Family caregivers in palliative care
Section snippets
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
References (96)
- et al.
The prevalence of informal caregiving to persons with AIDS in the United States: caregiver characteristics and their implications
Soc Sci Med
(1994) - et al.
Stress and coping in caregiving partners of men with AIDS
Psychiatr Clin North Am
(1994) - et al.
Needs of family caregivers of persons with cancer: a review
Semin Oncol Nurs
(1993) - et al.
Health and social consequences for caregivers of demented and non-demented elderly
J Clin Epidemiol
(1992) - et al.
Written information given to patients and families by palliative care units: a national survey
Lancet
(2000) - et al.
A problem-solving intervention for caregivers of cancer patients
Soc Sci Med
(1995) Grief and bereavement
Prim Care Clin Office Pract
(2001)- et al.
Families in later life: connections and transitions
(2001) Defining family caregivers of the elderly: implications for research and public policy
Gerontologist
(1991)Clinical practice guidelines for quality palliative care
The trouble with families: toward an ethic of accommodation
Annals of Internal Medicine
Supporting family caregivers at the end of life: “they don't know what they don't know”
JAMA
Clinical practice guidelines for quality palliative care
Men as caregivers: an overview
Approaching death: improving care at the end-of-life
National estimates of the quantity and cost of informal caregiving for the elderly with dementia
J Gen Intern Med
The family
Challenged to care: informal caregivers in a changing health system
Health Aff
Interventions for women as family caregivers
Annu Rev Nurs Res
Informal caregiving to persons with AIDS in the United States: caregiver burden among central cities residents eighteen to forty-nine years old
Am J Community Psychol
Husbands caring for wives with dementia: a longitudinal study of continuity and change
Health Soc Work
Psychological challenges associated with caregiving among men
Service utilization and support provision of caregiving men
The economic value of informal caregiving
Health Aff
America's families care: a report on the needs of America's family caregivers
Informal caregiving for diabetes and diabetic complications among elderly Americans
J Gerontol B Psychol Sci Soc Sci
The policy challenge of Alzheimer's disease
Generations
Extent and cost of informal caregiving for older Americans with symptoms of depression
Am J Psychiatry
Always on call: when illness turns families into caregivers
The impact of serious illness of patients' families. SUPPORT Investigators
JAMA
Understanding economic and other burdens of terminal illness: the experience of patients and their caregivers
Ann Intern Med
Coping: a review of theoretical frameworks and the measures used among caregivers of individuals with dementia
J Gerontol Soc Work
A review of the measurement of caregiver and family burden in palliative care
J Palliat Care
Caregiving and the stress process: an overview of concepts and their measures
Gerontologist
Care of the dying
What terminally ill patients care about: toward a validated construct of patients' perspectives
J Palliat Med
Family Circle/Kaiser Family Foundation National Survey on Health Care and Elder Care Issues
Cancer care: Impact of interventions on caregiver outcomes
Annu Rev Nurs Res
Eldercare and work-role conflict: toward an understanding of gender differences in caregiver burden
Gerontologist
Proxy decision making for incompetent patients: an ethical and empirical analysis
JAMA
Constructing Alzheimer's: narratives of lost identities, confusion and loneliness in old age
Culture Med Psychiatry
Profiles in caregiving
Caregiving as a life course transition among older husbands: a prospective study
Gerontologist
Relinquishing in-home dementia care: difficulties and perceived helpfulness during the nursing home transition
Am J Alzheimers Dis
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