Mediators of well-being in ageing family carers of adults with intellectual disabilities

Journal of Applied Research in Intellectual Disabilities

Volumn 20, Issue 6, 2007, Pages 539-552

  Minnes, Patricia ^a   Woodford, Lynn ^a   Passey, Jennifer ^a  

^a QUEEN S UNIVERSITY   (Canada)

Author keywords

Ageing carers; Depression; Intellectual disability; Mediators; Quality of life; Well being

Indexed keywords

EID: 35348932660     PISSN: 13602322     EISSN: 14683148     Source Type: Journal    
DOI: 10.1111/j.1468-3148.2007.00364.x     Document Type: Article

References (86)

1. Baine D., McDonald L., Wilgosh L. Mellon S. (1993) Stress experienced by families of older adolescents or young adults with severe disability. Australia and New Zealand Journal of Developmental Disabilities 18, 177 188.
2. Barnett V. Lewis T. (1984) Outliers in Statistical Data, 2nd edn. John Wiley & Sons, Chichester, UK.
3. Baron R. M. Kenny D. A. (1986) Moderator-mediator variable distinction in social psychological research: conceptual, strategic and statistical considerations. Journal of Personality and Social Psychology 51, 1173 1182.
4. Baxter C. (1987) Professional services as support: perceptions of parents. Australia and New Zealand Journal of Developmental Disabilities 13, 243 253.
5. Baxter C., Cummins R. A. Yiolitis L. (2000) Parental stress attributed to family members with and without disability: a longitudinal study. Journal of Intellectual and Developmental Disability 25, 105 118.
6. Beckman P. J. (1991) Comparison of mothers' and fathers' perceptions of the effect of young children with and without disabilities. American Journal of Mental Retardation 95, 585 595.
7. Benn M. K. (2005) Parental psychological health following onset of their child's acquired brain injury: a model analysis. Unpublished Doctoral Dissertation, Queen's University, Kingston, ON.
8. Blacher J. (1984) Sequential stages of parental adjustment to the birth of a child with handicaps. Mental Retardation 22, 55 68.
9. Blacher J., Shapiro J., Lopez S., Diaz L. Fusco J. (1997) Depression in Latina mothers of children with mental retardation: a neglected concern. American Journal of Mental Retardation 101, 483 496.
10. Brannan A. Heflinger C. A. (2001) Distinguishing caregiver strain from psychological distress: modelling the relationships among child, family and caregiver variables. Journal of Child and Family Studies 10, 405 418.
11. Bristol M. M. (1987) Mothers of children with autism or communication disorders: successful adaptation and double ABCX model. Journal of Autism and Developmental Disabilities 17, 469 486.
12. Bristol M. M., Gallagher J. J. Schopler E. (1988) A developmental perspective on stress and coping families of autistic children. In : Severely Handicapped Young Children and their Families: Research in Review (ed. J. Blacher pp. 3 50. Academic Press, New York.
13. Brown I. Brown R. I. (2003) Quality of Life and Disability: An Approach for Community Practitioners. Jessica Kingsley Publishers, London.
14. Center for the Study of Aging and Human Development (1978) Multidimensional Functional Assessment. The OARS Methodology: A Manual, 2nd edn. Duke University, Durham, NC.
15. Chen S. C., Ryan-Henry S., Heller T. Chen E. H. (2001) Health status of mothers of adults with intellectual disability. Journal of Intellectual Disability Research 45, 439 449.
16. Clark M. S. (1999) The double ABCX model of family crisis as a representation of family functioning after rehabilitation from stroke. Psychology, Health & Medicine 4, 203 220.
17. Cole D. A. (1986) Out-of-home child placement and family adaptation. A theoretical framework. American Journal of Mental Deficiency 91, 226 236.
18. Cole D. A. Turner J. E. (1993) Models of cognitive mediation and moderation in childhood depression. Journal of Abnormal Psychology 102, 271 281.
19. Dunst C. J., Trivette C. M. Cross A. H. (1986) Mediating influences of social support: personal, family, and child outcomes. American Journal of Mental Deficiency 90, 403 417.
20. Endler N. S. (1997) Stress, anxiety and coping: the multidimensional interaction model. Canadian Psychology 38, 136 153.
21. Epel E. S., Blackburn E. H., Lin J., Dhabgar F. S., Adler N. E., Morrow J. D. Cawthon R. M. (2004) Accelerated telomere shortening in response to life stress. Proceedings of the National Academy of Sciences of the United States of America 101, 17312 17315.
22. Essex E. L., Seltzer M. M. Krauss M. W. (1999) Differences in coping effectiveness and well-being among aging mothers and fathers of adults with mental retardation. American Journal of Mental Retardation 104, 545 563.
23. Flaherty E. M. Glidden L. M. (2000) Positive adjustment in parents rearing children with Down syndrome. Early Education and Development 11, 407 422.
24. Folkman S. Moskowitz J. T. (2000) Positive affect and the other side of coping. The American Psychologist 55, 647 654.
25. Folkman S., Lazarus R., Pimley S. Novacek J. (1987) Age differences in stress and coping processes. Psychology and Aging 2, 171 184.
26. Freedman R. I., Griffiths D., Krauss M. W. Seltzer M. M. (1999) Patterns of respite use by aging mothers of adults with mental retardation. Mental Retardation 37, 93 103.
27. Gats M., Bengtson V. L. Blum M. J. (1990) Caregiving Families. Handbook of the Psychology of Aging, 3rd edn, pp. 404 426. Academic Press, San Diego, CA.
28. Gill T. M. Feinstein A. R. (1994) A critical appraisal of the quality of quality-of-life measurements. Journal of the American Medical Association 272, 619 626.
29. Glidden L. M. Schoolcraft S. A. (2003) Depression: its trajectory and correlates in mothers rearing children with intellectual disabilities. Journal of Intellectual Disability Research, Special Issue on Family Research 47, 250 263.
30. Grant G. Ramcharan P. (2001) Views and experiences of people with intellectual disabilities and their families: the family perspective. Journal of Applied Research in Intellectual Disabilities 14, 364 380.
31. Gray D. E. (2002) Ten years on: a longitudinal study of families of children with autism. Journal of Intellectual and Developmental Disability 27, 215 222.
32. Greenberg J. S., Seltzer M. M. Greenley J. R. (1993) Aging parents of adults with disabilities: the gratifications and frustrations of later-life caregiving. The Gerontologist 33, 542 550.
33. Hastings R. P. Taunt H. M. (2002) Positive perceptions in families of children with developmental disabilities. American Journal of Mental Retardation 107, 116 127.
34. Hayden M. F. Heller T. (1997) Support, problem-solving/coping ability, and personal burden of younger and older caregivers of adults with mental retardation. Mental Retardation 35, 364 372.
35. Hays R. D., Wells K. G., Sherbourne C., Rogers W. Spritzer K. (1995) Functioning and well-being outcomes of patients with depression compared with chronic general medical illnesses. Archives of General Psychiatry 52, 11 19.
36. Heller T. Factor A. (1993) Aging family caregivers: support resources and changes in burden and placement desire. American Journal of Mental Retardation 98, 417 426.
37. Heller T. Factor A. (1994) Facilitating future planning and transitions out of the home. In : Life Course Perspectives on Adulthood and Old Age (eds M. M. Seltzer, M. W. Krauss M. P. Janicki 39 50. American Association on Mental Retardation, Washington, DC.
38. Heller T., Miller A. B. Factor A. (1997) Adults with mental retardation as supports to their parents: effects on parental caregiving appraisal. Mental Retardation 35, 338 346.
39. Herman S. E. Marcenko M. O. (1997) Perceptions of services and resources as mediators of depression among parents of children with developmental disabilities. Mental Retardation 35, 458 467.
40. Idler E. L. Benyamini Y. (1997) Self-rated health and mortality: a review of twenty-seven community studies. Journal of Health and Social Behavior 38, 21 37.
41. Kim H. W., Greenberg J. S., Seltzer M. M. Krauss M. W. (2003) The role of coping in maintaining the psychological well-being of mothers of adults with intellectual disability and mental illness. Journal of Intellectual Disability Research 47, 313 327
42. King G., King S. Rosenbaum P. (1999) Family-centred caregiving and well-being of parents of children with disabilities: linking process with outcome. Journal of Pediatric Psychology 24, 41 53.
43. Konstantareas M. Homatidis S. (1991) The developmentally disordered child and the effect of severe dysfunction on parents. Psychiatric Clinics of North America 14, 15 29.
44. Krauss M. W. (1993) Child-related and parenting stress. Similarities and differences between mothers and fathers of children with disabilities. American Journal of Mental Retardation 97, 393 404.
45. Krauss M. W. Seltzer M. M. (1998) Life course perspectives in mental retardation research: The case of family caregiving. In : Handbook of Mental Retardation and Development (eds J. Burack, R. Hodapp E. Zigler pp. 504 520. Cambridge University Press, Cambridge.
46. Lavee Y., McCubbin H. I. Patterson J. M. (1985) The Double ABCX model of family stress and adaptation: an empirical test by analysis of structural equations with latent variables. Journal of Marriage and the Family 47 (4 811 823.
47. Lawton M. P., Moss M., Kleban M. H., Glicksman A. Rovine M. (1991) A two factor model of caregiving appraisal and psychological well being. Journal of Gerontology: Psychological Sciences 46, 181 189.
48. Lazarus R. S. (1999) Stress and Emotion: A New Synthesis. Springer Publishing Co., New York.
49. Lazarus R. S. Folkman S. (1984) Stress, Appraisal and Coping. Springer Publishing Company, New York.
50. Lustig D. C. Akey T. (1999) Adaptation in families with adult children with mental retardation: impact of family strengths and appraisal. Education and Training in Mental Retardation 34, 260 270.
51. MacKinnon D. P., Lockwood C. M., Hoffman J. M., West S. G. Sheets V. (2002) A comparison of methods to test mediation and other intervening variable effect. Psychological Methods 7, 83 104.
52. McColl M. A. Skinner H. (1995) Assessing inter-and intrapersonal resources: social support and coping among adults with disability. Disability and Rehabilitation 17, 24 34.
53. McCubbin H. I. Patterson J. M. (1983) The family stress process: the Double ABCX model of adjustment and adaptation. In : Social Stress and the Family: Advances and Developments in Family Stress Theory and Research (eds H. McCubbin, M. Sussman J. Patterson 7 39. Haworth Press, New York.
54. Minnes P. M. (1988) Family stress associated with a developmentally handicapped child. International Review of Research in Mental Retardation 15, 195 223.
55. Minnes P. M. (1998) Mental retardation: the impact upon the family. In : Handbook of Mental Retardation and Development (eds J. Burack, R. Hodapp E. Zigler pp. 693 712. Cambridge University Press, Cambridge.
56. Minnes P. M. Woodford L. M. (2004) Well-being in aging parents caring for an adult with a developmental disability. Journal on Developmental Disabilities 11, 47 66.
57. Minnes P. M., Nachshen J. Woodford L. M. (2003) The changing role of families. In : Developmental Disabilities in Ontario, 2nd edn (eds I. Brown M. Percy pp. 663 676. Ontario Association on Developmental Disabilities, Toronto.
58. Murrell S. A., Himmelfarb S. Wright K. (1983) Prevalence of depression and its correlates in older adults. American Journal of Epidemiology 117, 173 185.
59. Nachshen J. S. Minnes P. M. (2005) Empowerment in parents of school-aged children with and without developmental disabilities. Journal of Intellectual Disability Research 49, 889 904
60. Nachshen J. S., Woodford L. M. Minnes P. M. (2002) The family stress and coping interview for families of individuals with developmental disabilities: a lifespan perspective on family adjustment. Journal of Intellectual Disability Research 47, 285 290.
61. Nachshen J. S., Garcin N. Minnes P. (2005) Problem behaviour in children with intellectual disabilities: parenting stress, empowerment, and school services. Mental Health Aspects of Developmental Disabilities 8, 105 114.
62. Olsson H. B. Hwang C. P. (2001) Depression in mothers and fathers rearing children with intellectual disabilities. Journal of Intellectual Disability Research 45, 535 545.
63. Orr R. R., Cameron S. J. Day D. (1991) Coping with stress in families with children who have mental retardation: an evaluation of the Double ABCX model. American Journal of Mental Retardation 95, 444 450.
64. Ouellette-Kuntz H., Garcin N., Lewis S., Minnes P., Freeman C. Holden J. (2005) Addressing health disparities through promoting equity for individuals with intellectual disability. Canadian Journal of Public Health 96, 8 22.
65. Poston D., Turnbull A., Park J., Mannan H., Marquis J. Wang M 2003) Family quality of life: a qualitative inquiry. Mental Retardation 41, 313 328.
66. Preacher K. J. Leonardelli G. J. (2003). Calculation for the Sobel test: an interactive calculation tool for mediation tests. http://www.psych.ku.edu/ preacher/sobel/sobel.htm.
67. Pruchno R. A. Resch N. C. (1989) Husbands and wives as caregivers: antecedents of depression and burden. The Gerontologist 29, 159 165.
68. Pruchno R. A., Patrick J. H. Burant C. J. (1996) Mental health of aging women with children who are chronically disabled: examination of a two factor model. Journal of Gerontology 51B, S284 S296.
69. Quittner A. L., Glueckauf R. L. Jackson D. N. (1990) Chronic parenting stress: moderating versus mediating effects of social support. Journal of Personality and Social Psychology 59, 1266 1278.
70. Radloff L. S. (1977) The CES-D scale: a self-report depression scale for research in the general population. Applied Psychological Measurement 5, 383 401.
71. Roberto K. A. (1995) Family caregivers of aging adults with disabilities: a review of the caregiving literature. In : The Elderly Caregiver: Caring for Adults with Developmental Disabilities (ed. K. A. Roberto pp. 3 18. Sage Publications, Newbury Park, CA.
72. Saloviita T., Italinna M. Leinonen E. (2003) Explaining the parental stress of fathers and mothers caring for a child with intellectual disability: a Double ABCX model. Journal of Intellectual Disability Research 47, 300 312.
73. Schalock R. L. Verdugo M. A. (2002) Handbook on Quality of Life for Human Service Practitioners. American Association on Mental Retardation, Washington, DC.
74. Seltzer M. M. (1992) Depression in Aging Mothers of Adults with Mental Retardation. Paper presented at the 25th Annual Gatlinburg Conference on Research and Theory in Mental Retardation and Developmental Disabilities, March 1992, Gatlinburg, TN.
75. Seltzer M. M., Greenberg J. S., Floyd F. J., Pettee Y. Hong J. (2001) Life course impacts of parenting a child with a disability. American Journal of Mental Retardation 106, 265 286.
76. Shin J. Y. Crittenden K. S. (2003) Well-being of mothers of children with mental retardation: an evaluation of the Double ABCX model in a cross-cultural context. Asian Journal of Social Psychology 6, 171 184.
77. Singer G. H. S. (2006) Meta-analysis of comparative studies of depression in mothers of children with and without developmental disabilities. American Journal of Mental Retardation 111, 115 228.
78. Sloper P. Turner S. (1992) Service needs of families of children with severe physical disability. Child: Care, Health and Development 18, 259 282.
79. Smith G. C. (1996) Caregiving outcomes for older mothers of adults with mental retardation: a test of the two factor model of psychological well-being. Psychology and Aging 11, 353 361.
80. Smith G. C., Tobin S. S. Fullmer E. M. (1995) Elderly mothers caring at home for offspring with mental retardation: a model for permanency planning. American Journal of Mental Retardation 99, 487 499.
81. Sparrow S. S., Balla D. A. Cicchetti D. V. (1984) Vineland Adaptive Behaviour Scales: Interview Edition Expanded Form Manual. American Guidance Services, Circle Pines, MN.
82. Thorin E. J. Irvin L. K. (1992) Family stress associated with transition to adulthood of young people with severe disabilities. Journal of the Association for Persons with Severe Handicaps 17, 31 39.
83. Wade D. T. (1992) Measurement in Neurological Rehabilitation. Oxford University Press, New York.
84. Westling D. L. (1996) What do parents of children with moderate and severe disabilities want? Education and Training in Mental Retardation and Developmental Disabilities 31, 86 114.
85. White N. Hastings R. P. (2004) Social and professional support for parents of adolescents with severe intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 17, 181 190.
86. Woodford L. (1998) Well-being in parents of adults with developmental disabilities. Unpublished M.A. Thesis, Department of Psychology, Queen's University, Kingston, ON.