Family caregivers in palliative care

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Who are family caregivers?

As discussed subsequently, family caregiving roles vary across populations and illness characteristics. The variability in the definition of caregiving has contributed to divergent estimates of family caregiving in research on later life families. Broadly, studies of older adults with chronic physical and cognitive impairments document that there is a well-defined caregiving hierarchy. The primary caregiver is most often the spouse (70% of the time), followed by an adult child (20%) and friends

Costs of caregiving

The magnitude of care given to patients by family members is staggering in size and cost: It is estimated that there are 27.6 million family caregivers who provide care to patients and that the economic value of the care they provide may be $196 billion [19]. According to figures from the United States Administration on Aging, if the work of these caregivers were replaced by paid home care, it would cost $45 billion to $94 billion a year [20]. The amount of care varies by illness. In the

Stress-process model: conceptualizing other costs of caregiving

As described subsequently, many other nonfinancial costs associated with caregiving are incurred by family members. The stress process model is a theoretical framework that has been applied most widely in the study of later life to understand the variability reported in caregiver well-being [27] and more recently has been proposed as a useful model for understanding caregiving in the context of palliative and end-of-life care [28], [29]. The stress process model developed by Pearlin et al [30]

Stressors of caregiving

As illustrated in Fig. 1, primary stressors traditionally are conceptualized as the caregiving roles and tasks performed to address the needs of the care recipient. Multiple sources of data show that caregiver roles and tasks are diverse, calling for individualized assessment of stressors among caregivers and their response to stressors, given that the same task may be stressful to one caregiver but not to another [31], [32]. Statewide and national surveys by the Kaiser Foundation, the Robert

Resources

In the stress-process model, social, internal, and spiritual resources available to family caregivers moderate the relationship between stressors and outcomes and explain the tremendous variability in the outcomes experienced by caregivers [30]. Ways of coping, social support, spiritual support, and faith practices have been identified as important resources to caregivers who are addressing the needs of older adults in palliative and end-of-life care [45], [46].

Outcomes: impact of caregiving

After several decades of research, it has been clearly established that caregiving exerts a toll on the psychological and physical well-being of family caregivers. The emotional experiences of caregivers are complex, unpredictable, and often isolating [47]. According to Tobin [48], sometimes “[w]orking with these families challenges us to determine who is the client … especially when the emotional pain associated with caregiving … is too much to bear.” Increasing numbers of books in the lay

Interventions for caregivers

On a fundamental level, the provision of information is a primary intervention for caregivers, who often feel ill prepared for the caregiving role. Giving information and explanations is likely the most common intervention health care professionals provide. Rather than make assumptions, health care professionals need to listen to caregivers to determine what kinds of information would be most beneficial to them. Caregivers may need information related to (1) the illness and the needs of the

Caregiver bereavement

This article began with the recognition that a dominant paradigm of the patient-physician relationship may neglect the family; likewise, a dominant understanding in many medical settings is that when a patient dies, the physician's responsibility ends. Although social work, chaplaincy, and other fields traditionally have been clear in understanding that this may not be the case, mainstream medicine increasingly is coming to this realization [87], [88].

The period of bereavement is a vulnerable

Summary

The recognition of family caregivers as vital participants in care and recipients of care is a growing part of geriatric and palliative medicine. The burdens assumed by family caregivers are myriad in scope and have a significant impact on health and mortality. From a clinical perspective, understanding and designating advance directives is an important first step for clinicians, but it is only a first step. Sophisticated clinicians also need to (1) recognize the stressors and rewards that

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