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.
Objective To identify best practices to support and grow the frontline nursing home workforce based on the lived experience of certified nursing assistants (CNAs) and administrators during COVID‐19. Study setting Primary data collection with CNAs and administrators in six New York metro area nursing homes during fall 2020. Study design Semi‐structured interviews and focus groups exploring staffing challenges during COVID‐19, strategies used to address them, and recommendations moving forward. Data collection We conducted interviews with 6 administrators and held 10 focus groups with day and evening shift CNAs ( n = 56) at 6 nursing homes. Data were recorded and transcribed verbatim and analyzed through directed content analysis using a combined inductive and deductive approach to compare perceptions across sites and roles. Principal findings CNAs and administrators identified chronic staffing shortages that affected resident care and staff burnout as a primary concern moving forward. CNAs who felt most supported and confident in their continued ability to manage their work and the pandemic described leadership efforts to support workers' emotional health and work–life balance, teamwork across staff and management, and accessible and responsive leadership. However, not all CNAs felt these strategies were in place. Conclusions Based on priorities identified by CNAs and administrators, we recommend several organizational/industry and policy‐level practices to support retention for this workforce. Practices to stabilize the workforce should include 1) teamwork and person‐centered operational practices including transparent communication; 2) increasing permanent staff to avoid shortages; and 3) evaluating and building on successful COVID‐related innovations (self‐managed teams and flexible benefits). Policy and regulatory changes to promote these efforts are necessary to developing industry‐wide structural practices that target CNA recruitment and retention.
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