Families are the bedrock of long-term care, but policymakers have traditionally considered them "informal" caregivers, as they are not part of the formal paid caregiving workforce. As chronic and long-term care systems have become more complex and as more demanding tasks have been shifted to families, this view is no longer sustainable. The care transition process offers a critical opportunity to treat family caregivers as important care partners. Enhancing their involvement, training, and support will contribute to reducing unnecessary rehospitalizations and improving patient outcomes. The contributions and experiences of family caregivers should be considered in gathering information to shape policies and practice; training health care professionals; developing programs; and reforming financing.
Analysis of these 2 surveys broadens our understanding of the spectrum of family caregivers by focusing on caregivers between the ages of 18 and 25 years. The high proportion of young men raises questions about the appropriateness of current support services, which are typically used by older women. Concerted efforts are essential to ensure that young adults who become caregivers are not deterred from pursuing educational and career goals.
Policies promoting home-and community-based services and disease management models implicitly rely on family care, still the bedrock of long-term and chronic care in the United States. The United Hospital Fund studied family caregivers of stroke and brain injury patients when home care cases were opened and closed and found that even with short-term formal services, family caregivers provided three-quarters of the care. Patients' mobility impairments and Medicaid eligibility were the main factors in determining the amount and duration of formal services. Between one-third and one-half of family caregivers reported being inadequately prepared for the case closing. At all stages, family caregivers expressed significant isolation, anxiety, and depression. Therefore, home care agency practice and public policies should provide better education, support, and services for family caregivers.
Focus groups revealed five inherent conflicts that affect home health care clinicians’ interactions with family caregivers: (a) Services often depend on caregivers’ participation, but the home care system does not give them formal status or consideration; (b) clinicians must balance competing priorities within a short time frame; (c) clinicians recognize that families have unmet emotional and training needs, but benefits are not designed to address them; (d) clinicians face conflicting professional roles as patient advocates and service gatekeepers; and (e) agencies reserve social work services, a key to caregiver access to community resources, for their most difficult cases. Building a more rational system will involve raising awareness about the system’s limitation, providing more training and support for caregivers and the professionals who interact with them, and aligning financial incentives with the realities of what it takes to prepare caregivers to care for patients with complex needs when formal services end.
A series of focus groups with home health aides experienced in caring for patients with stroke or brain injury provided insight into how they experience their work and their relationship to family caregivers. Two issues merit more attention. First, aides reported that they do not always have all of the information, including diagnosis or previous history, which they need to provide appropriate care. Second, aides said they often receive little advance notice about when the case would close. Abrupt transitions are hard for aides, families, and patients who have often built up a good relationship. Agencies should establish better lines of communication for relevant information, correct misunderstandings about privacy rules, provide additional guidance about how to respond to caregivers' questions, and provide adequate time for closure.
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