|
|
|
|
|
|
||
|
|
||||
|
|
||||
|
||||
Based on two years of fieldwork, conducted between March 2003 and March 2005 in the health care industry of the northeastern United States, this study shows that the work of family caregivers of elders goes far beyond previously recognized care in the home to acknowledge care inside health care facilities and in conjunction with community services. It reveals that family caregivers — untrained, undersupported, and unseen — constitute a "shadow workforce," acting as geriatric case managers, medical record keepers, paramedics, and patient advocates to fill dangerous gaps in a system that is uncoordinated, fragmented, bureaucratic, and often depersonalized. Detailed examination of what family caregivers actually do in traversing multiple domains reveals the extent of their contribution to and the weaknesses in the present geriatric health care system. It suggests that the experiences of family caregivers must be central to the creation of new policies and a more coordinated system that uses the complex work of family caregivers by providing the training and support that they need.
Arber, S., and J. Ginn. 1992. Class and Caring: A Forgotten Dimension. Sociology 26: 619-634.[Abstract]
Arno, P., C. Levine, and M. Memott. 1999. The Economic Value of Informal Caregiving. Health Affairs 18 (2): 182-188.[Abstract]
Berg-Weger, M., D. M. Rubio, and S. S. Tebb. 2000. Living with and Caring for Older Family Members: Issues Related to Caregiver Well-Being. Journal of Gerontological Social Work 33 (2): 47-62.[CrossRef][Web of Science]
Bittman, M., J. Fast, K. Fisher, and C. Thomson. 2004. Making the Invisible Visible: The Life and Time(s) of Informal Caregivers. In Family Time: The Social Organization of Care, ed. Nancy Folbre and Michael Bittman, 69-89. London: Routledge.
Coberly, S., and G. G. Hunt. 1995. The Metlife Study of Employer Costs for Working Caregivers. Washington, DC: Washington Business Group on Health.
Donaldson, S. 1995. Worksite Health Promotion: A Theory-Driven, Empirically Based Perspective. In Job Stress Interventions, ed. L. Murphy, J. Hurrell, S. Sauter, and G. Keita, 73-90. Washington, DC: American Psychological Association.
Doty, P., M. Jackson, and W. Crown. 1998. The Impact of Female Caregivers' Employment Status on Patterns of Formal and Informal Eldercare. Gerontologist 38: 331-341.[Abstract]
Feinberg, L. 2004. Caregiving on the Public Policy Agenda. In Always on Call: When Illness Turns Families into Caregivers, ed. C. Levine, 193-207. Nashville: Vanderbilt University Press.
Feinberg, L., and S. Newman. 2004. A Study of Ten States since Passage of the National Family Caregiver Support Program: Policies, Perceptions, and Program Development. Gerontologist 44: 760-769.
Folbre, N. 2001. The Invisible Heart: Economics and Family Values. New York: New Press.
Folbre, N., and M. Bittman, eds. 2004. Family Time: The Social Organization of Care. London: Routledge.
Garey, A., K. Hansen, R. Hertz, and C. Macdonald, eds. 2002. Care and Kinship: An Introduction. Journal of Family Issues 23: 703-715.
Ginn, J., and S. Arber. 1996. Patterns of Employment, Gender, and Pensions: The Effect of Work History on Older Women's Non-State Pensions. Work, Employment, and Society 10: 469-490.[Abstract]
Gitlin, L. N., K. Reever, M. P. Dennis, E. Mathieu, and W. W. Hauck. 2006. Enhancing Quality of Life of Families Who Use Adult Day Services: Short- and Long-Term Effects of the Adult Day Services Plus Program. Gerontologist 46: 630-639.
Glazer, N. 1993. Women's Paid and Unpaid Labor: The Work Transfer in Health Care and Retailing. Philadelphia: Temple University Press.
Googins, B. 1991. Work/Family Conflicts: Private Lives — Public Responses. New York: Auburn House.
Gould, D. 2004. Family Caregivers and the Health Care System: Findings from a National Survey. In The Cultures of Caregiving: Conflict and Common Ground among Families, Health Care Professionals, and Policy Makers, ed. C. Levine and T. H. Murray, 15-34. Baltimore: Johns Hopkins University Press.
Harrington, M. 1999. Care and Equality: Inventing a New Family Politics. New York: Knopf.
Harvard Medical School. 2004. Caregiver's Handbook: A Guide to Caring for the Ill, Elderly, and Disabled. Boston: Harvard Health Publications.
Hooyman, N., and J. Gonyea. 1995. Feminist Perspectives on Family Care: Policies for Gender Justice. Thousand Oaks, CA: Sage.
Ironmonger, D. 1996. Counting Outputs, Capital Inputs, and Caring Labor: Estimating Gross Household Product. Feminist Economics 2 (3): 37-64.[CrossRef]
Kane, R. L., and J. West. 2005. It Shouldn't Be This Way: The Failure of Long-Term Care. Nashville, TN: Vanderbilt University Press.
Korn-Meyer, S., L. Toberg, and J. Boal. 2004. The Visiting Doctors Program: Bringing Care Home. In Always on Call: When Illness Turns Families into Caregivers, ed. C. Levine, 208-220. Nashville, TN: Vanderbilt University Press.
Lechner, V. M. 1993. Support Systems and Stress Reduction among Workers Caring for Dependent Parents. Social Work 38: 461-469.[Web of Science][Medline]
Lee, J., M. Walker, and R. Shoup. 2001. Balancing Elder Care Responsibilities and Work: The Impact on Emotional Health. Journal of Business and Psychology 16: 277-289.[CrossRef][Web of Science]
Levine, C. 1998. Rough Crossings: Family Caregivers' Odysseys through the Health Care System. New York: United Hospital Fund.
———, ed. 2004. Always on Call: When Illness Turns Families into Caregivers. Nashville, TN: Vanderbilt University Press.
Levine, C., and T. H. Murray, eds. 2004. The Cultures of Caregiving: Conflict and Common Ground among Families, Health Care Professionals, and Policy Makers. Baltimore: Johns Hopkins University Press.
Margolies, L. 2004. My Mother's Hip: Lessons from the World of Eldercare. Philadelphia: Temple University Press.
Martire, L., and M. Stephens. 2003. Juggling Parent Care and Employment Responsibilities: The Dilemmas of Adult Daughter Caregivers in the Workforce. Sex Roles 48: 167-173.[CrossRef][Web of Science]
Medjuck, S., J. Keefe, and P. Fancey. 1998. Available but Not Accessible: An Examination of the Use of Workplace Policies for Caregivers of Elderly Kin. Journal of Family Issues 19: 274-299.[Abstract]
Merrill, D. 1997. Caring for Elderly Parents: Juggling Work, Family, and Caregiving in Middle and Working Class Families. Westport, CT: Auburn House.
Moen, P., J. Robison, and V. Fields. 1994. Women's Work and Caregiving Roles: A Life Course Approach. Journals of Gerontology B 49: S176-S186.
Navaie-Waliser, M., P. Feldman, D. Gould, C. Levine, A. Kuerbis, and K. Donelan. 2002. When the Caregiver Needs Care: The Plight of Vulnerable Caregivers. American Journal of Public Health 92: 409-413.
National Alliance for Caregiving and AARP. 2004. Caregiving in the U.S. April. www.caregiving.org/data/04finalreport.pdf.
Neal, M., N. Chapman, B. Ingersoll-Dayton, and A. Emlen. 1993. Balancing Work and Caregiving for Children, Adults, and Elders. Newbury Park, CA: Sage.
Netten, A., and J. Beecham, eds. 1993. Costing Community Care: Theory and Practice. Aldershot, UK: Ashgate Publishing.
Nichols, J. N. 2004. Windows to the Heart: A Family-Centered Hospital Unit for Dementia Patients. In Always on Call: When Illness Turns Families into Caregivers, ed. C. Levine, 221-234. Nashville, TN: Vanderbilt University Press.
Rabow, M., J. Hauser, and J. Adams. 2004. Supporting Family Caregivers at the End of Life. Journal of the American Medical Association 291: 483-491.
Sager, A., and D. Socolar. 2005. Health Care Costs Absorb One-Quarter of Economic Growth, 2000–2005. Boston University School of Public Health Data Brief No. 8, February. Boston: Boston University School of Public Health.
Scharlach, A., B. Lowe, and E. Schneider. 1991. Elder Care and the Work Force: Blueprint for Action. Lexington, MA: Lexington Books.
Sherriff, R. L. 2007. Balancing Work and Family. Sacramento: California Senate Office of Research.
Silverstein, M., and T. M. Parrott. 2001. Attitudes toward Government Policies That Assist Informal Caregivers: The Link between Personal Troubles and Public Issues. Research on Aging 23: 349-374.
Smith, T., and R. Toseland. 2006. The Effectiveness of a Telephone Support Program for Caregivers of Frail Older Adults. Gerontologist 46: 620-629.
Starrels, M., B. Ingersoll-Dayton, D. Dowler, and M. Neal. 1997. The Stress of Caring for a Parent: Effects of the Elder's Impairment on an Employed, Adult Child. Journal of Marriage and the Family 59: 860-872.[CrossRef][Web of Science]
Stone, D. 2000. Caring by the Book. In Care Work: Gender, Labor, and the Welfare State, ed. Madonna Harrington Meyer, 89-111. New York: Routledge.
———. 2003. Caring Communities: What Would It Take? In Long-Term Care and Medicare Policy: Can We Improve Continuity of Care? ed. D. Blumenthal, M. Moon, M. Warshawsky, and C. Boccuti, 214-224. Washington, DC: National Academy of Social Insurance.
Teri, L., S. McCurry, R. Logsdon, and L. Gibbons. 2005. Training Community Consultants to Help Family Members Improve Dementia Care: A Randomized Controlled Trial. Gerontologist 45: 802-811.
Tornatore, J., and L. Grant. 2004. Family Caregiver Satisfaction with the Nursing Home after Placement of a Relative with Dementia. Journals of Gerontology B 59: S80-S88.
Tronto, J. 1993. Moral Boundaries: A Political Argument for an Ethic of Care. London: Routledge.
Ungerson, C. 1995. Gender, Cash, and Informal Care: European Perspectives and Dilemmas. Journal of Social Policy 24: 31-52.[Web of Science]
U.S. Census Bureau. 2004. U.S. Interim Projections by Age, Sex, Race, and Hispanic Origin. March 18. www.census.gov/ipc/www/usinterimproj/.
Wagner, D., and G. Hunt. 1994. The Use of Workplace Eldercare Programs by Employed Caregivers. Research on Aging 16: 69-84.[Abstract]
Walker, A., C. Pratt, and L. Eddy. 1995. Informal Caregiving to Aging Family Members: A Critical Review. Family Relations 44: 402-411.[CrossRef][Web of Science]
Wiles, J. 2003. Informal Caregivers' Experiences of Formal Support. Health and Social Care in the Community 11: 189-207.[CrossRef]
Wolf, D. 2004. Valuing Informal Elder Care. In Family Time: The Social Organization of Care, ed. Nancy Folbre and Michael Bittman, 110-129. London: Routledge.
Zarit, S., M. Stephens, A. Townsend, and R. Greene. 1998. Journals of Gerontology B 53: S267-S277.
CiteULike 
Connotea 
Del.icio.us 
Digg 
Reddit 
Technorati What's this?
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
|
|
