from the World Health Organization. Social Science and Medicine, 41, 1403–1409.

    Article  Google Scholar 

  • Yates, M. E., Tennstedt, S., & Chang, B.H. (1999). Contributors to and mediators of psychological well-being for informal caregivers. Journal of Gerontology: Psychological Sciences, 54B, 12–22.

    Article  Google Scholar 

  • Zimet, G. D., Dahlem, N. W., Zimet, S. G., & Farley, G. K. (1988). The multidimensional scale of perceived social support. Journal of Personality Assessment, 52, 30–41.

    Article  Google Scholar 

Download references

Acknowledgments

The authors of the study would like to acknowledge the logistical support provided by Julie O’Malley and other staff members at the West Virginia Autism Training Center, Huntington, WV. Special thanks to caregivers who participated in the study survey. This study was part of the primary author’s doctoral dissertation project.

Author information

Affiliations

  1. Department of Pharmacy Administration, University of Mississippi, University, MS, 38677, USA

    Rahul Khanna

  2. Department of Pharmaceutical Systems and Policy, West Virginia University, Morgantown, WV, 26506, USA

    Rahul Khanna, S. Suresh Madhavan & Cindy Tworek

  3. University of Oklahoma College of Pharmacy, Tulsa, OK, 74135, USA

    Michael J. Smith

  4. Department of Psychology, West Virginia University, Morgantown, WV, 26506, USA

    Julie H. Patrick

  5. West Virginia Autism Training Center, Marshall University, Huntington, WV, 25755, USA

    Barbara Becker-Cottrill

Authors
  1. Rahul Khanna
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. S. Suresh Madhavan
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Michael J. Smith
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Julie H. Patrick
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Cindy Tworek
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Barbara Becker-Cottrill
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Rahul Khanna.

Rights and permissions

Reprints and Permissions

About this article

Cite this article

Khanna, R., Madhavan, S.S., Smith, M.J. et al. Assessment of Health-Related Quality of Life Among Primary Caregivers of Children with Autism Spectrum Disorders. J Autism Dev Disord 41, 1214–1227 (2011). https://doi.org/10.1007/s10803-010-1140-6

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10803-010-1140-6

Keywords

  • Autism
  • Caregiver
  • Health-related quality of life
  • Burden