Evidence Table

Supporting Family Caregivers in Providing Care

SourceSafety Issue Related to Clinical PracticeDesign TypeStudy Design and Outcome MeasuresStudy Setting & Study PopulationStudy InterventionKey Finding(s)
Acton & Kang 200169Care burdenMeta-analysisVarious 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 educationalMulticomponent interventions have a small significant effect on burden. No effect on burden from support group, education, psycho-education, counseling, and respite.
Austrom 2004114Nonpharmacologic 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 trialRandomized 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.Study is ongoing. Preliminary data indicate that program is well received by patients, caregivers, and primary care physicians. Subjects are attending voluntary meetings more frequently than those not in the program.
Beach 200563Threatening behavior, verbal abuseConvenience sample (descriptive)Structured interviews (Level 5)

Care recipients reports of harmful caregiver behavior, screaming, yelling swearing, threatening (Level 3)
265 caregiver/care recipient dyadsNoneHarmful caregivers were associated with greater recipient ADL needs; spouse’s greater caregiver cognitive physical symptoms; caregiver at risk for clinical depression.
Bowles 2003146Home care referral can lead to better careNoncompara tiveInterviews 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.NoneThree themes describe why patients may not receive referrals: (1) patient characteristics, (2) workload, and (3) staffing, educational issues.
Brodaty 200373Psychological distress in caregiversMeta-analysisMeta-analysis (Level 1)

Various psychological morbidity and benefits (Level 3)
30 studies34 interventionsSignificant improvement in caregiver distress and caregiver knowledge. No improvement in caregiver burden.
Brown 2006126Changing 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.Noncomparative (interpretive phenomenological 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.NoneWhile interpretive research findings are not generalizable, this study identified pitfalls and suggests potential ways that nurses can implement practice change. Several barriers exist that impede nurses from evolving to a client-centered service model: system level (governmental financial), organizational (centralized allocation and control of service delivery), personal (remuneration, workload, working conditions). Home care nurses revealed a tendency to seek direction of physicians and managers rather than to exert professional autonomy within the scope of professional nursing practice. Empowering partnering approaches in nursing fosters sharing power to optimize the potential for nurse and client. Nurses may have to reframe their professional image, role, and values to enact this interaction.
Burton 199738High-level caregiving can increase odds of insufficient rest and exercise, and poorer outcomes while recovering from illness or threats to health.Cross- sectional (descriptive)Caregivers compared to noncaregivers (Level 4)

Structure interviews in their home (Level 3)
Health effects study. 434 caregivers with a control matched 385.NoneBeing a high-level caregiver increased odds of not getting rest, not having time to exercise, and not recuperating from illness and forgetting to take prescription meds when compared to noncaregivers.
Cameron 200699Complex rehabilitation has negative health outcome on caregivers.Cross- sectionalSurvey (Level 4)

Identify aspects of the caregiver’s emotional distress and psychological well- being; compare health- related 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.NoneCaregivers had more emotional distress, more lifestyle interference, lower misery. Caring for ARD survivors with more depression, poorer overall health quality compared to age and gender matched group lasted 2 years.
Campbell 2004137Caregiver strain and burdenCross- 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.NoneCaregiver self-efficacy was associated with both partner mood and caregiver strain. Caregiver self-efficacy scores were negatively correlated with partner depression, anxiety, and fatigue subscale scores since partners who reported greater overall confidence in assisting patients with symptom control also reported less depression, anxiety, and fatigue. The total self-efficacy score was negatively associated with strain. Increased self-efficacy in the caregiver led to better adjustment to the symptoms and increased mental health of the patient.
Coon 2003115Anger and depressionCross- sectionalSurvey (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.Anger and depression management interventions decreased anger, hostility, and depression and improved self- efficacy at 3 months. Anger management improved coping skills. RCT, effective. Self-efficacy impaired in both groups. Pretreatment depressive symptoms moderated intervention.
Crist 2005123Understanding 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 phenomenological)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.NoneElders can incorporate family care into their lives while still viewing themselves as autonomous. Gerontological nurses, who traditionally measure independence as the level of a client’s functional ability, may shift to understand the recipient’s view of autonomy and independence is constructed independently and individually. Positive relationships between elders and caregivers resulted in personal growth; a positive family care context facilitated recipients’ willingness to incorporate receiving family care into their lives.
Christakis 200627The hospitalization of a spouse with a serious illness may be associated with an increase in the risk of death of a partner.Retrospective cohortCohort compiled from data in Medicare claims forms. (Level 4)

Two statistical methods were applied (Cox regression and fixed- effects) 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 olderNoneSerious spousal illness and spousal death appear to be independently associated with the risk of death of the partner. Hospitalization for various diseases may differentially affect partners. Implications: training and assistance of spouses who serve as caregivers can lower costs and improve the health of patients and partners. Such interventions might decrease mortality among partners. Interventions may be more useful in certain diseases, such as stroke or dementia.
Dalton 2005129Quality of care can be improved when client-caregiver- nurse (triad) communication occurs; caregivers can better understand care plans; coalition decisions within triads may increase the possibility that client interests are maintained.Non- comparative (ethnographic, content analysis); exploratoryObservation, 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-caregiver- nurse triads admitted for the first time to home health care agencies in suburban New England during 1994NoneCoalitions (two members of a triad acting together) form during triadic interactions; of 157 decisionmaking situations evaluated, coalitions formed in just 8 (5%). Decisions were organized into program decisions, operational decisions, and agenda decisions. Two of the roles (advocate and passive participant) that can be assumed by a third person were evident.
Dalton 2003128An 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)
NoneNoneThe theory of collaborative decision-making in nursing practice for a triad provides a framework for studying the effects of collaborative decision-making among nurses, family caregivers, and clients.
Davis 200476Telephone-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 unexpected reduction in caregiver burden and distress was observed in those receiving only friendly phone calls, possibly because the calls provided caregiver respite. Only the in-home training group experienced significant burden and caregiver distress reduction. Caregiver groups did not differ significantly on caregiver depression. Despite differences in contact time with the three different groups, they were all similar in satisfaction levels.
Dunnion & Kelly 200524Improvements 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.Cross- sectional (interviews) of 5 groups of health care professionalsStandardized 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.NoneFindings added support to others that found that in general, health professionals in the emergency department do not adequately determine the aftercare 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 general practice physician. There is a lack of synchrony between hospital and community nurses in relation to the level of communication between the two sectors. The liaison nurse role may help to improve communication links and channels between the primary and secondary interface. There is a clear need to develop referral criteria and guidelines, accurate documentation, and prompt referral to continuing care professionals.
Ferrell 1995106Pain management can affect quality of life and caregiver burden.Cross- sectionalQuasi-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 centersPain education program: pain assessment, pharmacologic interventions, and nonpharmacologic interventionsThe pain education program was effective in improving knowledge and attitudes regarding pain management. Pain management is a priority for nurses, and use of interventions such as structured pain education improves quality-of-life outcomes for patients and their caregivers.
Fortinsky 2001130The 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 reviewLiterature review (Level 1)

Summarization of knowledge base (Level 4)
NoneNoneInteractions in medical encounters involving dementia care are not optimal from the perspectives of family caregivers or physicians. Physicians are willing to share ongoing management of dementia patients and their families with other organizations in the community. Older persons with dementia, even though physically present during triadic encounters, are unlikely to be involved as active participants in dialogs and decisionmaking regarding diagnosis and management of dementia symptoms.
Fulmer 2005147Elder mistreatment is an enormous social problem, which emergency departments may help identify.Cross- sectionalOlder 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.NoneOlder adults who are diagnosed as neglected are sicker, have fewer financial resources, and have less help in the home. There is a relationship between self- reported childhood trauma and later-life neglect, which may be considered normative by these elders. Personality traits may be indicators of neglect.
Gitlin 2001100Upset family caregiversRandomized controlled trialIntervention RCT (Level 2)

Behavioral problems, ADL, IADL, caregiver well-being, self- efficacy, and being upset (Level 4)
171 families of dementia patients; five 90-minute home visits by occupational therapistsFocusing on education and environmental modification every other week over 3 months; occupational therapistsSpouses reported reduced upset; women reported improved self-efficacy in managing behaviors; minority women reported improved self-efficacy in managing functional dependency.
Gitlin 200370Burden among dementia caregiverMeta-analysisMeta-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 studyConsulting education, support, skill building, home visits, problem- solving; 6 months.Active interventions are superior to control on caregiver burden. Active interventions superior to control for women, those with lower education. Family therapy and computer technology intervention impacted depression. Active better for Hispanics, nonspouses.
Gitlin 2005107Negative behavior in patients with dementiaRandomized controlled trialRandomized controlled trial (Level 2)

Behavior problem checklist, Says ADL, task management affect (Level 4)
127 caregivers, 6 monthsSkill 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.Decreased days assisting with ADLs at 6 months, no difference at 12 months. Decreased upset with memory-related behaviors at 6 months, no difference at 12 months. Improved affect at 6 months, none at 12 months. Decreased memory behavioral occurrences in patients at 6 and 12 months.
Glueckauf 2004116Caregivers 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-post- testTelephone 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 programSeries of six 45-minute interactive (PC- or telephone-based) Positive Caregiving sessions, every 2–3 weeks over a 16-week periodModerate support was obtained for the effectiveness of AlzOnline’s Positive Caregiving classes; significant increases in self- efficacy, concomitant decreases in subjective caregiving burden, little or no change in stress-related growth and positive caregiving appraisals, or perceptions of time burden in providing caregiving assistance.
Grant 2002108Caregiver depression and burdenRandomized controlled trialRandomized 3-group design (Level 2)

Social problem-solving (Level 4)
45 stroke caregiversProblem-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.Improved problem-solving skills, preparedness, vitality, social functioning, mental health, and role limitations related to emotional problems. Less depression. No significant difference in burden.
Greenberger & Litwin 2003124Caregiver 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)Operationalizes facilitation of care recipients’ adherence to prescribed care regimens in informal caregiving. Shows positive association between caregiver burden and adherence facilitation; burdened caregivers can be successful informal caregivers; and efforts to bolster caregivers’ self-esteem and social support may be more effective in assuring quality care than attempts to relieve their sense of burden.
Griffiths 2004109Persons 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-post- test with a cross- sectional surveySurvey (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.After invention, participants showed improvement in their ability to manage medications (alteration in use of compliance aids) and demonstrated increased knowledge about their medications. Clients showed significant improvement in the ability to correctly name their medications and schedules correctly; clients did not experience reduction in the complexity of the regimes. Community nurses can successfully work within the boundaries of a multidisciplinary team to provide interventions within their professional scope of practice.
Hallberg & Kristensson 2004141Preventive 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 reviewSystematic 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).Case management includes a range of interventions, but the core of the intervention is a task-focused approach, with parallel functions added (interagency coordination, bereavement counseling) depending on the individual’s situation. The effect of case management interventions studied showed a range of outcomes. The content of case management needs to be expanded and influenced more by a salutogenic, rehabilitative, and family- oriented health care approach. Nurses, preferably trained in gerontological nursing, have a key role in case management for frail older people. Nurses as case managers, along with a geriatric team, can solve difficult problems. Case management has not been standardized and usually does not take a deliberate preventive and/or rehabilitative approach, using psycho-educative interventions focusing on self-care activities, risk prevention, disease management, community involvement, and functional ability.
Heath 2005151Assessment of prevalence of remediable health conditions from in- home geriatric assessments of referred adult protective services. Elder mistreatment has a significant impact on mortality of victims.Retrospective cohort studyAssessments were conducted with referred elders by a nurse- practitioner-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.NoneThe predominance of neglect among the subjects is consistent with the known national distribution of various forms of elder mistreatment. A high level of dementia and depression was also consistent with that found in neglected populations.
Hellstrom 2004152While 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.NoneAlthough symptoms of health-related problems did determine QoL, it was specific symptoms and living conditions that predicted low QoL. Therefore, it is especially important to focus on these symptoms in nursing care. The transition from living independently to receiving help from others probably contributes to a change of values and attitudes about what is important in life. This indicates that an assessment of various symptoms and their importance for each individual is vital. There is a need for thorough assessment and monitoring, e.g. by a nurse, of older people who are living at home and who are restricted in their resources in handling daily living.
Heinrich 200325Support to caregivers of dementia patients; guidance from health personnel.Non- comparativeSecondary 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.NoneWanted mutuality in decisionmaking with staff and partnership and empowerment. Community resources use was the experience they described. Struggled with personnel.
Hepburn 2003117Caregiver well- being, burden, emotional enmeshmentChanging practice projectsTraining program descriptive field study (Level 6)
Well-being, burden, goal setting. Burden CESD competence. (Level 4)
140 caregivers, 40% spouses, 47% adult, childrenManual, CD-ROM, workshops for caregiversImproved reaction to caregiver behavior burden, emotional enmeshment changed, descriptive, increased skill, knowledge, confidence.
Houts 199681Establishment 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 guidelinesProposal of a model for problem-solving in caregiving (Level 6)

No outcome measures (Level 4)
NoneNoneThe role of caregivers needs to be restructured to ensure they become effective members of the health care team. This requires educational materials and training programs.
Jang 200473Depression diminishes response to helping patient.Randomized controlled trialSpouse caregiver, AD patients, RCT (Level 2)

Counseling, neuroticism, depression (Level 3)
160 in each group; caregivers, spouses caring for patient with dementiaEnhanced 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.Caregivers low in neuroticism responded with declining levels of depression, caregiver’s height in neuroticism maintained baseline level of depression.
Kozachik 2001112With 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 trialConvenience 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.Baseline caregiver depression and the number of patient symptoms at baseline were significant predictors of caregiver depression at 9 and 24 weeks. However, no main effect of the experimental condition existed on caregiver depression; a nonsignificant relationship was found between the number of interventions and depression scores for caregivers.
Kurtz 199426Depression, health impact.Cross- sectional studiesDescriptive 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.NoneFamily caregiver variables of depression, impact on health, impact on schedule, and assistance with ADLs were correlated significantly with all patient variables. Family caregivers of elder patients were less depressed and perceived less impact of their schedules. As stage levels of depression progressed, there was a greater impact on caregivers’ health and schedule, and increased involvement in assisting their patients with ADLs, closely mirroring the increasing progression with levels of the patient variables. As increased demands on the family caregiver occurred during the later stage of illness, physical and emotional support for the family caregiver did not occur.
Mahoney 200375Caregiver bother and depression anxietyRandomized controlled trialMultisite randomized trial (Level 2)

Bother, anxiety, depression mastery (Level 4)
100 AD caregivers, 50 in usual care and 49 in technology groupYear-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.Improved caregiver bother and depression for those with lower mastery at baseline. Improved caregiver burden for wives. Affected bother, anxiety, and depression. Benefit from technology.
McCurry 200582Caregiver sleepRandomized 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 problemSleep hygiene, daily walking, daily light exposure (over 3 weeks), written materials, principles of sleep hygiene, control group, general instructionsImprove percent sleep time and total sleep time, fewer waking periods per hour at post-test and 6 months, used actigraph. Effective, MR, control patients spent more time in bed.
McMillan 200683Mastery burdenRandomized controlled trial three- group designRandomized 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 trainingCoping skillsImproved family coping. Improved caregiver QoL, reduced task burden.
Mailey 2002153The 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/researchTheory application (Level 6)

Neal Theory of Home Health Nursing (Level 4)
NoneNoneAfter determining which of Neal’s stages (dependence, moderate dependence, autonomy, or collaborator) a nurse occupies, an agency can provide the appropriate resources (training, checklists, supervision, mentoring) the nurse needs (and can communicate to the caregiver) to function effectively in a disaster.
Miller 200685Caregivers’ harmful behavior toward patientsNon- comparativeDescriptive (Level 5).

Onetime measures; amount of care provided CO, depression (Level 3)
180 caregiver-care recipient dyads.NoneCompromised cognitive status in 39%; caregiver probably affects the quality of care.
Mittelman 200488Prevent negative responses to patients’ troublesome behaviorsRandomized controlled trialRandomized 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.Caregiver distress decreased over time from year 1 to year 4. RCT, effective
Mittelman 200489Fewer depressive symptomsRandomized controlled trialRandomized 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 difference in depression at 4 months, but significant differences at all other points up to 3 years after enrollment.
Metlay 200590In 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- sectionalProspective 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 chi- square 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)NoneAlmost one-third of subjects reported not receiving any instructions on the use of their medications. Approximately 40% used no organizational system to adhere to medication regimens. A substantial proportion of older adults on high-risk medications do not recall receiving instructions for the use of their medications and do not take advantage of existing systems for organizing medication regimens.
Naylor 2000154Identification of problems experienced by elders who were hospitalized and discharged to home.NoncomparativeContent 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.NoneMost problems experienced were either psychological in nature or related to health behaviors. The majority of interventions for both study groups could be linked to problems of circulation and discharge planning.
Naylor 2000155An effective hospital discharge process can contribute to reduced costs and more positive care outcomes for caregivers and their patients at home.Systematic literature reviewSystematic review (Level 1)

Development of a transitional care model (Level 6)
NoneNoneThis program of research has increased an understanding of the differential effects of the model on elders with medical versus surgical cardiac conditions, the profile of elders at risk for poor outcomes, predictors of caregiver burden, the unique needs of elders and the contributions of advanced practice nurses in meeting these needs, and decisionmaking regarding home care referrals.
Naylor 2004156Patients and caregivers report substantial numbers of unmet needs resulting from inadequate discharge procedures.Randomized controlled trialTwo 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.Time to first readmission or death was longer in intervention patients. For intervention patients, only short-term improvements were demonstrated in overall quality of life, physical dimension of quality of life, and patient satisfaction.
Ohman 2004127Establishment 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.NoncomparativePhenomenological 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.NoneThe meaning of district nurses’ (DNs) experiences of encounters with people with serious chronic illness and their close relatives at home can be understood as DNs being welcomed into the ill person’s privacy, to share intimacy and their understanding of illness. This is expressed in three themes: being in a close relationship, sharing an understanding, weaving a web of protection. Listening was a prerequisite for being able to help and support people. A communicative process (interpretation of body language and verbal communication) has the function of establishing a common environment or shared world of meaning. It is difficult for DNs to escape the close relationship after it is established.
Pot 2005157Elders 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.NoneThere was an association between professional care utilization and depressive symptoms over time, and between transitions in professional care and changes in depressive symptoms. Older adults with a transition to professional care reported considerably more depressive symptoms compared with those who did not receive professional care. Older adults who had a backward transition, from professional care to no or informal care only, did not show such change in depressive symptoms.
Rose 200017Combined 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.NoneSuggests a lack of agreement between staff nurses and family caregivers on health issues related to hospitalized older patients.
Roth 200577Caregiver depressionRandomized controlled trialRandomized controlled trial (Level 2)

Geriatric depression, satisfaction with social support (Level 3)
406 spouses, caregivers of dementia patientsIndividual and family counseling; five 90- minute home visits focusing on education and environmental modification every other week over 3 months. Enhanced social support.Improved number of support persons, satisfaction with support network, and support persons’ assistance with caregiving. Increased satisfaction with social support network mediated a significant proportion of the intervention’s impact on caregiver depression.
Schulz & Beach 199921Caregiving as a risk factor for mortalityPerspective population cohort study with 4.5 years of followupSurvey (Level 4)

Morbidity, caregiver strain (Level 3)
Population based, community basedNoneCaregivers who were providing care and experienced strain had risks 63% higher than noncaregiving controls. Mental or emotional strain is a risk factor for mortality among elderly spousal caregivers.
Schulz & Beach 199921Death of caregiver spousesProspective cohortSurvey. 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 spousesNoneAsked if they were experiencing caregiver strain after 4 years of followup, participants providing care who had strain reported mortality 63% higher than noncaregiving controls, and caregivers with no strain did not have elevated mortality rates.
Schumacher 1998158Identification of concepts related to doing family caregiving well.Systematic literature reviewSystematic 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)
NoneNoneTwo issues that should be addressed to advance research are the perspective taken on doing caregiving well and change over time in doing caregiving well.
Silver 2004159Core competence and care effectivenessNoncomparativeDescriptive study (Level 5)

Caregiver competence and effectiveness (Level 3)
Interviews of 30 family caregivers during first 3 monthsNoneCaregivers provided an average of 19 tasks per day. The tasks included functional, care management and technical, nutrition-related tasks. Low caregiver preparedness was associated with unmet training needs and low self- rated caregiver effectiveness.
Sit 2004143Family 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.”Cross-sectional (descriptive)Family caregivers participated in face-to- face 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.NoneAfter 12 weeks, nearly half of the caregivers reported having somatic symptoms and fatigue to the extent that they needed to see a physician. Unmet social support needs were identified as tangible support, including provision of equipment, transportation, financial, respite; informational support, including guidance in health- related care task at home; structural support, including a network of people supplying support. Social support can have a positive impact on caregiver health, and nurses are in an excellent position to advance their practice by offering this professional support by extending nursing care beyond the hospital boundary. Nurses can mobilize supportive resources in the caregiver’s natural network or provide a “created” network to supplement the insufficiency of the family caregiver’s existing network during the period of stress and transition.
Smeenk 1998160Patients 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- sectionalDirect 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.Patient, direct and professional caregivers showed that the specialist nurse coordinator and the 24- hour phone service were important components of the intervention. Most of time spent by specialist nurse coordinator was spent in contact with patients and families. Physicians were seen as having a limited role.
Sorensen 200272Family 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 well- being, feelings of being burdened, depression, compromised physical health, and even premature mortality.Meta-analysisA comprehensive literature review and the “ancestry method” (Level 1)

Identified 78 eligible studies. Outcome measures were caregiver burden, self- rated 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, multicomponentInterventions are, on average, successful in alleviating burden and depression, increasing general subjective well-being, and increasing caregiving ability/knowledge. The majority of these effects persist after an average of 7 months after intervention. Providing psycho-educational interventions, psychotherapy, and a combination of several of these interventions is most effective for improving caregiver well-being in the short term. Individual interventions were more effective at improving caregiver well-being, whereas interventions in groups were more effective at improving care receiver symptoms.
Steffen 200057Anger and hostility experienced by caregivers can impact psychosocial functioning.Randomized controlled trialInterviews 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.Family caregivers may benefit from innovative anger management interventions based on cognitive/behavioral principles and techniques.
Teng 2003162Early supported discharge programs may decrease hospital costs without having a negative effect on patient outcomes.Randomized controlled trialTwo 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 in- home 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.Providing care at home was no more (or less) expensive for those with greater functional limitations than for those with less. Caregivers in the early supported discharger group scored lower on the Burden Index than caregivers with usual care.
Toseland 2004118Health 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 trialTwo-level randomized controlled trial (Level 2)

General Health Questionnaire, Medical Outcome Short Form Health Survey, Social Provisions Scale, psychological well- being, 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.Caregivers reported that by end of 1 year, they felt the health education program helped them learn about community resources and how to access them.
Travis 200012Improving understanding of how family caregivers deliver complex care can result in better care.NoncomparativeSemistructured, 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, administration procedures, and safety issues. (Level 3)
23 family caregivers providing 122 separate accounts.NonePrimary care providers must continually reevaluate and simplify medication regimens for dependent elderly persons in the care of family members, and the family caregivers must be given adequate training and access to ongoing information support systems to help them perform safe and effective medication administration responsibilities.
Visser-Meily 200574Identification of effectiveness of different types of intervention programs for caregivers of stroke patients.Systematic literature reviewSystematic 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 reviewNoneCould not identify sufficient evidence to confirm the efficacy of interventions, but counseling programs appeared to have the most positive outcome.
Ward-Griffin & McKeever 2000140Quality of care delivered by informal caregiver, contingent upon communication and relationship with nurseCross- sectionalCritical 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)Relationships between family and professional caregivers appear to be exploitive in nature (economic vs. humanitarian). Family caregivers were contributing more effort toward caring for recipients than nurses, and were not receiving adequate resources to assure minimization of risk to care recipients. Improved communication between formal and informal caregivers may lead to coalition building and collective lobbying for resources, but ultimately a “transformation of the broader political and economic conditions of home care is necessary” for an equitable sharing of caregiving responsibilities.
Weuve 2000139Outpatient geriatric evaluation and management (GEM) may alleviate caregiver burden, e.g., physical, psychological, social, and economic distress.Randomized controlled studyRandomized 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.GEM and control caregivers were similar at baseline. During the 1-year observation period, mean burden scores of GEM caregiver group tended to decline, while mean scores of control tended to increase or decline less substantially. Assignment to GEM was associated with a reduction in the amount of time caregivers devoted to assisting recipients in some specific tasks. Caregivers who were less experienced and less closely related to their care recipients tended to benefit more from GEM.
Williamson & Shaffer 2001163Potentially harmful behaviors to patientsNoncomparativeDescriptive interviews (Level 5)

Caregiver depression (Level 3)
142 caregivers—98 wives, 44 husbands— interviewedNoneDepressed caregivers are more likely to treat spouses in hurtful ways. Premorbid relationships were directly related. If perceived as rewarding, less depression and less harmful behaviors.
Zarit 199879Family caregivers of dementia patients can suffer overwhelming and uncontrollable stress that can take a toll on emotional health and well- being. Programs can be developed to relieve these negative effects.Nonrandomized trialsQuasi-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 of adult day care by caregivers of dementia patients results in lower levels of caregiving-related stress and better psychological well- being when compared to that of controls.
Zarit 1986164Caregiver burden can affect quality of life and decisions to institutionalize.Time seriesInterviews (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.NoneSeverity of the patient’s symptoms did not differentiate caregivers who placed relatives from those who did not.
Zwygart- Stauffacher 2000134It 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- sectionalPhase 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.NoneFor both caregivers and survivors, the most highly rated domain for importance was the need for information. Both survivors and caregivers identified the importance of clear information about medications, tests, and treatments, as well as wanting time for questions to be answered and resources. The nurse is pivotal in activating discharge services and facilitating smooth transition of care across health care settings. The nurse can provide caregivers more information on what they can expect through written, verbal, and electronic means.

From: Chapter 14, Supporting Family Caregivers in Providing Care

Cover of Patient Safety and Quality
Patient Safety and Quality: An Evidence-Based Handbook for Nurses.
Hughes RG, editor.

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