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19-05-2017 | Original Paper | Uitgave 8/2017

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

Tijdschrift:: Journal of Autism and Developmental Disorders > Uitgave 8/2017

Auteurs:: Christina N. Marsack, Preethy S. Samuel

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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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Meer informatie

Abramson, T. A. (2015). Older adults: The “Panini Sandwich” generation. Clinical Gerontologist, 38(4), 251–267. doi: 10.1080/07317115.2015.1032466. CrossRef

Altiere, M. J., & von Kluge, S. (2009). Searching for acceptance: Challenges encountered while raising a child with autism. Journal of Intellectual and Developmental Disabilities, 34(2), 142–152. doi: 10.1080/13668250902845202. CrossRef

Antezana, L., Scarpa, A., Valdespino, A., Albright, J., & Richey, J. A. (2017). Rural trends in diagnosis and services for autism spectrum disorder. Frontiers in Psychology, 8. doi: 10.3389/fpsyg.2017.00590. PubMedPubMedCentral

Blanche, E. I., Diaz, J., Barretto, T., & Cermak, S. A. (2015). Caregiving experiences of Latino families with children with autism spectrum disorder. American Journal of Occupational Therapy, 69(5), 1–11. doi: 10.5014/ajot.2015.017848. CrossRef

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

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

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.

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

Center for Disease Control and Prevention (2015). Chronic disease and health promotion. Retrieved from http://www.cdc.gov/chronicdisease/overview/index.htm.

Chamak, B., & Bonniau, B. (2016). Trajectories, long-term outcomes and family experiences of 76 adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(3), 1084–1095. doi: 10.1007/s10803-015-2656-6. CrossRefPubMed

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

Cidav, Z., Marcus, S. C., & Mandell, D. S. (2012). Implications of childhood autism for parental employment and earnings. Pediatrics, 129(4), 617–623. doi: 10.1542/peds.2011-2700. CrossRefPubMedPubMedCentral

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

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

Douma, J. C. H., Dekker, M. C., & Koot, H. M. (2006). Supporting parents of youths with intellectual disabilities and psychopathology. Journal of Intellectual Disability Research, 50(8), 570–581. doi: 10.1111/j.1365-2788.2006.00825.x. 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

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

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

Fletcher, P. C., Markoulakis, R., & Bryden, P. J. (2012). The costs of caring for a child with an autism spectrum disorder. Issues in Comprehensive Pediatric Nursing, 35(1), 45–69. doi: 10.3109/01460862.2012.645407. CrossRefPubMed

Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs, NJ: Prentice-Hall, Inc.

Gouin, J., Scarcello, S., Paquin, C., Thaw, A., & Barker, E. (2013). 98. Circulating C-reactive protein and daily feelings of fatigue among parents of children with an autism spectrum disorder. Brain, Behavior, and Immunity, 32, e28. doi: 10.1016/j.bbi.2013.07.110. CrossRef

Heller, T., Gibbons, H., & Fisher, D. (2015). Caregiving and family support interventions: Crossing networks of aging and developmental disabilities. Intellectual and Developmental Disabilities, 53(5), 329–345. doi: 10.1352/1934-9556-53.5.329. 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

Howlin, P., & Moss, P. (2012). Adults with autism spectrum disorders. The Canadian Journal of Psychiatry, 57(5), 275–283. doi: 10.1007/s10803-010-1070-3. PubMed

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

Kenny, D. (2016). Mediation analysis. Retrieved from http://davidakenny.net/cm/mediate.htm.

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

Krauss, M. W., Seltzer, M. M., & Jacobson, H. T. (2005). Adults with autism living at home or in non-family settings: Positive and negative aspects of residential status. Journal of Intellectual Disability Research, 49(Pt 2), 111–124. doi: 10.1111/j.1365-2788.2004.00599.x. CrossRefPubMed

Lazarus, R., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer.

Maynard, J. (2015). Preparing for the ‘Autism Tsunami’: How will U.S. help autistic children transitioning to adulthood? Retrieved from http://www.techtimes.com/articles/26106/20150112/preparing-for-the-autism-tsunami-how-will-u-s-help-autistic-children-transitioning-to-adulthood.htm.

Meltzer, L. J. (2008). Brief report: Sleep in parents of children with autism spectrum disorders. Journal of Pediatric Psychology, 33(4), 380–386. doi: 10.1093/jpepsy/jsn005. CrossRefPubMed

Mendoza, T. S., & Dickson, G. L. (2010). Levels of stress among parents who have children diagnosed with autism in the United States-Mexico borders region. The Border Walking Journal, 8(1), 12–20. Retrieved from http://alliance.education.nmsu.edu/files/2013/10/borderwalkingjournal-final.pdf#page=14.

Miller, D. A. (1981). The ‘sandwich’ generation: Adult children of the aging. Social Work, 26(5), 419–423.

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

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

Monat, A., & Lazarus, R. (1985). Stress and coping: An anthology (2nd edn.). New York: Columbia University Press.

Montes, G., & Halterman, J. S. (2007). Psychological functioning and coping among mothers of children with autism: A population-based study. Pediatrics, 119(5), e1040–e1046. doi: 10.1542/peds.2006-2819. CrossRefPubMed

Montes, G., & Halterman, J. S. (2008). Association of childhood autism spectrum disorders and loss of family income. Pediatrics, 121(4), e821–e826. doi: 10.1542/peds.2007-1594. CrossRefPubMed

Moodie-Dyer, A., Joyce, H. D., Anderson-Butcher, D., & Hoffman, J. (2014). Parent–caregiver experiences with the autism spectrum disorder service delivery system. Journal of Family Social Work, 17(4), 344–362. doi: 10.1080/10522158.2014.903581. 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

Novak, M., & Guest, C. (1989). Application of a multidimensional caregiver burden inventory. The Gerontologist, 29(6), 798–803. doi: 10.1093/geront/29.6.798. CrossRefPubMed

Nurullah, A. S. (2013). “It’s really a roller coaster”: Experience of parenting children with developmental disabilities. Marriage and Family Review, 49(5), 412–445. doi: 10.1080/01494929.2013.768320. CrossRef

Olshevski, J., Katz, A., & Knight, B. (1999). Stress reduction for caregivers. Ann Arbor, MI: Brunner/Mazel.

Phelps, K. W., Hodgson, J. L., McCammon, S. L., & Lamson, A. L. (2009). Caring for an individual with autism disorder: A qualitative analysis. Journal of Intellectual and Developmental Disability, 34(1), 27–35. doi: 10.1080/13668250802690930. CrossRefPubMed

Piazza, V. E., Floyd, F. J., Mailick, M. R., & Greenberg, J. S. (2014). Coping and psychological health of aging parents of adult children with developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 119(2), 186–198. doi: 10.1352/1944-7558-119.2.186. CrossRefPubMedPubMedCentral

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

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

Russell, G., & Norwich, B. (2012). Dilemmas, diagnosis and de-stigmatization: Parental perspectives on the diagnosis of autism spectrum disorders. Clinical Child Psychology and Psychiatry, 17(2), 229–245. doi: 10.1177/1359104510365203. CrossRefPubMed

Samuel, S. S., Hobden, K. L., LeRoy, B. W., & Lacey, K. K. (2012). Analysing family service needs of typically underserved families in the USA. Journal of Intellectual Disability Research, 56(1), 111–128. doi: 10.1111/j.1365-2788.2011.01481.x. CrossRefPubMed

Siklos, S., & Kerns, K. (2006). Assessing need for social support in parents of children with Autism and Down syndrome. Journal of Autism and Developmental Disorders, 36(7), 921–933. doi: 10.1007/s10803-006-0129-7. CrossRefPubMed

Smith, L. E., Greenberg, J. S., & Seltzer, M. M. (2012). Social support and well-being at mid-life among mothers of adolescents and adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42(9), 1818–1826. doi: 10.1007/s10803-011-1420-9. CrossRefPubMedPubMedCentral

Thomas, K. C., Ellis, A. R., McLaurin, C., Daniels, J., & Morrissey, J. P. (2007). Access to care for autism-related services. Journal of Autism and Developmental Disorders, 37(10), 1902–1912. doi: 10.1007/s10803-006-0323-7. 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

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

Viner, R. (1999). Putting stress in life: Hans Selye and the making of the stress theory. Social Studies of Science, 29(3), 391–410. doi: 10.1177/030631299029003003. 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: 10.1080/10522150902874842. CrossRef

Woodgate, R. L., Ateah, C., & Secco, L. (2008). Living in a world of our own: The experience of parents who have a child with autism. Qualitative Health Research, 18(8), 1075–1083. doi: 10.1177/1049732308320112. CrossRefPubMed

World Health Organization. (1996). WHOQOL—BREF: Introduction, administration, scoring and generic version of the assessment. Geneva: Author. Retrieved from http://apps.who.int/iris/handle/10665/63529.

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

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

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
DOI: https://doi.org/10.1007/s10803-017-3157-6
Uitgeverij: Springer US
Tijdschrift: Journal of Autism and Developmental Disorders
Uitgave 8/2017
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432

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