Abstract
In almost every way, cancer care in the United States today reflects brilliant advances in research, education, and training. Patients receive sophisticated treatments that have become so routine family members can provide them at home. When they want to be involved in treatment decisions, these same patients and families can turn to the Internet and learn about clinical trials and recommendations from the best medical facilities throughout the world. As patients receive chemotherapy and other treatments at home, medical professionals are turning over care to families and other nonprofessional caregivers. However, while cancer diagnosis and treatment explode with promise for the future, policies that support families providing care lag far behind.
This is a preview of subscription content, log in via an institution to check access.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
References
Administration on Aging, Department of Health & Human Services. (2012a). National Family Caregiver Support Program (OAA Title IIIE). Retrieved February 29, 2012 from http://www.aoa.gov/AoA_programs/HCLTC/Caregiver/index.aspx.
Administration on Aging, Department of Health & Human Services. (2012b). Lifespan respite care program. Retrieved on February 29, 2012 from http://www.aoa.gov/AoAroot/AoA_Programs/HCLTC/LRCP/index.aspx.
American Cancer Society. (2012a). Help laws to defeat cancer. Retrieved on February 26, 2012 from http://www.cancer.org/Involved/Advocate/index.
American Cancer Society. (2012b). Tops for becoming an effective cancer advocate. Retrieved on March 3, 2012 from http://www.cancer.org/Involved/Advocate/TipsforCancerAdvocate/index.
American Cancer Society (ACS). (2012c). Caregivers. Retrieved on March 16, 2012 from http://www.cancer.org/Treatment/Caregivers/index.
Bell, L., & Newman, S. (2003). Paid family and medical leave: Why we need it, how we can get it. San Francisco: Family Caregiver Alliance. Retrieved from http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1012.
Centers for Medicaid and Medicare Services. (2006). Caregiver partnerships and caregiver workgroup. Retrieved from http://www.cms.hhs.gov/Partnerships/12_Caregiver.asp.
Doty, P. (2004). Consumer-directed home care: Effects on family caregivers. Retrieved from http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1193.
Edwards, B., Howe, H. L., Ries, L. A., Thum, M. J., Rosenberg, H. M., Yancik, R., et al. (2002). Annual report of the nation on the status of cancer. Cancer, 94(10), 2766–2792.
Emanuel, E. J., Fairclough, D. L., Slutsman, J., Alpert, H., Baldwin, D., & Emanuel, L. L. (1999). Assistance from family members, friends, paid caregivers, and volunteers in the care of terminally ill patients. New England Journal of Medicine, 341, 956–963.
Emory Winship Cancer Institute. (2012). Peer partners program. Retrieved on March 16, 2012 from http://winshipcancer.emory.edu/survivorship/WinshipContentPage.aspx?nd=910.
Family Caregiver Alliance (FCA). (2006). Caregiver assessment: Principles, guidelines and strategies for change (Report from a National Consensus Development Conference; Vol. 1). San Francisco: Family Caregiver Alliance.
Feinberg, L. F., & Newman, S. L. (2005). State policy in practice: Consumer direction and family caregiving: Results from a national survey. Retrieved from http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1499.
Feinberg, L. F., Newman, S. L., & Van Steenberg, C. (2002). Family caregiver support: Policies, perceptions and practices in 10 states since passage of the National Family Caregiver Support Program. San Francisco: National Center on Caregiving, Family Caregiver Alliance. Retrieved from http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=451.
Feinberg, L. F., Newman, S. L., Gray, L., & Kolb, K. (2004). The state of the states in family caregiver support: A 50-State study. Retrieved from http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1276.
Feinberg, L. F., Newman, S., & Fox-Grage, W. (2005). Family caregiver support services: Sustaining unpaid family and friends in a time of public fiscal constraint. Retrieved from http://www.aarp.org/research/housing-mobility/caregiving/fs112_hcbs.html.
Feinberg, L., Wolkwitz, K, & Goldstein, C. (2006). Ahead of the curve: Emerging trends and practices in family caregiver support. Retrieved from http://www.aarp.org/research/longtermcare/resources/inb120_caregiver.html.
Foundation for Accountability & The Robert Wood Johnson Foundation. (2001). A portrait of informal caregivers in America. Retrieved from http://www.rwjf.org/files/publications/other/CaregiverChartbook2001.pdf.
Fox-Grage, W., Coleman, B., & Blancato, R. (2001). Federal and state policy in family caregiving: Recent victories but uncertain future. San Francisco: National Center on Caregiving, Family Caregiver Alliance. Retrieved from http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=839.
Gibson, M. J., & Houser, A. (2007, June). Valuing the invaluable: A new look at the economic value of family caregiving. Retrieved on March 18, 2012 from the AARP Public Policy Institute at http://assets.aarp.org/rgcenter/il/ib82_caregiving.pdf.
Giorgianni, S. J. (1997). The Pfizer journal: A profile of caregiving in America. New York: Impact Communications, Inc.
Given, B., & Given, C. (2002). Home health care takes toll on caregivers, patients. Press Release on Research Grant Award. Michigan State University, East Lansing, MI.
Given, B. A., Given, C. W., & Kozachic, S. (2001). Family support in advanced cancer. CA Cancer Journal for Clinicians, 51, 213–231.
Grady, P. A., & Armstrong, N. (2001). Executive summary: The National Institute of Nursing Research session on research in informal caregiving. Bethesda: National Institutes of Health. Retrieved from http://www.ninr.nih.gov/NR/rdonlyres/5B7C2DB8-9C63-4F26-A26B-13D1F947FFCB/4868/WorkingGrouponInformalCaregiving.pdf.
Hoffman, M. K. (2002). Self-awareness in family caregiving: A report on the communications environment. Retrieved from http://www.nfcacares.org/pdfs/CommEnvironmentFINAL.pdf.
Hunt, G., & Levine, C. (2002). A family caregiver’s guide to hospital discharge planning. Retrieved from http://www.uhfnyc.org/usr_doc/DischargePlan_Fam.pdf.
Joint Commission on Accreditation of Healthcare Agencies (JCAHO). (2010). National patient safety goals. Retrieved on March 4, 2012 from http://www.jcrinc.com/Joint-Commission-Requirements/Homecare/#NPSG.
Joint Commission on Accreditation of Healthcare Agencies (JCAHO). (2012). Home care resources. Retrieved on March 4, 2012 from http://www.jcrinc.com/HC-Resources.
Kunkel, S. R., Applebaum, R. A., & Nelson, I. N. (2003–2004, Winter). For love and money: Paying family caregivers. Generations, 27, 74–80.
Levine, C., Kuerbis, A., Gould, D., Navaie-Waliser, M., & Feldman P. (2000). Family caregivers in New York City: Survey findings and implications for the changing health care system. New York: United Hospital Fund and Visiting Nurse Service of New York.
Li, L. W. (2005). Longitudinal changes in the amount of informal care among publicly paid home care recipients. Gerontologist, 45(4), 465–473.
Link, G., Dize, V., Folkemer, D., & Curran, C. (2006). Family caregiver support: State facts at a glance. Washington: National Conference of State Legislatures. Retrieved from http://www.ncsl.org/programs/health/forum/caregiversupport.htm.
Met Life Mature Market Institute and National Alliance for Caregiving (NAC). (2007). Resources for caregiving. Retrieved on March 4, 2012 from http://www.caregiving.org/pdf/resources/resourcesforcaregivers07.pdf.
National Alliance for Caregiving (NAC). (2001). Toward a national caregiving agenda: Empowering family caregivers in America. Proceedings from a conference convened by the National Alliance for Caregiving, in collaboration with the Partnership for Caring. Retrieved from http://www.caregiving.org/data/summit.pdf.
National Alliance for Caregiving (NAC). (2004). Summary of caregiving legislation in 109th congress. Retrieved on March 4, 2012 from http://www.familycaregiving101.org/news/list.cfm.
National Center on Caregiving (NCC). (2006). NCC services. Retrieved from http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=368.
National Cancer Institute (NCI), National Institutes of Health. (2012). Coping with cancer: For caregivers, family, and friends. Retrieved on March 4, 2012 from http://cancer.gov/cancertopics/coping/familyfriends.
National Coalition for Cancer Survivorship. (2005). Cancer survivor toolbox: Caring for the caregiver. Retrieved from http://www.cancersurvivaltoolbox.org/.
National Committee for Quality Assurance (NCQA). (2011a). Accreditation. Retrieved on March 10, 2012 from http://www.ncqa.org/tabid/66/Default.aspx.
National Committee for Quality Assurance (NCQA). (2011b). New online NCQA reports show how well health plans treat key illnesses. Retrieved on March 10, 2012 from http://www.ncqa.org/tabid/275/Default.aspx.
National Family Caregivers Association (NFCA). (2012). Yes, I am a family caregiver. Retrieved on March 16, 2012 from http://www.thefamilycaregiver.org/caregiving_resources/v4_a3.cfm.
National Health Council & National Quality Caregiving Coalition (NHC and NQCC). (2002). Family caregiving: Sharing strategies, celebrating progress (Conference Report). Washington: National Health Council. Retrieved from http://www.nationalhealthcouncil.org/pubs/CaregivingReport123.pdf.
National Health Council and WebMD Health Network (NHC & WebMD). (2012). A different normal. Retrieved on March 16, 2012 from http://exchanges.webmd.com/chronic-disease-and-disability-exchange.
National Partnership for Women and Families. (2006). Where families matter: State progress toward valuing America’s families. Washington: National Partnership for Women and Families. Retrieved from http://paidsickdays.nationalpartnership.org/site/DocServer/WhereFamiliesMatter2005Report.pdf?docID=1056.
New Freedom Initiative Caregiver Support Workgroup. (2006). Compendium of HHS caregiver support activities. Washington: U.S. Department of Health and Human Services.
Pavalko, E., & Henderson, K. (2006). Combining care work and paid work: Do workplace policies make a difference? Research on Aging, 28(3), 359–374.
Polivka, L. (2001). Paying family members to provide care: Policy considerations for states (Policy Brief No. 7). San Francisco: National Center on Caregiving, Family Caregiver Alliance. Retrieved from http://www.caregiver.org/caregiver/jsp/content/pdfs/op_2001_10_policybrief_7.pdf.
Reinhard, S. C., Kassner, E., Houser, A., & Mollica, R. (2011, September). Raising expectations: A state scorecard on long-term services and supports for older adults, people with physical disabilities, and family caregivers. Retrieved on March 10, 2012 from the AARP website at http://www.aarp.org/relationships/caregiving/info-09-2011/ltss-scorecard.html.
Shelby, R. A, Taylor, K. L., Kerner, J. F., Coleman, E., & Blum, D. (2002). The role of community-based and philanthropic organizations in meeting cancer patient and caregiver needs. Cancer Journal for Clinicians, 52, 229–246.
Toseland, R. W. (2004). Caregiver education and support programs: Best practice models. San Francisco: Family Caregiver Alliance. Retrieved from http://www.caregiver.org/caregiver/jsp/content/pdfs/Education_Monograph_01-20-05.pdf.
United Hospital Fund (UNF). (2012). Family caregiving. Retrieved on March 18, 2012 from http://www.uhfnyc.org/initiatives/family-caregiving.
Wagner, D. (2001). Enhancing state initiatives for working caregivers (Policy Brief No. 5). San Francisco: National Center on Caregiving, Family Caregiver Alliance. Retrieved from http://www.caregiver.org/caregiver/jsp/content/pdfs/op_2001_10_policybrief_5.pdf.
Young, L., & Newman, S. (2003). Caregiving and retirement planning: What happens to family caregivers who leave the work force (Policy Brief). Retrieved from http://www.caregiver.org/caregiver/jsp/content/pdfs/op_2003_retirement_planning.pdf.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2012 Springer Science+Business Media, LLC
About this chapter
Cite this chapter
Kaufman, D.L., O’Mara, A., Schrauf, C.M. (2012). Cancer Caregiving: Policy and Advocacy. In: Talley, R., McCorkle, R., Baile, W. (eds) Cancer Caregiving in the United States. Caregiving: Research • Practice • Policy. Springer, New York, NY. https://doi.org/10.1007/978-1-4614-3154-1_14
Download citation
DOI: https://doi.org/10.1007/978-1-4614-3154-1_14
Published:
Publisher Name: Springer, New York, NY
Print ISBN: 978-1-4614-3153-4
Online ISBN: 978-1-4614-3154-1
eBook Packages: Behavioral ScienceBehavioral Science and Psychology (R0)