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Next Step in Care: Family Caregivers & Health Care Professionals Working Together

United Hospital Fund Family Caregiving Chronology

 

1996

•    United Hospital Fund launches  the Families and Health Care Project, the first to link the needs of family caregivers with changes in the health care system; Carol Levine joins the Fund to direct the project with the goal of building public, health care professional, and policy support for family caregivers (October).

1998

•    “Rough Crossings: Family Caregivers’ Odysseys through the Health Care System,” written by Carol Levine and published by the United Hospital Fund, is the first report to identify transitions as a critical point at which the health care system fails to include family caregivers.
•    A front-page New York Times story, “Health Care Comes Home, A Special Report: Families Provide Medical Care, Tubes and All,” by Ian Fisher (June 7), features Fund work on family caregiving.
•    The Fund takes the issue of family caregivers to a national level when Fund President James Tallon, Jr., calls attention to it at a “Family Reunion” hosted by Vice President Al Gore and attended by President and Mrs. Clinton on June 22.

1999

•    “The Economic Value of Informal Caregiving,” by Peter Arno, Carol Levine, and Margaret Memmott, is published in Health Affairs (18 (2): 182-88) and provides the first estimate of how much unpaid caregivers contribute to the health care system–the midrange estimate was $196 billion (reflecting 1997 data); the 2006 estimate by AARP is $358 billion.
•     “The Loneliness of the Long-Term Caregiver,” by Carol Levine, is published in the New England Journal of Medicine (May 29, 340(20): 1587-90), a personal narrative about transitions and the systemic failures to address the needs of family caregivers; “The Trouble with Families: Toward an Ethics of Accommodation,” by Carol Levine and Connie Zuckerman, is published in Annals of Internal Medicine (130:148-152), providing an exploration of the tensions between health care professionals and families.
•    Always On Call: When Illness Turns Families into Caregivers, edited by Carol Levine, is published by United Hospital Fund; the second edition is published by Vanderbilt University Press in 2004.
•    Carol Levine is interviewed by Terry Gross on the NPR program “Fresh Air” about Always On Call.

2000

•     “A Survey of Family Caregivers in New York City: Findings and Implications for the Health Care System,” by Carol Levine, Alexis Kuerbis, David A. Gould, Maryam Navaie-Waliser, Penny Hollander Feldman, and Karen Donelan, is published and serves as a  companion to a national survey of family caregivers conducted by the Harvard School of Public Health, Visiting Nurse Service of New York, and United Hospital Fund; it is the first survey to ask caregivers about performing medical tasks and the training received. Results from the survey are subsequently reported in "Challenged To Care: Informal Caregivers in a Changing Health System," a national survey published by Health Affairs (volume 21, number 4) in 2002.

 2002

•    The United Hospital Fund hosts a conference,  “Building Successful Family Caregiver Programs,”  which includes sessions on reaching the family caregiver audience (May 2).

2003

•    The United Hospital Fund Family Caregiver Grant Initiative, a three-year, $2 million effort to develop family caregiver support programs in seven New York City hospitals, is completed; results are published in  “Making Room for Family Caregivers: Seven Innovative Hospital Programs,” by Carol Levine.

2004

•    The United Hospital Fund hosts a conference, “Family Caregiving in a Changing World” (March).
•    The book Family Caregivers on the Job: Moving Beyond ADLs and IADLs, edited by Carol Levine, is published by United Hospital Fund; its content is based on working group discussions of measures that look only at custodial care for determining what family caregivers do.
•    The book The Cultures of Caregiving: Conflict and Common Ground among Families, Health Professionals, and Policy Makers, edited by Carol Levine and Thomas H. Murray, is puiblished by Johns Hopkins University Press; based on a collaborative project between the Fund and the Hastings Center, the book provides recommendations for collaboration around transitions.
•    The United Hospital Fund, in collaboration with the National Alliance on Caregiving and with support from MetLife, publishes a series of  brochures on hospital discharge for family caregivers and discharge planners..

2005

•    The United Hospital Fund and National Alliance on Caregiving release a study “Young Caregivers in the U.S.: Findings from a National Survey,” co-authored by Gail Gibson Hunt, Carol Levine, and Linda Naiditch; the study is the first survey of young caregivers aged 8 to 18 in the United States.
•    A companion article, “Young Adult Caregivers: A First Look at an Unstudied Population,” by Carol Levine, et al., is published in the American Journal of Public Health; it reports survey results for caregivers aged 18 to 24.

2006

•    “This Case is Closed: Family Caregivers and the Termination of Home Health Care Services for Stroke Patients,” by Carol Levine, Steven M. Albert, Alene Hokenstad, Deborah E. Halper, Andrea Y. Hart, and David A. Gould, is published in Milbank Quarterly (84(2):305-331), providing the first study of caregiver experiences of transitions from home care services; based on a research study of 99 family caregivers of stroke and brain injury patients following discharge from hospital or short-term nursing home stay, this report finds that even while home care services were in place, families provided 70 percent of the care.
•    In her keynote speech at the launch of the New York City Family Caregiver Coalition, Carol Levine formally presents two documents—a policy agenda and an ethical framework—intended to guide future health reform discussions on behalf of New York State's family caregivers; project results in the State’s creation of the Family Caregiver Council in 2007.

2007

•    United Hospital Fund staff conduct plans for Next Step in Care: Family Caregivers and Health Care Professionals Working Together, the first effort in transition care to specifically involve family caregivers.

 2008

•    Terry Gross interviews Carol Levine on the NPR program “Fresh Air,” after the publication in the New York Times Magazine of Carol’s essay titled “Two Husbands.”
•     The Next Step in Care Campaign is launched; materials for family caregivers and health care providers are created and tested, promotional materials are produced, and the campaign and its goals are presented at numerous meetings and conferences.

 2009

•     The Next Step in Care website is launched, making the guides and checklists for family caregivers widely available, initially in English and Spanish. Guides for health care providers are also included. Among the early media responses to the website, the Wall Street Journal calls it "a detailed guide to ... issues" (1-13-09), and The New York Times finds it "extraordinarily useful" (1-15-09) and "one of the best" of its kind (5-13-09).

 2010

•     The guides for family caregivers are translated and made available in Chinese and Russian, as well as English and Spanish.
•     The list of available guides continues to grow, addressing new topics such as becoming a family caregiver, understanding hospice and palliative care, and (for providers) reducing stress among patients with dementia.
•     A new initiative—Transitions in Care–Quality Improvement Collaborative, or TC-QuIC—is launched.  Multidisciplinary teams from hospitals, nursing homes, rehabilitation centers, home care agencies, and a hospice begin to work together and to work more effectively with family caregivers to create smoother and safer transitions between health care settings.

 2011

•     The first round of TC-QuIC wraps up, with teams reporting significant progress using qualitative and quantitative measures. Plans proceed towards the launch of a second round, with many first round participants returning and other new ones joining.

2012

•     The secound round of TC-QuIC concludes, with teams reporting better understanding of their family caregivers. A report on the initiative's findings is planned.

•     The United Hospital Fund and AARP Public Policy Instuitute publish Home Alone: Family Caregivers Providing Complex Chronic Care, a report based on a groundbreaking national survey of family caregivers. Among the report's findings, nearly half of family caregivers are performing medical and nursing tasks, including medication management, wound care, and the operation of specialized medical equipment and monitors.

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