Behavioral changes in patients with amyotrophic lateral sclerosis (ALS) mirror those found in frontotemporal dementia (FTD). Considering the high rate of neuropsychiatric symptoms found in ALS patients, this paper examines whether caregiver burden is associated with behavioral changes over and above the physical disability of patients with ALS, and if the presence of caregivers’ depression, anxiety and stress also impacts on caregiver burden.
140 caregivers of patients with ALS participated in a postal survey investigating patients’ neuropsychiatric symptoms (Cambridge Behaviour Inventory Revised CBI-R), motor function (Amyotrophic Lateral Sclerosis Functional Rating Scale Revised - ALSFRS-R), caregiver burden (Zarit Burden Interview), and caregiver mood (Depression, Anxiety and Stress Scale- DASS21). Seventy four percent of them were caregivers of patients with limb onset and 25.7% were caregivers of patients with bulbar onset.
Moderate to severe behavioral changes were reported in 10-40% of patients with ALS. The levels of depression, anxiety and stress in the caregivers reached 20%. Burden was high in 48% of the caregivers. The strongest predictor of high caregiver burden was ALS patients’ abnormal behavior rather than physical disability, with an odds ratio of 1.4, followed by caregivers’ stress.
Our study has identified that behavioral changes (e.g. disinhibition, impulsivity) and caregiver stress have greater impact on caregiver burden than level and pattern of physical disability.
ALS; Behavioral changes; FTD; Caregiver burden
We studied the level of distress in caregivers of patients with recently diagnosed multiple sclerosis (MS), and their relation to clinical characteristics.
Caregivers of patients with MS and Parkinson's disease completed measures of distress and quality of life. MS patients underwent neurological, neuropsychiatric and neuropsychological examinations. Multivariate regression analyses were used to explore the relationship between patient variables and caregiver distress.
Caregivers of patients with MS experienced high levels of distress and reduced quality of life related to caregiving. The level of distress was similar to that reported by elderly spouses of patients with longstanding Parkinson's disease. Psychiatric symptoms and cognitive impairment in patients with MS were associated with caregiver's distress and quality of life, even after controlling for level of disability (all p values <0.01). Patients' physical impairment was associated with caregiver distress, but not with caregiver quality of life.
Caregivers of patients with MS experience high levels of distress and reduced quality of life. Psychiatric symptoms and cognitive impairment contributed significantly to caregiver distress, over and above the effect of disability due to neurological symptoms.
Background: Amyotrophic lateral sclerosis (ALS) and its devastating neurodegenerative consequences have an inevitably psychological impact on patients and their caregivers: however, although it would be strongly needed, there is a lack of research on the efficacy of psychological intervention. Our aim was to investigate the effect of hypnosis-based intervention on psychological and perceived physical wellbeing in patients and the indirect effect on caregivers. Methods: We recruited eight ALS volunteers patients as a pilot sample for an hypnosis intervention and self-hypnosis training protocol lasting 1 month. Anxiety and depression level was measured in patients and caregivers at pre and post treatment phase. Quality of life and perceived physical symptoms changes were also investigated in patients. Results: One month pre-post treatment improvement in depression, anxiety, and quality of life was clearly clinically observed and confirmed by psychometric analyses on questionnaire data. Moreover, decreases in physical symptoms such as pain, sleep disorders, emotional lability, and fasciculations were reported by our patients. Improvements in caregiver psychological wellbeing, likely as a consequence of patients psychological and perceived physical symptomatology improvement, were also observed. Conclusion: To the best of our knowledge, even if at a preliminary level, this is the first report on efficacy psychological intervention protocol on ALS patients. The findings provide initial support for using hypnosis and self-hypnosis training to manage some ALS physical consequences and mainly to cope its dramatic psychological implications for patients and, indirectly, for their caregivers.
amyotrophic lateral sclerosis; hypnotherapy; self-hypnosis; psychological intervention
This study examined self-efficacy for managing pain, symptoms, and function in patients with lung cancer and their caregivers, and associations between self-efficacy and patient and caregiver adjustment. 152 patients with early stage lung cancer completed measures of self-efficacy, pain, fatigue, quality of life, depression, and anxiety. Their caregivers completed a measure assessing their self-efficacy for helping the patient manage symptoms and measures of psychological distress and caregiver strain. Analyses indicated that, overall, patients and caregivers were relatively low in self-efficacy for managing pain, symptoms, and function, and that there were significant associations between self-efficacy and adjustment. Patients low in self-efficacy reported significantly higher levels of pain, fatigue, lung cancer symptoms, depression, and anxiety, and significantly worse physical and functional well being, as did patients whose caregivers were low in self-efficacy. When patients and caregivers both had low self-efficacy, patients reported higher levels of anxiety and poorer quality of life than when both were high in self-efficacy. There were also significant associations between patient and caregiver self-efficacy and caregiver adjustment, with lower levels of self-efficacy associated with higher levels of caregiver strain and psychological distress. These preliminary findings raise the possibility that patient and caregiver self-efficacy for managing pain, symptoms, and function may be important factors affecting adjustment, and that interventions targeted at increasing self-efficacy may be useful in this population.
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.
Depressive symptoms; Family caregivers; Heart failure; Psychological stress
Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease, which rapidly leads to chronic respiratory failure requiring mechanical ventilation. Currently, forced vital capacity (FVC) < 50% is considered as physiologic marker for admitting patients to Noninvasive Positive Pressure Ventilation (NPPV) intervention, although it has been recently shown the median survival of patients with baseline FVC < 75% much shorter than median survival of patients with baseline FVC > 75%, independently by any treatment.
To assess the role of NPPV in improving outcome of ALS, a retrospective analysis was performed to investigate 1 year survival of ALS patients with FVC < 75% and nocturnal respiratory insufficiency, treated with NPPV, compared to a well-matched population of ALS patients, who refused or was intolerant to NPPV.
We investigated seventy-two consecutive ALS patients who underwent pulmonary function test. Forty-four presented a FVC > 75% and served as control group. Twenty-eight patients presented a FVC < 75% and showed, at polysomnography analysis, nocturnal respiratory insufficiency, requiring NPPV; sixteen were treated with NPPV, while twelve refused or were intolerant.
Increased survival rate at 1 year in patients with FVC < 75% treated with NPPV, as compared to those who refused or could not tolerate NPPV (p = 0.02), was observed. The median rate of decline in FVC% was slower in NPPV patients than in patients who did not use NPPV (95% CI: 0.72 to 1.85; p < 0.0001).
This report demonstrates that early treatment with NPPV prolongs survival and reduces decline of FVC% in ALS.
To assess the perceived needs of African-American caregivers and their expectations of the health care system, perceived level of success and satisfaction in meeting their needs, and their level of distress, we convened two focus groups at a local church in Oklahoma City, OK to discuss three questions. Responses were qualitatively analyzed for common themes. The groups comprised 13 African-American caregivers of demented elders. All participants completed a demographic form, the Zarit Burden Interview, and the Depression Scale. We found that African-American caregivers are frustrated with health care and service providers. The main differences of this group compared with other caregivers were their perceptions of racism and the absence of an available local support group. This information can serve to guide future studies in developing ways to increase caregiver satisfaction, decrease caregiver stress, and increase patient quality of life for this subgroup of caregivers.
The purpose of this study is to illustrate variations in caregiving trajectories as described by informal family caregivers providing end-of-life care. Instrumental case study methodology is used to contrast the nature, course, and duration of the phases of caregiving across three distinct end-of-life trajectories: expected death trajectory, mixed death trajectory, and unexpected death trajectory. The sample includes informal family caregivers (n = 46) providing unpaid end-of-life care to others suffering varied conditions (e.g., cancer, organ failure, amyotrophic lateral sclerosis). The unifying theme of end-of-life caregiving is “seeking normal” as family caregivers worked toward achieving a steady state, or sense of normal during their caregiving experiences. Distinct variations in the caregiving experience correspond to the death trajectory. Understanding caregiving trajectories that are manifest in typical cases encountered in clinical practice will guide nurses to better support informal caregivers as they traverse complex trajectories of end-of-life care.
ALS; congestive heart failure; end of life; oncology
The purpose of this study is to investigate how respiratory muscle strength correlates to cough capacity in patients with respiratory muscle weakness.
Materials and Methods
Forty-five patients with amyotrophic lateral sclerosis (ALS), 43 with cervical spinal cord injury (SCI), and 42 with Duchenne muscular dystrophy (DMD) were recruited. Pulmonary function tests including forced vital capacity (FVC) and respiratory muscle strength (maximal expiratory pressure, MEP; maximal inspiratory pressure, MIP) were performed. The correlation between respiratory muscle strength and cough capacity was analyzed.
In the SCI group, FVC in a supine position (2,597 ± 648 mL) was significantly higher than FVC in a sitting position (2,304 ± 564 mL, p < 0.01). Conversely, in the ALS group, FVC sitting (1,370 ± 604 mL) was significantly higher than in supine (1,168 ± 599 mL, p < 0.01). In the DMD group, there was no statistically significant difference between FVC while sitting (1,342 ± 506 mL) and FVC while supine (1,304 ± 500 mL). In addition, the MEP and MIP of all three groups showed a significant correlation with peak cough flow (PCF) (p < 0.01, Pearson's correlation analysis). In the SCI group, MIP was more closely correlated with PCF, while in the ALS and DMD groups, MEP was more closely correlated with PCF (p < 0.01, multiple regression analysis).
To generate cough flow, inspiratory muscle strength is significantly more important for SCI patients, while expiratory muscle function is significantly more important for ALS and DMD patients.
Amyotrophic lateral sclerosis; muscular dystrophy; duchenne; respiratory function tests; spinal cord injuries
Objectives: In Switzerland, assisted suicide (AS) is legal, provided that the person seeking assistance has decisional capacity and the person assisting is not motivated by reasons of self-interest. However, in this particular setting nothing is known about patients’ and their caregivers’ attitudes toward AS and life-prolonging measures. Methods: Data was retrieved through validated questionnaires and personal interviews in 33 patients and their caregivers covering the following domains: physical function according to the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R), demographic data, quality of life, anxiety, depression, social situation, spirituality, burden of disease, life-prolonging, and life-shortening acts. Results: In patients the median time after diagnosis was 9 months (2–90) and the median Amyotrophic Lateral Sclerosis (ALS) FRS-R score was 37 (22–48). The majority of patients (94%; n = 31) had no desire to hasten death. Patients’ and caregivers’ attitudes toward Percutaneous Endoscopic Gastrostomy (PEG) and Non-Invasive Ventilation (NIV) differed. Significantly more patients than caregivers (21.2 versus 3.1%) stated that they were against NIV (p = 0.049) and against PEG (27.3 versus 3.1%; p = 0.031). Answers regarding tracheotomy were not significantly different (p = 0.139). Caregivers scored significantly higher levels of “suffering” (p = 0.007), “loneliness” (p = 0.006), and “emotional distress” answering the questionnaires (p < 0.001). Suffering (p < 0.026) and loneliness (p < 0.016) were related to the score of the Hospital Anxiety and Depression Scale (HADS) in patients. Conclusion: A liberal legal setting does not necessarily promote the wish for AS. However, the desire to discuss AS is prevalent in ALS patients. There is a higher level of suffering and loneliness on the caregivers’ side. A longitudinal study is warranted.
ALS; motor neuron disease; quality of life; depression; end of life
Most patients with advanced cystic fibrosis (CF) die from respiratory failure and experience distressing symptoms as lung disease progresses. Little has been reported about symptom management and the continuation of disease-specific treatments near the end of life for patients with CF.
We aimed to describe symptom prevalence, symptom management, and frequency of use of disease-specific treatments for patients dying from complications of CF.
We conducted semistructured interviews about end-of-life care in CF with bereaved family caregivers and asked questions about symptoms and treatments.
Twenty-seven caregivers answered questions about symptoms and treatments. Caregivers reported that distressing symptoms were common during the last week of life, including dyspnea (100%), fatigue (96%), anorexia (85%), anxiety (74%), pain (67%), and cough (56%). Most caregivers felt that symptom control was “somewhat good.” Many reported that medical providers “did the best they could” to manage symptoms but four (15%) recalled no physician inquiry about symptoms. Caregivers expressed beliefs that symptoms could not be controlled and described concerns about side effects and potential for hastening death with the use of opioids and anxiolytics. Patients received numerous disease-specific treatments, and caregivers described many of them as uncomfortable but necessary.
Distressing symptoms are common in dying CF patients, and disease-specific treatments also cause discomfort. Many family caregivers have low expectations for symptom control. This exploratory research can be used to inform clinical interventions to improve symptom management for patients with advanced CF. J Pain Symptom Manage 2010;40:829–837.
Cystic fibrosis; symptom burden; symptom prevalence; palliative treatments
Chronically critically ill patients typically undergo an extended recovery after discharge from the intensive care unit, making involvement of family caregivers essential. Prior studies provide limited detail about specific ways this experience affects caregivers.
To (1) describe lifestyle restrictions and distress among caregivers of chronically critically ill patients 1 and 6 months after discharge and (2) explore how caregivers’ lifestyle restrictions and distress differ according to patients’ and caregivers’ characteristics.
Sixty-nine chronically critically ill patients and their family caregivers completed follow-up at 1 and 6 months after discharge from the intensive care unit. Data were collected from medical records and survey via telephone or mail.
Caregivers’ perceived lifestyle restrictions (Changes in Role Function) decreased from 1 month (mean [SD], 23.0 [8.3]) to 6 months (19.4 [8.6]) after discharge (P = .003), although patients’ problem behaviors and caregivers’ distress (8.9 [9.3] vs 7.9 [9.6], respectively; P = .32) did not change. Change in caregivers’ lifestyle restrictions differed by patients’ disposition (P = .02) and functional status (Health Assessment Questionnaire; P = .007). Caregiver’s lifestyle restrictions remained high when patients never returned home or never recovered their preadmission functional status. Caregivers reported the most restrictions in social life and personal recreation. Patients’ negative emotions and pain caused the most caregiver distress.
Caregivers of chronically critically ill patients perceived fewer lifestyle restrictions over time but reported no change in patients’ problem behaviors or distress. Lifestyle restrictions and distress remained high when patients never returned home or regained their preadmission functional status.
There are few published health technology assessments that have included the impact of a disease or treatment on caregivers’ health related quality of life (HRQL). The objectives of this study were to explore the overall HRQL of caregivers of people with Multiple Sclerosis compared to matched controls, and more specifically explore the impact of different levels of functioning in people with MS on caregivers’ HRQL scores.
A cross sectional observational study conducted as an online survey was undertaken in the UK. 200 caregivers of people with MS and 200 matched controls completed the EQ-5D, SF-36, HADS and a socio-demographic questionnaire. Caregivers also completed the Patient Determined Disease Steps questionnaire as a measure of MS severity. Differences in HRQL between caregivers and controls were assessed using t-tests and chi square analyses as appropriate. Ordinary Least Squares regression was also used to evaluate the disutility of being a caregiver compared to controls stratified by MS severity.
Caregivers reported significantly lower HRQL, as measured by the SF-36, HADS and EQ-5D, compared to matched controls. A lower level of functioning in people with MS was mirrored by lower levels of caregivers’ HRQL. At the point at which mobility problems required wheelchair use caregivers reported better HRQL.
The potential impact of caregiving on HRQL is an important consideration for economic evaluations. In relation to MS, the results suggest that caregiver’s HRQL deteriorates as the people with MS lose functioning; thus treatments that delay loss of function may have a benefit for caregivers as well as patients.
Health related quality of life; Burden of illness; Multiple sclerosis; Disease severity; Indirect costs
This study examined the quality of life correlates of family caregiving and caregiving strain in a large national epidemiological sample.
Structured telephone interviews were conducted with 43,099 participants as part of the REasons for Geographic and Racial Differences in Stroke (REGARDS) study. Participants completed the 12-item short form health survey (SF-12) and brief measures of depressive symptoms, social contacts, and caregiving strain.
Family caregiving responsibilities were reported by 12% of participants. Caregivers reported more quality of life problems than noncaregivers, but these effects were largely dependent on the perceived level of caregiving strain. High strain caregivers reported more problems with emotional distress, worse physical functioning, and fewer social contacts than noncaregivers. Conversely, caregivers who reported no strain from caregiving reported better quality of life than noncaregivers. Caregiving strain effects were not due to demographic differences or to more objective indicators of caregiving demand.
Psychological and social indices of quality of life indicate prevalent problems among family caregivers who experience high strain from their caregiving responsibilities. Public health programs for disabled individuals should include assessments of strain on family caregivers and support services for those who report high levels of caregiving strain.
caregiving; caregiving strain; family caregivers; psychological health; depressive symptoms; health-related quality of life
To describe the levels and identify independent predictors of caregiver burden in partners of patients with heart failure.
Care and support from a partner are important for the well-being of patients with heart failure and may potentially delay disease progression. However, caregiving may be associated with burden and stress and it is therefore important to understand which factors that influence caregiver burden. Theoretical models of caregiving describe the concept of burden as an outcome variable, including decreased well-being and health.
Data for this descriptive cross-sectional study were collected between January 2005 and September 2008. The dependent variable consisted of the Caregiver Burden Scale total score index. Socio-demographic and clinical characteristics, health-related quality of life, symptoms of depression, perceived control, and knowledge on heart failure were included in a regression analysis to determine independent predictors of caregiver burden.
The 135 partners had a mean-age of 69 years and 75% were females. Caregiver burden was perceived as medium in 30% of the partners. The patients’ Physical Component Score of SF-36 (p<0.001), partners’ Mental Component Score of SF-36 (p<0.001) and perceived control (p<0.01) accounted for 39% of the variance in caregiver burden.
Caregiver burden was lower when the mental health of the partner and the physical health of the patient were better and the partner experienced higher control over the heart disease. A partner-centered approach to educate and support partners of patients with heart failure is essential to improve the life situation for patient–partner dyads.
Caregiver burden; Depression; Health-related quality of life; Heart failure; Partner; Nursing
Distress may be heightened among members of cancer patient-caregiver dyads that are mismatched on smoking status (either the patient or caregiver smokes, but the other does not), negatively affecting quality of life (QoL). The purpose of this study was to examine associations between patient-caregiver smoking concordance, caregiver psychological adjustment, and caregiver and patient mental and physical QoL.
Lung and colorectal patient-caregiver dyads (N= 742) were identified from the Cancer Care Outcomes Research and Surveillance (CanCORS) and CanCORS Caregiver studies. The majority of the cancer patients were male (67.0 %) with local (45.6 %) or regional (12.9 %) disease. The majority of the informal caregivers were females (78.6%), under 65 years of age (69.6%), and often spouses (57.8%) of the patients.
Lung and colorectal cancer caregivers who were members of dyads where one or both members continued to smoke, reported worse mental health QoL than non-smoking dyads. For colorectal cancer patients, continuing to smoke when the caregiver did not was associated with worse mental health QoL compared to non-smoking dyads. Dyad smoking was less strongly associated with physical QoL for both caregivers and patients.
Results highlight the importance of assessing smoking in both cancer patients and their caregivers and referring families to appropriate psychosocial and smoking cessation services.
This is the first study to show associations between cancer patient-caregiver smoking status and QoL for both dyad members. Future studies will need to confirm these associations longitudinally and investigate potential mechanisms linking dyad smoking and QoL.
lung cancer; colorectal cancer; smoking; caregivers; quality of life
Advanced cancer family caregivers who have good relationships with other family members and with patient’s health care providers (PHCPs) have less emotional distress than caregivers with poor relationships. Given a history of different experiences in medical settings among Whites and African Americans, we examined moderation effects by race.
Baseline data from an ongoing study were collected via telephone interviews with 397 family caregivers of advanced cancer patients at two cancer clinics. Depressed mood and anxiety were measured with the 14-item Profile of Mood States.
Caregivers reporting good relationships with family (p<.001) and PHCPs (p<.001) had lower anxiety and less depressed mood (family, p<.01; PHCP, p<.001). Caregiver race moderated relationship quality: Whites with good PHCP relationships felt less depressed mood (p<.01) and anxiety (p<.01). African Americans with good family relationships showed less depressed mood (p<.05), but no association with anxiety.
Good relationships are important for caregivers, but PHCPs may have more influence on the wellbeing of White than of African American caregivers.
Developing relationships with caregivers of advanced cancer patients may improve wellbeing for caregivers. In addition, creating strategies to support family relationships may be a useful intervention, especially for African American advanced cancer caregivers.
“Caregiver Burden” is actually an expression addressing the adverse consequences of the care provided to the patients’ with dementia. Review of the previous studies reveals a higher rate of depression and anxiety among the caregivers as compared to the general population. This study has been designed to evaluate the caregiver burden and then the factors influencing it among caregivers of patients with dementia in Iran.
In this cross-sectional study, 153 patients and their caregivers registered in the Memory Clinic in Roozbeh Hospital and Iranian Alzheimer Association (IAA) were included. Data collection scales were Iranian Version of Caregiver Burden, Global Deterioration scale and Barthel index. Multiple linear regression model was applied to determine the factors influencing the caregiver burden.
Out of the 153 patients, 90 were male. The mean age calculated for the patients and the caregivers was 77.1 and 53, respectively. The mean of caregiver burden was 55.2. Three variables, gender (P<0.01), education of the patient (P<0.005 for illiterate patients), and the patient's dependence on the caregiver for his/her daily tasks (P<0.000)) were correlated with a high level of burden on the caregiver. The recommended model explains 0.664% of the variance of the outcome variable.
Presence of either moderate or higher levels of burden (58-116) in more than 50% of the caregivers of these patients’ highlights the need for more attention from health policy makers in Iran. Promoting the level of caregivers’ quality of life along with enabling the patients in performing their daily tasks in order to reduce the imposed burden on caregivers’ is recommended.
Dementia; caregivers; burden; family caregivers; elderly people; caregiver burden; Iran
The relationship between family functioning and dementia caregiving is complex. The present study examined the inter-relationships between family functioning, caregiver burden, and patient characteristics. Participants were 72 live-in, family caregivers of patients with mild (n = 47) or moderate dementia (n = 25). Caregivers completed measures of burden, family functioning, depression, and anxiety. Ratings of patients’ memory/behavior problems and patients’ activities of daily living (ADLs) were also collected. Results indicated that higher levels of caregiver burden were significantly associated with increased caregiver depression and anxiety, greater frequency of memory and behavior problems in the dementia patient, worse ADLs, and poorer family functioning. Even after controlling for caregiver depression, caregiver anxiety, and frequency of memory/behavior problems in dementia patients, poorer family functioning continued to be associated with higher levels of caregiver burden. Caregivers with high levels of burden reported greater family dysfunction in communication and roles, regardless of their relationship to the patient (i.e., spouse or child). These findings suggest that including a family systems component in caregiver interventions may be beneficial in reducing burden in these very distressed individuals.
Dementia Caregivers; Burden; Family Functioning
Caregivers play an important role in supporting people with illness either acute or chronic. It is important to explore caregiver's emotional turmoil as it helps in exploring their burden which can have impact on the patient's illness and functioning apart from their own.
The current study aimed at assessing the predictors of anxiety and depression among caregivers of patients with stroke.
Settings and Design:
Seventy-five consecutive patient-caregiver dyads were recruited in the study.
Materials and Methods:
Patients and caregivers were assessed using a semi-structured proforma for the sociodemographic details. Subsequently these dyads were assessed for anxiety and depression levels using the Hospital Anxiety and Depression Scale.
Statistical Analysis Used:
Chi-square tests (for categorical variables) were used to find difference between the patients and the caregivers on different variables. Additionally Cramer's V-test and phi test were used for 2*4 contingency tables. Linear regression model was used.
Linear regression revealed that anxiety level in caregivers was predicted by the sex of care giver.
Caring for the patients with stroke presents increased burden to the care givers which manifests as increased rate of anxiety and depression among them. It is important to assess the care givers along with the patients for emergence of these negative affective states. One needs to be extra cautious if the patient happens to be the primary earning member of the family.
Anxiety; caregivers; depression; stroke
Primary informal caregivers provide a substantial amount of the care and support for persons with Alzheimer’s disease (AD). This review aims to investigate the association between the quality of life (QoL) of primary informal AD caregivers and the level of care that these caregivers provide to persons with AD.
Studies involving primary informal caregivers of persons with AD will be included in the review. These studies will be required to focus on the care that caregivers provide for their loved ones. The primary outcome is level or quality of care. The main independent variable is caregiver QoL. In addition to QoL, we will include studies that examine other independent variables that are considered to be important components of QoL. These variables include social support, caregiver burden, caregiver wellbeing, and caregiver depression.
We will search Medline-OVID, Embase-OVID, Cochrane Central-OVID, and PsycINFO-OVID from inception onwards. Two raters will independently screen each article using pre-established inclusion/exclusion criteria. Screening will take place at two levels: title and abstract, and full text. Conflicts will be resolved by discussion or by a third reviewer. We will assess the risk of bias of each included study using standardized quality assessment tools for specific types of designs. A narrative synthesis method will be used to describe our findings. Quantitative summary and meta-analysis will be conducted if appropriate. We will employ GRADE to evaluate the strength of the evidence in this review.
Results of this systematic review will show whether and how caregiver QoL is related to the level of care that caregivers provide to persons with AD.
Alzheimer’s disease (AD); Caregiver; Quality of life (QoL); Level of care; Quality of care; PROSPERO registration number: CRD42013003613
Family doctors have been ascribed a role in monitoring patients and their informal caregivers. Little is known about the factors that might alert physicians to changing circumstances or needs of the caregivers. The study objective was to examine changes in family caregivers' quality of life following an emergency department (ED) visit by an older community-dwelling relative that might cue doctors to subsequent caregiver distress.
A longitudinal study with follow-up at 1- and 4-months was conducted in the EDs of 4 hospitals in Montreal, Canada. Caregivers reported on demographics and quality of life (SF-36). Patients reported on demographics and functional disability. Multiple linear regression for repeated measures was used to evaluate changes in caregiver quality of life and factors related to these changes.
159 caregivers (60.5 yrs ± 15.8%; 73.0% female), including 68 (42.8%) spouses, 60 (37.7%) adult children, and 31 (19.5%) other relatives participated. Following an initial ED visit by older relatives, caregiver general health and physical functioning declined over time, while mental health status improved. Compared to the other relative caregiver group, spouses were at increased risk for decline in general health, mental health, and physical functioning at 1 month, while adult children were at increased risk for decline in physical health at 1 month.
Spouses were most at risk for decline in quality of life. Primary care physicians who become aware of an ED visit by an elderly person may be alerted to possible subsequent deterioration in family caregivers, especially spouses.
To determine whether the place of death for patients with cancer is associated with patients' quality of life (QoL) at the end of life (EOL) and psychiatric disorders in bereaved caregivers.
Patients and Methods
Prospective, longitudinal, multisite study of patients with advanced cancer and their caregivers (n = 342 dyads). Patients were followed from enrollment to death, a median of 4.5 months later. Patients' QoL at the EOL was assessed by caregiver report within 2 weeks of death. Bereaved caregivers' mental health was assessed at baseline and 6 months after loss with the Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, and the Prolonged Grief Disorder interview.
In adjusted analyses, patients with cancer who died in an intensive care unit (ICU) or hospital experienced more physical and emotional distress and worse QoL at the EOL (all P ≤ .03), compared with patients who died at home with hospice. ICU deaths were associated with a heightened risk for posttraumatic stress disorder, compared with home hospice deaths (21.1% [four of 19] v 4.4% [six of 137]; adjusted odds ratio [AOR], 5.00; 95% CI, 1.26 to 19.91; P = .02), after adjustment for caregivers' preexisting psychiatric illnesses. Similarly, hospital deaths were associated with a heightened risk for prolonged grief disorder (21.6% [eight of 37] v 5.2% [four of 77], AOR, 8.83; 95% CI, 1.51 to 51.77; P = .02), compared with home hospice deaths.
Patients with cancer who die in a hospital or ICU have worse QoL compared with those who die at home, and their bereaved caregivers are at increased risk for developing psychiatric illness. Interventions aimed at decreasing terminal hospitalizations or increasing hospice utilization may enhance patients' QoL at the EOL and minimize bereavement-related distress.
Caregiver depression is common, can negatively influence one's ability to communicate with healthcare providers, and may hinder appropriate care for children with asthma.
To evaluate the impact of caregiver depression on communication and self-efficacy in interactions about asthma with their child's physician.
Cross sectional analysis using data from the Prompting Asthma Intervention in Rochester–Uniting Parents and Providers study.
We enrolled caregivers of children (2–12 yrs) with persistent asthma prior to their healthcare visit. Caregivers were interviewed via telephone after the visit to assess depression, self-efficacy, and provider communication at the visit. Caregiver depression was measured using the Kessler Psychological Distress scale. We assessed caregiver self-efficacy using items from the Perceived Efficacy in Patient Physician Interactions scale; caregivers rated their confidence for each item (range 0–10). We also inquired about how well the provider communicated regarding the child’s asthma care. Bivariate and multivariate analyses were used.
We interviewed 195 caregivers (response rate 78%; 41% Black, 37% Hispanic), and 30% had depressive symptoms. Caregiver rating of provider communication did not differ by depression. Most caregivers reported high self-efficacy in their interactions with providers; however depressed caregivers had lower scores (8.7 vs. 9.4,p=.001) than non-depressed caregivers. Further, depressed caregivers were less likely to be satisfied with the visit (66% vs. 83%,p=.014), and to feel all of their needs were met (66% vs. 85%,p=.007). In multivariate analyses, depressed caregivers were >2× more likely to be unsatisfied with the visit and to have unmet needs compared to non-depressed caregivers.
Depressed caregivers of children with asthma report lower confidence in interactions with providers about asthma and are less likely to feel that their needs are met at a visit. Further study is needed to determine the best methods to communicate with and meet the needs of these caregivers.
asthma; caregiver depression; health care provider; communication
Hematopoietic cell transplant patients are among the most vulnerable and acutely ill cancer populations (Bevans, Mitchell, & Marden, 2008). The responsibility of caring for the daily physical and psychosocial needs of these patients after transplant is placed mostly on family caregivers(Williams, 2007). The purpose of this descriptive correlational research study was to describe caregiving experiences of 56 caregivers of HCT patients 3–12 months following transplant.
Methods & Sample
Patients and caregivers were recruited from two west coast regional transplant programs in the United States. Variables studied were: relationship quality, rewards of caregiving, predictability, role strain, patient function, caregiving activities, and caregiver quality of life (QOL).
Results indicated that all areas of role strain are significantly negatively correlated with caregiver's QOL. Predictability was negatively associated with problem solving and emotional strain indicating that as the level of predictability of the situation decreases, caregiver strain and problem solving increase. Predictability was positively correlated to caregiver QOL indicating that as the situation is more predictable caregiver QOL increases. Emotional strain, problem-solving strain, and usual care strain were significantly positively related, indicating that emotional strain and problem solving strain increased together. As usual care strain increased, so did problem-solving strain and emotional strain.
Suggestions for interventions include assessing and responding to caregiver issues such as emotional strain, problem-solving strain, usual care strain, unpredictability, and QOL. Examples of caregiver-focused interventions include providing timely appropriate information about these caregiver concerns including elements that make the caregiving situation predictable, and incorporating best practices for preventing and minimizing
HCT Transplant; Caregivers; Predictability; Role Strain; Quality of Life