Hostname: page-component-8448b6f56d-c47g7 Total loading time: 0 Render date: 2024-04-24T11:03:31.260Z Has data issue: false hasContentIssue false
  • English
  • Français

Stress, Resiliency Factors, Quality of Life Among Caregivers of Children with High Functioning Autism Spectrum Disorders (HFASDs)

Published online by Cambridge University Press:  04 July 2012

Gloria K. Lee ,
Christopher Lopata ,
Martin A. Volker ,
Marcus L. Thomeer ,
Jennifer A. Toomey ,
Jonathan D. Rodgers ,
Audrey M. Smerbeck ,
Audrey L. Schiavo  and
Christin A. McDonald
Gloria K. Lee*
Affiliation:
University at Buffalo — the State University of New York, Buffalo, NY, USA
Christopher Lopata
Affiliation:
Institute for Autism Research, Canisius College, Buffalo, USA
Martin A. Volker
Affiliation:
University at Buffalo — the State University of New York, Buffalo, NY, USA
Marcus L. Thomeer
Affiliation:
Institute for Autism Research, Canisius College, Buffalo, USA
Jennifer A. Toomey
Affiliation:
Summit Educational Resources, Getzville, NY, USA
Jonathan D. Rodgers
Affiliation:
University at Buffalo — the State University of New York, Buffalo, NY, USA
Audrey M. Smerbeck
Affiliation:
University at Buffalo — the State University of New York, Buffalo, NY, USA
Audrey L. Schiavo
Affiliation:
Summit Educational Resources, Getzville, NY, USA
Christin A. McDonald
Affiliation:
University at Buffalo — the State University of New York, Buffalo, NY, USA
*
Address for correspondence: Gloria K. Lee, PhD, Department of Counseling, School & Educational Psychology, University at Buffalo — the State University of New York, Buffalo, NY, USA. E-mail: glee4@buffalo.edu
Get access

Abstract

This study investigated the relationships among stress, intrapersonal resiliency factors (self-esteem, locus of control, and optimism) and quality of life [QOL] (physical health and mental health) among caregivers of children with high functioning autism spectrum disorders (HFASDs). Participants consisted of 113 caregivers of children with HFASDs (males = 38.1%, females = 61.9%; age range = 27–62; 93.6% Caucasians) and 47 caregivers of typically developing children (males = 29.8%; females = 70.2%; age range = 30–56; 93.3% Caucasians). They completed a set of self-rating surveys on perceived locus of control, self-esteem, optimism, and QOL. Within-group inferential statistical analyses were applied. For the HFASD group analyses, two simultaneous regression analyses were used to study the independent effects of the three intrapersonal variables on the physical health and mental health QOL of the caregivers. Intrapersonal factors predicted self-reported mental health QOL but not physical health QOL in caregivers of children with HFASDs.

Keywords

resiliency factorsquality of lifecaregiverschildren with HFASDs
Type
Articles
Information
The Australian Journal of Rehabilitation Counselling , Volume 18 , Issue 1 , July 2012 , pp. 25 - 36
Copyright
Copyright © Cambridge University Press 2012

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text revision). Washington, DC: American Psychiatric Association.Google Scholar
American Psychological Association (APA) Help Center. (2004) The road to resilience. Retrieved from http://www.apa.org/helpcenter/road-resilience.aspxGoogle Scholar
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.CrossRefGoogle ScholarPubMed
Berthoz, S., & Hill, E.L. (2005). The validity of using self-reports to assess emotion regulation abilities in adults with autism spectrum disorder. European Psychiatry, 20, 291–298.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
Ekas, N., Lickenbrock, D.M., & Whitman, T.L. (2010). Optimism, social support, and well-being in mothers of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 40 (10), 1274–1284.CrossRefGoogle ScholarPubMed
Hall, L.E. (1995) Parental internal attributes as factors in family adaptation to a child with a disability (Unpublished doctoral dissertation). University of Alberta, Canada.Google Scholar
Hassall, R., Rose, J., & McDonald, J. (2005). Parenting stress in mothers of children with an intellectual disability: The effects of parental cognitions in relation to child characteristics and family support. Journal of Intellectual Disability Research, 49, 405–418.CrossRefGoogle ScholarPubMed
Hastings, R.P. (2003). Child behavior problems and partner mental health as correlates of stress in mothers and fathers of children with autism. Journal of Intellectual Disability Research, 47, 231–237.CrossRefGoogle ScholarPubMed
Hastings, R.P., Kovshoff, H., Brown, T., Ward, N.J., Espinosa, F.D., & Remington, B. (2005). Coping strategies in mothers and fathers of preschool and school-age children with autism. Autism, 9 (4), 377–391.CrossRefGoogle ScholarPubMed
Jones, J., & Passey, J. (2004). Family adaptation, coping and resources: Parents of children with developmental disabilities and behaviour problems. Journal on Developmental Disabilities, 11 (1), 31–46.Google Scholar
Klin, A., & Volkmar, F.R. (2000). Treatment and intervention guidelines for individuals with Aspergers syndrome. In Klin, A., Volkmar, F.R., & Sparrow, S.S. (Eds.), Asperger's syndrome (pp. 340–366). New York: Guilford.Google Scholar
Koegel, R.L., Koegel, L.K., & Schreibman, L. (1991). Assessing and training parents in teaching pivotal behaviors. Advances in Behavioral Assessment of Children and Families, 5, 65–82.Google Scholar
Konstantareas, M.M. & Papageorgiou, V. (2003). Effects of temperament, symptom severity and level of functioning on maternal stress in Greek children and youth with ASD. Autism, 10 (6), 593–607.CrossRefGoogle Scholar
Lainhart, J.E. (1999). Psychiatric problems in individuals with autism, their parents and siblings. International Review of Psychiatry, 11, 278–298.CrossRefGoogle Scholar
Lee, G.K. (2009). Fathers and mothers of children with high functioning autism: How well do they cope and adjust? Journal of Developmental and Physical Disabilities, 21 (2), 93–114.CrossRefGoogle Scholar
Lee, G.K., Berry, C., Lopata, C., Volker, M.A., Thomeer, M., Nida, R., & Rodgers, J. (in press). Psychosocial adjustment of caregivers of children with high functioning autism spectrum disorders. In Columbus, F. (Ed.), Advances in psychology research. Hauppauge, NY: NOVA Science Publishers.Google Scholar
Lee, G.K., Lopata, C., Volker, M.A., Thomeer, , Nida, R., Toomey, J., Chow, S., & Smerbeck, A. (2009). Health-related quality of life of parents of children with high functioning autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 24 (1), 227–239.CrossRefGoogle Scholar
Little, L. (2002). Differences in stress and coping for mothers and fathers of children with Asperger's syndrome and nonverbal learning disorders. Pediatric Nursing, 28, 565–570.Google ScholarPubMed
Lloyd, T., & Hastings, S.R. (2009). Parental locus of control and psychological well-being in mothers of children with intellectual disability. Journal of Intellectual & Developmental Disability, 34 (2), 104–115.CrossRefGoogle ScholarPubMed
Lopata, C., Thomeer, M.L., Volker, M.A., Nida, R.E., & Lee, G.K. (2008). Effectiveness of a manualized summer social treatment program for high-functioning children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 38 (5), 890–904.CrossRefGoogle ScholarPubMed
Manuel, C.J. (2001). Risk and resistance factors in the adaptation in mothers of children with juvenile rheumatoid arthritis. Journal of Pediatrics and Psychology, 26, 237–246.CrossRefGoogle ScholarPubMed
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 Volkmar, F.R., Paul, R., Klin, A., & Cohen, D. (Eds.), Handbook of autism and pervasive developmental disorders: Vol. 2. Assessment, interventions, and policy (3rd ed., pp. 977–1002). Hoboken, NJ: John Wiley & Sons.CrossRefGoogle Scholar
McLean, L.A., Harvey, D.H.P., Pallant, J.F., Bartlett, J.R., & Mutimer, K.L.A. (2004). Adjustment of mothers of children with obstetrical brachial plexus injuries: Testing a risk and resistance model. Rehabilitation Psychology, 49 (3), 233–240.CrossRefGoogle Scholar
Milgram, N.A., & Atzil, M. (1988). Parenting stress in raising autistic children. Journal of Autism and Developmental Disorders, 18 (3), 415–424.CrossRefGoogle ScholarPubMed
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, 1–9.CrossRefGoogle ScholarPubMed
Pakenham, K.I., Samios, C., & Sofronoff, K. (2005). Adjustment in mothers of children with Asperger syndrome: An application of the double ABCX model of family adjustment. Autism, 9, 191–212.CrossRefGoogle ScholarPubMed
Pakenham, K.I., Sofronoff, K., & Samios, C. (2004). Finding meaning in parenting a child with Asperger syndrome: Correlates of sense making and benefit finding. Research in Developmental Disabilities, 25, 245–264.CrossRefGoogle ScholarPubMed
Pallant, J.F. (2000). Validation of a scale to measure perceived control of internal states. Journal of Personality Assessment, 75 (2), 308–337.CrossRefGoogle ScholarPubMed
Portway, S.M., & Johnson, B. (2005). ‘Do you know I have Asperger's syndrome? Risks of a non-obvious disability. Health, Risk and Society, 7 (1), 73–83.CrossRefGoogle Scholar
Rosenberg, M. (1965). Society and the adolescent self-image. Princeton, NJ: Princeton University Press.CrossRefGoogle Scholar
Scheier, M.F., & Carver, C.S. (1985). Optimism, coping and health: Assessment and implication of generalized outcome expectancies. Health Psychology, 4, 219–247.CrossRefGoogle ScholarPubMed
Scheier, M.F., & Carver, C.S. (1987). Dispositional optimism and physical well-being: The influence of generalized outcome expectancies on health. Journal of Personality, 55, 169–210.CrossRefGoogle ScholarPubMed
Sinclair, S.J., Blais, M.A., Gansler, D.A., Sandberg, E., Bistis, K., & LoCicero, A. (2010). Psychometric properties of the Rosenberg Self-Esteem Scale: Overall and across demographic groups living within the United States. Evaluation and the Health Professions 33 (1), 56–80.CrossRefGoogle ScholarPubMed
Singer, G.H.S., & Powers, L.E. (1993). Contributing to resilience in families: An Overview. In Singer, G.H. & Powers, L.E. (Eds.), Families, disability, and empowerment: Active coping skills and strategies for family interventions (pp. 1–26). Baltimore: Brookes.Google Scholar
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.CrossRefGoogle Scholar
Trute, B., Hiebert-Murphy, D., & Levine, K. (2007). Parental appraisal of the family impact of childhood developmental disability: Times of sadness and times of joy. Journal of Intellectual & Developmental Disability, 32 (1), 1–9.CrossRefGoogle ScholarPubMed
Tsatsanis, K.D., Foley, C., & Donehower, C. (2004). Contemporary outcome research and programming guidelines for Asperger syndrome and high-functioning autism. Topics in Language Disorders, 24, 249–259.CrossRefGoogle Scholar
Volkmar, F.R., & Klin, A. (2000). Diagnostic issues in Asperger syndrome. In Klin, A., Volkmar, F.R., & Sparrow, S.S. (Eds.), Asperger syndrome (pp. 25–71). New York: Guilford Press.Google Scholar
Ware, J.E., Keller, S.D., Gandek, B., Brazier, J.E., & Sullivan, M. (1995). Evaluating translations of health status questionnaires: Methods from the IQOLA Project. International Journal of Technology Assessment and Health Care, 11 (3), 525–551.CrossRefGoogle ScholarPubMed
WareJ.E., Jr. J.E., Jr., & Sherbourne, C.D. (1992). The MOS 36-item Short-Form Health Survey (SF-36): I. Conceptual framework and item selection. Medical Care, 30, 473–483.CrossRefGoogle ScholarPubMed