Associations in Sense of Coherence and Depression in Caregivers of Stroke Survivors Across 2 Years

The objective of this longitudinal study was to detect the relationship between the sense of coherence (SOC), which is an adaptive coping response, and depression in informal caregivers of stroke survivors across 2 years. One-hundred-fifteen veterans, who were hospitalized after experiencing an acute stroke, and their informal caregivers were enrolled prior to discharge. Data were collected via face-to-face in-home interviews at 1, 6, 12, 18, and 24 months after discharge. A linear mixed model was fitted to estimate the effects of the time-dependent covariates (SOC) while considering the dependence of outcome measures at repeated times. Based on the linear mixed model, caregivers with a stronger SOC were associated with lower levels of caregiver depression across 2 years following a stroke (p < 0.0001). SOC seems to be an important aspect of a caregiver’s capacity to cope after tending to the needs of a stroke patient.     

Gender differences among Canadian spousal caregivers at the end of life

The purpose of this study was to examine gender differences in spousal caregiving at the end of life. The primary research question was to determine gender differences in caregiver strain among spousal caregivers. Secondary research questions investigated included (i) the presence of gender differences among spousal caregivers in the duration of care provided; (ii) gender differences among spousal caregivers in formal service use and unmet service needs; and (iii) whether support to care recipients in activities of daily living varied according to the gender of the spousal caregiver. The study was conducted over a 2‐year period (2000–2002) in south‐central Ontario, Canada. The study sample included 283 informal spousal caregivers (198 females, 85 males) each of whom were caring for a terminally ill spouse at the time they participated in a cross‐sectional telephone survey. The analysis showed that females reported a significantly greater level of caregiving strain than males (t = –2.12, d.f. = 281, P = 0.035). When considering source of support in activities of daily living for the care recipient, differential assistance was noted on the basis of caregiver gender. Female caregivers had almost twice the odds of providing support in toileting‐related tasks than male caregivers (odds ratio (OR) = 1.98, 95% confidence interval (CI) = 1.01–3.85, P = 0.044), while male caregivers had approximately twice the odds of providing support in mobility‐related tasks (OR = 0.41, 95% CI = 0.21–0.81, P = 0.011). Care recipients who had a female caregiver had lower odds of receiving support from family and friends in tasks associated with personal care (OR = 0.17, 95% CI = 0.05–0.53, P = 0.002). To address gender differences in caregiving, a realistic home‐based palliative care approach must take into account the importance of informal caregivers.     

Family caregivers’ perceptions of hospital‐based allied health services post‐stroke: Use of the Measure of Processes of Care to investigate processes of care

Aim: To investigate family caregiver perceptions of allied health professional processes of care and support in hospital following stroke, and to test an adapted version of the Measure of Processes of Care (MPOC) for its suitability of use in the stroke care setting. Methods: The first stage involved the adaptation and refinement of the MPOC, designed to measure caregiver perceptions of processes of professional care and support across five care dimensions. The second stage involved mailing out of questionnaires to primary caregivers of stroke survivors. A total of 107 completed questionnaires were included in the analysis. The reliability of the adapted questionnaire was assessed and summary statistics were computed. Results: The reliability of the adapted MPOC was found to be high, with good internal consistency of items within each subscale. Mean scores indicated that caregivers were most likely to report negative perceptions of the way allied health professionals engaged with and supported them, particularly in the area of information provision. Conclusion: The number of families being affected by stroke is predicted to rise substantially in the near future. Allied health professionals have a significant role to play in supporting family caregivers. Results highlight caregiver‐identified areas of weakness in current clinical practice.     

The perspective of employers/families and care recipients of migrant live‐in caregivers: a scoping review

In high‐income countries, migrant live‐in caregivers are increasingly in demand to provide health and social care in the home. While there is a wide range of research on the perspectives of live‐in caregivers (including domestic workers) in destination countries, few studies address the perspective of families who hire them. The aim of this study was to explore the extent, range and nature of international literature on the needs and experiences of employers/families and care recipients of live‐in caregivers. We undertook a scoping review of the literature on this topic using Arksey and O'Malley's five stages. With the assistance of a health science librarian, a comprehensive search of nine databases was undertaken from April to July 2014. Two research assistants independently reviewed 2493 articles. The data were analysed through data charting, numerical summary and thematic analysis. Thirteen articles met the inclusion criteria for the scoping review. Many of these studies (n = 7) were conducted in Israel, and the majority (n = 8) focus on elderly care recipients. The findings reveal the diverse roles live‐in caregivers perform, including emotional and physical care; changes in family dynamics and roles upon hiring a live‐in caregiver; the negative experiences, including abuse, of live‐in caregivers and elderly care recipients; the positive outcomes for families with a live‐in caregiver; and families’ common perception that live‐in caregivers are like kin, a part of the family. Furthermore, evidence points to some degree of bi‐directional emotional support between caregivers and employers/families, which adds complexity to their relations and the negotiation of power.     

Predictors of caregiver burden across the home‐based palliative care trajectory in Ontario,Canada

Family caregivers of patients enrolled in home‐based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non‐modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n = 327) of patients with malignant neoplasm were recruited from two dedicated home‐based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi‐weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home‐care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0 years (SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non‐linear fashion from study admission to patient death. Increased monthly unpaid care‐giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non‐modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have benefits such as improved caregiver health outcomes, and enhancing their ability to meet care‐giving demands, thereby potentially allowing for longer patient care in the home setting.     

Strengthening Incarcerated Families: Evaluating a Pilot Program for Children of Incarcerated Parents and Their Caregivers

Parental incarceration can be devastating for families. Children may experience difficulties, and the stress on caregivers who take on unexpected childrearing is high. The authors implemented and evaluated a family‐level intervention with caregivers and children experiencing parental (typically maternal) incarceration in a community setting. The authors partnered with a community‐based organization serving families with an incarcerated parent to conduct a pilot trial of the Strengthening Families Program (SFP). Process evaluation indicated high implementation fidelity, satisfaction, engagement, and attendance. Outcome evaluation results indicated positive changes in family‐level functioning, caregivers' positive parenting, and caregiver depression symptoms from pre‐ to postintervention, with some changes retained at follow‐up 4 months later. Implications for preventive interventions with children of incarcerated parents and their caregivers, are discussed.     

REPORT FROM ITALY

Background: Increasing numbers of family caregivers are confronted with caring for a demented, community-dwelling relative. Living with, caring for, and supervising a demented older relative places a heavy burden on the involved family members. In particular, primary caregivers report increased strain, feelings of depression, and decreased general wellbeing as a direct consequence of care giving. Since the most common cause of failure of a home-care situation appears to be caregiver burnout, detecting critical, negative changes in the wellbeing of the caregiver is important. Methods: In a nationwide, cross-sectional study by the Belgium Social Security Board, a population of demented older patients and their care-giving relatives was investigated. The care situation and characteristics of demented, older patients and their caregivers were inventoried, and their effects on the wellbeing of caregivers were evaluated. Results: Approximately 30% (n = 28) of caregivers of demented, older relatives were depressed. Depression occurred independently of objective care characteristics and the mental and physical state of the demented patient. Rather, it was related to coping mechanisms and to the perceived burden reported by the caregiver.

Conclusion: Offering support and counsel to caregivers is an important issue in efficiently maintaining home-care situations.     

The Caregiver Quality of Life Cystic Fibrosis (CQOLCF) Scale: Modification and validation of an instrument to measure quality of life in cystic fibrosis family caregivers

Objective: Modify the Caregiver Quality of Life Index – Cancer (CQOLC) scale (Weitzner, Jacobsen et al. Qual Life Res 2000; 8: 55–63) as the Caregiver Quality of Life Cystic Fibrosis (CQOLCF) scale, validate it with cystic fibrosis (CF) family caregivers, and assess caregiver quality of life QOL with patient disease severity. Methods: Following modifications, 100 family caregivers were administered the CQOLCF. Construct validity was assessed by the Medical Outcomes Study Short Form (SF-36) and the Beck Depression Inventory (BDI). Pulmonary function scores and hospitalizations assessed relationship between caregiver QOL and patient disease severity. Results: Split-half reliability was 0.862 and internal consistency (Cronbach's ) was 0.909. As expected, there were relatively high correlations with the mental health (0.634) and emotional distress (–0.687); and low correlations with physical health (0.049). ANCOVA examined differences in the CQOLCF totals based on disease severity, controlling for age. Significant mean differences existed (days hospitalized F = 3.010, sig. = 0.022). Discussion: The CQOLCF appears to be a valid, reliable, and internally consistent disease-specific scale with CF family caregivers. Future research recommendations include administering the CQOLCF to an increased study sample to explore item factor analysis.     

Factors of Caregiver Isolation in a Rural Midwest Area

ABSTRACT

The authors, working with a Veterans Affairs Home Based Primary Care Team in rural areas of Illinois and Indiana, noted the relative social isolation of many family caregivers of patients. They explored several factors that could contribute to this isolation: values held by the caregiver, transportation restraints, limited caregiver resources and caregiver health. Caregiver values, such as obligation and responsibility, stood out, contributing to generally excellent care for the elderly veteran patients, but also to the observed isolation. A solution would be increased funding for in-home respite, to help the family caregivers get needed rest and outings, thus responding to an expressed need, and enhancing their ability to provide “low-tech” in-home care to their loved ones.     

Family caregiving in advanced chronic organ failure

ObjectivesTo assess caregiver burden as well as positive aspects of family caregiving in advanced chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF), and chronic renal failure (CRF).DesignCross-sectional observational study.SettingPatients recruited at the outpatient clinics of academic and general hospitals in the Netherlands.ParticipantsPatients with advanced COPD (n = 73), CHF (n = 45), and CRF (n = 41) and their family caregivers.MeasurementsCaregiver burden and positive aspects of caregiving were assessed using the Family Appraisal of Caregiving Questionnaire for Palliative Care and were compared among family caregivers of patients with COPD, CHF, or CRF using linear regression analysis while controlling for characteristics of patients and family caregivers.ResultsMost family caregivers were female partners of participating patients. Caregiver distress and caregiver strain scores were relatively low, whereas scores for positive caregiving appraisals and family well-being were relatively positive. Caregiver strain, positive caregiving appraisals, and family well-being were comparable for family caregivers of patients with COPD, CHF, or CRF. Caregiver distress was higher for family caregivers of patients with COPD than CHF. The experience of caregiving was influenced by being the patient's spouse, patient's psychological symptoms, and the presence of comorbidities.ConclusionsFamily caregiving for patients with COPD, CHF, or CRF should not only be seen as a burden, but also as a positive experience. To support family caregivers, attention should be paid to caregiver burden and the positive aspects of family caregiving.     

Informal Caregivers’ Use of the Internet for Caregiving Information

Using data extracted from the Caregiving in the U.S. 2009 survey, this study describes caregivers’ use of the Internet for caregiving information and identifies factors related to their use. This study includes 800 informal caregivers for community-residing older adults age 65 and over. In the study, more than one-half of caregivers searched online caregiving information. The results from an ordered logistic regression analysis showed that caregivers’ use of the Internet was significantly related to caregivers’ age, education, income, primary caregiver status, caregiving strain, self-reported health, and information/service needs. Implications of these findings are discussed.     

Screening behaviors for diabetic foot risk and their influencing factors among general practitioners: a cross-sectional study in Changsha,China

Background

Stroke is one of the leading causes of death and the main cause of long-term disability in the United States. The significant risk factors of stroke among Hispanics are well-documented. The majority of stroke survivors return home following a stroke and are cared for by family caregivers. Due to the abrupt nature of strokes, caregivers experience unexpected changes and demands that oftentimes lead to caregiver burden and depression. Given the significant risk factors for stroke in Hispanics and the influence of culture in family norms and family management, we developed a telephone and online problem-solving intervention for Spanish-speaking stroke caregivers. This study tests the impact of a telephone and online problem-solving intervention for Spanish-speaking stroke caregivers on caregiver outcomes.

Methods

The design is a two-arm parallel randomized clinical trial with repeated measures. We will enroll 290 caregivers from 3 Veterans Affairs (VA) medical centers. Participants randomized into the intervention arm receive a problem-solving intervention that uses telephone and online education and care management tools on the previously developed and nationally available RESCUE en Español Caregiver website. In the usual care group, participants receive the information and/or support caregivers of veterans with stroke normally receive through existing VA resources (e.g., stroke-related information and support). The primary outcome is change in caregiver’s depressive symptoms at 1- and 12-weeks post-intervention. Secondary outcomes include changes in stroke caregivers’ burden, self-efficacy, problem-solving, and health-related quality of life (HRQOL) and veterans’ functional abilities. We will also determine the budgetary impact, the acceptability of the intervention and participation barriers and facilitators for Spanish-speaking stroke caregivers.

Discussion

This is an ongoing study. It is the first known randomized controlled trial testing the effect of a telephone and online problem-solving intervention in Spanish for caregivers of veterans post-stroke. If successful, findings will support an evidence-based model that can be transported into clinical practice to improve the quality of caregiving post-stroke.

Trial registration

ClinicalTrials.gov: NCT03142841— Spanish Intervention for Caregivers of Veterans with Stroke (RESCUE Español). Registered on February 23, 2018. Protocol version 8. 08.11.2022.

     

Health status and work burden of Alzheimer patients’ informal caregivers: Comparisons of five different care programs in the European Union

Background: In 1998, a research study was conducted to compare existing programs in the European Union providing both care to people with senile dementia of the Alzheimer type, and support to their informal caregiver. Method: Five programs were selected in seven centres. Home social services (Denmark), Day centres (Germany), Expert Centres (Belgium, Spain), Group Living/Cantou (Sweden, France), Respite hospitalization (France). In each centre, 50 patients were randomly selected. The questionnaire addressed informal caregivers (or referents). It included the Nottingham Health Profile (NHP), the Zarit Scale, and it collected data on age, sex and position (spouse or child) of the informal caregiver, as well as age, level of mental deterioration and disabilities of the patient. Results: (n=322 subjects) Comparatively with caregivers of Respite hospitalization patients chosen as the reference, caregivers of patients cared by Group living/Cantou and Home social services experienced a significantly lower burden. The benefit from the Expert centre program concerned emotional reactions (depression) (odds RATIO=0.32; P=0.02) and work burden (Zarit) (OR=0.32; P=0.04). The main benefit for caregivers who received Day centre help was the important reduction of feelings of social isolation (OR=0.13; P=0.0003). Conclusions: The Group Living/Cantou program appeared as the most efficient way to reduce informal caregiver burden, independently from the country considered.     

Exploring employment as a space of respite and resistance for family caregivers

This paper challenges traditional definitions of work and leisure as separate concepts by suggesting that a space where individuals engage in employment (paid work) can, at the same time, be a space of respite (leisure) for employees who are also family caregivers. The research aims to better understand what caregivers perceive as ideal respite space, what that space means to them, how the space where employment takes place fits that ideal and what forces restrict caregivers’ ability to engage with employment as a space of respite. The term space is used because a caregiver's presence in a particular space (inside or outside of a place) gives it meaning that is simultaneously social, political and emotional. We report on a qualitative intrinsic case study of primary caregivers who are both employed and providing care to relatives with dementia. Using a reflective iterative process, 12 participants were recruited and interviewed from two Canadian provinces in 2013/14. Using a non‐temporal view of respite facilitated the identification of employment as an important space for caregivers to experience effective respite. Although this connection has been noted by other scholars, our research goes beyond this to identify four forces that create challenges for caregivers who want to maintain engagement with employment as a space of respite. These forces are internalised socialisation, family and organisational pressures and government policy. In addition, this research is one of the first to suggest ways that caregivers resist these forces. In concluding remarks, we reflect on the limitations of the study and offer suggestions for further research aimed at elucidating the spatiality of caregiver respite and the complex and dynamic aspects of resistance.     

“Caregiving is a full‐time job” impacting stroke caregivers' health and well‐being: A qualitative meta‐synthesis

Family caregivers contribute to the sustainability of healthcare systems. Stroke is a leading cause of adult disability and many people with stroke rely on caregiver support to return home and remain in the community. Research has demonstrated the importance of caregivers, but suggests that caregiving can have adverse consequences. Despite the body of qualitative stroke literature, there is little clarity about how to incorporate these findings into clinical practice. This review aimed to characterise stroke caregivers' experiences and the impact of these experiences on their health and well‐being. We conducted a qualitative meta‐synthesis. Four electronic databases were searched to identify original qualitative research examining stroke caregivers' experiences. In total, 4,481 citations were found, with 39 studies remaining after removing duplicates and applying inclusion and exclusions criteria. Articles were appraised for quality using the Critical Appraisal Skills Programme (CASP), coded using NVivo software, and analysed through thematic synthesis. One overarching theme, ‘caregiving is a full‐time job’ was identified, encompassing four sub‐themes: (a) restructured life, (b) altered relationships, (c) physical challenges, and (d) psychosocial challenges. Community and institution‐based clinicians should be aware of the physical and psychosocial consequences of caregiving and provide appropriate supports, such as education and respite, to optimise caregiver health and well‐being. Future research may build upon this study to identify caregivers in most need of support and the types of support needed across a broad range of health conditions.