One of the themes for this issue is supporting family members of acute and critically ill patients. In addition to more traditional meanings of family as the primary social unit of biological or adopted relatives, we are referring here to any type of close kinship or social ties that may exist between the patient and others. Davidson1 considers various strategies that nurses may employ to optimize the family’s adaptation to a loved one’s critical condition. Sacco et al2 describe how the institution of ongoing support groups facilitated by family members can create a more family-inclusive environment in a burn-trauma intensive care unit. Plost and Nelson3 report on the steps they implemented to achieve family-centered care via creation of a new full-time nursing position of family care specialist. In addition to improving family and patient satisfaction with care received in an intensive care, critical care, or progressive care unit, programs that augment family support complement direct patient care and may relieve some of the burden experienced by nursing staff who are attempting to meet pressing patient and family needs simultaneously.
As mutually satisfying as partnering with the family during the acute phase of care may be, however, what about patients whose recuperation, rehabilitation, recovery, or remaining life necessitates a program of care no longer assigned to us, but one that will be assumed by a family caregiver? As Sacco et al2 point out, family concerns regarding what to expect during the transition of care from hospital to home and coping with care requirements after the patient is discharged home are prominent concerns voiced by family members while the patient is still hospitalized. Can critical care nurses extend the care they render to include greater support for the family caregivers of discharged critical care patients? Before identifying some resources available to assist family caregivers, we need to acknowledge that every patient’s clinical case, family support system, and family attributes are unique and influence the nature and scope of his or her needs for care in the home setting. However, critical care nurses may improve their ability to lend support to family caregivers by first becoming better acquainted with who these caregivers are, who the recipients of care are, the types of care family members provide, the challenges they confront, and the needs they identify as most important.
Three aspects of family caregivers are worth noting: a definition of who constitutes a family caregiver, the number of family members who serve in this capacity, and a profile of these care providers.
According to the Family Caregiver Alliance, the term caregiver refers to “anyone who provides assistance to someone else who is, in some degree, incapacitated and needs help.”4,(p1) A family caregiver may also be referred to as an informal caregiver because the term refers not only to members of the patient’s family, but to anyone with a significant personal relationship to the patient such as friends, partners, or neighbors.5
Different organizations have attempted at various times to estimate the number of family caregivers in the United States. Data from the late 1980s suggested that there were 29 million family caregivers for ill or disable persons aged 18 years or older.6 A decade later, the US Department of Health and Human Services estimated that there were 52 million family caregivers providing care to someone 20 years or older with an illness or disability.7 More recently, the National Alliance for Caregiving and American Association of Retired Persons (AARP) reported that 34 million adults, or 16% of the US population, provide care for adults aged 50 years and older.8 When comparing these disparate estimates, the AARP admonishes that many of those who provide such care do not identify themselves as family caregivers; as a result, AARP projects that the number of caregivers is likely closer to 65 million, representing nearly one-third of the US population over the age of 18.9
A 2008 update of that earlier AARP reports an estimated 30 to 38 million individuals age 18 or older who provide caregiving to an adult with a limited activities of daily living (ADL); this figure does not include those caring for children under 18 years with disabilities, caregivers under age 18, grandparents caring for grandchildren, or caregivers assisting adults with chronic health conditions but without ADL limitations.10 By whichever yardstick is used for measurement, the number of Americans serving as family caregivers is already substantial and anticipated to grow as the population ages.
Family Care Recipients
In its most recent survey of caregiver services, the California Caregiver Resource Center reported11 that the recipients of family caregiving are typically older women who live with family members and whose needs for care assistance have existed for fewer than 2 years. A more specific detailing of care receivers is provided in Table 2.
Health Conditions That Precipitate Need for a Family Caregiver
The circumstances that may lead to someone serving in the role of a family caregiver are many and varied. Although these share in common some relative or absolute loss of one or more functional abilities and/or the need for management of one or more persisting health problems, the onset of these impairments may be slow (eg, Alzheimer’s disease, other dementias, Parkinson’s disease, amyotrophic lateral sclerosis, multiple sclerosis, rheumatoid arthritis)11 or delayed (some brain tumors, sequelae following traumatic brain injury or blast injuries such as improvised explosive device detonation, or toxic complication associated with some chemotherapeutic agents such as 5-fluorouracil,12 or immediate (eg, stroke, gunshot injury to the head, spinal cord injury).
Even patients who might be expected to recuperate from an initial major diagnosis—for example, those with acute myocardial infarction, acute respiratory failure, or acute renal failure—may later progress to a chronic and debilitating stage of the condition that demands assistance from others for maintaining many aspects of a normal life. For patients such as those with severe head injury or posttraumatic stress disorder, who appear to have maximally recovered from their physical trauma, the balance of their life and that of their family may be marked by the need for ongoing management of enduring behavioral and functional after-effects.
Types and Value of Care That Family Caregivers Provide
There are 3 broad categories of care that family care-givers provide: ADL, instrumental ADL, and ministrations considered as nursing care. These categories and some of the inclusions within each are summarized in Table 3. It is estimated that more than 40% of caregivers provide various types of nursing care.13 Of the family caregivers who work with medical equipment and change dressings, however, 33% report receiving no instruction on how to perform these tasks from health care staff.16
Taken together, the value of these services that family caregivers provide is estimated to be $306 billion per year, or virtually twice the amount spent per year on home care and nursing home care combined ($158 billion).17 Other organizations estimate the value of those services at figures of $350 billion10 to $375 billion.5
Challenges Experienced by Family Caregivers
The toll of caregiving is often heavy and, at times, protracted. Some of the psychologic, physiologic, and economic effects experienced by family caregivers include emotional impact, depression, declining physical health, higher mortality, reduced work hours and wages, direct out-of-pocket costs, and reduced retirement income.
Regardless of the patient’s medical diagnosis or specific needs for care, 61% of caregivers report high stress levels resulting from their caregiving circumstances.11
Although the specifics of individuals’ caregiving situations may differ, the National Family Caregivers Association18 found that the common bond among caregivers is the emotional impact that caregiving has on their lives. The emotional impact of caregiving encompasses the following:
Frustration owing to altered family dynamics
Stress from the enormous responsibilities
Longing for a return to normalcy
Isolation due to living outside normal life
Depression over the losses caused by caregiving
Disappointment over noncaregivers’ lack of understanding
The most detrimental effects of caregiving appear to be waged on the caregiver’s psychological health. Within this area, depression is the most commonly reported problem by 20% to 50% of caregivers, with the highest levels associated with those caring for individuals with dementia.4
Declining Physical Health
Twenty-eight percent of caregivers reveal that their own physical health has declined over the past 6 months; 31% report having hypertension; 27% complain of back and neck problems; and 21% have sleep disturbances.11
Heart Failure Patients.
Nearly 90% of caregivers for patients with end-stage heart failure report sleep disturbances.18
Caregivers report having chronic conditions at rates nearly twice (45% vs 24%) that of individuals who are not caregivers.21
High levels of stress related to caregiving are associated with elevations of cytokine interleukin 6 at levels 4 times that of comparable individuals who are not caregivers.22
Caregiving as a Risk Factor.
In addition to elevated blood pressure, insulin levels, and incidence of cardiovascular risk factors, a widely-quoted study from 199923 reported that elderly spouses who experienced stress related to care-giving had a 63% higher mortality rate than counterparts at their same age who were not caregivers. Caregiving itself, then, appears to be a potentially lethal risk factor.
Family caregivers who experience extreme levels of stress associated with caregiving may have a lifespan 10 years shorter than adults of comparable ages who are not caregivers.24 A wife’s hospitalization increases her husband’s likelihood of dying within a month by 35%, whereas a husband’s hospitalization raises his wife’s risk of dying by 44%.25
Financial Implications of Caregiving
Reduced Work Hours and Wages.
Most caregivers need to make adjustments to their work schedule, ranging from arriving to work late (83%), taking a leave of absence (41%), switching from full- to part-time work (37%), giving up work entirely (35%), losing work benefits (15%), and turning down a promotion (14%).8 Seven percent of care-givers took a leave of absence, family leave, medical leave, or early retirement in order to provide caregiving.11
For middle-aged women, caregiving reduces paid work hours by abut 41%.26
Fifteen percent of family caregivers quit their jobs or reduced the number of their work hours because of the need to provide care, thereby also reducing their salary and paid benefits, including retirement and health insurance.11
US businesses can incur $34 billion loss per year attributable to workers’ needs to care for loved ones.27
About 50% of family caregivers spend an average of $200 per month for groceries, medicine, or other types of cash support. Caregivers who spend the most report spending $324 per month ($3888/year) in financially supporting the care recipient.10
A study funded by the National Institute on Aging13 reported that women who are family caregivers are 2.5 times more likely to live in poverty than women who are not caregivers.
Reports as far back as 20 years ago28 estimated that family caregivers lose more than $25000 in Social Security benefits, nearly $70000 in pension benefits, and more than $567000 in wages because of their caregiving contributions.
Reduced Retirement Income.
Reduction in work hours reduces Social Security benefits and job security, limits or eliminates access to employer-sponsored retirement accounts, limits contributions to participatory pension plans, and limits or eliminates saving for emergencies or other retirement needs.26
Needs of Family Caregivers
Considering the challenges faced by family caregivers, it is not difficult to anticipate that their most pressing and enduring needs will relate to identifying ways to lighten their considerable burden while affording some modicum of support in their efforts. According to the California Caregiver Resource Center11 and the Family Caregiver Alliance,29 the 3 greatest needs that caregivers report are as follows:
General information, identified by 65% of caregivers
Emotional support, identified by 51%
Respite care, identified by 50%
Other priority needs that caregivers report are summarized in the FigureF1.
Resources for Nurses to Assist Family Caregivers
A variety of resources are available to assist critical care nurses in supporting family caregivers for the transition and discharge of a critically ill patient to the home setting. Although there is an abundance of online resources directed at caregivers, this section focuses on information and materials developed for health care professionals to assist caregivers in their role.
The Family Caregiver Alliance is in the formative stages of designing what it refers to as “an Innovations Clearinghouse on Family Caregiving,” a repository of cutting edge public policies, procedures, programs, evidence-based practices, as well as educational opportunities and an online national community assembled to advance and advocate for the family caregiver role. Already available at their Web site31 are 2 complementary sets of tools and resources, one for caregivers and one for health care professionals. For professionals, one section contains highlights of programs selected for their innovative approaches to program development for caregiver families and a second area contains a plethora of programs and tools selected for their value in augmenting professionals’ knowledge and ability to support family care-givers. A small preview of the contents available in this set of tools and resources can be found in Table 4.
Strategies Your Facility Has Found Effective in Supporting Family Caregivers
Health care institutions across the United States and around the world discharge patients from critical care units every day, handing off these patients at times to other nurses in less acute care areas and, at other times, directly into the arms of the family members who will care for them at home.
Critical Care Nurse would like to hear about the strategies and approaches your organization has developed to support and lighten the burden of family caregivers. Please e-mail brief descriptions of your programs to us by August 15, 2009, at GrifCCN@comcast.net, using a Subject line of “Supporting Family Caregivers.” Tell us your success stories and we will compile these and communicate them to all CCN readers as soon as possible. Help us help you to provide the best possible care to both critically ill patients and their families.