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Hughes RG, editor. Patient Safety and Quality: An Evidence-Based Handbook for Nurses. Rockville (MD): Agency for Healthcare Research and Quality (US); 2008 Apr.

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Patient Safety and Quality: An Evidence-Based Handbook for Nurses.

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Chapter 14Supporting Family Caregivers in Providing Care

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Most patients have families that are providing some level of care and support. In the case of older adults and people with chronic disabilities of all ages, this “informal care” can be substantial in scope, intensity, and duration. Family caregiving raises safety issues in two ways that should concern nurses in all settings. First, caregivers are sometimes referred to as “secondary patients,” who need and deserve protection and guidance. Research supporting this caregiver-as-client perspective focuses on ways to protect family caregivers’ health and safety, because their caregiving demands place them at high risk for injury and adverse events. Second, family caregivers are unpaid providers who often need help to learn how to become competent, safe volunteer workers who can better protect their family members (i.e., the care recipients) from harm.

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.

Caregivers as Clients

For centuries, family members have provided care and support to each other during times of illness. What makes a family member a “family caregiver”? Who are these family caregivers, what do they do, and what harm do they face? What does the research tell us about ways to assess the needs of these hidden patients and evidence-based interventions to prevent or reduce potential injury and harm? This section answers these questions and highlights the need for nurses to proactively approach family caregivers as clients who need their support in their own right.

Description of Caregiver Population

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.

Those caring for someone 50 years or older are 47 years old—on average—and working at least part-time.1 If they are providing care to an elder who is 65 years or older, they are, on average, 63 years old themselves and caring for a spouse; one-third of these caregivers are in fair to poor health themselves.6 In many cases, they are alone in this work. About two out of three older care recipients get help from only one unpaid caregiver.7 In the last decade, the proportion of older persons with disabilities who rely solely on family care has increased dramatically—nearly two-thirds of older adults who need help get no help from formal sources.4

Caregiver Responsibilities

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

Most researchers in the caregiving field conceptualize the care that family members give as assistance with activities of daily living (ADLs) and instrumental activities of daily living (IADLs). But those concepts do not adequately capture the complexity and stressfulness of caregiving.9 Assistance with bathing does not capture bathing a person who is resisting a bath.10,11 Helping with medications does not adequately capture the hassles of medication administration,12 especially when the care recipient is receiving multiple medications several times a day, including injections, inhalers, eye drops, and crushed tablets. The need to make decisions on behalf of family members who are unable to do so is stressful, as this is contrary to the caregivers’ normal role, and they are concerned that the decisions are correct. Supervising people with dementia and observing for early signs of problems, such as medication side effects, are serious responsibilities as family members are often unable to interpret the meaning or the urgency. The medical technology that is now part of home care and the frustrations of navigating the health care system for help of any kind is not even part of the ADL/IADL measures.13 Being responsible for medical and nursing procedures like managing urinary catheters, skin care around a central line, gastrostomy tube feedings, and ventilators is anxiety provoking for the novice nursing student, but is becoming routine family care of persons with chronic illnesses living at home.

Family caregivers often feel unprepared to provide care, have inadequate knowledge to deliver proper care, and receive little guidance from the formal health care providers.14–16 Nurses and family caregivers rarely agree about specific needs or problems during hospital admission or discharge,17 in part because nurses are often unaware of the strengths and weaknesses of both the patient and caregiver. Due to inadequate knowledge and skill, family caregivers may be unfamiliar with the type of care they must provide or the amount of care needed. Family caregivers may not know when they need community resources, and then may not know how to access and best utilize available resources.18 As a result, caregivers often neglect their own health care needs in order to assist their family member, causing deterioration in the caregiver’s health and well-being.19–21

Caregivers get very little help from health careprofessionals in managi ng their tasks and the emotional demands of caregiving. Among the greatest challenges for family caregivers is interacting with nurses and other professionals in the hospital setting, and a rough crossing back home, as the patient is “discharged to family.”22 Naylor’s review23 of nearly 100 studies published between 1985 and 2001 confirms that breakdowns in care during the transition from hospital to home result in negative outcomes. Health professionals in emergency departments and inpatient hospital settings do not adequately determine the after-care needs of older patients when they are being discharged.

Effective discharge planning is impeded by gaps in communication between the hospital and community interface, such as illegible discharge summaries and delays in sending information to the physician.24 Focus groups of caregivers found that they experience their family member’s discharge from the hospital as an abrupt and upsetting event because the hospital staff did not prepare them for the technical and emotional challenges ahead of them. Many caregivers felt abandoned at a critical time, and none of the focus group participants had been referred by any health care professional in the hospital to community-based organizations for emotional support—or any other kind of support.22

Hazards of Caregiving

Health professionals’ lack of explicit attention to caregivers is a serious gap in health care in light of the more than two decades of research that documents the potential hazards of family caregiving. Caregivers are hidden patients themselves, with serious adverse physical and mental health consequences from their physically and emotionally demanding work as caregivers and reduced attention to their own health and health care.

Declines in physical health and premature death among caregivers in general have been reported.21, 25 Given and colleagues18, 19 and Kurtz and colleagues26 found that family caregivers experience significant negative physical consequences as the patient’s illness progresses. Elderly spouses who experience stressful caregiving demands have a 63 percent higher mortality rate than their noncaregiver age-peers.21 Most recently, research documents that elderly husbands and wives caring for spouses who have been hospitalized for serious illnesses face an increased risk of dying prematurely themselves.27

Declines in caregiver health have been particularly associated with caregivers who perceive themselves as burdened.21 Caregiver burden and strain have been related to the caregiver’s own poor health status, increased health-risk behaviors (such as smoking), and higher use of prescription drugs.28 Researchers have reported that caregivers are at risk for fatigue and sleep disturbances,29 lower immune functioning,30, 31 altered response to influenza shots,32 slower wound healing,33 increased insulin levels and blood pressure,34, 35 altered lipid profiles, 36 and higher risks for cardiovascular disease.37

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.

Both highly negative and highly positive consequences of providing care may exist simultaneously.39 It is plausible that positive consequences, such as rewards and satisfaction, may buffer the negative effects of caregiving. Positive aspects of caregiving are important,40–42 some researchers are now using a caregiver rewards scale to better understand caregivers’ experiences.41, 42 Other researchers are exploring the positive aspects of care as the mutuality between the patient and caregiver develops.40 Archbold and colleagues40 demonstrated that mutuality and preparedness did reduce some of the strain on the caregiver. Picot and colleagues41, 42 worked primarily with African American caregivers and found that the rewards perceived by caregivers were more important than coping. A specific Picot Caregiver Reward Scale of 25 items exists and has been widely used to show that both rewards and costs can exist in the same care situation.

Caregivers who attempt to balance caregiving with their other activities, such as work, family, and leisure, may find it difficult to focus on the positive aspects of caregiving and often experience more negative reactions, such as an increased sense of burden.43–45 Regardless of amount of care provided, caregivers may become increasingly more distressed if they are unable to participate in valued activities and interests.46 More than half of adult children who provide parent care are employed.7 Caregiving responsibilities can have a negative effect on work roles as caregivers adapt employment obligations to manage and meet care demands.47, 48 Caregivers who are employed report missed days, interruptions at work, leaves of absence, and reduced productivity because of their caregiving obligations. They have difficulty maintaining work roles while assisting family members.46 On the other hand, employment provides some caregivers respite from ongoing care activities and serves as a buffer to distress.49–51

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

Caregiver burden and depressive symptoms are the most common negative outcomes of providing care for the elderly and chronically ill.20, 55, 56 Caregiver burden is defined as the negative reaction to the impact of providing care on the caregiver’s social, occupational, and personal roles57 and appears to be a precursor to depressive symptoms.58 Whether the caregiver develops negative outcomes seems to be directly related to the care recipient’s inability to perform ADLs, either due to physical limitations or cognitive status.51 If the care recipient wanders (associated with Alzheimer’s disease) or displays unsafe behavior, the caregiver has to be alert and on call for supervision 24 hours per day. The constant concern for managing disruptive behaviors (such as turning on stoves, walking into the street, taking too many pills, yelling, screaming, or cursing) also affects the caregivers negatively.

Care recipients’ functional, cognitive, and emotional status predicts caregiver burden and depression,58–62 which may be manifested in feelings of loneliness and isolation, fearfulness, and being easily bothered, as the demands of caregiving limit their personal time.58 Care recipient behavior such as screaming, yelling, swearing, and threatening are associated with increased caregiver clinical depression.63 Caregiver depression may also have a somatic component, such as anorexia, fatigue, exhaustion, and insomnia.64

Caregivers may suffer severe fluctuations in sleep patterns over time, which may affect depression65 and exacerbate symptoms of chronic illnesses. Pain management is an intractable problem for caregivers that results in substantial caregiver distress, as caregivers assist with both nonpharmacologic and pharmacologic pain-management strategies.66–68

Research Evidence: Interventions for Caregivers as Clients

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.

Evidence Table

Evidence Table

Supporting Family Caregivers in Providing Care

Despite the importance of information and support to help family caregivers, studies on interventions to increase support for family caregivers have lagged far behind those provided for patients. A focus on the family as a part of the patient’s therapeutic plan of care is largely absent from interventional research and from general clinical practice as well. Few randomized clinical trials of educational interventions directed toward family caregivers have been conducted or published, and there is limited research to inform us about skills training for caregivers to prevent back injuries, infection, and other potential risks inherent in the caregiver situation.

Interventions To Reduce Burden and Distress

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.

Interventions To Improve Competence and Confidence

Smeenk and colleagues80 investigated the quality of life of family caregivers who received a home care intervention that consisted of a specialist nurse coordinator, a 24-hour nurse telephone service with access to a home care team, a collaborative home care dossier and case file, and care protocols. The care dossier was used to assist with communication and coordination between caregivers and health professionals. The dossier included the lists of the patient’s caregivers, discharge reports, nursing home case transfer reports, medication lists, and multidisciplinary reports. From these reports, specific patient intervention approaches were developed. The intervention significantly improved caregiver quality of life at 1 week and 4 weeks after discharge from the hospital.

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.

Teaching caregivers how to manage specific patient problems can improve the caregiver’s well-being. For example, not being able to sleep at night is a serious problem for caregivers of people with Alzheimer’s disease, as the caregivers become fatigued and exhausted, which can have an adverse effect on both the physical and emotional health of the caregiver. Teaching them how to improve their family members’ nighttime insomnia through daily walks and exposure to light can improve sleep time for both the caregiver and care recipient.82 Even caregivers providing end-of-life care can benefit from structured interventions. McMillan and colleagues83 found that a skills and coping training intervention with family caregivers of hospice patients improved the caregivers’ quality of life.

Caregivers as Providers

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.

The Potential for Harm

Caregivers can place their family members at risk in two ways, and both situations are preventable. First, despite their good intentions and hard work, if caregivers do not have the knowledge and skills to perform their work, they may unintentionally harm their loved one. This risk for injury is directly related to lack of knowledge and competence, which can be improved through caregiver education and support. For example, a recent study confirmed that patients had many negative outcomes when untrained informal caregivers managed their home enteral nutrition or tube feeding.84 Problems included tube displacement, tube clogging, infection, and dehydration—all of which can lead to a stressful caregiving situation and hospital readmission.

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 risk of elder abuse

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.

Medication errors

With regard to caregiver knowledge and skills, an important example of the potential to harm the patient is caregivers’ administration of medications. A substantial number of community-dwelling elders do not recall receiving any instructions on taking their medications.90 They often rely on family members for help in taking them. Travis and colleagues12 found that caregivers manage between one and 14 medications on a daily basis, have difficulty keeping so many prescriptions filled, and often miss doses due to their work schedules. Their responsibility to monitor for adverse or toxic effects in family members who are not capable of reporting problems themselves is important in preventing dehydration brought on by vomiting and diarrhea, and even more serious emergency situations. Caregivers need education to recognize both classic and atypical adverse drug effects they may see as their family member’s condition changes, and help in developing the critical thinking skills that would enable them to manage these potential problems.

Neglect and family conflict

The caregiver’s perception of the care situation is crucial in understanding the potential for harm. The amount of “bother” the caregiver perceives in relation to the patient’s symptoms affects the caregiving context. Caregivers bothered by symptoms tend to inaccurately assess patients’ symptoms, particularly patients’ pain and patients’ ability to care for self.91–93

Neglect is more common when the caregiver is depressed or distressed. It interferes with the person’s ability to make observations and to identify needs or provide social stimulation for their ill family member. When caregivers themselves are distressed, burdened, or depressed, they might leave elders alone for long periods of time, ignore them, or fail to provide any companionship or interaction.86 Annerstedt and colleagues report on the breaking point of caregivers providing care for patients with dementia.59 When caregivers have a high level of burden, care becomes inadequate. The amount of care demands and time per week, impaired sense of own identity, clinical fluctuations in the patient, and nocturnal deterioration in the patient predict the caregiver breaking point.

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

Research Evidence: Interventions for Caregivers as Providers

Interventions designed to help the caregiver become a more competent and confident provider are important to ensure that the patient receives safe and effective care. These interventions are aimed at: preventing abuse and neglect, and improving the caregiver’s knowledge and skills; supporting caregivers with early identification of patient problems and managing patient care; developing psychomotor skills training for the safe administration of medications and use of equipment; and enhancing emotional and coping skills to deal with the caregiver’s anger and frustration. In these situations, interventions, such as role playing and rehearsal, are designed to help the caregiver better understand how to communicate with the care recipient and manage negative reactions, or remove the care recipient from a dangerous caregiving situation. A focus on the former may help prevent the latter. All of these interventions can strengthen caregivers’ competence and reduce harm to the patients under their care.

Strengthening Caregiver Competence

Strengthening caregivers’ competence and confidence improves their mastery, defined as the amount of control that a person feels over the forces that are impinging upon him or her.97 Caregivers with higher levels of mastery of the care situation have more positive responses to providing care98, 99 because they perceive themselves as able to meet care demands.100, 101 Caregiver mastery can reduce caregiver distress by influencing the availability of healthy problem-coping strategies to meet care demands.102, 103 The control associated with caregiver mastery is also associated with a lower stress response and more positive health-related behaviors among caregivers.104

Caregivers require knowledge, skills, and judgment to carry out the tasks of care for patients, and research has shown that caregivers who feel prepared to deliver care (i.e., have the knowledge and skills needed) have less burden.15 Providing care takes into account the following dimensions: (a) the nature of the tasks; (b) the frequency with which tasks are performed; (c) the hours of care provided each day; (d) the skills, knowledge, and abilities of caregivers to perform tasks; (e) the extent to which tasks can be made routine, and thus incorporated into daily schedules; and (f) the support received from other family members. Caring for patients ranges from providing direct care, performing complex monitoring tasks (e.g., monitoring blood sugar, titrating narcotic dosages for pain), interpreting patient symptoms (e.g., determining the fever level to report to a health care provider), assisting with decisionmaking, and providing emotional support and comfort. Each type of involvement demands different skills and knowledge, organizational capacities (e.g., obtaining needed community services or ordering the best wheelchair), role demands, and social and psychological strengths from family members.16, 104, 105 Each of these is a potential area of concern for patient safety and caregiver distress.

Developing Task-Specific and Problem-Solving Skills

Despite the overall lack of interventional research with caregivers, there is some evidence that interventions designed to improve specific caregiving tasks are helpful. For example, Ferrell and colleagues106 examined the impact of pain education on family caregivers who were providing care to elderly patients with cancer. The pain education program included pain assessment, pharmacologic interventions, and nonpharmacologic interventions. The pain education program helped improve caregivers’ knowledge and attitudes about managing their family members’ pain. Other researchers have found that interventions to build skills and problem-solving abilities help caregivers of persons with Alzheimer’s disease by decreasing negative behavior in those they care for.107 Weekly telephone interventions to help caregivers of stroke survivors problem-solve led to reduced depression.108

Another example of specific training found nurse-initiated interventions to teach older adults and their caregivers about safe medication administration resulted in significant improvements in the ability to name prescribed medications and their administration schedules correctly.109 This knowledge base is essential for caregiver competence and patient safety.

Several interventions have been aimed at assisting caregivers to develop problem-solving skills. For example, Toseland and colleagues110 and Blanchard and colleagues111 implemented a randomized trial (Coping with Cancer) using a psychosocial intervention aimed at spouses of cancer patients. A six-session problem-solving intervention was designed to help spouses cope with the stress of caring for their partners. Intervention components included support, problem-solving, and coping skills. There was little change over time with respect to caregivers’ levels of depression, perhaps because the level of caregiving activities was low. This kind of problem-solving training may be more critical for caregivers who spend more time providing care.

Psycho-Educational Interventions

The majority of intervention studies for caregivers have utilized a psycho-educational intervention. That is, the intervention emphasizes both the provision of information and a psychological/counseling approach to decrease caregiver distress. Although not explicated as such, these interventions aim to address caregivers as both clients and providers.

A randomized clinical trial designed to test the effects of a psycho-educational intervention for caregivers and patients with newly diagnosed cancer who had recently initiated chemotherapy had a positive effect on reducing caregiver depression.112 Four months after attending a psycho-educational caregiver cancer education program that addressed symptom management, psychosocial support, and resource identification, the number of caregivers who reported being well informed and confident about caregiving increased.113

Training caregivers in a multiracial primary care setting about specific ways to manage behavioral disturbances appears promising.114 Anger and depression management interventions decreased anger, hostility, and depression and improved the caregiver’s sense of control.115 Caregivers received moderate support from an AlzOnline’s Positive Caregiving classes, in part because they felt an increased sense of control over their caregiving situation.116 An intervention to teach management of behavioral problems and basic activities of living left caregivers feeling less upset and more capable of managing difficult behaviors.100 Similar findings were demonstrated for a portable CD-ROM training program for caregivers of people with dementia.117

Navigating the Service Delivery System

Family members must interact with the health care system to obtain information, services, and equipment, as well as to negotiate with family and friends to enlist and mobilize support. Interventions to increase caregivers’ knowledge about community services and how to access them can increase their sense of competence and reduce depression.118 Caregivers’ involvement in direct and indirect care changes over time, in response to the stage of illness and treatment, and caregivers must be able to adapt to changes in the amount, level, and intensity of care demands. Given and colleagues19 describe that it was not the amount of care itself, but the change in care demands (either increased or decreased) that resulted in caregiver distress. Change requires constant adaptation and adjustment by the caregivers, which translates into adapting to different schedules, changing routines, and accommodating other roles for which family caregivers are responsible.

One of the most essential aspects of navigating the system is finding home- and community-based services, and determining what private and public programs might be available. The public sector side is particularly complex. People who are very frail and below or close to the poverty line can receive home care under Medicaid. Much of this care is provided through a home health agency. Through the authority of section 1915(c) of the Social Security Act, States can request Federal permission to provide a range of services, which may include respite service for family caregivers. Benefits vary by State, but research documents an increasing trend in the numbers of people served and dollars spent in Medicaid home- and community-based care. In addition, policymakers are facing pressure to increase these services to address the unmet needs of patients and their families.119 A study examining the benefits and costs of home- and community-based services in Florida120 found that people receiving these services had been diagnosed with at least three chronic health conditions and needed help with three or more ADLs and seven IADLs. With services, they were able to avoid institutionalization despite this high level of needs. Other research has shown that the presence of a caregiver can reduce nursing home stay by 3.2 days. These caregivers need help finding services.

Options for arranging flexible services are emerging from Medicaid-funded consumer-directed care programs, which allow people to select and manage paid home care workers, as well as purchase assistive devices or home modifications. The program gives people the flexibility to adjust the frequency and timing of paid and unpaid services. Benjamin and colleagues examined the services of low-income Medicaid beneficiaries under agency-directed and community-directed services. People who directed their own services had positive outcomes. They were more satisfied with services and had fewer unmet needs.121 Foster and colleagues122 assessed the impact of consumer direction on caregiver burden in Arkansas and found that caregivers had greater satisfaction with the care recipient’s care and were less worried about safety. Caregivers in the study reported less physical, emotional, and financial strain compared to the control group receiving traditional agency services. Primary informal caregivers who became paid caregivers reported substantial benefit compared to the group receiving agency services.

Evidence-Based Practice Implications

A review of the literature found that society depends on family caregivers to continue providing care for their loved ones, but does little to teach them how to do it and support them in this stressful work. At a minimum, nurses can recognize and respect their efforts, assess their needs, provide concrete instructions on the specific care they are giving (e.g., medication administration, dressing changes, and similar tasks), and refer them to potential sources of ongoing help. Nursing interventions in these areas can help reduce harm to caregivers and the patients they serve.

Respecting the Patient–Family–Professional Triad

The most important practice implication of this review of caregiving research evidence is that nurses can meaningfully change the course of caregiving for both the caregiver and care recipient by respecting the role that each has in managing ongoing care beyond the classic boundaries of professional patient care. For example, it is often not easy for the elderly patient in the hospital who is going to need postacute care to accept the need for family help, because they view themselves as independent. Nurses can help shift their views of classic independence as freedom from functional limitations to a context of family care in which giving and receiving assistance does not need to strip away autonomy.123 It is also important to understand that burdened caregivers can successfully support their family member, but these caregivers may need help to bolster their sense of self-esteem.124 They want to be part of the decisionmaking team.125

Nurses in all practice settings need to partner with patients and their families to move from the traditional nursing context of doing for clients in the “expert model of service delivery” to more mutuality in nurse-client relationships.126 Nurses may need to “enact more empowering partnering approaches” and “reframe their professional image, role, and values”126 to accomplish this. Listening skills and the ability to interpret body language and verbal communication are essential competencies in all encounters with patients and their family members.127

This model is consistent with Dalton’s theory of collaborative decisionmaking in nursing practice triads, where the triad comprises the client, the nurse, and the caregiver.128 In this vision of the caregiving environment, the nurse interacts with and assists not only consumers, but the informal caregiver as well. This kind of collaboration can increase feelings of control over health, the sense of well-being, and compliance with prescribed treatments.

Providing Information

Nurses need to communicate effectively with clients and caregivers to develop cost-effective plans of care and achieve positive client outcomes.129 Communication is crucial across settings. The emergency room and hospital discharge planning processes, assisted living facility admission process, skilled nursing facility discharge process, and the home health care admission and discharge process are all critical points of interaction where health care professionals, patients, and family caregivers can benefit from respectful, high-quality communication.130 In the managed care environment, providing concrete care information along with emotional support can help spouses of frail older adults better manage their caregiving situation.118

At all points in the patient’s disease trajectory, caregivers need information to deal with the patient’s care and treatment demands. Nurses and other health care providers should not expect caregivers to be responsible for sorting out relevant information and applying it to the care requirements for their family members. Research documents that caregivers have difficulty obtaining information from health care professionals, particularly physicians and nurses.131–133 Professionals should be more responsive to patients’ and family members’ information needs.

It is important to provide information in a clear, understandable way through verbal, written, and electronic methods. Caregivers want concrete information about medications, tests, treatments, and resources. They also want time to have their questions answered. Nurses can provide anticipatory guidance for what the caregiver can expect.134 This kind of information can relieve caregivers’ distress arising from uncertainties about their ill family members’ disease and treatment status and the care they may need.135, 136 For example, teaching caregivers how to manage pain and other symptoms benefits both the patient and the caregiver. Caregivers who report more confidence in managing symptoms report less depression, anxiety, and fatigue.137

Caregiver Assessment

Given caregivers’ essential role in caring for their family members and the hazards they face in doing so, their needs and capacities to provide care should be carefully assessed.138 This assessment should focus on the caregiver as both client and provider before health professionals can assume caregivers are able to provide competent care without harming themselves or their family member.

Assessing the home and family care situation is important in identifying risk factors for elder abuse and neglect. Heath and colleagues87 found that in-home geriatric assessments are needed to determine the risk for and occurrence of elder care recipient mistreatment. Fulmer’s research86 documents the need for interdisciplinary teams in emergency rooms to screen for elder neglect, with attention to risk factors associated with caregiver and elder vulnerability, such as the elder’s cognitive and functional status and depression. Health care professionals who conduct detailed assessments of the caregiving situation through separate conversations with the patient and the caregiver are better prepared to provide guidance and collaborate with the family to prevent abuse and neglect.

Assessing the needs of older people living in the community is a prerequisite for helping caregivers find resources and adhere to a comprehensive plan of care. Outpatient geriatric evaluation and management can reduce caregiver burden, particularly for those who are less experienced caregivers.139

Linking Caregivers to Resources

Caregivers need adequate resources to assure minimization of risk to the patient.140 To reduce the rough crossing that family caregivers experience as they navigate the discharge from hospital to home, there is a clear need to develop referral criteria and guidelines, accurate documentation, and prompt referral to continuing care professionals.24 More case management programs may be useful to help ease this transition, promote safe and effective hospital discharges, and support caregivers in their ongoing, posthospital care. Nurses, preferably those trained in gerontological nursing, have a key role in case management for frail older people.141

Linking caregivers to resources throughout the disease trajectory is important because caregivers are often unaware that there are support services available to help them. A recent study of caregivers of people with Alzheimer’s disease found that 75 percent had unmet needs, yet only 9 percent had used respite services and only 11 percent had participated in support groups.142 Extending nursing care beyond the hospital boundary, nurses can help caregivers mobilize supportive resources in their natural network as well as formal services.143

Research Implications

Taken as a whole, interventions to improve caregiver outcomes have been varied. Intervention studies have typically been descriptive in nature, used small convenience samples, and have not included comparison groups. In addition, many studies have limited their samples to patients with only a single diagnosis. In the future, randomized trials are needed to substantiate the role of similar programs in enhancing caregiver skills and minimizing caregiver distress.

The majority of studies have focused on a single construct of the care situation (i.e., examining the correlation between the caregiver-patient relationship and caregiver burden). Researchers have given limited attention to the nature of the knowledge and skills of the caregiver, and to personality factors or dispositions of caregivers.144, 145 Most of the intervention studies did not consider potential confounding or risk variables, such as prior family relationships, cultural variation, caregiver health status, stage of disease, hours of care, or competing caregiver role demands. In addition, little detail was provided about the intervention design. Finally, few studies described the nature of care tasks of the caregiver, so we are unaware whether caregivers were effectively managing symptoms, providing emotional support, providing direct care, monitoring patient status, or performing a combination of these tasks.

Recommendations for Future Research

Since much of the caregiving research remains descriptive, there are many gaps in the evidence-based research to promote patient safety and quality carefor caregivers as secondary patients and caregivers as providers to vulnerable patients. To advance our knowledge in this field, we recommend several strategies for future research.

Because caregiving is a day-in, day-out role that fluctuates as the needs of the care recipient change, it is not well understood through cross-sectional research designs. It is essential that descriptive and longitudinal designs be employed to follow the care requirements over the course of the illness trajectory. Longitudinal research to date has uniform intervals between observations such as 3, 6, or 9 months, without concern for treatment protocol or stage of disease or care demands. Further studies should take into consideration other time points that may better reflect the disease trajectory, such as time of initial diagnosis, protocols alterations, and points of disease exacerbation or decline. A special focus on safety, risk for negative outcomes, and adverse effects for both the caregiver and care recipient should be noted.

Key variables to include in these studies are the type and stage of the disease and the treatments because they will be related to the types of continuing therapy. These various therapies will be related to the needs of the patient and assistance with self-care, as well as the patient’s ability to perform other customary daily activities. Are the demands on the caregiver such that they jeopardize his or her health? We also need larger population-based studies so we can have heterogeneous samples related to diagnosis, stage of disease, caregiver distress, care provided, patient impairment, and duration of care as they relate to caregivers’ ability to provide safe care without jeopardizing their own well-being.

Research that uses carefully selected inception cohorts is needed so that variation in care demands can be understood. We will be in a far better position to describe how the course of the disease and associated treatment influence caregivers’ responses if we start with inception cohorts of those caregivers beginning with initial treatment and proceeding through palliative care. Adverse patient care and caregiver situations, such as medication errors, falls, and subsequent hospitalizations, can be noted over time.

We need studies that target caregivers that are from minority and economically disadvantaged groups if we are to better understand their own needs and interventions to support them in providing safe care. Furthermore, focus on variations or adaptations needed to minimize caregiver distress related to ethnic, racial, cultural, or socioeconomic diversity is needed. We know very little about the distress and resource limitations of various vulnerable groups and the acceptability of various types of interventions to ethnically and racially diverse populations.

We need to investigate the interplay between the formal and informal systems of care for the ongoing needs of patients as well as caregivers. More research needs to be conducted that focuses on how family influences care-related decisions and the impact to clinically significant processes of care and/or client outcomes. There is very little research to suggest how variations in caregiver contact with the formal health care system interacts with the amount and types of responsibilities faced by family caregivers. Can prepared caregivers contribute to the quality of patient clinical outcomes as well as patient safety? What does competent and appropriate family care contribute to patient clinical outcomes? How does it affect cost and care utilization?

Future research should identify and test patient- and family-directed interventions and chart their impact upon the quality of care outcomes for patients. In addition, interventions should report the cost of care, as well as the cost of utilization of services. What are the costs of negative outcomes that result when safety and neglect or abuse are involved?

Interventions that can demonstrate improved patient outcomes are particularly essential to building a high-quality system of continuing care. Caregivers who face conflicts in competing demands related to caring for children, spouse, or parent and to maintaining their work roles are particularly threatened by and vulnerable to the demands for continuing home care. More appropriate home care and home care support (resulting in caregivers who are prepared to care and have adequate formal support) may lead to fewer patient or caregiver hospital readmissions, fewer interruptions in treatment cycles, shorter periods of work loss, and better patient and caregiver mental health. Quality of care and patient safety are concerns.

We need to design and test interventions to assist patients and their families to increase their preparedness to deal with the overall care process, to deal with both the direct and indirect care demands. How do we increase their sense of control and mastery of their care situation? Future intervention studies should utilize multidisciplinary, randomized clinical trials (including physicians) to determine the unique contribution of educational programs versus social support versus psychological support on caregiver outcomes and patient outcomes.

Future studies should explore whether health care professionals can assist the caregiver to build effective buffers against being overwhelmed and distressed. Interventions that assist the caregiver to engage in activities that promote their own health should be carried out to identify strategies of health promotion. Research questions should address whether or not caregiver distress (i.e., depression and burden) affects caregiver decisionmaking and judgment about patient care, and to examine caregiver behavior and choices and the subsequent quality of care. Do these have a negative impact on the patient or on themselves?

Examining caregiver distress as it relates to quality of care is absent from the literature. Research is needed to understand the quality of care that family members provide and then determine how that care impacts the overall therapeutic plan and patient clinical outcomes.

Longitudinal studies of caregivers are needed to explore the complex interactions of caregiver physical health and mental health, and how self-care and health-promotion practices of the caregiver are altered. Exploration is needed of which self-care practices (i.e., nutrition, exercise, sleep, stress management, preventive and promotive health care) can influence caregiver distress and physical health status so that caregivers can continue to provide quality and positive care.

To better understand the effects of care on family caregivers and on patient outcomes, caregiver roles, responsibilities, knowledge, and skills need to be more rigorously explored and defined. For instance, what do caregivers do well? What do caregivers not do well? In what areas are the patient outcomes most likely to be compromised? In what areas is patient safety most in jeopardy? What areas cause caregivers more distress? Once these questions are answered, we can target interventions at those who are at risk and intervene early in the care situation, rather than late.

Finally, interventions must recognize professional or formal caregivers and family caregivers as partners in health care—partners who offer unique and vital skills and resources—and engage them in the entire plan of care. Such interventions are critical as we increase the focus on outcomes of care and as providers are paid for outcomes performance. Family members as partners are critical.


Family caregivers are critical partners in the plan of care for patients with chronic illnesses. Nurses should be concerned with several issues that affect patient safety and quality of care as the reliance on family caregiving grows. Improvement can be obtained through communication and caregiver support to strengthen caregiver competency and teach caregivers new skills that will enhance patient safety. Previous interventions and studies have shown improved caregiver outcomes when nurses are involved, but more research is needed. There is more to be learned about the effect of family caregivers on patient outcomes and areas of concern for patient safety. Nurses continue to play an important role in helping family caregivers become more confident and competent providers as they engage in the health care process.

Search Strategy

The research cited is a comprehensive but not exhaustive review of the caregiver literature. The literature search for this paper was done in the databases MEDLINE, CINAHL, and PsycINFO using variations of the terms “caregiver” and “long-term care” or “home care services,” combined with other terms relating to patient safety and nursing practice. Other terms employed included “case management,” “education and training,” “medication,” and “risk management.” The search was limited to articles written in English, but not limited to the United States.

The search terms applied were usually kept very broad, and keyword searches were frequently employed more often than searches that relied upon the use of controlled descriptors, as the topics of patient and caregiver safety, which are often intertwined, are difficult to isolate through clearly defined identifiers. As a result, search results were large, and relevance was frequently determined through the reading and review of abstracts of large sets of retrieved publications. Relevant articles for this review were not always indexed using terms relating to nursing; the potential involvement of the nurse as a contributor to improved patient and caregiver safety was a determinant for inclusion. Some articles discussed the professional health care team in general terms, while others focused on the specific role of a nurse serving as a factor in safe family caregiving. The broad search strategies delivered high retrieval levels and the need to distill relevant evidence.


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