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Predictors of subjective and objective caregiving burden in older female caregivers of adults with intellectual disabilities

Published online by Cambridge University Press:  12 August 2010

Yueh-Ching Chou ,
Li-yeh Fu ,
Li-Chan Lin  and
Yue-Chune Lee
Yueh-Ching Chou*
Affiliation:
Institute of Health and Welfare Policy, National Yang-Ming University, Taipei, Taiwan
Li-yeh Fu
Affiliation:
Institute of Health and Welfare Policy, National Yang-Ming University, Taipei, Taiwan
Li-Chan Lin
Affiliation:
Institute of Clinical and Community Health Nursing, National Yang-Ming University, Taipei, Taiwan
Yue-Chune Lee
Affiliation:
Institute of Health and Welfare Policy, National Yang-Ming University, Taipei, Taiwan
*
Correspondence should be addressed to: Professor Yueh-Ching Chou, 155, Li-Nong St., Sec.2, Peitou, Taipei, 112Taiwan. Email: [email protected].
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Abstract

Background: Informal, unpaid, and lifelong older caregivers of adults with intellectual disabilities (ID) are usually female and most often are mothers of adults with ID. However, research exploring different predictors of subjective and objective burden among these older female caregivers is sparse. The objective of this study was to examine whether the subjective and objective burden as well as positive appraisals are predicted by the same or different variables linked to the caregivers and the adults with ID.

Methods: Face-to-face interview questionnaires were administered in a city in Taiwan in 2006–2007 and 350 female family caregivers aged 55 years and older completed the interview in their homes. The independent variables included adult care demands and caregiver variables, while the dependent variables were caregivers’ subjective burden, caregivers’ objective burden and caregivers’ positive appraisals.

Results: The results demonstrated that adult care demands were associated more with the objective than the subjective caregiving burden. The strongest predictors of both subjective and objective burden were the care recipient's instrumental activities of daily living functionality, caregiver's age, and caregiver's health status. The significant predictors for positive caregiving appraisals were the caregiver's age and the caregiver's level of social support.

Conclusions: The results indicate that both the subjective and objective burdens were mostly related to the same factors, that is, to the characteristics of the older female caregivers and the recipients of care with ID. On the other hand, positive attitudes towards caregiving roles were only associated with caregiver variables.

Keywords

intellectual disabilitywomenolder caregivercaregiver burdeninformal careTaiwan
Type
Research Article
Information
International Psychogeriatrics , Volume 23 , Issue 4 , May 2011 , pp. 562 - 572
Copyright
Copyright © International Psychogeriatric Association 2010

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References

Agency for Healthcare Research and Quality (2005). U.S. Valuation of the EuroQol EQ-5D Health States. Rockville, MD: Agency for Healthcare Research and Quality. Available at: http://www.ahrq.gov/rice/EQ5Dproj.htm.Google Scholar
Aldwin, C. M. (1991). Does age affect the stress and coping process? Implications of age differences in perceived control. Journal of Gerontology: Psychological Sciences, 46, 174–180.CrossRefGoogle ScholarPubMed
Aldwin, C. M. and Brustrom, J. (1997). Theories of coping with chronic stress. In Gottlieb, B. H. (ed.), Coping with Chronic Stress (pp. 75–103). New York: Plenum Press.CrossRefGoogle Scholar
Aldwin, C. M., Sutton, K. J., Chiara, G. and Spiro, A. III. (1996). Age differences in stress, coping, and appraisal: findings from the normative aging study. Journals of Gerontology: Psychological Sciences and Social Sciences, 51, 179–189.Google Scholar
Baltes, P. (1987). Theoretical propositions of life-span development psychology: on the dynamics between growth and decline. Developmental Psychology, 23, 611–626.CrossRefGoogle Scholar
Barusch, A. S. and Spaid, W. M. (1989). Gender differences in caregiving: why do wives report greater burden? The Gerontologist, 29, 667–676.CrossRefGoogle ScholarPubMed
BiegelD., E. D., E., Milligan, S. E., Putman, P. L. and Song, L. (1994). Predictors of burden among lower socioeconomic status caregivers of persons with chronic mental illness. Community Mental Health Journal, 30, 473–494.Google Scholar
Chou, Y. C. (1985). Study of the social difficulties of the parents of mentally retarded children. Unpublished master's thesis. Graduate School of Social Work, Tunghai University, Taiwan (in Chinese).Google Scholar
Chou, Y. C. and Palley, H. A. (1998). The impact of having a child with developmental disabilities on the family in Taiwan: cultural context review. Social Development Issues, 20, 35–52.Google Scholar
Chou, Y. C. and Schalock, R. L. (2007). Trends in residential policies and services for people with intellectual disabilities in Taiwan. Journal of Intellectual Disability Research, 51, 135–141.Google Scholar
Chou, Y. C., Pu, C. Y., Lee, Y. C., Lin, L. C. and Kröger, T. (2009). Effect of perceived stigmatization on the quality of life among ageing female family carers: a comparison of carers of adults with intellectual disability and carers of adults with mental illness. Journal of Intellectual Disability Research, 53, 654–664.CrossRefGoogle ScholarPubMed
Department of Statistics, Ministry of Interior, R.O.C. (2010). National Survey of Persons with Disabilities in Taiwan. Taiwan: Department of Statistics, Ministry of Interior, R.O.C. Available at: http://www.moi.gov.tw/W3/stat/home.asp.Google Scholar
Fitting, M., Rabins, P., Lucas, M. J. and Eastham, J. (1986). Caregivers for dementia patients: a comparison of husbands and wives. The Gerontologist, 26, 248–252.CrossRefGoogle ScholarPubMed
Folkman, S., Lazzrus, R. S., Pimley, S. and Novacek, J. (1987). Age differences in stress and coping processes. Psychology and Aging, 2, 171–184.CrossRefGoogle ScholarPubMed
Fung, H. H., Carstensen, L. L. and Lang, F. R. (2001). Age-related patterns in social networks among European Americans and African Americans: implications for socioemotional selectivity across the life span. International Journal of Aging and Human Development, 52, 185–206.CrossRefGoogle ScholarPubMed
Gabrenya, W. K., Wang, Y. E. and Latane, B. (1985). Social loafing on an optimizing task: cross-cultural differences among Chinese and Americans. Journal of Cross-Cultural Psychology, 16, 223–242.CrossRefGoogle Scholar
Grad, J. and Sainbury, P. (1963). Mental illness and the family. Lancet, 1, 544–547.Google Scholar
Grant, G. (1990). Elderly parents with handicapped children: anticipating the future. Journal of Aging Studies, 4, 359–374.CrossRefGoogle Scholar
Greenberg, J. S., Seltzer, M. M. and Greenley, J. R. (1993). Ageing parents of adults with disabilities: the gratifications and frustrations of late-life caregiving. The Gerontologist, 33, 542–550.Google Scholar
Hayden, M. and Heller, T. (1997). Support, problem-solving/coping ability, and personal burden of younger and older caregivers of adults with mental retardation. Mental Retardation, 35, 364–372.2.0.CO;2>CrossRefGoogle ScholarPubMed
Heller, T. and Factor, A. (1993). Aging family caregivers: support resources and changes in burden and placement desire. American Journal on Mental Retardation, 98, 417–426.Google ScholarPubMed
Heller, T., Hsieh, K. and Rowitz, L. (1997). Maternal and paternal caregiving of persons with mental retardation across the lifespan. Family Relations, 46, 407–415.Google Scholar
Ho, D. Y. F. (1976). On the concept of face. American Journal of Sociology, 81, 867–884.CrossRefGoogle Scholar
Hong, J. and Seltzer, M. M. (1995). The psychological consequences of multiple roles: the non-normative case. Journal of Health and Social Behavior, 36, 386–398.Google Scholar
Hooyman, N. and Gonyea, J. (1995). Feminist Perspectives on Family Care: Policies for Gender Justice. New York: Sage.CrossRefGoogle Scholar
Jennings, J. (1987). Elderly parents as caregivers for their adult dependent children. Social Work, 32, 430–433.Google ScholarPubMed
Johnson, C. I. and Barer, B. M. (1993). Coping and a sense of control among the oldest old: An exploratory analysis. Journal of Aging Studies, 7, 67–80.CrossRefGoogle Scholar
Kau, S. F., LuJ. Z, Y. J. Z, Y., Yeh, S. H. and LiuH, E. H, E. (1999). The relationship between family function, social support and caregiver burden for dependent elderly. Nursing Study, 7, 172–182 (in Chinese).Google Scholar
Kim, H. W., Greenberg, J. S., Seltzer, M. M. and 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.CrossRefGoogle ScholarPubMed
Kosberg, J. I. and Cairl, R. E. (1986). The Cost of Care Index: a case management tool for screening informal care providers. Gerontologist, 26, 273–278.Google Scholar
Krauss, M. W. (1993). Child-related and parenting stress: similarities and differences between mothers and fathers of children with disabilities. American Journal on Mental Retardation, 97, 393–404.Google ScholarPubMed
Lawton, M. P. and Brody, E. (1969). Assessment of older people: self-maintaining and instrumental activities of daily living. Gerontologist, 9, 179–186.CrossRefGoogle ScholarPubMed
Lazarus, R. S. and DeLongis, D. A. (1983). Psychological stress and coping in aging. American Psychologist, 38, 245–254.Google Scholar
Maaskant, M. A., Gevers, J. P. M. and Wierda, H. (2002). Mortality and life expectancy in Dutch residential centres for individuals with intellectual disability, 1991–1995. Journal of Applied Research in Intellectual Disabilities, 15, 200–212.Google Scholar
Magliano, L., Fiorillo, A., De Rosa, C., Malangone, C., Maj, M. and the National Mental Health Project Working Group (2005). Family burden in long-term diseases: a comparative study in schizophrenia vs. physical disorders. Social Science and Medicine, 61, 313–322.CrossRefGoogle Scholar
Mahoney, F. I. and Barthel, D. W. (1965). Functional evaluation: the Barthel index. Maryland State Medicine Journal, 14, 61–65.Google ScholarPubMed
Montgomery, R. J., Gonyea, J. G. and Hooyman, N. R. (1985). Caregiving and the experience of subjective and objective burden. Family Relations, 34, 19–26.CrossRefGoogle Scholar
Patja, K., Livanainen, M., Vesala, H., Oksanen, H. and Ruoppila, I. (2000). Life expectancy of people with intellectual disability: a 35-year follow-up study. Journal of Intellectual Disability Research, 44, 591–599.CrossRefGoogle ScholarPubMed
Paykel, E. S. (1983). Methodological aspects of life events research. Journal of Psychosomatic Research, 27, 341–352.Google Scholar
Pinquart, M. and Sörensen, S. (2006). Gender differences in caregiver stressors, social resources, and health: an updated meta-analysis. Journals of Gerontology, 61B, 33–45.CrossRefGoogle Scholar
Seltzer, M. M. and Krauss, M. W. (1989). Ageing parents with adult mentally retarded children: family risk factors and sources of support. American Journal on Mental Retardation, 94, 303–312.Google Scholar
Silverman, M., Eichler, A. and Williams, G. (1987). Self-reported stress: findings from the 1985 National Health Interview Survey. Public Health Reports, 102, 47–53.Google Scholar
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.CrossRefGoogle ScholarPubMed
Song, L. Y. (2002). Development and test of the Caregiver Burden Scale: practical use perspective. Journal of Social Policy and Social Work, 6, 61–100 (in Chinese).Google Scholar
Tang, L. Y., Mao, C. L., Chou, C. F., Chen, R. C. and Liu, H. C. (1992). Caregiver burden of demented elderly and related factors: an exploratory study. Journal of Nursing, 39, 89–98 (in Chinese).Google Scholar
Vitaliano, P. P., Maiuro, R. D., Ochs, H. and Russo, J. (1989). A model of burden in caregivers of DAT patients. In Light, E. and Lebowitz, B. (eds.), Alzheimer's Disease Treatment and Family Stress: Future Directions for Research (pp. 267–291). Washington, DC: National Institutes of Mental Health.Google Scholar
Zarit, S. H., Reever, K. E. and Bach-Peterson, J. (1980). Relatives of the impaired elderly: correlates of feelings of burden. The Gerontologist, 20, 649–55.Google Scholar