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This chapter summarizes patient safetyand quality evidence from both of these perspectives. The focus is on the adult caregiver who provides care and support primarily for adults with chronic illnesses and chronic health problems. The focus is not on those with developmental disabilities. In the first section, we discuss the evidence for protecting the caregiver from harm. The second section addresses research aimed at protecting the care recipient from an ill-prepared family caregiver.
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The terms family caregiver and informal caregiver refer to an unpaid family member, friend, or neighbor who provides care to an individual who has an acute or chronic condition and needs assistance to manage a variety of tasks, from bathing, dressing, and taking medications to tube feeding and ventilator care. Recent surveys estimate there are 44 million caregivers over the age of 18 years (approximately one in every five adults).1 The economic value of their unpaid work has been estimated at $257 billion in 2000 dollars.2 Most caregivers are women who handle time-consuming and difficult tasks like personal care.3 But at least 40 percent of caregivers are men,3 a growing trend demonstrated by a 50 percent increase in male caregivers between 1984 and 1994.4 These male caregivers are becoming more involved in complex tasks like managing finances and arranging care, as well as direct assistance with more personal care.5 Nurses are likely to see many of these caregivers, although many of them will not identify themselves as a caregiver.
Caregivers spend a substantial amount of time interacting with their care recipients, while providing care in a wide range of activities. Nurses have a limited view of this interaction. Caregiving can last for a short period of postacute care, especially after a hospitalization, to more than 40 years of ongoing care for a person with chronic care needs. On average, informal caregivers devote 4.3 years to this work.8 Four out of 10 caregivers spend 5 or more years providing support, and 2 out of 10 have spent a decade or more of their lives caring for their family member.9 This is a day-in, day-out responsibility. More than half of family caregivers provide 8 hours of care or more every week, and one in five provides more than 40 hours per week.1
Burton and colleagues38 examined the relationships between provision of care by family members and their health behaviors and health maintenance. These researchers found that, with a high level of caregiving activities, the odds of the caregiver not getting rest, not having time to exercise, and actually not recuperating from illness were also high. In addition, caregivers were more likely to forget to take their prescriptions for their own chronic illnesses. Providing care poses a threat to the overall health of caregivers, which can compromise their ability to continue to be caregivers. If caregivers are to continue to be able to provide care, relief from the distress and demands of maintaining the required care must be considered.
Low personal and household incomes and limited financial resources can result in increased caregiver risk for negative outcomes, particularly if there are substantial out-of-pocket costs for care recipient needs.45 Caregivers who are unemployed or have low incomes may experience more distress because they may have fewer resources to meet care demands. Overall, financial concerns cause particular distress for caregivers during long treatment periods,52, 53 as resources become depleted. Higher-income families, with greater financial resources to purchase needed care, might not become as distressed or burdened as those with limited resources.54
The literature provides substantial evidence that caregivers are hidden patients in need of protection from physical and emotional harm. Interventions directed to the family caregiver should serve two purposes (see Evidence Table). First, interventions can support the caregiver as client, directly reducing caregiver distress and the overall impact on their health and well-being. In this intervention approach, the caregiver is the recipient of the direct benefit and the patient benefits only secondarily. Second, interventions can be aimed to help make the caregiver become more competent and confident, providing safe and effective care to the patient, which can indirectly reduce caregiver distress by reducing their load or increasing their sense of certainty and control. In this section, we focus on the research evidence supporting caregivers as clients.
Recent meta-analyses of caregiver interventions found mixed results, which are important to note. Multicomponent interventions, rather than single interventions like support groups or education, significantly reduced burden.69, 70 Other interventions found no reductions in burden, but significant improvements in caregiver knowledge and delayed nursing home admission for care recipients.71 Sorenson and colleagues72 found that interventions aimed at individual caregivers were more effective in improving caregiver well-being than group interventions, although group interventions were more effective in improving care-recipient symptoms. Reasons for this are unclear. The effectiveness of caregiver interventions lasts approximately 7 months. Few studies are funded for long-term followup.
Comprehensive counseling sessions for spouses caring for a person with dementia help reduce depression.73 Counseling appeared to be effective in improving the quality of life for caregivers of stroke survivors.74 However, even a simple one-to-one telephone call may be effective in helping the caregiver as client. An automated, interactive voice-response telephone support system for caregivers reduced burden for those caregivers with a lower sense of control over their situation.75 Davis and colleagues76 found an unexpected reduction in burden and distress for caregivers receiving friendly, socially supportive phone calls that provided some respite from caregiving, even without in-home caregiver skills training. Home visits and enhanced social support also can help reduce caregiver depression.77, 78
Zarit and colleagues79 used a quasi-experimental design to demonstrate that caregivers who used adult day care services for their relatives with dementia had significantly lower levels of caregiver stress, anger, and depression after 3 months of this respite care than a control group of similar caregivers who did not obtain this intervention. Sorenson and colleagues72 also found that respite/day care interventions effectively reduced caregiver depression and increased well-being.
Houts and colleagues81 describe a prescriptive program that is based on research on problem-solving training and therapy. Designed to empower family members to moderate caregiver stress, the Prepared Family Caregiver model is summarized in the acronym COPE (Creativity, Optimism, Planning, and Expert information). COPE teaches caregivers how to design and carry out plans that focus on medical and psychosocial problems that are coordinated with care plans of health professionals. Although proponents of this program assert it has positive outcomes for caregivers, a formal evaluation of COPE was not found.
Twenty-five years of research have documented that the work of family caregiving can be stressful. That stress can adversely harm both the caregiver and the care recipient. This section addresses research aimed at protecting the care recipient from an ill-prepared or emotionally stressed family caregiver. It describes the link between the work of caregiving and patient harm, and examines interventions that aim to make the caregiver a better worker and less likely to harm the patient.
A second concern is that the demanding work of caregiving can put caregivers at risk of engaging in harmful behaviors toward their care recipients, particularly among caregivers of persons with cognitive impairments.85 Depressed caregivers are more likely to harm their spouses. Caregivers who are at risk of depression while caring for spouses with significant cognitive or physical impairments are more likely to engage in neglect or abusive behaviors, such as screaming and yelling, threatening to abandon or use physical force, withholding food, hitting, or handling roughly.63
In general, family members may be challenged to find the capacity or ability to provide care, but Fulmer86 found that caregivers who were in poor health or from low-income or dysfunctional situations might have the most limited capacity to provide needed care. They also might not understand the standard for quality and might not provide the level of care that is needed.
The presence of dementia and cognitive behavioral problems put the care recipient at risk for abusive behaviors by the caregiver.86, 87 Neglect may also occur, including neglect of nutrition and access to food, unmanaged pain, urinary incontinence, and falls. Caregiver neglect may occur because the dementia patient is unable to communicate and the caregiver is unable to understand or know how to deal with nutritional intake and pain management. Mittelman and colleagues88, 89 found that counseling and support for caregivers who face disruptive behaviors from their ill family members will decrease their stress over their multiyear caregiving responsibility.
When there is family conflict, there is less assistance to the patient. Bourgeois and colleagues94 looked at the consequences of disagreement between primary and secondary caregivers and found divergence in perceptions. There was, however, more agreement on patient behaviors and caregiver strain. Primary caregivers with pessimistic secondary caregivers were less distressed than those with optimistic ones. Given and Given18 found that secondary caregivers left the care situation over time and only returned with increased physical care needs. Caregivers may also relinquish caregiving when they are unsuccessful in maintaining a relationship or when the care becomes difficult, such as when the care recipient loses cognitive function. Conflicts can also occur with unfulfilled or mismatched aid. Negative interactions with kin include despairing comments on caregiving, caregiver health status, and criticisms of care decisions.95, 96