Quality of life of caregivers of child with autism
The theoretical paper deals with the quality of life of parents of autistic children. In its introduction, the paper describes the symptoms connected with the autism diagnosis and the influence of the diagnosis on the quality of a family everyday life. Later, the variables which contribute to higher or lower quality of life of those parents are described. The paper focuses on the comparison of the quality of life of parents of autistic children and parents of children with a typical development as well as parents of children with different diagnoses. The paper also describes the gender differences in the quality of life of mothers and fathers of autistic children.
(Fulltext in Slovak)
Keywordsquality of life, autism, parents of children with autism
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.
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), 1–8.
Barker, E. T., Hartley, S. L., Seltzer, M. M., Floyd, F. J., Greenberg, J. S., & Orsmond, G. I. (2011). Trajectories of emotional well-being in mothers of adolescents and adults with autism. Developmental Psychology, 47, 551–561.
Bayat, M. (2007). Evidence of resilience in families of children with autism. Journal of Intellectual Disability Research, 51, 702–714.
Benson, P. R. (2006). The impact of child symptom severity on depressed mood among parents of children with ASD: The mediating role of stress proliferation. Journal of Autism and Developmental Disorders, 36, 685–695.
Billington, R. (1999). WHOQOL annotated bibliography: October 1999 version. Geneva, Switzerland: World Health Organization, Department of Mental Health. Dostupné na WWW: http://depts.washington.edu/…iography.pdf
Bode, H., Weidner, K., & Storck, M. (2000). Quality of life in families of children with disabilities. Developmental Medicine & Child Neurology, 42, 354.
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.
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, 208.
Cappe, E., Wolff, M., Bobet, R., & Adrien, J. L. (2011). Quality of life: a key variable to consider in the evaluation of adjustment in parents of children with autism spectrum disorders and in the development of relevant support and assistance programmes. Quality of Life Research, 20, 279–1294.
Church,C., Alisanski, S., &Amanullah, S. (2000). The social, behavioral, and academic experiences of children with Asperger syndrome. Focus on Autism and Other Developmental Disabilities, 15(1), 12–20.
Cummins, R. A. (2001). The subjective well-being of people caring for a family member with a severe disability at home: A review. Journal of Intellectual & Developmental Disability, 26, 83–100.
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.
Diagnostic and statistical manual of mental disorders: DSM-IV-TR (4th edition, text revision). Washington DC, USA: American Psychiatric Association.
Diagnostic and statistical manual of mental disorders: DSM-V-TR (5th edition). Washington DC, USA: American Psychiatric Association.
Dunn, M. M., 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.
Emerson, E. (2003). Mothers of children and adolescents with intellectual disability: Social and economic situation, mental health status, and the self-assessed social and psychological impact of the child’s difficulties. Journal of Intellectual Disability Research, 47, 385–399.
Fitzpatrick, R., Fletcher, A., Gore S, et al. (1992). Quality of life measures in health care, I: Applications and issues in assessment. BMJ, 305, 1074–1077. Dostupné na WWW: http://www.ncbi.nlm.nih.gov/…098-0040.pdf
Fox, L., Vaughn, B.J., Wyatte, M.L., & Dunlap, G. (2002).“We can’t expect other people to understand”: Family perspectives on problem behavior. Exceptional Children, 68, 437–450.
Frank-Stromborg, M. (1988). Instruments for clinical nursing research. Norwalk, CT: Appleton & Lange.
Gray, D. (1993). Perceptions of stigma: The parents of autistic children. Sociology of Health and Illness, 15, 102–120.
Gray, D. (2006). Coping over time: The parents of children with autism. Journal of Intellectual Disability Research, 50, 970–976.
Hall, H. (2012). Families of children with autism: behaviours of children, community support and coping. Issues Compr Pediatr Nurs, 35(2), 111–132.
Hastings, R. P. (2003). Behavioral adjustment of siblings of children with autism engaged in applied behavior analysis early intervention programs: The moderating role of social support. Journal of Autism and Developmental Disorders, 33,141–150.
Hastings, R. P., Kovshoff, H., Brown, T., Ward, N. J., Degli Espinosa, F., & Remington, B. (2005). Coping strategies in mothers and fathers of preschool and school-age children with autism. Autism, 9(4), 377–391.
Higgins, D. J., Bailey, S. R., & Pearce, J. C. (2005). Factors associ¬ated with functioning style and coping strategies of families with a child with an autism spectrum disorder. Autism, 9, 125–137.
Kasari, C., & Sigman, M. (1997). Linking parental perceptions to interactions in young children with autism. Journal of Autism and Developmental Disorders, 27, 39–57.
Kazdin, A.E. (2000). Encyclopedia of Psychology. Washington, D.C.: American Psychological Association.
Kheir, N. M., Ghoneim, O. M., Sandridge, A. L., Hayder, S. A., Al-Ismail, M. S., Hayder, S., & Al-Rawi, F. (2012). Quality of Life of caregivers of children with autism in Quatar. Autism, 16 (3), 293–298.
Klin, A., & Volkmar, F.R. (2000). Treatment and intervention guidelines for individuals with Aspergers syndrome. In, A. Klin, F.R. Volkmar, &, S.S. Sparrow (Eds.), Asperger’s syndrome (pp. 340–366). New York: Guilford.
Konstantareas, M., & Papageorgiou, V. (2006). Effects of temperament, symptom severity and level of functioning on maternal stress in Greek children and youth with ASD. Autism, 10(6), 593–607.
Kuhaneck, H. M., Burroughs, T., Wright, J., Lemanczyk, T., & Darragh A. R. (2010). A qualitative study of coping in moth¬ers of children with an autism spectrum disorder. Physical and Occupational Therapy in Pediatrics, 30, 340–350.
Kuhlthau, K., Payakachat, N., Delahaye, J., Hurson, J., Pyne, J. M., Kovacs, E., & Tilford, J. M. (2014). Quality of life for parents of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 8, 1339–1350.
Kumar, N., Santosha, C. D., & Joseph, P. (2013). Quality of Life of parents of individual with autism, cerebral palsy and mental retardation in India. Indian Journal of Health and Well-being, 4(4), 765–771.
Lainhart, J.E. (1999). Psychiatric problems in individuals with autism, their parents and siblings. International Review of Psychiatry, 11, 278–298.
Lee, G. K., Lopata, C., Volker, M. A., Thomeer, M. L., Nida, R. E., Toomey, J. A., et al. (2009). Health-Related Quality of Life of Parents of Children with High-Functioning Autism Spectrum Disorders. Focus on Autism and Other Developmental Disabilities, 24(4), 227–239.
Leung, Y. S. C., & Li-Tsang, W. P.(2003). Quality of life of parents who have children with disabilities. Hong Kong Journal of Occupational Therapy, 13(10), 19–24.
Luther, E. H., Canham, D. L., & Young Cureton, V. (2005). Coping and social support for parents of children with autism. Journal of School Nursing, 21, 40–47.
Magana, S., & Smith, M. J. (2006). Psychological distress and wellbeing 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.
Malhotra, S., Khan, W., & Bhatia, M.S. (2012). Quality of life of parents having children with developmental disabilities. Delhi Psychiatry Journal, 15(1), 171–76.
Marans, W.D., Rubin, E., & Laurent, A. (2005). Addressing social communication skills in individuals with high-functioning autism, Asperger syndrome: Critical priorities in educational programming. In F.R. Volkmar, R. Paul, A. Klin, &, D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders: Vol. 2. Assessment, interventions, and policy (3rd ed., pp. 977–1002). Hoboken, NJ: John Wiley & Sons.
McGuire, B. K., Crowe, T. K., Law, M., & VanLeit, B. (2004). Mothers of children with disabilities: Occupational concerns and solutions. OTJR: Occupation, Participation, and Health, 24, 54–63.
McSweeny, A. J., & Creer,T. L. (1995). Health-related quality of life assessment in medical care. Disease a Month, 41 (1), 171.
Meltzer, D.O., & Smith, P.C. (2011). Theoretical issues relevant to the economic evaluation of health technologies. In Handbook of Health Economics (pp.433–469). Elsevier.
Mojdeh, B. (2005). How family members’ perceptions of influences and causes of autism may predict assessment of their family quality of life. Unpublished doctoral dissertation, Loyola University, Chicago.
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), 1–20.
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(3), 670–684.
Perumal, V., Veeraraghavan V., & Lekhra, O. P. (2014). Quality of life in families of children with autism spectrum disorder in India. Journal of Pharmacy Research, 8(6), 791–797.
Petalas, M. A., Hastings, R. R, Nash, S., Lloyd, T., & Dowey, A. (2009). Emotional and behavioral adjustment in siblings of children with intellectual disability with and without autism. Autism, 13, 471–483.
Phetrasuwan, S. (2003). Psychological Adjustment in Mothers of Children with Autism Spectrum Disorder. Chapel Hill: University of North Carolina.
Portway, S.M., & Johnson, B. (2005). ‘Do you know I have Asperger’s syndrome? Risks of a nonobvious disability. Health, Risk and Society, 7(1), 73–83.
Pottie, C. G., & Ingram, K. M. (2008). Daily stress, coping, and well-being in parents of children with autism: A multilevel modelling approach. Journal of Family Psychology, 22(6), 844–864.
Rao, R. A., & Beidel, D. G. (2009). The impact of children with high-functioning autism on parental stress, sibling adjustment, and family functioning. Behavior Modification, 33,437–451.
Rizk, S., Pizur-Barnekow, K.,& Darragh, A. R. (2011). Leisure and social participation and health-related quality of life in caregivers of children with autism. OTJR: Occupation, Participation and Health, 31(4), 164–171.
Shalock, R. L. (2000). Three decades of Quality of Life. In M. L. Wehmeyer and J. R. Patton (Eds.), Mental Retardation in 21st century (pp. 335–356). Autism, TX: PRO – ED.
Sipos, R., Predescu, E., Muresan, G., & Iftene, F. (2012). The evaluation of family quality of life of children with autism spectrum disorder and attention deficit hyperactive disorder. Applied Medical Informatics, 30 (1), 1–8.
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.
Taylor-Richardson, K. D., Heflinger, C. A., & Brown, T. N. (2006). Experience of strain among types of caregivers responsibilities for children with serious emotional and behavioral disorders. Journal of Emotional and Behavioral Disorders, 14, 157–168.
Tomanik, S., Harris, G.E., & Hawkins, J. (2004). The relationship between behaviors exhibited by children with autism and maternal stress. Journal of Intellectual & Developmental Disability, 29(1), 16–26.
Tung, L. C., Huang, C. Y., Tseng, M. H., Yen, H. C., Tsai, Y. P., Lin, Y. C., & Chen, K. L. (2014). Correlates of health-related quality of life and the perception of its importance in caregivers of children with autism. Research in Autism Spectrum Disorders, 8, 1235–1242.
Unala, H., Gencosmanoglu, B., Akgun, K., Karamehmetoglu, S., Tuna, H., Ones, K., et al. (2001). Quality of Life of primary caregivers of spinal cord injury survivors living in the community: controlled study with short form – 36 questionnaire. Spinal Cord, 39(6), 318–322.
Volkmar, F.R., & Klin,A. (2000).Diagnostic issues in Asperger syndrome. In, A. Klin,, F.R. Volkmar, &, S.S. Sparrow (Eds.), Asperger syndrome (pp. 25–71). New York: Guilford Press.
WHOQOL Group (1995). The World Health Organization Quality of Life Assessment (WHOQOL): Position paper from the World Health Organization. Soc Sci Med, 41, 1403–1409.
WHOQOL Group (1998). The World Health Organization Quality of Life Assessment (WHOQOL): Development and general psychometric properties. Soc Sci Med, 46, 1569–1585.
Wong, F. K. D., & Poon, A. (2010). Cognitive behavioural group treatment for Chinese parents with children with developmental disabilities in Melbourne, Australia: An efficacy study. Australian and New Zealand Journal of Psychiatry, 44(8), 742–749.
Yamada, A., Kato, M., Suzuki, M., Suzuki, M., Watanabe, N., Akechi, T., et al. (2012). Quality of life of parents raising children with pervasive developmental disorders. BMC Psychiatry, 12, 119–127.