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Frontiers in Public Health 2020Informal caregivers have an important role in bridging the gap between the assistance care recipients need and what can be provided by the health care systems across... (Review)
Review
Informal caregivers have an important role in bridging the gap between the assistance care recipients need and what can be provided by the health care systems across Europe. The burden of the caregiving role places a significant threat to caregiver health, and the vast majority of caregiver's report stress and emotional strain, depression, and increased rates of chronic diseases. In line with this, strengthening the caregiver's mental health is one of the main goals for optimal caregiving. Caregivers already struggle with the demand of their role while coping with health problems, social, family, and work obligations. The solution for the caregiver's mental health needs to be accessible, low cost, and time-effective. This scoping review investigates digital mental health tools available as a mean of supporting the mental health of caregivers. Databases searched include Summon search box, the Cochrane Library, and PubMed. Three groups of keywords were combined: relating to digital mental health interventions for caregivers, digital mental health interventions and stress in elderly care, and digital mental health interventions and burden in elderly care. Caregivers reported that digital mental health tools have an overall positive role in their health. Coping skills, emotion regulation, skill building, and education are found to be important aspects of digital mental health tools. There was a noted lack of digital mental health apps available specifically for the caregiver of older adults. Furthermore, the digital mental health tools, divided into three categories in this review, focused either on building skills or educating caregivers and assisting with the duties rather than the mental health of the caregiver itself. As repeatedly suggested in the reviewed studies, digital mental health interventions overall contribute to reducing the caregiver burden with a limitation of addressing one aspect of caregiver needs -i.e., specific coping skills or education regarding illnesses such as Alzheimer's disease and Dementia. The lack of all-encompassing, data and theory-driven digital mental health tools for addressing and supporting the caregiver's mental health is evident.
Topics: Adaptation, Psychological; Aged; Alzheimer Disease; Caregivers; Europe; Humans; Mental Health
PubMed: 32411643
DOI: 10.3389/fpubh.2020.00128 -
Current Psychiatry Reports Jun 2019With the rising dementia population, more and more programs have been developed to help caregivers deal with the care-recipient as well as their own frustrations. Many... (Review)
Review
With the rising dementia population, more and more programs have been developed to help caregivers deal with the care-recipient as well as their own frustrations. Many interventions aim to enhance caregiver's ability to manage behavior problems and other deteriorations in functioning, with less direct emphasis placed on caring for the caregivers. We argue that techniques based on psychotherapy are strategically important in assistance provided to caregivers because of their utility for promoting emotional health. This article provides a focused review of such methods used in evidence-based intervention programs, along with the mechanisms of change associated with these methods. While cognitive-behavioral therapy (CBT) has a strong evidence base, there is also a growing trend to package CBT techniques into various psychoeducational programs. These programs, which we call psychoeducation with psychotherapeutic programs, have been consistently found to be effective in reducing caregiver distress and are suited for delivery in group format, even by paraprofessionals, to lower the cost of intervention. A recent trend is the effective use of technological aids (e.g., the internet) to deliver CBT and psychoeducation, reaching more caregivers. As for therapeutic mechanisms, the use of coping skills, reduced dysfunctional thoughts, and increased self-efficacy in controlling upsetting thoughts has received support in studies. We conclude that psychotherapeutic techniques are increasingly being used effectively and efficiently to assist caregivers, aided by successful adaptation for educational or technologically advanced means of delivery. More research on therapeutic mechanisms is needed to understand how the techniques work and how they can be further refined.
Topics: Adaptation, Psychological; Caregivers; Cognitive Behavioral Therapy; Dementia; Depression; Humans; Learning; Self Efficacy; Stress, Psychological
PubMed: 31172302
DOI: 10.1007/s11920-019-1045-9 -
Supportive Care in Cancer : Official... Jan 2016We examined the effects of an enhanced informal caregiver training (Enhanced-CT) protocol in cancer symptom and caregiver stress management to caregivers of hospitalized... (Randomized Controlled Trial)
Randomized Controlled Trial
PURPOSE
We examined the effects of an enhanced informal caregiver training (Enhanced-CT) protocol in cancer symptom and caregiver stress management to caregivers of hospitalized cancer patients.
METHODS
We recruited adult patients in oncology units and their informal caregivers. We utilized a two-armed, randomized controlled trial design with data collected at baseline, post-training, and at 2 and 4 weeks after hospital discharge. Primary outcomes were self-efficacy for managing patients' cancer symptoms and caregiver stress and preparedness for caregiving. Secondary outcomes were caregiver depression, anxiety, and burden. The education comparison (EDUC) group received information about community resources. We used general linear models to test for differences in the Enhanced-CT relative to the EDUC group.
RESULTS
We consented and randomized 138 dyads: Enhanced-CT = 68 and EDUC = 70. The Enhanced-CT group had a greater increase in caregiver self-efficacy for cancer symptom management and stress management and preparation for caregiving at the post-training assessment compared to the EDUC group but not at 2- and 4-week post-discharge assessments. There were no intervention group differences in depression, anxiety, and burden.
CONCLUSION
An Enhanced-CT protocol resulted in short-term improvements in self-efficacy for managing patients' cancer symptoms and caregiver stress and preparedness for caregiving but not in caregivers' psychological well-being. The lack of sustained effects may be related to the single-dose nature of our intervention and the changing needs of informal caregivers after hospital discharge.
Topics: Anxiety; Caregivers; Depression; Female; Health Education; Humans; Male; Mental Health; Middle Aged; Neoplasms; Patient Discharge; Self Efficacy; Stress, Psychological
PubMed: 26062925
DOI: 10.1007/s00520-015-2797-3 -
Multifactorial Examination of Caregiver Burden in a National Sample of Family and Unpaid Caregivers.Journal of the American Geriatrics... Feb 2019To examine factors associated with caregiver burden from a multifactorial perspective by examining caregiver and care recipient characteristics and a full range of...
OBJECTIVES
To examine factors associated with caregiver burden from a multifactorial perspective by examining caregiver and care recipient characteristics and a full range of caregiving tasks.
DESIGN
Nationally representative surveys of community-dwelling older adults and their family caregivers residing in the United States.
SETTING
2011 National Health and Aging Trends Study and National Study of Caregiving.
PARTICIPANTS
Community-dwelling older adults and their family caregivers.
MEASUREMENTS
Caregiver burden, comprising emotional, physical, and financial difficulties associated with caregiving.
RESULTS
An estimated 14.9 million caregivers assisted 7.6 million care recipients. More than half of caregivers reported burden related to caregiving. In a multivariable regression model, caregivers who assisted with more activities of daily living and instrumental activities of daily living, health management tasks, and health system logistics were more likely to experience burden, as were female caregivers, adult child caregivers, caregivers in poor health, caregivers with anxiety symptoms, and those using respite care. Dementia was the only care recipient characteristic associated with burden.
CONCLUSION
Caregiver characteristics and provision of caregiving tasks determine caregiver burden more than care recipient characteristics. Absence of an association between type of a care recipient's chronic conditions and burden, except for dementia, suggests that the tasks that caregivers who assist older adults with a variety of health conditions undertake shape the experience of caregiving. J Am Geriatr Soc 67:277-283, 2019.
Topics: Activities of Daily Living; Adult Children; Aged; Aged, 80 and over; Caregivers; Chronic Disease; Compensation and Redress; Cost of Illness; Dementia; Female; Humans; Independent Living; Male; Regression Analysis; United States
PubMed: 30452088
DOI: 10.1111/jgs.15664 -
PloS One 2015To assess the direct and indirect effects of patient or caregiver factors on caregiver burden of caring for community-residing people with mild Alzheimer's disease (AD).
OBJECTIVES
To assess the direct and indirect effects of patient or caregiver factors on caregiver burden of caring for community-residing people with mild Alzheimer's disease (AD).
METHODS
We conducted a cross-sectional study of patients diagnosed with AD from two hospitals and three communities in Taiyuan, China and their caregivers. For this survey, 200 patients with mild AD and their caregivers were selected. Caregivers were asked to provide sociodemographic information including age, gender, relationship with the patient, level of education, and number of contact hours per week with the patient. Caregiver burden was assessed using the Caregivers Burden Inventory. The caregivers also completed other measures including the Positive Aspects of Caregiving, the Family Adaptation, Partnership, Growth, Affection, and Resolve, and the Social Support Rating Scale. The patients with AD completed the Montreal Cognitive Assessment; their caregivers completed the Activities of Daily Living Scale and a questionnaire about the patients' Behavioral and Psychological symptoms of Dementia. The main outcome in this study was caregiver burden. The care receivers' level of cognitive function, physical function, and behavioral problems were treated as original stress; the primary appraisal variable was measured as the number of hours of caregiving in the previous week reported by the caregiver. Mediator variables included perceived social support, family function, and caregiving experience. Path analysis was used to build the interrelationship among caregiver burden and patient or caregiver factors.
RESULTS
A lower level of cognitive function in patients (r = -0.28, p<0.001) and longer hours of caregiving (r = 0.17, p = 0.019) were related to increased caregiver burden. Greater social support (r = -0.23, p<0.001), family function (r = -0.17, p = 0.015) and caregiving experience (r = -0.16, p = 0.012) were related to decreased caregiver burden. Social support (r = 0.16, p = 0.040) and family function (r = 0.25, p = 0.002) were directly related to patients' level of cognitive functioning, but were mediator factors between level of cognitive function in patients and caregiver burden. Similarly, social support was a mediator factor between patients' daily function (r = -0.23, p = 0.004) and caregiver burden; while caregiving experience mediated the link between behavioral and psychological symptoms in patients (r = 0.36, p<0.001) and caregiver burden.
CONCLUSION
Level of cognitive function and hours of caregiving were directly related to caregiver's burden. Social support, family function and caregiving experience could mediate the relationship between patient factors and caregiver burden. Focusing on patient factors and promoting caregiver care will be helpful in lowering the perceived burden of caregiving.
Topics: Aged; Alzheimer Disease; Caregivers; China; Cost of Illness; Demography; Female; Humans; Male; Middle Aged; Regression Analysis; Residence Characteristics
PubMed: 26154626
DOI: 10.1371/journal.pone.0132168 -
Medicine Sep 2018Aim of this study was to estimate the prevalence rate of depression in cancer patient caregivers and to identify factors affecting depression and quality of life of... (Meta-Analysis)
Meta-Analysis Review
BACKGROUND
Aim of this study was to estimate the prevalence rate of depression in cancer patient caregivers and to identify factors affecting depression and quality of life of cancer caregivers.
METHODS
Relevant research articles were retrieved after literature search in several electronic databases. Random effects meta-analyses were performed to obtain pooled estimates of the prevalence rates of depression and anxiety; their respective scores, and quality of life scores. Significant relationships between depression and factors related to depression and quality of life reported in individual studies were identified.
RESULTS
Thirty studies were included. Overall, 21,149 caregivers were appraised in these studies (age 52.65 years [95% CI: 49.65, 55.65]; 31.14% [28.40, 33.89] men). The prevalence of depression and anxiety were 42.30% [33.31, 51.29] % and 46.55% [35.59, 57.52], respectively. Quality of life score, as measured with Caregiver Quality of Life-Cancer scale was 64.55 [47.44, 81.66]. Patient's condition, caregiving burden, duration of caregiving, spouse caregiver, caregiver being unemployed, caregiver with chronic disease, caregiver's sleep quality, caregiver's avoidance, financial problems, and female sex were positively associated with depression whereas overall quality of life of caregiver, pre-loss grief, caregiver's education level, caregiver's age, caregiver's sense of coherence, and caregiver's bondage with patient were negatively associated with depression in caregivers.
CONCLUSION
A considerably high prevalence of depression is found in cancer patient caregivers. Several factors may affect depression and their quality of life of cancer patient caregivers.
Topics: Anxiety; Caregivers; Depression; Female; Humans; Male; Neoplasms; Prevalence; Quality of Life; Risk Factors
PubMed: 30278483
DOI: 10.1097/MD.0000000000011863 -
Acta Clinica Croatica Jun 2019The aim of this study was to determine the effect of home care provided for stroke patients and education of caregivers on the caregiver burden and quality of life. The...
The aim of this study was to determine the effect of home care provided for stroke patients and education of caregivers on the caregiver burden and quality of life. The study was conducted by using a true experimental method with pre-test and post-test control group. The study included 43 experimental and 43 control patients and their caregivers. The Patient and Caregiver Description Form, Patient Problem Identifying Form, Caregiving Burden Scale and SF-36 Quality of Life Scale were used to collect data in the study. Nursing care was provided to the experimental group patients according to the model of daily living activities, while their caregivers received training and consultancy. In the control group, there was no such intervention. Percentage distribution, χ, independent sample t-test, paired t-test, Mann-Whitney U test, and Wilcoxon signed-rank tests were used on statistical analyses. There was no significant difference in pre-test score means between experimental and control group caregivers. However, a statistically significant difference was found in all sub-dimensions of the quality of life scale between pre-test and post-test score means in the experimental group caregivers. This study results indicated that home care provided for stroke patients and education of caregivers decreased the caregiver burden and increased their quality of life.
Topics: Activities of Daily Living; Adaptation, Psychological; Aged; Aged, 80 and over; Caregivers; Cost of Illness; Female; Home Care Services; Humans; Male; Middle Aged; Quality of Life; Stroke; Stroke Rehabilitation
PubMed: 31819329
DOI: 10.20471/acc.2019.58.02.16 -
Cancer May 2022Adult-children caring for a parent with cancer comprise a significant segment of caregivers. Yet less is known about adult-child caregivers, their burden, or caregivers'...
BACKGROUND
Adult-children caring for a parent with cancer comprise a significant segment of caregivers. Yet less is known about adult-child caregivers, their burden, or caregivers' and patients' gender's impact, which may differ from the well-studied spousal caregiver. This knowledge gap may hinder efforts to ameliorate adult-children's caregiver burden.
METHODS
We analyzed caregiver surveys from the Cancer Care Outcomes Research and Surveillance Consortium, a multi-regional population-based study of patients with colorectal or lung cancer. Using t tests and multivariate regression models, we assessed whether adult-child and spousal caregivers' caregiving responsibilities and social/emotional and financial burdens differed and used structural equation models (SEMs) to examine mediating factors.
RESULTS
Compared with spouses/partners (N = 1007), adult-children (N = 227) spent less time caregiving (14 vs 23 hours/week; P < .001), but experienced higher social/ emotional burden (P < .01). In models adjusted for objective caregiving burden measures and demographics, adult-children's social/emotional (P < .05) and financial burdens (P < .01) were greater than spouses'. Poor communication quality was associated with greater social/emotional burden for both groups (P < .05). SEMs indicated that gender concordance between caregivers and patients (eg, daughters caring for mothers) and caregiver employment increased the difference between adult-child and spouses' social/emotional burden, whereas caregiver-patient relationship quality reduced it.
CONCLUSIONS
Adult-children spend less time caregiving than spouses/partners, but have higher social/emotional and financial caregiving burdens, partially due to adult-children's employment, caregiver-patients' gender concordance, and relationship quality. Gender concordance's contribution to greater social/emotional burden adds important context to prior findings, indicating female caregivers experience the most burden. Interventions that improve caregiver-patient communication may reduce both adult-child and spousal caregiver burden.
Topics: Adult; Adult Children; Caregiver Burden; Caregivers; Cost of Illness; Female; Humans; Spouses
PubMed: 35285946
DOI: 10.1002/cncr.34164 -
Seminars in Oncology Nursing Aug 2019To conceptualize the pathways and assess current evidence for the relationship between caregiver well-being and the quality of the cancer patient's care. (Review)
Review
OBJECTIVES
To conceptualize the pathways and assess current evidence for the relationship between caregiver well-being and the quality of the cancer patient's care.
DATA SOURCES
Qualitative, quantitative, and theoretical literature and official reports.
CONCLUSION
Caregiver well-being has both direct and indirect effects on the quality of cancer care, including care received from the health care team, from the caregiver themselves, and in relation to patients' own self-management.
IMPLICATIONS FOR NURSING PRACTICE
Supporting caregivers has tangible consequences with regard to the quality of cancer care on multiple levels, with direct implications for patient outcomes. Nurses have a key role in providing psychosocial care to patients and their caregivers, and in supporting system-level change.
Topics: Caregivers; Humans; Neoplasms; Nurse-Patient Relations; Quality of Health Care; Self Care
PubMed: 31229346
DOI: 10.1016/j.soncn.2019.06.006 -
Journal of the American Geriatrics... May 2021As home becomes the most common place of death in the United States, information about caregiver support and place of death is critical to improve patient and caregiver...
BACKGROUND/OBJECTIVES
As home becomes the most common place of death in the United States, information about caregiver support and place of death is critical to improve patient and caregiver experiences at end of life. We seek to examine (1) the association between family care availability and place of death; and (2) caregiving intensity associated with place of death.
DESIGN
2017 National Health and Aging Trends Study and National Study of Caregiving; nationally representative cross-sectional study of deceased older adults and last-month-of-life (LML) caregivers.
SETTING
United States; all places of deaths.
PARTICIPANTS
Three-hundred and seventy-five decedents and 267 LML caregivers.
MEASUREMENTS
Place of death (home, hospital, and nursing or hospice facility), family care availability (spouse/partner, household size, number of daughters and sons), caregiving intensity (hours of help provided at LML and a binary indicator for high care-related emotional difficulty).
RESULTS
38.9% of older adults died at home, followed by hospital (33.1%), and nursing or hospice facility (28.0%). In an adjusted multinomial logistic regression, decedents with larger household size (odds ratio [OR]: 0.441; 95% confidence interval [CI]: 0.269-0.724) and more daughters (OR: 0.743 [95% CI: 0.575-0.958]) had lower odds of dying in nursing or hospice facility relative to dying at home. For older adults who died at home, caregivers provided 209.8 h of help at LML. In contrast, when death occurred in nursing or hospice facility, caregivers provided 91.6 fewer hours of help, adjusted for decedent and caregiver characteristics. Dying in hospital was associated with higher odds of caregiver emotional difficulty relative to home deaths (OR: 4.093 [95% CI: 1.623-10.323]).
CONCLUSIONS
Household size and number of daughters are important determinants of place of death. Despite dying at home being associated with more hours of direct caregiving; caregiver emotional strain was experienced as higher for hospital deaths. Better support services for end-of-life caregivers might improve patient and caregiver experiences for home and hospital deaths.
Topics: Adult Children; Aged; Aged, 80 and over; Caregiver Burden; Caregivers; Cross-Sectional Studies; Family Characteristics; Female; Home Care Services; Hospices; Hospitals; Humans; Male; Odds Ratio; Terminal Care; United States
PubMed: 33590479
DOI: 10.1111/jgs.17055