Applied Research in Quality of Life

, Volume 6, Issue 1, pp 91–102 | Cite as

Subjective Quality of Life for Parents of Children with Autism Spectrum Disorders in Croatia

  • Tomislav BenjakEmail author


The purpose of this study was to investigate the subjective quality of life (SQoL) of parents of children with autism spectrum disorders (ASD) who are primary carers. The study included 346 parents: 177 parents of children with ASD and 169 parents of non-disabled children comprised the control group. The Personal Wellbeing Index (PWI) was used to assess SQoL. Parents’ general health perception was assessed with a single question scored on a scale from 1 (poor health) to 5 (excellent health). Parents of children with ASD reported a significantly lower SQoL and general health perception with more physiological symptoms as compared to parents of non-disabled children. In Croatia parents of children with ASD, as primary caregivers, is an especially vulnerable part of the population and need increased social support and assistance in order to achieve and maintain the well-being of the whole family.


Subjective quality of life Parents Autism spectrum disorders Caregivers Croatia 



Subjective Quality of life


Autism spectrum disorders


Personal Wellbeing Index



This work was conducted within The National Strategy of Equalization of Possibilities for Persons with disabilities for 2007–2015. The authors specially thanks Ministry of Family, Veterans’ Affairs and Intergenerational Solidarity, employees of Autism Center Zagreb, employees in primary schools around Croatia and all the parents whose support this research.


  1. Abramson, R., Ravan, S., Wright, H., Wieduwilt, K., Wolpert, C., Donnelly, S., et al. (2005). The relationship between restrictive and repetitive behaviours in individuals with autism and obsessive compulsive symptoms in parents. Child Psychiatry and Human Development, 36(2), 155–165.CrossRefGoogle Scholar
  2. Allik, H., Larsson, J., & Smedje, H. (2006). Health-related quality of life in parents of school age children with Asperger Syndrome or High-Functioning Autism. Health & Quality of Life Outcomes, 4(4), 1.CrossRefGoogle Scholar
  3. Blanchard, L. T., Gurka, M. J., & Blackman, J. A. (2006). Emotional, developmental, and behavioral health of American children and their families: a report from the 2003 National Survey of Children’s Health. Pediatrics, 117(6), 1202–1212.CrossRefGoogle Scholar
  4. Bouma, R., & Schmeitzer, 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.CrossRefGoogle Scholar
  5. Brown, I., Anand, S., Fung, W. L. A., Isaacs, B., & Baum, N. (2003). Family quality of life: Canadian results from an international study. Journal of Developmental and Physical Disabilities, 15, 207–230.CrossRefGoogle Scholar
  6. Brown, R. I., MacAdam-Crisp, J., Wang, M., & Iarocci, G. (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.CrossRefGoogle Scholar
  7. Canam, C., & Acorn, S. (1999). Quality of life for family caregivers of people with chronic health problems. Rehabilitation Nursing, 24(5), 192–196. 200.Google Scholar
  8. Centers for Disease Control and Prevention. (2007). Prevalence of autism spectrum disorders. Autism and Developmental Disabilities Monitoring Network Surveillance Year 2000. MMWR Surveillance Summaries, 56(1), 1–11.Google Scholar
  9. Christensen, K. A., Stephens, M. A., & Townsend, A. L. (1998). Mastery in women’s multiple roles and well-being: adult daughter providing care for impaired parents. Health Psychology, 17(2), 163–171.CrossRefGoogle Scholar
  10. Croatian Central Bureau of Statistics. (2008). Statistical information (p. 20). Zagreb: Central Bureau of Statistics of the Republic of Croatia.Google Scholar
  11. Cummins, R. A. (1996). The domains of life satisfaction: an attempt to order chaos. Social Indicators Research, 38, 303–332.CrossRefGoogle Scholar
  12. Cummins, R. A. (2000). Objective and subjective quality of life: an interactive model. Social Indicators Research, 52, 55–72.CrossRefGoogle Scholar
  13. Cummins, R. A. (2001). The subjective wellbeing of people caring for a family member with a severe disability at home: a review. Journal of Intellectual & Developmental Disability, 26(1), 83–100.CrossRefGoogle Scholar
  14. Cummins, R. A., & Nistico, H. (2002). Maintaining life satisfaction: the role of positive bias. Journal of Happiness Studies, 3, 37–69.CrossRefGoogle Scholar
  15. Cummins, R. A., Eckersley, R., Pallant, J., Van Vugt, J., & Misajon, R. (2003). Developing a national index of subjective wellbeing: the Australian Unity Wellbeing Index. Social Indicators Research, 64(2), 159–190.CrossRefGoogle Scholar
  16. Early, T. J., Gregoire, T. K., & Mcdonald, T. P. (2002). Child functioning and caregiver well-being in families of children with emotional disorders. Journal of Family Issues, 23(3), 374–391.CrossRefGoogle Scholar
  17. Epstein, I., Stinson, J., & Stevens, B. (2005). The effects of camp on health-related quality of life in children with chronic illnesses: a review of the literature. Journal of Pediatric Oncology Nursing, 22(2), 89–103.CrossRefGoogle Scholar
  18. Fombonne, E. (2009). Epidemiology of pervasive developmental disorders. Pediatric research, 65(6), 591–598.CrossRefGoogle Scholar
  19. Gillham, J. E., Carter, A. S., Volkmar, F. R., & Sparrow, S. S. (2000). Toward a developmental operational definition of autism. Journal of Autism & Developmental Disorders, 30(4), 269–278.CrossRefGoogle Scholar
  20. Hare, D., Pratt, C., Burton, M., Bromley, J., & Emerson, E. (2004). The health and social care needs of family carers supporting adults with autistic spectrum disorders. Autism, 8(4), 425–444.CrossRefGoogle Scholar
  21. Hastings, R., & Johnson, E. (2001). Stress in UK families conducting intensive home-based behavioral intervention for their young child with autism. Journal of Autism and Developmental Disability, 31(3), 327–336.CrossRefGoogle Scholar
  22. Higgins, D. J., Bailey, S. R., & Pearce, J. C. (2005). Factors associated with functioning style and coping strategies of families with a child with an autism spectrum disorder. Autism, 9(2), 125–137.CrossRefGoogle Scholar
  23. International Wellbeing Group. (2006). Personal Wellbeing Index. Melbourne: Australian Centre on Quality of Life, Deakin University Accessed 12 October 2009.
  24. Kober, R., & Eggleton, I. R. C. (2009). Using quality of life to evaluate outcomes and measure effectiveness. Journal of Policy and Practice in Intellectual Disabilities, 6(1), 40–51.CrossRefGoogle Scholar
  25. Mugno, D., Ruta, L., & D’Arrigo, V. G. (2007). Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health and Quality of Life Outcomes, 5, 22.CrossRefGoogle Scholar
  26. Olsson, M. B., & Hwang, C. P. (2001). Depression in mothers and fathers of children with intellectual disability. Journal of Intellectual Disability Research, 45, 535–543.CrossRefGoogle Scholar
  27. Olsson, M. B., & Hwang, C. P. (2008). Socioeconomic and psychological variables as risk and protective factors for parental wellbeing in families of children with intellectual disabilities. Journal of Intellectual Disability Research, 52(12), 1102–1113.CrossRefGoogle Scholar
  28. Turnbull, A. P., Brown, I., Turnbull, H. R., III, & Turnbull, H. R. (2004). Families and persons with mental retardation and quality of life: International perspectives (p. 4). Washington: American Association on Mental Retardation.Google Scholar
  29. Volkmar, F. R., & Pauls, D. (2003). Autism. Lancet, 362(9390), 1133–1141.CrossRefGoogle Scholar
  30. Vuletic, G. (2006). Health related quality of life and satisfaction with life in Croatia. Proceedings of the 8th Australian Conference on Quality of Life. Deakin University, Melbourne, Australia Accessed 12 October 2009.
  31. Welch, W. (1997). Approaches to autism. London: The National Autistic Society.Google Scholar
  32. Yau, M. K. S., & Li-Tsang, C. W. P. (1999). Adjustment and adaptation in parents of children with developmental disability in two-parent families: a review of the characteristic and attributes. British Journal of Developmental Disabilities, 45, 38–52.Google Scholar
  33. Zuna, N. I., Selig, J. P., Summers, J. A., & Turnbull, A. P. (2009a). Confirmatory factor analysis of a family quality of life scale for families of kindergarten children without disabilities. Journal of Early Intervention, 31, 111–125.CrossRefGoogle Scholar
  34. Zuna, N. I., Turnbull, A., & Summers, J. A. (2009b). Family quality of life: moving from measurement to application. Journal of Policy and Practice in Intellectual Disabilities, 6(1), 25–31.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media B.V./The International Society for Quality-of-Life Studies (ISQOLS) 2010

Authors and Affiliations

  1. 1.Croatian Public Health InstituteZagrebCroatia

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