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1.  Caregiver- and Patient-Directed Interventions for Dementia 
Executive Summary
In early August 2007, the Medical Advisory Secretariat began work on the Aging in the Community project, an evidence-based review of the literature surrounding healthy aging in the community. The Health System Strategy Division at the Ministry of Health and Long-Term Care subsequently asked the secretariat to provide an evidentiary platform for the ministry’s newly released Aging at Home Strategy.
After a broad literature review and consultation with experts, the secretariat identified 4 key areas that strongly predict an elderly person’s transition from independent community living to a long-term care home. Evidence-based analyses have been prepared for each of these 4 areas: falls and fall-related injuries, urinary incontinence, dementia, and social isolation. For the first area, falls and fall-related injuries, an economic model is described in a separate report.
Please visit the Medical Advisory Secretariat Web site,, to review these titles within the Aging in the Community series.
Aging in the Community: Summary of Evidence-Based Analyses
Prevention of Falls and Fall-Related Injuries in Community-Dwelling Seniors: An Evidence-Based Analysis
Behavioural Interventions for Urinary Incontinence in Community-Dwelling Seniors: An Evidence-Based Analysis
Caregiver- and Patient-Directed Interventions for Dementia: An Evidence-Based Analysis
Social Isolation in Community-Dwelling Seniors: An Evidence-Based Analysis
The Falls/Fractures Economic Model in Ontario Residents Aged 65 Years and Over (FEMOR)
This report features the evidence-based analysis on caregiver- and patient-directed interventions for dementia and is broken down into 4 sections:
Caregiver-Directed Interventions for Dementia
Patient-Directed Interventions for Dementia
Economic Analysis of Caregiver- and Patient-Directed Interventions for Dementia
Caregiver-Directed Interventions for Dementia
To identify interventions that may be effective in supporting the well-being of unpaid caregivers of seniors with dementia living in the community.
Clinical Need: Target Population and Condition
Dementia is a progressive and largely irreversible syndrome that is characterized by a loss of cognitive function severe enough to impact social or occupational functioning. The components of cognitive function affected include memory and learning, attention, concentration and orientation, problem-solving, calculation, language, and geographic orientation. Dementia was identified as one of the key predictors in a senior’s transition from independent community living to admission to a long-term care (LTC) home, in that approximately 90% of individuals diagnosed with dementia will be institutionalized before death. In addition, cognitive decline linked to dementia is one of the most commonly cited reasons for institutionalization.
Prevalence estimates of dementia in the Ontario population have largely been extrapolated from the Canadian Study of Health and Aging conducted in 1991. Based on these estimates, it is projected that there will be approximately 165,000 dementia cases in Ontario in the year 2008, and by 2010 the number of cases will increase by nearly 17% over 2005 levels. By 2020 the number of cases is expected to increase by nearly 55%, due to a rise in the number of people in the age categories with the highest prevalence (85+). With the increase in the aging population, dementia will continue to have a significant economic impact on the Canadian health care system. In 1991, the total costs associated with dementia in Canada were $3.9 billion (Cdn) with $2.18 billion coming from LTC.
Caregivers play a crucial role in the management of individuals with dementia because of the high level of dependency and morbidity associated with the condition. It has been documented that a greater demand is faced by dementia caregivers compared with caregivers of persons with other chronic diseases. The increased burden of caregiving contributes to a host of chronic health problems seen among many informal caregivers of persons with dementia. Much of this burden results from managing the behavioural and psychological symptoms of dementia (BPSD), which have been established as a predictor of institutionalization for elderly patients with dementia.
It is recognized that for some patients with dementia, an LTC facility can provide the most appropriate care; however, many patients move into LTC unnecessarily. For individuals with dementia to remain in the community longer, caregivers require many types of formal and informal support services to alleviate the stress of caregiving. These include both respite care and psychosocial interventions. Psychosocial interventions encompass a broad range of interventions such as psychoeducational interventions, counseling, supportive therapy, and behavioural interventions.
Assuming that 50% of persons with dementia live in the community, a conservative estimate of the number of informal caregivers in Ontario is 82,500. Accounting for the fact that 29% of people with dementia live alone, this leaves a remaining estimate of 58,575 Ontarians providing care for a person with dementia with whom they reside.
Description of Interventions
The 2 main categories of caregiver-directed interventions examined in this review are respite care and psychosocial interventions. Respite care is defined as a break or relief for the caregiver. In most cases, respite is provided in the home, through day programs, or at institutions (usually 30 days or less). Depending on a caregiver’s needs, respite services will vary in delivery and duration. Respite care is carried out by a variety of individuals, including paid staff, volunteers, family, or friends.
Psychosocial interventions encompass a broad range of interventions and have been classified in various ways in the literature. This review will examine educational, behavioural, dementia-specific, supportive, and coping interventions. The analysis focuses on behavioural interventions, that is, those designed to help the caregiver manage BPSD. As described earlier, BPSD are one of the most challenging aspects of caring for a senior with dementia, causing an increase in caregiver burden. The analysis also examines multicomponent interventions, which include at least 2 of the above-mentioned interventions.
Methods of Evidence-Based Analysis
A comprehensive search strategy was used to identify systematic reviews and randomized controlled trials (RCTs) that examined the effectiveness of interventions for caregivers of dementia patients.
Section 2.1
Are respite care services effective in supporting the well-being of unpaid caregivers of seniors with dementia in the community?
Do respite care services impact on rates of institutionalization of these seniors?
Section 2.2
Which psychosocial interventions are effective in supporting the well-being of unpaid caregivers of seniors with dementia in the community?
Which interventions reduce the risk for institutionalization of seniors with dementia?
Outcomes of Interest
any quantitative measure of caregiver psychological health, including caregiver burden, depression, quality of life, well-being, strain, mastery (taking control of one’s situation), reactivity to behaviour problems, etc.;
rate of institutionalization; and
Assessment of Quality of Evidence
The quality of the evidence was assessed as High, Moderate, Low, or Very low according to the GRADE methodology and GRADE Working Group. As per GRADE the following definitions apply:
Summary of Findings
Conclusions in Table 1 are drawn from Sections 2.1 and 2.2 of the report.
Summary of Conclusions on Caregiver-Directed Interventions
There is limited evidence from RCTs that respite care is effective in improving outcomes for those caring for seniors with dementia.
There is considerable qualitative evidence of the perceived benefits of respite care.
Respite care is known as one of the key formal support services for alleviating caregiver burden in those caring for dementia patients.
Respite care services need to be tailored to individual caregiver needs as there are vast differences among caregivers and patients with dementia (severity, type of dementia, amount of informal/formal support available, housing situation, etc.)
There is moderate- to high-quality evidence that individual behavioural interventions (≥ 6 sessions), directed towards the caregiver (or combined with the patient) are effective in improving psychological health in dementia caregivers.
There is moderate- to high-quality evidence that multicomponent interventions improve caregiver psychosocial health and may affect rates of institutionalization of dementia patients.
RCT indicates randomized controlled trial.
Patient-Directed Interventions for Dementia
The section on patient-directed interventions for dementia is broken down into 4 subsections with the following questions:
3.1 Physical Exercise for Seniors with Dementia – Secondary Prevention
What is the effectiveness of physical exercise for the improvement or maintenance of basic activities of daily living (ADLs), such as eating, bathing, toileting, and functional ability, in seniors with mild to moderate dementia?
3.2 Nonpharmacologic and Nonexercise Interventions to Improve Cognitive Functioning in Seniors With Dementia – Secondary Prevention
What is the effectiveness of nonpharmacologic interventions to improve cognitive functioning in seniors with mild to moderate dementia?
3.3 Physical Exercise for Delaying the Onset of Dementia – Primary Prevention
Can exercise decrease the risk of subsequent cognitive decline/dementia?
3.4 Cognitive Interventions for Delaying the Onset of Dementia – Primary Prevention
Does cognitive training decrease the risk of cognitive impairment, deterioration in the performance of basic ADLs or instrumental activities of daily living (IADLs),1 or incidence of dementia in seniors with good cognitive and physical functioning?
Clinical Need: Target Population and Condition
Secondary Prevention2
Physical deterioration is linked to dementia. This is thought to be due to reduced muscle mass leading to decreased activity levels and muscle atrophy, increasing the potential for unsafe mobility while performing basic ADLs such as eating, bathing, toileting, and functional ability.
Improved physical conditioning for seniors with dementia may extend their independent mobility and maintain performance of ADL.
Nonpharmacologic and Nonexercise Interventions
Cognitive impairments, including memory problems, are a defining feature of dementia. These impairments can lead to anxiety, depression, and withdrawal from activities. The impact of these cognitive problems on daily activities increases pressure on caregivers.
Cognitive interventions aim to improve these impairments in people with mild to moderate dementia.
Primary Prevention3
Various vascular risk factors have been found to contribute to the development of dementia (e.g., hypertension, hypercholesterolemia, diabetes, overweight).
Physical exercise is important in promoting overall and vascular health. However, it is unclear whether physical exercise can decrease the risk of cognitive decline/dementia.
Nonpharmacologic and Nonexercise Interventions
Having more years of education (i.e., a higher cognitive reserve) is associated with a lower prevalence of dementia in crossectional population-based studies and a lower incidence of dementia in cohorts followed longitudinally. However, it is unclear whether cognitive training can increase cognitive reserve or decrease the risk of cognitive impairment, prevent or delay deterioration in the performance of ADLs or IADLs or reduce the incidence of dementia.
Description of Interventions
Physical exercise and nonpharmacologic/nonexercise interventions (e.g., cognitive training) for the primary and secondary prevention of dementia are assessed in this review.
Evidence-Based Analysis Methods
A comprehensive search strategy was used to identify systematic reviews and RCTs that examined the effectiveness, safety and cost effectiveness of exercise and cognitive interventions for the primary and secondary prevention of dementia.
Section 3.1: What is the effectiveness of physical exercise for the improvement or maintenance of ADLs in seniors with mild to moderate dementia?
Section 3.2: What is the effectiveness of nonpharmacologic/nonexercise interventions to improve cognitive functioning in seniors with mild to moderate dementia?
Section 3.3: Can exercise decrease the risk of subsequent cognitive decline/dementia?
Section 3.4: Does cognitive training decrease the risk of cognitive impairment, prevent or delay deterioration in the performance of ADLs or IADLs, or reduce the incidence of dementia in seniors with good cognitive and physical functioning?
Assessment of Quality of Evidence
The quality of the evidence was assessed as High, Moderate, Low, or Very low according to the GRADE methodology. As per GRADE the following definitions apply:
Summary of Findings
Table 2 summarizes the conclusions from Sections 3.1 through 3.4.
Summary of Conclusions on Patient-Directed Interventions*
Previous systematic review indicated that “cognitive training” is not effective in patients with dementia.
A recent RCT suggests that CST (up to 7 weeks) is effective for improving cognitive function and quality of life in patients with dementia.
Regular leisure time physical activity in midlife is associated with a reduced risk of dementia in later life (mean follow-up 21 years).
Regular physical activity in seniors is associated with a reduced risk of cognitive decline (mean follow-up 2 years).
Regular physical activity in seniors is associated with a reduced risk of dementia (mean follow-up 6–7 years).
Evidence that cognitive training for specific functions (memory, reasoning, and speed of processing) produces improvements in these specific domains.
Limited inconclusive evidence that cognitive training can offset deterioration in the performance of self-reported IADL scores and performance assessments.
1° indicates primary; 2°, secondary; CST, cognitive stimulation therapy; IADL, instrumental activities of daily living; RCT, randomized controlled trial.
Benefit/Risk Analysis
As per the GRADE Working Group, the overall recommendations consider 4 main factors:
the trade-offs, taking into account the estimated size of the effect for the main outcome, the confidence limits around those estimates, and the relative value placed on the outcome;
the quality of the evidence;
translation of the evidence into practice in a specific setting, taking into consideration important factors that could be expected to modify the size of the expected effects such as proximity to a hospital or availability of necessary expertise; and
uncertainty about the baseline risk for the population of interest.
The GRADE Working Group also recommends that incremental costs of health care alternatives should be considered explicitly alongside the expected health benefits and harms. Recommendations rely on judgments about the value of the incremental health benefits in relation to the incremental costs. The last column in Table 3 reflects the overall trade-off between benefits and harms (adverse events) and incorporates any risk/uncertainty (cost-effectiveness).
Overall Summary Statement of the Benefit and Risk for Patient-Directed Interventions*
Economic Analysis
Budget Impact Analysis of Effective Interventions for Dementia
Caregiver-directed behavioural techniques and patient-directed exercise programs were found to be effective when assessing mild to moderate dementia outcomes in seniors living in the community. Therefore, an annual budget impact was calculated based on eligible seniors in the community with mild and moderate dementia and their respective caregivers who were willing to participate in interventional home sessions. Table 4 describes the annual budget impact for these interventions.
Annual Budget Impact (2008 Canadian Dollars)
Assumed 7% prevalence of dementia aged 65+ in Ontario.
Assumed 8 weekly sessions plus 4 monthly phone calls.
Assumed 12 weekly sessions plus biweekly sessions thereafter (total of 20).
Assumed 2 sessions per week for first 5 weeks. Assumed 90% of seniors in the community with dementia have mild to moderate disease. Assumed 4.5% of seniors 65+ are in long-term care, and the remainder are in the community. Assumed a rate of participation of 60% for both patients and caregivers and of 41% for patient-directed exercise. Assumed 100% compliance since intervention administered at the home. Cost for trained staff from Ministry of Health and Long-Term Care data source. Assumed cost of personal support worker to be equivalent to in-home support. Cost for recreation therapist from Alberta government Website.
Note: This budget impact analysis was calculated for the first year after introducing the interventions from the Ministry of Health and Long-Term Care perspective using prevalence data only. Prevalence estimates are for seniors in the community with mild to moderate dementia and their respective caregivers who are willing to participate in an interventional session administered at the home setting. Incidence and mortality rates were not factored in. Current expenditures in the province are unknown and therefore were not included in the analysis. Numbers may change based on population trends, rate of intervention uptake, trends in current programs in place in the province, and assumptions on costs. The number of patients was based on patients likely to access these interventions in Ontario based on assumptions stated below from the literature. An expert panel confirmed resource consumption.
PMCID: PMC3377513  PMID: 23074509
2.  Behavioural Interventions for Urinary Incontinence in Community-Dwelling Seniors 
Executive Summary
In early August 2007, the Medical Advisory Secretariat began work on the Aging in the Community project, an evidence-based review of the literature surrounding healthy aging in the community. The Health System Strategy Division at the Ministry of Health and Long-Term Care subsequently asked the secretariat to provide an evidentiary platform for the ministry’s newly released Aging at Home Strategy.
After a broad literature review and consultation with experts, the secretariat identified 4 key areas that strongly predict an elderly person’s transition from independent community living to a long-term care home. Evidence-based analyses have been prepared for each of these 4 areas: falls and fall-related injuries, urinary incontinence, dementia, and social isolation. For the first area, falls and fall-related injuries, an economic model is described in a separate report.
Please visit the Medical Advisory Secretariat Web site,, to review these titles within the Aging in the Community series.
Aging in the Community: Summary of Evidence-Based Analyses
Prevention of Falls and Fall-Related Injuries in Community-Dwelling Seniors: An Evidence-Based Analysis
Behavioural Interventions for Urinary Incontinence in Community-Dwelling Seniors: An Evidence-Based Analysis
Caregiver- and Patient-Directed Interventions for Dementia: An Evidence-Based Analysis
Social Isolation in Community-Dwelling Seniors: An Evidence-Based Analysis
The Falls/Fractures Economic Model in Ontario Residents Aged 65 Years and Over (FEMOR)
To assess the effectiveness of behavioural interventions for the treatment and management of urinary incontinence (UI) in community-dwelling seniors.
Clinical Need: Target Population and Condition
Urinary incontinence defined as “the complaint of any involuntary leakage of urine” was identified as 1 of the key predictors in a senior’s transition from independent community living to admission to a long-term care (LTC) home. Urinary incontinence is a health problem that affects a substantial proportion of Ontario’s community-dwelling seniors (and indirectly affects caregivers), impacting their health, functioning, well-being and quality of life. Based on Canadian studies, prevalence estimates range from 9% to 30% for senior men and nearly double from 19% to 55% for senior women. The direct and indirect costs associated with UI are substantial. It is estimated that the total annual costs in Canada are $1.5 billion (Cdn), and that each year a senior living at home will spend $1,000 to $1,500 on incontinence supplies.
Interventions to treat and manage UI can be classified into broad categories which include lifestyle modification, behavioural techniques, medications, devices (e.g., continence pessaries), surgical interventions and adjunctive measures (e.g., absorbent products).
The focus of this review is behavioural interventions, since they are commonly the first line of treatment considered in seniors given that they are the least invasive options with no reported side effects, do not limit future treatment options, and can be applied in combination with other therapies. In addition, many seniors would not be ideal candidates for other types of interventions involving more risk, such as surgical measures.
Note: It is recognized that the terms “senior” and “elderly” carry a range of meanings for different audiences; this report generally uses the former, but the terms are treated here as essentially interchangeable.
Description of Technology/Therapy
Behavioural interventions can be divided into 2 categories according to the target population: caregiver-dependent techniques and patient-directed techniques. Caregiver-dependent techniques (also known as toileting assistance) are targeted at medically complex, frail individuals living at home with the assistance of a caregiver, who tends to be a family member. These seniors may also have cognitive deficits and/or motor deficits. A health care professional trains the senior’s caregiver to deliver an intervention such as prompted voiding, habit retraining, or timed voiding. The health care professional who trains the caregiver is commonly a nurse or a nurse with advanced training in the management of UI, such as a nurse continence advisor (NCA) or a clinical nurse specialist (CNS).
The second category of behavioural interventions consists of patient-directed techniques targeted towards mobile, motivated seniors. Seniors in this population are cognitively able, free from any major physical deficits, and motivated to regain and/or improve their continence. A nurse or a nurse with advanced training in UI management, such as an NCA or CNS, delivers the patient-directed techniques. These are often provided as multicomponent interventions including a combination of bladder training techniques, pelvic floor muscle training (PFMT), education on bladder control strategies, and self-monitoring. Pelvic floor muscle training, defined as a program of repeated pelvic floor muscle contractions taught and supervised by a health care professional, may be employed as part of a multicomponent intervention or in isolation.
Education is a large component of both caregiver-dependent and patient-directed behavioural interventions, and patient and/or caregiver involvement as well as continued practice strongly affect the success of treatment. Incontinence products, which include a large variety of pads and devices for effective containment of urine, may be used in conjunction with behavioural techniques at any point in the patient’s management.
Evidence-Based Analysis Methods
A comprehensive search strategy was used to identify systematic reviews and randomized controlled trials that examined the effectiveness, safety, and cost-effectiveness of caregiver-dependent and patient-directed behavioural interventions for the treatment of UI in community-dwelling seniors (see Appendix 1).
Research Questions
Are caregiver-dependent behavioural interventions effective in improving UI in medically complex, frail community-dwelling seniors with/without cognitive deficits and/or motor deficits?
Are patient-directed behavioural interventions effective in improving UI in mobile, motivated community-dwelling seniors?
Are behavioural interventions delivered by NCAs or CNSs in a clinic setting effective in improving incontinence outcomes in community-dwelling seniors?
Assessment of Quality of Evidence
The quality of the evidence was assessed as high, moderate, low, or very low according to the GRADE methodology and GRADE Working Group. As per GRADE the following definitions apply:
Summary of Findings
Executive Summary Table 1 summarizes the results of the analysis.
The available evidence was limited by considerable variation in study populations and in the type and severity of UI for studies examining both caregiver-directed and patient-directed interventions. The UI literature frequently is limited to reporting subjective outcome measures such as patient observations and symptoms. The primary outcome of interest, admission to a LTC home, was not reported in the UI literature. The number of eligible studies was low, and there were limited data on long-term follow-up.
Summary of Evidence on Behavioural Interventions for the Treatment of Urinary Incontinence in Community-Dwelling Seniors
Prompted voiding
Habit retraining
Timed voiding
Bladder training
PFMT (with or without biofeedback)
Bladder control strategies
CI refers to confidence interval; CNS, clinical nurse specialist; NCA, nurse continence advisor; PFMT, pelvic floor muscle training; RCT, randomized controlled trial; WMD, weighted mean difference; UI, urinary incontinence.
Economic Analysis
A budget impact analysis was conducted to forecast costs for caregiver-dependent and patient-directed multicomponent behavioural techniques delivered by NCAs, and PFMT alone delivered by physiotherapists. All costs are reported in 2008 Canadian dollars. Based on epidemiological data, published medical literature and clinical expert opinion, the annual cost of caregiver-dependent behavioural techniques was estimated to be $9.2 M, while the annual costs of patient-directed behavioural techniques delivered by either an NCA or physiotherapist were estimated to be $25.5 M and $36.1 M, respectively. Estimates will vary if the underlying assumptions are changed.
Currently, the province of Ontario absorbs the cost of NCAs (available through the 42 Community Care Access Centres across the province) in the home setting. The 2007 Incontinence Care in the Community Report estimated that the total cost being absorbed by the public system of providing continence care in the home is $19.5 M in Ontario. This cost estimate included resources such as personnel, communication with physicians, record keeping and product costs. Clinic costs were not included in this estimation because currently these come out of the global budget of the respective hospital and very few continence clinics actually exist in the province. The budget impact analysis factored in a cost for the clinic setting, assuming that the public system would absorb the cost with this new model of community care.
Considerations for Ontario Health System
An expert panel on aging in the community met on 3 occasions from January to May 2008, and in part, discussed treatment of UI in seniors in Ontario with a focus on caregiver-dependent and patient-directed behavioural interventions. In particular, the panel discussed how treatment for UI is made available to seniors in Ontario and who provides the service. Some of the major themes arising from the discussions included:
Services/interventions that currently exist in Ontario offering behavioural interventions to treat UI are not consistent. There is a lack of consistency in how seniors access services for treatment of UI, who manages patients and what treatment patients receive.
Help-seeking behaviours are important to consider when designing optimal service delivery methods.
There is considerable social stigma associated with UI and therefore there is a need for public education and an awareness campaign.
The cost of incontinent supplies and the availability of NCAs were highlighted.
There is moderate-quality evidence that the following interventions are effective in improving UI in mobile motivated seniors:
Multicomponent behavioural interventions including a combination of bladder training techniques, PFMT (with or without biofeedback), education on bladder control strategies and self-monitoring techniques.
Pelvic floor muscle training alone.
There is moderate quality evidence that when behavioural interventions are led by NCAs or CNSs in a clinic setting, they are effective in improving UI in seniors.
There is limited low-quality evidence that prompted voiding may be effective in medically complex, frail seniors with motivated caregivers.
There is insufficient evidence for the following interventions in medically complex, frail seniors with motivated caregivers:
habit retraining, and
timed voiding.
PMCID: PMC3377527  PMID: 23074508
3.  Self-stigma among caregivers of people with mental illness: toward caregivers’ empowerment 
In addition to economic and material burdens, caregivers of people with mental illness are exposed to psychosocial challenges. Self-stigma is among the psychological challenges that can be exacerbated by intrinsic and/or extrinsic factors. Caregivers’ self-stigma can negatively influence the patients’ treatment and rehabilitation process. The objective of this study was to measure the level and correlates of self-stigma among caregivers of people with mental illness.
An interviewer-administered cross-sectional study was conducted in the Jimma University Specialized Hospital Psychiatry Clinic in Ethiopia on a sample of 422 caregivers. Data were collected by trained nurses working in the clinic using a pretested questionnaire. Multivariate linear regression was performed to identify the correlates of self-stigma among caregivers of people with mental illness.
The majority (70.38%) of the caregivers were male. On a scale of 0 to 15, with 0 being low and 15 being high, the average self-stigmatizing attitude score was 4.68 (±4.11). A statistically significant difference in mean self-stigma score was found between urban and rural respondents (t=3.95, P<0.05). Self-stigma of caregivers showed significant positive correlation with perceived signs of mental illness (r=0.18, P<0.001), perceived supernatural explanations of mental illness (r=0.26, P<0.001), and perceived psychosocial and biological explanations of mental illness (r=0.12, P<0.01). The only independent predictor of caregivers’ self-stigma was perceived supernatural explanation of mental illness (standardized β=0.22, P<0.001).
The tendency of caregivers to avoid being identified with the patients was observed. Low exposure to mental health information was also reported. Caregivers’ self-stigma in this study was significantly correlated with perceived supernatural explanation of mental illness. Since caregivers’ self-stigma may negatively influence patients’ treatment-seeking, adherence, and rehabilitation processes, programs that enhance coping strategies by strengthening self-esteem and empowerment by health care providers and establish family support groups may be helpful to tackle self-stigma among caregivers of people with mental illness.
PMCID: PMC3896287  PMID: 24470760
self-stigma; internalized stigma; caregivers; mental illness
4.  Assessment of the Needs of Caregivers of Stroke Patients at State-Owned Acute-Care Hospitals in Southern Vietnam, 2011 
Care for stroke patients has improved steadily in southern Vietnam. Medical treatments such as thrombolytic therapy have been implemented at several hospitals, and stroke-care units composed of a team of various health professionals have been created. However, little attention has been focused on providing support to caregivers of stroke patients. This study aimed to characterize the caregivers of stroke patients who were treated in state-owned acute-care hospitals and to learn about their needs when patients are discharged. Such information can be used to enhance the caregiver’s support system.
We used questionnaires to conduct a descriptive study in 2011 at a state-owned acute-care hospital in southern Vietnam. We recruited study participants from among caregivers of stroke patients who had been informed of their hospital discharge date. We assessed 8 caregiver characteristics, and caregiver participants selected their needs from the survey’s list of 15 possible needs. We analyzed the data by using the independent sample t test and logistic regression.
Of the 93 caregivers who consented to participate, 86 (92.5%) completed the survey and indicated their concerns at discharge. The most frequently cited need was information on how to prevent stroke recurrence (72, 83.7%), followed by which drugs are most effective in preventing a relapse (62, 72.1%), how long recovery would take (61, 70.9%), and availability of hospitals in the patient’s hometown (60, 69.8%). A little over half of caregivers indicated financial concerns. A caregiver’s need for information on diet for a stroke survivor increased with the caregiver’s education level.
This study revealed several needs among caregivers of stroke survivors in southern Vietnam that are similar to those found by studies of caregivers of stroke survivors in high-income countries. Our findings suggest that comprehensive stroke care that includes caregiver education about healthful diets and prevention of stroke recurrence is needed at state-owned acute-care hospitals in southern Vietnam.
PMCID: PMC3754881  PMID: 23968582
5.  Patient and Caregiver Characteristics Associated with Depression in Caregivers of Patients with Dementia 
Journal of General Internal Medicine  2003;18(12):1006-1014.
Many patients with dementia who live at home would require nursing home care if they did not have the assistance of family caregivers. However, caregiving sometimes has adverse health consequences for caregivers, including very high rates of depression. The goal of this study was to determine the patient and caregiver characteristics associated with depression among caregivers of patients with dementia.
Cross-sectional study.
Five thousand six hundred and twenty-seven patients with moderate to advanced dementia and their primary caregivers upon enrollment in the Medicare Alzheimer's Disease Demonstration (MADDE) at 8 locations in the United States.
Caregiver depression was defined as 6 or more symptoms on the 15-item Geriatric Depression Scale. Patient characteristics measured included ethnicity and other demographic characteristics, income, activities of daily living (ADL) function, Mini-Mental Status Exam (MMSE) score, and behavioral problems. Caregiver characteristics measured included demographic characteristics, relationship to the patient, hours spent caregiving, and ADL and Instrumental Activities of Daily Living (IADL) function. We used χ2 and t tests to measure the bivariate relationships between patient and caregiver predictors and caregiver depression. We used logistic regression to determine the independent predictors of caregiver depression.
Thirty-two percent of caregivers reported 6 or more symptoms of depression and were classified as depressed. Independent patient predictors of caregiver depression included younger age (odds ratio [OR], 1.91; 95% confidence interval [CI], 1.33 to 2.76 in patients less than 65 years compared to patients over 85 years), white (OR, 1.53; 95% CI, 1.18 to 1.99) and Hispanic ethnicity (OR, 2.50; 95% CI, 1.69 to 3.70) compared to black ethnicity, education (OR, 1.16; 95% CI, 1.01 to 1.33 for those with less than a high school education), ADL dependence (OR, 1.55; 95% CI, 1.26 to 1.90 for patients dependent in 2 or more ADL compared to patients dependent in no ADL), and behavioral disturbance, particularly angry or aggressive behavior (OR, 1.47; 95% CI, 1.27 to 1.69 for patients with angry or aggressive behavior). Independent caregiver predictors of depression included low income (OR, 1.45; 95% CI, 1.18 to 1.77 for less than $10,000/per year, compared to >$20,000 per year), the relationship to the patient (OR, 2.73; 95% CI, 1.31 to 5.72 for wife, compared to son of male patient), hours spent caregiving (OR, 1.89; 95% CI, 1.51 to 2.38 for 40 to 79 hours/week compared to less than 40 hours/week), and functional dependence (OR, 2.53; 95% CI, 2.13 to 3.01 for ADL dependent compared to IADL independent).
Caregiver depression is a complex process, influenced by ethnicity as well as diverse patient and caregiver characteristics. Efforts to identify and treat caregiver depression will need to be multidisciplinary and focus on multiple risk factors simultaneously.
PMCID: PMC1494966  PMID: 14687259
caregivers; depression; Alzheimer's disease; dementia; race/ethnicity
6.  Patterns of Caregiving Among Patients Hospitalized With Cardiovascular Disease 
Background and Objectives
Cardiac caregivers may represent a novel low-cost strategy to improve patient adherence to medical follow-up and guidelines and, ultimately, patient outcomes. Prior work on caregiving has been conducted primarily in mental health and cancer research; few data have systematically evaluated caregivers of cardiac patients. The purpose of this study was to evaluate the patterns of caregiving and characteristics of caregivers among hospitalized patients with cardiovascular disease (CVD) to assess disparities in caregiver burden and to determine the potential for caregivers to impact clinical outcomes.
Subjects and Methods
Consecutive patients admitted to the cardiovascular service line at a university medical center during an 11-month period were included in the Family Cardiac Caregiver Investigation To Evaluate Outcomes (FIT-O) study. Patients (n = 4500; 59% white, 62% male, 93% participation rate) completed a standardized interviewer-assisted questionnaire in English or Spanish regarding assistance with medical care, daily activities, and medications in the past year and plans for posthospitalization. In univariate and multiple variable analyses, caregivers were categorized as either paid/professional (eg, nurse/home aide) or nonpaid (eg, family member/friend).
Results and Conclusions
Among CVD patients, 13% planned to have a paid caregiver and 51% a nonpaid caregiver at discharge. Planned paid caregiving was more prevalent among racial/ethnic minority versus white patients (odds ratio, 1.5; 95% confidence interval, 1.2–1.8); planned nonpaid caregiving prevalence did not differ by race/ethnicity. Most nonpaid caregivers were female (78%). Patients who had nonpaid caregivers in the year prior to hospitalization (28%) reported grocery shopping/meal preparation (32%), transport to/arranging doctor visits (30%), and medication adherence/medical needs (25%) as top tasks caregivers assisted with. Following hospitalization, a majority of patients expect nonpaid caregivers, primarily women, to assist with tasks that have the potential to improve CVD outcomes such as medical follow-up, medication adherence, and nutrition, suggesting that these are important targets for caregiver education.
PMCID: PMC3230071  PMID: 21330929
cardiovascular disease; caregiving; education; prevention
7.  Associations between Stroke Mortality and Weekend Working by Stroke Specialist Physicians and Registered Nurses: Prospective Multicentre Cohort Study 
PLoS Medicine  2014;11(8):e1001705.
In a multicenter observational study, Benjamin Bray and colleagues evaluate whether weekend rounds by stroke specialist physicians, or the ratio of registered nurses to beds on weekends, is associated with patient mortality after stroke.
Please see later in the article for the Editors' Summary
Observational studies have reported higher mortality for patients admitted on weekends. It is not known whether this “weekend effect” is modified by clinical staffing levels on weekends. We aimed to test the hypotheses that rounds by stroke specialist physicians 7 d per week and the ratio of registered nurses to beds on weekends are associated with mortality after stroke.
Methods and Findings
We conducted a prospective cohort study of 103 stroke units (SUs) in England. Data of 56,666 patients with stroke admitted between 1 June 2011 and 1 December 2012 were extracted from a national register of stroke care in England. SU characteristics and staffing levels were derived from cross-sectional survey. Cox proportional hazards models were used to estimate hazard ratios (HRs) of 30-d post-admission mortality, adjusting for case mix, organisational, staffing, and care quality variables. After adjusting for confounders, there was no significant difference in mortality risk for patients admitted to a stroke service with stroke specialist physician rounds fewer than 7 d per week (adjusted HR [aHR] 1.04, 95% CI 0.91–1.18) compared to patients admitted to a service with rounds 7 d per week. There was a dose–response relationship between weekend nurse/bed ratios and mortality risk, with the highest risk of death observed in stroke services with the lowest nurse/bed ratios. In multivariable analysis, patients admitted on a weekend to a SU with 1.5 nurses/ten beds had an estimated adjusted 30-d mortality risk of 15.2% (aHR 1.18, 95% CI 1.07–1.29) compared to 11.2% for patients admitted to a unit with 3.0 nurses/ten beds (aHR 0.85, 95% CI 0.77–0.93), equivalent to one excess death per 25 admissions. The main limitation is the risk of confounding from unmeasured characteristics of stroke services.
Mortality outcomes after stroke are associated with the intensity of weekend staffing by registered nurses but not 7-d/wk ward rounds by stroke specialist physicians. The findings have implications for quality improvement and resource allocation in stroke care.
Please see later in the article for the Editors' Summary
Editors' Summary
In a perfect world, a patient admitted to hospital on a weekend or during the night should have as good an outcome as a patient admitted during regular working hours. But several observational studies (investigations that record patient outcomes without intervening in any way; clinical trials, by contrast, test potential healthcare interventions by comparing the outcomes of patients who are deliberately given different treatments) have reported that admission on weekends is associated with a higher mortality (death) rate than admission on weekdays. This “weekend effect” has led to calls for increased medical and nursing staff to be available in hospitals during the weekend and overnight to ensure that the healthcare provided at these times is of equal quality to that provided during regular working hours. In the UK, for example, “seven-day working” has been identified as a policy and service improvement priority for the National Health Service.
Why Was This Study Done?
Few studies have actually tested the relationship between patient outcomes and weekend physician or nurse staffing levels. It could be that patients who are admitted to hospital on the weekend have poor outcomes because they are generally more ill than those admitted on weekdays. Before any health system introduces potentially expensive increases in weekend staffing levels, better evidence that this intervention will improve patient outcomes is needed. In this prospective cohort study (a study that compares the outcomes of groups of people with different baseline characteristics), the researchers ask whether mortality after stroke is associated with weekend working by stroke specialist physicians and registered nurses. Stroke occurs when the brain's blood supply is interrupted by a blood vessel in the brain bursting (hemorrhagic stroke) or being blocked by a blood clot (ischemic stroke). Swift treatment can limit the damage to the brain caused by stroke, but of the 15 million people who have a stroke every year, about 6 million die within a few hours and another 5 million are left disabled.
What Did the Researchers Do and Find?
The researchers extracted clinical data on 56,666 patients who were admitted to stroke units in England over an 18-month period from a national stroke register. They obtained information on the characteristics and staffing levels of the stroke units from a biennial survey of hospitals admitting patients with stroke, and information on deaths among patients with stroke from the national register of deaths. A quarter of the patients were admitted on a weekend, almost half the stroke units provided stroke specialist physician rounds seven days per week, and the remainder provided rounds five days per week. After adjustment for factors that might have affected outcomes (“confounders”) such as stroke severity and the level of acute stroke care available in each stroke unit, there was no significant difference in mortality risk between patients admitted to a stroke unit with rounds seven days/week and patients admitted to a unit with rounds fewer than seven days/week. However, patients admitted on a weekend to a stroke unit with 1.5 nurses/ten beds had a 30-day mortality risk of 15.2%, whereas patients admitted to a unit with 3.0 nurses/ten beds had a mortality risk of 11.2%, a mortality risk difference equivalent to one excess death per 25 admissions.
What Do These Findings Mean?
These findings show that the provision of stroke specialist physician rounds seven days/week in stroke units in England did not influence the (weak) association between weekend admission for stroke and death recorded in this study, but mortality outcomes after stroke were associated with the intensity of weekend staffing by registered nurses. The accuracy of these findings may be affected by the measure used to judge the level of acute care available in each stroke unit and by residual confounding. For example, patients admitted to units with lower nursing levels may have shared other unknown characteristics that increased their risk of dying after stroke. Moreover, this study considered the impact of staffing levels on mortality only and did not consider other relevant outcomes such as long-term disability. Despite these limitations, these findings support the provision of higher weekend ratios of registered nurses to beds in stroke units, but given the high costs of increasing weekend staffing levels, it is important that controlled trials of different models of physician and nursing staffing are undertaken as soon as possible.
Additional Information
Please access these websites via the online version of this summary at
This study is further discussed in a PLOS Medicine Perspective by Meeta Kerlin
Information about plans to introduce seven-day working into the National Health Service in England is available; the 2013 publication “NHS Services—Open Seven Days a Week: Every Day Counts” provides examples of how hospitals across England are working together to provide routine healthcare services seven days a week; a “Behind the Headlines” article on the UK National Health Service Choices website describes a recent observational study that investigated the association between admission to hospital on the weekend and death, and newspaper coverage of the study's results; the Choices website also provides information about stroke for patients and their families, including personal stories
A US nurses' site includes information on the association of nurse staffing with patient safety
The US National Institute of Neurological Disorders and Stroke provides information about all aspects of stroke (in English and Spanish); its Know Stroke site provides educational materials about stroke prevention, treatment, and rehabilitation, including personal stories (in English and Spanish); the US National Institute of Health SeniorHealth website has additional information about stroke
The Internet Stroke Center provides detailed information about stroke for patients, families, and health professionals (in English and Spanish)
PMCID: PMC4138029  PMID: 25137386
8.  Family Caregiver Burden, Skills Preparedness, and Quality of Life in Non-Small-Cell Lung Cancer 
Oncology nursing forum  2013;40(4):337-346.
Describe burden, skills preparedness, and QOL for caregivers of patients with NSCLC, and describe how findings informed the development of a caregiver palliative care intervention that aims to reduce caregiver burden, improve caregiving skills, and promote self-care.
Descriptive, longitudinal.
One NCI-designated comprehensive cancer center in Southern California.
A total of 163 family members or friends who were 18 years or older and identified by patients as being the caregiver were accrued.
All eligible caregivers were approached by advance practice nurses (APNs) during a regularly scheduled patient clinic visit. Informed consent was obtained prior to study participation. Outcome measures were completed at baseline and repeated at 7, 12, 18, and 24 weeks. Descriptive statistics were computed for all variables, and one-way repeated measures Analysis of Variance (ANOVA) was used to test for change over time for all predictor and outcome variables.
Main Research Variables
Caregiver burden, skills preparedness, psychological distress, and QOL.
Caregivers were highly functional. Caregiver burden related to subjective demands increased significantly over time. Perceived skills preparedness was high at baseline, but decreased over time. Psychological distress was moderate but increased over time. Overall QOL was moderate at baseline, and decreased significantly over time. Psychological well-being had the worst QOL score.
Caregivers experienced high levels of caregiver burden, and report deteriorations in psychological well-being and overall QOL over time.
Implications for Nursing
Oncology nurses need to ensure that caregivers receive information that supports the caregiving role throughout the cancer trajectory.
PMCID: PMC3695406  PMID: 23803267
9.  The impact of sociodemographic factors on the utilisation of support services for family caregivers of elderly dependents – results from the German sample of the EUROFAMCARE study 
Objectives: As in nearly all European countries, demographic developments in Germany have led to both a relative and an absolute increase in the country’s elderly population. The care and support needed by these people is primarily provided by relatives or friends and close acquaintances within the home environment. The major challenges for society are to sustain, promote and support these informal resources. In order to achieve this, it is crucial that family caregivers are provided with situation-specific services that support them and relieve their burden of care. The major challenges for society are therefore to sustain, promote and support informal resources and to provide the opportunity for the use of services aimed at assisting and relieving the burden of family caregivers.
Methods: In the context of the EUROFAMCARE study, 1,003 family caregivers from Germany were interviewed at home about their experiences using a standardized questionnaire. Included in the study were primary caregivers providing at least four hours of personal care or support per week to a relative aged 65 years or older. Subjects solely providing financial support were excluded. In this paper, a linear regression analysis has been conducted to analyse impact of sociodemographic factors on the utilisation of support services.
Results: The family caregivers were 54 years on average (SD=13.4), 76% of them were female. The dependent elderly were 80 years on average (SD=8.3), and 69% of them were women. 60% of them were receiving long-term care insurance benefits. Use of support services aimed directly at family caregivers is very low. After including certain services aimed primarily at those in need of care but also often serving as a source of relief for family caregivers, the percentage of caregivers using support services increased slightly. Among sociodemographic characteristics, caregivers’ gender and education level have the greatest influence on services use. Other influential factors are caregivers’ perception of their caregiving burden and their assessment of the dependent family member’s need for assistance and support.
PMCID: PMC3488802  PMID: 23133500
health services utilization; family caregivers; enabling factors; predisposing factors; need factors; behavioral model of health services use
10.  Informal Caregivers Assisting People with Multiple Sclerosis 
International Journal of MS Care  2011;13(4):177-187.
The objective of this study was to identify characteristics of informal caregivers, caregiving, and people with multiple sclerosis (MS) receiving this assistance that are associated with the strength of the care-giver/care recipient relationship. Data were collected in a national survey of informal caregivers and analyzed using an ordered logistic regression model to identify factors associated with caregiver perceptions of the strength of the relationship with the person with MS. The overall health of the person with MS was significantly associated with caregiver perceptions that providing assistance strengthened the caregiver/care recipient relationship, with poor health having a negative impact on the relationship. A spousal relationship between the caregiver and the person with MS was associated with significantly lower perceptions of a strengthened relationship. Conversely, caregiver perceptions that MS symptoms interfered with the independence of the person with MS in daily life were associated with caregiver perceptions of a strengthened relationship. Longer duration of caregiving and more hours per week spent providing assistance also were associated with a stronger relationship. In contrast, we found a significant negative association between caregiver perceptions that assisting the person with MS was burdensome and the strength of the relationship. Similarly, higher levels of education among caregivers tended to have a significantly negative impact on the caregiver/care recipient relationship. Our findings highlight the importance of addressing the needs and concerns of spousal caregivers. Health professionals who treat informal caregivers, as well as those treating people with MS, should be sensitive to the impact caregiving has on caregivers, especially spouses providing assistance.
PMCID: PMC3882961  PMID: 24453723
11.  Intervention to improve social and family support for caregivers of dependent patients: ICIAS study protocol 
BMC Family Practice  2014;15:53.
Despite the existence of formal professional support services, informal support (mainly family members) continues to be the main source of eldercare, especially for those who are dependent or disabled. Professionals on the primary health care are the ideal choice to educate, provide psychological support, and help to mobilize social resources available to the informal caregiver.
Controversy remains concerning the efficiency of multiple interventions, taking a holistic approach to both the patient and caregiver, and optimum utilization of the available community resources. .For this reason our goal is to assess whether an intervention designed to improve the social support for caregivers effectively decreases caregivers burden and improves their quality of life.
Design: Controlled, multicentre, community intervention trial, with patients and their caregivers randomized to the intervention or control group according to their assigned Primary Health Care Team (PHCT).
Study area: Primary Health Care network (9 PHCTs).
Study participants: Primary informal caregivers of patients receiving home health care from participating PHCTs.
Sample: Required sample size is 282 caregivers (141 from PHCTs randomized to the intervention group and 141 from PHCTs randomized to the control group.
Intervention: a) PHCT professionals: standardized training to implement caregivers intervention. b) Caregivers: 1 individualized counselling session, 1 family session, and 4 educational group sessions conducted by participating PHCT professionals; in addition to usual home health care visits, periodic telephone follow-up contact and unlimited telephone support.
Control: Caregivers and dependent patients: usual home health care, consisting of bimonthly scheduled visits, follow-up as needed, and additional attention upon request.
Data analysis
Dependent variables: Caregiver burden (short-form Zarit test), caregivers’ social support (Medical Outcomes Study), and caregivers’ reported quality of life (SF-12)
Independent variables: a) Caregiver: sociodemographic data, Goldberg Scale, Apgar family questionnaire, Holmes and Rahe Psychosocial Stress Scale, number of chronic diseases. b) Dependent patient: sociodemographic data, level of dependency (Barthel Index), cognitive impairment (Pfeiffer test).
If the intervention intended to improve social and family support is effective in reducing the burden on primary informal caregivers of dependent patients, this model can be readily applied throughout usual PHCT clinical practice.
Trial registration
Clinical trials registrar: NCT02065427
PMCID: PMC4230240  PMID: 24666438
Caregiver burden; Social support; Primary health care
12.  Experiences of Living and Dying With COPD 
Executive Summary
In July 2010, the Medical Advisory Secretariat (MAS) began work on a Chronic Obstructive Pulmonary Disease (COPD) evidentiary framework, an evidence-based review of the literature surrounding treatment strategies for patients with COPD. This project emerged from a request by the Health System Strategy Division of the Ministry of Health and Long-Term Care that MAS provide them with an evidentiary platform on the effectiveness and cost-effectiveness of COPD interventions.
After an initial review of health technology assessments and systematic reviews of COPD literature, and consultation with experts, MAS identified the following topics for analysis: vaccinations (influenza and pneumococcal), smoking cessation, multidisciplinary care, pulmonary rehabilitation, long-term oxygen therapy, noninvasive positive pressure ventilation for acute and chronic respiratory failure, hospital-at-home for acute exacerbations of COPD, and telehealth (including telemonitoring and telephone support). Evidence-based analyses were prepared for each of these topics. For each technology, an economic analysis was also completed where appropriate. In addition, a review of the qualitative literature on patient, caregiver, and provider perspectives on living and dying with COPD was conducted, as were reviews of the qualitative literature on each of the technologies included in these analyses.
The Chronic Obstructive Pulmonary Disease Mega-Analysis series is made up of the following reports, which can be publicly accessed at the MAS website at:
Chronic Obstructive Pulmonary Disease (COPD) Evidentiary Framework
Influenza and Pneumococcal Vaccinations for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Smoking Cessation for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Community-Based Multidisciplinary Care for Patients With Stable Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Pulmonary Rehabilitation for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Long-Term Oxygen Therapy for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Noninvasive Positive Pressure Ventilation for Acute Respiratory Failure Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Noninvasive Positive Pressure Ventilation for Chronic Respiratory Failure Patients With Stable Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Hospital-at-Home Programs for Patients With Acute Exacerbations of Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Home Telehealth for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Cost-Effectiveness of Interventions for Chronic Obstructive Pulmonary Disease Using an Ontario Policy Model
Experiences of Living and Dying With COPD: A Systematic Review and Synthesis of the Qualitative Empirical Literature
For more information on the qualitative review, please contact Mita Giacomini at:
For more information on the economic analysis, please visit the PATH website:
The Toronto Health Economics and Technology Assessment (THETA) collaborative has produced an associated report on patient preference for mechanical ventilation. For more information, please visit the THETA website:
Objective of Analysis
The objective of this analysis was to review empirical qualitative research on the experiences of patients with chronic obstructive pulmonary disease (COPD), informal caregivers (“carers”), and health care providers—from the point of diagnosis, through daily living and exacerbation episodes, to the end of life.
Clinical Need and Target Population
Qualitative empirical studies (from social sciences, clinical, and related fields) can offer important information about how patients experience their condition. This exploration of the qualitative literature offers insights into patients’ perspectives on COPD, their needs, and how interventions might affect their experiences. The experiences of caregivers are also explored.
Research Question
What do patients with COPD, their informal caregivers (“carers”), and health care providers experience over the course of COPD?
Research Methods
Literature Search
Search Strategy
Literature searches for studies published from January 1, 2000, to November 2010 were performed on November 29, 2010, using OVID MEDLINE; on November 26, 2010, using ISI Web of Science; and on November 28, 2010, using EBSCO Cumulative Index to Nursing and Allied Health Literature (CINAHL). Titles and abstracts were reviewed by a single reviewer and, for those studies meeting the eligibility criteria, full-text articles were obtained. One additional report, highly relevant to the synthesis, appeared in early 2011 during the drafting of this analysis and was included post hoc.
Inclusion Criteria
English-language full reports
studies published between January 1, 2000, and November 2010
primary qualitative empirical research (using any descriptive or interpretive qualitative methodology, including the qualitative component of mixed-methods studies) and secondary syntheses of primary qualitative empirical research
studies addressing any aspect of the experiences of living or dying with COPD from the perspective of persons at risk, patients, health care providers, or informal carers; studies addressing multiple conditions were included if COPD was addressed explicitly
Exclusion Criteria
studies addressing topics other than the experiences of living or dying with COPD from the perspective of persons at risk, patients, health care providers, or informal carers
studies labelled “qualitative” but not using a qualitative descriptive or interpretive methodology (e.g., case studies, experiments, or observational analysis using qualitative categorical variables)
quantitative research (i.e., using statistical hypothesis testing, using primarily quantitative data or analyses, or expressing results in quantitative or statistical terms)
studies that did not pose an empirical research objective or question, or involve the primary or secondary analysis of empirical data
Outcomes of Interest
qualitative descriptions and interpretations (narrative or theoretical) of personal and social experiences of COPD
Summary of Findings
Experiences at Diagnosis
Patients typically seek initial treatment for an acute episode rather than for chronic early symptoms of COPD.
Many patients initially misunderstand terms such as COPD, chronic obstructive pulmonary disease, or exacerbation.
Patients may not realize that COPD is incurable and fatal; some physicians themselves do not consider early COPD to be a fatal disease.
Smokers may not readily understand or agree with the idea that smoking caused or worsens their COPD. Those who believe there is a causal link may feel regret or shame.
Experiences of Living Day to Day
COPD patients experience alternating good days and bad days. A roller-coaster pattern of ups and downs becomes apparent, and COPD becomes a way of life.
Patients use many means (social, psychological, medical, organizational) to control what they can, and to cope with what they cannot. Economic hardship, comorbidities, language barriers, and low health literacy can make coping more difficult.
Increasing vulnerability and unpredictable setbacks make patients dependent on others for practical assistance, but functional limitations, institutional living or self-consciousness can isolate patients from the people they need.
For smokers, medical advice to quit can conflict with increased desire to smoke as a coping strategy.
Many of the factors that isolate COPD patients from social contact also isolate them from health care.
Experiences of Exacerbations
Patients may not always attribute repeated exacerbations to advancing disease, instead seeing them as temporary setbacks caused by activities, environmental factors, faltering self-management, or infection.
Lack of confidence in community-based services leads some patients to seek hospital admission, but patients also feel vulnerable when hospitalized. They may feel dependent on others for care or traumatized by hospital care routines.
Upon hospital discharge following an exacerbation, patients may face new levels of uncertainty about their illness, prognosis, care providers, and supports.
Experiences of the End of Life
Patients tend to be poorly informed about the long-term prognosis of COPD and what to expect toward the end of life; this lack of understanding impairs quality of life as the disease progresses.
As the end of life approaches, COPD patients face the usual challenges of daily living, but in a context of increasing exacerbations and deepening dependency. Activities and mobility decrease, and life may become confined.
Some clinicians have difficulty identifying the beginning of “the end of life,” given the unpredictable course of COPD. Long-term physician-patient relationships, familiarity and understanding, trust, good communication skills, sensitivity, and secure discussion settings can help facilitate end-of-life discussions.
Divergent meanings and goals of palliative care in COPD lead to confusion about whether such services are the responsibility of home care, primary care, specialty care, or even critical care. Palliative end-of-life care may not be anticipated prior to referral for such care. A palliative care referral can convey the demoralizing message that providers have “given up.”
Experiences of Carers
Carers’ challenges often echo patients’ challenges, and include anxiety, uncertainty about the future, helplessness, powerlessness, depression, difficulties maintaining employment, loss of mobility and freedoms, strained relationships, and growing social isolation.
Carers feel pressured by their many roles, struggling to maintain patience when they feel overwhelmed, and often feeling guilty about not doing enough.
Carers often face their own health problems and may have difficulty sustaining employment.
Synthesis: A Disease Trajectory Reflecting Patient Experiences
The flux of needs in COPD calls for service continuity and flexibility to allow both health care providers and patients to respond to the unpredictable yet increasing demands of the disease over time.
PMCID: PMC3384365  PMID: 23074423
13.  Risk and protective factors for relapse among Individuals with Schizophrenia: A Qualitative Study in Dar es Salaam, Tanzania 
BMC Psychiatry  2014;14(1):240.
Relapse in people with schizophrenia is a major challenge for mental health service providers in Tanzania and other countries. Approximately 10% of people with schizophrenia are re-admitted due to relapse at Muhimbili National Hospital (MNH) Psychiatric Unit each month. Relapse brings about negative effects and it results in a huge burden to patients, their families, the mental health sector and the country’s economy. So far no study has been done to address relapse in Tanzania. The purpose of the study was to explore perspectives on risk and protective factors influencing relapse of people with schizophrenia and their caregivers attending Muhimbili National Hospital Psychiatric Out-patient Department, Dar es Salaam, Tanzania.
A qualitative study was conducted, involving in-depth interviews of seven people with schizophrenia who are out-patients and their seven family caregivers at MNH. Purposive sampling procedure was used to select participants for the study. Audio recorded in-depth interviews in Swahili language were conducted with all study participants. The recorded information was transcribed and analyzed using NVivo 9 computer assisted qualitative data analysis software.
Personal risk and protective factors for relapse, environmental risk and protective factors for relapse and suggestions to reduce relapse were the main themes that emerged from this study. People with schizophrenia and their caregivers (all of whom were relatives) perceived non adherence to antipsychotic medication as a leading risk factor of relapse; other risks included poor family support, stressful life events and substance use. Family support, adherence to antipsychotic medication, employment and religion were viewed as protective factors. Participants suggested strengthening mental health psycho-education sessions and community home visits conducted by mental health nurses to help reduce relapse. Other suggestions included strengthening the nurse-patient therapeutic relationship in provision of mental health care.
This study calls for improvement in mental health care service delivery to individuals with schizophrenia. Establishing a curricular in mental health nursing that aims to produce competent mental health nurse force would improve nursing practice in mental health care service delivery.
PMCID: PMC4169829  PMID: 25168715
Relapse; Schizophrenia; Caregivers; Risk factors; Protective factors; Tanzania; Africa
14.  The effect of a supportive educational program based on COPE model on caring burden and quality of life in family caregivers of women with breast cancer 
The family caregivers of the people with cancer such as breast cancer experience a decrease in their quality of life and an increase of their caring burden. In most of the cases, the researchers consider the quality of life and physical and psychological problems in patients with cancer and pay less attention to the family caregivers. To reduce the caring burden imposed to the caregivers and improve their quality of life, supportive strategies such as problem solving can be used. These interventions may have benefits for the caregivers although the research results are contradictory. The aim of this research was to determine the effect of a supportive educational program, based on COPE model, which focuses on creativity, optimism, planning, and expert information on individuals, on the caring burden and quality of life in the family caregivers of women with breast cancer.
Materials and Methods:
The present study is a clinical trial, which was conducted in Seyed-Al-Shohada Hospital of Isfahan University of Medical Sciences and a private center of chemotherapy in 2012. In this study, researchers investigated the effect of a supportive educational program based on COPE model on the caring burden and quality of life in the family caregivers of women with breast cancer. This supportive educational program included two hospital visits and two telephone sessions based on COPE model for 9 days. A total of 64 patients were selected based on the inclusion criteria and randomly assigned into two groups. Data were collected by use of Caregiver Quality of Life Index-Cancer (CQOL-C), World Health Organization Quality of Life — Bref(WHOQOL-Bref)_, and Zarit caring burden at the beginning of the intervention and a month after the intervention.
The results showed that in the experimental group, the mean score of physical, mental, spiritual, environmental domains and overall quality of life in the family caregivers was significantly increased compared to the control group, but there was no change in the social domain of quality of life in the two groups. In the experimental group, the mean score of caring burden among the caregivers was significantly decreased compared to the control group.
Results of the present study suggested that a supportive educational program can improve physical, mental, spiritual, environmental domains and overall quality of life. It can also decrease the caring burden in the family caregivers of women with breast cancer. Further studies are needed to evaluate the impact of these interventions on quality of life and caring burden in the family caregivers of women with breast cancer undergoing other cancer treatments.
PMCID: PMC4020019  PMID: 24834079
Breast cancer; burden; COPE; education; family caregiver; Iran; nursing; quality of life; supportive
15.  Informational needs and related problems of family caregivers of heart failure patients: A qualitative study 
Heart failure is incurable disease and patients often have an ongoing decline once diagnosed. The symptoms of heart failure may impair the ability of patient to perform activities of daily living. As heart failure progresses, patients normally increase their reliance on family caregivers.
This paper explored the informational needs and related problems of family caregivers of heart failure patients as a part of the findings of a study exploring experiences of family caregivers in the caregiving situation.
Setting and Design:
Using a qualitative design, 19 family caregivers from three educational hospitals in Isfahan, Iran, were recruited.
Materials and Methods:
Participants were selected by purposive sampling. Data were collected through semi-structured interviews. Interviews were transcribed verbatim and analyzed concurrently.
Four major themes were emerged from the analysis of the transcripts: “Lack of care-related knowledge”, “Inaccessibility to responsible source of information”, “Lack of guidance from healthcare team” and “caring with ambiguity due to unpredictable nature of the disease”. Caregivers believed that they did not have the basic knowledge related to disease and medication administration. They received little guidance and support from the health care team on the caregiving roles. They experienced high level of ambiguity and stress in caregiving tasks due to lack of care-related knowledge and unpredictable nature of disease.
The care, which was performed by the caregivers of HF patients, is beyond of their knowledge, capabilities, and resources. Nurses and other healthcare providers can use the findings of this study to develop effective educational and supportive programs to facilitate these needs.
PMCID: PMC4275616  PMID: 25540786
Family caregivers; heart failure; information needs; Iran; nursing
16.  Factors associated with caregiver burden in a child and adolescent psychiatric facility in Lagos, Nigeria: a descriptive cross sectional study 
BMC Pediatrics  2011;11:110.
Definitions of burden of care stress the effect of the patient's mental illness on the family. There are generally very few studies in this environment on caregiver burden in child/adolescent mental ill-health. This study aimed to identify patient and caregiver characteristics that are associated with caregiver burden.
Caregivers of patients attending the Child and Adolescent Clinic of the Neuropsychiatric Hospital, Yaba, Lagos [n = 155] were consecutively recruited over a one-month period. The caregivers were administered a sociodemographic questionnaire, the General Health Questionnaire, Zarit Burden Interview, and the Columbia Impairment Scale. Scoring on the Children's Global Assessment Scale was done by clinicians.
Most caregivers observed in this study were females (80.5%), with mothers of the patients accounting for 78% of all the caregivers. A higher percentage of the patients were males (52.8%). Moderate to severe/severe burden was recorded among 25.2% of caregivers. Factors associated with caregiver burden were patient's level of functioning [r = 0.489, p < 0.001], psychiatric morbidity in the caregiver [r = 0.709, p < 0.001], level of impairment as assessed by the caregiver [r = 0.545, p < 0.001], and child's level of education [t = 3.274, p = 0.001]. Each one independently predicted caregiver burden.
The study reveals a high level of burden among the caregivers of children and adolescents with mental health problems.
PMCID: PMC3252249  PMID: 22151428
17.  Perceptions of burden of caregiving by informal caregivers of cancer patients attending University of Calabar Teaching Hospital, Calabar, Nigeria 
Cancer care is devastating to families. This research studied the informal caregivers’ perceptions of burden of caregiving to cancer patients attending University of Calabar Teaching Hospital, Calabar.
The research adopted a cross-sectioned descriptive design and 210 caregivers providing care to advanced cancer patients were purposively selected. Data were collected using a researcher developed questionnaire and standardized Zarit Burden Interview scale (ZBIS). Data collected were analysed using descriptive and chi-square statistics with the help of SPSS 18.0 and PAS 19.0 softwares.
The results indicated that the caregivers were in their youthful and active economic age, dominated by females, Christians, spouses, partners and parents. The burden levels experienced by the caregivers were as follows: severe (46.2%), moderate (36.2%) and trivial of no burden (17.6%). The forms of burden experienced were physical (43.4%), psychological (43.3%), financial (41.1%) and social (46.7%), quite frequently and nearly always. Psychological and social forms of burden had the highest weighted score of 228 in terms of magnitude of burden. The result further showed that there was a significant (P = 0.001) and inverse association between caregivers’ burden and the care receivers’ functional ability. The level of burden also increased significantly (P = 0.000) with the duration of care, while there was also a significant (P = 0.01) relationship between caregivers’ experience of burden and their desire to continue caregiving.
Caregiving role can be enhanced by provision of interventions such as formal education programme on cancer caregiving, oncology, home services along side with transmural care.
PMCID: PMC4236844  PMID: 25419297
Perceptions of burden; informal caregivers; cancer patients; caregiving; Nigeria
18.  The indispensable intermediaries: a qualitative study of informal caregivers’ struggle to achieve influence at and after hospital discharge 
The care policy and organization of the care sector is shifting to accommodate projected demographic changes and to ensure a sustainable model of health care provision in the future. Adult children and spouses are often the first to assume care giving responsibilities for older adults when declining function results in increased care needs. By introducing policies tailored to enabling family members to combine gainful employment with providing care for older relatives, the sustainability of the future care for older individuals in Norway is more explicitly placed on the family and informal caregivers than previously. Care recipients and informal caregivers are expected to take an active consumer role and participate in the care decision-making process. This paper aims to describe the informal caregivers’ experiences of influencing decision-making at and after hospital discharge for home-bound older relatives.
This paper reports findings from a follow-up study with an exploratory qualitative design. Qualitative telephone interviews were conducted with 19 informal caregivers of older individuals discharged from hospital in Norway. An inductive thematic content analysis was undertaken.
Informal caregivers take on comprehensive all-consuming roles as intermediaries between the care recipient and the health care services. In essence, the informal caregivers take the role of the active participant on behalf of their older relative. They describe extensive efforts struggling to establish dialogues with the “gatekeepers” of the health care services. Achieving the goal of the best possible care for the care recipient seem to depend on the informal caregivers having the resources to choose appropriate strategies for gaining influence over decisions.
The care recipients’ extensive frailty and increasing dependence on their families coupled with the complexity of health care services contribute to the perception of the informal caregivers’ indispensable role as intermediaries. These findings accentuate the need to further discuss how frail older individuals and their informal caregivers can be supported and enabled to participate in decision-making regarding care arrangements that meet the care recipient’s needs.
PMCID: PMC4119054  PMID: 25078610
Informal caregivers; Family; Consumer participation; Aged 80+; Informal help; Formal help; Home health care services
19.  Differences in COPD Patient Care by Primary Family Caregivers: An Age-Based Study 
PLoS ONE  2014;9(9):e107870.
Because Taiwan has the fastest aging rate among developed countries, care for the elderly is becoming more prominent in the country. Primary family caregivers play an important role in patient health and health promotion behavior. Chronic obstructive pulmonary disease (COPD), an age-related disease, is a major public health problem with high morbidity and mortality and can be a long-term burden for family members; however, little attention has been given to the differences in COPD care between elder caregivers and other caregivers. This study aimed to investigate the differences between elder family caregivers and non-elder family caregivers caring for COPD patients in Taiwan, including caring behavior, caregiver response, and caring knowledge.
This cross-sectional study was conducted between March 2007 and January 2008; 406 primary family caregivers of COPD patients from the thoracic outpatient departments of 6 hospitals in north-central Taiwan were recruited to answer questionnaires measuring COPD characteristics, care behavior, caregiver response, and COPD knowledge. All questionnaires, which addressed caregiver knowledge, care behaviors, and care reactions, were shown to have acceptable validity and reliability, and the data were analyzed using univariate and generalized linear model techniques.
The elder caregivers group had 79 participants, and the non-elder caregivers comprised 327 participants. The COPD-related knowledge scale results were positively correlated with the family caregiver caring behavior scale, suggesting that better COPD-related knowledge among family caregivers may result in improved caring behavior. After adjusting for all possible confounding factors, the elder caregivers had significantly lower COPD-related knowledge than the non-elder caregivers (P<0.001). However, there were no significant differences in the family caregiver caring behavior scale or the caregiver reaction assessment scale between the two groups.
Elder family caregivers require increased education regarding medications and preventive care in COPD patient care.
PMCID: PMC4176017  PMID: 25250897
20.  Patient, informal caregiver and care provider acceptance of a hospital in the home program in Ontario, Canada 
Hospital in the home programs have been implemented in several countries and have been shown to be safe substitutions (alternatives) to in-patient hospitalization. These programs may offer a solution to the increasing demands made on tertiary care facilities and to surge capacity. We investigated the acceptance of this type of care provision with nurse practitioners as the designated principal home care providers in a family medicine program in a large Canadian urban setting.
Patients requiring hospitalization to the family medicine service ward, for any diagnosis, who met selection criteria, were invited to enter the hospital in the home program as an alternative to admission. Participants in the hospital in the home program, their caregivers, and the physicians responsible for their care were surveyed about their perceptions of the program. Nurse practitioners, who provided care, were surveyed and interviewed.
Ten percent (104) of admissions to the ward were screened, and 37 patients participated in 44 home hospital admissions. Twenty nine patient, 17 caregiver and 38 provider surveys were completed. Most patients (88%–100%) and caregivers (92%–100%) reported high satisfaction levels with various aspects of health service delivery. However, a significant proportion in both groups stated that they would select to be treated in-hospital should the need arise again. This was usually due to fears about the safety of the program. Physicians (98%–100%) and nurse practitioners also rated the program highly. The program had virtually no negative impact on the physician workload. However nurse practitioners felt that the program did not utilize their full expertise.
Provision of hospital level care in the home is well received by patients, their caregivers and health care providers. As a new program, investment in patient education about program safety may be necessary to ensure its long term success. A small proportion of hospital admissions were screened for this program. Appropriate dissemination of program information to family physicians should help buy-in and participation. Nurse practitioners' skills may not be optimally utilized in this setting.
PMCID: PMC2020484  PMID: 17705866
21.  Caring for Caregivers of People Living with HIV in the Family: A Response to the HIV Pandemic from Two Urban Slum Communities in Pune, India 
PLoS ONE  2012;7(9):e44989.
In low resource settings, the vast majority of ‘Person/people Living with HIV’ (PLHIV/s) and inadequate healthcare delivery systems to meet their treatment and care needs, caregivers play a vital role. Home based caregivers are often unrecognized with limited AIDS policies and programs focusing on them. We explored the perceptions and norms regarding care being provided by family caregivers of PLHIVs in India.
A community based qualitative study to understand the issues pertaining to home based care for PLHIV was conducted in urban settings of Pune city, in Maharashtra, India. Eight Focus Group Discussions (FGDs) among men, women and peer educators were carried out. A total of 44 in-depth Interviews (IDIs) with PLHIVs (20) and their caregivers (24), were conducted using separate guides respectively. Data was analyzed thematically.
Home based care was perceived as economically viable option available for PLHIVs. ‘Care’ comprised of emotional, adherence, nursing and financial support to PLHIV. Home based care was preferred over hospital based care as it ensured confidentiality and patient care without hampering routine work at home. Women emerged as more vital primary caregivers compared to men. Home based care for men was almost unconditional while women had no such support. The natal family of women also abandoned. Their marital families seemed to provide support. Caregivers voiced the need for respite care and training.
Gender related stigma and discrimination existed irrespective of women being the primary family caregivers. The support from marital families indicates a need to explore care and support issues at natal and marital homes of the women living with HIV respectively. Home based care training and respite care for the caregivers is recommended. Gender sensitive interventions addressing gender inequity and HIV related stigma should be modeled while designing interventions for PLHIVs and their family caregivers.
PMCID: PMC3441662  PMID: 23028725
22.  Children staying in hospital: a research on psychological stress of caregivers 
Having a child hospitalized is a stressful event for parents. Previous studies have found increased stress in families with children affected by different kinds of pathologies, and analyzed disease related objective variables producing stress. However, most of these studies recruited caregivers of children with chronic or serious illnesses, and focused on evaluation of objective environmental stressors and did not consider subjective "perception" of stress. The aim of this study was to investigate perception of acute stress in caregivers taking care of children without serious physical damage that were hospitalized for short periods. Moreover, some variables, such as recreational and school services offered to children, influencing perception of cognitive, physiological and behavioral state relating to the sensation of "being stressed" were analyzed.
This study was realized with a sample of caregivers of children hospitalized for mild acute diseases. Research was conducted using two standardized tests, PSM (Psychological Stress Measure) and STAI (State Trait Anxiety Inventory), whose characteristics of reliability and validity had been successfully established.
Present data showed that caregivers of hospitalized children perceived high levels of stress and anxiety. Perception of stress was influenced by the degree of kindred with patients, length of hospitalization, and, notably, participation in some of the activities offered to children, mainly school services.
Findings showed that child hospitalization is a stressful event for caregivers, even if hospitalization is for middle and transient pathologies. Perception of stress was influenced by length of hospitalization, and by degree of kindred. Findings even suggest that some services offered to children can modulate caregivers' perception of stress and impact of hospitalization. Caregivers whose children used school services describe themselves as less irritable and with higher emotional control compared to other caregivers. Considering the importance of education in a child's life, the possibility to continue school activities helped caregivers to feel less under pressure. In the light of this finding, amelioration of scholastic activities in pediatric departments may represent a critical point in order to provide a more agreeable hospital stay for children and their caregivers and, as a consequence, improve family involvement in care management.
PMCID: PMC2883985  PMID: 20500854
23.  Predictors of Depressive Symptoms in Caregivers of Patients with Heart Failure 
Millions of family members deliver informal care and support to patients with heart failure (HF). Caregivers of patients with HF suffer from depressive symptoms, but factors associated with depressive symptoms are unknown. The purposes of this study were (1) to examine differences between caregivers with and without depressive symptoms in patients’ characteristics and caregivers’ functional status, caregiving burden (time devoted to caregiving, difficulty of caregiving tasks, and overall perceived caregiving distress), and perceived control; and (2) to determine predictors of depressive symptoms of caregivers.
A total of 109 caregivers (mean age of 57 years; spousal caregiver 79%) and patients with HF participated in this study. Depressive symptoms, perceived control, and functional status of both patients and caregivers were assessed using the Beck Depression Inventory-II (BDI-II), the Control Attitudes Scale-Revised, and the Duke Activity Status Index, respectively. Caregivers’ burden (time and difficulty of caregiving tasks and burden) were assessed using the Oberst Caregiving Burden Scale, and the Zarit Burden Interview.
The 27.5% of HF caregivers with depressive symptoms (BDI-II ≥ 14) had poorer functional status, lower perceived control, higher perceived caregiving distress, experienced more caregiving difficulty and spent more time in caregiving tasks than caregivers without depressive symptoms. Controlling for age and gender in a multiple regression, caregivers’ own functional disability (sβ = -.307, P < .001), perceived control (sβ = -.304, P < .001), and caregiver burden (sβ =.316, P = .002) explained 45% of the variance in caregivers’ depressive symptoms. Patients’ NYHA class and functional status did not predict caregivers’ depressive symptoms.
Caregivers’ poor functional status, overall perception of caregiving distress, and perceived control were associated with depressive symptoms. Depressed caregivers of patients with HF may benefit from interventions that improve caregivers’ perceived control, address the caregiving burden and improve or assist with caregivers’ functional status.
PMCID: PMC2924771  PMID: 20714239
Depressive symptoms; Family caregivers; Heart failure; Psychological stress
24.  Health Information Technology to Facilitate Communication Involving Health Care Providers, Caregivers, and Pediatric Patients: A Scoping Review 
Pediatric patients with health conditions requiring follow-up typically depend on a caregiver to mediate at least part of the necessary two-way communication with health care providers on their behalf. Health information technology (HIT) and its subset, information communication technology (ICT), are increasingly being applied to facilitate communication between health care provider and caregiver in these situations. Awareness of the extent and nature of published research involving HIT interventions used in this way is currently lacking.
This scoping review was designed to map the health literature about HIT used to facilitate communication involving health care providers and caregivers (who are usually family members) of pediatric patients with health conditions requiring follow-up.
Terms relating to care delivery, information technology, and pediatrics were combined to search MEDLINE, EMBASE, and CINAHL for the years 1996 to 2008. Eligible studies were selected after three rounds of duplicate screening in which all authors participated. Data regarding patient, caregiver, health care provider, HIT intervention, outcomes studied, and study design were extracted and maintained in a Microsoft Access database. Stage of research was categorized using the UK’s Medical Research Council (MRC) framework for developing and evaluating complex interventions. Quantitative and qualitative descriptive summaries are presented.
We included 104 eligible studies (112 articles) conducted in 17 different countries and representing 30 different health conditions. The most common conditions were asthma, type 1 diabetes, special needs, and psychiatric disorder. Most studies (88, 85%) included children 2 to 12 years of age, and 73 (71%) involved home care settings. Health care providers operated in hospital settings in 96 (92%) of the studies. Interventions featured 12 modes of communication (eg, Internet, intranets, telephone, video conferencing, email, short message service [SMS], and manual downloading of information) used to facilitate 15 categories of functions (eg, support, medication management, education, and monitoring). Numerous patient, caregiver, and health care relevant outcomes have been measured. Most outcomes concerned satisfaction, use, usability, feasibility, and resource use, although behavior changes and quality of life were also reported. Most studies (57 studies, 55%) were pilot phase, with a lesser proportion of development phase (24 studies, 23%) and evaluation phase (11 studies, 11%) studies. HIT interventions addressed several recurring themes in this review: establishing continuity of care, addressing time constraints, and bridging geographical barriers.
HIT used in pediatric care involving caregivers has been implemented differently in a range of disease settings, with varying needs influencing the function, form and synchronicity of information transfer. Although some authors have followed a phased approach to development, evaluation and implementation, a greater emphasis on methodological standards such as the MRC guidance for complex interventions would produce more fruitful programs of development and more useful evaluations in the future. This review will be especially helpful to those deciding on areas where further development or research into HIT for this purpose may be warranted.
PMCID: PMC2956233  PMID: 20562092
Infant; child; adolescent; physician patient relations; communication; medical informatics; applications; computers; Internet
25.  Influence of Caregiving on Lifestyle and Psychosocial Risk Factors Among Family Members of Patients Hospitalized with Cardiovascular Disease 
Few data have evaluated the relationship between caregiving and cardiovascular disease (CVD) risk.
The purpose of this study was to determine the prevalence and predictors of caregiver strain and to evaluate the association between caregiving and CVD lifestyle and psychosocial risk factors among family members of recently hospitalized CVD patients.
Design and Participants
Participants in the NHLBI Family Intervention Trial for Heart Health (FIT Heart) who completed a 6-month follow-up were included in this analysis (n = 263; mean age 50 ± 14 years, 67% female, 29% non-white).
At 6 months, standardized information was collected regarding depression, social support, and caregiver strain (high caregiver strain = ≥7). Information on lifestyle risk factors, including obesity, physical activity, and diet, were also collected using standardized questionnaires. Logistic regression models on the association between caregiving and CVD risk factors were adjusted for significant confounders.
The prevalence of serving as a CVD patient’s primary caregiver or caring for the patient most of the time was 50% at 6 months. Caregivers (primary/most) were more likely to be women (81% vs 19%, p < .01), married/living with someone (p < .01), >50 years old (p < .01), have ≤ high school education (p < .01), be unemployed (p < .01), get less physical activity (p < .01), and have a higher waist circumference (p < .01) than non-caregivers (some/occasional/none). Mean caregiver strain scores were significantly higher among those with depressive symptoms (p < .01) and low social support (p < .01) in a multivariable adjusted model.
Caregivers of cardiac patients may be at increased risk themselves for CVD morbidity and mortality compared to non-caregivers due to suboptimal lifestyle and psychosocial risk factors.
PMCID: PMC2607516  PMID: 18998190
cardiovascular disease; caregiver; prevention; depression

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