Many of the 23 million individuals with heart failure (HF) worldwide receive daily, unpaid support from a family member or friend. Although HF and palliative care practice guidelines stipulate that support be provided to family caregivers, the evidence-base to guide care for this population has not been comprehensively assessed. In order to appraise the state-of-the-science of HF family caregiving and recommend areas for future research, the aims of this review were to summarize: 1) how caregivers influence patients, 2) the consequences of HF for caregivers, and 3) interventions directed at HF caregivers. We reviewed all literature to December 2015 in PubMed and CINAHL using the search terms “heart failure” AND “caregiver.” Inclusion criteria dictated that studies report original research of HF family caregiving. Articles focused on children or instrument development or aggregated HF with other illnesses were excluded. We identified 120 studies, representing 5,700 caregivers. Research on this population indicates that: 1) caregiving situations vary widely with equally wide-ranging tasks for patients to help facilitate their health behaviors, psychological health and relationships, and quality of life (QoL); 2) caregivers have numerous unmet needs that fluctuate with patients’ unpredictable medical status, are felt to be ignored by the formal healthcare system, and can lead to distress, burden, and reduced QoL; and 3) relatively few interventions have been developed and tested that effectively support HF family caregivers. We provide recommendations to move the science forward in each of these areas that moves beyond descriptive work to intervention development and clinical trials testing.
Background
Those most at risk from severe COVID-19 infection are older adults; therefore, long-term care (LTC) facilities closed their doors to visitors and family caregivers (FCGs) during the initial wave of the COVID-19 pandemic. The most common chronic health condition among LTC residents is dementia, and persons living with dementia (PLWD) rely on FCGs to maintain their care provision. This study aims to evaluate the impact of visitor restrictions and resulting loss of FCGs providing in-person care to PLWD in LTC during the first wave of the COVID-19 pandemic.
Method
An online survey and follow-up focus groups were conducted June to September 2020 (n=70). Mixed quantitative (descriptive statistics) and qualitative (thematic analysis) methods were used to evaluate study data.
Results
FCGs were unable to provide in-person care and while alternative communication methods were offered, they were not always effective. FCGs experienced negative outcomes including social isolation (66%), strain (63%), and reduced quality of life (57%). PLWD showed an increase in responsive behaviours (51%) and dementia progression. Consequently, 85% of FCGs indicated they are willing to undergo specialized training to maintain access to their PLWD.
Conclusion
FCGs need continuous access to PLWD they care for in LTC.
The current study suggests that workplace training has an important role in helping reduce direct care worker injuries, thereby decreasing organizational expenses related to injury, such as workers' compensation, sick time, and turnover. The NIOSH Organization of Work and Occupational Safety and Health framework offers a mechanism by which occupational health and safety interventions may be derived to reduce incidents of injury.
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