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Gepubliceerd in: Journal of Autism and Developmental Disorders 8/2017

19-05-2017 | Original Paper

Mediating Effects of Social Support on Quality of Life for Parents of Adults with Autism

Auteurs: Christina N. Marsack, Preethy S. Samuel

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 8/2017

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Abstract

The aim of this study was to examine the mediating effect of formal and informal social support on the relationship of caregiver burden and quality of life (QOL), using a sample of 320 parents (aged 50 or older) of adult children with autism spectrum disorder (ASD). Multiple linear regression and mediation analyses indicated that caregiver burden had a negative impact on QOL and that informal social support partially mediated the relationship between caregiver burden and parents’ QOL. Formal social support did not mediate the relationship between caregiver burden and QOL. The findings underscored the need to support aging parents of adult children with ASD through enhancing their informal social support networks.

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Literatuur
go back to reference Boehm, T. L., Carter, E. W., & Taylor, J. L. (2015). Family quality of life during the transition to adulthood for individuals with intellectual disability and/or autism spectrum disorders. American Journal on Intellectual and Developmental Disabilities, 120(5), 395–411. CrossRefPubMed Boehm, T. L., Carter, E. W., & Taylor, J. L. (2015). Family quality of life during the transition to adulthood for individuals with intellectual disability and/or autism spectrum disorders. American Journal on Intellectual and Developmental Disabilities, 120(5), 395–411. CrossRefPubMed
go back to reference Burke, M., & Heller, T. (2016). Individual, parent and social-environmental correlates of caregiving experiences among parents of adults with autism spectrum disorder. Journal of Intellectual Disability Research, 60(5), 401–411. doi: 10.​1111/​jir.​12271. CrossRefPubMed Burke, M., & Heller, T. (2016). Individual, parent and social-environmental correlates of caregiving experiences among parents of adults with autism spectrum disorder. Journal of Intellectual Disability Research, 60(5), 401–411. doi: 10.​1111/​jir.​12271. CrossRefPubMed
go back to reference Carstensen, L. L. (1991). Selectivity theory: Social activity in life-span context. In K. W. Schaie & M. P. Lawton (Eds.), Annual review of gerontology and geriatrics, (vol. 11, pp 195–217). New York: Springer Publishing Co. Carstensen, L. L. (1991). Selectivity theory: Social activity in life-span context. In K. W. Schaie & M. P. Lawton (Eds.), Annual review of gerontology and geriatrics, (vol. 11, pp 195–217). New York: Springer Publishing Co.
go back to reference Caserta, M. S., Lund, D. A., & Wright, S. D. (1996). Exploring the caregiver burden inventory (CBI): Further evidence for a multidimensional view of burden. International Journal of Aging and Human Development, 43(1), 21–34. doi: 10.​2190/​2DKF-292P-A53W-W0A8. CrossRefPubMed Caserta, M. S., Lund, D. A., & Wright, S. D. (1996). Exploring the caregiver burden inventory (CBI): Further evidence for a multidimensional view of burden. International Journal of Aging and Human Development, 43(1), 21–34. doi: 10.​2190/​2DKF-292P-A53W-W0A8. CrossRefPubMed
go back to reference Chou, K. R., Chu, H., Tseng, C. L., & Lu, R. B. (2003). The measurement of caregiver burden. Journal of Medical Sciences, 23(2), 73–82 Chou, K. R., Chu, H., Tseng, C. L., & Lu, R. B. (2003). The measurement of caregiver burden. Journal of Medical Sciences, 23(2), 73–82
go back to reference Cowan, M. J., Freedland, K. E., Burg, M. M., Saab, P. G., Youngblood, M. E., Cornell, C. E., et al. (2007). Predictors of treatment response for depression and inadequate social support—The ENRICHD randomized clinical trial. Psychotherapy and Psychosomatics, 77(1), 27–37. doi: 10.​1159/​000110057. CrossRefPubMed Cowan, M. J., Freedland, K. E., Burg, M. M., Saab, P. G., Youngblood, M. E., Cornell, C. E., et al. (2007). Predictors of treatment response for depression and inadequate social support—The ENRICHD randomized clinical trial. Psychotherapy and Psychosomatics, 77(1), 27–37. doi: 10.​1159/​000110057. CrossRefPubMed
go back to reference Croen, L. A., Zerbo, O., Qian, Y., Massolo, M. L., Rich, S., Sidney, S., & Kripke, C. (2015). The health status of adults on the autism spectrum. Autism: The International Journal of Research and Practice, 19(7), 814–823. doi: 10.​1177/​1362361315577517​. CrossRef Croen, L. A., Zerbo, O., Qian, Y., Massolo, M. L., Rich, S., Sidney, S., & Kripke, C. (2015). The health status of adults on the autism spectrum. Autism: The International Journal of Research and Practice, 19(7), 814–823. doi: 10.​1177/​1362361315577517​. CrossRef
go back to reference Ekas, N., Whitman, T., & Shivers, C. (2009). Religiosity, spirituality, and socioemotional functioning in mothers of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 39(5), 706–719. doi: 10.​1007/​s10803-008-0673-4. CrossRefPubMed Ekas, N., Whitman, T., & Shivers, C. (2009). Religiosity, spirituality, and socioemotional functioning in mothers of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 39(5), 706–719. doi: 10.​1007/​s10803-008-0673-4. CrossRefPubMed
go back to reference Ekmann, A., Petersen, I., Mänty, M., Christensen, K., & Avlund, K. (2013). Fatigue, general health, and ischemic heart disease in older adults. The Journals of Gerontology Series A: Biological Sciences and Medical Sciences, 68(3), 279–285. doi: 10.​1093/​gerona/​gls180. CrossRef Ekmann, A., Petersen, I., Mänty, M., Christensen, K., & Avlund, K. (2013). Fatigue, general health, and ischemic heart disease in older adults. The Journals of Gerontology Series A: Biological Sciences and Medical Sciences, 68(3), 279–285. doi: 10.​1093/​gerona/​gls180. CrossRef
go back to reference Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X. H., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism: The International Journal of Research and Practice, 13(4), 375–387. doi: 10.​1177/​1362361309105658​. CrossRef Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X. H., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism: The International Journal of Research and Practice, 13(4), 375–387. doi: 10.​1177/​1362361309105658​. CrossRef
go back to reference Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs, NJ: Prentice-Hall, Inc. Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs, NJ: Prentice-Hall, Inc.
go back to reference Hines, M., Balandin, S., & Togher, L. (2014). The stories of older parents of adult sons and daughters with Autism: A balancing act. Journal of Applied Research in Intellectual Disabilities, 27(2), 163–173. doi: 10.​1111/​jar.​12063. CrossRefPubMed Hines, M., Balandin, S., & Togher, L. (2014). The stories of older parents of adult sons and daughters with Autism: A balancing act. Journal of Applied Research in Intellectual Disabilities, 27(2), 163–173. doi: 10.​1111/​jar.​12063. CrossRefPubMed
go back to reference James, N. (2013). The formal support experiences of family carers of people with an intellectual disability who also display challenging behaviour and/or mental health issues What do carers say? Journal of Intellectual Disabilities, 17(1), 6–23. doi: 10.​1177/​1744629512472610​. CrossRefPubMed James, N. (2013). The formal support experiences of family carers of people with an intellectual disability who also display challenging behaviour and/or mental health issues What do carers say? Journal of Intellectual Disabilities, 17(1), 6–23. doi: 10.​1177/​1744629512472610​. CrossRefPubMed
go back to reference Kinnear, S. H., Link, B. G., Ballan, M. S., & Fischbach, R. L. (2016). Understanding the experience of stigma for parents of children with autism spectrum disorder and the role stigma plays in families’ lives. Journal of Autism and Developmental Disorders, 46(3), 942–953. doi: 10.​1007/​s10803-015-2637-9. CrossRefPubMed Kinnear, S. H., Link, B. G., Ballan, M. S., & Fischbach, R. L. (2016). Understanding the experience of stigma for parents of children with autism spectrum disorder and the role stigma plays in families’ lives. Journal of Autism and Developmental Disorders, 46(3), 942–953. doi: 10.​1007/​s10803-015-2637-9. CrossRefPubMed
go back to reference Lazarus, R., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer. Lazarus, R., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer.
go back to reference Miller, D. A. (1981). The ‘sandwich’ generation: Adult children of the aging. Social Work, 26(5), 419–423. Miller, D. A. (1981). The ‘sandwich’ generation: Adult children of the aging. Social Work, 26(5), 419–423.
go back to reference Miller, S. M., Chan, F., Ferrin, J. M., Lin, C.-P., & Chan, J. Y. C. (2008). Confirmatory factor analysis of the World Health Organization quality of life questionnaire—Brief version for individuals with spinal cord injury. Rehabilitation Counseling Bulletin, 51(4), 221–228. doi: 10.​1177/​0034355208316806​. CrossRef Miller, S. M., Chan, F., Ferrin, J. M., Lin, C.-P., & Chan, J. Y. C. (2008). Confirmatory factor analysis of the World Health Organization quality of life questionnaire—Brief version for individuals with spinal cord injury. Rehabilitation Counseling Bulletin, 51(4), 221–228. doi: 10.​1177/​0034355208316806​. CrossRef
go back to reference Mitchell, P. H., Powell, L., Blumenthal, J., Norten, J., Ironson, G., Pitula, C. R., et al. (2003). A short social support measure for patients recovering from myocardial infarction: The ENRICHD Social Support Inventory. Journal of Cardiopulmonary Rehabilitation, 23(6), 398–403. CrossRefPubMed Mitchell, P. H., Powell, L., Blumenthal, J., Norten, J., Ironson, G., Pitula, C. R., et al. (2003). A short social support measure for patients recovering from myocardial infarction: The ENRICHD Social Support Inventory. Journal of Cardiopulmonary Rehabilitation, 23(6), 398–403. CrossRefPubMed
go back to reference Monat, A., & Lazarus, R. (1985). Stress and coping: An anthology (2nd edn.). New York: Columbia University Press. Monat, A., & Lazarus, R. (1985). Stress and coping: An anthology (2nd edn.). New York: Columbia University Press.
go back to reference 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. doi: 10.​1016/​j.​rasd.​2009.​01.​004. CrossRef 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. doi: 10.​1016/​j.​rasd.​2009.​01.​004. CrossRef
go back to reference Olshevski, J., Katz, A., & Knight, B. (1999). Stress reduction for caregivers. Ann Arbor, MI: Brunner/Mazel. Olshevski, J., Katz, A., & Knight, B. (1999). Stress reduction for caregivers. Ann Arbor, MI: Brunner/Mazel.
go back to reference Poslawsky, I. E., Naber, F. B., Van Daalen, E., & Van Engeland, H. (2014). Parental reaction to early diagnosis of their children’s autism spectrum disorder: An exploratory study. Child Psychiatry and Human Development, 45(3), 294–305. doi: 10.​1007/​s10578-013-0400-z. CrossRefPubMed Poslawsky, I. E., Naber, F. B., Van Daalen, E., & Van Engeland, H. (2014). Parental reaction to early diagnosis of their children’s autism spectrum disorder: An exploratory study. Child Psychiatry and Human Development, 45(3), 294–305. doi: 10.​1007/​s10578-013-0400-z. CrossRefPubMed
go back to reference Robinson, S., Weiss, J., Lunsky, Y., & Ouellette-Kuntz, H. (2016). Informal support and burden among parents of adults with intellectual and/or developmental disabilities. Journal of Applied Research in Intellectual Disabilities: JARID, 29, 356–365. doi: 10.​1111/​jar.​12184. CrossRefPubMed Robinson, S., Weiss, J., Lunsky, Y., & Ouellette-Kuntz, H. (2016). Informal support and burden among parents of adults with intellectual and/or developmental disabilities. Journal of Applied Research in Intellectual Disabilities: JARID, 29, 356–365. doi: 10.​1111/​jar.​12184. CrossRefPubMed
go back to reference Totsika, V., Felce, D., Kerr, M., & Hastings, R. P. (2010). Behavior problems, psychiatric symptoms, and quality of life for older adults with intellectual disability with and without autism. Journal of Autism and Developmental Disorders, 40(10), 1171–1178. doi: 10.​1007/​s10803-010-0975-1. CrossRefPubMed Totsika, V., Felce, D., Kerr, M., & Hastings, R. P. (2010). Behavior problems, psychiatric symptoms, and quality of life for older adults with intellectual disability with and without autism. Journal of Autism and Developmental Disorders, 40(10), 1171–1178. doi: 10.​1007/​s10803-010-0975-1. CrossRefPubMed
go back to reference Vaglio, J., Conard, M, Poston, W. S., O’Keefe, J., Haddock, C. K., House, J., Spertus, J. A. (2004). Testing the performance of the ENRICHD social support instrument in cardiac patients. Health and Quality of Life Outcomes, 2(1), 1–5. doi: 10.​1186/​1477-7525-2-24. CrossRef Vaglio, J., Conard, M, Poston, W. S., O’Keefe, J., Haddock, C. K., House, J., Spertus, J. A. (2004). Testing the performance of the ENRICHD social support instrument in cardiac patients. Health and Quality of Life Outcomes, 2(1), 1–5. doi: 10.​1186/​1477-7525-2-24. CrossRef
go back to reference Wang, M., & Brown, R. (2009). Family quality of life: A framework for policy and social service provisions to support families of children with disabilities. Journal of Family Social Work, 12(2), 144–167. doi: 10.​1080/​1052215090287484​2. CrossRef Wang, M., & Brown, R. (2009). Family quality of life: A framework for policy and social service provisions to support families of children with disabilities. Journal of Family Social Work, 12(2), 144–167. doi: 10.​1080/​1052215090287484​2. CrossRef
go back to reference Wright, S. D., Brooks, D. E., D’Astous, V., & Grandin, T. (2013). The challenge and promise of autism spectrum disorders in adulthood and aging: A systematic review of the literature (1990–2013). Autism Insights 5, 21–73. doi: 10.​4137/​AUI.​S11072. CrossRef Wright, S. D., Brooks, D. E., D’Astous, V., & Grandin, T. (2013). The challenge and promise of autism spectrum disorders in adulthood and aging: A systematic review of the literature (1990–2013). Autism Insights 5, 21–73. doi: 10.​4137/​AUI.​S11072. CrossRef
go back to reference Zablotsky, B., Bradshaw, C. P., & Stuart, E. A. (2013). The association between mental health, stress, and coping supports in mothers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(6), 1380–1393. doi: 10.​1007/​s10803-012-1693-7. CrossRefPubMed Zablotsky, B., Bradshaw, C. P., & Stuart, E. A. (2013). The association between mental health, stress, and coping supports in mothers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(6), 1380–1393. doi: 10.​1007/​s10803-012-1693-7. CrossRefPubMed
Metagegevens
Titel
Mediating Effects of Social Support on Quality of Life for Parents of Adults with Autism
Auteurs
Christina N. Marsack
Preethy S. Samuel
Publicatiedatum
19-05-2017
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 8/2017
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-017-3157-6