Occupational patterns of parents of children with autism spectrum disorder: Revisiting Matuska and Christiansen's model of lifestyle balance

Journal of Occupational Science

Volumn 18, Issue 2, 2011, Pages 115-130

  Stein, Leah I ^a   Foran, Amanda C ^a   Cermak, Sharon ^a  

^a UNIVERSITY OF SOUTHERN CALIFORNIA   (United States)

Author keywords

Activity patterns; Autism; Family roles; Lifestyle balance; Parenthood; Time use

Indexed keywords

EID: 79958797868     PISSN: 14427591     EISSN: None     Source Type: Journal    
DOI: 10.1080/14427591.2011.575762     Document Type: Article

References (86)

1. Abbeduto, L., Seltzer, M. M., Shattuck, P., Kraus, 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 on Mental Retardation, 109, 237-254.
2. Akdemir, D., Pehlivanturk, B., Unal, E, & Ozusta, S. (2009). Comparison of attachment-related social behaviors in autistic disorder and developmental disability. Turkish Journal of Psychiatry, 20, 105-117.
3. Allik, H., Larsson, J., & Smedje, H. (2006). Sleep patterns of school-age children with Asperger Syndrome or high-functioning autism. Journal of Autism and Developmental Disorders, 36, 585-595. (Pubitemid 44336981)
4. Altiere, M. J., & von Kluge, S. (2009). Searching for acceptance: Challenges encountered while raising a child with autism. Journal of Intellectual and Developmental Disability, 34, 142-152. doi: 10.1080/13668250902845202.
5. Baker, B. L., Mclntyre, L. L., Blacher, J., Crnic, K., Edelbrock, C, & Low, C. (2003). Pre-school children with and without developmental delay: Behavior problems and parenting stress over time. Journal of Intellectual Disability Research, 47, 217-230. (Pubitemid 36773140)
6. Bayat, M. (2007). Evidence of resilience in families of children with autism. Journal of Intellectual Disability Research, 51, 702-714. doi: 10.1111/j. 1365-2788/2007.00960.X. (Pubitemid 47249746)
7. Bejerholm, U., & Eklund, M. (2004). Time use and occupational performance among persons with schizophrenia. Occupational Therapy in Mental Health, 20, 27-47. (Pubitemid 38552872)
8. Benderix, Y., Nordstrom, B., & Sivberg, B. (2007). Parents' experience of having a child with autism and learning disabilities living in a group home. Autism, 10, 629-641. doi: 10.1177/13623613070700902. (Pubitemid 44605447)
9. Benson, P. R., & Karlof, K. L. (2009). Anger, stress proliferation, and depressed mood among parents of children with ASD: A longitudinal replication. Journal of Autism and Developmental Disorders, 39, 350-362. doi: 10.1007/sl0803-008-0632-0.
10. Bishop, S. L., Richler, J., Cain, A. C, & Lord, C. (2007). Predictors of perceived negative impact in mothers of children with autism spectrum disorder. American Journal on Mental Retardation, 112, 450-461. (Pubitemid 350305117)
11. Bitterman, A., Daley, T. C, Misra, S., Carlson, E., & Markowitz, J. (2008). A national sample of preschoolers with autism spectrum disorders: Special education services and parentsatisfaction. Journal of Autism and Developmental Disorders, 38, 1509-1517. doi: 10.1007/sl0803-007-0531-9.
12. Blacher, J., & Mclntyre, L. L. (2006). Syndrome specificity and behavioural disorders in young adults with intellectual disability: Cultural differences in family impact. Journal of Intellectual Disability Research, 50, 184-198. doi:10.1111/J.1365-2788.00768.X.
13. 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, 208-215.
14. Brogan, C. A., & Knussen, C. (2003). The disclosure of a diagnosis of an autistic spectrum disorder. Autism, 7, 31-46.
15. Brummett, B. H., Babyak, M. A., Siegler, I. C, Vitaliano, P. P, Ballard, E. L., Gwyther, L. P., & Williams, R. B. (2006). Associations among perceptions of social support, negative affect, and quality of sleep in caregivers and noncare-givers. Health Psychology, 25, 220-225. doi: 10.1037/0278-6133.25.2.220.
16. Centers for Disease Control and Prevention. (2010). Autism information center: Frequently asked questions - prevalence. Retrieved February 5, 2010, fromhttp://www.cdc.gov/ncbddd/autism/faq-prevalence.htm.
17. 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. doi: 10.1007/sl0803-007-0512-z.
18. DeGrace, B. W. (2004). The everyday occupation of families with children with autism. American Journal of Occupational Therapy, 58, 543-550. (Pubitemid 39330141)
19. Dominick, K. C, Davis, N. O., Lainhart, J., Tager-Flusberg, H., & Folstein, S. (2007). Atypical behaviors in children with autism and children with a history of language impairment. Research in Developmental Disabilities, 28, 145-162. doi: 10.1016/j.ridd.2006.02.003. (Pubitemid 46274158)
20. Doo, S., & Wing, Y. K. (2006). Sleep problems of children with pervasive developmental disorders: Correlation with Darental stress. Develop-mental Medicine and Child Neurology, 48, 650-655. (Pubitemid 44044467)
21. Dunlea, A. (1996). An opportunity for co-adaptation: The experience of mothers and their infants who are blind. In R. Zemke & E Clark (Eds.), Occupational science: The evolving discipline (pp. 227-241). Philadelphia: E A. Davis.
22. Dunn, M. E., 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. (Pubitemid 33635735)
23. Eisenhower, A. S., Baker, B. L., & Blacher, J. (2005). Preschool children with intellectual disability: Syndrome specificity, behaviour problems, and maternal well-being. Journal of Intellectual Disability Research, 49, 657-671. doi: 10.1111/J.1365-2788.00699.X. (Pubitemid 41223246)
24. Ekas, N. V, Whitman, T. L., & Shivers, C. (2009). Religiosity, spirituality, and socioemotional functioning in mothers of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 39, 706-719. doi: 10.1007/S10803-008-0673-4.
25. Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism, 13, 375-387. doi: 10.1177/1362361309105658.
26. Fraits-Hunt, D., & Zemke, R. (1996). Games mothers play with their full-term and pre-term infants. In R. Zemke & E Clark (Eds.), Occupational science: The evolving discipline (pp. 217-226). Philadelphia: E A. Davis.
27. Freudenheim, M. (2004, December 21). Battling insurers over autism treatment. New York Times. Retrieved November 5, 2009, from http://www.nytimes. com/2004/12/2l/business/21autism.html.
28. Gallagher, S., Phillips, A. C, Oliver, C, & Carroll, D. (2008). Predictors of psychological morbidity in parents of children with intellectual disabilities. Journal of Pediatric Psychology, 33, 1129-1136.
29. Gray, D. E. (1997). High functioning autistic children and the construction of "normal family life". Social Science and Medicine, 44, 1097-1106. (Pubitemid 27143949)
30. Gray, D. E. (2002a). 'Everybody just freezes. Everybody is just embarrassed': Felt and en-acted stigma among parents of children with high functioning autism. Sociology of Health & Illness, 24, 734-749. (Pubitemid 36172531)
31. Gray, D. E. (2002b). Ten years on: A longitudinal study of families of children with autism. Journal of Intellectual and Developmental Disability, 27, 215-222. doi: 10.1080/J366825021000008639.
32. Gray, D. E. (2003). Gender and coping: The parents of children with high functioning autism. Social Science and Medicine, 56, 631-642. (Pubitemid 36051018)
33. Greenberg, J. S., Seltzer, M. M., Krauss, M. W., Chou, R. J., & Hong, J. (2004). The effect of quality of the relationship between mothers and adult children with schizophrenia, autism, or Down syndrome on maternal well-being: The mediating role of optimism. American Journal of Orthopsychiatry, 74, 14-25. doi: 10.1037/0002-9432.74.1.14. (Pubitemid 38173629)
34. Hakansson, C, Dahlin-Ivanoff, S., & Sonn, U. (2006). Achieving balance in everyday life. Journal of Occupational Science, 13, 74-82. (Pubitemid 43689360)
35. Hamlyn-Wright, S., Draghi-Lorenz, R., & Ellis, J. (2007). Locus of control fails to mediate between stress and anxiety and depression in parents of children with a developmental disorder. Autism, 11, 489-501. doi: 10.1177/1362361307083258. (Pubitemid 47555181)
36. Hanigsberg, J. E., & Ruddick, S. (1999). Mother troubles: Rethinking contemporary maternal dilemmas. Massachusetts: Beacon Press.
37. 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. doi: 10.1111/J.1365-2788.2005. 00673.X. (Pubitemid 40724186)
38. Hastings, R. P., Kovshoff, H., Brown, T., Ward, N.J., Espinosa, E D., & Remington, B. (2005). Coping strategies in mothers and fathers of preschool and school-age children with autism. Autism, 9, 377-391. (Pubitemid 41489546)
39. Hastings, R. P., Kovshoff, H., Ward, N. J., Espinosa, E D., Brown, T., & Remington, B. (2005). System analysis of stress and positiveperceptions in mothers and fathers of preschool children with autism. Journal of Autism and Developmental Disorders, 35, 635-644. doi: 10.1007/sl0803-005-0007-8.
40. Herring, S., Gray, K., Taffe, J., Tonge, B., Sweeney, D., & Einfeld, S. (2006). Behaviour and emotional problems in toddlers with pervasive developmental disorders and developmental delay: Associations with parental mental health and family functioning. Journal of Intellectual Disability Research, 50, 874-882. doi: 10.1111/j. 1365-2788.2006.00904.X. (Pubitemid 44697913)
41. Hutton, A. M., & Caron, S. L. (2005). Experiences of families with children with autism in rural New England. Focus on Autism and Other Developmental Disabilities, 20, 180-189.
42. Jones, J., & Passey, J. (2004). Family adaptation, coping and resources: Parents of children with developmental disabilities and behaviour problems. Journal on Developmental Disabilities, 11, 31-46.
43. Jonsson, H., & Persson, D. (2006). Towards an experiential model of occupational balance: An alternative perspective on flow theory analysis. Journal of Occupational Science, 13, 62-73. (Pubitemid 43689359)
44. King, G. A., Zwaigenbaum, L., King, S., Baxter, D., Rosenbaum, P., & Bates, A. (2006). A qualitative investigation of changes in the belief systems of families of children with autism or Down syndrome. Child: Care. Health & Development, 32, 353-369. (Pubitemid 44056555)
45. Kralik, D., Koch, T., Price, K., & Howard, N. (2004). Chronic illness self-management: Taking action to create order. Journal of Clinical Nursing, 13, 259-267. (Pubitemid 38184158)
46. Krieger, M. H. (1996). A phenomenology of motherhood. In R. Zemke & E Clark (Eds.), Occupational science: The evolving discipline (pp. 243-246). Philadelphia: E A. Davis.
47. Larson, E. (2000). Mothering: Letting go of the past ideal and valuing the real. American Journal of Occupational Therapy, 54, 249-251.
48. Lawlor, M. C. (2004). Mothering work: Negotiating health care, illness and disability, and development. In S. A. Esdaile & J. A. Olson (Eds.), Mothering occupations: Challenge, agency and participation (pp. 306-323). Philadelphia: E A. Davis.
49. Lin, C, Tsai, Y., & Chang, H. (2008). Coping mechanisms of parents of children recently diagnosed with autism in Taiwan: A qualitative study. Journal of Clinical Nursing, 17, 2733-2740. doi: 10.1111/j.l365-2702.2008.02456.x.
50. Lloyd, T., & Hastings, R. P. (2009). Parental locus of control and psychological well-being in mothers of children with intellectual disability. Journal of Intellectual ana Developmental Disability, 34, 104-115. doi: 10.1080/13668250902862074.
51. Lounds, J., Seltzer, M. M., Greenberg, J. S, & Shattuck, P. T. (2007). Transition and change in adolescents and young adults with autism: Longitudinal effects on maternal well-being. American Journal on Mental Retardation, 112, 401-417. (Pubitemid 350305114)
52. Luong, J., Yoder, M. K., & Canham, D. (2009). Southeast Asian parents raising a child with autism: A qualitative investigation of coping styles. Journal of School Nursing, 25, 222-229. doi: 10.1177/1058940509334365.
53. Matuska, K. M., & Christiansen, C. H. (2006). Lifestyle balance: A review of concepts and research. Journal of Occupational Science, 13, 49-61. (Pubitemid 43689358)
54. Matuska, K. M., & Christiansen, C. H. (2008). A proposed model of lifestyle balance. Journal of Occupational Science, 15, 9-19.
55. Matuska, K., & Christiansen, C. (2009). In K. Matuska, C. Christiansen, H. Polatajko, & J. Davis (Eds.), Life balance: Multidisciplinary theories and research (pp. 149-164). Bethesda, MD: AOTA Press.
56. Matuska, K. M., & Erickson, B. (2008). Lifestyle balance: How it is described and experienced by women with multiple sclerosis. Journal of Occupational Science, 15, 20-26.
57. Mayes, S. D., & Calhoun, S. L. (1999). Symptoms of autism in young children and correspondence with the DSM. Infants and Young Children, 12, 90-97.
58. Meitzer, L.J. (2008). Brief report: Sleep in parents of children with autism spectrum disorders. Journal of Pediatric Psychology, 33, 380-386. doi: 10.1093/jpepsy/jsn005 (Pubitemid 351499464)
59. Meitzer, L. J., & Mindell, J. A. (2007). Impact of a child's chronic illness on maternal sleep and daytime functioning. Archives of Internal Medicine, 166, 1749-1755.
60. Mernar, T. J. (2006). Occupation, stress, and biomarkers: Measuring the impact of occupational injustice. American Journal of Occupational Therapy, 13, 209-213. (Pubitemid 44842750)
61. Meyer, A. (1920). The philosophy of occupational therapy. Archives of Occupational Therapy, 1, 1-57.
62. Montes, G., & Halterman, J. S. (2007). Psychological functioning and coping among mothers of children with autism: A population-based study. Pediatrics, 119, 1040-1046. doi: 10.1542/peds.2006-2819. (Pubitemid 46715640)
63. Montes, G., & Halterman, J. S. (2008). Association of childhood autism spectrum disorders and loss of family income. Pediatrics, 121, e821-e826.
64. Mori, K., Ujiie, T., Smith, A., & Howlin, P. (2009). Parental stress associated with caring for children with Asperger's syndrome or autism. Pediatrics International, 51, 364-370. doi: 10.1111/J.1442-200X.2008.02728.X.
65. National Institute of Mental Health. (2010). Depression. Retrieved May 28, 2010 from http://www.nimh.nih.gov/health/publications/depression/index, shtml.
66. Naerde, A., Tambs, K., & Mathiesen, K. S. (2002). Child related strain and maternal mental health: A longitudinal study. Acta Psychiatrica Scandi-navica, 105, 301-309. (Pubitemid 34275848)
67. O'Brien, V (1996). Early childhood: The social domain. In R. Zemke & E Clark (Eds.), Occupational science: The evolving discipline (pp. 247-253). Philadelphia: E A. Davis.
68. Olsson, M. B., & Hwang, P. C. (2001). Depression in mothers and fathers of children with intellectual disability. Journal of Intellectual Disability Research, 45, 535-543. (Pubitemid 33107576)
69. Olsson, M. B., & Hwang, P. C. (2003). Influence of macrostructure of society on the life situation of families with a child with intellectual disability: Sweden as an example. Journal of Intellectual Disability Research, 47, 328-341. (Pubitemid 36763844)
70. Orsmond, G. I., Seltzer, M. M., Greenberg, J. S., & Kraus, M. W. (2006). Mother-child relationship quality among adolescents and adults withautism. American Journal on Mental Retardation, 111, 121-137.
71. Phelps, K. W., McCammon, S. L., Wuensch, K. L., & Golden, J. A. (2009). Enrichment, stress, and growth from parenting an individual with an autism spectrum disorder. Journal of Intellectual and Developmental Disability, 34, 133-141. doi: 10.1080/13668350903845236.
72. Polimeni, M. A., Richdale, A. L., & Francis, J. P. (2005). A survey of sleep problems in autism, Asperger's disorder and typically developing children. Journal of Intellectual Disability Research, 49, 260-268. (Pubitemid 40484966)
73. Polimeni, M., Richdale, A., & Francis, A. (2007). The impact of children's sleep problems on the family and behavioural processes related to their development and maintenance. E-Joumal of Applied Psychology, 3, 76-85.
74. Pottie, C. G., Cohen, J., & Ingram, K. M. (2009). Parenting a child with autism: Contextual factors associated with enhanced daily parental mood. Journal of Pediatric Psychology, 34, 419-429. doi: 10.1093/jpepsy/jsn094.
75. Rogers, S. L., Gordon, C. Y., Schanzenbacher, K. E., & Case-Smith, J. (2001). Common diagnosis in pediatric occupational therapy practice. In J. Case-Smith (Ed.), Occupational therapy for children (4th ed., pp. 136-187). St. Louis: Mosby.
76. Sanders, J. L., & Morgan, S. B. (1997). Family stress and adjustment as perceived by parents of children with autism or Down syndrome: Implications for intervention. Child and Family Behavior Therapy, 19, 15-32.
77. Schwitchtenberg, A., & Poehlmann, J. (2007). Applied behavior analysis: Does intervention intensity relate to family stressors and maternal well-being? Journal of Intellectual Disability Research, 51, 598-605. doi: 10.1111/j.365-2788.2006.00940.x. (Pubitemid 47034500)
78. Sen, E., & Yurtsever, S. (2007). Difficulties experienced by families with disabled children. Journal of School Nursing, 12, 238-252.
79. Smith, T. B., Matthew, N. I., Oliver, M. A., & Innocenti, M. S. (2001). Parenting stress in families of children with disabilities. American Journal of Orthopsychiatry, 71, 257-261.
80. Spiegel, K., Leproult, R., & Van Cauter, E. (1999). Impact of sleep debt on metabolic and endocrine function. The Lancet, 354, 1435-1439. (Pubitemid 29494756)
81. Thomas, K. C, Ellis, A. R., McLauren, C, Daniels, J., & Morrissey, J. P. (2007). Access to care for autism-related services. Journal of Autism and Other Developmental Disorders, 37, 1902-1912. (Pubitemid 47609348)
82. Tunali, B., & Power, T. G. (2002). Coping by redefinition: Cognitive appraisals in mothers of children with autism and children without autism. Journal of Autism and Developmental Disorders, 32, 25-34. (Pubitemid 37486143)
83. Wachtel, K., & Carter, A. S. (2008). Reaction to diagnosis and parenting styles among mothers of young children with ASDs. Autism, 12, 575-594. doi: 10.2277/1362361308094505.
84. Westhorp, R (2003). Exploring balance as a concept in occupational science. Journal of Occupational Science, 10, 99-106.
85. 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, 1075-1083. doi: 10.1177/1049732308320112.
86. Yamada, A., Suzuki, M., Kato, M., Suzuki, M., Tanaka, S., et al. & Furukawa, T. A. (2007). Emotional distress and its correlates among parents of children with pervasive developmental disorders. Psychiatry and Clinical Neurosciences, 61, 651-657. doi: lO.llll/j.1440-1819.2007.01736.x. (Pubitemid 350233493)