Families and Health Care Chronology 1996-2019

For an interview with Carol Levine, founding director of UHF's Families and Health Care Project, click here.



UHF launches its Families and Health Care Project to link the needs of family caregivers with changes in the health care system; Carol Levine joins UHF to direct the project.


Rough Crossings: Family Caregivers’ Odysseys through the Health Care System, written by Carol Levine, is the first report to identify transitions as a critical point where the health care system fails to include family caregivers and forms the basis of much of UHF’s continuing work in care transitions.

UHF President James Tallon, Jr. calls attention to family caregiving as a national issue at a “Family Reunion” hosted by Vice President Al Gore and attended by President and Mrs. Clinton. The Administration proposes the National Family Caregiver Support Program, established in 2000.


The Economic Value of Informal Caregiving, by Peter Arno, Carol Levine, and Margaret Memmott, published in Health Affairs, provides the first estimate of how much unpaid caregivers contribute to the health care system–the midrange estimate is $196 billion.

The Loneliness of the Long-Term Caregiver, by Carol Levine, a personal narrative about transitions and the systemic failures to address the needs of family caregivers, is published in the New England Journal of Medicine.

The Trouble with Families: Toward an Ethics of Accommodation, by Carol Levine and Connie Zuckerman, published in Annals of Internal Medicine, provides an exploration of the tensions between health care professionals and families.

Always On Call: When Illness Turns Families into Caregivers,edited by Carol Levine, published by UHF; the second edition is published by Vanderbilt University Press in 2004


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 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 UHF—the first survey to ask caregivers about performing medical tasks and the training received. Results from the survey are subsequently published by Health Affairs  as Challenged To Care: Informal Caregivers in a Changing Health System, in 2002.


UHF hosts a conference, Building Successful Family Caregiver Programs.


UHF’s Family Caregiver Grant Initiative, a three-year, $2 million effort to develop family caregiver support programs in seven New York City hospitals, is completed and results are published as Making Room for Family Caregivers: Seven Innovative Hospital Programs.


UHF hosts a conference, “Family Caregiving in a Changing World.”

Family Caregivers on the Job: Moving Beyond ADLs and IADLs, edited by UHF’s Carol Levine, is published by UHF, based on working group discussions of measures that looked only at custodial care for determining what family caregivers do.

The Cultures of Caregiving: Conflict and Common Ground among Families, Health Professionals, and Policy Makers, edited by Carol Levine and Thomas H. Murray, published by Johns Hopkins University Press.


UHF and the National Alliance on Caregiving’s study Young Caregivers in the U.S.: Findings from a National Survey, is the first (and still the only) 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 UHF’s Carol Levine, et al., is published in the American Journal of Public Health; it reports on a survey of caregivers aged 18 to 24.


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, published in Milbank Quarterly, provides the first study of caregiver experiences of transitions from home care services.

UHF issues a policy agenda and an ethical framework, based on the guidance of an expert advisory group, to guide future health reform discussions on behalf of New York State's family caregivers; the project results in the State’s creation of the Family Caregiver Council in 2007.


UHF develops Next Step in Care: Family Caregivers and Health Care Professionals Working Together, the first website to specifically aid family caregivers in transitions in care.


UHF’s Next Step in Care website is launched, offering guides and checklists for family caregivers and health care providers to help navigate care transitions.


The Next Step in Care guides for family caregivers are translated into Chinese and Russian, adding to the English and Spanish versions already available, and new topics are added.

A new initiative—Transitions in Care–Quality Improvement Collaborative, or TC-QuIC—is launched, helping multidisciplinary teams from hospitals, nursing homes, rehabilitation centers, home care agencies, and a hospice work more effectively with family caregivers to create smoother and safer transitions between health care settings.


Home Alone: Family Caregivers Providing Complex Chronic Care, published by UHF and AARP Public Policy Institute and based on a groundbreaking national survey of family caregivers, finds that nearly half of family caregivers perform complex medical tasks, and 60 percent do not have training for these responsibilities.


Employed Family Caregivers Providing Complex Chronic Care, the first of a series of reports from UHF and AARP Public Policy Institute, is based on a December 2011 national survey of 1,677 family caregivers and shows that employed family caregivers perform many of the same tasks as health care professionals. The second and third publications in the series are published in 2014.

Carol Levine’s commentary for UHF, The New CMS Two-Midnight Rule on Hospital Stays, is among the first to focus on the impact on family caregivers of a new federal “Two Midnight”  rule, which will only cover hospital admissions if the patient is likely to stay through two midnights.

Engaging Family Caregivers as Partners in Transitions highlights a three-year initiative—Transitions in Care-Quality Improvement Collaborative, or TC-QuIC—involving 45 health care provider teams engaging and supporting family caregivers.


UHF collaborates with Boston Medical Center/Boston University School of Medicine on a new tool for hospitals, Understanding and Enhancing the Role of Family Caregivers in the Re-Engineered Discharge.

Nineteen New York hospitals and 28 nursing homes begin working together to improve patient transitions from hospital to nursing home and nursing home to emergency department through a new quality improvement initiative—IMPACT (IMprove Processes and Care Transitions) to Reduce Readmissions Collaborative—jointly launched by UHF and Greater New York Hospital Association.


UHF joins  Project ACHIEVE, a multi-year project funded by the federal Patient-Centered Outcomes Research Institute (PCORI), focused on assessing the impact of transitional care programs on patients and family caregivers.


It All Falls on Me,  issued by UHF and AARP Public Policy Institute, reports on family caregivers who feel unprepared for the complex medical and nursing tasks they are expected to perform at home. The report serves as a framework for a series of videos and resource guides produced by AARP/Home Alone Alliance to provide instruction to family caregivers.


I Can Take Care of Myself!: Patients' Refusals of Home Health Care Services, issued by UHF in conjunction with the Alliance for Home Health Quality and Innovation, compiles research findings and recommendations developed at a roundtable attended by home health, family caregiving, and hospital experts.

UHF issues two guides for patients and family caregivers on the New York State Caregiver Advise, Record, and Engage (CARE) Act and a toolkit for hospital staff to help them prepare family caregivers for the transition from hospital to home.


UHF helps design the new AARP/Home Alone Alliance survey, first fielded in 2012, with oversampling of multicultural groups and millennials.

A 2-day meeting, funded by the Alfred E. Sloan Foundation in collaboration with the Milbank Memorial Fund, is held at UHF in October to examine the “ripple effect”—the impact of the opioid epidemic on children and families.


AARP and the Home Alone Alliance (UHF is a Founding Partner) release Home Alone Revisited: Family Caregivers Providing Complex Care, following up the2012 Home Alone report. Among the main findings: half of family caregivers are providing medical/nursing tasks and are especially stressed by the need to manage pain medications.

UHF releases  The Ripple Effect: The Impact of the Opioid Epidemic on Children and Families, a path-breaking report on the rarely discussed impact on children when a family member is a substance abuser.

The Illusion of Choice: Why Decisions about Post-Acute Care are Difficult for Patients and Family Caregivers,is one of four reports in UHF’s “Difficult Decisions” series about the difficulties patients and their families face when choosing post-acute care.

Project ACHIEVE, a study of patients’ and caregivers’ perspectives on transitions in care funded by the Patient-Centered Outcomes Research Institute, ends in June. Carol Levine is a member of the research team and co-chair of the Stakeholder Advisory Group.

July 25, 2019
Family Caregiving