New Reports Explore Your Health Care Role

DischargeThe National Center on Caregiving at Family Caregiver Alliance has released two new reports that shine a light on the important roles of family caregivers in U.S. healthcare-and how those caregivers are often unrecognized and unsupported within medical and long-term service systems.

Family Caregiving and Transitional Care: A Critical Review is an examination of the often ignored–yet absolutely essential–role of caregiving families as patients transition from one healthcare setting to another, for example discharge from hospital to home or hospital to rehab facility.

The report notes that although family caregivers are usually the individuals who will actually implement care plans following release from the hospital, they are rarely actively included in discharge planning; worse, their training, even for complex medical procedures, is often insufficient. The all-too-common result: preventable negative outcomes for patients.

The report looks at ways family caregivers characterize their experiences when a transition occurs and they are expected to take on challenging care tasks such as direct medical treatments (e.g., monitoring ventilators or home dialysis), managing medications, and coordinating essential medical services. Transition decisions made hurriedly at the point of discharge can change patient outcomes, and can be implicated in costly hospital readmissions, serious medication errors and omissions in follow-up treatment.

The authors state, “As the US continues its pressing search for ways to contain healthcare costs and improve quality, the one group whose role has been largely ignored is the nation’s 41 million family caregivers…. Family caregivers are a critical missing link in improving transitional care for frail older adults with disabilities.”

The report also examines the relatively few model transitional care programs that do support family caregivers, and concludes with recommendations on improvements needed for practice, research and public policy.

Authors: Mary Jo Gibson, MA, whose career spans 30 years of work on family caregiving, health and long-term services and supports (LTSS) policy; Kathleen Kelly, MPA, Executive Director of Family Caregiver Alliance, the National Center on Caregiving and the Bay Area Caregiver Resource Center; and Alan K. Kaplan, MSc, JD, who has more than 30 years of experience on patients’ rights, medical peer review and Medicare quality assurance issues. The report is available at: http://caregiver.org/caregiver/jsp/content/pdfs/FamCGing_TransCare_CritRvw_FINAL10.31.2012.pdf

A second report, Selected Caregiver Assessment Measures: A Resource Inventory for Practitioners, was developed for researchers and program developers to accurately assess the knowledge and well-being of family caregivers as they perform the tasks necessary to maintain the health of their ill or elderly relatives. It is the second edition and follow-up to the first Resource Inventory, published by Family Caregiver Alliance’s National Center on Caregiving in 2002.

Many family caregivers have multiple, varied and serious unmet financial, physical, emotional and social needs which require attention. As healthcare continues to move into home settings, it is important not only to assess the skills and capacity of caregivers to provide care, but also to address caregiver well-being and health in order to prevent more serious health problems for families in the long-term. Valid, reliable assessment tools are necessary to gauge families’ abilities to continue providing care.

The Resource Inventory provides a compendium of caregiver assessment measures that are practice-oriented, practical and applicable, and which address the multidimensional aspects of the caregiving experience.

“As the population ages and caregiving needs increase throughout the country, the essential role families play in the healthcare system is undeniable,” said FCA’s Kathleen Kelly. “At the same time, healthcare budgets are severely stressed and resources strained. Whether family caregivers provide transportation, food preparation, help with personal care or complex medical care such as dealing with wound care or feeding tubes, they are involved at every level. Unfortunately, caregivers’ needs are often unassessed, unrecognized, or even worse, ignored.”

The Resource Inventory was developed by Family Caregiver Alliance’s National Center on Caregiving in collaboration with the Margaret Blenkner Research Institute of the Benjamin Rose Institute on Aging. It was compiled by Sarah Schwartz, MSSA and Laura Darlak, BA, under supervision of Carol J. Whitlatch, PhD, with oversight by Kathleen Kelly, MPA. David M. Bass, PhD, was the reviewer. The report is available at: http://caregiver.org/caregiver/jsp/content/pdfs/SelCGAssmtMeas_ResInv_FINAL_12.10.12.pdf

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About Denise Brown

I began working with family caregivers in 1990 and launched CareGiving.com in 1996 to help and support them. Through my blog, I share words of comfort and offer coping strategies and tips. I also write opinion pieces about recent research, community programs and media coverage of caregiving issues. I've written several caregiving books, including "The Caregiving Years, Six Stages to a Meaningful Journey," "Take Comfort, Reflections of Hope for Caregivers" and "After Caregiving Ends, A Guide to Beginning Again." You can purchase my books and schedule a coaching call with me in our store.

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