Family Caregiviing and Transitional Care: A Critical Review

Family Caregiving and Transitional Care:A Critical ReviewMary Jo Gibson, Kathleen Kelly, Alan KaplanOctober 2012Presentation of Findings:2013 Annual Meeting American Society on AgingWhy We Did This StudyTransitions across health care settings, such as hospital to home, are fraught with risks for older adults and adults with disabilities

Family caregivers usually implement the care plans after release from the hospital but rarely are actively engaged in discharge planning

Transitions from hospital to home are receiving policy attention especially with current focus on reducing readmissions soon after hospitalization

How We Did This StudyConducted a methodical review of the literature from 2000 to 2012 on family (or informal) caregivers and care transistions, transitional care, discharge planning on PubMed, MEDLINE, the Cochrane Database of Systematic Reveiws & the Journals of the GSA

Internet searches of publications by governmental, provider, health policy and consumer organizations to ensure currencyHow We Did the Study, part 2Focused on seven transitional care programs identified as evidence-based transition interventions by CMS and ACL

Five Hospital to Home care transitions programs:Care Transitions Intervention (Coleman)Transitional Care Model (Naylor)BRIDGEProject REDProject BOOSTTwo physician practice-based coordination programs:Guided CareGRACE

What We Found:Family Caregivers Receive Inadequate SupportRelatively sparse evidence on how caregivers perceive their own roles and needs

What is available indicates they do not receive adequate recognition or support during the discharge process from health care professionals

Even when a caregiver was present, hospital staff frequently directed teaching exclusively toward the patient. For example, a nurse and patient sat side-by-side to review instructions; the highly motivated caregiver, seated across the room due to lack of space, was unable to see the written material. The integral role of caregivers in helping patients at home contrasted with their often peripheral role in in-hospital transition processes. Carol H. Cain, 2012What We Found:Family Caregiver Involvement Can Improve Patient Outcomes and Continuity of CareThe evidence base on how family caregiver involvement affects the quality of health care is expanding.

Their involvement has improved outcomes for persons with physical, mental and cognitive disorders, contributes to greater patient satisfaction, and improved continuity of care.

Evidence suggests that family caregivers should not be expected to provide complex medical care in the home, especially without training on in-home support from professionalsWhat We Found:Health Professionals are Increasingly Recognizing the Need to Work with Family CaregiversLittle research has been conducted on health care professionals perceptions of family caregivers roles and needs or on their communication with them.However, leading physician, nursing, social work organizations have affirmed family caregivers contributions and the need to work in partnership with themWhat We Found:Transitional Care Programs Vary in Key FeaturesHospital to home programs all share some common characteristics:Interaction with a designated staff person prior to and following discharge (phone, in-person)Enhanced discharged planningMedication reconciliationCoordination with the PCP so that follow up visit is arrangedImproved provider to provider communicationPatient and caregiver educationReferrals to community resourcesTable 4

What We Found:A Greater Focus on LTSS is NeededOnly a few of these programs place substantial emphasis on coordinating care with LTSS after release from the hospital

This part of the care continuum is essential for most of the high risk older adults on which the programs focus, and it is the part in which families play starring rolesWhat We Have Learned:Transitional Care Programs Vary in How Actively They Engage Family CaregiversWhile 4 of the 7 transitional care programs reviewed offer specfic steps to actively engage family caregivers as partners, in the other three programs they are viewed more passivelyIn the latter, mention of family caregivers focuses on how they can help patients adhere to discharge instructions or medication regimens, not on how their expertise can be tapped to improve transitional care or how their needs as individuals should be assessed and addressed as part of effective discharge planningOutcomes for family caregivers, such as reduction in stress, have been reported for only two of the programs

Table 6

What We Have Learned:New Teaching Guides and Programs Are Available but Often Not AccessibleGood methods of and tools for engaging family caregivers in transitional care exist but are not yet being used widely

A growing body of teaching programs, guides and checklists is becoming available to assist both patients and family caregivers during transitions

It is a challenge to make these materials easily usuable and available when needed, especially at the point of care new digital technologies hold promise in this areaAppendix (page 49)

What We Have Learned:Barriers to Greater Engagement with Family Caregivers Should be RecognizedFinancial pressures on hospitals to reduce length of stay mean patients are more complex at the point of dischargeInsufficient attention to arranging and integrating LTSS in health care deliveryPatient education materials written at a level that most patients and caregivers cannot understandReluctance of patients and families to ask questions for fear of being labeled difficultLack of awareness of discharge-related rights during transitions (such as safe discharge)RecommendationsAdopt a patient and family-centered framework for transitional careFocus more attention on the needs of patients and family caregivers of diverse cultures, ethnicities and races.Fund the development of quality measures focused on family caregivers in transitional care.Enroll family caregivers in studies on transitional care that include measures of their needs and the outcomes they experience.Conduct more research on attitudes of healthcare professionals toward family caregivers and barriers they encounter while trying to improve transitional care processes and engage family caregivers.Recommendations6. Require primary care practices to demonstrate active engagement of patients and families in transitional care and quality improvement activities in order to qualify as a medical home.Include information about family caregivers in the electronic medical record that transfers across settings.Seeking meaningful responses by hospitals to the Medicare Conditions of Participation.Change payment to support the engagement of patients and families.Expand family caregiver engagement in new programs in the Affordable Care Act.

End NoteAlmost all of are or will be family caregivers who provide medical care and long-term services and supports, including implementing hospital discharge care plans.

Family caregivers are a critical part of the solution.Contact Information:

National Center on Caregiving785 Market Street Ste 750San Francisco CA 94104415.434.3388

Authors:Mary Jo Gibson mjgibson100@gmail.comKathleen Kelly kkelly@caregiver.orgAlan Kaplan akkaplan@verizon.net

A copy of the full report can be found on the FCA website:http://www.caregiver.org/caregiver/jsp/content/pdfs/FamCGing_TransCare_CritRvw_FINAL10.31.2012.pdf