Chapter 14. Supporting Family Caregivers in 

Providing Care 

Susan C. Reinhard, Barbara Given, Nirvana Huhtala Petlick, Ann Bemis 

Background 

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 safety and 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 

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

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 

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Family Caregiving & Caregiver Assessment

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 care professionals in managing 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 

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

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 

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Family Caregiving & Caregiver Assessment

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. 

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

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

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 problemsolving 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. 

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Family Caregiving & Caregiver Assessment

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

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

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

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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, problemsolving, 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 problemsolving 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. 

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

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 communitybased 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 consumerdirected 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 

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Family Caregiving & Caregiver Assessment

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. 

11 
Patient Safety and Quality: An Evidence-Based Handbook for Nurses

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

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Family Caregiving & Caregiver Assessment

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 care for 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 

13 
Patient Safety and Quality: An Evidence-Based Handbook for Nurses

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 

14
Family Caregiving & Caregiver Assessment

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. 

Conclusion 

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. 

15 
Patient Safety and Quality: An Evidence-Based Handbook for Nurses

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. 

Author Affiliations 

Susan C. Reinhard, Ph.D., M.S.N., F.A.A.N. Professor and Co-Director, Center for State 

Health Policy, Rutgers, The State University of New Jersey. E-mail: sreinhard@ifh.rutgers.edu. 

Barbara Given, Ph.D., R.N., F.A.A.N. Professor, Michigan State University College of 

Nursing. E-mail: Barb.Given@ht.msu.edu. 

Nirvana Huhtala Petlick. Research Project Assistant, Center for State Health Policy, Rutgers, 

The State University of New Jersey. E-mail: npetlick@ifh.ruthers.edu. 

Ann Bemis, M.L.S. Research Analyst, Center for State Health Policy, Rutgers, The State 

University of New Jersey. E-mail: annbemis@verizon.net. 

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

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Family Caregiving & Caregiver Assessment

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23 
Evidence Table: Supporting Family Caregivers in Providing Care 

Source Safety Issue Related to Clinical Practice Design Type Study Design and Outcome Measures Study Setting & Study Population Study Intervention Key Acton & Kang 200169 Care burden Meta-analysis Various meta-analysis (Level 1) Effect sizes calculated; studies were grouped by intervention category; pooled effect size calculated for each intervention category (Level 3) 24 reports testing 27 treatments for adults with dementia. Various educational Mu

havon bbureducou

Austrom 2004114 Nonpharmacologic methods, such as this collaborative stepped-care management intervention program, are the intervention of 

choice for behavioral disturbances, which can add to caregiver burden and affect quality of care. 

Randomized controlled trial 

Randomized controlled trial (Level 2). Questionnaires were periodically administered to evaluate frequency of behavioral disturbances in patients as well as a measure of the caregiver’s reaction (Memory and Behavior Problems Checklist), and measure of severity of the caregivers depression (Patient Health Questionaire-9). (Level 3) 

Minority Alzheimer’s patients, who were less likely to visit specialty clinics, may find interventions more accessible if they were delivered through primary care clinics. Intervention of three basic components: (1) comprehensive screening and diagnosis protocol, (2) multidisciplinary team approach to care coordinated by a geriatric nurse practitioner, and (3) proactive longitudinal tracking system. 

All participants receive Alzheimer caregiver guides, educational interventions, and specific protocols for common behavioral disturbances. Treatment group then received treatment recommendations for specific behavioral disturbances from a clinical treatment team of geriatric nurse practitioner, social psychologist, geriatrician, geriatric psychiatrist. 

Studata welcarephyattemornot 

24
Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

25

Related to Clinical Practice 

Outcome Measures Population 

Beach 200563 Threatening 

behavior, verbal abuse 

Convenience sample (descriptive) 

Structured interviews (Level 5) Care recipients reports of harmful caregiver behavior, screaming, yelling swearing, threatening (Level 3) 

265 caregiver/care recipient dyads 

None Har

assorecispocogcaredep

Bowles 2003146 Home care referral 

can lead to better care 

Noncomparative Interviews with content analysis (Level 5) 

Identify patterns clinicians used when gathering information, determine information essential to discharge referral decisions, and explore why patients in need may not be referred for service (Level 3) 

Patients discharged without home care referrals were presented as case studies to nurses, social workers, physicians, and discharge planners. Observations were recorded. 

None Thr

patirefechaand issu

Brodaty 200373 Psychological 

distress in caregivers 

Meta-analysis Meta-analysis (Level 1)

Various psychological morbidity and benefits (Level 3) 

30 studies 34 interventions Sig

carecareimpbur
26

Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

Related to Clinical Practice Outcome Measures Population Brown 2006126 Changing the home care nursing approach from the expert model of service delivery to a more client- centered empowering model can optimize the potential for improved interactions and understandings between the nurse and consumer, and greater professional autonomy for the nurse. Non- comparative (interpretive phenomeno- logical using hermeneutic analysis) Holistic interpretation of nurses' experiences through analysis of interviews (Level 5) Identified concepts were noted and categorized until themes and patterns emerged. Participant review and peer review of findings assured authenticity of data. (Level 4) Purposeful sample consisting of 8 registered nurses who had in-depth experience in the flexible client- driven delivery approach, identified by a key informant within the home care program (Canada). Employed maximum variation sampling regarding age, education, experience in in-home nursing. None Wh

findthis and that pracbarrnurcliesystfina(cenconpersworconnurseek and exewithproEmappsharpoteNurtheiand inte
Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

27

Related to Clinical Practice 

Outcome Measures Population 

Burton 199738 High-level 

caregiving can increase odds of insufficient rest and exercise, and poorer outcomes while recovering from illness or threats to health. 

Crosssectional (descriptive) 

Caregivers compared to noncaregivers (Level 4)Structure interviews in their home (Level 3) 

Health effects study. 434 caregivers with a control matched 385. 

None Bei

incrrestexefrom take com

Cameron 200699

Complex rehabilitation has negative health outcome on caregivers. 

Crosssectional Survey (Level 4) 

Identify aspects of the caregiver’s emotional distress and psychological wellbeing; compare healthrelated quality of life of informal caregivers. Evaluated outcomes by CESD, postaffect scale SF36 (MO5). (Level 3) 

Informal caregivers matched age and gender of ARD survivors. 

None Car

emolifemissurvdepheaage grou
28

Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

Related to Clinical Practice Outcome Measures Population Campbell 2004137 Caregiver strain and burden Cross- sectional (survey description) Descriptive cross- sectional (Level 4) Quality of life, self- efficacy, mood (Level 3) Age mean 57.6, intimate partners of patients with prostate cancer. None Car

assomooCarwerwith anxscorrepoconpaticondepfatiscorassoIncrcareadjuand of t
Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

29

Related to Clinical Practice 

Outcome Measures Population 

Coon 2003115 Anger and 

depression 

Crosssectional Survey (Level 4) 

Anger, depression coping intervention (Level 3) 

Female caregivers age 50+, older community dwelling, 169 females; psycho-educational and skill building, 2-hour workshops for 8 consecutive weeks followed by two booster sessions at 1-month intervals for 3 months. Two options: anger management or depression management, intervention study, R(2/CT) 3-4 months. 

Psycho-educational small group over 3-4 months. 

AngmandecdepeffimancopSelfgroudepmod
30

Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

Related to Clinical Practice Outcome Measures Population Crist 2005123 Understanding how care recipients feel about the care they receive and the level of autonomy that they retain while under care may facilitate better understanding between caregivers and recipients, and result in less anxiety and better relationships. Non- comparative (hermeneutic interpretive phenomeno- logical) Exploration of shared meanings through multiple, open-ended, in-depth interviews, observation (Level 5) 2-5 interviews were conducted with each elder. A 3-member investigator team co- constructed an emergent interpretation of the narratives within the specific context. (Level 4) Convenience sample of 9 elders (5 women, 4 men) in urban and rural areas of the Pacific Northwest, recruited from three home health agencies, one adult day center, one neurological clinic. Elders were 65 or older and had an identified family member who provided assistance with at least one ADL. None Eld

care viewautonurmealeveabilundview indeindeindirelaand persfamreciincocare 
Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

31

Related to Clinical Practice 

Outcome Measures Population 

Christakis 200627

The hospitalization of a spouse with a serious illness may be associated with an increase in the risk of death of a partner. 

Retrospective cohort 

Cohort compiled from data in Medicare claims forms. (Level 4) Two statistical methods were applied (Cox regression and fixedeffects) to estimate the relationship between the hospitalization of a spouse and the subsequent death of the partner, while controlling for all constant characteristics of the spouses and their environment. (Level 1) 

518,240 couples who were enrolled in Medicare in 1993, 65 years of age or older 

None Seri

spoindethe partvaridiffImpassiservcostof pintemorInteusesuch 

Dalton 2005129 Quality of care can 

be improved when client-caregivernurse (triad) communication occurs; caregivers can better understand care plans; coalition decisions within triads may increase the possibility that client interests are maintained. 

Noncomparative (ethnographic, content analysis); exploratory 

Observation, recording, and transcription of triad interactions. (Level 5) Qualitative and quantitative analysis of frequencies of different types of decisions and decisionmaking situations. (Level 4) 

12 client-caregivernurse triads admitted for the first time to home health care agencies in suburban New England during 1994 

None Coa

triadur157 situcoa(5%orgdecdecdec(advpartassuwer
32

Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

Related to Clinical Practice Outcome Measures Population Dalton 2003128 An understanding of triad interaction and how coalitions are formed in clinical settings may enhance the effectiveness of clinicians' communication with clients and family caregivers and facilitate positive client, caregiver, and nurse outcomes. Systematic literature review (theory generation) Literature review (Level 1) Theory generation (Level 4) None None The 

decpracframeffedecnurclie

Davis 200476 Telephone-based psycho-educational interventions may provide relief from the burden, distress, and depression suffered by caregivers who are 

not able to, or do not wish to, seek help from sources that require that they leave their home. 

Three-group pretest and post-test (repeated measures design with randomization to treatment group) 

Each of three groups of caregiver-recipient dyads received 12 weekly sessions of training by in-home contacts; training by telephone contacts; and friendly, socially supportive phone calls. (Level 2) Caregiver self-reported outcome measures: burden, distress, depression, social support, and life satisfaction. (Level 4) 

71 caregiver-care recipient dyads were recruited from geriatric clinics and home care agencies in central Alabama, and were randomized into three groups. 

Caregivers in telephone and in-home groups were trained in problem-solving, caregiver appraisal of behavior problems, written behavioral programs for managing specific problems, and strategies for handling affective responses to difficult caregiving strategies. 

An carewas rececallcallresptraisigncareCardiffcarediffwith grouin s
Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

33

Related to Clinical Practice 

Outcome Measures Population 

Dunnion & Kelly 200524

Improvements in planned discharge strategies (a multidisciplinary approach to developing referral guidelines, staff training, and dissemination of information) of elders from emergency room to home can lead to improved quality and continuity of care for the older person. 

Crosssectional (interviews) of 5 groups of health care professionals 

Standardized questionnaires (Level 3) Quantitative data were analyzed with SPSS, and qualitative data were content analyzed. (Level 4) 

Emergency department in a 320-bed rural general hospital in the Republic of Ireland. Purposeful sample (excluded psychiatric nurses, social workers, physiotherapists) of nursing and medical staff in the emergency room, totaling 222. 135 questionnaires were returned and 131 were analyzed. 

None Fin

othegenin thdo nthe patidiscdiscimpcomhosintediscdelato thphysynand relacomtwo role comchaand Thedevguiddocrefepro
34

Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

Related to Clinical Practice Outcome Measures Population Ferrell 1995106 Pain management can affect quality of life and caregiver burden. Cross- sectional Quasi-experimental (Level 3) Quality of life and caregiver burden; physical and psychological impact of family caregiving and pain management (Level 3) 50 family caregivers of patients experiencing cancer-related pain from two California medical centers Pain education program: pain assessment, pharmacologic interventions, and nonpharmacologic interventions The 

was knoregaPain for intestruimpoutcthei

Fortinsky 2001130 The quality of interaction in the health care triad is likely to influence health-related outcomes of family caregivers, persons with dementia, and primary care physicians. The consequences of 

dementia care communication and practice are most significant when dementia patients are entering or leaving a new health care setting. 

Systematic literature review 

Literature review (Level 1) Summarization of knowledge base (Level 4) 

None None Inte

encdemfrom famphywillmanpatiwith the with phytriaunliactiand diagdem
Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

35

Related to Clinical Practice 

Outcome Measures Population 

Fulmer 2005147 Elder mistreatment 

is an enormous social problem, which emergency departments may help identify. 

Crosssectional Older adults screened and recruited from 

emergency rooms (Level 3) Elder and caregiver cognitive status, functional status, depression level, health status; demographics; perceived social support; childhood support; personality. Relationship between measured variables and neglect-assessment team’s diagnosis of neglect (Level 3) 

165 subjects, 70 years or older, English/Spanish speaking, Mini-Mental Status Exam score of 18 or more, using a paid or unpaid caregiver 20 hours per week or more. Recruited from four urban emergency departments in New York and Tampa. 

None Old

diagsickresoin threlarepoand may by ttraitneg

Gitlin 2001100 Upset family 

caregivers 

Randomized controlled trial 

Intervention RCT (Level 2) Behavioral problems, ADL, IADL, caregiver well-being, selfefficacy, and being upset (Level 4) 

171 families of dementia patients; five 90-minute home visits by occupational therapists

Focusing on education and environmental modification every other week over 3 months; occupational therapists 

Spoupsimpmanwomselffun
36

Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

Related to Clinical Practice Outcome Measures Population Gitlin 200370 Burden among dementia caregiver Meta-analysis Meta-analysis (Level 1) Pooled parameter estimates of nine active conditions compared with six control conditions of the Resources for Enhancing Alzheimer’s Caregiver Research (REACH) project. Associations of caregiver characteristics and outcomes were examined statistically. (Level 3) Homes of patients with dementia, multisite study Consulting education, support, skill building, home visits, problem- solving; 6 months. Act

supcareinteconlowthertechimpbettnon

Gitlin 2005107 Negative behavior in patients with dementia Randomized controlled trial Randomized controlled trial (Level 2) Behavior problem checklist, Says ADL, task management affect (Level 4) 127 caregivers, 6 months Skill building, education, problem- solving, and technical skills. Active—five 90- minute home visits and one phone session over 6 months. 

Maintenance—one home visit and three phone sessions over the next 6 months. 

DecADdiffDecmem6 mmonmonDecbehpati
Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

37

Related to Clinical Practice 

Outcome Measures Population 

Glueckauf 2004116 

Caregivers of persons with dementia typically experience emotional, physical, and psychosocial deterioration due to the extreme demands of providing home care without support. 

Single-group pretest-posttest 

Telephone interviews with caregivers to assess effects of the Positive Caregiving classes (Level 5) Survey instruments for dependent measures were: Steffen et al.'s Caregiver Self-Efficacy scale,148 Parke et al.'s 

Stress-Related Growth Scale,149 Lawton et al.'s 

Caregiver Appraisal Inventory150 (Level 3) 

21 caregivers of individuals with progressive dementia who had completed the AlzOnline's Positive Caregiving program 

Series of six 45-minute interactive (PC- or telephone-based) Positive Caregiving sessions, every 2-3 weeks over a 16-week period 

Moobtaof ACarsigneffideccarechagrocarepercproassi

Grant 2002108 Caregiver 

depression and burden 

Randomized controlled trial 

Randomized 3-group design (Level 2) Social problem-solving (Level 4) 

45 stroke caregivers Problem-solving: (1) 3-

hour home visit with RN, (2) weekly phone calls by RN for 1 month, (3) phone calls by RN every 2 weeks for 1.5 months. 

ImpskilsochearelaprobNo bur
38

Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

Related to Clinical Practice Outcome Measures Population Greenberger & Litwin 2003124 Caregiver burden "is liable to diminish the caregiver's ability to provide quality care." Cross- sectional (interviews) Structured in-home interview schedule (Level 3) Variables measured: background, personal and social resources, burden measures, feelings of caregiver competence, adherence facilitation, measured with multiple instruments (Level 3) 240 Jewish primary informal caregivers, randomly recruited using records of recently discharged dependent older patients, caring for recipients over the age of 65, who lacked at least one functional ability delineated by ADLs or assessing motor functions necessary for independence in IADLs, and with at least one chronic illness. None (interaction only) Ope

care presinfoposcareadhbursuccarebolsand morquareli
Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

39

Related to Clinical Practice 

Outcome Measures Population 

Griffiths 2004109

Persons over 65 years old represent a significant percentage of medication-related admissions to hospitals. Community nurses can play a role in managing the administration of medicines and the monitoring of their effects on patients. Community nurses can play a unique role in the "medication team" (i.e., doctors, pharmacists, nurses, consumers) in a multidisciplinary approach to quality use of medicines. 

Pretest-posttest with a crosssectional survey 

Survey (Level 3) Participants living at home and receiving community nursing care were assessed for knowledge of and ability to manage medication regimes. A nurse-initiated intervention was developed that included referral pathways to physicians and/or pharmacist medication review. (Level 3) 

111 participants over age 65, taking oral medications and having regular community nursing visits, were surveyed. Recruited from case-load of Australian community nurses. A subgroup of 24 participants with diminished knowledge of medications were administered a followup in-depth survey. 

Various interventions, including client education, referral paths to physicians and pharmacists, provision of administrative support systems. 

Aftshoabil(altcomdemknomedsignthe theischdid in thregican the mulprotheiprac
40

Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

Related to Clinical Practice Outcome Measures Population Hallberg & Kristensson 2004141 Preventive case/care management interventions for community- dwelling frail older people may result in better quality of life, fewer emergency medical calls, and a reduction in hospital admissions. Systematic literature review Systematic review (Level 1) Three areas of outcome were targeted, though not at the same time: health care consumption, in some cases transformed into costs; quality of care; and patient's health and ability. (Level 4) A literature review produced 26 papers that related to the topic. Articles discussing a particular group of diseases were excluded, as the focus was on the needs of frail older people with complex needs. Criterion for inclusion of older people in the programs was either having a chronic disease combined with receiving care from at least two professionals or nonprofessional caregivers and living independently in the community. Case management interventions included traditional tasks (case finding, assessing, planning, implementation, coordination and monitoring, and evaluation of options); comprehensive (outreach, client assessment, advocacy, etc.); extensive (medication and symptom management, caregiver and family supportive counseling). Cas

rangcore taskpara(intberedepsitumanstudoutcmanexpmorrehaorieNurgerokey for as ca gediffmanstannot prevrehapsyinteselfprevmaninvoabil
Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

41

Related to Clinical Practice 

Outcome Measures Population 

Heath 2005151 Assessment of 

prevalence of remediable health conditions from inhome geriatric assessments of referred adult protective services. Elder mistreatment has a significant impact on mortality of victims. 

Retrospective cohort study 

Assessments were conducted with referred elders by a nursepractitioner-geriatric physician team, including a detailed medical and functional history, physical exam. (Level 5) Classifications of mistreatment (neglect, financial exploitation, abuse) were employed from the NJ State Dept. of Health and Senior Services as independent variables. Descriptive statistical analysis. (Level 3) 

211 adult protective services referred to the Linking Geriatrics With Adult Protective Services program in central New Jersey. 

None The 

amoconnativarimisdemalso founpop
42

Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

Related to Clinical Practice Outcome Measures Population Hellstrom 2004152 While health problems can reduce quality of life (QoL), dependency on others may also influence how people perceive their QoL. Understanding how living with health- related assistance at home affects peoples' lives can inform what nursing care should focus upon. Cross- sectional (survey) Survey (Level 3) Comparison of people 75 years and older, living at home and receiving help with daily living, with those without such help, with regard to sociodemographic data, self-reported illness, health problems, and QoL (Level 3) 1248 subjects (448 receiving help; 793 not receiving help; age stratified randomized sample) responded to a mailed survey in a southern Swedish municipality. None Alth

headetespeconQoLespon tcarelivireceprobchaabolifeassesymimpindineeand nurare are resolivin

Heinrich 200325 Support to 

caregivers of dementia patients; guidance from health personnel. 

Noncomparative Secondary analysis interviews (Level 4) 

Interview focus groups analysis (Level 3) 

Interviews of 20 women who were caregivers and new data from 8 volunteers; 62 interviews total for analyses. 

None Wa

decpartempresoexpStru
Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

43

Related to Clinical Practice 

Outcome Measures Population 

Hepburn 2003117

Caregiver wellbeing, burden, emotional enmeshment

Changing practice projects 

Training program descriptive field study (Level 6) Well-being, burden, goal setting. Burden CESD competence. (Level 4) 

140 caregivers, 40% spouses, 47% adult, children 

Manual, CD-ROM, workshops for caregivers 

Impcareemochaincrcon

Houts 199681 Establishment of a 

prescriptive problem-solving model for family members who care for patients at home can help caregivers develop and carry out orderly plans that address both medical and psychosocial problems and coordinate with care plans of health professionals. 

Published guidelines 

Proposal of a model for problem-solving in caregiving (Level 6) No outcome measures (Level 4) 

None None The 

to bthey memteamedutrai

Jang 200473 Depression 

diminishes response to helping patient. 

Randomized controlled trial 

Spouse caregiver, AD patients, RCT (Level 2)Counseling, neuroticism, depression (Level 3) 

160 in each group; caregivers, spouses caring for patient with dementia 

Enhanced psychosocial care or usual care. Comprehensive, counseling sessions, counseling support and consultation (2), and family (4) sessions, then weekly groups 4 months later with ad hoc individual sessions as needed—usual care group. 

Carresplevecareneubas
44

Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

Related to Clinical Practice Outcome Measures Population Kozachik 2001112 With a shift to outpatient cancer care and increased responsibilities placed on family members, a greater potential exists for depressive symptoms to arise in a family caregiver. Randomized controlled trial Convenience sampling. Control dyads and experimental group that received Cancer Care intervention. (Level 2) Equivalence of groups at baseline; comparison of caregiver depression; impact of patient depression, patient symptoms, caregiver exposure to supportive nursing intervention on caregiver depression (Level 1) 120 caregiver/patient dyads. Caregivers of newly diagnosed cancer patients. Patients were from two Midwestern cancer treatment sites. Nursing intervention of symptom monitoring/ management, education, emotional support, coordination of services, caregiver preparation to care. Bas

and symsigncare24 weffecondeprelabetwintescor
Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

45

Related to Clinical Practice 

Outcome Measures Population 

Kurtz 199426 Depression, health 

impact. 

Crosssectional studies 

Descriptive interviews (Level 4) Issues addressed most frequently occurring symptoms, levels of symptom severity, immobility, dependences in ADLs, and depression variance. (Level 3) 

Family caregiver experiences at different stages of patient illness, mean age 55, N = 208. Followed for 12 months. 

None Fam

depimpassicorrall pcarewerpercschdepwas careschinvopatimirpropatiincrfamdurillnemofamocc
46

Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

Related to Clinical Practice Outcome Measures Population Mahoney 200375 Caregiver bother and depression anxiety Randomized controlled trial Multisite randomized trial (Level 2) Bother, anxiety, depression mastery (Level 4) 100 AD caregivers, 50 in usual care and 49 in technology group Year-long access to an automated interactive voice response system. Provided stress monitoring, counseling system, voice mail links to AD experts, voice mail telephone support group, and a distraction call for care recipients. Imp

and lowImpfor anxBen

McCurry 200582 Caregiver sleep Randomized controlled trials (for caregiver) Randomized trial (Level 2) 36 Community Developing CESD, Cornell Depression Scale. Problem checklist - Pittsburg Sleep Index (Level 3) 36 dyads who had a sleep problem Sleep hygiene, daily walking, daily light exposure (over 3 weeks), written materials, principles of sleep hygiene, control group, general instructions Imp

and wakposacticontim

McMillan 200683 Mastery burden Randomized controlled 

trial threegroup design 

Randomized controlled trial (Level 2) Coping burden mastery (Level 3) 

354 family caregivers with patients with terminal cancer. Three interventions: (1) standard hospice care, (2) hospice care plus three supportive visits, (3) hospice care plus problem-solving training

Coping skills Imp

Impredu
Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

47

Related to Clinical Practice 

Outcome Measures Population 

Mailey 2002153 The nurse's role of 

educating client's about their health care is an important component of quality care and can be key to successfully coping with a disastrous event. 

Changing practice projects/ research 

Theory application (Level 6) Neal Theory of Home Health Nursing (Level 4) 

None None Aft

Neamodautonurproresochemen(and careeffe

Miller 200685 Caregivers’ 

harmful behavior toward patients 

Noncomparative Descriptive (Level 5). 

Onetime measures; amount of care provided CO, depression (Level 3) 

180 caregiver-care recipient dyads. 

None Com

statprobcare

Mittelman 200488 

Prevent negative responses to patients’ troublesome behaviors 

Randomized controlled trial 

Randomized controlled trial (Level 2) Problem behavior checklist (Level 3) 

406 spouses, caregivers. 

Counseling and support and usual care counseling for 4 months, then support groups and ad hoc counseling. 

Carove4. R
48

Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

Related to Clinical Practice Outcome Measures Population Mittelman 200489 Fewer depressive symptoms Randomized controlled trial Randomized controlled trial (Level 2) Geriatric depression scale (Level 3) 406 spouses, caregivers of dementia patients. Counseling sessions; individual (2) and family (4) sessions, then weekly groups 4 months later with ad hoc individual sessions as needed. No 

4 mdiffup t

Metlay 200590 In the outpatient setting, patients and their caregivers play a critical role in ensuring the safe use of medical therapies. Knowledge of the causes of medication errors can inform the design of medication-taking interventions. Cross- sectional Prospective cohort study (Level 4) Telephone interviews. Demographic characteristics of survey participants were compared to characteristics of nonparticipants in the PACE program. Five groups were identified for sampling by medication use. Interview responses to specific medication 

information and medication organization questions were compared across drug categories using chisquare tests (Level 3). 

4,955 Pennsylvania Pharmacy Assistance Contract for the Elderly (PACE) members (65 years and older) who were taking warfarin, digoxin, and phenytoin (half of whom lived home alone) 

None Alm

repoinstmed40% systmedsubadumedreceuse do nexisorgregi
Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

49

Related to Clinical Practice 

Outcome Measures Population 

Naylor 2000154 Identification of 

problems experienced by elders who were hospitalized and discharged to home. 

Noncomparative Content analysis of patient records by 

advanced practice nurses (Level 5) Problems encountered by discharged elders, interventions used by advanced practice nurses with patients, linkages between patient problems and advanced practice nurse interventions (Level 3) 

Sample records obtained from 124 intervention group patients in a large randomized clinical trial. 

None Mo

wernatubehintegrouprobdisc

Naylor 2000155 An effective 

hospital discharge process can contribute to reduced costs and more positive care outcomes for caregivers and their patients at home. 

Systematic literature review 

Systematic review (Level 1) Development of a transitional care model (Level 6) 

None None Thi

incrthe modversconeldeoutccareneeconpracthesdechom
50

Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

Related to Clinical Practice Outcome Measures Population Naylor 2004156 Patients and caregivers report substantial numbers of unmet needs resulting from inadequate discharge procedures. Randomized controlled trial Two randomized groups (Level 2) Time to first rehospitalization or death, number of rehospitalizations, quality of life, functional status, costs, satisfaction with care (Level 3) Six Philadelphia academic and community hospitals. 239 patients ages 65 and older and hospitalized with heart failure. 3-month advanced practice nurse-directed discharge planning and home followup protocol. Tim

deainteinteshowerquadimand 
Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

51

Related to Clinical Practice 

Outcome Measures Population 

Ohman 2004127 Establishment of a 

close relationship between district nurses and people with serious chronic illness and their close relatives can increase the health personnel's possibility to alleviate and console those suffering illness, and can be useful for reflection of care interventions, in education and supervision of district nurses. 

Noncomparative Phenomenological hermeneutic (Level 5) 

Interviews with a narrative approach; interpretation of text in three phases: naïve understanding, structural analysis, interpretation of the text as a whole (Level 3) 

Sweden. Purposive sample of 10 female district nurses, between ages 50 and 62 with work experience of 2–20 years. 

None The 

nurencseritheican beinpersintiundis ebeinsharweaListfor supcom(intlangcomfuncomshardiffclosesta
52

Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

Related to Clinical Practice Outcome Measures Population Pot 2005157 Elders receiving professional long- term care (vs. informal or no care) may experience increased stress and increased risk of depressive symptoms. Time series (longitudinal) Part of the Longitudinal Aging Study Amsterdam. Linear regression analysis (generalized estimating equations). (Level 4) Survey data gathered in 3,107 face-to-face interviews in respondents' homes, with followup interviews after 3 and 6 additional years. Independent variables used to evaluate the dependent variable of depression were (a) from no or informal care to professional home care, (b) from no or informal care to institutional care, (c) 

continuing professional home or institutional care, (d) from institutional or professional home care to no or informal care. (Level 3) 

The Netherlands. Random, nationally representative age- and gender-stratified sample of adults 55–85 years old. 

None The

betwutilsymbetwproin dOldto pconsymthosproadutrancare onlychasym
Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

53

Related to Clinical Practice 

Outcome Measures Population 

Rose 200017 Combined 

knowledge of family caregivers and staff nurses can foster comprehensive and appropriate posthospital care. 

Open-ended interviews 

with content analysis (Level 5) Nurses’ perceptions of patients and family caregivers, family caregiver’s perception of patients and themselves near admission and discharge from hospital (Level 4) 

37 caregivers and 37 nurses who were present for discharge but not admission of patient. 

None Sug

betwfamissuolde

Roth 200577 Caregiver 

depression 

Randomized controlled trial 

Randomized controlled trial (Level 2) Geriatric depression, satisfaction with social support (Level 3) 

406 spouses, caregivers of dementia patients 

Individual and family counseling; five 90-minute home visits focusing on education and environmental modification every other week over 3 months. Enhanced social support. 

Impperssupperscaresatisupsignintecare

Schulz & Beach 199921 

Caregiving as a risk factor for mortality 

Perspective population cohort study with 4.5 years of followup 

Survey (Level 4) Morbidity, caregiver strain (Level 3) 

Population based, community based 

None Car

proexp63% nonMena riamocare
54

Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

Related to Clinical Practice Outcome Measures Population Schulz & Beach 199921 Death of caregiver spouses Prospective cohort Survey. Prospective population-based cohort study with 4–5 year followup. (Level 4) Mortality, caregiver strain (Level 2) 392 caregivers and 427 noncaregivers, ages 66– 96 living with spouses None Ask

expaftepartwho mornoncarenot rate

Schumacher 1998158 Identification of concepts related to doing family caregiving well. Systematic literature review Systematic review (Level 1) Concepts organized into those referring to caregivers perceptions of how well they provide care and those that refer to professional assessment of the quality of care (Level 4) None None Tw

addare doinchacare

Silver 2004159 Core competence 

and care effectiveness 

Noncomparative Descriptive study (Level 5) 

Caregiver competence and effectiveness (Level 3) 

Interviews of 30 family caregivers during first 3 months 

None Car

aveThe care techtaskcareassotrainrate
Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

55

Related to Clinical Practice 

Outcome Measures Population 

Sit 2004143 Family caregivers 

of stroke patients often do not have the requisite knowledge and skills to provide the extensive care needs of stroke survivors. The demands and stress of caring for the family member can result in the caregiver becoming a "second patient." 

Crosssectional (descriptive) 

Family caregivers participated in face-toface interviews 12 weeks after starting stroke caregiving role at home (Level 5). Interview guide consisted of four sections: demographics, assessment of stroke survivor's current health status, assessment of social support for the subject, caregiver's general health. Regression analysis applied to responses to open-ended questions (Level 3) 

Hong Kong. 102 Mandarin or Cantonese-speaking subjects obtained from four rehabilitation hospitals with established stroke rehab units. 

None Aft

the somfatineeUnmwersupof efinainfoinclrelastrunetwsuphavcareare advoffesupcare boumobin thnetw“cresupof texisperi
56

Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

Related to Clinical Practice Outcome Measures Population Smeenk 1998160 Patients with complex health care problems being cared for at home are often cared for by numerous professional caregivers. These caregivers may be providing “parallel” vs. “coherent” care, due to communication gaps, which can result in inadequate care for the patient. Cross- sectional Direct and professional caregivers of eligible subjects generated reports (Level 3) Costs and time spent providing care was recorded. Professional and direct caregivers completed a questionnaire after patient’s demise, asking opinions on various aspects of intervention. (Level 5) Terminal cancer patients in the Netherlands. Patients were followed until demise. Transmural home care intervention program: a specialist nurse coordinator managed discharge from hospital and organized home care; 24-hour phone consultation; dossier maintained at home for various caregivers; specific care protocols established. Pati

proshonurhouimpintespecooconfamseen 
Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

57

Related to Clinical Practice 

Outcome Measures Population 

Sorensen 200272

Family caregivers of elderly persons with physical ailments and/or dementing illnesses often experience high levels of stress, which can lead to a lowered sense of wellbeing, feelings of being burdened, depression, compromised physical health, and even premature mortality. 

Meta-analysis A comprehensive 

literature review and the "ancestry method" (Level 1) Identified 78 eligible studies. Outcome measures were caregiver burden, selfrated depression, subjective well-being, uplifts, ability and knowledge, care receiver outcomes. (Level 4) 

For eligible studies: number of intervention sessions ranged from 1 to 180; followups were conducted in 22% of cases; number of participants in the experimental intervention condition ranged from 4–2,268; mean age of caregiver was 62.3; caregivers had been providing care for an average of 4 years with 30 hours/week of care; most studies were conducted with heterogeneous disabilities samples; 60 studies were in North America, 11 in Europe, 7 in Australia. 

Psycho-educational, supportive, respite/adult day care, psychotherapy, improvement of care receiver competence, multicomponent 

IntesucburincrwelcareThe persmonProinteand of teffecareshointeeffecareintemorcare 
58

Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

Related to Clinical Practice Outcome Measures Population Steffen 200057 Anger and hostility experienced by caregivers can impact psychosocial functioning. Randomized controlled trial Interviews of three groups: wait-list comparison, home- based viewing with weekly phone session, class-based viewing (Level 2) Demographics, self- reported anger intensity, depression, caregiving self- efficacy, telephone contacts (Level 3) 33 caregivers of Alzheimer’s patients or other dementing disorder. Recruited through various methods. Provide 5 hours weekly of face- to-face direct care. 8-week psycho- educational video series for anger management, workbook. Fam

benmanbasprin

Teng 2003162 Early supported discharge programs may decrease hospital costs without having a negative effect on patient outcomes. Randomized controlled trial Two groups randomized to home intervention or usual care (Level 2) Interviews ascertained self-rated physical health; costs estimated 

for acute-care hospitalization, outpatient care, and inhome care; caregiver stress (Level 3) 

Stroke patients who required rehabilitation services and had a caregiver at home. 

4-week, tailor-made home program of rehabilitation and nursing services. 

Prono mfor funthosthe grouBurwith 
Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

59

Related to Clinical Practice 

Outcome Measures Population 

Toseland 2004118

Health education programs can help caregivers reduce depression, increase knowledge of community services and how to access them, change caregivers feelings of competence and how they respond to the caregiver situation. 

Randomized controlled trial 

Two-level randomized controlled trial (Level 2) General Health Questionnaire, Medical Outcome Short Form Health Survey, Social Provisions Scale, psychological wellbeing, perceived social support, subjective burden (Level 3) 

Caregivers of spouse with chronic illness who was a member of a staff model HMO. Minimum score of 7 on Caregiver Strain Index. Care recipients with at least two impairments in ADLs. Total of 105 caregiver-care recipient dyads. 

Multicomponent psycho-educational health education program. Consisted of 8 weekly sessions, followed by 10 monthly sessions. 

Carend heahelpcomhow 

Travis 200012 Improving 

understanding of how family caregivers deliver complex care can result in better care. 

Noncomparative Semistructured, face-to- face interviews (Level 

5) Content analysis to capture the shared and idiosyncratic experiences of individuals responsible for all aspects of medication administration. Three categories of

medication administration hassles were identified: scheduling logistics, administrationprocedures, and safety issues. (Level 3) 

23 family caregivers providing 122 separate accounts. 

None Prim

con

simfor 

in thmemcare

adeto o

supperfmed

resp
60

Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

Related to Clinical Practice Outcome Measures Population Visser-Meily 200574 Identification of effectiveness of different types of intervention programs for caregivers of stroke patients. Systematic literature review Systematic review (Level 1) Four types of support groups identified: providing specialist services, psycho- educational, counseling, and social support by peers; various outcome measures (reduction of depression and burden, improvement of knowledge, satisfaction with care, family functioning, quality of life) (Level 5) 22 studies, a critical review None Cou

evidefficouapppos
Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

61

Related to Clinical Practice 

Outcome Measures Population 

Ward-Griffin & McKeever 2000140 

Quality of care delivered by informal caregiver, contingent upon communication and relationship with nurse 

Crosssectional Critical ethnography— socialist-feminist 

perspective (Level 5) 38 in-depth focused interviews (average 75 min. in length) from 23 family caregiver-nurse dyads; data analysis through use of NUD*IST software (Level 3) 

Dyads were acquainted 3 months–14 years; sample drawn from three nonprofit, publicly funded community nursing agencies in southwestern Ontario. Average age of nurses was 47 years (one male only); family caregivers’ age was 33–82 years (all female); elder care recipients’ age was 65–99 years. 

None (interaction only) Rel

and appnatuhumcaremorreciwerresominrecicomformcarecoacollreso"trabroecocare equcare
62

Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

Related to Clinical Practice Outcome Measures Population Weuve 2000139 Outpatient geriatric evaluation and management (GEM) may alleviate caregiver burden, e.g., physical, psychological, social, and economic distress. Randomized controlled study Randomized controlled trial (Level 2) Assessed caregiver burden by telephone interview survey, using a Likert scale. Statistical analysis used to compare burden scores of control and treatment group. (Level 3) 568 high-risk older adults living in the community who were fee-for-service Medicare beneficiaries age 70 or older living in or near Ramsey County, Minnesota. Participants in the control group received all health care from their usual providers; GEM participants were assigned to one of three clinical teams, each composed of a geriatrician, a nurse, a social worker, and a gerontological nurse practitioner for 6 months. GEM participants (outpatient) received counseling from the team until it was determined that the participant had attained GEM goals or was adhering to a comprehensive plan of care. Caregivers were assessed for burden at 

baseline and 1 year later. Caregivers did not receive a standard intervention, although they received resource referrals. 

GEwerDurperiGEto dof cor dAssassothe devin sCarexprelatendGE
Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

63

Related to Clinical Practice 

Outcome Measures Population 

Williamson & Shaffer 2001163

Potentially harmful behaviors to patients 

Noncomparative Descriptive interviews (Level 5) 

Caregiver depression (Level 3) 

142 caregivers—98 wives, 44 husbands— interviewed 

None Dep

morhurrelarelarewand 

Zarit 199879 Family caregivers 

of dementia patients can suffer overwhelming and uncontrollable stress that can take a toll on emotional health and wellbeing. Programs can be developed to relieve these negative effects. 

Nonrandomized trials 

Quasi-experimental comparing two groups of primary family caregivers who enrolled relatives in adult day care (Level 3) Caregivers were interviewed at three intervals over 1 year. 

Treatment group comprised of caregivers in New Jersey with relatives enrolled in day care; control group was from another state and relatives were not in day care. 

Caregivers in treatment group used substantial amounts of day care services. 

Use carepatiof cand beinof c

Zarit 1986164 Caregiver burden 

can affect quality of life and decisions to institutionalize. 

Time series Interviews (Level 5) 

Caregiver burden, severity of impairment, social support, quality of relationship, placement decision factors (Level 3) 

64 caregivers for a spouse with senile dementia, recruited from a clinic offering counseling and support to caregivers, and membership lists from an Alzheimer’s disease advocacy group. 

None Sev

symdiffplacwho 
64

Source Safety Issue Design Type Study Design and Study Setting & Study Study Intervention Key 

Related to Clinical Practice Outcome Measures Population Zwygart- Stauffacher 2000134 It appears that there is a discrepancy between the perceived needs of stroke survivors and their caregivers and those of health professionals. Stroke survivors' and caregivers' perspectives as to their needs are critical if professionals are to identify unmet needs and deliver health care that is truly high quality and client centered. Cross- sectional Phase I: Twelve focus group and individual interviews, with 47 stroke survivors, caregivers, and professionals from the community (Level 5) Asked caregiver to rate importance of needs and degree to which need had been met. Factor analysis done on needs of survivors and caregivers. (Level 3) 281 stroke survivors and 223 caregivers completed the mailed survey. None For 

survratewas Botidencleamedtreatimansnurdiscfaciof csettproinfoexpverb