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Carer characteristics

The following resources examine the characteristics and features of carers in different situations and relationships.

Click on the title of any resource to find out more about the source of the information such as the type of reference, ISBN/ISSN, publication year, keywords. A number of these fields can be used to find further resources i.e. with the same keywords, or by the same author using the links on the right-hand side and within the Key Information box.

You can also click on an author's name in the list below to find further resources by that author, and use the DOI and other links to access the original source material (note: some source materials require subscription or permission to access).
 

Positive aspect of caregiving among primary informal dementia caregivers in Singapore

Background The present study investigated the factor structure of positive aspects of caregiving (PAC) scale among primary informal caregivers providing care to persons with dementia (PWD) in Singapore. Methods 282 primary informal caregivers of PWD were recruited from the Institute of Mental Health, and Changi General Hospital and administered the 9-item PAC scale. A confirmatory factor analyses (CFA) was conducted to test the model fit of the 9-item PAC proposed by the scale developer and multiple linear regression was used to investigate the significant socio-demographic correlates. Results CFA showed that the 2-factor structure including ‘Self-Affirmation’ and ‘Outlook on Life’ had an acceptable model fit. After controlling for confounding variables, Malay caregivers were associated with higher scores on PAC and ‘Self-Affirmation’ compared to caregivers of other ethnicities. Caregivers with Secondary or below education level had higher PAC and ‘Outlook on Life’ scores. Caregivers who had received formal training scored higher in PAC, ‘Self-Affirmation’ and ‘Outlook on Life’. Discussion The present study confirmed that the 2-factor structure of the 9-item PAC was suitable for informal caregivers of PWD in Singapore. The findings have important implications for locally available interventions to enhance caregiver’s psychological well-being and reduce burden of care.

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Association of illness understanding with advance care planning and end-of-life care preferences for advanced cancer patients and their family members

Purpose: Little has been determined regarding the association between patients’ and families’ illness understanding and preferences for medical care. We aimed to evaluate the association of illness understanding with advance care planning (ACP) and preferences for end-of-life care, such as aggressive care, early palliative care (EPC), and hospice care, among advanced cancer patients and their family caregivers. Methods: Patients were recruited for a prospective cohort study at outpatient and inpatient facilities in nine university hospitals in Korea (n = 150), and their primary family caregivers were also asked to participate (n = 101). Data on ACP and end-of-life care preferences were collected only at baseline in the cohort study with optional questions and were used to analyze these study results. Results: Patients with illness understanding were more likely to have documented physician orders for life-sustaining treatment (POLSTs) (adjusted odds ratio [aOR] of 4.94) and to have discussed ACP with their families (aOR 2.15) than those who did not. Being expected to live for several months, they were unlikely to prefer active treatment. Caregivers understanding patients’ illness were more likely to write advance directives (ADs) and to discuss ACP; furthermore, they had already discussed ACP with family members. They did not prefer active treatment or life-sustaining treatments when their family members were expected to die within a few weeks. There was no significant association between illness understanding and preferences for EPC. Conclusion: Accurately recognizing an incurable disease is associated with preferences for more ACP and less aggressive care but not with preferences for EPC or hospice care among both advanced cancer patients and their family caregivers. 

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Understanding the Associations between Caregiver Characteristics and Cognitive Function of Adults with Cancer: A Scoping Review

Cognitive impairment (CI) is one of symptoms that adults with cancer frequently report. Although there are known factors that contribute to a patient's CI, these factors did not sufficiently explain its variability. Several studies conducted in patients with neurocognitive disorders have reported relationships between patients' cognitive function and caregiver characteristics, which are poorly understood in the context of cancer. This scoping review aims to map the literature on caregiver characteristics associated with CI in adults with cancer. We used the framework proposed by Arksey and O'Malley and PRISMA-Sc. Studies published in English by 2019 were searched through seven electronic databases. All retrieved citations were independently screened and eligibility for inclusion was determined by two independent authors. Ten studies met inclusion for this review with all of them showing significant associations between a patient's cognitive function and caregiver characteristics. Caregiver's mental health was the most commonly associated with a patient's cognitive function followed by family functioning, adaptation to illness, attitude toward disclosure of the illness, burden, coping and resilience, and demographic characteristics. These review findings suggest that enhanced information about CI in relation to caregiver characteristics will eventually provide the foundation for multifocal interventions for patients with impaired cognitive function. This scoping review identified caregiver characteristics that are associated with patients CI. These characteristics should be also assessed when health providers assess and treat CI of adults with cancer.

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The Influence of Caregiver Preparedness on Caregiver Contributions to Self-care in Heart Failure and the Mediating Role of Caregiver Confidence

BACKGROUND: Caregiver contributions (CC) to heart failure (HF) self-care maintenance (ie, CC to maintaining HF stability) and management (ie, CC to dealing with HF signs and symptoms) improve patient outcomes, but it is unknown whether caregiver preparedness influences CC to self-care and whether caregiver confidence mediates this process. OBJECTIVES: We evaluated the influence of caregiver preparedness on CC to HF self-care maintenance and management and the mediating role of caregiver confidence. METHODS: This is a secondary analysis of the MOTIVATE-HF study. Patients were 18 years or older, with a diagnosis of HF in New York Heart Association classes II to IV, who had insufficient self-care and did not have severe cognitive impairment. Patients' informal caregivers were those people inside or outside the family who gave most of the informal care to the patients. We used the Caregiver Preparedness Scale and the Caregiver Contribution to Self-Care of HF Index. We tested a path analysis model and the indirect effects. RESULTS: Caregivers (n = 323) were 55 (SD, 15) years old on average and predominantly female (77%). The path analysis showed that higher scores in caregiver preparedness were associated with higher scores in caregiver confidence. In turn, higher caregiver confidence was associated with higher CC to self-care maintenance and management. Caregiver confidence mediated the association between caregiver preparedness and CC to self-care maintenance and management. CONCLUSIONS: Caregiver confidence may play a role in CC to self-care. Interventions to improve CC to HF self-care should not only be focused on improving caregiver preparedness but also should consider the role of caregiver confidence.

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Association between family caregiver burden and affiliate stigma in the families of people with dementia

Family caregivers of people with dementia (PWD) have a heavy care burden. Affiliate stigma is the stigma internalized by individuals associated with PWD. Limited research has addressed the affiliate stigma among caregivers of PWD and its influence on caregiver burden. Thus, our study investigated the burden of caregivers of PWD and its relationship with affiliate stigma. In addition, we examined the factors related to affiliate stigma. This cross-sectional study was conducted in a general hospital in Taiwan. We recruited 270 PWD and their family caregivers from the outpatient department. Relevant demographic and clinical assessment data of the patients and caregivers were evaluated. Regression analysis was performed to examine the factors associated with affiliate stigma. In total, 23.7% of the family caregivers had depression and 37.4% had anxiety. Male caregivers had higher levels of anxiety and heavier care burdens related to affiliate stigma compared with female caregivers. Moreover, characteristics such as younger age and low levels of dependence in daily activities among PWD were associated with increased affiliate stigma. A higher family caregiver burden was related to more severe affiliate stigma. Interventions for decreasing the family caregiver burden might reduce the effect of affiliate stigma. 

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Trajectory of psychosocial measures amongst informal caregivers: Case-controlled study of 1375 informal caregivers from the English longitudinal Study of ageing

Informal caregivers provide vital support for older adults living in the community with chronic illnesses. The purpose of this study was to assess the psychosocial status of informal caregivers of community-dwelling adults over an eight-year period. Informal caregivers of adult care-recipients were identified from Wave 1 of the English Longitudinal Study of Ageing (ELSA) cohort. Multivariate regression analysis models were constructed to assess the association between participant's psychosocial characteristics and informal caregiving. Multilevel modelling explored the psychosocial changes between caregivers and non-caregivers over eight years. 1375 informal caregivers and 2750 age-matched non-caregivers were analyzed. Self-reported loneliness (Odd Ratio (OR): 0.26; 95% confidence intervals (CI): 0.01-0.51) and relationship status (OR: 0.36; 95% CI: 0.16-0.46) were independently associated with caregiving. Caregivers were more socially isolated with less holidaying abroad (OR: 0.51; 95% CI: 0.35-0.66), attendance to church (OR: 0.30; 95% CI: 0.11-0.49), or charity groups (OR: 0.35; 95% CI: 0.14-0.55). On multilevel analysis, over time (eight-years), caregivers reported greater loneliness (p < 0.01), change in relationship status (p = 0.01) and reduced control, autonomy, and pleasure (p ≤ 0.01) compared to non-caregivers. Given the deleterious effects caregiving can place on health and wellbeing, further interventions are required to improve these psychosocial factors.

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Eldercare hours, work hours and perceived filial obligations

In this paper, we take a fresh look at the magnitude of the trade-off between caring informally for a parent and paid work. We adopt a simultaneous approach with a primary focus on how hours of care are influenced by hours of work rather than the other way round. We also investigate the role that filial obligations play in choices of caring versus working. Using the SHARE data (2004 and 2006) we find that the elasticity of informal care hours in response to working hours is between −0.17 in the caregivers sample and −0.19 in the women-only caregivers sample; small but not negligible. Moreover, we find that a 10% increase in the index measuring the strength of filial obligations increases weekly hours of care by about two and a half hours. 

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Women with high level of education, victims of the care of people with Alzheimer's

The aim of this job is to know the existing relationship between the task of caring patients with Alzheimer's disease, caregivers' gender and their level of academic studies. Descriptive study, 69 persons diagnosed with Alzheimer's disease and their respective familiar caregivers as subjects of the study. Age, gender, academic level, burden, depression, anxiety level, quality of life and social loneliness have been measured in caregivers. Age, gender, dependency level and neuropsychological state have been measured in patients. Data collection was done in 2016. Logistic regression analysis was performed. Caregivers with high levels of academic studies suffer more burden, being women in their majority. They are more likely to present social loneliness and higher levels of anxiety and a worse quality of life than men. The burden may be due to a greater number of responsibilities to respond to, and to the inability to combine it with the role of caregiver. We can conclude that women become victims of caring Alzheimer' patients. 

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The Burden of Care: A National Survey on the Prevalence, Demographic Characteristics and Health Problems Among Young Adult Carers Attending Higher Education in Norway

Objective The aim of the present study was to examine prevalence, characteristics and health outcomes among young adults (18 to 25 years) who provide informal care to family members or others with physical or mental illnesses, substance misuse or disabilities. Design The sample was obtained from a national survey in Norway from 2018 among students in higher education (the SHoT2018-study). The current sample comprise 40,205 participants, 70.2% women, mean age 22 years (SD = 1.7). Outcome Measures Participants answered questions on care responsibilities, mental health problems (The Hopkins Symptoms Checklist-25), insomnia (sleep questionnaire), somatic health (Somatic Symptom Scale-8), and life satisfaction (Satisfaction With Life Scale). Results 5.5% of the respondents reported having care responsibilities. Caring was associated with being female, single, having divorced parents, being an immigrant, and having financial difficulties. More mental health problems, insomnia, somatic symptoms, and lower life satisfaction were found among respondents with care responsibilities. Number of hours of caring was associated with negative health outcomes in a dose-response pattern. Conclusion Professionals within health care, social services and the educational system should be sensitized to the needs of young adults with care responsibilities for family members or others with illness, substance misuse, or disabilities. The negative health problems among these young adult carers (YACs) should be acknowledged, and adequate support made available.

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Internalized stigma and its correlates among family caregivers of patients diagnosed with schizophrenia in Changsha, Hunan, China

Introduction Internalized stigma is prevalent among patients diagnosed with schizophrenia. Their family caregivers (FGs) also suffer from internalized stigma, but limited studies have addressed the issue. Aim The aim of this study was to determine the severity of internalized stigma and its correlates among FGs of patients diagnosed with schizophrenia in Changsha, Hunan, China. Methods A consecutive sample of 299 FGs was recruited at the psychiatric outpatient department of a tertiary hospital in Changsha. This study explored the relationships between internalized stigma and potential factors. Results Nearly 50% of the FGs perceived mild internalized stigma, 24% of the FGs reported moderate level, and 6% had a severe level. Internalized stigma was associated with patients’ characteristics (severity of illness) and FGs’ characteristics (hope, social support, passive coping, age, education background, residence with the patient, caring for a male or a young patient and difficulty in supervising medication). Discussion and implications for practice Informative and psychosocial interventions based on education and contact for FGs such as enhancing mental health literacy programs, cognitive therapies and group psychoeducation can provide FGs with a better understanding of schizophrenia and to promote hope, active coping and social support. 

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Knowledge, attitude and health-seeking behavior among family caregivers of mentally ill patients at Assiut University Hospitals: a cross-sectional study

Background: Mental illness is associated with misunderstanding and unfavorable attitude worldwide. The belief in its spiritual nature made traditional healers the main service consultants for mentally ill patients. The present study is a cross-sectional study conducted among 425 main family caregivers of mentally ill patients at Assiut University Hospital. The objective of the study was to assess the caregivers’ knowledge and attitude towards mental illness as well as their health-seeking behavior for their mentally ill relatives. Results: The studied caregivers had low scores of knowledge and attitude towards mental illness. Age of the caregivers, their education, and the type of first consulted care and aggressive behavior of the mentally ill relatives were the significant predictors of caregivers’ knowledge and attitude towards mental illness. The majority of caregivers (80.2%) sought advice for the first time from traditional healers. Traditional healers referred only 16.4% of caregivers’ mentally ill relatives to psychiatric care. Conclusion: The studied caregivers had poor knowledge and a negative attitude towards mental illness. Traditional healers were the main consulted care. So, increasing awareness of mental illness is highly recommended. 

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Caregiver Issues and Concerns Following TBI: A Review of the Literature and Future Directions

Survival following traumatic brain injury (TBI) has increased following advances in medical care. However, TBI survivors often experience significant deficits in cognitive function, psychological disturbance, and residual physical deficits. The caregivers for these survivors, who are often family members, may have limited capacity to provide the services and care that are required. Limitations in capacity may be attributable to poor preparation, increased burden, lack of appropriate resources, and lack of required support. Likewise, there are resultant consequences for the caregiver and the survivor. The purpose of this paper is to review issues associated with caregiver capacity including preparation, burden, burnout, and consequences. In the latter portion of the paper, assessment of caregiver readiness and understanding and intervention is described (as well as current limitations). The final portions of the paper describe future directions, the call for increased research, and medicolegal implications.

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Complexity of care: Stressors and strengths among low-income mother-daughter dyads

Research on informal care for older adults tends to consider middle- and upper-class individuals. Consequently, less is known about caregiving among low-income families. We present findings from an exploratory qualitative study of low-income African American mothers (n = 5) and their caregiving daughters (n = 5). Guided by a feminist framework, we consider how individual, familial, and societal factors contribute to the intersectional complexities of caregiving. Despite the unavailability of formal resources, we found the 10 women positive in their outlook. Furthermore, this study contributes to a growing body of research that identifies both negative and positive aspects of caregiving among an underrepresented population. 

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Who (still) cares? Patterns of informal caregiving to adult dependents in South Korea, 2006-2012

Provision of informal care is declining in South Korea. Informal caregiving is examined in South Korea using longitudinal data. The results are that women with a dependent disengage more from caregiving than men; caregivers are young rather than old, and more frequently live in rural areas. They receive more financial transfers from non-cohabiting relatives and have fewer children than non-caregivers with a dependent adult. Both caregivers and non-caregivers are less likely than those without a dependent adult to give money to non-cohabiting relatives. Educational level does not influence the probability of having a dependent relative or, among people with a dependent, of being a caregiver. Among people with a dependent adult, wage earners are more likely to provide care than the unemployed. The time spent in caregiving depends more on the dependent's demand than on the caregiver's capacity to provide support.

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Profiles of family caregivers of patients at the end of life at home: A Q-methodological study into family caregiver' support needs

Background: Family caregivers of patients at the end of life often experience care-related burden. To prevent caregiver burden and to enhance the capacity to provide care it is important to have insight in their support needs. The purpose of this study was to identify profiles of family caregivers who provide care to patients at the end of life at home. Methods: A Q-methodological study was conducted in which family caregivers ranked 40 statements on support needs and experiences with caregiving. Thereafter they explained their ranking in an interview. By-person factor analysis was used to analyse the rankings and qualitative data was used to support the choice of profiles. A set of 41 family caregivers with a variety on background characteristics who currently or recently provided care for someone at the end of life at home were included. Results: Four distinct profiles were identified; profile (1) those who want appreciation and an assigned contact person; profile (2) was bipolar. The positive pole (2+) comprised those who have supportive relationships and the negative pole (2-) those who wish for supportive relationships; profile (3) those who want information and practical support, and profile (4) those who need time off. The profiles reflect different support needs and experiences with caregiving. Conclusions: Family caregivers of patients at the end of life have varying support needs and one size does not fit all. The profiles are relevant for healthcare professionals and volunteers in palliative care as they provide an overview of the main support needs among family caregivers of patients near the end of life. This knowledge could help healthcare professionals giving support. 

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Support in the context of allogeneic hematopoietic stem cell transplantation - The perspectives of family caregivers

Background and aim: Family caregivers are often involved in helping recipients during allogeneic hematopoietic stem cell transplantation (allo-HSCT). Although the distress that often arises along the trajectory is evident to family caregivers, research on their perceptions of providing and receiving support is limited. The aim of this study was to explore family caregivers’ experiences of providing and receiving support during allo-HSCT. Method: Data were collected through semi-structured interviews with fourteen family caregivers 16 weeks after the recipient's allo-HSCT. Inductive qualitative content analysis was used to analyse the data. Results: The analysis revealed four generic categories that focus on prerequisites for family caregivers' ability to provide support: Individual characteristics influence the ability to be supportive, Social context influences the ability to be supportive, Medical information provides knowledge and a sense of participation and Interaction with the healthcare organization provides a sense of participation. These prerequisites are linked in the fifth generic category: Family caregivers' support is multifaceted and dependent on the recipient's health. Conclusions: Family caregivers’ risk of experiencing a stronger sense of uncertainty and lack of participation is higher in the absence of the above-mentioned prerequisites. Professional support is thus required, which implies that the healthcare organization is responsible for identifying the needs of each family caregiver and delivering individualized support. 

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Prediction of caregiver burden in amyotrophic lateral sclerosis: a machine learning approach using random forests applied to a cohort study

Objectives Amyotrophic lateral sclerosis (ALS) is a rare neurodegenerative disease that is characterised by the rapid degeneration of upper and lower motor neurons and has a fatal trajectory 3-4 years from symptom onset. Due to the nature of the condition patients with ALS require the assistance of informal caregivers whose task is demanding and can lead to high feelings of burden. This study aims to predict caregiver burden and identify related features using machine learning techniques. Design This included demographic and socioeconomic information, quality of life, anxiety and depression questionnaires, for patients and carers, resource use of patients and clinical information. The method used for prediction was the Random forest algorithm. Setting and participants This study investigates a cohort of 90 patients and their primary caregiver at three different time-points. The patients were attending the National ALS/Motor Neuron Disease Multidisciplinary Clinic at Beaumont Hospital, Dublin. Results The caregiver's quality of life and psychological distress were the most predictive features of burden (0.92 sensitivity and 0.78 specificity). The most predictive features for Clinical Decision Support model were associated with the weekly caregiving duties of the primary caregiver as well as their age and health and also the patient's physical functioning and age of onset. However, this model had a lower sensitivity and specificity score (0.84 and 0.72, respectively). The ability of patients without gastrostomy to cut food and handle utensils was also highly predictive of burden in this study. Generally, our models are better in predicting the high-risk category, and we suggest that information related to the caregiver's quality of life and psychological distress is required. Conclusion This work demonstrates a proof of concept of an informatics solution to identifying caregivers at risk of burden that could be incorporated into future care pathways.

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The Moral Resilience of Young People Who Care

This paper draws on findings from a qualitative study of the social wellbeing of young people caring for a close family member. The research makes a novel contribution to the international literature by examining the moral resilience of young adult carers. Focus groups or individual, semi-structured interviews were undertaken with fifteen young people in South-East England during 2018?2019. The paper explores whether young people with a seriously ill or disabled family member define and conduct themselves in moral terms and how they respond to the moral challenges of a caring life. It was found that the participants saw moral value in their caring role and their actions reflected a desire to provide compassionate care. Previous research into young adult carers had indicated that the caring role stimulated their political consciousness, but this study suggests that the role also strengthens their moral consciousness. However, designating girls as carers in early life shifts the moral responsibility to females and compounds gender inequity in caring. Hence, there is a need to address social and gender inequalities in care. In addition, healthcare professionals should recognise when statutory input is necessary to facilitate young people's broader lifeplans.

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The COVID-19 Pandemic: Challenges and opportunities for carers in NSW

Carers NSW has been closely monitoring COVID-19 developments in NSW, the ongoing government response and the wide ranging impacts the virus and associated social distancing requirements have had on carers. Carers have experienced a variety of impacts, both in relation to the people they care for and in relation to their own health and overall wellbeing. Many carers provide care and support to people who are in higher risk categories, and many are in higher risk categories themselves due to age or an existing health condition. These factors have resulted in complexities surrounding provision of care, particularly in maintaining social distancing.  [...]

Carers NSW determined that it was crucial to hear directly from carers and other key stakeholders in order to gain a clear and accurate picture of the key issues, challenges and opportunities for carers during the pandemic. This report identifies the key findings of consultation conducted to inform Carers NSW service adjustments and systemic advocacy. 

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Caring behind closed doors: Forgotten families in the coronavirus outbreak

Carers UK carried out an online survey between 3rd April and 14th April 2020. A total of 5,047 carers and former carers responded to the survey. This included 4,830 current carers and 217 former carers. Compared to the carer population as a whole, respondents to this survey were more likely to be female and caring for a high number of hours every week. As not all respondents completed every question in the survey, a number of the figures given in this report, including those presented here, are based upon responses from fewer than 5,047 carers.

Of current carers responding to the survey:

  • 67% live in England, 19% live in Scotland, 9% live in Northern Ireland, and 6% live in Wales.
  • 81% identify as female and 18% identify as male.
  • 23% consider themselves to have a disability.
  • 1% are aged 0–24, 4% are aged 25–34, 13% are aged 35–44, 27% are aged 45–54, 32% are aged 55– 64, 17% are aged 65–74, and 5% are aged 75 and over.
  • 4% identified as lesbian, gay or bisexual.
  • 4% described their ethnicity as black or minority ethnic.
  • 18% also have childcare responsibilities for a nondisabled child under 18.
  • 36% have been caring for 15 years or more, 17% for between 10–14 years, 24% for 5–9 years, 20% for 1–4 years, 2% for less than one year and just 1% have been caring since the beginning of the coronavirus outbreak. 
  • Most (71%) care for one person, 20% care for two people, 6% for three people, and 2% care for four or more people. 
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Covid-19 pandemic: 4.5 million become unpaid carers in a matter of weeks

New figures released for Carers Week (8th – 14th June 2020) show an estimated 4.5 million people in the UK have become unpaid carers as a result of the Covid-19 pandemic. This is on top of the 9.1 million unpaid carers who were already caring before the outbreak, bringing the total to 13.6 million.

2.7 million women (59%) and 1.8 million men (41%) have started caring for relatives who are older, disabled or living with a physical or mental illness. Typically, they will have been supporting loved ones from afar, helping with food shopping, collecting medicine, managing finances and providing reassurance and emotional support during the pandemic. Some will have taken on intense caring roles, helping with tasks such as personal care, moving around the home, administering medication and preparing meals.

2.8 million people (62%) who have started caring since the outbreak are also juggling paid work alongside their caring responsibilities, highlighting the need for working carers to be supported as they return to offices and work sites.

The six charities supporting Carers Week - Carers UK, Age UK, Carers Trust, Motor Neurone Disease Association, Oxfam GB and Rethink Mental Illness – are calling on the UK Government to recognise and raise awareness of the role unpaid carers are playing during the pandemic and ensure they are supported through it, and beyond.

Both unpaid carers (71%) and adults without caring responsibilities (70%) said managing the stress and responsibility of being an unpaid carer was/ would be the top challenge when caring. Families are under a huge amount of pressure managing their caring roles and are worried about how they will cope in the weeks and months ahead.

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Preliminary Evidence for the Validity of the Family Caregiver Identity Scale

The purpose of this study was to develop and evaluate the Family Caregiver Identity Scale (FCIS), an instrument designed to measure the extent to which an individual identifies with the family caregiver role. The process of instrument development outlined in the Standards for Educational and Psychological Testing was combined with Dillman's four stages of pretesting. This was a multistage, iterative process, including several revisions based on feedback from experts, interviews, and pilot testing. Factor analyses were performed to test the hypothesized model of caregiver identity. A version of the FCIS consisting of 18 items was created and demonstrated initial evidence of validity. The FCIS will enable gerontological professionals to assess caregiver identity. The absence of caregiver identity is a factor in caregivers not accessing support services. This study contributes to the growing body of research connecting caregiver identity and support service utilization by caregivers.

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Predictors of Depressive Symptoms in Heart Failure Caregivers

Heart failure is a serious and complex chronic illness and family caregivers often assist these individuals in performing self-care. Unsurprisingly, caregivers often are overwhelmed by daily activities associated with heart failure management and frequently have depressive symptoms. This study examined predictors (i.e., sociodemographic and clinical characteristics, social support, social problem-solving, family functioning, and objective and subjective burden) of depressive symptoms in 530 informal caregivers of individuals with heart failure in a large cross-sectional, descriptive study in the community. Younger caregivers who provided care for longer periods of time, lived in rural areas, and had less social support and lower problem-solving skills were more likely to have depressive symptoms. These findings emphasize the need for further studies to develop dynamic and innovative approaches that incorporate multiple components to lessen caregiving challenges. Social support and problem-solving skills training may be useful components to lessen depressive symptoms in these younger, rural caregivers.

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Predicting self-esteem in informal caregivers of people with dementia: Modifiable and non-modifiable factors

While informal caregivers often feel burdened by the care for a person with dementia, they can also experience positive consequences due to caregiving; caregiver gains. One of these, relatively overlooked, caregiver gains is heightened self-esteem. We assessed the predictive ability of non-modifiable (caregiver sociodemographic- and dementia related-) and modifiable (psychological-) factors for caregiver self-esteem). A cross-sectional study in which 201 caregivers, who spent at least eight hours a week on caring for a community-residing person with dementia, completed a semi-structured interview and five questionnaires. One two-block (1: non-modifiable-; 2: modifiable variables) hierarchic multiple regression analysis was used to assess which variables predicted self-esteem. None of the non-modifiable variables significantly predicted self-esteem. Regarding the modifiable variables, depression and relationship quality with the person with dementia significantly predicted self-esteem (adjusted R2 = .460, β = -.207, p = .015 and β = .632, p < .001 respectively). Caregivers who experience a better relationship quality with the person with dementia, and fewer depression symptoms, experience a higher level of self-esteem. Interventions focused on heightening self-esteem should strive to optimize these factors to enhance the lives of informal dementia caregivers.

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Informal caregiving for dementia patients: the contribution of patient characteristics and behaviours to caregiver burden

Objectives The burden often associated with informal caregiving for patients with dementia is associated with negative effects on health, both physiologically and in terms of caregiver cognition. There is wide variation in the level of burden experienced by dementia caregivers. To better understand caregiver burden, it is thus important to understand the factors associated with level of burden. Methods In the current study, we collected carer burden and putative associated factors at baseline, 6 and 12 months. Hierarchical regression was used to assess the impact of these factors on caregiver burden. We assessed self-reported carer burden, patient behavioural and safety issues, and level of difficulty associated with providing assistance with activities of daily living (ADL). Patients' age was also recorded, and trained nurses assessed patient cognitive performance using the quick mild cognitive impairment screen. Results At baseline, patients' age, cognition and ADLs were associated with burden, and safety and challenging behaviour were both significantly associated with burden independent of the other factors. Change in burden was associated with change in carer-reported safety at 6-month follow-up, and with change in safety and change in carer-reported challenging behaviours at 12-month follow-up. Conclusions Safety issues and challenging behaviours are associated with carer burden, even after accounting for cognitive and functional impairment in the person with dementia. As dementia progresses, monitoring these factors may help to inform stress-management strategies for caregivers.

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Increasing self-efficacy and knowledge in carer training: Hispanic versus Caucasian

Aim: Nurses are teachers to their patients and need to know best practices for diverse families living with dementia. Little is known about Hispanic beliefs around dementia knowledge and self-efficacy that may have an impact on the learning situation. Design: A pre-/postresearch design was used in this intervention study with a baseline assessment of dementia knowledge and caregiver self-efficacy and a reassessment at training completion. Methods: Investigation of education training with two caregiver groups caring for persons with dementia: Caucasian and Hispanic. Convenience sample consisted of 567 Caucasians and 104 Hispanic dementia caregivers. Groups received training in their primary language accompanied by a training book (Dealing with Dementia Guide) also in the primary language. Results: Dementia knowledge and caregiver self-efficacy increased in both groups with the Hispanic group demonstrating significantly greater increase in self-efficacy. The Caucasian group had a significantly greater increase in the dementia knowledge compared with the Hispanic group.

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How Do Military Family Caregivers Who Completed a Supportive Intervention Differ From Those Who Dropped Out?

Background. To create efficacious interventions for military family caregivers (MFCs), it is important to understand the characteristics and predictors of completers and dropouts of newly developed supportive interventions. Aim. The purpose of this study was to examine completion patterns in MFCs enrolled in an educational intervention feasibility study. Method. Baseline data are presented from MFC completers (n = 64) and dropouts (n = 60) of a national feasibility study for an innovative intervention. Measures include depression (Patient Health Questionnaire-2), anxiety (Generalized Anxiety Disorder-7), somatic symptoms (Patient Health Questionnaire-15), quality of life (World Health Organization Quality of Life-Brief), relationship satisfaction (Relationship Assessment Scale), and military care recipient number of injuries. Analysis of variance was used to evaluate differences between completers and dropouts and logistic regression was used to identify predictors of intervention completion. Results. Results indicated that MFCs with greater anxiety, χ2(3) = 10.33, p = .02; depression, χ2(1) = 8.18, p = .004; somatic symptoms, F(1, 106) = 6.26, p = .01; care recipient number of injuries, F(1, 118) = 16.31, p < .001; lower general satisfaction with treatment, F(1, 96) = 4.34, p = .04; and lower satisfaction with accessibility and convenience with treatment, F(1, 89) = 4.18, p = .04, were significantly more likely to complete the intervention. After multivariate analysis, the sole predictor of intervention completion was the number of care recipients' injuries, χ2(6) = 14.89, N = 77, p < .05. Conclusions. Overall, findings indicate that MFCs who were more "at risk" were more likely to complete the intervention. Findings present patterns of intervention completion and provide insight on areas in need of further investigation on intervention development supporting the needs of MFCs.

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Hope predicted quality of life in dyads of community-dwelling patients receiving hemodialysis and their family caregivers

Purpose: End-stage renal disease (ESRD) patients on hemodialysis (HD) and their family caregivers (FCGs) reported poor quality of life (QoL). Hope has shown association with QoL at the individual level. However, the association between hope and QoL in dyads has never been examined in particular in dyads of patients and FCGs. The purpose of this study was to examine the associations between hope and QoL in dyads of ESRD patients on HD and their family caregivers (FCGs). Methods: This was a cross-sectional study in which data were collected from 123 community-dwelling patient-FCG dyads. Hope was measured using the Herth Hope Index and QoL was measured using the World Health Organization Quality of Life BREF. The Actor-Partner Interdependence Model multilevel modeling dyadic analysis approach was used to analyze the data. Results: Each individual's hope scores predicted their own better QoL scores. Patients' hope scores predicted better Environmental domain QoL in FCGs. Conclusion: All domains of QoL of patients and their FCGs are related to their own level of hope. Better FCGs' environment domain of QoL was linked to high patients' levels of hope. Improving QoL may be achieved by targeting and improving hope in both members of the dyad.

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Emotional Suppression and Hypervigilance in Military Caregivers: Relationship to Negative and Positive Affect

Objective: To investigate the relationship of 2 health-related quality-of-life (QOL) item banks (Emotional Suppression and Caregiver Vigilance), developed for caregivers of service members/veterans with traumatic brain injury (TBI), to caregivers' positive and negative affect.; Setting: Community.; Participants: One hundred sixty-five caregivers of service members/veterans with TBI.; Design: Retrospective database analysis.; Main Measures: TBI-CareQOL Emotional Suppression; TBI-CareQOL Caregiver Vigilance; measures of negative (Patient-Reported Outcomes Measurement Information System [PROMIS] Depression, PROMIS Anger, TBI-CareQOL Caregiver-Specific Anxiety, National Institutes of Health Toolbox [NIHTB] Perceived Stress, GAD-7) and positive affect (Neuro-QOL Positive Affect and Well-being, NIHTB Self-efficacy, NIHTB General Life Satisfaction, Family Resilience Scale for Veterans, TBI-QOL Resilience).; Results: When considered separately, linear regression showed that higher levels of Emotional Suppression and greater Caregiver Vigilance were individually associated with more negative affect and less positive affect. When considered together, the pattern of findings was generally consistent for both Emotional Suppression and Caregiver Vigilance with regard to negative affect and for Emotional Suppression with regard to positive affect. However, when considered together, Caregiver Vigilance was no longer related to positive affect.; Conclusions: Caregivers with high emotional suppression and/or vigilance are more likely to show emotional distress and less likely to have positive affect than caregivers with lower levels of emotional suppression and vigilance. A combination of education and individual counseling targeting coping with negative emotions and TBI-related problems may be beneficial.

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Do caregiver profiles predict the use of dementia care services? Findings from the Actifcare study

Objectives: Previously developed dementia caregiver profiles defined by caregiver age and burden, have been associated with caregiver quality of life, depression and perseverance time. The current aim was to investigate whether these caregiver profiles could predict subsequent service use. In addition, non-personal (e.g. meals on wheels) and supportive services (e.g. Alzheimer café) in early dementia were investigated as predictors. Methods: A total of 451 dyads of people with dementia and their informal caregivers from eight European countries were followed for one year. People were included if they did not use formal (personal) care but were expected to do so within 1 year. Logistic regression analyses were used with four clusters of service use as dependent variables (home social care, home personal care, day care and admission). The independent variables were caregiver profiles, and non-personal and supportive services at baseline. Results: Caregiver profiles were significant predictors of service use; those experiencing high strain were more likely to use formal care. The use of low-intensity, less intrusive services at baseline significantly predicted the use of home personal care and admission at follow-up. The use of day care at follow-up was predicted by the baseline use of supportive services. Conclusion: Caregiver profiles are valuable predictors for service use: this knowledge can aid professionals in ensuring optimal access to services, which is important for maintaining independence at home. In addition, the use of supportive and less intrusive, non-personal services in the early stages of dementia is to be advised. 

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Development and validation of 'caring ability of family caregivers of patients with cancer scale (CAFCPCS)'

Aim: Family caregivers have limited abilities that make them vulnerable to the care needs of patients. Therefore, it seems necessary to evaluate their caring ability. The aim of this study was to design an instrument for assessing the caring ability of family caregivers of cancer patients.; Methods: This was a sequential exploratory mixed-method study, carried out in two qualitative and quantitative phases. The concept of caring ability and its dimensions were explained using conventional content analysis in the qualitative phase. The research participants included 41 family caregivers of cancer patients and professional caregivers who were selected using purposeful sampling method until reaching data saturation. The scale items were designed using the results of the qualitative phase of the study, as well as the review of relevant literature. In the quantitative phase, the scale was validated using content and face validity, construct validity, as well as internal consistency and stability.; Results: The primary item pool was prepared in 108 items. Content validity was determined using CVR with a cut-off point (0.62), CVI with a cut-off point (0.8) and kappa coefficient (κ) (>0.75). The validity of 72 items was confirmed. Then, the overlapping items were merged and eventually the 45-item scale entered the face validity stage and five items with an impact factor < 1.5 were omitted. Results of KMO = 0.904 and Bartlett = 6184.012 (p < 0.001) justified the need for factor analysis. Scree plot indicates five factors with eigenvalues above 1 and 67.7% of the total variance, including 'Effective role play, Fatigue and Surrender, Trust, Uncertainty, and Caring ignorance'. Reliability of the 31-item instrument indicated a Cronbach's alpha coefficient of 0.93 and ICC of 0.94.; Conclusions: Caring abilities scale (CAI) of family caregivers of patients with cancer is a valid and reliable instrument that can assess caregivers' caring ability.

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Caregiver identity theory and predictors of burden and depression: Findings from the REACH II study

Objective: To examine the relationship between care recipient (person with Alzheimer's disease) ability to perform daily tasks and caregivers' (CG) perceived burden and depression, guided by the caregiver identity theory. We also examine the mediating effect of CG abilities to meet their basic needs. Methods: This study utilizes the baseline data of the REACH II study. Spearman's rho (ρ) was used to test for relationships between burden, reported depression, and each ADLs and IADLs. To further explore the relationship between burden and each ADLs and IADLs, structural equation modeling was conducted using Mplus 8.0. Results: Reported CG total scores indicated increased perceived CG burden with greater number of assisted daily activities. CG depression scores were significantly predicted by reported burden scores and caregiver's ability to pay for basic needs. Importantly, 34.6% of variation in CG reported depressions scores were explained by reported burden scores. A multivariate regression model with reported burden scores, controlling for caregiver's ability to pay for basic needs, explained 36.6% of the variance in CG depression scores. Burden scores and CG ability to pay for basic needs significantly predicted depression scores. Results from the three models indicated that CG burden fully mediated the relationship between daily living skill scores and CG depression. Conclusion: Our study findings suggest the need to more closely examine the link between AD caregiving, financial instability, and mental health and bolster support for policies and programs that offer tangible supports and services to offset the costs of informal AD CG.

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Alexithymia in Family Caregivers of Advanced Cancer Patients Is Associated with High Personalized Pain Goal Scores: A Pilot Study

Background: Alexithymia, or difficulty identifying and describing emotions and sensations, contributes to an increased risk of chronic pain, and low help-seeking. Objective: To investigate whether family caregivers of advanced cancer patients visiting a palliative care department had alexithymia, and whether this was related to their pain intensity, personalized pain goals, and help-seeking for chronic musculoskeletal pain. Design: A single-center cross-sectional survey. Measurements: Pain intensity was evaluated using a numerical rating scale. Pain improvement was evaluated against personal goals. Alexithymia was assessed using the Toronto Alexithymia Scale-20 (TAS-20), and anxiety and depression using the Hospital Anxiety and Depression Scale. Setting/Subjects: Of 320 family caregivers visiting the palliative care department, 152 (47.5%) had chronic musculoskeletal pain; all 152 were included in the study. Results: Alexithymia was observed in 36.2% of participants. Participants with higher scores on the TAS-20 tended to have higher pain intensity scores and personal pain goal scores. TAS-20 score had the strongest correlation with personal pain goals, with a correlation coefficient of 0.555 (p < 0.001). Conclusions: Pain intensity in family caregivers with alexithymia tended to be high. These participants set higher personal pain goals (lower goals for symptom improvement) than those without alexithymia. We found no difference in personal pain goal response between family caregivers with and without alexithymia. When we examine pain in family members with alexithymia who are caring for cancer patients, we need to recognize that they may set higher personal pain goals and seek less help.

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Health literacy of caregivers of adult care recipients: A systematic scoping review

Caregivers play a vital role in providing support to adults with a chronic condition, or cognitive or physical impairment. Low health literacy in caregivers has the potential to impact adequate care provision, and consequently, care recipient health outcomes. The aim of the study was to systematically review literature related to health literacy of caregivers of adult care recipients, and examine its relationship with care recipient, and caregiver, health outcomes. Electronic databases were searched for relevant English-language publications that assessed health literacy in caregivers. Included studies were abstracted into evidence tables and assessed using an eight-item quality scale. The search identified 2717 new titles and abstracts, with 67 shortlisted for full review. Twelve papers from 2003 to 2015 met the inclusion criteria. The prevalence of limited health literacy in caregivers ranged from 0% to 52.5% depending on the measure and cut-off criteria used. Associations were found between low caregiver health literacy and (i) poorer care recipient self-management behaviours; (ii) increased care recipient use of health services; and (iii) increased caregiver burden. The quality of the studies ranged from fair to excellent. Low health literacy in caregivers differed depending on the measures and scoring criteria used. Evidence to support the relationship between caregiver health literacy and care recipient, and caregiver health outcomes was limited to single studies. Recommendations for further research include: the development of caregiver health literacy measures across different populations; examination of associations between caregiver health literacy and care recipient outcomes; and the development of interventions designed to improve caregiver health literacy.

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The relationships among insecure attachment, social support and psychological experiences in family caregivers of cancer inpatients

Purpose: To explore the psychological experiences of the family caregivers of inpatients with gastric cancer or colorectal cancer, and to identify the relationships among insecure attachment, social support, and psychological experiences. Methods: The study design is a cross-sectional quantitative study collecting data through the use of four questionnaires, including the Hospital Anxiety & Depression Scale, the Self-esteem subscale of the Caregiver Reaction Assessment Scale, the Experience in Close Relationship Scale and the Social Support Rating Scale. Hierarchical regression analysis and path analysis were used to analyze the collected data. Results: Data from 207 participants was used. Family caregivers had experienced both depression and high self-esteem. Social support has significant direct effects on both depression and self-esteem. Attachment anxiety had direct effects on depression and social support, attachment avoidance had direct effects on self-esteem and social support. Social support has mediated the relationship between adult attachment and psychological experiences. Conclusions: Caregivers had experienced both negative and positive psychological outcomes. There were differences in the effects of insecure attachment on psychological experiences. Social support plays an important role in the relationships among insecure attachment, depression, and self-esteem. Insecure attachment styles and social support should be considered in tailored interventions for family caregivers to reduce their depression and enhance their self-esteem. 

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Worry about Performance: Unravelling the Relationship between 'Doing More' and 'Doing Better'

Objective: Recent studies have described worry about caregiver performance (WaP) as a distinct dimension of caregiver burden. We aimed to explore care recipient and caregiver characteristics between the concordant and discordant WaP groups in a population of caregivers of older adults with cognitive impairment. The secondary objective is to explore if there are differences between high and low WaP subsets in the 'doing more' and 'doing better' groups. Design, setting and participants: This is a retrospective study of 936 dyads of community-dwelling older adults with cognitive complaints and their primary family caregiver from a hospital in Singapore. Measurements: We performed descriptive and inferential statistics of the characteristics of caregivers and patients. We categorized caregiver-patient dyads into four groups, namely concordant (high vs low WaP) and discordant ('doing more' vs 'doing better') groups. For both concordant and discordant groups, we further defined low and high WaP subgroups using tertile cutoffs. Results: The concordant low WaP group is predicted by the spousal relationship (p<.001) and care recipients with fewer neuropsychiatric symptoms (p<.001). There is no significant difference between the discordant groups, which were predominantly the adult children. Further analysis of subgroups found that in the 'doing better' group, there were more spouses in the high as compared to low WaP subgroups, with the reverse true in the 'doing more' group. In the 'doing more' group, caregivers with high WaP also had higher total ZBI (p<0.05) with higher factors (Fl, F2 and F3) scores (p<0.05). They also endorsed higher NPI-Q scores (p=0.045) particularly in the domain of depression / dysphoria (p=0.034). These differences are not seen in the 'doing better' group. Conclusion: Our study suggests an association with caregiver characteristics (adult child) and disruptive behavior in the 'do more' high WaP discordant group. Delineating into the high and low WaP subgroups can help us identify the 'do more' high WaP subgroup that merits further attention and early intervention.

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When Distress Becomes Somatic: Dementia Family Caregivers' Distress and Genetic Vulnerability to Pain and Sleep Problems

Background and Objectives Stress can trigger physical pain and disturb sleep. Whether dementia family caregivers experience heightened pain is unknown. Cycles of unwanted thoughts about caregiving stressors and avoidance of these thoughts—that is, caregiving-related distress—may exacerbate both pain and sleep disturbances, and genetic susceptibility to stress may further modulate these associations. Research Design and Methods Dementia caregivers (72 spouses, 58 adult children, ages 34–89) rated the extent to which they experienced unintended thoughts about caregiving and tried to suppress such thoughts. They also reported their pain levels, sleep problems, and depressive symptoms. Peripheral blood leukocytes were genotyped for 5-HTTLPR (serotonin-transporter-linked polymorphic region) and 5-HT1A receptor polymorphism rs6295 on the 5HTR1A locus. Results Short-allele carriers for 5-HTTLPR experienced more pain and sleep problems in association with greater caregiving-related distress than those with other genotypes. For rs6295, C carriers also showed the strongest links between distress and sleep problems. Those who experienced more avoidance and intrusive thoughts about caregiving had more severe depressive symptoms, consistent with past work. Discussion and Implications Caregivers' genetic profiles helped to explain whether caregiving-related distress predicted worse pain and sleep problems. These data reveal new somatic risks of caregiver distress and provide targets for intervention. According to plasticity theories, caregivers genetically predisposed to greater stress reactivity may also respond particularly well to interventions, and many brief treatments may effectively address caregivers' intrusions and avoidance. 

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What motivates informal caregivers of people with dementia (PWD): a qualitative study

Background: The burden of caring for People with Dementia (PWD) is heavy; identifying incentives that motivate them in providing care is essential in facilitating and optimizing care. This study aims to explore and describe these motivating factors. Methods: We conducted this qualitative study between January 2016 and January 2017 in Isfahan, Iran. Data were extracted through in-depth, semi-structured interviews with 19 caregivers of PWD. These data were then examined through thematic content analysis. Results: We identified four categories of psychological motives based on the caregivers' feedback and experience. These include 1) Moral-based motives, 2) Religious, and spiritual motives; 3) Financial motives, and 4) Wicked motives. Conclusions: Our results revealed several aspects of caregivers' motives. They include moral, religious, and spiritual aspects; sharing housing accommodations, and the likelihood of inheriting a portion of the patient's assets based on unspoken rules and informal arrangements in the family, and wicked and immoral aspects. These findings can inform future efforts in enhancing the experiences of caregivers of PWD, and subsequently, the quality of care these patients receive. It further suggests that family members, members of a religious and spiritual organization, as well as social media, could play important roles in setting the stage. 

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What influences the use of professional home care for individuals with spinal cord injury? A cross-sectional study on family caregivers

Study Design: Cross-sectional survey.; Objective: The objective of this study is to identify what characteristics of the family caregivers influenced the use of professional home care for persons with SCI in Switzerland.; Setting: Community setting, nationwide in Switzerland.; Methods: Questionnaires were filled out by the adult family caregivers of persons with SCI. Influence of characteristics of the caregivers was analyzed with regression models, adjusting for the characteristics of the person with SCI. Logistic regression was used for whether professional home care was used. Poisson regression was applied for the absolute and relative amount of professional home care.; Results: In total, 717 family caregivers participated in the study (31% response rate). Among the participants, 33% hired professional home care for 10 h per week on average. The level of dependency of the persons with SCI had a significant influence on the utilization of care. The availability and proximity of the primary family caregiver, namely being spouse and cohabiting, reduced the amount of services used, whereas caregivers who worked full time employed more services. Higher levels of education and income increased the use of professional home care. Compared with their reference groups, caregivers with older age and those with a migratory background used comparable or larger absolute amount of professional services, which, however, represented a smaller proportion of total hours of care.; Conclusions: Adequate support requires consideration of the characteristics of both the caregiver and of the person with SCI. The needs of family caregivers should also be assessed systematically in the needs assessment.

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Variation in health literacy among family caregiver communication types

Objective: Previously, four caregiver types have been identified as a result of communication patterns between patient and caregiver, revealing unique caregiver information needs and preferences. The purpose of this study was to explore variation in health literacy among the four family caregiver communication types: manager, partner, carrier, and lone caregivers. Methods: The sample consisted of 115 cancer caregivers. Participants completed the Family Caregiver Communication Tool and the Health Literacy of Caregivers Scale-Cancer. Results: A significant difference in health literacy domains was found between caregiver types for cancer-related communication with the care recipient (P = .038) and understanding of the health care system (P = .003). Of the health literacy domains, mean scores were highest on understanding the health care system for both lone and carrier caregivers. Manager and partner caregivers were highest on the social support domain. The self-care domain was lowest for the carrier, lone, and manager caregivers. Conclusions: There was a variation across health literacy domains among caregiver communication types, further validating the Family Caregiver Communication Typology. Findings showed a need for educational programs for cancer caregivers to strengthen their health literacy skills. As cancer caregivers have a prominent role in the delivery and quality of cancer care, it is pivotal for health care centers to provide caregiver communication training and support. 

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Unmet needs in community-living persons with dementia are common, often non-medical and related to patient and caregiver characteristics

Objective: Understanding which characteristics of persons with dementia (PWD) and their caregivers are associated with unmet needs can inform strategies to address those needs. Our purpose was to determine the percentage of PWD having unmet needs and significant correlates of unmet needs in PWD. Design: Cross-sectional data were analyzed using bivariate and hierarchical multiple linear regression analyses. Setting: Participants lived in the greater Baltimore, Maryland and Washington DC suburban area. Participants: A sample of 646 community-living PWD and their informal caregivers participated in an in-home assessment of dementia-related needs. Measurements: Unmet needs were identified using the Johns Hopkins Dementia Care Needs Assessment. Correlates of unmet needs were determined using demographic, socioeconomic, clinical, functional and quality of life characteristics of the PWD and their caregivers. Results: PWD had a mean of 10.6 (±4.8) unmet needs out of 43 items (24.8%). Unmet needs were most common in Home/Personal Safety (97.4%), General Health Care (83.1%), and Daily Activities (73.2%) domains. Higher unmet needs were significantly related to non-white race, lower education, higher cognitive function, more neuropsychiatric symptoms, lower quality of life in PWD, and having caregivers with lower education or who spent fewer hours/week with the PWD. Conclusions: Unmet needs are common in community-living PWD, and most are non-medical. Home-based dementia care can identify and address PWD's unmet needs by focusing on care recipients and caregivers to enable PWD to remain safely at home.

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Uncertainty in illness in family caregivers of palliative care patients and associated factors

Objective: to describe the level of uncertainty in illness in family caregivers of palliative care patients and detect associations between the profile of the caregiver and the levels of uncertainty.; Method: descriptive correlational study conducted with 300 family caregivers of hospitalized patients. The sociodemographic characterization of caregiver and patient was used to assess the caregiver profile, as well as the Uncertainty in Illness scale for family caregivers. Spearman's Rho correlation test was applied to detect associations.; Results: the average score of illness uncertainty was 91.7 points. The analysis showed significant correlations between the level of uncertainty and patient dependence (r=0.18, p=0.001), symptom assessment (r=0.312, p<0.001), length of service as a caregiver (r=0.131, p=0.023), perception of support from health professionals (r=-0.16, p=0.048), family (r=-0.145, p=0.012) and religious support (r=-0.131, p=0.050).; Conclusions: there were high levels of uncertainty in caregivers about their patient's illness. These levels are associated with the health condition and symptoms of the patient who is cared for, the length of service as a caregiver and the perceived support from health professionals, family and religion.

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A longitudinal analysis of mental and general health status of informal carers in Australia

Background: The study investigated the self-assessed mental and general health status of informal carers in Australia. It evaluated the influence of carer's health behaviours, namely physical activity, smoking and drinking status, along with their social connectedness and workforce engagement on their health status.; Methods: The study used a retrospective longitudinal design using data from the Household Income and Labour Dynamics of Australia survey, waves 5-15 (2005-2015). It included individuals aged 15 years and older from Australian households surveyed over a period of 11 years. The sample consisted of 23,251 individuals. The outcome measures included: mental health, general health and physical functioning domains of the Short Form 36 Questionnaire, a widely used multi-dimensional measure of health-related quality of life. Using fixed effects regression and following individuals over time, the analysis took care of the issue of individuals self-selecting themselves as carers due to some predisposing factors such as age, poor health, socioeconomic status and sedentary behaviour.; Results: There were statistically significant carer-noncarer status differences in mental (Beta = - 0.587, p = 0.003) and general health (Beta = - 0.670, p = 0.001) outcomes. Aging had a modifying impact on carers' mental and general health outcomes. Older carers coped better with their caregiving responsibilities than younger ones. Moreover, while physical activities had a positive influence on both mental and general health for non-carers, with more activities generating better health outcomes, it only had a modifying impact on carers' mental health. Furthermore, the study found that moderate levels of social drinking had beneficial modifying impact on carers' mental and general health.; Conclusion: This study added value to the literature on informal carers' mental and general health in Australia by identifying some of the protective and risk factors. The study found the modifying effects of carers' age, health behaviours such as physical activity, smoking and drinking status on their health. Finally, the study identified an apparent beneficial link between moderate levels of social drinking and carer health that needs to be further explored with more targeted future research.

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An examination of Latino-advanced cancer patients' and their informal caregivers' preferences for communication about advance care planning: A qualitative study

Objectives: Latino-advanced cancer patients engage in advance care planning (ACP) at lower rates than non-Latino patients. The goal of the present study was to understand patients' and caregivers' preferred methods of communicating about ACP.; Methods: Patients and caregivers were interviewed about cultural, religious, and familial beliefs that influence engagement in ACP and preferences for ACP communication.; Results: Findings highlighted that Latino patients respect doctors' medical advice, prefer the involvement of family members in ACP discussions with doctors, hold optimistic religious beliefs (e.g., belief in miracles) that hinder ACP discussions, and prefer culturally competent approaches, such as using their native language, for learning how to discuss end-of-life (EoL) care preferences.; Significance Of Results: Key cultural, religious, and familial beliefs and dynamics influence Latino engagement in ACP. Patients prefer a family-centered, physician informed approach to discussing ACP with consideration and incorporation of their religious medical beliefs about EoL care. Promising targets for improving the communication of and engagement in ACP include integrating cultural and religious beliefs in ACP discussions, providing information about ACP from the physician, involving family members in ACP discussions and decision-making, and giving instructions on how to engage in ACP discussions.

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Dyadic quality of life among heterosexual and sexual minority breast cancer survivors and their caregivers

Purpose: The number of informal caregivers to cancer survivors is increasing, and limited information is available about caregivers to sexual minority breast cancer survivors. The purpose of this study was to assess dyadic quality of life among sexual minority cancer survivors and their caregivers compared with heterosexual cancer survivors and their caregivers.; Methods: We recruited 167 survivors of non-metastatic breast cancer of different sexual orientations and their caregivers, who were surveyed via telephone after obtaining consent. We used inverse propensity score weighting to account for differences by sexual orientation in age and length of the survivor-caregiver relationship, and simultaneous equation models consistent with the needs for analyzing dyadic data.; Results: About 6-7 years after diagnosis, survivors and caregivers reported quality of life scores consistent with population norms, and there were no differences by survivors' sexual orientation. With few exceptions, caregivers' and survivors' quality of life influenced one another directly, and these effects were stronger among sexual minority dyads than heterosexual dyads.; Conclusions: Because of the strength of sexual minority, survivors' and their caregivers' mutual influence on each other's quality of life, interventions, and clinical care for sexual minority breast cancer survivors should consider their caregivers.

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Dyadic approach to post-stroke hospitalizations: role of caregiver and patient characteristics

Aim: To study the association of caregiver factors and stroke patient factors with rehospitalizations over the first 3 months and subsequent 3-12 months post-stroke in Singapore.; Methods: Patients with stroke and their caregivers were recruited in the Singapore Stroke Study, a prospective yearlong cohort. While caregiver and patient variables were taken from this study, hospitalization data were extracted from the national claims database. We used Poisson modelling to perform bivariate and multivariable analysis with counts of hospitalization as the outcome.; Results: Two hundred and fifty-six patient with stroke and caregiver dyads (N = 512) were analysed, with patients having spouse (60%), child (29%), sibling (4%) and other (7%) as their caregivers. Among all participants, 89% of index strokes were ischemic, 57% were mild in severity and more than half (59%) of the patients had moderate or severe disability post-stroke as measured on the Modified Rankin Scale. Having social support in the form of a foreign domestic worker for general help of caregiver reduced the hospitalization rate over 3 months post-stroke by 66% (IRR: 0.342; 95% CI: 0.180, 0.651). Compared to having a spousal caregiver, those with a child caregiver had an almost three times greater rate of hospitalizations over 3-12 months post-stroke (IRR: 2.896; 95% CI: 1.399, 5.992). Higher reported caregiving burden at the 3-month point was associated with the higher subsequent rate of hospitalization.; Conclusion: Recommendations include the adoption of a dyadic or holistic approach to post-stroke care provision by healthcare practitioners, giving due importance to both patients with stroke and their caregivers, integrating caregivers in the healthcare system to extend the care continuum to include informal care in the community and provision of timely support for caregivers.

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Determining the caregivers' burden in caregivers of patients with mental illness

Objective: To examine the factors associated with caregivers' burden in individuals providing care to family members suffering from serious mental illness. Methods: This Cross Sectional Study was carried out at Armed Forces Institute of Mental Health, Rawalpindi, from May 2015 to December 2015. A purposive sample of 120 family caregivers (60 males and 60 females, age range= 18-65) who were taking care of patients with serious mental illness (i.e. Major Depressive Disorder, Bipolar Disorder & Schizophrenia) for at least one year were recruited from the hospital and assessed through Zarit Burden Interview (ZBI) and Brief COPE inventory. The decline in functional status, and diminished physical capacity compromising the independent living of the care recipient was assessed through Katz Index of Independence in Activities of daily living (ADL) and Lawton Instrumental activities of daily living (IADL). Results: The results suggest that the longer the duration of illness (F=25.71, p < 0.01), with increased impairments of care-recipients, (decline in functional status, F=21.33, p < 0.001; diminished physical capacity F =32.41, p < 0.001) the more the burden experienced by the caregivers. Moreover, caregivers who were married (t=-2.98, p < 0.01), less educated (t =5.48, p < 0.01), lived in rural area (t = -7.99, p < 0.01), had lower monthly income (t = -4.95, p < 0.01) provide longer hours of caregiving (F=19.12, p < 0.001) and used avoidant coping behavior (F= 56.37, p < 0.001) reported significantly higher caregiver burden than caregivers who were unmarried, more educated, lived in urban area and had better income. Conclusion: The results of study demonstrate that caring for family members with serious mental illness impacts the caregivers' wellbeing. It, therefore, highlights the need for support and counseling services for the caregivers to reduce the burden of caring. 

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Death attitudes and truth disclosure: A survey of family caregivers of elders with terminal cancer in China

Background: Although family caregivers play an important role in end-of-life care decisions, few studies have examined the communication between family caregivers and patients at the end of life. Objective: The objective was to describe family caregivers' attitudes toward death, hospice, and truth disclosure. Research design: A quantitative method was used, and a closed-ended survey of 140 family caregivers was conducted in China. The subjects included 140 primary family caregivers of elders with terminal cancer enrolled at a hospice center from April to August 2017. Participants: 140 primary family caregivers of elders with terminal cancer participated the study. Research Context: A high proportion of cancer patients continue to receive inadequate information about their illness. Family caregivers' inhibitions about disclosing information to cancer patients have not yet been the objects of research in China. Ethical considerations: This study was reported to and approved by the Regional Ethics Committee in Shenzhen, China. Findings: A questionnaire survey collected information on family caregivers' background information, emotional state, personal needs, death attitudes, and truth-disclosure opinions. The results revealed that family caregivers' death attitudes and truth-disclosure opinions played an important role in the process of caring for elders with terminal cancer. Discussion: By adopting a quantitative method, the author revealed not only the general patterns of family caregivers' attitudes toward cancer diagnosis disclosure but also the reasons for their actions and the practices of family disclosure. Conclusion: The findings suggested that ineffective communication concerning end-of-life issues resulted from family caregivers' lack of discussion and difficulty in hearing the news. Future studies should examine strategies for optimal communication between family caregivers and patients, especially with regard to breaking the bad news. Professional training in breaking bad news is important and is associated with self-reported truth-disclosure practices among family caregivers. 

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Caregivers in home palliative care: gender, psychological aspects, and patient's functional status as main predictors for their quality of life

Purpose: This study aims to investigate the impact of possible predictors of quality of life (QoL) in a group of Italian caregivers assisting a cancer patient in home palliative care.; Methods: Data from 570 adult informal caregivers and their cancer-affected relatives were collected. A multivariate regression analysis was conducted to assess the effect of three groups of variables on Caregivers Quality of Life Index-Cancer (CQOLC) scale: (a) socio-demographic characteristics of caregivers; (b) psychological characteristics of caregivers assessed by Profile Mood of States (POMS), Caregiver Burden Inventory (CBI), and Preparedness for Caregiving Scale (PCS); (c) Socio-demographic characteristics and functional status of the patients assessed by Karnofsky Performance Status (KPS), Activities of Daily Living (ADL), and Instrumental Activities of Daily Living (IADL).; Results: Regression analysis shows that some variables from each of these clusters are significantly associated with CQOLC, in particular: (a) the gender of the caregiver (st.β = .115, t = 2.765, p = .006) and the time spent for caregiving (st.β = - .165, t = - 3.960, p < .001); (b) the scores obtained by the caregivers in POMS,CBI (st.β = - .523, t = - 16.984, p < .001 and st.β = - .373, t = - 12.950, p < .001, respectively) and PCS (st.β = .092, t = 3.672, p < .001); (c) the gender (st.β = - .081, t = - 1.933, p = .045) and the IADL score (st.β = .195, t = 4.643, p < .001) of the patient.; Conclusions: A multidimensional evaluation is a key strategy to identify the most vulnerable caregivers. Apart from the condition of the patient, the gender of the caregivers, the time spent for caregiving and, above all, their psychological condition are strong predictors of caregivers' QoL.

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Caregivers' causal attributions of their relatives' mental illness and the association with stigma

Causal attributions of mental illness have received substantial attention given their influence on help-seeking patterns of individuals and the level of engagement with health services. Few studies, however, have examined caregivers' perspectives of their relatives' illness. The current study aimed to examine caregivers' causal attributions of their relatives' mental illness and its association with perceived stigma in a multi-ethnic Asian sample. Primary caregivers (N = 350) of psychiatric outpatients were recruited from a psychiatric hospital. The attribution and stigma sections of the Family Interview Schedule (FIS) were utilized to obtain caregivers' causal report of their relatives' illness and stigma perception. Logistic regressions were performed to examine the socio-demographic and diagnostic correlates of the four categories of causal attributions (psychosocial, biological, drug-/substance use-related, supernatural). The majority of caregivers identified psychosocial causes, followed by biological, supernatural, and lastly drug-/substance use-related causes for their relatives' illness. Marital status, religion, employment status and the diagnosis of depressive disorders were significant correlates of biological attributions. Ethnicity and not knowing their relatives' diagnosis were significantly associated with psychosocial attributions. For drug-/substance use-related attributions, ethnicity was the only significant correlate. Supernatural attributions did not yield any significant associations. Caregivers who endorsed drug-/substance use-related reasons also reported significantly higher stigma than caregivers who did not endorse these attributions. A tendency to endorse biological and psychosocial causes for their relative's illness was noted among caregivers. Further research on caregivers' causal attributions is warranted to account for and replicate current study findings.

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Caregivers' beliefs about dementia: findings from the IDEAL study

Objective: Informal caregivers of people with dementia develop their own beliefs about the condition, referred to as Dementia Representations (DRs), as they try to make sense of the changes they are observing. The first aim of this study was to provide a profile of the types of DRs held by caregivers. The second aim was to examine the impact of caregivers' DRs on their well-being, satisfaction with life (SwL) and caregiving stress. Methods: Participants were 1264 informal caregivers of people in the mild-to-moderate stages of dementia from time-point 1 of the IDEAL cohort study. Measures: DRs were measured using questionnaire items covering: Identity, Cause, Control, and Timeline. Results: Almost half (49.2%) of caregivers used a diagnostic term to describe the person's condition, although 93.4% of caregivers stated they were aware of the diagnosis. Higher well-being, SwL, and lower caregiving stress were associated with the use of an identity term relating to specific symptoms of dementia, attributing the cause to ageing or not knowing the cause, and believing the condition would stay the same. Lower well-being, SwL, and higher caregiving stress were associated with believing there was little that could be done to control the effects of the condition. Conclusion: Healthcare professionals should assess and gain an understanding of caregivers' DRs in order to provide more tailored information and support. 

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Antonovsky's sense of coherence and resistance resources reduce perception of burden in family carers of people with Alzheimer's disease

Objectives: Taking care of people with dementia (PWD) has been associated with some degree of burden. The variability of the carer's burden can be partially explained by their personal characteristics. Antonovsky's model of health defined the resistance resources (RRs) as essential mechanisms to cope with stressors, and to shape the personal sense of coherence (SOC). This study identifies the RRs related with carer's SOC, and their implications in the perception of burden in family dementia carers. Methods: A sample of 308 participants from the 'SOC & DEM study' (154 carers and 154 PWD) was recruited from two memory clinics. Carer's personal characteristics of burden, SOC, self-efficacy, coping strategies, perceived social support, and depression were evaluated using standardized instruments. PWD's degree of dependence and behaviour and psychological symptoms of dementia (BPSD) were assessed too. A path analysis was used to test the relationship between caregiver burden and SOC including the personal RRs of the carers and clinical data of PWD. Results: The path model identified SOC as a major factor related to carer's burden perception (r = -.327). Self-efficacy (r = .285), two coping strategies, 'use instrumental support' (r = -.235) and 'behavioural disengagement' (r = -.219), and social support perceived (r = .304) were the main carer's personal characteristics directly related with SOC. Caring experience (r = -.281) was the main carer factor related with burden while dependence (r = .156) and BPSD (r = .157) were the dementia factors. Conclusion: The SOC has previously related with carer's burden. The results contributed to identify relevant and modifiable personal characteristics as RRs that could reduce this burden.

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Understanding on the association between informal caregiver characteristics and cognitive function of adults with cancer: a scoping review protocol

Introduction Adults with cancer frequently report symptoms such as decline in cognitive function throughout the trajectory of illness. Patients with cognitive deficits need support and assistance from their informal caregivers and often rely on them to manage their symptoms based on their degree of deficits. Patients spend a significant amount of time with their informal caregivers and become interdependent with each other. In spite of their interdependence, it is unclear whether patients' cognitive outcomes (ie, cognitive function) are associated with their informal caregivers. Therefore, the body of literature related to the association between caregiver characteristics and cognitive function of adults with cancer needs to be fully mapped with assessment for knowledge gaps. Methods and analysis Methods for this scoping review was informed by the framework proposed by Arksey and O'Malley. Seven electronic databases will be searched: (1) PubMed (MEDLINE), (2) CINAHL, (3) Embase, (4) PsycINFO, (5) Scopus, (6) Sociological Abstracts and (7) ProQuest dissertation abstracts. In addition, the search for grey literature will include the conference abstracts available through Embase, Scopus and Sociological abstracts as well as dissertations available in ProQuest dissertations. All retrieved citations will be independently screened by two authors and eligibility will be determined based on inclusion and exclusion criteria at title and abstract level. Studies meeting inclusion criteria, will be screened at full text level by two reviewers followed by abstraction of included studies. Eligible studies will be collated, summarised and reported using the data charting form that research team developed. Ethics and dissemination This scoping review does not require ethics approval. Results of this scoping review will be disseminated via conference presentation and/or publication in a scientific journal.

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Mental health of carers in Wales: a national population survey

Background Informal care is increasingly common in ageing populations. However, the impact of caring responsibilities on carers’ mental health remains unclear. We used data from the HealthWise Wales (HWW) cohort to examine the impact of caregiving on the mental health of carers. Methods HWW collects demographic, lifestyle, and opinion data, which are linked to routine health-care records, from individuals aged 16 years or older who live in Wales, UK (n=21 779). Mental health was assessed by use of the short Mental Health Inventory (MHI-5) and self-reported diagnosis of mental health conditions. Data on diagnosis of common mental disorders (CMD), including depression and anxiety, were obtained from linked health-care records. Level of caring responsibilities and its impact on the individual's work were self-reported. We estimated associations between caring responsibilities and CMD using logistic regression adjusting for gender, age, and deprivation. HWW received ethics approval from Wales Research Ethics Committee (REC) 3 on March 16, 2015 (reference 15/WA/0076). All participants gave informed consent digitally as a pre-requisite for registration online. Findings The cohort included 3682 carers; 2791 (76%) were female, 2833 (77%) were aged 45 years or older, and 1900 (53%) lived in more deprived areas. The cohort of non-carers included 10 023 people; 7107 (71%) were female, 6030 (60%) were aged 45 years or older, and 4814 (49%) lived in more deprived areas. Of those identifying as carers, 1271 (35%) of 3607 with linked health records self-reported a CMD and 1331 (44%) of 3057 with linked health records had a diagnosis of a CMD versus 3029 (31%) and 2992 (36%) of non-carers, respectively. There was 80% agreement between self-report and recorded diagnosis of a CMD in health-care records. Compared with non-carers, carers were 1·3 times more likely to have an MHI5 score indicating current CMD (odds ratio [OR] 1·28, 95% CI 1·17–1·40; p<0·0001). Participants who had previously given up work to provide care were also more likely to have an MHI5 score indicative of a CMD (1·67, 1·47–1·88; p<0·0001). Being a carer was further linked to the likelihood of self-reported diagnosis of a CMD (1·21, 1·11–1·32; p<0·0001) and of diagnosis of a CMD from health-care records (1·32, 1·21–1·44; p<0·0001), even after adjusting for sociodemographic factors. Interpretation This study suggests that caring is linked to poor mental health, emphasising the potential burden of caring responsibilities on the carers’ mental health across the population. While acknowledging the cross-sectional nature of these data, these findings highlight the need to develop and test interventions that can support informal carers to protect their mental health. Funding Health and Care Research Wales.

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Hassles with medication management perceived by caregivers of adults who have intellectual or developmental disabilities

Background Medication management is undertaken by caregivers of people who have intellectual or developmental disabilities. Objective The objectives were to measure the medication management hassles reported by caregivers of adults who have intellectual or developmental disabilities and to describe associations between characteristics of caregivers, medication regimens, and the person with intellectual or developmental disability and the scale score. Setting Web-based survey conducted in the United States. Method A newsletter announcement with a link to the survey was sent to members of a disability advocacy organization. Caregivers were age 18 years and older who manage medications for adults with intellectual or developmental disabilities. The survey questions were used to obtain characteristics of the caregiver, the medication regimen they managed, and the care-recipient. The study was approved by the Institutional Review Board of Michigan Medicine (HUM00091002). Main outcome measure The Family Caregiver Medication Administration Hassles Scale (caregiver scale). Results Forty-two caregivers responded, with 41 being female with a mean age of 56.7 years. The mean caregiver scale score was 28.9 (possible range 0-120). Highest scores (greatest hassles) were significantly associated with a greater level of support required by the care-recipient, stronger caregiver beliefs of the necessity of medication and concern about using medications, lack of previous caregiver health-care training, and being an employed caregiver rather than family member. Conclusion Medication management can contribute to caregiver stress. Pharmacists should ensure that caregivers are counseled about medication that they manage, be accessible for questions, and examine medication regimens to reduce polypharmacy and complexity of regimens.

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Understanding informal caregivers' motivation from the perspective of self-determination theory: an integrative review

Background A long-term illness is stressful both for the person with the diagnosis and for his or her informal caregivers. Many people willingly assume the caregiving role, so it is important to understand why they stay in this role and how their motivation affects their health. Self-determination theory (SDT) is a theory of human motivation that has been successfully applied in human research domains. To our knowledge, there is no literature review on the application of SDT in a caregiver context. A systematic review of the literature could improve the understanding of motivation in caregiver work and contribute to the utility of SDT. Aim To describe and explore empirical studies of caregivers' motivation from the perspective of self-determination theory. Methods An integrative literature review according to Whittemore and Knafl was conducted with systematic repetitive searches in the MEDLINE, Scopus, PsychInfo, PsycNET, Chinal, Cochrane Library and EMBASE databases. The searches were performed from May through December 2018. The PRISMA diagram was used for study selection, and papers were assessed for quality based on the Mixed Methods Appraisal Tool. Data analysis consisted of a four-stage narrative analysis method. Result Of 159 articles, 10 were eligible for inclusion. All studies considered satisfaction of the three basic psychological needs for competence, autonomy and relatedness as essential in predicting the quality of caregivers' motivation and thereby their well-being. In this review, autonomous motivation was the most important determinant of caregivers' well-being. Conclusions Findings showed that SDT can be applied to identify, categorise, explain, predict, promote and support motivation among caregivers. This lends interesting support for SDT and promotes further study and application of the theory as a psychological approach to caregivers' health and health promotion.

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Family Caregiver Factors Associated With Emergency Department Utilization Among Community-Living Older Adults With Disabilities

Background: Older adults with disability are frequent users of the emergency department (ED) and often rely on family caregiver support. We identify whether and which caregiver characteristics are associated with older adults' ED use. Methods: We use Cox proportional hazards regression to model the likelihood of all-cause ED use (defined as 1 or more visits within 12 months of survey) as a function of caregiver characteristics after adjusting for older adult sociodemographic and health characteristics. We draw from linked older adult and caregiver surveys and administrative claims, creating a sample of 2521 community-living older adults with mobility/self-care disability receiving care from a family or unpaid caregiver. Results: About half (52.5%) of older adults receiving mobility or self-care help incurred 1 or more ED visits within 12 months of interview. Adjusting for year of data collection, sociodemographic characteristics, and health status, these older adults were at greater risk of all-cause ED use if their primary caregiver provided greater than 40 hours of care per week (hazard ratio [HR] 1.22, 95% CI 1.04-1.43; P = .02), helped with health care tasks (HR 1.26; 95% CI 1.08-1.46; P < .01), or experienced physical strain (HR 1.18; 95% CI 1.03-1.36; P = .02). Conclusion: Caregiver strain, helping with health care tasks, and greater hours of help per week are associated with heightened risk of ED use among older adults receiving mobility or self-care help. Study findings suggest the potential benefit of caregiver assessment and support.

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Care in dementia: Informal caregiver motivations

Introduction: The progression of dementia and the clinical situation severity can determine the intensity and the frequency of care. Informal caregivers (IC) often experience overload and motional stress by caring for a person with dementia (PWD), and this contributes to negative consequences on psychosocial health and increased risk of mortality. Objectives: The aim of this study is to describe the profile and motivations of informal caregivers of people with dementia. Methods: We developed a descriptive-exploratory study with a mixed approach. The research scenario was the Health Centre Groups (ACES) of the Northern Zone of Portugal and its respective Family Health Units (USF) and Community Care Unit (UCC). Results: From the sample studied, it was observed that ICs are predominantly female (72.2%), with ages varying between 34 and 88 years (x = 61.43; ± 11.75). The relationship with PWD is mainly a parent son relationship (46.7%) followed by the spouse (40%) with lower expression for the siblings (2.2%). The main motivations that led family members to become caregivers were categorized into four themes: i) Emotional reasons (love, affection, marriage, commitment); ii) Duty and responsibility; iii) Proximity and availability; and iv) Feeling of pain (charity). Regarding the main motivations for caregivers, we found a greater expressiveness for both the spouses (69.5%) and the sons or daughters (58.5%) for emotional reasons. Conclusions: Therefore, even if caregivers feel motivated to take care of their family member, care strategies should be developed to help the informal caregivers to minimize stress, overload, depression and anxiety arising from this task, maximizing coping strategies and empowerment. As health care responsibilities and burdens continue to be transferred to the family and other caregivers, there is an urgent need for family-friendly policies, practices and interventions.

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Risk factors for suicidal thoughts in informal caregivers: results from the population-based Netherlands mental health survey and incidence Study-2 (NEMESIS-2)

Background: Previous research suggests that family caregivers contemplate suicide at a higher rate than the general population. Much of this research has been disease specific and in relatively small samples. This study aimed to compare suicidal thoughts between non-caregivers and informal caregivers of people with a variety of conditions, in a large representative sample, and to identify significant risk factors. Methods: The general population study NEMESIS-2 (N at baseline = 6646) included 1582 adult caregivers at the second wave (2010–2012) who also participated at the third wave (2013–2015). Suicidal thoughts were assessed over 4 years, with the Suicidality Module of the Composite International Diagnostic Interview 3.0. The presence of suicidal thoughts was estimated and risk factors for suicidal thoughts were assessed with logistic regression analyses adjusted for age and gender. Results: Thirty-six informal caregivers (2.9%) reported suicidal thoughts during the 4 year study period. The difference between caregivers and non-caregivers (3.0%) was not significant. Among caregivers, significant risk factors for suicidal thoughts included being unemployed, living without a partner, having lower levels of social support, having a chronic physical disorder, a mood disorder or an anxiety disorder, and having impaired social, physical and emotional functioning. These risk factors were also found in non-caregivers. No caregiving-related characteristics were associated with suicidal thoughts. Conclusion: There was no elevated rate of suicidal thoughts in caregivers and risk factors for suicidal thoughts in caregivers were consistent with risk factors in non-caregivers. No association between caregiving characteristics and suicidal thoughts was found. Caregivers with limited resources and in poorer health might still benefit from prevention and intervention efforts

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Eysenck personality questionnaire revised-abbreviated for informal caregivers

The objective of this study was to analyze the psychometric properties of the Spanish version of the Eysenck Personality Questionnaire Revised-Abbreviated (EPQR-A) in informal caregivers. Trained, independent evaluators administered the EPQR-A and evaluated informal caregivers' depressive symptoms, automatic negative thoughts, self-efficacy, and pleasant social contacts, and clinical experts assessed major depressive episode in 592 caregivers (87.2% women, mean age 55.4 years). Women scored significantly higher on Neuroticism than men (p < .001). Subscale internal consistencies were .77 for Neuroticism, .75 for Extraversion, .47 for Sincerity; and .24 for Psychoticism. These four factors accounted for 38.1% of total variance. However, a three-factor model (excluding Psychoticism) better fit the data. Neuroticism was significantly, inversely correlated with both self-efficacy (r = -.35) and pleasant social contacts (r = -.22), and positively correlated with both depressive symptoms (r = .59) and negative thoughts (r = .53). Extraversion was significantly, inversely correlated with both depressive symptoms (r = -.22) and negative thoughts (r = -.22), and positively correlated with both self-efficacy (r = .36) and pleasant social contacts (r = .16). A cutoff score of 4 on Neuroticism suitably discriminated between depressed and non-depressed informal caregivers (sensitivity = 68.1%, specificity = 79.9%). 

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Association of State and Trait Anxiety Between Patients Who Had Undergone Traumatic Amputation and Their Family Caregivers

The purpose of this research was to explore the association between state and trait anxiety experienced by patients who had undergone traumatic amputation and their family caregivers. The sample studied consisted of 50 hospitalized patients who had undergone traumatic amputation and 50 family caregivers. The collected data included patients’ and caregivers’ characteristics and the State Trait Anxiety Inventory scores. Fifty percent of patients and caregivers scored below 50 and 47, respectively (median), in trait anxiety. In terms of state anxiety, at least 50% of patients and caregivers scored below 56 and 50.5, respectively. These values indicate moderate to high levels of the impact of amputation on the trait and state anxiety of amputees and their caregivers. A positive linear correlation was found between the trait and state anxiety of the patients as well as between the trait and state anxiety of caregivers, as expected (ρ = 0.915, P <.001, and ρ = 0.920, P <.001, respectively). A statistically significant positive correlation was also observed between state patient anxiety and state anxiety of caregivers (ρ = 0.239 and P =.039) and between trait patient anxiety and trait anxiety of caregivers (ρ = 0.322 and P =.030). More specifically, as the patient’s anxiety score (either trait temporary) increases, the score of the caregivers’ anxiety increases and vice versa. Nurses should be aware of the association between anxiety of amputees and caregivers and, therefore, work in multidisciplinary teams to maximize clinical outcomes for patients after amputation and their families.

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Caring for Aging Populations: Examining Compassion Fatigue and Satisfaction

Stamm’s Professional Quality of Life Scale (ProQOL) was utilized to examine compassion fatigue and compassion satisfaction among three types of caregivers: formal (employed in a caregiver role), adult child (caring for an aging parent), and spouse/partner (caring for significant other). Data were collected from a sample of 87 adults who were currently (for 6 months or longer) providing care to an individual 65 years of age or older. The results revealed that formal caregivers had significantly higher compassion satisfaction scores compared to both adult child and spouse/partner caregivers. Additionally, results indicated that formal caregivers had significantly lower compassion fatigue scores than adult child caregivers. Although limited by the homogeneities in the sample of convenience, this study suggests that family caregivers could benefit from additional support in providing care. Furthermore, research should be conducted to examine factors that contribute to formal caregivers’ increased satisfaction and decreased fatigue in an effort to inform family caregivers. 

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Empathic accuracy in chronic pain: Exploring patient and informal caregiver differences and their personality correlates

Background and objectives: Social factors have demonstrated to affect pain intensity and quality of life of pain patients, such as social support or the attitudes and responses of the main informal caregiver. Similarly, pain has negative consequences on the patient’s social environment. However, it is still rare to include social factors in pain research and treatment. This study compares patient and caregivers’ accuracy, as well as explores personality and health correlates of empathic accuracy in patients and caregivers. Materials and Methods: The study comprised 292 chronic pain patients from the Pain Clinic of the Vall d’Hebron Hospital in Spain (main age = 59.4 years; 66.8% females) and their main informal caregivers (main age = 53.5 years; 51.0% females; 68.5% couples). Results: Patients were relatively inaccurate at estimating the interference of pain on their counterparts (t = 2.16; p = 0.032), while informal caregivers estimated well the patient’s status (all differences p > 0.05). Empathic accuracy on patient and caregiver status did not differ across types of relationship (i.e., couple or other; all differences p > 0.05). Sex differences in estimation only occurred for disagreement in pain severity, with female caregivers showing higher overestimation (t = 2.18; p = 0.030). Patients’ health status and caregivers’ personality were significant correlates of empathic accuracy. Overall, estimation was poorer when patients presented higher physical functioning. Similarly, caregiver had more difficulties in estimating the patient’s pain interference as patient general and mental health increased (r = 0.16, p = 0.008, and r = 0.15, p = 0.009, respectively). Caregiver openness was linked to a more accurate estimation of a patient’s status (r = 0.20, p < 0.001), while caregiver agreeableness was related to a patient’s greater accuracy of their caregivers’ pain interference (r = 0.15, p = 0.009). Conclusions: Patients poorly estimate the impact of their illness compared to caregivers, regardless of their relationship. Some personality characteristics in the caregiver and health outcomes in the patient are associated with empathic inaccuracy, which should guide clinicians when selecting who requires more active training on empathy in pain settings. 

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Predictors of Symptoms Remission Among Family Caregivers of Individuals With Dementia Receiving REACH VA

Resources for Enhancing All Caregivers Health (REACH VA) is a behavioral intervention for caregivers of individuals with dementia disseminated in the VA. Although shown to improve caregiver and care recipient outcomes, some caregivers continue to experience depression or caregiver burden following the intervention. Factors that predict symptom remission following REACH VA are unknown. The present study investigated attachment, social support, and psychopathology as predictors of symptom remission for family caregivers who completed REACH VA. Caregivers who do not remit perceive lower levels of social support from loved ones, endorse poorer attachment quality, and have more personality disorder characteristics, particularly affective instability. These factors that impair caregivers’ abilities to be effectively attuned to the needs of their care recipients and to reap benefits from a brief and focused behavioral intervention such as REACH VA. Interventions that target caregiver interpersonal functioning and emotion regulation skills may be helpful to those who do not respond to REACH VA. 

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Time to move? Factors associated with burden of care among informal caregivers of cognitively impaired older people facing housing decisions: Secondary analysis of a cluster randomized trial

Background: Making health-related decisions about loved ones with cognitive impairment may contribute to caregiver burden of care. We sought to explore factors associated with burden of care among informal caregivers who had made housing decisions on behalf of a cognitively impaired older person. Methods: We conducted a secondary analysis within a cluster randomized trial (cRT) conducted in 16 publicly-funded home care service points across the Province of Quebec. The cRT assessed the impact of training home care teams in interprofessional shared decision making (IP-SDM). We assessed burden of care with the Zarit Burden Interview (ZBI) scale. We adapted Pallett's framework to inform our data analysis. This framework posits that factors influencing burden of care among caregivers fall within four domains: (a) characteristics of the caregiver, (b) characteristics of the cognitively impaired older person, (c) characteristics of the relationship between the caregiver and the cognitively impaired older person, and (d) the caregiver's perception of their social support resources. We computed the ZBI score and performed multilevel linear regression modelling. Results: Among 296 caregivers included in the dataset, the mean ZBI score was 29.8 (SD = 17.5) out of 88. The typical participant was 62.6 years old (SD = 11.7), female (74.7%), and caring for a mother or father (61.2%). Using multivariate analysis, factors significantly associated with caregiver burden mapped onto: caregiver characteristics (caregivers with higher burden were female, experienced higher decision regret and decisional conflict, preferred that their loved one move into the caregiver's home, into a private nursing home or a mixed private-public nursing home, and had made the decision more recently); relationship characteristics (spouses and children experienced higher burden); and caregiver's perception of social support resources (caregivers who perceived that a joint decision making process had occurred had higher burden). Conclusion: In line with the proposed framework used, we found that caregiver characteristics, relationship characteristics and caregiver's perception of social support resources were associated with burden of care. Our results will help design interventions to prevent and/or reduce caregivers' burden of care. Trial registration: NCT02244359. Date of registration: September 18, 2014. 

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Caregiving Status and Health of Heterosexual, Sexual Minority, and Transgender Adults: Results From Select U.S. Regions in the Behavioral Risk Factor Surveillance System 2015 and 2016

Background and Objectives Insufficient research attention has been paid to the diversity of informal caregivers, including sexual and gender minority caregivers. This study examined health effects of caregiving separately from sexual orientation or gender identity status, while stratifying by gender among cisgender adults. We hypothesized that compared with heterosexual cisgender noncaregivers, heterosexual caregivers and lesbian/gay/bisexual (LGB), and transgender (T) noncaregivers would report poorer health outcomes (i.e., self-reported health, and poor mental health days and poor physical health days), and LGBT caregivers would report the worst health outcomes. Research Design and Methods This is a secondary data analysis of the 2015 and 2016 Behavioral Risk Factor Surveillance System data from 19 U.S. states. Results After adjusting for covariates and stratifying by gender among the cisgender sample, heterosexual caregivers, LGB noncaregivers and LGB caregivers had significantly higher odds of self-reported fair or poor health (adjusted odds ratios [aORs] 1.3–2.0 for women and 1.2 for men), poor physical health days (aORs 1.2–2.8 for women and 1.3–2.8 for men), and poor mental health days (aORs 1.4–4.7 for women and 1.5–5.6 for men) compared with heterosexual noncaregivers (reference group). By contrast, transgender caregivers did not have significantly poorer health than cisgender noncaregivers. Discussion and Implications LGB caregivers reported the worst health compared with other groups on multiple measures, signifying they are an at-risk population. These results suggest the necessity to develop LGB appropriate services and programs to prevent poor health in LGB caregivers. Existing policies should also be inclusive of LGBT individuals who are caregivers.

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A survey of the prevalence of modifiable health risk behaviours among carers of people with a mental illness

Background: Family carers provide significant support to people with a mental illness; yet may experience poor mental and physical health themselves. Among limited research addressing the physical health of carers, studies of carers of people with dementia and young people with psychosis suggest increased risk of chronic diseases in conjunction with higher levels of potentially modifiable lifestyle risk behaviours. This exploratory study, conducted with carers of people with various mental illnesses, aimed to determine: carer prevalence of health risk behaviours (inadequate fruit and vegetable consumption, inadequate physical activity, harmful alcohol consumption, and tobacco smoking); interest in changing 'at risk' behaviours; and potential associations of socio-demographic characteristics with risk status and interest in change. Methods: A cross-sectional survey was conducted among family carers of people with a mental illness (N = 144) residing in New South Wales, Australia. Analyses explored risk behaviour prevalence and interest in change, and associations with socio-demographic variables. Results: Inadequate fruit and vegetable consumption was most prevalent (74.8%), followed by engaging in inadequate amounts of physical activity (57.6%); harmful alcohol consumption (36.3%) and smoking (11.8%). The majority of carers were interested in improving 'at risk' behaviours (56.3-89.2%), with the exception of alcohol consumption (41.5%). Previously or never married participants were more likely to consume inadequate amounts of fruits and/or vegetables compared to those married or cohabiting (Odds Ratio [OR]: 4.1, 95% Confidence Interval [CI]: 1.3-12.9, p =.02). Carers in the workforce were more likely to be engaging in inadequate physical activity (OR: 2.6, 95% CI: 1.2-5.7, p =.02); and male participants were more likely to engage in harmful alcohol consumption (OR: 2.9, 95% CI: 1.1-7.9, p =.03). Working carers were approximately five times more likely to report interest in improving their alcohol consumption (OR: 5.1, 95% CI: 1.3-20.5, p =.02) compared to those not currently in the workforce. Conclusions: Results suggest high engagement in health risk behaviours among carers of people with a mental illness, particularly with regards to harmful alcohol consumption. Findings suggest a need to develop and implement chronic disease prevention strategies. Further research with larger representative samples is needed to confirm findings. 

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Availability of informal caregivers for palliative care patients with cancer: Is there a difference between higher- and lower-income settings

Objective: Family caregivers are the default caring personnel for terminal cancer patients. The characteristics, demographics, distribution, psychological burden, and socioeconomic standards differ between high- and low-income countries. We aimed to assess those factors and their direct reflection on both the patient and the caregiver. Patients and Methods: This is a comparative cross-sectional study for terminal cancer patients in the palliative care unit between the United Kingdom (UK) as a high-income community and Egypt as a low-income community. We assessed the different characteristics, demographics, living place, the degree of relevance, and the availability of caregivers. Results: We have recruited 216 patients from the UK and 117 patients from Egypt. Informal caregivers were available in 74.5% and 92.3% for these patients with a mean age of 71.5 (standard deviation [SD] 16) years and 50.9 (SD 15.18) years, respectively. There has been a statistically significant difference between the two countries' caregivers in being married, family, and living in the same household (P < 0.0001). Conclusion: Low-income countries are more common to have an informal caregiver who is a family member of different degree of relevance. Caregivers in low-income settings tend to be younger, of the female gender, married, and living in the same household than in high-income ones.

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Informal caregivers' judgements on sharing care with home care professionals from an intersectional perspective: the influence of personal and situational characteristics

The European policy emphasis on providing informal care at home causes caregivers and home care professionals having more contact with each other, which makes it important for them to find satisfying ways to share care. Findings from the literature show that sharing care between caregivers and professionals can be improved. This study therefore examines to what degree and why caregivers' judgements on sharing care with home care professionals vary. To improve our understanding of social inequities in caregiving experiences, the study adopts an intersectional perspective. We investigate how personal and situational characteristics attached to care judgements are interwoven. Using data of the Netherlands Institute for Social Research, we conducted bivariate and multivariate linear regression analysis (N = 292). We combined four survey questions into a 1-4 scale on 'caregiver judgement' (α = 0.69) and used caregivers' personal (such as gender and health status) and situational characteristics (such as the care recipient's impairment and type of care) as determinants to discern whether these are related to the caregivers' judgement. Using a multiplicative approach, we also examined the relationship between mutually constituting factors of the caregivers' judgement. Adjusted for all characteristics, caregivers who provide care to a parent or child with a mental impairment and those aged between 45 and 64 years or with a paid job providing care to someone with a mental impairment are likely to judge sharing care more negatively. Also, men providing care with help from other caregivers and caregivers providing care because they like to do so who provide domestic help seem more likely to be less satisfied about sharing care. This knowledge is vital for professionals providing home care, because it clarifies differences in caregivers' experiences and hence induce knowledge how to pay special attention to those who may experience less satisfaction while sharing care.

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Care Stress Experienced by Caregivers of Elderly Individuals With Disabilities and the Coping Strategies Utilized: A Survey Study in the City of Nanjing, China

The objectives of this study were to (1) analyze the circumstances of caregivers of elderly individuals with disabilities; (2) present their levels of care stress; (3) examine family, market, and government factors that help reduce this care stress; and (4) identify the most effective method of alleviating stress for these individuals. Face-to-face interviews were conducted using standardized questionnaires. Caregivers experienced a moderate level of stress, which increased with time. Spouse caregivers experienced highest care stress, with psychological stress being greatest. All caregiver groups received different levels of care assistance from family, market, and government. Most received support from family, few paid for professional care market services, and most were unsatisfied with government care services. Stress was associated differently with care time, care assistance, and sociodemographic characteristics. Spouse caregivers, psychological counseling, and quality of public care services require further attention, with an integrated care system required to help alleviate care stress among caregivers.

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Caregiving for Older Adults with Limited English Proficiency: Transitioning from Hospital to Home

Background: Although the family caregiver workforce is increasingly diverse, little is known about culturally and linguistically diverse caregivers and patients for whom they care. Caregiver roles include communicating with health care teams on behalf of patients with language barriers.; Objective: Our objective is to describe characteristics and experiences of caregivers for patients with limited English proficiency (LEP) immediately following hospital discharge.; Design: Cross-sectional.; Participants: Primary informal caregivers for Chinese- and Spanish-speaking patients with LEP discharged from a large academic medical center's orthopedic surgery, general surgery, and cardiovascular inpatient floors from June 2012 to August 2013.; Main Measures: Bilingual-bicultural research assistants conducted baseline structured interviews with patients or surrogates in the hospital, and 3 weeks after discharge, gathering demographic and health information. They then interviewed by phone informal caregivers, identified by patients, to determine caregiving experiences.; Key Results: One hundred fifty-eight caregivers were interviewed post-discharge. Two-thirds (69.0%) were adults caring for parents or grandparents, and 20.9% were spouses or partners. Sixty-nine (43.7%) caregivers had LEP themselves, yet only 12% of patients reported having access to professional interpreters at the time discharge instructions were provided. Ninety percent reported performing three or more caregiving roles for the patient (helping at home, helping with medical decisions, helping with medical forms, helping communicate with medical staff, and talking with doctors about medical care). Forty percent reported moderate/high levels of perceived stress (some, most, or all of the time) caring for the patient. Multivariate regression revealed caregivers for Chinese-speaking patients, and those for patients discharged to another hospital were most likely to report moderate/high levels of perceived stress.; Conclusion: Culturally and linguistically diverse caregivers perform multiple roles caring for patients with LEP, often have LEP themselves, and experience notable levels of stress. These results also demonstrate an opportunity to expand the use of professional interpreters at hospital discharge to avoid communication errors.

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Critical comments mediate the association between carer distress and psychological symptoms in persons recently diagnosed with dementia

Introduction: Carers of persons with dementia (PWD) experience high levels of burden and distress and may use criticism in an attempt to change the behavior of PWD and thereby reduce their distress. We hypothesized that carer distress and criticism would each have an impact on the psychological well-being of the PWD and examined whether criticism mediates the association between carer distress and PWD psychological well-being.; Methods: We recruited 61 persons with a recent diagnosis of dementia and their carer via U.K. dementia services and assessed at 2 time points 6 months apart. Carers completed questionnaire measures of burden and distress. We coded critical comments from a Camberwell Family Interview. PWD completed questionnaire measures of quality of life, depression, and anxiety. We conducted correlation, regression, and mediation analyses to explore the relationship between carer variables and PWD psychological outcomes and whether criticism mediated any relationship found.; Results: Carer distress, carer critical comments, and PWD anxiety and depression at 6-month follow-up were all significantly correlated. Baseline carer distress predicted poorer quality of life in PWD at 6-month follow-up. The number of carer critical comments significantly (p < .01) mediated the effect of carer distress on PWD quality of life.; Discussion: Interventions addressing carer burden and distress and offering coping strategies to help them to reduce criticism of the PWD would improve the quality of life of those affected by dementia. 

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Associations Between Informal Caregivers’ Burden and Educational Level

We investigated the association between the education of informal caregivers’ (IC) and their physical and mental burden. We hypothesized that better-educated IC would have more resources available to manage the care situation and as a result show lower perceived burden. We conducted a population survey of 6,087 German residents aged 18+ years, 966 of whom reported to be IC. Results show that IC felt more often mentally than physically burdened. In the multivariate analyses, higher-educated IC did not have lower odds of feeling physically burdened than lower-educated IC, though they did have increased odds of feeling mentally burdened. The higher perceived mental burden of higher-educated IC may be related to fear of loss of self-fulfilment and autonomy. Support services should consider the mental burden of higher-educated IC and tailor their interventions accordingly.

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What Are the Characteristics of Caregivers Logging in for Support Services?

Background and Objectives: Online service delivery options have the potential to increase access to informational resources among caregivers to older adults. However, it is unknown which caregivers will use online-delivered services over usual service delivery modes (e.g., by phone) when both options are available in social service settings. This is important for service providers to know when making decisions that best serve their communities. Research Design and Methods: Guided by Andersen’s model of health service utilization, we used step-wise logistic regression models to compare the characteristics of caregivers who used an online information service called FCA CareJourney (FCA CJ) with those who accessed the same services using the usual mode of service delivery (N = 540). Online and usual-care services were available through two social service organizations in California. Results: In all, 13.7% of clients used FCA CJ to receive services online. Enabling characteristics were the main predictors of using online-delivered services. Caregivers employed part-time had 3.82 times the odds of using online-delivered services compared to those employed full-time (odds ratio [OR] = 3.82; 95% confidence interval [CI]: 1.58–9.22). Caregivers who learned about services from health care providers had 2.91 times the odds of using FCA CJ as those who learned about services through social services (OR = 2.91; 95% CI: 1.28–6.62). Even among those who learned about services online, 62.2% still accessed services using usual delivery modes. Discussion and Implications: Based on differences in the characteristics of caregivers using different service delivery modes and the low uptake of online-delivered services, we suggest online service delivery should supplement, not replace, usual delivery modes in social service settings. At the same time, user rates of online service delivery are likely modifiable. Given the potential for online-delivered programming to expand access to information services for caregivers, we recommend further examination into the effects of marketing online service delivery options to caregivers in novel ways

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Family Caregiving Situations and Engagement in Advance Care Planning

Background: Family members are involved in the decision-making process of advance care planning (ACP). However, there is limited evidence about how family caregiving situations affect engagement in ACP. Objective: To understand how agreement on caregiving situations and caregiving burdens are predictive of engagement in ACP of older adults. Design: Cross-sectional secondary data. Setting/Subjects: Subjects were nationally representative of adults ages 65 or older from the National Health and Aging Trends Study. Measurements: Informal engagement in ACP was measured based on whether respondents had discussed an end-of-life care option. The study involving formal engagement in ACP asked whether respondents have completed durable powers of attorney or living wills. Family members' agreement on caregiving situations and caregiving burdens were used to measure caregiving situations. We also include sociodemographic and health-related variables. Results: Higher levels of disagreement between family members concerning care for older adults were associated with engagement in formal ACP (odds ratio [OR] = 0.5); there were higher levels of caregiver burdens with engagement in formal ACP (OR = 1.1). The factors of being age 85 or older (OR = 2.2) and having fallen down in the previous year (OR = 1.9) were also related to formal engagement in ACP. Being white and having high school diplomas were associated with both informal and formal engagement in ACP. Conclusions: Caregiving situations may affect care recipients' decision-making regarding informal and formal engagement in ACP in different ways, suggesting different intervention strategies for different types of ACP.

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The Characteristics of Informal Cancer Caregivers in the United States

Objective: To review characteristics and experiences of informal cancer caregivers.; Data Sources: Recent empirical studies and review papers on informal cancer caregiving.; Conclusion: Increasing cancer prevalence and shifts toward outpatient care place substantial burden on caregivers. Cancer progression, treatment, and individual characteristics influence the caregiving experience. Longitudinal research and the development, testing, and implementation of effective interventions for cancer caregivers are needed.; Implications For Nursing Practice: Nurses play key roles in efforts to support cancer caregivers. Nursing interventions that incorporate caregiver preparation, support, and training in caregiving tasks are warranted.

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Sociodemographic Characteristics and Preferences for Family (Informal) and Formal Caregiver Help With ADLs

The purpose of this article was to compare sociodemographic characteristics and various care preferences for family and formal caregivers help with activities of daily living (ADLs). The sample was 56,337 noninstutionalized U.S. civilian adults, 40 to 65 years of age. This is a cross-sectional study using secondary data from the National Health Interview Survey (NHIS)—2011 to 2014. Respondents’ sociodemographic characteristics and various care preferences for caregiver help with ADLs were analyzed. Subsequent analysis examined associations using adjusted multivariable logistic regression models. Preference for family caregivers help with ADLs was independently and significantly associated with race/ethnicity, age, gender, education, acculturation, and income. Future studies need to examine sociodemographic characteristics and caregiver preferences to tailor health care services for aging adults in the United States.

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Social support and high resilient coping in carers of people with dementia

High resilience is associated with improved carer outcomes. Both individual factors and the availability of social support have been linked with resilience. This study was conducted to compare socio-demographic characteristics and the availability of social support for carers with low and high resilient coping, and identify if any domain of social support predicted high resilient coping in informal carers of people with dementia. The participants in this cross sectional survey included 108 informal carers of people with dementia. Findings showed the availability of emotional/informational support was most likely to predict resilient coping and tangible support the least likely. However, when controlling for all covariates, only gender predicted high resilient coping, individual social support domains were no longer significant. Therefore, as no single domain of social support has a significantly greater influence on resilient coping, service providers should enable carers to build a wide, multi-function support network.

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Dispositional mindfulness, self‐compassion, and compassion from others as moderators between stress and depression in caregivers of patients with lung cancer

Objective: The present study aimed to identify the most important protective factors predicting caregivers' depressive symptoms among factors of caregivers' dispositional mindfulness, self‐compassion, compassion from others, and patients' dispositional mindfulness and their moderator effects on the relationship between caregiving stress and depressive symptoms. Methods: A total of 72 lung cancer outpatients and their family caregivers participated in this study. Family caregivers completed the Kingston Caregiver Stress Scale, Beck Depression Inventory‐II (BDI‐II), Five Facet Mindfulness Questionnaire (FFMQ), Self‐Compassion Scale, and Compassion from Others Scale. Patients completed the EORTC Quality of Life Questionnaire Core 30 (EORTC QLQ‐C30), BDI‐II, and FFMQ. Results: After controlling for patients' factors (treatment status, symptom distress, and depressive symptoms) and caregivers' health status, caregivers' stress and dispositional mindfulness, the domain of mindful awareness, and self‐compassionate action were significantly associated with their depressive symptoms. Further analysis indicated that mindful awareness or self‐compassionate action could buffer the effect of caregiving stress on depressive symptoms. When the two moderators, mindful awareness and self‐compassionate action, were tested simultaneously, only self‐compassionate action remained as a significant moderating effect. Conclusions: Caregivers' mindful awareness and self‐compassionate action were protective factors, which mitigate the impact of caregiving stress on their depressive symptoms. Therefore, the future supportive program aims at training the competencies of self‐compassionate action with mindful awareness, which may enhance caregivers' coping resources

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State of Caring 2019: A snapshot of unpaid care in the UK

Carers UK carried out an online survey between March and May 2019. A total of 8,069 carers and former carers responded to the survey – we have only included responses from the 7,525 people who are currently providing care in this report. Compared to the carer population as a whole, respondents to this survey were more likely to be female and caring for a high number of hours every week. Of respondents to the survey:

  • 73% live in England, 10% live in Scotland, 9% live in Northern Ireland, and 8% live in Wales.
  • 81% identify as female and 18% identify as male.
  • 24% consider themselves to have a disability.
  • 1% are aged 0–24, 4% are aged 25–34, 13% are aged 35–44, 30% are aged 45–54, 32% are aged 55– 64, 14% are aged 65–74, and 5% are aged 75 and over. 
  • 3% identified as lesbian, gay or bisexual.
  • 5% described their ethnicity as black or minority ethnic.
  • 20% also have childcare responsibilities for a non-disabled child under 18. 
  • 39% are in paid work. Of those, 47% work full-time and 53% part-time. 
  • 31% have been caring for 15 years or more, 15% for between 10–14 years, 24% for 5–9 years, 26% for 1–4 years, and just 4% have been caring for less than one year. 
  • 46% care for 90 or more hours every week, while 17% care for 50–89 hours, 23% care for 20–49 hours, and 13% care for 1–19 hours a week. 
  • Most (74%) care for one person, 20% care for two people, 5% for three people, and 2% care for four or more people. 

As not all respondents completed every questions in the survey, a number of the figures given in this report, including those presented in this Appendix, are based upon responses from fewer than 7,525 carers. This, together with the sample sizes of different groups, should be taken into consideration when reading the results.

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Factors Associated with Receipt of Training Among Caregivers of Older Adults

This study uses data from the 2015 National Health and Aging Trends Survey to investigate whether family and unpaid caregiver characteristics are associated with the receipt of caregiver training.

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Needs and rights awareness of stroke survivors and caregivers in urban and rural China: a cross-sectional, multiple-centre questionnaire survey

Objectives: Stroke survivors require assistance and support in their daily lives. This survey aims to investigate the needs and rights awareness in Chinese stroke survivors and caregivers in rural and urban settings.; Setting: This survey was adapted from the one created by the World Stroke Organization. The questionnaire included demands for psychological support, treatment and care, social support and information. From January 2015 to January 2016, the survey was pilot tested with urban and rural-dwelling stroke survivors and caregivers from 12 hospitals. Stroke survivors were invited to participate if they were over 18 years old and had experienced a stroke. Exclusion criteria were patients who had disorders of consciousness, significant cognitive impairment, aphasia, communication difficulties or psychiatric disorders. Only caregivers who were family members of the patients were chosen. Paid caregivers were excluded.; Participants: One thousand, one hundred and sixty-seven stroke survivors and 1119 caregivers were enrolled.; Primary Outcome Measures: The needs of stroke survivors and caregivers in rural and urban areas were compared. The correlations between needs of rural and urban stroke survivors and caregivers and potential effect factors were analysed, respectively.; Results: Among the cohort, 93.5% reported the need for psychological support, 88.6% for treatment and care, 84.8% for information and 62.7% for social support. The total needs and each aspect of needs of stroke survivors in urban settings were greater than of those in rural settings (p<0.01). In rural areas, total needs and each aspect of needs were positively correlated with education level (p<0.01).; Conclusions: Needs and rights awareness of stroke survivors should also be recognised in both urban and rural China. According to the different needs of patients and their caregivers, regional and individualised services were needed by stroke survivors and their caregivers.

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Ageism in informal care network members of older women

Objectives: Negative attitudes toward aging are common among formal healthcare providers, but have been infrequently assessed among informal caregivers providing assistance to older adults. The current study sought to identify factors associated with ageism toward older women.; Design: Multivariate hierarchical linear regression modelSetting:Lower-income neighborhoods in an urban setting in the Midwestern USAParticipants:144 care network members of White and African American women aged ≥ 65 years Measurements: Age Group Evaluation and Description (AGED) Inventory assessed attitudes toward older women; CES-D scale measured depressive symptoms; Intergenerational Affectional Solidarity Scale assessed relationship closeness.; Results: In bivariate analyses, African American caregivers endorsed more positive attitudes toward older women. In the multivariate regression model, attitudes toward older women were associated with care recipient health (β = 0.18, p < 0.05) and relationship closeness with the care recipient (β = 0.23, p < 0.05). However, these associations were fully mediated by care recipient-specific attitude ratings by the care network member. The association between person-specific attitudes and general attitudes was uniquely directional.; Conclusions: Findings from the present study are consistent with past research suggesting that 'ageism' may, at least in part, derive from bias against perceived poor health. Further, our findings of an association between attitude toward the care recipient and attitudes toward older women in general provide support for cognitive psychology theory which emphasizes the role of personal experience in stereotype formation through the availability heuristic. The current study underlines the necessity for development of interventions to address ageism in informal caregivers.

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Caregiver Reward and Burden: Differing Constructs in Family Members Providing Care for Medically Ill Homebound Older Adults

Objective: This study examined the relationship between caregiver burden and reward and how each relates to factors, such as depression, within the caregiving dyad.; Method: A total of 101 older adults and their primary family caregivers were recruited upon enrolling in home health care services. Patients were assessed for sociodemographic information, depression, disability, pain, and caregiver support at baseline and at 8 weeks. Caregivers were assessed at baseline for sociodemographic information, depression, caregiver burden, caregiver reward, and caregiving tasks they provide.; Results: Burden and reward were significantly inversely correlated, but differentially associated with distinct patient and caregiver variables. Patients whose caregivers reported higher baseline levels of caregiver reward were more likely to have lower depression scores at follow-up.; Discussion: Given that different aspects of patients and caregivers influence reward and burden, assessing caregivers for both burden and reward may better target caregiver interventions at the individual and family levels, particularly for older adult depression.

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Who internalizes courtesy stigma and how? A study among Israeli Arab family caregivers of persons with dementia

Objectives: The expected rise in the number of persons with dementia is accompanied by an increasing interest in understanding and reducing the stigmatic beliefs experienced by family caregivers of persons with the disease. While researchers have recently distinguished between family caregivers' perceptions of public stereotypes (i.e., courtesy stigma) and the internalization of these perceptions (i.e., affiliate stigma), no study has yet assessed the characteristics of dementia caregivers who internalize courtesy stigma and how they do so. The aim of this study was to examine the characteristics of family caregivers of persons with dementia who internalize courtesy stigma, and to investigate this internalization process.; Method: Structured face-to-face interviews were conducted with 175 Israeli Arab family caregivers (87.4% female; 71.4% adult children; mean age = 54.28) for persons with Alzheimer's disease.; Results: Overall, half of the participants reported experiencing affiliate stigma as a result of taking care of a relative with dementia. Regression analyses showed that lower educational level, increased courtesy stigma and lower levels of social support were the main predictors of affiliate stigma. Social support partially mediated the association between courtesy and affiliate stigma.; Conclusion: Our findings provide important insights for the conceptual understanding and the development of interventions to reduce stigma among family caregivers of persons with dementia.;

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The influence of attachment style and relationship quality on quality of life and psychological distress in carers of people with epileptic and nonepileptic seizures

Seizure disorders affect not only the individual living with seizures, but also those caring for them. Carer–patient relationships may be influenced by, and have an influence on, some aspects of living with seizure disorders — with potentially different interactions seen in epilepsy and psychogenic nonepileptic seizures (PNES). We studied the influence of patient and carer attachment style and relationship quality on carer wellbeing and psychological distress, and explored whether these associations differ between carers for people with epilepsy and for those with PNES. Consecutive adult patients with epilepsy (N = 66) and PNES (N = 16) and their primary informal carers completed questionnaires about relationship quality, attachment style, and psychopathological symptom burden. We used correlation analysis to identify associations between relationship quality, attachment style, and carer depression, anxiety, and wellbeing; and to explore differences in these associations between carers for people with epilepsy and for those with PNES. Overall, 25.3% of carers for people with epilepsy or PNES had scores above the clinical cutoff for depression and 39.6% for anxiety; significantly more carers for people with PNES reported clinically significant depression (47.1% vs. 20.0%), but there was no difference in anxiety rates likely to be of clinical relevance. Correlations differed significantly between carers for people with epilepsy and for those with PNES in terms of patient quality of life and carer anxiety (r E = − 0.577, r PNES = − 0.025); seizure severity and carer depression (r E = 0.248, r PNES = − 0.333) and mental wellbeing (r E = − 0.356, r PNES = 0.264); patient depression and carer anxiety (r E = 0.387, r PNES = − 0.266); and patient anxious attachment and carer anxiety (r E = 0.382, r PNES = 0.155). Clinically evident levels of psychological distress are prevalent among carers for people with epilepsy and PNES. Clinical and relationship variables affect carer quality of life differently depending on whether care is provided for individuals with epilepsy or PNES. • Carers for people with seizure disorders experience high levels of depression and anxiety. • Mental wellbeing in this group correlates with relationship conflict, and patient and carer attachment styles. • These associations differ between carers for people with epilepsy and for those with psychogenic non-epileptic seizures. 

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Recovery from burden: informal caregiver profiles that predict treatment success

Background: Neuropsychiatric symptoms (NPI) of dementia are important determinants of caregiver burden, while caregiver coping styles and competences can relieve burden. Caregivers differ in coping with the demands made on them and in experienced burden. What changes in caregivers explain recovery from burden, and which caregiver characteristics predict recovery from burden over time, and does treatment make a difference?Methods: This study into recovery from burden was a secondary analysis of data collected in a formerly conducted randomized controlled trial (RCT) on the integrated reactivation and rehabilitation (IRR) programme in a psychiatric-skilled nursing home, compared to usual care (UC; i.e. day care, assisted living arrangements, and nursing home wards). For this secondary analysis, longitudinal data on persons with dementia and caregivers were used from baseline (T1), end of treatment (T2), and at nine months (T3). Results: Caregivers with an improved sense of competence (SCS) who care for persons with dementia with a decreased severity of NPI have the highest chance of recovering from burden (CSI). Caregivers with a tendency to feel involved with others and sympathize with others (affiliation, ICL-R) have a slightly lower probability of improvement with respect to their sense of competence in the short term. The number of improved caregivers was higher in IRR than UC. Conclusion: Recovery depends on both an improved sense of competence and a decreased severity of NPI. Combined interventions that address both NPI and focus on enhancing caregiver's sense of competence have added value when it comes to decreasing caregiver burden.

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Levels of Satisfaction, Workload Stress and Support Amongst Informal Caregivers of Patients Receiving or Not Receiving Long-Term Home Nursing Care in Poland: A Cross-Sectional Study

The role of informal caregivers was included in the Assumptions of the Long-Term Senior Policy in Poland for 2014-2020. The document acknowledged the necessity of diagnosing the needs of informal caregivers of elderly people and to implement systemic solutions that would enable the provision of assistance for them. In response, this study aimed to describe the situation of caregivers of patients receiving versus patients not receiving Long-Term Home Nursing Care (LTHNC; i.e., a formal program including regular visits by a nurse specializing in home care) in terms of caregiver socio-demographic characteristics, health self-assessment, work overload, satisfaction derived from being a caregiver, and the quality of perceived support. A cross-sectional study was conducted using the Carers of Older People in Europe (COPE) Index in 2015 in the north-eastern part of Poland involving 170 caregivers of patients supported with LTHNC and 86 caregivers of patients staying at home and not receiving LTHNC. We found that caregivers for patients receiving LTHNC were significantly less overloaded with care work than caregivers for patients without LTHNC support (p < 0.001). LTHNC support was also related to the level of satisfaction with providing care: Caregivers for patients receiving LTHNC were significantly more satisfied with performing their role and felt greater support than caregivers for patients without LTHNC (p < 0.001). Our study provides evidence for a positive relationship between LTHNC and the situation of informal caregivers of dependent elderly people at home. A formal program of visits by a nurse specializing in long-term home care may facilitate the provision by caregivers of better informal care to patients staying at home.

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Study of family burden in substance dependence: A tertiary care hospital-based study

Background: A substance-dependent person affects almost all aspects of family life, for example, interpersonal and social relationships, leisure time activities, and finances. Substance dependence invariably increases conflicts, negatively affects family members, and burdens the families. Aims and Objectives: To assess family burden perceived by primary caretakers (PCTs) of individuals with substance dependence and relevant clinico socio demographic profile of individuals as well as PCTs. Materials and Methods: Individuals and primary caretakers (n = 150) attending psychiatry OPD and emergency were included in the study. Individuals were selected by convenient sampling. The individuals and PCTs were administered psychiatric thesis/interview pro forma and drug abuse schedule. PCTs were administered "family burden interview schedule." Results: Majority of caretakers had moderate objective burden (65.3%) and severe subjective burden (74%). Objective burden was more in areas of "financial burden" and "disruption of routine activities." Objective burden had correlation (P < 0.05) with monthly family income, monthly expenses on substance, number and type of substances, treatment history, sex and type of caretaker. Subjective burden was dependent on sex and type of caretaker and treatment history of the patient. Conclusion: Our study concluded that substance dependence is associated with substantial burden for family members, more for subjective and objective burden in families with low income and with patients who are dependent on more number of substances and had taken treatment in the past. Higher proportion of severe burden was reported by female caretakers. These findings suggest directions for future research in this area.

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Foreign Domestic Workers and Eldercare in Singapore: Who Hires Them?

In Singapore, policy makers expect families to remain actively involved in the care of their frail older relatives, as manifestly expressed in its Many Helping Hands approach to long-term care. To enable families to fulfill this expectation, the government has enacted policies that encourage the hiring of foreign domestic workers (FDWs) to complement or supplement informal caregiving efforts. Using the Andersen Behavioral Model, we were interested in identifying caregiver and care receiver characteristics that might predict the hiring of FDWs. With data from a convenience sample of 488 informal caregivers, we ran logistic regression regressing the hiring of an FDW on various predisposing, enabling, and need factors. Of interest, enabling factors such as household income, housing type, and educational level were predictive of hiring an FDW in the home. Only one need factor, time spent in caregiving, was predictive of the increased likelihood to hire an FDW. Policies that encourage the marketization of care are likely to favor those with financial means and inadvertently ignore the caregiving burdens of lower income families. In addition, we suggest research and policies to ensure the well-being and protection of FDWs who have become a key component of the long-term care policy and practice in Singapore.

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Multifactorial Examination of Caregiver Burden in a National Sample of Family and Unpaid Caregivers

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. 

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Acceptability of psychosocial interventions for dementia caregivers: a systematic review

Background: Most of patients with dementia are cared for by family members. Caring for people with dementia is challenging; approximately 30-55% of caregivers suffered from anxiety or depressive symptoms. A range of studies have shown that psychosocial interventions are effective and can improve caregivers' quality of life, reduce their care burden, and ease their anxiety or depressive symptoms. However, information on the acceptability of these interventions, despite being crucial, is under-reported.; Methods: Systematic searches of databases were conducted for literature published on EMBASE, PubMed, The Cochrane Library, Web of Science, and PsycARTICLES until August 2017 and the searches were updated on June 2018. The selection criteria included primary studies with data about the acceptability of psychosocial interventions for informal caregivers and publications written in English. Two authors independently selected studies, extracted study characteristics and data, assessed the methodological quality of the included studies by using the Effective Public Health Practice Project (EPHPP) Quality Assessment Tool and Critical Appraisal Skills Programme (CASP) Qualitative Research Checklist, and conducted a narrative synthesis of quantitative and qualitative data.; Results: A total of 10,610 abstracts were identified through systematic searches. Based on screening titles and abstracts, 207 papers were identified that met the criteria for full paper review, with 42 papers from 13 different countries meeting the inclusion criteria. We found high- and moderate-quality evidence showing psychosocial interventions were acceptable, with important benefits for caregivers. Facilitators of acceptability included caregivers' need for intervention, appropriate content and organization of the intervention, and knowledge and professionalism of the staff. Barriers to acceptability included participants' poor health status and low education levels, caregiving burden, change of intervention implementers, and poor system performance of interventions.; Conclusion: There is preliminary evidence to support the acceptability of psychosocial interventions for dementia caregivers. However, the available supporting evidence is limited, and there is currently no adequate information from these studies indicating that the acceptability has received enough attention from researchers. More well-designed studies assessing psychosocial interventions are needed to give specific statements about acceptability, and the measure of acceptability with psychosocial interventions should be more comprehensive.

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Self-efficacy and social support for psychological well-being of family caregivers of care recipients with dementia with Lewy bodies, Parkinson's disease dementia, or Alzheimer's disease

The study identified factors associated with depressive symptoms in family caregivers of persons with dementia with Lewy bodies, Alzheimer's disease, or Parkinson's disease dementia. An Internet-based survey generated 606 response sets. Regression analysis indicated that care recipients' memory and behavioral problems, caregivers' self-efficacy, grief, and tangible, emotional, and affectionate support were significantly associated with caregivers' depressive symptoms. Self-efficacy mediated caregiver burden to improve psychological well-being. Social support mediated the association between caregiver grief and psychological well-being. Social workers can provide psychoeducational interventions to help caregivers to manage emotional distress and improve capacity to manage tasks related to the dementia.

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Predictors and moderators of burden of care and emotional distress in first-episode psychosis caregivers: results from the GET UP pragmatic cluster randomised controlled trial

Aims First-episode psychosis (FEP) is a major life event and can have an adverse impact on the diagnosed individual and their families. The importance of intervening early and providing optimal treatments is widely acknowledged. In comparison to patient groups, literature is scarce on identifying treatment predictors and moderators of caregiver outcomes. This study aimed to identify pre-treatment characteristics predicting and/or moderating carer outcomes, based on data from a multi-element psychosocial intervention to FEP patients and carers (GET-UP PIANO trial).; Methods: Carer demography, type of family relationship, patient contact hours, pre-treatment carer burden, patient perceptions of parental caregiving and expressed emotion (EE) were selected, a priori, as potential predictors/moderators of carer burden and emotional distress at 9 months post treatment. Outcomes were analysed separately in mixed-effects random regression models.; Results: Analyses were performed on 260 carers. Only patient perceptions of early maternal criticism predicted reports of lower carer burden at follow-up. However, multiple imputation analysis failed to confirm this result. For treatment moderators: higher levels of carer burden at baseline yielded greater reductions in carer emotional distress at follow-up in the experimental group compared with treatment as usual (TAU). Higher levels of perceived EE moderated greater reductions in carer reports of tension in experimental group, compared with TAU, at follow-up. In younger caregivers (<51 years old), there were greater reductions in levels of worry during the baseline to follow-up period, within the experimental group compared with TAU.; Conclusion: The study failed to identify significant treatment predictors of FEP carer outcomes. However, our preliminary findings suggest that optimal treatment outcomes for carers at first episode might be moderated by younger carer age, and carers reporting higher baseline levels of burden, and where patients perceive higher levels of negative effect from caregivers.

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Self-Compassion, Health Outcomes, and Family Carers of Older Adults: An Integrative Review

Objectives: This review sought to synthesize published evidence about the role of self-compassion on health outcomes for family carers of older adults, to describe the current state of knowledge.; Method: Using an integrative review method that permitted any research design, eight databases were searched. Extensive searching of gray literature sources was also undertaken. Studies included in the review underwent processes of methodological quality assessment (Mixed Methods Appraisal Tool - Version 2011), data extraction, analysis, and syntheses.; Results: Four studies were included: two randomized controlled trials, a descriptive cross-sectional survey, and a qualitative study. There was preliminary evidence to show the potential of self-compassion to help family carers cope and reduce levels of burden. However, efficacy of self-compassion interventions to improve family carer health outcomes could not be determined.; Conclusions: Self-compassion in family carers of older adults is a new and emerging research area, and there is very little published evidence about how self-compassion might be developed to improve health outcomes for family carers.; Clinical Implications: To inform clinical understanding within this population, future quality research is needed, particularly regarding proof-of-concept, moderating effects of carer and care recipient factors, reliability of self-compassion measures, and the development and testing of self-compassion based interventions.

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Invisible partners in care: Snapshot of well-being among caregivers receiving comprehensive support from Veterans Affairs

Background and aims: Since May 2011, over 23 000 caregivers of Veterans seriously injured on or after September 11, 2001 have enrolled in the Program of Comprehensive Assistance for Family Caregivers (PCAFC). PCAFC provides caregivers training, a stipend, and access to health care. The aim of this study is to describe the characteristics of caregivers in PCAFC and examine associations between caregiver characteristics and caregiver well-being outcomes.; Methods: We sent a web survey invitation to 10 000 PCAFC caregivers enrolled as of September 2015. Using linear and logistic regressions, we examine associations between PCAFC caregiver characteristics and caregiver outcomes: perceived financial strain, depressive symptoms (Center for Epidemiologic Studies Depression Scale [CESD-10]), perceived quality of Veteran's Veterans Health Administration (VHA) care, and self-reported caregiver health.; Results: We had complete survey data for 899 respondents. Since becoming a caregiver, approximately 50% of respondents reported reducing or stopping work. Mean time spent providing care was 3.8 years (median 3, IQR 1-5) with an average of 4.9 weekdays (median 5, IQR 5-5) and 1.9 weekend days (median 2, IQR 2-2). The mean CESD-10 score was 8.2 (median 7, 4-12), at the cutoff for screening positive for depressive symptoms. A longer duration of caregiving was associated with having 0.08 increase in rating of financial strain (95% CI, 0.02-0.14). Caregiver rating of the Veteran's health status as "fair" or better was a strong predictor of better caregiver outcomes, ie, self-reported caregiver health. However, higher levels of education were associated with worse caregiver outcomes, ie, lower global satisfaction with VHA care, higher CESD-10 score, and higher rating of financial strain.; Conclusions: Higher depressive symptoms among longer duration caregivers, coupled with high rates of reductions in hours worked, suggest interventions are needed to address the long-term emotional and financial needs of these caregivers of post-9/11 Veterans and identify subpopulations at risk for worse outcomes.

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Carers of people from LGBTQ communities interactions with mental health service providers: Conflict and safety

This exploratory study examines the experiences of informal/family carers of people from LGBTQ communities living with mental illness, or experiencing a mental health crisis, in relation to conflict and safety in their interactions with mental health service providers. Carers were surveyed to gain an understanding of their experiences of services. The data were analysed according to the six main originating domains in the Safewards model where conflict may arise as well as the nature of the activity in the domain with the addition of new categories of 'carer characteristics' and 'carer modifiers'. The study findings identified the main domains where conflict occurred, as well as modifications to activities undertaken by staff, consumers, and carers that reduced tensions and misunderstandings. Carer responses revealed the interplay between the Safewards domains and activities and the location of much of what was considered conflict with staff reflecting the regulatory environment services were provided in. This study highlights distinctive carer characteristics and the important conflict modifying role of carers. The findings suggest that the expansion of the Safewards model to include carers may be beneficial.

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Beyond care burden: associations between positive psychological appraisals and well-being among informal caregivers in Europe

Purpose: The burden of caring for a family member or friend can have a negative impact on caregiver health and well-being, yet caring can also have positive consequences. Understanding the factors that may enhance caregiver well-being is merited.; Methods: We used data gathered from the European Quality of Life Survey (EQLS). Using complete case analysis followed by multiple imputation analysis, a series of multilevel regression models were developed to systematically explore the role of three distinct blocks of factors in predicting caregiver well-being as measured by the WHO-5 well-being index: (1) sociodemographic and health factors, (2) care and burden-related factors, and (3) psychological and social appraisals. Differences between frequent caregivers and the general population were also compared on all measures.; Results: 36,908 respondents took part in EQLS, with 4171 (11%) identifying as frequent carers. While frequent caregivers reported lower well-being compared to the remaining population, most were happy with the amount of time spent caring. Our model explained approximately 32% of variance in well-being scores. After examining the role of known risk factors, all positive psychological appraisals were associated with higher well-being (p < .001). In order of magnitude these were optimism, perceived autonomy, sense of purpose, resilience, and perceived levels of social inclusion. Self-rated health was the strongest predictor of well-being while female carers and those with high levels of various burden measures reported lower well-being.; Conclusions: Findings suggest that caregiver well-being is influenced by more than simply the burden of care. As well as attempting to reduce burden, interventions aimed at supporting caregivers could focus on fostering more positive appraisals to enhance well-being in this group.

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Measuring familism in dementia family caregivers: the revised familism scale

Objectives: Familism is a cultural value that has been shown to be important for understanding the dementia caregiving process. The aim of this study is to analyze the psychometric properties of the Revised Familism Scale (RFS).; Method: Face-to-face assessments were done with 199 dementia family caregivers. Exploratory factor analysis, discriminant validity, and reliability analyses of the RFS were carried out.; Results: The results suggest that the RFS has good psychometric properties and is composed of three factors: "Familial interconnectedness", "Familial obligations", and "Extended family support".; Conclusion: The RFS seems to be a reliable measure of familism, a multidimensional construct measuring a relevant cultural value for dementia family caregivers.

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Rates and Risk Factors for Post-Traumatic Stress Disorder Symptomatology among Adult Hematopoietic Cell Transplant Recipients and Their Informal Caregivers

Hematopoietic cell transplant (HCT) can cause significant distress in patients and their informal caregivers. Despite advances in reduced-intensity conditioning and supportive care, few recent studies have reported rates of clinically significant post-traumatic stress disorder (PTSD) symptomatology. Goals of the current study were to examine rates of PTSD and distress in patients and caregivers and to identify sociodemographic and clinical risk factors for PTSD. As part of an annual survivorship survey, 2157 HCT recipients and their caregivers were mailed self-report measures of PTSD and distress. Patients also completed self-report measures of sociodemographic information (eg, age, sex, employment status). Clinical variables (eg, time since transplant, transplant type) were captured in the transplant database. A total of 691 recipients (56% age 60 or above at the time of survey, 47% women, median 10.1 years post-HCT) and 333 caregivers provided PTSD data and were included in the current analyses. More caregivers reported PTSD (6.6%) than patients (3.3%; P =.02). Patients or caregivers who had PTSD reported significantly higher distress related to uncertainty, family strain, medical demands, finances, identity, and health burden (P <.0001) compared with those without PTSD. Patient but not caregiver PTSD was associated with more recent transplant (P =.01 and P =.16, respectively). Rates of PTSD are relatively low in long-term survivors of HCT and their caregivers. Nevertheless, results are consistent with other studies of cancer caregiving suggesting that caregivers often experience greater distress than patients. Timely referral to psychosocial services should be offered to both HCT recipients and caregivers reporting symptoms of PTSD. 

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Perceived Grief Among Caregivers of Patients With Dementia in China

Chinese family caregivers of dementia patients suffer considerable grief in their caregiving activity; little research has been conducted on dementia caregivers' grief in China. This study aims to (a) confirm the factor structure of the Mandarin version of the Marwit-Meuser Caregiver Grief Inventory-Short Form (MM-CGI-SF), (b) evaluate the levels of family caregivers' grief, and (c) explore the best predictors of family caregivers' grief. A cross-sectional study was conducted to collect data from 91 caregivers of dementia patients. The Mandarin version of the MM-CGI-SF had a three-factor structure. Family caregivers' grief was at an average level. Family caregivers' monthly household income and caring time per day predicted their own grief. The Mandarin version of the MM-CGI-SF possessed the same factor structure as the original English version, and the Chinese family caregivers experienced an average grief which was predicted by the monthly household income and caring time per day of the caregivers.

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The key factors for the engagement of primary stakeholders in decision-making for the future care of people with dementia living in the community: a systematic integrative review

Background: Engagement of people with dementia who are living in the community, their family or carers, and healthcare professionals in decision-making related to their future care is an area yet to be explored in the literature. In particular, little is known about the factors most likely to underpin their engagement.; Objectives: To identify key factors for the engagement of the person with dementia living in the community, as well as their family or carer and their healthcare professionals in decision-making processes related to future care.; Design: This is an integrative review guided by the PRISMA guidelines; the Mixed Methods Appraisal Tool was used to assess study quality. MEDLINE, PubMed, CINAHL, PsycINFO and Embase databases were searched for articles published from 2012 to 2018 that focused on people with dementia who live in the community, their family or carers, and community-based healthcare professionals.; Results: Twenty articles were included in the review, and six key factors were identified through thematic analysis: knowledge and understanding of dementia and decision-making for the future, valuing decision-making for the future, healthcare professionals' communication skills, timing of initiating conversations, relationship quality, and orientation to the future.; Conclusion: This review identifies the six key factors required for the engagement of the three primary key stakeholders in decision-making about the future care of people with dementia. It also situates the factors within the complex context in which people with dementia, their family or carers, and healthcare professionals typically find themselves.

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Do Caregiver Characteristics Affect Caregiver Burden Differently in Different Countries?

The relationships between caregiver burden as measured with the Burden Scale for Family Caregivers–short form and 6 characteristics of caregivers caring for patients with dementia were investigated for caregivers from England (n = 36), Finland (n = 42), and Greece (n = 46) using survey data. In all 3 countries, caregiver burden increases with physical problems of the caregiver, emotional problems of the caregiver, and weekly hours of care. Hence, in all 3 countries, special support for informal care is required when these characteristics are at high levels. When the caregiver is a spouse or long-term partner of the person with dementia, lives in the same house as this person, or spends fewer than 20 h/wk for other duties than care, this is associated with less caregiver burden in England but with more caregiver burden in Greece. Accordingly, special support is required for Greek caregivers with these characteristics, but the opposite is true for English caregivers.

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Family caregivers for adult cancer patients: knowledge and self-efficacy for pain management in a resource-limited setting

Adult cancer patients (ACPs) in resource-limited settings disproportionately suffer from inadequate pain control despite advancements in pain management. Family caregivers (FCGs) can support optimal pain control for ACPs in these settings if they are knowledgeable and confident about the needed care. However, the status of FCGs' knowledge and self-efficacy (SE) for pain management in developing countries is not well established. Purpose: To assess the FCGs' knowledge and SE levels for pain management among ACPs while at home in a resource-limited setting. Methods: Using a questionnaire that comprised a Family Pain Questionnaire and Chronic Pain Self-efficacy Scale, data were collected from 284 FCGs of ACPs receiving care from two cancer care centres. Results: The FCGs had moderate knowledge (mean = 41.70 ± 14.1) and SE (mean = 795.95 ± 301.3) levels for pain management at home for ACPs. Majority of the FCGs had low knowledge (52.1%), but expressed higher SE (52.5%). Poor self-rated health among FCGs was significantly associated with low knowledge levels (OR = 1.75; 95% CI 1.024-2.978, p = 0.041). SE was significantly associated with perceiving a low impact of caregiving on health (OR = 1.55; 95% CI 1.074-2.239, p = 0.019), hours of caregiving per week (OR = 0.52; 95% CI 0.315-0.854; p = 0.01) and receiving organisational support (OR = 0.388; 95% CI 0.222-0.679; p = 0.001). Conclusion: The results show a need for deliberate interventions to enhance FCG knowledge and SE for pain management at home as one of the ways of improving cancer pain management in resource-limited settings.

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Empathy in informal dementia caregivers and its relationship with depression, anxiety, and burden

Background/Objective: Recent interventions aim to heighten informal caregivers' empathy levels assuming that this will lead to better well-being. However, previous studies have explored linear associations between empathy and aspects of well-being and yielded mixed results. We hypothesized that quadratic models may be more fitting to describe these relationships. Method: A cross-sectional study, with two groups (201 informal caregivers, and 187 non-caregivers) was conducted. Participants completed questionnaires on cognitive and affective empathy, and depression, anxiety, and caregiver burden. AN(C)OVA's and multiple hierarchical regression analyses including linear and quadratic terms were used to analyze the data. Results: For caregivers, there was a negative quadratic relationship between depression and cognitive empathy, and a positive linear relationship between anxiety and affective empathy, irrespective of sociodemographic characteristics. For non-caregivers, there were positive quadratic relationships between depression and cognitive and affective empathy, and between anxiety and affective empathy. The empathy levels did not differ between the groups. Conclusions: While caregivers and non-caregivers had the same amount of empathy, the relationships between empathy and depression and anxiety differed between the groups. Interventions for informal caregivers could aim to heighten cognitive empathy and to lower affective empathy to diminish depression and anxiety symptoms. 

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Dementia Family Caregivers' Willingness to Pay for an In-home Program to Reduce Behavioral Symptoms and Caregiver Stress

Objectives: Our objective was to determine whether family caregivers of people with dementia (PwD) are willing to pay for an in-home intervention that provides strategies to manage behavioral symptoms and caregiver stress and to identify predictors of willingness-to-pay (WTP).; Methods: During baseline interviews of a randomized trial and before treatment assignment, caregivers were asked how much they were willing to pay per session for an eight-session program over 3 months. We stratified the sample into those who refused to provide a WTP, those willing to pay $US0, and those willing to pay > $US0. We used a two-part model, controlling for demographic characteristics, to predict adjusted mean WTP and to examine associations between WTP, clinical features (cognition, function, behavioral symptoms), and time spent assisting PwD with daily activities. First, we used logistic regression to model the probability a caregiver was willing to pay > $US0. Second, we used a generalized linear model (log link and Gamma distribution) to estimate the amount caregivers were willing to pay conditional on WTP > $US0.; Results: Of 250 dyads enrolled, 226 (90%) had complete data and were included in our analyses. Of 226 dyads, 26 (11%) refused to provide a WTP value, 72 (32%) were willing to pay $US0, and 128 (57%) were willing to pay > $US0. In the combined model, mean adjusted WTP was $US36.00 (95% confidence interval [CI] 26.72-45.27) per session. Clinical features were not significantly associated with WTP. One additional hour providing PwD assistance was associated with a $US1.64 (95% CI 0.23-3.04) increase in WTP per session.; Conclusion: As caregivers spend more time assisting with daily activities, they are willing to pay more for a supportive program.; Clinical Trial Registration Number: NCT01892579.

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Quality of Life of Family Caregivers of Patients With Cancer in Korçe, Albania

Purpose: The primary objective of this study was to quantify cancer family caregiver (FCG) quality of life (QOL) in a Southern Albanian population and to determine whether differences exist between 4 domains of QOL (physical, psychological, social, and spiritual). This study also sought to compare QOL in our cohort to QOL in historical studies that used the same survey instrument, and to examine correlations between demographic characteristics and QOL to identify any high-risk groups.; Methods: A sample of 40 FCGs was recruited at the Mary Potter Palliative Care Clinic in Korçe, Albania. Each participant completed the City of Hope Quality of Life (Family Version), a validated 37-question instrument that measures caregiver well-being in 4 domains: physical, psychological, social, and spiritual well-being.; Results: There were no significant differences between the composite scores of the 4 QOL domains in our study. However, there were differences when comparing self-reported QOL between domains ("Rate your overall physical/psychological/social/spiritual well-being"). The QOL measured in our study was significantly lower than in 3 studies from the United States that used the same questionnaire. There were no significant correlations between demographic groups and QOL.; Conclusions: This study examines the impact that the paucity of palliative services has on the QOL of Albanian cancer FCGs. Although there were no domains of QOL or demographic groups identified in our study that were faring significantly worse than others, the poor overall QOL provides further evidence to support the continued development of palliative services for both patients and family members in Albania.

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Psychological Sequelae in Family Caregivers of Critically-Ill Intensive Care Unit Patients: A Systematic Review

Rationale: Family members of critically-ill patients hospitalized in the intensive care unit (ICU) often become caregivers and they are at risk to develop adverse psychological outcomes. There is a need to understand the psychological impact of critical illness on family caregivers.; Objectives: The aim of this systematic review is to document the prevalence of depression, anxiety, and posttraumatic stress disorder (PTSD) in family caregivers of critically-ill patients and identify potential risk factors for psychological outcomes to inform clinical and future research recommendations.; Methods: A literature search for psychological outcomes for family caregivers of critically-ill patients was conducted. A total of 1,148 studies from PsycINFO, CINAHL, Web of Science, SCOPUS and Medline were identified.; Results: Forty studies met inclusion criteria and were included in the review. The prevalence of psychological outcomes in family caregivers ranged from 4% to 94% for depression, 2% to 80% for anxiety, and 3% to 62% for PTSD. Caregiver depression, anxiety, and PTSD decreased in most studies that assessed longitudinal outcomes. Common risk factors identified for adverse psychological outcomes included younger caregiver age, caregiver relationship to the patient, lower socioeconomic status, and female sex.; Conclusions: The prevalence of depression, anxiety, and PTSD varies greatly across studies of family caregivers of critically-ill patients. This finding highlights the need for more systematic investigations of psychological outcomes and the implementation of clinical interventions to prevent or reduce depression, anxiety, and PTSD in family caregivers of critically-ill patients.

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You never walk alone: An exploratory study of the needs and burden of an informal care group

Little is known about the dynamics of a group of people giving informal care together. The aim of this study was to investigate the characteristics of an informal care group, the obstacles the informal care group experiences, the needs and desires they have and how the informal care group can be supported by general practitioners (GPs) and other professionals. Nine informal care groups were interviewed based on a questionnaire that was preapproved by the six Flemish official informal caregiver organisations. The results were analysed using open coding. A survey was conducted among 137 caregivers who were part of a group. Univariate analysis was performed. Informal care group usually consist of close relatives of the patient, with often the partner of the patient as the main caregiver. The size of the informal care group depends on the size of the family. If there are more caregivers in a group, the perceived burden of the individual caregiver decreases. The support of the other caregivers in the group increases capacity. The cooperation and agreements are often spontaneously organised and few problems are reported. There is a large variation in the expectations of support from the general practitioner, ranging from availability in emergencies to information about the possibilities of formal home care. This study depicts a positive image of the informal care group. Being part of a caregiver group both decreases burden and increases capacity. Informal care groups usually function well without a need for formal agreements within the group, and they rarely need a third party to coordinate with them or intervene.

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Emotional and social repercussions of stroke on patient-family caregiver dyads: Analysis of diverging attitudes and profiles of the differing dyads

For patients, the social and emotional repercussions of stroke include shame, personality changes, and upheavals experienced by the couple (i.e. patient and main family caregiver). These impacts on the couple ‘patient/family caregiver’ are scarcely documented. Focusing on the perceptions of the patients and the family caregivers living at home, two years after a stroke occurrence, the aims of the study were to analyse the concordance of attitudes towards the emotional and social repercussions of stroke and to determine the profiles of the differing dyads. Two researchers conducted separate face-to-face structured interviews with stroke survivors and their family caregivers. Eleven items, identified through a content analysis of interviews and after a qualitative process of generating questionnaire items, assessed the commonly experienced impact of stroke on the family, the social repercussions of stroke, and its emotional effects on the stroke survivors. The kappa concordance coefficient was used to determine the response convergence between patients and family caregivers. Four items, selected by a panel of experts, were included in logistic regressions (i.e., demographic characteristics and patients’ impaired functions) to identify the differing dyadic profiles. Family caregivers’ and patients’ attitudes towards the social repercussions of stroke were similar. Patients with motor deficiencies tended to underestimate the upheaval brought to their couple by stroke, whereas caregivers of language-impaired patients tended to underestimate their feelings of shame and demeaning. Communication disturbances, but also residual physical disabilities in stroke survivors, may affect the understanding of each other’s attitudes within dyads. In order to avoid dysfunctional relationships between family caregivers and patients, healthcare professionals need to pay special attention to this issue, especially in cases of aphasia and motor deficiencies.

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Preferred Place of Death for Patients With Incurable Cancer and Their Family Caregivers in Egypt

Background: Little is known about the place of death of patients with cancer in Eastern Mediterranean countries including Egypt, where palliative care is underdeveloped. Identifying the preferred place of death (PPoD) is important for the development of appropriate palliative care models in these countries. Objectives: To know the PPoD of Egyptian patients with incurable cancer and their family caregivers (FCGs) and to determine the factors that may impact their preferences. Methods: An observational cross-sectional study that included 301 dyads of patients with incurable cancer and one of their FCGs. A questionnaire was designed to collect data about the characteristics of patients and FCGs as well as their preferences. Results: The majority of dyads (272/301, 90.4%) answered the PPoD question. Home was the PPoD in 93% of patients and 90.1% of FCGs (P = .218). The congruence between patients' and FCGs' PPoD was 92.7% (κ = 0.526). In multivariate analysis, poorer performance status (Eastern Cooperative Oncology Group 3 or 4) and full employment of FCGs associated significantly with patients' preference to die in hospital (odds ratio [OR] = 3.015 [95% confidence interval [CI]: 1.004-9.054], P = .049 and OR = 4.402 [95% CI: 1.561-12.417], P = .005, respectively), while poorer performance status and nonreferral to the palliative medicine unit were associated with FCGs' preference of hospital death (OR = 2.705 [95% CI: 1.105-6.626], P = .029 and OR = 2.537 [95% CI: 1.082-5.948], P = .032, respectively). Conclusions: The results of the current study suggest that home is the PPoD for the vast majority of Egyptian patients with incurable cancer and their FCGs. Palliative care interventions that promote home death of patients with incurable cancer are needed in Egypt.

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Post-traumatic stress symptoms in family caregivers of intensive care unit patients: A longitudinal study

Objectives To describe the prevalence and trajectory of family caregivers' post-traumatic stress symptoms during the first year after a patient's admission to the intensive care unit and identify associations between family caregivers' background characteristics, hope and post-traumatic stress symptoms. Research methodology/designs Family caregivers of intensive care unit patients (n = 211) completed questionnaires at patient admission to the intensive care unit and thereafter at 1, 3, 6, and 12 months. Mixed-model analyses were performed. Setting Four intensive care units in a university hospital in Norway. Main outcome measures Impact of Event Scale—Revised and Herth Hope Index. Results On admission, 54% of family caregivers reported high post-traumatic stress symptom levels, which decreased during the first six months after patient discharge. Lower levels of hope, being younger, having more comorbidities and being on sick leave were associated with higher post-traumatic stress symptom levels. Being the parent of the patient was associated with decreased post-traumatic stress symptom levels. Conclusions Family caregivers of intensive care unit patients report high levels of post-traumatic stress symptoms. Higher levels of hope were associated with fewer post-traumatic stress symptoms.

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Trajectories of caregiver burden in families of adult cystic fibrosis patients

Objectives: Little is known about the experience of family caregivers of adults with cystic fibrosis (CF). This information is important for the identification of caregivers at risk for burden. Methods: This was a longitudinal analysis of survey data obtained from caregivers of adult CF patients participating in an early intervention palliative care trial. Caregivers completed the validated Brief Assessment Scale for Caregivers (BASC) repeatedly over a 28-month period. Mixed-effects modeling evaluated multivariate associations with positive and negative caregiver perceptions over time. Results: Of the 54 caregivers, 47.9% were spouses. The mean age was 50.9 years (SD = 13.2); 72.2% were women; 75.9% were married; and 63.0% were employed. At baseline, the BASC revealed large variations in positive and negative perceptions of caregiving. Although average scores over time were unchanging, variation was greater across caregivers than within caregivers (0.49 vs. 0.27, respectively). At baseline, the positive impact of caregiving in the sample was higher than the negative impact. Multivariate analysis revealed that patients' baseline pulmonary function and their full-time employment status predicted caregiver burden over time. Significance of results: Caregivers of CF patients varied in their positive and negative caregiving experiences, although burden levels in individual caregivers were stable over time. When the disease was advanced, caregivers of CF patients experienced more overall burden but also more positive impact. This suggests that the role of caregivers may become more meaningful as disease severity worsens. In addition, full-time patient employment was associated with lower caregiver burden regardless of disease severity. This suggests that burden in CF caregivers may be predicted by financial strain or benefits conferred by patient employment. These associations require further investigation to determine whether highly burdened caregivers can be identified and assisted using tailored interventions.

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Family Caregivers of Older Adults, 1999–2015: Trends in Characteristics, Circumstances, and Role-Related Appraisal

Purpose of Study To assess trends in family caregiving between 1999 and 2015. Design and Methods We construct nationally representative profiles of community-dwelling older adults receiving help with self-care or indoor mobility and their "primary" family or unpaid caregiver using the 1999 and 2004 National Long Term Care Survey, 2011 and 2015 National Health and Aging Trends Study, and linked caregiver surveys. Trends are examined. Results Older adults receiving help were incrementally younger, more racially diverse, and better educated in 2015. Primary caregivers overwhelmingly continued to be spouses and adult children. Arrangements were increasingly 4 years or longer in duration (shifting from 44.8% in 1999 to 60.5% by 2015). On average, primary caregivers provided about or in excess of 30 hr per week at all four time points. Spouses provided fewer hours of care, were twice as likely to work, and half as likely to report substantial emotional, physical, and financial difficulty due to caregiving in 2015 than 1999. Adult children provided comparable hours of care to a more impaired population; a similar proportion reported substantial caregiving-related difficulty at each time. Use of respite care nearly doubled from 8.5% in 1999 to 15.7% in 2015. Dementia caregivers were less likely to report substantial physical and financial difficulty and more likely to use respite care in 2015 than 1999. Implications Family caregivers' circumstances generally improved during the 16-year period. Results diverge from prevailing concerns regarding the state of family caregiving and demonstrate the importance of longitudinally monitoring trends in late-life family caregiving.

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Self-efficacy and Stress Among Informal Caregivers of Individuals at End of Life

Researchers have established associations between the stressors of providing informal care and caregiver health risks. Despite the negative consequences, researchers have identified the existence of protective factors that have the potential to buffer or prevent stress. The purpose of this study was to determine the relationship between self-efficacy and stress in adult informal caregivers providing end-of-life care. This cross-sectional, associational study analyzed data from questionnaires completed by adult informal caregivers providing end-of-life care for an adult in North Texas. Questionnaires provided measures of self-efficacy, stress, and caregiver perceived health. Findings indicated caregiver self-efficacy globally had a significant correlation with stress, whereas caregivers' confidence in caring for themselves had a significant negative relationship with perceived stress. Specifically, study findings indicate caregivers with greater confidence in managing demands of caregiving have lower levels of stress, and caregivers with greater confidence in caring for themselves, specifically, have lower levels of perceived stress. Study findings highlight the importance of caregivers' self-care needs. Health care practitioners should recognize and intervene to support caregivers' self-care needs in order to prevent additional, needless health problems in this population.

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Informal caregiving and personality: Results of a population-based longitudinal study in Germany

Background: The aim of this study was to identify whether informal caregiving time is associated with personality factors longitudinally. Methods: Longitudinal data were gathered from the German Socio-Economic Panel (GSOEP), a large nationally representative, longitudinal study of German households beginning in 1984. Focusing on the association between informal caregiving and personality factors, data were used from the years 2005, 2009 and 2013. The GSOEP Big Five Inventory was used to assess personality factors. Informal caregiving hours were used as explanatory variable. The explanatory variable informal caregiving hours was categorized into 0 hours (reference), 1 hours, 2 hours, 3 hours, 4 hours, and 5 hours and more. Age, marital status, educational level, employment status, income, self-rated health and disability were included as potential confounders in regression analysis. Results: Adjusting for potential confounders, fixed effects regressions showed that whether or not someone provides informal care is markedly associated with changes in neuroticism. Given that an individual provides informal care, the actual number of care hours did not matter in most cases. Informal caregiving was not associated with openness to experience, extraversion and agreeableness. As regards conscientiousness, only ‘5 hours and more’ on a typical Sunday was associated with an increase in conscientiousness (β = .32, p < .05). Informal caregiving on a typical weekday or Saturday was not associated with changes in conscientiousness. Conclusion: Our findings stress the longitudinal association between informal caregiving and neuroticism.

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Predictors of psychological distress and sleep quality in former family caregivers of people with dementia

Objectives: The stress-related psychological symptoms experienced by informal family caregivers do not always improve or resolve after the death of the care recipient. The purpose of this study was to explore the independent associations of sociodemographic variables, personality and coping, environmental variables, and caregiver guilt with the sleep quality and psychological distress of former family caregivers of individuals with dementia following care recipient's death.; Method: A cross-sectional, correlational study was conducted with a sample of 171 former family caregivers of people with dementia. Participants completed an online survey comprised of six instruments and demographic items. Caregiver personal variables (e.g. personality and coping), environmental variables, guilt, psychological distress (depressive and anxiety symptoms), and sleep quality were evaluated using psychometrically validated measures.; Results: In bivariate analysis, post-caregiving guilt was significantly associated with depressive and anxiety symptoms (p < 0.01). After controlling for covariates, dysfunctional coping and neuroticism explained 32% of the variance in depressive symptoms (R2 = .52, ΔR2 = .32, F(5, 165) = 36.24, p < .001) and 24% of the variance in anxiety symptoms (R2 = .41, ΔR2 = .24, F(5, 165) = 22.65, p < .001), while dysfunctional coping, pre-loss depression, and extraversion accounted for 16% of the variance in sleep quality (R2 = .30, ΔR2 = .16, F(6, 164) = 11.44, p < .001).; Conclusion: This study demonstrates the critical role of personal variables, including personality traits, coping strategies, and pre-loss depression, in explaining psychological distress and sleep quality in this sample of former dementia caregivers.

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Exploring intergenerational, intra-generational and transnational patterns of family caring in minority ethnic communities: the example of England and Wales

We investigated family caring using established questions from national surveys of 1,206 adults aged 40+ from six minority ethnic communities in England and Wales. We included in our analysis factors that predisposed caring (age, sex, marital status and household composition) and enabled caring (health, material resources, education, employment and cultural values). In the general population, 15% of adults are family carers. Three groups reported lower levels of caring (Black African [12%], Chinese [11%] and Black Caribbean [9%]) and three reported higher levels of caring (Indian [23%], Pakistani [17%] and Bangladeshi [18%]). However, ethnicity predicted caring independent of other factors only for the Indian group.

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Defining and profiling family carers: reflections from Ireland

The word ‘carer’, meaning family carer, is now widely used, especially in Western cultures. However, it is open to interpretation, is employed differently depending on circumstance, sector and setting, is at times resisted as a label by carers themselves, and is evolving as a term and role. This contribution reviews the term ‘carer’ and how it is understood, with particular reference to Ireland. It begins with a brief overview of evidence about the profile of carers in Ireland, including who they support, and then discusses data from a survey of family carers conducted by Care Alliance Ireland – the survey specifically explored the term ‘carer’ and how it is deployed – and some of the implications of these findings for the provision of support to carers in Ireland.

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Caregiver's psychosocial concerns and psychological distress in emergency and trauma care setting

Background: Traumatic brain injury (TBI) will be the third largest killer by the year 2020 in the world. It creates the great amount of morbidity, disability, mortality, and reduces the psychosocial well-being of the patients and their caregivers. Hence, the current paper aimed to explore the psychosocial distress and caregivers' concerns in emergency and trauma care (ETC) setting. Methodology: This study adopted qualitative research design. All caregivers of TBI survivors were considered as a universe of the study. A total of 50 caregivers were recruited, and the predesigned questionnaire was administered. Depression, anxiety, stress scale was used to identify the caregivers' depression, stress, and anxiety. The simple thematic analysis was used to derive the themes from the verbatim data. Data were analyzed using SPSS version 21.0 (SPSS South Asia Pvt.Ltd, Bengaluru, Karnataka, India). Results: In the quantitative analysis, caregivers' mean age was found to be 45 (mean = 45.00 ± 13.83) years. Caregivers had experienced mild depression (13.36 ± 3.07), moderate anxiety (13.70 ± 3.03), and minimum stress (13.66 ± 2.98) levels. Qualitative results identified the following themes: difficulty in accessing timely care, uncertainty about the prognosis and future, family concerns and financial constraints, personal feelings and personal needs, and supportive care. Chi-square test revealed that there was no significant association between gender and depression (χ2 = 2.381 P < 0.12), anxiety (χ2 = 0.01 P < 0.92), and stress (χ2 = 0.235 P < 0.61) levels of caregivers. Conclusion: To accomplish, providing psychosocial care in ETC setting, the role of psychiatric social workers is pivotal. 

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Caregivers satisfaction with intensive care unit services in tertiary care hospital

Background: Caregivers play a vital role in intensive care unit (ICU) because critically ill patients cannot make their own decisions due to their illness. Measuring family satisfaction on quality of ICU care is essential. Hence, the current paper aimed to measure the family caregiver satisfaction in ICU care in tertiary care hospital. Methods: The study adopted descriptive research design conducted from July 2016 to January 2017 at ICU in Emergency and Trauma Care center. A total number of 60 consented caregivers were recruited. An Internationally validated Family satisfaction survey questionnaire (FS) was used. Continuous variables of the data were described by mean standard deviation and categorical variables by frequency (%). Normality of the continuous variables was checked by Shapiro–Wilk test. Kruskal–Wallis test was used to compare the average FS score between the groups. Results: Results showed that caregiver age was ranged between 25 and 66 years with mean age 40 (±19). Among the caregivers, 75% were male and 25% were female of which 75% were married and remaining were unmarried. Around half of the caregivers (48.3) were educated up to primary or secondary and 26.7% had higher secondary education level. About 46.7% involved in manual laborers and 36.7% were working in the private sector. Family members had taken primary caregiving role without prior experience (81.7%) at ICU. Almost 95% of the caregivers were highly satisfied with ICU care and only 5% were not satisfied. Conclusion: Majority of caregivers are satisfied with ICU care. However, adequate measures need to be taken to ensure the complete satisfaction among caregivers at ICU.

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Death Anxiety and Quality of Life in Iranian Caregivers of Patients With Cancer

Background: Concerns about death may alienate and negatively impact communication among family members of patients with life-threatening illness. Little is known about the relationship of death anxiety to quality of life in cancer family caregivers. Objective: The aim of this study was to examine relationships between sociodemographic and patient-related factors, social support, and religiosity with death anxiety and quality of life in Iranian cancer family caregivers. Methods: Three hundred thirty family caregivers from an urban regional cancer institute in Iran participated in a descriptive-correlational study that incorporated sociodemographic surveys and validated death anxiety (Templer Scale) and Quality of life (Family Version) instruments. Results: Caregivers reported moderate levels of death anxiety and decrements in QOL. Quality of life was inversely associated with death anxiety (r = -0.30, P .001). Female caregivers who were daughters had higher death anxiety, whereas male caregivers who were sons reported higher quality of life. Conclusions: Death anxiety is associated with lowered quality of life in Iranian family caregivers. Multiple factors may impact death anxiety and quality of life relevant to the socioreligious milieu. Implications for Practice: Addressing concerns that increase death anxiety may improve quality of life and lower stress associated with adapting to the family caregiver role. Caregiving responsibilities, added to challenges associated with personal, family, and professional life, impact multiple aspects of QOL. As nurses increasingly care for patients from diverse backgrounds, it becomes more imperative that support for family caregivers that promotes psychological adaptation and quality of life is needed. References

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Empowerment of family caregivers of adults and elderly persons: A concept analysis

Aim This concept analysis defined and described the components of empowerment of family caregivers who care for adults and the elderly. Methods Rodgers evolutionary method of concept analysis was used. Data sources included Pub Med, CINAHL, Scopus, and Igaku Chuo Zasshi. Thirty articles published between 1995 and 2015 focusing on the empowerment of family caregivers providing care to adults and the elderly were selected. Result The analysis reveals 6 attributes, 5 antecedents, and 5 consequences. In addition, the results reveal structured aspects of family caregivers, care receivers, and other people surrounding them, and their relationships. Empowerment of adults' and elders' family caregivers may be defined as "positive control of one's mind and body, cultivating a positive attitude, proactively attempting to understand one's role as a caregiver to improve caregiving capabilities, focusing on others as well as oneself, supporting the independence of the care receiver, and creating constructive relationships with other people surrounding them." Conclusion The components of empowerment clarified in this research can be used for the measurement of and interventions aimed at improving empowerment among family caregivers. Furthermore, clarifying the definition of empowerment among family caregivers enables researchers to better distinguish empowerment from similar concepts in the future. 

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Identifying and understanding the health and social care needs of older adults with multiple chronic conditions and their caregivers: a scoping review

BACKGROUND: As the population is aging, the number of persons living with multiple chronic conditions (MCC) is expected to increase. This review seeks to answer two research questions from the perspectives of older adults with MCC, their caregivers and their health care providers (HCPs): 1) What are the health and social care needs of community-dwelling older adults with MCC and their caregivers? and 2) How do social and structural determinants of health impact these health and social care needs? METHODS: We conducted a scoping review guided by a refinement of the Arksey & O'Malley framework. Articles were included if participants were 55 years or older and have at least two chronic conditions. We searched seven electronic databases. The data were summarized using thematic analysis. RESULTS: 36 studies were included in this review: 28 studies included participants with MCC; 12 studies included HCPs; five studies included caregivers. The quality of the studies ranged from moderate to good. Five main areas of needs were identified: need for information; coordination of services and supports; preventive, maintenance and restorative strategies; training for older adults, caregivers and HCPs to help manage the older adults' complex conditions; and the need for person-centred approaches. Structural and social determinants of health such as socioeconomic status, education and access influenced the needs of older adults with MCC. CONCLUSION: The review highlights that most of the needs of older adults with MCC focus on lack of access to information and coordination of care. The main structural and social determinants that influenced older adults' needs were their level of education/health literacy and their socioeconomic status. [Abstract]

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Informal caregiving and markers of adiposity in the UK Household Longitudinal Study

OBJECTIVES: The aim was to investigate associations between caregiving and adiposity using a representative UK longitudinal study. We also investigated whether associations differed by age, gender and caregiving characteristics. METHODS: Data on 9,421 participants aged 16+ from three waves (2009-2012) of the UK Household Longitudinal Study were used. Body mass index, waist circumference and percentage body fat were assessed. Caregiving and caregiving characteristics (hours per week, number of people cared for, co-resident caregiving and combining working and caregiving) was available from the prior wave. Gender-stratified associations between caregiving/caregiving characteristics with adiposity were tested. Covariates included caregiver's health, socioeconomic position, parenthood and partnerships. RESULTS: Caregiving was associated with higher adiposity for women but not men. Younger women caregivers had particularly higher levels of adiposity. Men combining part-time paid work with caregiving had higher levels of adiposity than men working full-time and not caregiving. Women aged 16-44 or 65+ had particularly high levels of adiposity when combining full-time work and caregiving, compared to full-time work alone. CONCLUSION: The health of caregivers should be a public health priority, particularly for younger women and those combining paid work with caregiving responsibilities. 

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Examining associations of functional deficits and mood states with empathic responses of stroke family caregivers

Background: Stroke is one of the most prevalent chronic illnesses worldwide. Family caregivers can make a significant contribution toward patients' recovery. However, the patient's functional deficits and the caregiver's mood states can impact the caregiver's motivation to engage in empathic responses toward patients. Clinicians need help in recognizing patients at risk for not receiving empathic responses from family caregivers who are pivotal in long-term help and emotional support. Objective: The aim of this study was to examine possible associations of family caregiver perceptions of functional deficits of patients who are poststroke and caregiver mood states with their empathic responses toward patients who are poststroke. Methodology: As guided by Davis' organizational model on empathy, we conducted a correlational descriptive study of associations among patient functional deficits, caregiver mood states, and caregiver empathic responses toward patients who are poststroke. Participants were requested to complete four questionnaires. Results: Caregiver fatigue was the only mood state significantly associated with their empathic responses toward patients who are poststroke. Conclusions: The results of the current study contribute to the current state of the literature on poststroke care at home by highlighting the impact of caregiver mood states, particularly caregiver fatigue, on their empathic responses toward patients who are poststroke. Recommendations for clinical practice and future studies were made based on this study's results. 

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Characteristics of the Family Caregivers Who Did Not Benefit From a Successful Psychoeducational Group Intervention During Palliative Cancer Care: A Prospective Correlational Study

Background: Although there has been a steady increase in intervention studies aimed toward supporting family caregivers in palliative cancer care, they often report modest effect sizes and there is a lack of knowledge about possible barriers to intervention effectiveness. Objective: The aim of this study is to explore the characteristics of family caregivers who did not benefit from a successful psychoeducational group intervention compared with the characteristics of those who did. Intervention/Methods: A psychoeducational intervention for family caregivers was delivered at 10 palliative settings in Sweden. Questionnaires were used to collect data at baseline and following the intervention. The Preparedness for Caregiving Scale was the main outcome for the study and was used to decide whether or not the family caregiver had benefited from the intervention (Preparedness for Caregiving Scale difference score = 0 vs = 1). Results: A total of 82 family caregivers completed the intervention and follow-up. Caregivers who did not benefit from the intervention had significantly higher ratings of their preparedness and competence for caregiving and their health at baseline compared with the group who benefited. They also experienced lower levels of environmental burden and a trend toward fewer symptoms of depression. Conclusions: Family caregivers who did not benefit from the intervention tended to be less vulnerable at baseline. Hence, the potential to improve their ratings was smaller than for the group who did benefit. Implications for Practice: Determining family caregivers in cancer and palliative care who are more likely to benefit from an intervention needs to be explored further in research.

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Psychological Correlates of Burden Among Jordanian Caregivers of Patients With Serious Mental Illness

PURPOSE To examine prediction power of personality traits, expressed emotion, and coping strategies on caregivers' burden. DESIGNS AND METHODS Cross-sectional descriptive correlational design was used to collect data from 196 caregivers using the Self-Administered Questionnaire from Jordanian caregivers of patients with serious mental illness. FINDINGS Jordanian caregivers had a moderate-to-severe burden level (M = 47.1, SD = 11.5). Burden had a significant negative relationship with coping (r = -.15, p = .04) and significant positive relationship with personality dysfunction (r = .16, p = .021). Emotional expression, coping, and personality were found to be significant predictors of burden (F = 5.16, p = .002). PRACTICE IMPLICATIONS Mental health professionals need to address family caregivers in their plans of care.

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Family Caregiver Contribution to Self-care of Heart Failure: An Application of the Information-Motivation-Behavioral Skills Model

Background: Adherence to self-care behaviors improves outcomes of patients with heart failure (HF). Caregivers play an important role in contributing to self-care. Objective: We aimed to explore the relationships among HF knowledge, perceived control, social support, and family caregiver contribution to self-care of HF, based on the Information-Motivation-Behavioral Skills Model. Methods: Two hundred forty-seven dyads of eligible patients with HF and family caregivers were recruited from a general hospital in China. Structural equation modeling was used to analyze the data obtained with the Caregiver Contribution to Self-care of Heart Failure Index, the Heart Failure Knowledge Test, the Control Attitudes Scale, and the Social Support Rating Scale. Results: In this model, caregiver contribution to self-care maintenance was positively affected by perceived control (β = .148, P = .015) and caregiver confidence in contribution to self-care (β = .293, P < .001). Caregiver contribution to self-care management was positively affected by HF knowledge (β = .270, P < .001), perceived control (β = .140, P = .007), social support (β = .123, P = .019), caregiver confidence in contribution to self-care (β = .328, P < .001), and caregiver contribution to self-care maintenance (β = .148, P = .006). Caregiver confidence in contribution to self-care was positively affected by HF knowledge (β = .334, P < .001). Conclusions: Heart failure knowledge, perceived control, and social support facilitated family caregiver contribution to self-care of HF. Targeted interventions that consider these variables may effectively improve family caregiver contributions to self-care.

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The impact of volunteering on the volunteer: findings from a peer support programme for family carers of people with dementia

With an ageing population, there are increasing numbers of experienced family carers (FCs) who could provide peer support to newer carers in a similar care situation. The aims of this paper are to: (i) use a cross-sectional study design to compare characteristics of volunteers and recipients of a peer support programme for FCs of people with dementia, in terms of demographic background, social networks and psychological well-being; and (ii) use a longitudinal study design to explore the overall impact of the programme on the volunteers in terms of psychological well-being. Data were collected from programmes run in Norfolk, Northamptonshire, Berkshire and four London boroughs between October 2009 and March 2013. The volunteer role entailed empathic listening and encouragement over a 10-month period. Both carer support volunteers (N = 87) and recipient FCs (N = 109) provided baseline demographic information. Data on social networks, personal growth, self-efficacy, service use and well-being (SF-12; EuroQol Visual Analogue Scale; Hospital Anxiety and Depression Scale; Control, Autonomy, Self-Realisation, Pleasure-19) were collected prior to the start of the intervention (N = 43) and at either 3- to 5 month or 10 month follow-up (N = 21). Volunteers were more likely than recipients of support to be female and to have cared for a parent/grandparent rather than spouse. Volunteers were also more psychologically well than support recipients in terms of personal growth, depression and perceived well-being. The longitudinal analysis identified small but significant declines in personal growth and autonomy and a positive correlation between the volunteers' duration of involvement and perceived well-being. These findings suggest that carers who volunteer for emotional support roles are resilient and are at little psychological risk from volunteering. 

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A Multicenter Pilot Study of Burden Among Caregivers of Geriatric Rehabilitation Patients With Neuromusculoskeletal Diseases

Purpose: In this study, we aimed to describe the sociodemographic characteristics of caregivers of patients in a geriatric unit and to clarify the relationship between caregiver burden and specific clinical variables in the patients and the characteristics of the caregivers. Design: Cross-sectional multicenter study. Methods: One hundred twenty-three patients and 123 caregiver dyads, with mean ages of 72.5 ± 7.7 years and 51 ± 14.7 years, respectively, were included. The functional, psychological, and cognitive statuses of the patients were determined, and the sociodemographic characteristics of the caregivers as well as the type and duration of caregiving were recorded. Caregivers completed the Caregiver Burden Inventory (CBI) to measure the perceived burden of care. Most patients were female and generally lived with their family. Findings: Most of the caregivers were family members (90%), female (73.2%), primary school graduates (52.8%), and first-degree relatives (73.1%). The average CBI score was 33, and the highest CBI subscores were for time, developmental, and physical burdens. Caregiver burden correlated with the patient’s ambulatory, psychological, and cognitive status and with the caregiver’s age, gender, income level, and duration of caregiving. Conclusions: We have highlighted the relationship between caregiver and patient characteristics in a cohort of elderly Turkish patients with neurological and musculoskeletal disorders. In particular, we have highlighted the heavy caregiver burden in a developing country. Clinical Relevance: Our results may guide the nurses to understand the requirements of caregivers and to help them find suitable resources that would meet their needs to cope with their burden.

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Time Use and Experienced Wellbeing of Older Caregivers: A Sequence Analysis

The diminished wellbeing of caregivers is well documented, but studies typically draw upon coarse measures of time use and thus provide limited understanding of the role of specific care activities in the daily lives of care providers. This study uses time diary data to explore whether there are signature care patterns throughout the day and whether these care patterns have implications for caregivers’ experienced wellbeing.Using a national sample of 511 time diaries from older caregivers in the Disability and Use of Time supplement to the Panel Study of Income Dynamics, we examine minutes of care provided on the prior day, overall and for four broad care categories (household, personal care, transportation, and visiting), and patterns of care over the day, the latter based on sequence and cluster analysis.Older caregivers spend on average 2.3 hr providing care to another adult on care days. Caregiving follows a roller-coaster pattern over the day, peaking at mealtimes. Sequence analysis suggests five distinctive caregiving patterns, which vary by both demographic characteristics of the caregiver (gender, work status) and care arrangement type (relationship to recipient, whether sole caregiver to recipient). The 40% who provide only marginal assistance of about 1 hr report lower experienced wellbeing than the 28% who provide sporadic assistance with a mix of activities for about 2 hr.A substantial share of older caregivers provides only 1 hr of assistance on a given day but appears to be at risk for reduced wellbeing. Better understanding of the reason for their marginal involvement and reduced wellbeing is warranted.

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Health Information–Seeking Behaviors of Family Caregivers: Analysis of the Health Information National Trends Survey

Background: The growing population of aging adults relies on informal caregivers to help meet their health care needs, get help with decision making, and gather health information. Objective: The objective of this study was to examine health information–seeking behaviors among caregivers and to identify caregiver characteristics that contribute to difficulty in seeking health information. Methods: Data from the Health Information National Trends Survey 5, Cycle 1 (N=3181) were used to compare health information seeking of caregivers (n=391) with noncaregivers (n=2790). Results: Caregivers sought health information for themselves and others using computers, smartphones, or other electronic means more frequently than noncaregivers. Caregivers born outside of the United States reported greater difficulty seeking health information (beta=.42; P=.02). Nonwhite caregivers (beta =−.33; P=.03), those with less education (beta =−.35; P=.02), those with private insurance (beta =−.37; P=.01), and those without a regular health care provider (beta =−.35; P=.01) had less confidence seeking health information. Caregivers with higher income had more confidence (beta =.12; P≤.001) seeking health information. Conclusions: This study highlights the prevalence of electronic means to find health information among caregivers. Notable differences in difficulty and confidence in health information seeking exist between caregivers, indicating the need for more attention to the socioeconomic status and caregivers born outside of the United States. Findings can guide efforts to optimize caregivers’ health information–seeking experiences.

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Specialist nursing support for unpaid carers of people with dementia: a mixed-methods feasibility study

Background: Unpaid carers are the mainstay of support for people with dementia. Admiral Nursing (AN) is the only specialist nursing service that specifically focuses on supporting such carers, but evidence of its effectiveness, costs and relationships with other health and social care services is limited. This project aimed to address this gap and explore the feasibility of a full-scale formal evaluation. Objectives: To explore the relationships between characteristics of carers and people with dementia, service type and input and outcomes; to develop and test data collection methods for subsequent economic evaluation; to explore the effect of AN on outcomes and costs, compared with usual care; to explore the perceived system-wide impact of specialist support for carers of people with dementia, compared with usual care; and to implement new data collection methods in AN, which could also be used by other services, to facilitate evaluation. Design: A mixed-methods study, using secondary analysis of an administrative data set, and primary (cross-sectional) quantitative and qualitative data collection. Setting: Qualitative research with carers in four areas of England; a survey of carers in 32 local authority areas (16 with and 16 without AN); and qualitative interviews with professionals in four areas. Participants: Thirty-five carers of people with dementia and 20 professionals were interviewed qualitatively; 346 carers completed in-scope questionnaires (46% through AN services and 54% from matched non-AN areas). Interventions: Specialist nursing support for carers of people with dementia (with AN as an exemplar) compared with usual care. Main outcome measures: The Adult Social Care Outcomes Toolkit for Carers; the EuroQol-5 Dimensions, five-level version; and the Caregiver Self-Efficacy for Managing Dementia Scale. Data sources: Dementia UK’s AN administrative data set. Results: Admiral Nurses are successfully targeting the most complex cases. They work predominantly with older carers who have the main responsibility for the person with dementia, who are heavily involved in caring activity and who may be at risk. Three outcome areas that are important to carers of people with dementia and are potentially affected by receiving support are (1) carer self-efficacy, (2) carer quality of life (3) and carer mental and physical health. The carers in the survey receiving support from AN were older, were more heavily involved in caring and had poorer outcomes than carers not in receipt of such support. When these differences were controlled for, carers supported by AN had better outcomes, although the differences did not reach statistical significance. Health and social care costs were similar in both groups. The perceived system-wide impact of services, such as AN, is not well understood by professional stakeholders. Limitations: Challenges were experienced in identifying similar carers in areas with or without an AN service and in the cross-sectional nature of the work. Conclusions: Specialist nursing support to carers of people with dementia may enable them to continue providing care to the end or very close to the end of the dementia journey. The outcomes for such carers may be no different from, or even slightly better than, those of similar carers without this support, although the costs to health and social care services are the same in each case. Future work: Future research could investigate the impact of specialist support for carers on admission to long-term care. There is also a need for more work to encourage routine use of the selected outcome measures in dementia service delivery. Funding: The National Institute for Health Research Health Services and Delivery Research programme.

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Caregiving load and respite service use: a comparison between older caregivers and younger caregivers

Study aims were to explore differences in predictors of respite care use between older (aged 65+) and younger caregivers (aged 18–64 years), and associations between caregiving load and respite care use using multivariate logistic regression analysis and unpaid caregiver (n= 10,500) data from the 2009 California Health Interview Survey. Caregiving load comprised number of care recipients, weekly hours in caregiving, and caregiving duration. Variables with a significant association with respite care for older caregivers were female gender, income, and health insurance. For younger caregivers, respite care use associations were with ethnicity, caregiving relationship, education, and availability of substitute help.

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Caring for a Person With Dementia on the Margins of Long-Term Care: A Perspective on Burden From 8 European Countries

Objectives To explore associations between carer burden and characteristics of (1) the informal carer, (2) the person with dementia, and (3) the care support network in 8 European countries. Design Cross-sectional study. Setting People with dementia judged at risk of admission to long-term care (LTC) facilities in 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, United Kingdom). Participants A total of 1223 people with dementia supported by community services at home or receiving day care or respite care and their informal carers. Measurements Variables regarding the informal carer included familial relationship and living situation. Variables relating to the person with dementia included cognitive functioning (S-MMSE), neuropsychiatric symptoms (NPI-Q), depressive symptoms (Cornell depression scale), comorbidity (Charlson Comorbidity Index), and physical functioning (Katz Activity of Daily Living [ADL] Index). The care support network was measured using hours of caregiving (ADLs, instrumental ADLs [IADLs], supervision), additional informal care support, and service receipt (home care, day care). Experience of carer burden was recorded using the Zarit Burden Interview. Logistic regression analysis was used to determine factors associated with high carer burden. Results Carer burden was highest in Estonia (mean 39.7/88) and lowest in the Netherlands (mean 26.5/88). High burden was significantly associated with characteristics of the informal carer (family relationship, specifically wives or daughters), of the person with dementia (physical dependency in ADLs; neuropsychiatric symptoms, in particular nighttime behaviors and irritability), the care support network (hours of caregiving supervision; receipt of other informal care support) and country of residence. Conclusion A range of factors are associated with burden in informal carers of people with dementia judged to be on the margins of LTC. Support for informal carers needs to take account of gender differences. The dual challenges of distressed behaviors and difficulties in ADLs by the person with dementia may be addressed by specific nonpharmacological interventions focusing on both elements. The potential protective effect of additional informal support to carers highlights the importance of peer support or better targeted home support services. The implementation of appropriate and tailored interventions to reduce burden by supporting informal carers may enable people with dementia to remain at home for longer. 

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Illness representations in caregivers of people with dementia

Objectives: Illness representations shape responses to illness experienced by the self or by others. The illness representations held by family members of those with long-term conditions such as dementia influence their understanding of what is happening to the person and how they respond and provide support. The aim of this study is to explore components of illness representations (label, cause, control and timeline) in caregivers of people with dementia. Method: This was an exploratory study; the data reported came from the Memory Impairment and Dementia Awareness Study (MIDAS). Data from semi-structured interviews with 50 caregivers of people with dementia were analysed using content analysis. Results: The majority of caregivers gave accounts that appeared to endorse a medical/diagnostic label, although many used different terms interchangeably. Caregivers differentiated between direct causes and contributory factors, but the predominant explanation was that dementia had a biological cause. Other perceived causes were hereditary factors, ageing, lifestyle, life events and environmental factors. A limited number of caregivers were able to identify things that people with dementia could do to help manage the condition, while others thought nothing could be done. There were varying views about the efficacy of medication. In terms of timeline, there was considerable uncertainty about how dementia would progress over time. Conclusion: The extent of uncertainty about the cause, timeline and controllability of dementia indicated that caregivers need information on these areas. Tailored information and support taking account of caregivers' existing representations may be most beneficial.

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Predicting perceived medication-related hassles in dementia family caregivers

Objective: This study examined predictors of medication administration hassles reported by intergenerational dementia family caregivers. Methods: A sample of 53 women who aided a cognitively impaired older adult with healthcare and who identified as inter-generational caregivers provided self-report medication management and psychosocial data. Results: Hierarchical multiple regression analyses revealed that six independent variables hypothesized for this model, the total number of prescription medications managed by caregivers, educational attainment, care-recipient functional impairment, care-recipient cognitive impairment, caregiver depressive symptomatology, and self-reported feelings of preparedness for the caregiving role together significantly predicted caregiver medication administration hassles scores F(1, 48) = 4.90, p = .032, and accounted for approximately 25% of the variance of self-reported hassles (adjusted R2 = .247). Discussion: Future interventions may reduce medication-related hassles by providing psychoeducation about healthcare, medication management, and strategies for coping with care-related stressors and depressed mood.

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Caregiver characteristics and bereavement needs: findings from a population study

Background: Globally, most care for people with life-limiting illnesses is provided by informal caregivers. Identifying characteristics of caregivers that may have unmet needs and negative outcomes can help provide better support to facilitate adjustment. Aim: The authors compared characteristics, expressed unmet needs and outcomes for spousal caregivers, with other caregivers at the end of life, by gender and age. Design: The South Australian Health Omnibus is an annual, random, face-to-face, cross-sectional survey wherein respondents are asked about end-of-life care. Setting/participants: Participants were aged over 15 years, resided in households in South Australia and had someone close to them die from a terminal illness in the last 5 years. Results: Of the 1540 respondents who provided hands-on care for someone close at the end of life, 155 were widows/widowers. Bereaved spousal caregivers were more likely to be older, female, better educated, have lower incomes, less full-time work, English as second language, sought help with grief and provided more day-to-day care for longer periods. Spousal caregivers were less likely to be willing to take on caregiving again, less able to ‘move on’ with life and needed greater emotional support and information about illness and services. The only difference between widows and widowers was older age of spouse in women. Younger spousal caregivers perceived greater unmet emotional needs and were significantly less likely to be able to ‘move on’. Conclusion: Spousal caregivers are different from other caregivers, with more intense needs that are not fully met. These have implications for bereavement, health and social services.

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Living with a parent with dementia: a family resilience study

The aim of this study was to identify factors associated with family resilience in families caring for a parent with dementia. A mixed-methods approach was followed to collect data from a convenience sample drawn from the Cape Metropolitan area in the Western Cape, South Africa. The study sample comprised 47 families in which adult children were caring for a parent with dementia. The quantitative data analysis was conducted using analyses of variance (ANOVA), Pearson’s product–moment correlation coefficients and a best-subsets multiple regression analysis. Qualitative data were analysed using thematic content analysis. It was found that acceptance, optimism, positive communication patterns, family connectedness, spirituality, social support, economic resources and the effective management of symptoms helped these families adapt to the burdens of dementia care. In addition to expanding the literature regarding family resilience, the findings could be used to develop interventions tailored to the needs of these families caring for a parent with dementia to create a family environment that enhances adjustment and adaptation.

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Caregiver Well-being and Patient Outcomes in Heart Failure: A Meta-analysis

Background: Despite evidence from the broader caregiving literature about the interdependent nature of the caregiving dyad, few studies in heart failure (HF) have examined associations between caregiver and patient characteristics. Objective: The aim of this study is to quantitatively synthesize the relationships between caregiver well-being and patient outcomes. Methods: The MEDLINE, PsycINFO, and CINAHL databases were searched for studies of adult HF patients and informal caregivers that tested the relationship between caregiver well-being (perceived strain and psychological distress) and patient outcomes of interest. Summary effects across studies were estimated using random effects meta-analysis following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Results: A total of 15 articles meeting inclusion criteria were included in the meta-analysis. Taking into account differences across studies, higher caregiver strain was associated significantly with greater patient symptoms (Fisher z = 0.22, P < .001) and higher caregiver strain was associated significantly with lower patient quality of life (Fisher z = -0.36, P < .001). Relationships between caregiver psychological distress and both patient symptoms and quality of life were not significant. Although individual studies largely found significant relationships between worse caregiver well-being and higher patient clinical event-risk, these studies were not amenable to meta-analysis because of substantial variation in event-risk measures. Conclusions: Clinical management and research approaches that acknowledge the interdependent nature of the caregiving dyad hold great potential to benefit both patients and caregivers.

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Predictors of quality of life and depression among Korean‐American cancer patients and their family caregivers

Objective This study examined social, cultural, and appraisal factors associated with Korean‐American cancer patients' and their family caregivers' quality of life (QOL) and depression. Methods Data were from Korean‐American cancer patients and their family caregivers (N = 60 dyads) living in the United States. Study aims were examined using descriptive statistics and multiple regression. Results For patients, higher social support and lower negative appraisal of illness predicted higher patient QOL; negative appraisal of illness also predicted higher patient depression. For caregivers, older age, having fewer traditional Korean values, and more modern (individualistic) values predicted higher caregiver QOL. Caregivers who held more modern values also had less depression. Conclusions Higher support and less negative appraisal predicted better QOL in patients. For caregivers however, the type of cultural values they held (tradition or modern) was a key factor that predicted level of QOL and depression. Assessment of support and appraisal as well as attention to cultural values may enhance their QOL and reduce depression.

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Carers' beliefs about counselling: a community participatory study in Wales

This interpretivist community participatory study explores carers’ beliefs about the potential usefulness of counselling in relation to the caring role. Twenty semi-structured interviews with carers were transcribed and analysed thematically. All participants thought counselling could potentially be helpful to carers, but their ideas about the ways in which it would help varied according to whether or not they had personal experience of counselling. Only carers with counselling experience had an awareness of counselling as focussing on changing feelings, thoughts, attitudes and behaviours. The implications of the findings for the provision of counselling services are discussed.

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Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries

Background People with dementia and informal carers often access formal care late in the process of dementia. The barriers and facilitators to service use from the perspectives of different stakeholders involved are not well understood. Thus, we aimed to explore the barriers and facilitators of access to and utilisation of formal care from the perspectives of people with dementia, their informal carers and health and social care professionals. Method Focus groups with people with dementia, informal carers and professionals were conducted in eight European countries. Recruitment targeted people with dementia, informal carers with experience of formal care and professionals involved in providing (access to) formal care. Qualitative content analysis using open coding was used on a national level. Cross-national synthesis was based on the translated national reports. Results Overall, 55 focus groups with 261 participants were conducted, involving 51 people with dementia, 96 informal carers and 114 professionals. Sixteen categories describing barriers and facilitators were identified, referring to three global themes: Aspects related to 1) individuals involved, 2) the system or 3) overarching aspects. The attitudes and beliefs of people with dementia and their carers may have a major impact, and they often serve as barriers. Formal care was perceived as a threat to the individual independence of people with dementia and was thus avoided as long as possible. A healthcare professional serving as a constant key contact person could be an essential facilitator to overcome these barriers. Contact should be initiated proactively, as early as possible, and a trusting and consistent relationship needs to be established. Beyond that, the findings largely confirm former research and show that barriers to accessing and using formal care still exist across Europe despite a number of national and European initiatives. Conclusion Further investigations are needed to elaborate how the concept of a key contact person could be integrated with existing case management approaches and how the independence and autonomy of people with dementia can be strengthened when formal care needs to be accessed and used. These may be meaningful facilitators regarding enhanced access to formal care for people with dementia and their families. Electronic supplementary material The online version of this article (10.1186/s12877-018-0816-1) contains supplementary material, which is available to authorized users.

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Do attachment anxiety and hostility mediate the relationship between experiential avoidance and interpersonal problems in mental health carers?

Carers of people with mental illness frequently report interpersonal difficulties in their caring relationship, and experiential avoidance likely contributes to these problems. This study aimed to examine the relationship between experiential avoidance and eight interpersonal problem domains amongst lay mental health carers, and tested the mediating role of attachment anxiety and hostility. In addition, an alternative (reverse) mediation was tested in which experiential avoidance played the mediating role. A cross-sectional community-based sample of 145 mental health carers completed a questionnaire containing demographics and measures of interpersonal problems, experiential avoidance, attachment anxiety and hostility. Results indicated the relationship between experiential avoidance and interpersonal problems was fully mediated for the interpersonal problem domains of cold/distant and socially inhibited. Partial mediation was evident for the vindictive/self-centered, non-assertive, overly accommodating, self-sacrificing and intrusive/needy domains. No mediation occurred for the domineering/controlling domain. Alternative (reverse) model findings indicated partial/full mediation for the overly accommodating, domineering/controlling and vindictive/self-centered domains, and no mediation for the remaining five domains. Although tentative, findings suggest a mechanism for the relationship between experiential avoidance and particular domains of interpersonal problems that warrants further investigation. The importance of our data is highlighted by the burden and difficult relationships experienced by mental health carers, that requires targeted and effective psychological treatment.

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Spotlight: Mind the care gap – exposing the health system’s vulnerability to the gap between family care provision and anticipated demand

This Spotlight offers an analysis of family carers, those who provide care and support on an unpaid basis to people who are sick, disabled or frail in the community. It explores how demand for care at home is likely to increase dramatically while the future supply of family carers may be limited by demographic factors. High calculations of the monetary value of family care to the State underscore it’s vulnerability to any future shortage in family carers. Current developments which may have an impact on carers’ lives and the future supply of carers are considered.

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Recovery for Carers of People with Psychosis: A Longitudinal Population-Based Study with Implications for Social Work

This longitudinal study using the sampling frame of the second Australian prevalence study of psychosis aimed to identify predictors of the health and well-being of care-givers of people with psychosis and inform social work recovery-oriented practice. Ninety-eight carers were recruited at baseline and seventy-eight re-interviewed after one year. Correlational and regression analyses were conducted to identify relationships between carer and service user-related factors and predictors of carers’ health and well-being over time. Carers’ poor health and well-being were predicted by a combination of specific service user-related characteristics and care-giving factors. Carers’ assessment of the functioning of their relative/friend with psychosis at baseline had stronger relationships with their own health and well-being at follow-up than other factors. Carers’ care-giving burden was predicted by their educational levels and their relative/friend’s cognitive levels over time. To achieve improved health and well-being for carers, services need to consider potential deterioration of carers’ physical health over time, to facilitate appropriate referral of carers with physical health problems and provide psycho-social rehabilitation services to improve the functioning of people with psychosis. Findings provide some evidence to support social work recovery-oriented practice in working with people with psychosis and the routine inclusion of carers in such interventions.

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Carers’ experiences accessing information on supports and services: Learning the social care “dance”

Cities across England will see a growing number of informal carers as the population ages, many of whom do not begin this role equipped with the knowledge they need to access social care services and supports. One of the more significant changes brought by passage of the Care Act of 2014 is local governments’ increased responsibility to improve the provision of information and advice on social care to informal carers, long recognized as a policy priority. To better understand where improvements can be made on a local level in order to achieve the goals laid out in the Care Act, this study considers carers’ experiences accessing information and advice on social care services and supports in a city with a population of over 250,000 in the south of England. This was done through the collection of semi-structure qualitative interviews with 11 carers to people aged 65 and older from April 2015 to July 2015. Thematic analysis of interviews revealed a tension between carers’ varying levels of knowledge and experience with the social care system and information services’ one-size-fits-all approach to providing information. Findings suggest local governments should focus on creating information services that more actively reach out to carers, provide greater guidance to those carers who need it, and work to flexibly meet informal carers information needs, acknowledging that some carers will be less familiar than others with aspects of the social care system.

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Help-seeking barriers and facilitators for affected family members of a relative with alcohol and other drug misuse: A qualitative study

Aims: To identify affected family members' (AFMs) experiences of barriers and facilitators to informal and formal help-seeking for themselves and on behalf of a close relative with alcohol and other drug (AOD) misuse. Methods: Qualitative study, informed by interpretative phenomenological analysis. Semi-structured, audio-recorded, telephone interviews were used to collect data from 31 AFMs. Results: AFMs experienced several overlapping and at times competing help-seeking obstacles and enablers in accessing informal and formal support for themselves and on behalf of their relative with AOD misuse, and these are reflected in two themes and associated sub-themes: barriers to help-seeking and facilitators to help-seeking. Five help-seeking barriers were abstracted from the data: Stigma discourages help-seeking, Difficulty locating informal and formal support services, Previous negative AOD service help-seeking experiences deter subsequent help-seeking, Hopelessness inhibits help-seeking, and Feeling undervalued as an AFM. Three help-seeking facilitators were abstracted from the data: Previous positive help-seeking experiences increase future help-seeking, Overcoming shame and isolation and being open with trusted significant others, and Persevering in help-seeking. Conclusions: AFMs who access informal and formal help sources for themselves, and on behalf of their relative, are more likely to sustain their important support-giving role. Measures to strengthen AFMs' capacity and willingness to support their relative should be founded on an understanding of factors that affect their own help-seeking in addition to those encountered when help-seeking on behalf of their relative. Our findings have implications for the visibility of AOD services and informal support groups on the Internet, organisational culture of some AOD services, valuing the contributions of AFMs, and protecting AFMs and their relatives' privacy. Our findings also have implications for reducing public stigma of AOD misuse, changing some AFMs' scepticism about treatment outcomes, and reinforcing and enhancing AFMs' skills in persevering with help-seeking.

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Help-seeking barriers and facilitators for affected family members of a relative with alcohol and other drug misuse: A qualitative study

Aims: To identify affected family members' (AFMs) experiences of barriers and facilitators to informal and formal help-seeking for themselves and on behalf of a close relative with alcohol and other drug (AOD) misuse. Methods: Qualitative study, informed by interpretative phenomenological analysis. Semi-structured, audio-recorded, telephone interviews were used to collect data from 31 AFMs. Results: AFMs experienced several overlapping and at times competing help-seeking obstacles and enablers in accessing informal and formal support for themselves and on behalf of their relative with AOD misuse, and these are reflected in two themes and associated sub-themes: barriers to help-seeking and facilitators to help-seeking. Five help-seeking barriers were abstracted from the data: Stigma discourages help-seeking, Difficulty locating informal and formal support services, Previous negative AOD service help-seeking experiences deter subsequent help-seeking, Hopelessness inhibits help-seeking, and Feeling undervalued as an AFM. Three help-seeking facilitators were abstracted from the data: Previous positive help-seeking experiences increase future help-seeking, Overcoming shame and isolation and being open with trusted significant others, and Persevering in help-seeking. Conclusions: AFMs who access informal and formal help sources for themselves, and on behalf of their relative, are more likely to sustain their important support-giving role. Measures to strengthen AFMs' capacity and willingness to support their relative should be founded on an understanding of factors that affect their own help-seeking in addition to those encountered when help-seeking on behalf of their relative. Our findings have implications for the visibility of AOD services and informal support groups on the Internet, organisational culture of some AOD services, valuing the contributions of AFMs, and protecting AFMs and their relatives' privacy. Our findings also have implications for reducing public stigma of AOD misuse, changing some AFMs' scepticism about treatment outcomes, and reinforcing and enhancing AFMs' skills in persevering with help-seeking.

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Impact of a Tailored Multicomponent Interdisciplinary Intervention on Family Caregiver Preparedness

In 2013, nearly 43.5 million Americans provided 37 billion hours of uncompensated care to their loved ones. Despite their significant contributions, family caregivers often feel inadequately prepared for their caregiving roles resulting in increased caregiver burden, which impacts their health and well-being. To enhance family caregivers’ sense of preparedness, a tailored multicomponent interdisciplinary caregiver intervention was implemented in an inpatient rehabilitation unit of an urban community hospital in the Midwest.

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Trajectories of positive aspects of caregiving among family caregivers of stroke-survivors: the differential impact of stroke-survivor disability

Objective To delineate positive aspects of caregiving trajectories among family caregivers of stroke-survivors and determine the impact of stroke-survivor disability, a time-varying factor, on the delineated trajectories. Methods In a longitudinal study, family caregivers of 173 stroke-survivors in Singapore were administered the Positive Aspects of Caregiving scale (PAC scale) thrice (baseline/3 months/6 months). Group-based trajectory modeling delineated positive aspects of caregiving trajectories and identified the impact of stroke-survivor disability on the trajectories. Results Two distinct positive aspects of caregiving trajectories, Persistently Low and Persistently High were delineated. Increase in stroke-survivor disability was associated with a significant downward shift (reduction in positive aspects of caregiving) of the Persistently Low trajectory and a significant upward shift (increase in positive aspects of caregiving) of the Persistently High trajectory. Older caregivers were more likely to follow the Persistently High trajectory. Conclusions Care professionals should be mindful of the heterogeneity in the longitudinal pattern of positive feelings resulting from care provision among family caregivers of stroke-survivors, and the differential impact of stroke-survivor disability on the pattern of positive feelings. Younger caregivers as well as family caregivers who have low positive feelings at the start of their caregiver journey and experience worsening functional disability of their care recipient (stroke-survivor) require greater attention and support.

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Factors moderating the mutual impact of benefit finding between Chinese patients with cancer and their family caregivers: A cross‐sectional study

Objective With growing recognitions of the significance of benefit finding (BF) in cancer practice, research has increased to explore factors that may influence BF in the cancer context. Few studies have focused explicitly on factors influencing BF from the dyadic perspective of cancer patient (CP)‐family caregiver (FC) dyads. The objectives of the study were to examine BF relationship between CPs and FCs and to investigate factors that may modify the BF relationships between CPs and FCs. Methods Participants consisted of 772 dyads of CPs and FCs. Three types of variables were collected as potential modifying factors, including CP‐related variables, FC‐related variables, and psychological‐related variables. Descriptive statistics, T test, Pearson correlations, and subgroup analysis were applied to conduct the data analysis. Results Cancer patients and FCs experienced similar moderate to high BF ranging from 65% to 81%, with the exception of acceptance, in that CPs had higher levels of acceptance than did FCs (P < .05). Various factors modifying the BF relationships between CPs and FCs were identified, including dyads' gender, marital status, education level, employment status, level of being informed about the disease, and cancer type and treatment, anxiety, depression, and self‐efficacy. Conclusions Study findings call attention to the BF, as well as related factors, from the dyadic perspective of CP‐FC dyads. Health care professionals need to include FCs of the CPs in their care and provide them with support, to encourage the CP‐FC dyads to share their experience and improve BF together, and to develop a dyadic‐based intervention program to help enhancing dyads BF.

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Caregiving Attitudes, Personal Loss, and Stress-Related Growth Among Siblings of Adults with Mental Illness

As parents age, well siblings are often asked to assume caregiving responsibilities for their brother or sister with mental illness. However, relatively little is known about how well siblings prioritize sibling caregiving responsibilities with other life demands. We examined well siblings’ attitudes toward self-care and caregiving for their sibling with mental illness (self- and sibling-care) using two cross-sectional samples. The first sample of well siblings (N = 242) was used to examine the psychometric properties of the self- and sibling-care measure (SSCM), designed to assess the degree to which siblings prioritize their own needs and the needs of their sibling with mental illness. A second sample (N = 103) was used to determine the relative contribution of self- and sibling-care attitudes in accounting for variation in well siblings’ reports of personal loss and stress-related personal growth. Results support the psychometric validity of the SSCM and suggest that self- and sibling-care attitudes account for greater variance in scores on perceived personal loss and stress-related growth than demographic or caregiving factors. Our findings support the need to address family care responsibilities and resource limitations through recovery-oriented mental health policies, services, and programs.

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Widening the net: Exploring social determinants of burden of informal carers

Objectives: Providing care for a person with dementia or other chronic illness at home often places stress on the primary caregiver. In an Irish population, ~67% of carers reported experiencing extreme physical or mental tiredness. This study aimed to identify factors that influence carer burden and identify the sub-populations of carers who are most susceptible to burden. Methods: Consecutive carers referred to a local carers’ support organisation completed the following measurements: the Neuropsychiatric Inventory, Zarit Burden Interview, Social Network Index, General Health Questionnaire, Short Form Survey, Hamilton Depression Rating Scale, Brown’s Locus of Control scale and provided demographic data on themselves and their patient. Results: The sample consisted 53 carers, mean age: 64.5±11.7, of whom 43 (81.1%) were females. A linear regression model found significant independent (p<0.05) factors for carer burden were: increased behavioural problems of the patient, carer characteristics including female gender, younger age, high number of contacts, lower physical functioning and emotional problems, while protective factors were marriage and higher number of embedded networks. Conclusions: The ability to predict which carers are more susceptible to burden allows service providers to more quickly and accurately identify ‘higher risk’ carers, facilitating routine check-ups by physicians and carer support services.

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Informal Caregivers of Cancer Patients: Review of Interventions, Care Activities, and Outcomes

Family and friends are important resources for patients during cancer treatment and warrant an expanded review of not only what they contribute to patient care but also the support they need and the personal consequences of caregiving. A review of 14 randomized controlled trials published between 2009 and 2016 was completed utilizing the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. The results of this review expand the scope of what is known regarding relationships among supportive interventions for caregivers, activities performed to care for cancer patients, caregiver characteristics, and health outcomes of caregivers. Specific results include (a) updated synthesis of literature associated with variables important to caregiving, (b) attention to interventions designed to support caregivers, (c) classification of specific activities caregivers perform for cancer patients, (d) identification of caregiver characteristics associated with specific care activities, (e) inconsistencies in measurement of care activities, and (f) minimal reporting of outcome variables.

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Attachment, mentalisation and expressed emotion in carers of people with long-term mental health difficulties

Background: Expressed emotion (EE) is a global index of familial emotional climate, which is comprised of emotional over-involvement (EOI) and critical comments (CC)/hostility. Although EE is an established predictor of negative outcomes for both people with long-term mental health difficulties and their family carers, its psychological underpinnings remain relatively poorly understood. This paper examined associations between attachment, mentalisation ability and aspects of EE. Methods: Carers of people with long-term mental health difficulties (n = 106) completed measures of adult attachment (the Experiences in Close Relationships-Short Form questionnaire), mentalisation (the Reading the Mind in the Eyes Test and the Emotional Self-Efficacy Scale) and EE (the Family Questionnaire). Data were analysed using hierarchical multiple regression. Results: Attachment avoidance and facets of mentalisation were directly and uniquely positively associated with CC/hostility, with attachment avoidance and other-directed emotional self-efficacy (one facet of mentalisation) each significantly predicting CC/hostility scores after controlling for the effects of EOI and demographic variables. However, no associations were observed between EOI, attachment anxiety and mentalisation. Furthermore, no indirect effects from attachment to EE via mentalisation was found. Conclusions: Although it would be premature to propose firm clinical implications based on these findings, data indicate that it may be beneficial for clinicians to consider attachment and mentalisation in their conceptualisation of carers’ criticism and hostility. However, further research is needed to clarify the magnitude of these associations and their direction of effect before firm conclusions can be drawn.

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Developing a carer identity and negotiating everyday life through social networking sites: an explorative study on identity constructions in an online Swedish carer community

An overarching reason why carers do not utilise support services is that many people who perform care-giving do not necessarily self-identify as a carer. Understanding the development of carer identities is therefore crucial for the utilisation of different carer-focused health services. This study arose from the European Union-funded INNOVAGE project and aimed to describe how older carers conceptualise and understand their identity as carers on a Swedish online social forum. Theoretically the study adopts a constructionist approach and the method of netnography was applied. The findings reveal that a change in self-perception occurs in the process through which a carer role is acquired. The presence or absence of recognition for the older carers’ capacity, knowledge and life situation is seen as filtered through the needs of the care recipient, making the carer identity into an invisible self. This is not least the case when the identity is constructed in alliance with conceptual and moral obligations found within a marital discourse. Nevertheless, the opportunity for online communication may help to create a virtual space of social recognition through which different experiences attached to caring can be discussed. The significance of online communication is here understood as the possibility it presents for carers to be recognised by other carers. It is a process through which an invisible self can become visible.

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Validation of a model of family caregiver communication types and related caregiver outcomes

Objective: Caring for the family is included as one of the eight domains of quality palliative care, calling attention to the importance of the family system and family communications about cancer during care and treatment of the disease. Previously, a model of family caregiver communication defined four caregiver communication types - Manager, Carrier, Partner, Lone - each with a unique communication pattern. The purpose of the present study was to extend the model of family caregiver communication in cancer care to further understand the impact of family communication burden on caregiving outcomes. Method: This mixed-method study employed fieldnotes from a family caregiver intervention focused on quality of life and self-reported caregiver communication items to identify a specific family caregiver type. Caregiver types were then analyzed using outcome measures on psychological distress, skills preparedness, family inventory of needs, and quality-of-life domains. Results: Corroboration between fieldnotes and self-reported communication for caregivers ([i]n[/i] = 21, 16 women, mean age of 53 years) revealed a definitive classification of the four caregiver types (Manager = 6, Carrier = 5, Partner = 6, Lone = 4). Mean scores on self-reported communication items documented different communication patterns congruent with the theoretical framework of the model. Variation in caregiver outcomes measures confirmed the model of family caregiver communication types. Partner and Lone caregivers reported the lowest psychological distress, with Carrier caregivers feeling least prepared and Manager caregivers reporting the lowest physical quality of life. Significance of results: This study illustrates the impact of family communication on caregiving and increases our knowledge and understanding about the role of communication in caregiver burden. The research provides the first evidence-based validation for a family caregiver communication typology and its relationship to caregiver outcomes. Future research is needed to develop and test interventions that target specific caregiver types. 

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Wife Caregiver Experiences In the Patient with Prostate Cancer at Home

This study explored the caregiving experiences of wives of patients with prostate cancer. Twenty wives revealed those older, educated, or married longer were less burdened by caregiving, but needed more information. Findings contribute new dimensions in caregiving for patients with prostate cancer and their wives.

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Caregivers for older adults: Prevalence, characteristics, and health care utilization and expenditures

The purpose of this study was to provide an overview of caregiver prevalence and characteristics and to estimate the impact of caregiving on health care utilization and expenditures among AARP® Medicare Supplement insureds to inform caregiver intervention strategies. A subgroup with live-in partners was used to investigate the additional effect of live-in health status on caregiver health. Multivariate regression models were utilized to determine caregivers' characteristics and associated impacts on their health care utilization and expenditures. Among respondents (n = 18,928), 14.9% self-identified as caregivers. The strongest characteristics included being younger, healthier, but reporting depression or loneliness. Caregivers of sicker live-ins were female, older and indicated moderate loneliness caregivers of healthier live-ins were younger, healthier, but reported severe loneliness. Caregivers had significantly lower inpatient admissions and medical and prescription drug expenditures. These results indicated an adverse impact on psychological health associated with caregiving but no evidence of a negative impact on physical health. 

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Personality of the caregiver influences the use of strategies to deal with the behavior of persons with dementia

Personality of family caregiver is an important factor influencing the caregiver's burden, depression and distress. We now hypothesized that the personality is associated with specific strategies used by family caregivers to deal with the behavioral and psychological symptoms of demented relatives (BPSD). Participants were 98 consecutive persons with dementia and their family caregivers. Assessments included: Personality (NEO-FFI), Burden (ZBI), Depression (CES-D), Cognitive Function (MMSE), BPSD (NPI), Distress (NPI-D), and an open question to identify the strategies used by caregivers when faced with BPSD. Caregivers used different strategies to cope with their relatives' behavior: avoiding conflict; confronting; reassuring; orienting; responding coercively; distracting; colluding; medicating and restricting the movements. Extraversion was the only dimension of caregiver's personality that determined the use of caregiver strategies to deal with BPSD. Extroverted caregivers used the "confronting" strategy less often. Caregiver's personality should be taken into account when designing adapted intervention programs.

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The nutrition and food-related roles, experiences and support needs of female family carers of malnourished older rehabilitation patients

Background: To improve perceived value of nutrition support and patient outcomes, the present study aimed to determine the nutrition and food‐related roles, experiences and support needs of female family carers of community‐dwelling malnourished older adults admitted to rehabilitation units in rural New South Wales, Australia, both during admission and following discharge. Methods: Four female family carers of malnourished rehabilitation patients aged ≥65 years were interviewed during their care‐recipients’ rehabilitation admission and again at 2 weeks post‐discharge. The semi‐structured interviews were audiotaped, transcribed and analysed reflecting an interpretative phenomenological approach by three researchers. A series of ‘drivers’ relevant to the research question were agreed upon and discussed. Results: Three drivers were identified. ‘Responsibility’ was related to the agency who assumed responsibility for providing nutrition support and understanding family carer obligation to provide nutrition support. ‘Family carer nutrition ethos’ was related to how carer nutrition beliefs, knowledge and values impacted the nutrition support they provided, the high self‐efficacy of family carers and an incongruence with an evidence‐based approach for treating malnutrition. ‘Quality of life’ was related to the carers’ focus upon quality of life as a nutrition strategy and outcome for their care‐recipients, as well as how nutrition support impacted upon carer burden. Conclusions: Rehabilitation units and rehabilitation dietitians should recognise and support family carers of malnourished patients, which may ultimately lead to an improved perceived benefit of care and patient outcomes. Intervention research is required to make strong recommendations for practice.

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Relationships between Caregiving Stress, Depression, and Self-Esteem in Family Caregivers of Adults with a Disability

This study aimed to examine the relationships between caregiving stress, depression, and self-esteem of family caregivers of an adult person with a disability and to identify their effects on their caregiving burden. The study was performed with 108 care providers of adult people with a disability who visited hospital rehabilitation centers. Caregiving stress showed a significant positive correlation with depression and with economic and psychological stress, and it showed a significant negative correlation with self-esteem. When the care provider was aged, female, and without a job and the caregiving cost and time were higher, the caregiving stress was high. When the care provider was female and had a lower income, the depression index was high. When the person with a disability was male and in the forties and the level of disability was higher, the caregiving stress was high. When the disability was related to spinal cord damage, the care provider’s depression index was the highest. To reduce caregiving stress and depression in the family caregivers and to improve their self-esteem, continuous support and help from specialists are necessary. Additionally, a variety of intervention programs need to be designed to motivate them to participate regularly at the community level.

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Patient safety in community dementia services: what can we learn from the experiences of caregivers and healthcare professionals?

Objectives: this study aims to explore how patient safety in community dementia services is understood by caregivers, and healthcare professionals. Methods: cross-sectional analysis of guided one-to-one interviews with 10 caregivers, and 10 healthcare professionals. Results: caregivers and healthcare professionals identified a range of issues including medication errors, mis-communication between professionals, unclear service pathways and the effects of stress on caregivers’ behaviour. Caregivers and professionals differed in their attitudes to balancing safety with patient autonomy and who is responsible for managing safety. Conclusions: this article helps to define the nature of safety issues in the context of community care for people with dementia. In contrast to hospital medicine, where the ideal treatment world is safe with all risks managed or minimised, in dementia some risks are actively taken in the interests of promoting autonomy. Caregivers’ views differ from those of health professionals but both parties see potential for collaborative working to manage risk in this context, balancing the promotion of autonomy with the minimisation of potential harm.

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A qualitative exploration of how Canadian informal caregivers in medical tourism use experiential resources to cope with providing transnational care

Canadians travelling abroad for privately arranged surgeries paid for out‐of‐pocket are engaging in what has come to be known as medical tourism. They are often accompanied by friends or family members, who we call caregiver‐companions. Caregiver‐companions provide care in and across a variety of formal and informal settings, such as in hotels, airplanes and at home. This qualitative study examines the experiences of informal caregivers in medical tourism to learn more about the lived experiences or ‘experiential resources’ they draw upon to cope with providing care and avoiding caregiver burden. The care‐giving literature has demonstrated that such burden can negatively impact caregivers’ well‐being. The unique, transnational context of care‐giving in medical tourism and recent growth in popularity of this practice means that there are few supports or resources currently in place to assist informal caregivers. In this article, we report on an analysis that sought to detail how caregiver‐companions draw upon their previous lived experiences to cope with providing transnational care and to minimise or avoid the onset of caregiver burden. We conducted semi‐structured telephone interviews with 20 Canadians who had accompanied their friends or family members abroad for surgery between September 2013 and January 2014. Thematic analysis revealed the ways that participants had developed practical strategies to deal with the challenges they faced in medical tourism. The interviews revealed three important experiential resources drawn upon by participants: (i) previous experiences of international travel (ii) previous experiences of informal care‐giving and (iii) dimensions of the existing relationship with the care recipient. Differences in access to and use of these experiential resources related to participants’ perspectives on medical tourism and the outcomes of the trip. By identifying the experiential resources drawn upon by informal caregivers in medical tourism, we can more effectively identify supportive interventions.

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The impact of the patient post-intensive care syndrome components upon caregiver burden

Objective: To evaluate patient post-intensive care syndrome (PICS-P) and caregiver burden 3 months after discharge from the Intensive Care Unit (ICU) and determine the impact of different components of PICS-P upon caregiver burden. Design: A prospective observational study was conducted over 26 months (January 2013–February 2015). Setting: Medical-surgical ICU and follow-up consultation in Portugal. Patients or participants: Patients discharged after a minimum of 2 days in the ICU. Caregiver inclusion criteria: not paid, written and spoken Portuguese, and agreement to participate in the study. Main variables of interest: In ICU: Patient gender, age, severity of illness (SAPS II) and length of ICU stay. At 3 months caregiver burden, physical (reduced mobility, weakness acquired in the ICU) and psychological components of PICS (anxiety, depression, post-traumatic stress disorder).  Results: A total of 168 caregivers completed the survey (response rate of 69%). A low degree of overburden was reported by 34.5% of caregivers, while 15.5% showed moderate to high levels of overburden. Patient anxiety and depression 3 months after ICU discharge significantly influenced the presence of caregiver burden (p=0.030 vs p=0.008).  When physical components of PICS-P were evaluated, no influence on caregiver burden was observed. Patient demographics, severity of illness and length of stay also failed to influence caregiver burden. Conclusions: The presence of psychological components of PICS-P 3 months after ICU seems to have a negative impact upon caregiver burden. On the other hand, physical problems showed no important impact upon caregiver overburden.

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The socioeconomic within-gender gap in informal caregiving among middle-aged women: Evidence from a Japanese nationwide survey

Caregiving to older people with needs has been mainly dependent on informal care provision by female caregivers. Compared with the care burden gender gap, the within-gender gap in women's socioeconomic status (SES) has attracted less policy attention. We investigated the association between middle-aged women's SES and the likelihood of being a primary caregiver for elderly informal care, focusing on household income, women's marital status, work status, and educational background under the universal and public system of formal long-term care provision in Japan. We used repeated cross-sectional data from nationally representative household surveys conducted between 2010 and 2013 to obtain a sample of 2399 women aged between 40 and 60 years living in the same household as a care recipient. We conducted multiple logistic regression analysis to obtain odds ratios of being a primary caregiver in the household regressed on women's SES variables, adjusting for the characteristics of care recipients and household composition. The results showed that single women with lower education were likely to be primary caregivers when the care recipients had severe levels of care needs, whereas the association was null in the case of care recipients with milder conditions. The results indicated that women's low education and non-married status were related to a higher likelihood of becoming a primary caregiver of severely disabled elderly for reasons other than lower economic power.To emancipate socioeconomically vulnerable women from the care burden, a broader set of social, economic, and welfare policies are needed.

  • Long-term elderly care has mainly been provided informally by women.
  • Our study focused on unequal burden within women across socioeconomic status (SES).
  • Single women with lower education were at risk of heavier caregiving burdens.
  • A broader policy is needed to reduce SES-bound disparity in women's caregiving.
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Planning for Future Care and the End of Life: A Qualitative Analysis of Gay, Lesbian, and Heterosexual Couples

Two key components of end-of-life planning are (1) informal discussions about future care and other end-of-life preferences and (2) formal planning via living wills and other legal documents. We leverage previous work on the institutional aspects of marriage and on sexual-minority discrimination to theorize why and how heterosexual, gay, and lesbian married couples engage in informal and formal end-of-life planning. We analyze qualitative dyadic in-depth interviews with 45 midlife gay, lesbian, and heterosexual married couples (N = 90 spouses). Findings suggest that same-sex spouses devote considerable attention to informal planning conversations and formal end-of-life plans, while heterosexual spouses report minimal formal or informal planning. The primary reasons same-sex spouses give for making end-of-life preparations are related to the absence of legal protections and concerns about discrimination from families. These findings raise questions about future end-of-life planning for same- and different-sex couples given a rapidly shifting legal and social landscape.

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Factors associated with the burden of family caregivers of patients with mental disorders: a cross-sectional study

Background: Caregivers are responsible for the home care of family members with mental-health disorders often experience changes in their life that can generate stress and burden. The aim of this study was to identify factors associated with the burden of caregivers of family members with mental disorders. Methods: This cross-sectional study was conducted with a non-probability sample of family caregivers, whose patients attended a community services program, the Psychosocial Care Centers, in three cities in the southwest region of Goiás State, Central Brazil. Data collection took place from June 2014 to June 2015. The participants were 281 caregivers who completed a sociodemographic questionnaire and the Zarit Burden Interview (ZBI). Bivariate analyses (t test, analysis of variance, and Pearson correlation) were performed, and variables with values of p < 0.10 and gender were included in a multiple-linear regression model. Values of p < 0.05 were considered significant. Results: The caregivers were mostly female and parents of the patients, were married, with low education, and of low income. The mean ZBI score was 27.66. The factors independently associated with caregivers’ burden were depression, being over 60 years of age, receiving no help with caregiving, recent patient crisis, contact days, and having other family members needing care. Conclusions: This study identified factors that deserve the attention of community services and can guide programs, such as family psycho-education groups, which may help to minimize or prevent the effects of burden on family caregivers responsible for patients’ home care.

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Mental and physical health correlates among family caregivers of patients with newly-diagnosed incurable cancer: a hierarchical linear regression analysis

Purpose: Caregiver, relational, and patient factors have been associated with the health of family members and friends providing care to patients with early-stage cancer. Little research has examined whether findings extend to family caregivers of patients with incurable cancer, who experience unique and substantial caregiving burdens. We examined correlates of mental and physical health among caregivers of patients with newly-diagnosed incurable lung or non-colorectal gastrointestinal cancer. Methods: At baseline for a trial of early palliative care, caregivers of participating patients (N = 275) reported their mental and physical health (Medical Outcome Survey-Short Form-36); patients reported their quality of life (Functional Assessment of Cancer Therapy-General). Analyses used hierarchical linear regression with two-tailed significance tests. Results: Caregivers’ mental health was worse than the U.S. national population (M = 44.31, p < .001), yet their physical health was better (M = 56.20, p < .001). Hierarchical regression analyses testing caregiver, relational, and patient factors simultaneously revealed that younger (B = 0.31, p = .001), spousal caregivers (B = −8.70, p = .003), who cared for patients reporting low emotional well-being (B = 0.51, p = .01) reported worse mental health; older (B = −0.17, p = .01) caregivers with low educational attainment (B = 4.36, p < .001) who cared for patients reporting low social well-being (B = 0.35, p = .05) reported worse physical health. Conclusions: In this large sample of family caregivers of patients with incurable cancer, caregiver demographics, relational factors, and patient-specific factors were all related to caregiver mental health, while caregiver demographics were primarily associated with caregiver physical health. These findings help identify characteristics of family caregivers at highest risk of poor mental and physical health who may benefit from greater supportive care.

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Who Helps? Characteristics and Correlates of Informal Supporters to Adults With Disabilities

This study examined who provides informal (or unpaid) supports to people with intellectual and developmental disabilities (IDD). Participants included 657 adult siblings of people with disabilities who responded to a national survey about informal supports in the areas of recreation, employment, and housing. Results indicated that most people with IDD received informal supports, with parents and sibling respondents most often providing those supports. Support was most commonly received in recreation, as opposed to housing or employment. Asked to list nonfamily informal supporters, respondents often mentioned paid staff and disability organizations. Correlates of total numbers of informal supporters included the individual with disability's functioning level and parents' ability to care for their offspring with disabilities.

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Family and Other Unpaid Caregivers and Older Adults with and without Dementia and Disability

Objectives: To estimate the number of caregivers providing assistance to community‐dwelling older persons with and without dementia and with or without substantial disability; to describe the characteristics of caregivers and care recipients in these groups; to characterize the health‐related tasks that caregivers provide; and to estimate associations between the numbers of tasks and caregiver burden. Design: Nationally representative surveys of caregivers and older adults 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, who were selected on the basis of having assisted with mobility, self‐care, household activities, transportation, or medical tasks. Measurements: Caregiver burden (emotional, physical, financial difficulties) and restrictions on social participation. Results: Although much larger proportions of older adults with dementia and disability (98.4%, n = 1.0 million) and dementia but not disability (95.5%, n = 1.3 million) received caregiving assistance, the largest absolute number of individuals receiving assistance were older adults without dementia or disability (4.0 million). Within each caregiver group, caregivers provided assistance with at least one task across domains of activity of daily living and instrumental activity of daily living–related assistance (>98%), health systems logistics (>70%), and health management (>50%). There was a significant linear association between number of tasks provided and risk of burden in virtually all caregiver groups and domains of assistance. Conclusion: Caregivers of care recipients without dementia or disability accounted for the largest absolute number of helpers. These caregivers, similar to caregivers of care recipients with dementia or disability, delivered a broad spectrum of health‐related tasks and experienced caregiver burden and restrictions on social participation. Findings support the need for interventions that address the needs of caregivers who have not typically been defined as high risk.

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When Employment and Caregiving Collide: Predictors of Labor Force Participation in Prospective and Current Caregivers

Objective: Female caregivers often reduce time spent at work to care for aging family members, which precipitates financial hardship and other adverse outcomes. Little is known about psychosocial correlates of labor force participation (LFP) among female caregivers. The theory of planned behavior posits that social norms, attitudes, and perceived control predict intentions and volitional behaviors, but also that the compelling influence of situational variables undermines enactment of behaviors consistent with one’s intentions. The objective of this study was to employ the theory of planned behavior to examine how psychosocial characteristics predict willingness to reduce LFP among prospective caregivers and actual LFP reduction among active caregivers. Methods: Subsamples of 165 female prospective caregivers and 97 active female caregivers responded to a survey assessing filial beliefs and LFP. Results: Filial obligation and caregiver preparedness predicted intentions to reduce LFP among prospective caregivers, but did not predict actual reduction in LFP in active caregivers. Weekly care demands exceeding 20 hours emerged as the sole correlate of LFP among active caregivers. Conclusions: Domains of the theory of planned behavior predict LFP intentions, but LFP decisions are subject to external pressures, specifically, time demands of the caregiving relationship. Prospective caregivers may benefit from proactive interventions aimed at reducing conflict between situational demands and filial beliefs.

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Financial Care for Older Adults With Dementia: Characteristics of Adult Children Caregivers

This article describes an examination of the sociodemographic characteristics of adult children, particularly Baby Boomer caregivers, who provide financial care to older parents with dementia. The sample including 1,011adult children dementia caregivers aged 50 to 64 years is selected from a nationally representative sample in the 2010 Health and Retirement Study. Exact logistic regression revealed that race, provision of financial assistance to caregiver children, and the number of their children are significantly associated with financial caregiving of parents. Non-White caregivers are more likely to provide financial care to their parents or parents-in-law with dementia; those who have more children and provide financial assistance to their children are less likely to provide financial care to parents with dementia. The current findings present valuable new information on the sociodemographic characteristics of adult children who provide financial assistance to parents with dementia and inform research, programs, and services on dementia caregiving.

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Correlates of caregivers' involvement in the management of older adults' medications

Background Family caregivers are actively involved in medication management, yet little is known about factors associated with caregivers' involvement in this role and how that information can be utilized to engage caregivers in the healthcare system. Objectives To explore factors associated with caregiver involvement in various aspects of older adults' medication management (i.e., ordering, keeping track or ensuring the correct medication is taken at the correct time, and injecting medications). Methods A retrospective analysis of two national surveys, the 2011 National Health and Aging Trends Study and the National Study of Caregiving was performed. Multivariate logistic regression models were used to examine the associations between demographic and caregiving variables with caregiver involvement in three medication management activities. Results Approximately two-thirds of family caregivers (N = 1369) were involved in one or more medication management activities. Factors associated with caregivers' assistance with ordering medications included being female, high frequency of involvement in instrumental activities of daily living (IADLs), involvement in medically-related activities, and caring for an older, less educated, or Hispanic care-recipient and individuals with lung disease or dementia (p < 0.05). Caregiver living arrangement, high frequency of involvement in activities of daily living (ADLs) and IADLs, involvement in medically-related activities along with care-recipient's race/ethnicity and having a dementia diagnosis were all associated with caregiver assistance in keeping track of medications (p < 0.05). Factors associated with assistance in injecting medications were caring for older adults with diabetes or stroke, or being involved in medically-related activities (p < 0.05). Conclusions Different demographic and caregiving factors were associated with caregiver involvement in various medication management activities. Recurring factors included race/ethnicity, certain care-recipient disease states, and caregiver involvement in IADLs and medically-related activities. Healthcare providers can play a proactive role in engaging caregivers in discussion about medication management and these findings can help practitioners more effectively target caregivers for education and support.

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Relationship between caregiving burden and depression in caregivers of individuals with intellectual disabilities in Korea

Background: Individuals with intellectual disabilities (IWID) need intensive long-term care. Consequently, caregivers experience not only economic burdens but also tension, depression, insecurity, etc. Aim: This study aimed to provide basic data and materials for preparing policy alternatives to improve caregiver quality of life of by examining relationships between IWID caregiving burden and depression. Methods: This study involved secondary analysis of data from the 2011 Survey on the Actual Conditions of Individuals with Developmental Disabilities, conducted by the Ministry of Health and Welfare of Korea. Effects of caregivers’ characteristics, caregiving time and cost, and perceptions of time and cost, on depression were analyzed. Results: All components of caregiving burden and depression were significantly higher in the 1st grade, designating the most severe disabilities. Overall, caregiving burden tended to be higher in female caregivers, the unemployed, parents, co-residents, and people with health problems. Caregivers’ characteristics such as spouse relationship, having health problems, and perception of caregiving time and cost were associated with depression. Conclusion: Caregiving burden and depression vary depending on the characteristics of IWID and their caregivers. Services for decreasing caregiving burden may be optimized by focusing on these characteristics.

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Caregiver Burden Among Caregivers of Individuals With Severe Mental Illness: Testing the Moderation and Mediation Models of Resilience

The association between the socio-demographic characteristics of caregivers, such as gender and caregiver burden, is well documented; however, the process underlying this relationship is poorly understood. Based on the stress process model, we designed a cross-sectional study to examine the mediating and moderating effect of resilience on the relationship between gender and caregiver burden. Caregivers of individuals with severe mental illness (n = 201) were recruited in two psychiatric outpatient clinics in Malaysia. The relationship between the gender of the caregiver and caregiver burden was mediated by resilience, thus supporting the stress process model. The findings from the present research contribute to the growing evidence of the interaction between socio-demographic variables of caregivers and resilience, and caregiver burden.

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“Self-Employed” in Caregivinghood: The Contribution of Swedish Informal Caregivers’ Environmental and Contextual Resistance Resources and Deficits

Informal caregivers provide the majority of care for older adults residing in their own homes. Caregivinghood, a new evidence-based concept, describes a time of life when relatives provide care at home. These caregivers need knowledge regarding resources to help them resolve the challenges they encounter. The theoretical framework underpinning this study is Antonovsky’s salutogenic theory of health. This study had two aims: (1) to examine the salutogenic core concepts Generalized and Specific Resistance Resources and Deficits (GRRs/SRRs and GRDs/SRDs) described by Swedish informal caregivers as originating from the environmental and contextual domain of caregivinghood and (2) to discuss how this new knowledge might contribute to the development of health promotion initiatives. This qualitative and theory driven study used inductive and deductive data analysis. Data were gathered through salutogenically guided face-to-face interviews of 32 Swedish informal caregivers. In addition, the study relied on the salutogenic core concepts Specific and Generalized Resistance Resources and Deficits originating from their environment and context. Being in empowering surroundings reflects the presence of usable SRRs/GRRs, whereas Struggling in impeding surroundings reflects the presence of SRDs/GRDs. The results indicate that health-enhancing support has to be individualized (SRRs/SRDs) and generalized (GRRs/GRDs). This study’s salutogenic approach and the methodology enhance the understanding of the mechanisms behind the development of Sense of Coherence. The results contribute both empirically and theoretically to strengthen health promotion research and practice when developing activities and support for caregivers in stressful situations, such as informal caregiving.

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Caring for dependent parents: Altruism, exchange or family norm?

The purpose of this paper is to test alternative models of long-term caring motives. We consider three main motives: pure altruism, exchange and family norm. Our database is the second wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) which allows linking almost perfectly and with complete information children and their parents’ characteristics. Comparing the empirical results to the theoretical models developed, it appears that, depending on the regions analyzed, long-term caring is driven by moderate altruism or by family norm, while Alessie et al. (De Economist 162(2):193–213, 2014), also using SHARE data, stress the importance of exchange motive in intergenerational transfers.

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Influence of personality on depression, burden, and health-related quality of life in family caregivers of persons with dementia

Background: Personality may predispose family caregivers to experience caregiving differently in similar situations and influence the outcomes of caregiving. A limited body of research has examined the role of some personality traits for health-related quality of life (HRQoL) among family caregivers of persons with dementia (PWD) in relation to burden and depression. Methods: Data from a large clinic-based national study in South Korea, the Caregivers of Alzheimer's Disease Research (CARE), were analyzed (N = 476). Path analysis was performed to explore the association between family caregivers’ personality traits and HRQoL. With depression and burden as mediating factors, direct and indirect associations between five personality traits and HRQoL of family caregivers were examined. Results: Results demonstrated the mediating role of caregiver burden and depression in linking two personality traits (neuroticism and extraversion) and HRQoL. Neuroticism and extraversion directly and indirectly influenced the mental HRQoL of caregivers. Neuroticism and extraversion only indirectly influenced their physical HRQoL. Neuroticism increased the caregiver's depression, whereas extraversion decreased it. Neuroticism only was mediated by burden to influence depression and mental and physical HRQoL. Conclusions: Personality traits can influence caregiving outcomes and be viewed as an individual resource of the caregiver. A family caregiver's personality characteristics need to be assessed for tailoring support programs to get the optimal benefits from caregiver interventions.

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Caregiver profiles in dementia related to quality of life, depression and perseverance time in the European Actifcare study: the importance of social health

Objectives: To identify caregiver profiles of persons with mild to moderate dementia and to investigate differences between identified caregiver profiles, using baseline data of the international prospective cohort study Actifcare. 

Methods: A latent class analysis was used to discover different caregiver profiles based on disease related characteristics of 453 persons with dementia and their 453 informal caregivers. These profiles were compared with regard to quality of life (CarerQoL score), depressive symptoms (HADS-D score) and perseverance time. 

Results: A 5-class model was identified, with the best Bayesian Information Criterion value, significant likelihood ratio test (p < 0.001), high entropy score (0.88) and substantive interpretability. The classes could be differentiated on two axes: (i) caregivers' age, relationship with persons with dementia, severity of dementia, and (ii) tendency towards stress and difficulty adapting to stress. Classes showed significant differences with all dependent variables, and were labelled ‘older low strain’, ‘older intermediate strain’, ‘older high strain’, ‘younger low strain’ and ‘younger high strain’. 

Conclusion: Differences exist between types of caregivers that explain variability in quality of life, depressive symptoms and perseverance time. Our findings may give direction for tailored interventions for caregivers of persons with dementia, which may improve social health and reduce health care costs.

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Caregiving and Perceived Generativity: A Positive and Protective Aspect of Providing Care?

Objectives : Although a sizable body of research supports negative psychological consequences of caregiving, less is known about potential psychological benefits. This study aimed to examine whether caregiving was associated with enhanced generativity, or feeling like one makes important contributions to others. An additional aim was to examine the buffering potential of perceived generativity on adverse health outcomes associated with caregiving. Methods : Analyses utilized a subsample of participants (n = 3,815, ages 30–84 years) from the second wave of the National Survey of Midlife Development in the United States (MIDUS). Results : Regression analyses adjusting for sociodemographic factors indicated greater negative affect and depression (p .001) and lower levels of positive affect (p <.01), but higher self-perceptions of generativity (p < .001), in caregivers compared with non-caregivers. This association remained after adjusting for varying caregiving intensities and negative psychological outcomes. Additionally, generativity interacted with depression and negative affect (p values < .05) to lessen the likelihood of health-related cutbacks in work/household productivity among caregivers. Conclusions : Results suggest that greater feelings of generativity may be a positive aspect of caregiving that might help mitigate some of the adverse health and well-being consequences of care. Clinical Implications : Self-perceptions of generativity may help alleviate caregiver burden and explain why some caregivers fare better than others.

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Health-related quality of life in Spanish informal caregivers: gender differences and support received

PURPOSE: We analyzed gender differences in health-related quality of life (HRQoL) and associated factors between informal male and female caregivers in Spain. It is important because of growing rates of dependent people and dwindling public resources. METHODS: We conducted a cross-sectional study of 610 informal caregivers (265 male and 345 female) using an ad hoc structured questionnaire. We performed a descriptive analysis and used multivariate logistic regression to analyze the risk of poor HRQoL, measured with the EQ-5D-5L, according to caregiver sex, sociodemographic characteristics of caregivers and dependents, caregiving circumstances, and support received. RESULTS: Male caregivers were older than women were, and cared more often for their partners. More women used family caregiving allowance (FCA), respite care services, and counseling services, while more men used paid help, home help, and other forms of instrumental help. Women had worse HRQoL than men, particularly in the pain/discomfort dimension. In addition to older age and poor previous health, caring for a partner (OR = 2.379), for a person with major dependence (OR = 1.917), low social class (OR = 1.634), and low social support (OR = 2.311) were factors associated with poor HRQoL. Receiving FCA was associated with better HRQoL (OR = 0.319). Controlling for all these variables, women had 131% more odds than men to have poor HRQoL. CONCLUSIONS: Male and female caregivers in Spain differ in received support and how their HRQoL is affected. These differences are important to design interventions to promote more equitable sharing of care responsibilities and better caregiver health.

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Factors That Influence Self-Reported Health Changes With Caregiving

Objective: This study examined factors associated with the self-reported change in health status as a result of caregiving. Method: Multinomial logistic regression were performed to examine the sociodemographic characteristics, care recipients’ characteristics, and caregiving experiences that affect caregivers’ perceptions of health affected by caregiving using data from 1,087 caregiver respondents in the Caregiving in the U.S. 2015 data set. Data were collected through an online or telephone survey of randomly selected adults in 50 states. Results: Worsened self-reported health with caregiving occurred for caregivers aged 50 to 64, racial/ethnic minorities, those who lived within 20 min of the care recipient’s home, the presence of cognitive deficits, prolonged caregiving, and limited availability of accessible and affordable care services. Importantly, the feeling of choice in taking on care responsibilities was associated with an over fourfold increase in the odds ratio (OR) of better health in response to caregiving (OR = 4.21 confidence interval [CI] = [1.95, 9.08] p < .001). Discussion: Results suggest that improving accessibility of social service resources to assist caregivers in being better supported and having more choice in caregiving responsibilities may foster a positive change in health status with caregiving. 

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The interactive effect of advanced cancer patient and caregiver prognostic understanding on patients' completion of Do Not Resuscitate orders

Objective: Advanced cancer patients' prognostic understanding is associated with completion of Do Not Resuscitate (DNR) orders, which often represent engagement in advance care planning (ACP). Given caregivers' critical roles in patient decision-making about ACP and end-of-life care, caregivers' prognostic understanding may have a large additive effect. The present study examined the association between the main and interactive effects of advanced cancer patient and caregiver prognostic understanding on DNR order completion.; Methods: Data were analyzed from a combined dataset of 2 sequential multi-institutional, longitudinal cohort studies of patients with advanced cancer and their informal caregivers (n = 279 dyads) from 2002 to 2008 (Coping with Cancer 1) and 2010 to 2015 (Coping with Cancer 2). Patients' and caregivers' prognostic understanding regarding life-expectancy (≤ 12 months [prognostic understanding], >12 months [lack of prognostic understanding]) was assessed. DNR order completion was assessed through self-report and confirmed through cross-checking with medical records.; Results: Multivariable modeling of the main and interactive effects revealed the interactive effect, but not the individual effects, of patients' and caregivers' prognostic understanding was significantly associated with higher odds of patients' DNR order completion, adjusting for potential confounds (AOR = 5.89, P = 0.04). For dyads in which both the patient and caregiver had prognostic understanding regarding life expectancy of ≤12 months, 70.7% of patients had completed DNR orders compared with 31.6% to 38.9% in which 1 or both lacked prognostic understanding.; Conclusions: Findings highlight the need for ensuring accurate patient and caregiver prognostic understanding in increasing DNR order completion, which may provide a framework for improving engagement in ACP more broadly.

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Exploring the association between optimism and quality of life among informal caregivers of persons with dementia

Objective: We aimed to analyze the relationship between optimism and quality of life (QoL) among informal caregivers of patients with dementia (PWD).; Design: In this cross-sectional study, a hierarchical multiple linear regression analysis was used to determine the association between optimism and caregiver's QoL after controlling the effect of different covariates, including burden.; Participants: A sample of 130 PWD and their informal caregivers underwent a comprehensive protocol of assessment.; Measurements: Caregivers completed the Battery of Generalized Expectancies of Control Scales, the Zarit Burden Interview, and the World Health Organization Quality of Life-Brief as measure of QoL. Optimism was estimated based on the combination of three expectancies of control, namely, self-efficacy, contingency, and success.; Results: QoL correlated positively with optimism and negatively with burden. Optimism predicted each dimension of QoL, even after controlling for the effect of sociodemographic, care-recipients' clinical covariates, and burden in all models.; Conclusion: Optimism consistently predicted well-being and QoL in informal caregivers of PWD.

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Population Characteristics and Needs of Informal Caregivers Associated With the Risk of Perceiving a High Burden: A Cross-Sectional Study

This study explored the population characteristics and needs of informal caregivers reporting a low or high burden. A cross-sectional study was conducted in the Netherlands to explore the associations between the characteristics and needs of informal caregivers and the burden they perceive and to assess the variance in perceived burdens that is explained by these variables. Three thousand sixty-seven adult informal caregivers and 1936 senior informal caregivers participated, almost 15% of whom perceived a high burden. Particularly caregivers in the 40 to 54 age group perceived a high burden, while caregivers with an intermediate educational level reported a low burden. Higher burden was also reported by caregivers who spent more time on the care provision tasks, had a high level of depressive symptoms, or reported loneliness. The explored variables seem to be important to explain caregiver burden. Longitudinal research is warranted to establish the causal directions of these associations.

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The influence of psychological factors on the burden of caregivers of patients with advanced cancer: Resiliency and caregiver burden

Objective: The aim of our study was to identify the influence of such psychological factors as emotional intelligence and perceived competence on caregiver burden in those who care for patients with advanced cancer.; Method: A total of 50 informal caregivers completed self-report assessments of resilience, perceived competence, emotional regulation, positive aspects of care, emotional distress, and burden. We conducted a quantitative study with a cross-sectional design. Descriptive statistics were obtained. Associations between the different variables were assessed using nonparametric and multiple regression analyses.; Results: Participants were mainly female (88%) and had an average of 20 months of caregiving. Their mean age was 47 years (range = 20-79). More than half of scored high on resilience, positive aspects of caring, and emotional distress, moderately on perceived competence, and low on burden. Most caregivers used cognitive restructuring and social support as coping strategies. Inverse negative correlations were observed among emotional distress, emotional state, and burden with perceived competence and positive aspects of caring (p < 0.05). Significant differences were obtained for emotional distress, cognitive restructuring, and resiliency. Multiple regression analyses demonstrated that perceived competence, resiliency, and positive aspects of caring were the main predictors of burden.; Significance Of Results: Resilience, perceived competence, emotional regulation, and positive aspects of care constitute protective factors against caregiver burden. Taken together, these aspects should be promoted by the healthcare staff in order to facilitate caregiver adaptation and well-being.

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Combining informal care and paid work: The use of work arrangements by working adult-child caregivers in the Netherlands

An increasing number of people combine paid work with the provision of informal care for a loved one. This combination of work and care may cause difficulties, necessitating adaptations at work, i.e. work arrangements. The present study explores what types of work arrangements are used by working caregivers, and which caregiver, care and work characteristics are associated with the use of these work arrangements. Within the Lifelines Informal Care Add-on Study (Lifelines ICAS), data on 965 Dutch informal caregivers in the North of the Netherlands were collected between May 2013 and July 2014 (response rate 48%), and data on 333 working adult-child caregivers (aged 26-68 years, 82% female) were used in this study. A small majority (56%) of the working caregivers used one or more work arrangement(s): taking time off (41%), individual agreements with supervisor (30%), formal care leave arrangement (13%), and reduction in paid work hours (6%). Logistic regression analyses showed that long working hours (OR 1.06, 95% CI 1.01-1.08), and the experience of more health problems (OR 2.54, 95% CI 1.56-4.05) or a disrupted schedule due to caregiving (OR 2.50, 95% CI 1.66-3.78) increased the chance to have used one or more work arrangements. Lower educated working caregivers were less likely to have used a formal care leave arrangement (tertiary vs. primary education OR 2.75, 95% CI 1.13-6.67; tertiary vs. secondary education OR 1.27, 95% CI 1.27-5.09). Policy makers should inform working caregivers about the availability of the different work arrangements, with specific attention for low educated working caregivers. Employers need to consider a more caregiver-friendly policy, as almost half of the working adult-child caregivers did not use any work arrangement.

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Caregiver Self-Esteem as a Predictor of Patient Relationship Satisfaction: A Longitudinal Study

Objective: Longitudinal assessment of patient-caregiver relationships will determine whether caregiver self-esteem determines patient relationship satisfaction at end of life.; Background: Research on close relationships and caregiving supports the idea that informal caregivers' self-esteem may influence their relationships with their terminally ill loved ones. However, this connection has not yet been investigated longitudinally, nor has it been applied specifically to care recipients' relationship satisfaction.; Methods: A sample of 24 caregivers and 24 patients in a hospice home care program were recruited. Multiple patient and caregiver interviews were used to conduct a longitudinal study to measure fluctuations in patient health, changes in patient and caregiver relationship satisfaction, and self-esteem over a three-month period.; Results: An interaction between caregiver self-esteem and patient relationship satisfaction demonstrated the role that self-esteem plays between caregivers and patients enrolled in hospice care. Specifically, for patients with caregivers with low self-esteem, patient relationship satisfaction significantly decreased as the patient's physical health decreased, whereas for patients whose caregivers had high self-esteem, patient relationship satisfaction marginally increased during poorer physical health.; Discussion: High self-esteem may allow caregivers to overcome feelings of burden and maladaptive anticipatory grief to remain satisfied in their relationship with the patient. Caregiver self-esteem appears to play a role in fostering patient relationship satisfaction at the end of life.

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Delay in Seeking Care for Pelvic Floor Disorders Among Caregivers

Objective: In 2015, 44 million adults were informal, unpaid caregivers to an adult or child. Caregiving (CG) is associated with poor self-care, higher depression rates, and decreased quality of life. Our primary objective was to determine if CG is associated with a delay in seeking care for pelvic floor disorders (PFDs).; Methods: We performed a cross-sectional survey of new urogynecology patients from September 2015 to January 2016. Subjects completed the Pelvic Floor Distress Inventory, Pelvic Floor Impact Questionnaire, Patient Reported Outcomes Measurement Information System-Depression surveys, and a survey of care-seeking practices. Caregiving was defined as considering one's self a primary caregiver and assisting with 2 or more activities and instrumental activities of daily living. Multiple logistic regression identified variables associated with delayed care-seeking for 1 or more year.; Results: Two hundred fifty-six patients completed the survey, 82 caregivers (32%) and 174 noncaregivers (NCGs). Sixty-seven percent of caregivers cared for a child and 33% for an adult. There was no difference between caregivers and NCGs in PFD symptom duration, Pelvic Floor Distress Inventory, or Patient Reported Outcomes Measurement Information System depression scores. Caregiving had higher mean Pelvic Floor Impact Questionnaire scores (69.6 vs 51.0, P = 0.02). There was no difference in proportion of patients who delayed care for 1 year or more (42% vs 54%, P = 0.08). A higher proportion of caregivers for an adult waited for 1 year or more (75% vs 42% NCG, P = 0.001). On multiple logistic regression, CG for adults only was associated with delaying care for 1 year or more (adjusted odds ratio, 3.73; confidence interval, 1.33-10.44; P = 0.01).; Conclusions: One third of patients presenting to a urogynecology practice are caregivers. Caregiving for an adult was associated with a delay in seeking care for PFDs.

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Do patients and carers agree on symptom burden in advanced COPD?

Objective: Accurate informal carer assessment of patient symptoms is likely to be valuable for decision making in managing the high symptom burden of COPD in the home setting. Few studies have investigated agreement between patients and carers in COPD. We aimed to assess agreement between patients and carers on symptoms, and factors associated with disagreement in a population-based sample of patients with advanced COPD.; Patients and methods: This was a prospective, cross-sectional analysis of data from 119 advanced COPD patients and their carers. Patients and carers separately rated symptoms on a 4-point scale. Wilcoxon signed-rank tests and weighted Cohen's kappa determined differences in patient and carer scores and patient-carer agreement, respectively. We identified characteristics associated with incongruence using Spearman's rank correlation and Mann-Whitney U tests.; Results: There were no significant differences between group-level patient and carer scores for any symptom. Patient-carer individual-level agreement was moderate for constipation (k=0.423), just below moderate for diarrhea (k=0.393) and fair for depression (k=0.341), fatigue (k=0.294), anxiety (k=0.289) and breathlessness (k=0.210). Estimation of greater patient symptom burden by carers relative to patients themselves was associated with non-spousal patient-carer relationship, non-cohabitating patients and carers, carer symptoms of anxiety and depression and more carer unmet support needs. Greater symptom burden estimation by the patient relative to the carer was associated with younger patients and longer duration of COPD.; Conclusion: Overall, agreement between patients and carers was fair to moderate and was poorer for more subjective symptoms. There is a need to encourage open dialogue between patients and carers to promote shared understanding, help patients express themselves and encourage carers to draw attention to symptoms that patients do not report. The findings suggest a need to screen for and address both the psychological morbidities in patients with advanced COPD and their carers and unmet support needs in carers.

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Fall determinants and home modifications by occupational therapists to prevent falls

Background: Approximately one third of older people over 65 years fall each year. Home modifications may decrease occurrence of falls.; Purpose: This study aims to determine the risk factors of falls for frail older persons and to evaluate the impact of home modifications by an occupational therapist on the occurrence of falls.; Method: We conducted a longitudinal study using a quasiexperimental design to examine occurrence of falls. All participants 65 years of age and older and were assessed at baseline and 6 months after the intervention. Bivariate analysis and logistic regression models were used to study the risk factors of falls and the effect of home modifications on the incidence of falls.; Findings: The main predictors of falls were vision problems, distress of informal caregiver, and insufficient informal support. Home modifications provided by an occupational therapist showed a significant reduction of falls.; Implications: Informal caregivers and their health status had an impact on the fall risk of frail older persons. Home modifications by an occupational therapist reduced the fall risk of frail older persons at 6-months follow-up.

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Comparison of psychosocial and medical characteristics of patients with dementia and their primary informal caregivers between inpatient and day clinic treatment

Background Caregiver burden is one of the most common reasons for hospitalization of patients with dementia. However, changes of location are not recommended for patients with dementia and associated with negative outcomes for patients with dementia. As there is yet a lack of outpatient treatment options, this study explores psychiatric day clinic treatment as option for patients with dementia by comparing characteristics of voluntarily treated patients with dementia and their respective informal caregivers between an inpatient and day clinic setting. Methods A total of 92 patients with dementia (56 inpatient, 36 day clinic) and their informal caregiver provided information on psychosocial and clinical characteristics (Mini-Mental-Status-Test, Neuropsychiatric Inventory, Bayer Activities of Daily Living, Barthel Index, Geriatric Depression Scale-30, Beck's Depression Inventory-II, caregiver burden, Short Form Health Survey-36) at the beginning of treatment and at follow-up (n = 48 patient caregiver dyads) six months after discharge. Results Patients with dementia did not differ in disease severity, neuropsychiatric symptoms, and depression depending on treatment setting. However, the higher the Bayer activities of daily living score, the more likely treatment in day clinic was. Caregivers from patients with dementia in the inpatient setting were younger and reported more financial burden, whereas caregivers from patients with dementia in the day clinic reported lower physical health and more burden due to practical caring responsibilities. Longitudinal data indicated no differences in characteristics of patients with dementia and caregivers depending on treatment setting, despite caregivers from patients in the day clinic reporting more depressive symptoms after six months. Conclusion Day clinic treatment for voluntarily treated patients with dementia might be an alternative to inpatient settings. Patients with dementia do not substantially differ depending on treatment setting, rather characteristics of the caregivers were associated with placement in inpatient or day clinic setting. The needs of caregivers deserve special attention when considering treatment for patients with dementia.

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Psychological Distress Among Caregivers of Individuals With a Diagnosis of Schizophrenia or Schizoaffective Disorder

Objective: The aim was to quantify caregiver distress among informal caregivers of individuals with schizophrenia or schizoaffective disorder and identify its correlates.; Methods: From December 2014 through April 2015, ads posted with mental health advocates and the media recruited informal caregivers, age ≥21 years, to complete an online questionnaire. It included the ten-item Perceived Stress Scale (PSS) (0, no distress; 39, highest) and hypothesized distress correlates in four groups: caregiver and care recipient characteristics; caregiver role demands; caregiver social supports; and caregiver cognitive appraisals of caregiving. Three hypotheses were tested: first, distress is significantly related to variables from each group; second, social supports moderate the effects of role demands on distress; and third, cognitive appraisals mediate the effects of role demands on distress. Hypotheses were tested with multiple linear regression equations and structural equation models (SEMs).; Results: Of 2,338 Web site "hits," 1,708 individuals consented, 1,398 were eligible, and 1,142 had complete data. Most caregivers were women (83%), white (89%), and college educated (59%), with a mean±SD age of 55.6±13.0. Compared with U.S. norms on the PSS (13.4±6.5), mean caregiver distress was high (18.9±7.1). According to SEMs, variables from each group were associated with distress. Contributing most to greater distress were caregiver health problems, providing frequent caregiving assistance, monitoring medication, having limited social support, and appraising caregiving negatively. Cognitive appraisals mediated the effects of demands on distress. Social support had a significant direct effect only.; Conclusions: Caregiver distress was relatively high and related to multiple variables, some of which are potentially modifiable.

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Mild cognitive dysfunction of caregivers and its association with care recipients' end-of-life plans and preferences

Little is known about the association between cognitive dysfunction among informal caregivers and patients' plans and preferences for patients' end of life care. We report on the frequency of cognitive dysfunction among both patients and caregivers and examine associations between caregivers' cognitive screening scores and end of life plans and preferences of patients with advanced cancer. The current sample was derived from a National Cancer Institute- and National Institute of Mental Health-funded study of patients with distant metastasis who had disease progression on at least first-line chemotherapy, and their informal caregivers (n = 550 pairs). The Pfeiffer Short Portable Mental Status, a validated cognitive screen, was administered to patients and caregivers. Patients were interviewed about their end of life plans and preferences. Logistic regression models regressed patients' advance care planning and treatment preferences on caregivers' cognitive screen scores. Patients' cognitive screen scores were included as covariates. Most caregivers (55%) were spouses. Almost 30% of patients scored worse on the cognitive screen than their caregivers and 12% of caregivers scored worse than the patients. For each additional error that caregivers made on the cognitive screen, patients were more likely (AOR = 1.59, p = 0.002) to report that they preferred that everything possible be done to keep them alive and were less likely (AOR = 0.75, p = 0.04) to have a living will or a health care proxy/durable power of attorney. Worse caregiver cognitive screening scores were associated with higher likelihood of patients' reporting that they wanted everything done to save their lives and a lower likelihood of having a living will or other type of advanced care plan. Future studies should confirm these findings in other populations and determine the mechanisms that may underlie the identified relationships.

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Predictors of depression and anxiety among caregivers of hospitalised advanced cancer patients

Introduction: Cancer is a chronic disease that requires long-term treatment and care. Caregivers of cancer patients are at greater risk of developing depression than the general population. The effect of caregivers' cognitive flexibility on depression and anxiety has not been studied. We aimed to investigate the social characteristics, burden level and cognitive flexibility of caregivers of advanced cancer patients, and determine the relationship between these factors and depression and anxiety. We hypothesised that factors such as cognitive flexibility and caregiver burden level significantly predict anxiety and depression.; Methods: The study included 69 primary informal caregivers of cancer patients of Stage 4 severity. Methods utilised included diagnostic semi-structured interviews, Beck Depression Inventory (BDI), Beck Anxiety Inventory (BAI), Zarit Caregiver Burden Inventory and cognitive flexibility inventory.; Results: BDI scores were found to be statistically higher in caregivers who cared for men compared to those who cared for women (20.44 ± 2.06 vs. 13.29 ± 1.81; t = 2.60; p = 0.01). BDI mean scores were statistically lower in caregivers who received help with caregiving compared to those who did not (t = 2.62; p = 0.01). Cognitive flexibility level, burden level, and lack of social support were found to be predictors of caregiver depression.; Conclusion: The study showed that individuals with low cognitive flexibility levels are more likely to have depressive and anxiety symptoms. Based on our findings, we opine that evaluations of caregivers' cognitive strategies and social support are needed to determine the risk of depression in caregivers of cancer patients.

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Level of understanding of Alzheimer disease among caregivers and the general population

Introduction: Understanding of Alzheimer disease is fundamental for early diagnosis and to reduce caregiver burden. The objective of this study is to evaluate the degree of understanding of Alzheimer disease among informal caregivers and different segments of the general population through the Alzheimer's Disease Knowledge Scale.; Patients and Methods: We assessed the knowledge of caregivers in different follow-up periods (less than one year, between 1 and 5 years, and over 5 years since diagnosis) and individuals from the general population. Alzheimer's Disease Knowledge Scale scores were grouped into different items: life impact, risk factors, symptoms, diagnosis, treatment, disease progression, and caregiving.; Results: A total of 419 people (215 caregivers and 204 individuals from the general population) were included in the study. No significant differences were found between groups for overall Alzheimer's Disease Knowledge Scale score (19.1 vs. 18.8, P = .9). There is a scarce knowledge of disease risk factors (49.3%) or the care needed (51.2%), while symptoms (78.6%) and course of the disease (77.2%) were the best understood aspects. Older caregiver age was correlated with worse Alzheimer's Disease Knowledge Scale scores overall and for life impact, symptoms, treatment, and disease progression (P < .05). Time since diagnosis improved caregivers' knowledge of Alzheimer disease symptoms (P = .00) and diagnosis (P = .05).; Conclusion: Assessing the degree of understanding of Alzheimer disease is essential to the development of health education strategies both in the general population and among caregivers.

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Health literacy and its correlates in informal caregivers of adults with memory loss

This secondary analysis examined health literacy among informal caregivers of community-dwelling older adults with memory loss and assessed correlates of caregiver health literacy using the Abilities, Skills and Knowledge Model. Caregiver health literacy (n = 91) was assessed by the Newest Vital Sign. Limited health literacy presented in 38.5% caregivers, with significantly low document literacy. Health literacy was associated bivariately with age, education, global cognitive function, executive function, and working memory (all ps < 0.001), as well as medication knowledge (p = 0.015). Hierarchical regression analyses revealed that older age (p = 0.017), and lower global cognitive function (p < 0.001), working memory (p = 0.001), and academic skills (years of education) (p = 0.004), independently predicted lower health literacy (R2 = 0.54). Medication knowledge, however, was not found to be an independent predictor in the model. Findings suggest limited health literacy is a potential issue among informal caregivers of adults with memory loss. Appropriate assessment and personalized support are needed for informal caregivers who are at high risk for poor health literacy

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The relation between personality, informal caregiving, life satisfaction and health-related quality of life: evidence of a longitudinal study

Purpose: Personality characteristics of the caregiver might play a role in the relation between informal caregiving and health-related quality of life as well as life satisfaction. However, a limited body of research has examined this relation. This study aimed to examine the role personality characteristics of the caregiver might play in the relation between informal caregiving and well-being outcomes using a longitudinal approach.; Methods: Data were derived from the large Panel 'Labour Market and Social Security.' This is an annual household survey, which is conducted by order of the Institute for Employment Research covering persons and households registered as residents of Germany. The SF-12 was used to capture health-related quality of life (covering physical and mental health). A short version of the Big Five Inventory (BFI-K) was used to quantify personality factors. Life satisfaction was measured by a single-item measure. Concentrating on these factors, we used data from the third (2008/2009), sixth (2012), and ninth wave (2015). 34,548 observations were used in fixed effects regressions.; Results: Adjusting for various potential confounders, linear fixed effects regressions showed that the onset of informal caregiving reduced life satisfaction (β = - .14, p < .01), but not physical and mental health. The relation between informal caregiving and life satisfaction was significantly moderated by agreeableness (p < .01).; Conclusions: Findings of the present study emphasized that agreeableness moderates the relationship between informal caregiving and life satisfaction. Measuring personality characteristics of the informal caregiver is important for tailoring interventional strategies in order to increase the benefit of these programs.

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A systematic review on the implementation of eHealth interventions for informal caregivers of people with dementia

Objectives: The objectives were to (1) systematically review the literature on the implementation of eHealth interventions for informal caregivers of people with dementia, and (2) identify determinants of successful implementation.; Methods: Online databases were searched for articles about eHealth interventions for informal caregivers of people with dementia, providing information on their implementation. Articles were independently screened and inductively analyzed using qualitative analysis. The analysis was mapped onto the Consolidated Framework for Implementation Research (CFIR; Damschroder et al., 2009).; Findings: 46 articles containing 204 statements on implementation were included. The statements on implementation were grouped into four categories: Determinants associated with the eHealth application, informal caregiver, implementing organization, or wider context. Mapping of the determinants on the CFIR revealed that studies have focused mostly on characteristics of the intervention and informal caregiver. Limited attention has been paid to organizational determinants and the wider context.; Conclusions: Despite prolific effectiveness and efficacy research on eHealth interventions for caregivers of people with dementia, there is a critical dearth of implementation research. Furthermore, there is a mismatch between eHealth intervention research and implementation frameworks, especially concerning organizational factors and wider context. This review underscores the importance of future implementation research in bridging the gap between research and practice.

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The informal caregiver's lived experience of being present with a patient who receives a diagnosis of dementia: A phenomenological inquiry

This article describes the lived experience of informal caregivers who accompany loved ones as the loved ones receive a diagnosis of dementia. Each of 12 informal caregivers participated in a face-to-face interview that was audiotaped and transcribed. Analysis of the interview text revealed seven constituents as central to the general structure of this experience: (a) having anticipated the diagnosis; (b) feeling relief; (c) feeling the gravitas of the words; (d) grieving the loss; (e) watching for the patient's reaction; (f) accepting the diagnosis and taking action; and (g) committing to care. Implications for healthcare providers are discussed, with an emphasis on the need to be sensitive to the experience of both patients and informal caregivers when disclosing a diagnosis of dementia.

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Factors associated with symptoms of depression among informal caregivers of people with systemic sclerosis: a cross-sectional study

Purpose: Our study aimed to identify caregiver characteristics (gender, age, occupational status, educational attainment, relation to care recipient), care recipient characteristics (age, disease subtype), and caregiving factors (hours of care, perceived caregiving burden) associated with symptoms of depression among informal caregivers of persons with systemic sclerosis (also known scleroderma). as Materials and methods: A questionnaire was developed and administered online from December 2016 to June 2017 to informal caregivers of people with scleroderma, including the Patient Health Questionnaire-9 to assess depressive symptoms. Multiple linear regression was used to identify factors associated with depressive symptoms.; Results: Caregivers (n = 202) were 60.9% male. Average age was 57.2 years (standard deviation = 14.4 years). Most caregivers were partners (72.3%), children (11.9%), or parents (7.4%), of care recipients. Self-reported caregiving burden (standardized regression coefficient [Formula: see text] = 0.54, p < 0.001) and hours of care per week ([Formula: see text] = 0.17, p = 0.005) were significantly associated with greater symptoms of depression.; Conclusions: Depressive symptoms were primarily associated with caregiving burden among a sample of scleroderma caregivers. There is need to develop interventions targeting caregivers in scleroderma. Rehabilitation professionals should consider the specific needs of scleroderma caregivers and should provide or refer to support services as appropriate. Implications for Rehabilitation Most people diagnosed with scleroderma are cared for by an informal caregiver and the majority of these caregivers experience mild symptoms of depression. For caregivers that experience moderate to severe symptoms of depression, the ability to provide care to a loved one with scleroderma may be more difficult. Rehabilitation professionals should be aware of the burden faced by caregivers of persons with scleroderma and provide support services or referrals as appropriate.

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An integrative review of information and communication technology based support interventions for carers of home dwelling older people

Background: A growing number of studies of informal carers of older people reveal positive results concerning support via Information and Communication Technologies (ICT). Systematic examination of factors that have a potential impact on carer outcomes are needed to inform future research.; Objective: To explore studies concerning ICT support of adult carers of older people and to identify study characteristics that have a potential impact on carer outcomes.; Methods: This integrative review includes 123 studies published since 2005. Fundamental questions for designing sensitive support interventions; 'who, what, and how' were applied to a synthesis of the results.; Results: Identified characteristics from the studies responding to the who question included variables of the carers, such as their relationship with the care recipient or their ethnicity. Characteristics related to the what question related to the types of interventions, and the how question concerned the different services or programs offered, the idiosyncratic needs of the carers, and the types of technologies used.; Conclusion: Results are discussed according to micro, meso and macro levels of analysis. This extensive review can inform future studies and highlight the evidence in the area for decision makers, practitioners and/or NGOs working with innovative forms of support for carers of older people.

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Informal care: choice or constraint?

Background: 'Choice' is increasingly pursued as a goal of social policy. However, the degree to which choice is exercised when entering an informal caring role is open to debate.; Aim: In this study, we examined the degree of choice and constraint in entering a caring role, and the relationship between choice and carers' well-being.; Methods: Data were derived from 1100 responses to a postal survey conducted in a British city. Statistical tests of association and multivariable regression modelling were applied to study the factors associated with choice in entering a caring role and the association that choice in entering a caring role had with carers' well-being.; Results: We found that informal care was generally perceived to be a free choice, albeit in most cases, a choice was also constrained by duty, financial or social resources. Having a sense of free choice in entering care was strongly and positively associated with the carer's well-being.; Conclusion: The study findings are consistent with a view that enabling individuals to have more choice in their caring roles may be beneficial.

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A longitudinal study looking at and beyond care recipient health as a predictor of long term care home admission

Background: The unpaid care provided by informal caregivers allows care recipients to live longer in their homes, which often results in fewer unnecessary long term care home (LTCH) admissions. Although the relationship between care recipient's health characteristics and institutionalization is well known, the influence of caregiver distress and caregiving coresidence and relationship on this outcome is less clear. This study examines the association of care recipient care needs, caregiver distress and caregiving coresidence and relationship with care recipient long term care home admission.; Methods: A total of 94,957 resident assessment instruments-home care (RAI-HC), completed between April 01st 2013 and April 01st, 2014 as part of a clinical practice by 14 Local Health Integration Networks (LHINs) in Ontario, Canada, were linked to LTCH admissions within 1 year after completion of the first RAI-HC assessment. Cox models were used to examine whether care recipient health care needs, caregiver distress and caregiving characteristics such as coresidence and relationship were associated with LTCH admission. Age, marital status and gender of the care recipient were included as covariates in the model.; Results: Care recipient health care needs and age were the strongest predictors of LTCH admission followed by caregiver distress and caregiving coresidence and relationship. Care recipient marital status was not significant in the survival model. Interestingly, care recipients who were cared for by a coresiding adult child caregiver were less likely to be admitted to a LTCH than care recipients cared for by a spouse caregiver coresiding or not with care recipient. Hazard rates (HR) of admission for care recipients cared for by caregivers coresiding and with other type of relationship with care recipient were not significantly different than HR of care recipients cared for by coresiding child caregivers.; Conclusions: These results emphasize the influence of caregiver distress in LTCH admission and highlight the impact of caregiving relationship and coresidence on this outcome. Policy and decision makers should consider these findings when developing and evaluating interventions aiming to avoid LTCH admissions. Moreover, caregiving coresidence and relationship should be explored in future studies with similar aims, as this information has been neglected in past research.;

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High perceived caregiver burden for relatives of patients following hip fracture surgery

Purpose: To determine the profile of the main informal caregivers, the evolution of the caregiver burden, and the influencing factors of caregiver burden at 1-year after hip fracture surgery.; Methods: In this prospective cohort study, a total of 172 informal caregivers of patients were interviewed at four points during 1 year following hip fracture surgery in a regional hospital in southern Spain. The perceived caregiver burden was assessed using the Caregiver Strain Index (0-13 points).; Results: The mean (Standard Deviation) age of the 172 caregivers was 56 (13) years, of which 133 (77%) were woman and 94 (55%) were daughters of the patient. Seventy-nine of the 172 (46%) caregivers perceived a high level of burden (≥ 7 points on the Caregiver Strain Index) at the hospital. The corresponding numbers with perceived high level of burden at 1-month, 3-months, and 1-year were 87 (50%), 61 (36%), and 45 (26%) caregivers. A low pre-fracture functional status, post-operative complications, older age of patients, and younger age of caregivers negatively influence caregiver burden at 1-year.; Conclusions: The main caregiver is predominantly female and is most often the daughter of the patient. New treatment strategies such as the support and training of the caregivers in patient handling during hospital stay could be carried out to reduce caregiver burden. Implications for rehabilitation The main caregiver of a hip fracture patient is usually a woman who is the daughter of the patient, and reducing her burden of care should be included as one of the objectives of rehabilitation treatment. The caregivers of hip fracture patients must be considered as part of the treatment during the patient's recovery period, and patient handling training should be provided to the caregivers of hip fracture patients during the hospital stay to prepare the process of going back home. The caregivers of older patients, those with a low pre-fracture functional level, and of those who suffered post-operative complications, should receive more attention prior to hospital discharge and receive more assistance at home to reduce caregiver burden.

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The effects of informal carers' characteristics on their information needs: The information needs state approach

There has been little research that provides a comprehensive account of the nature and aspects of information needs of informal carers. The authors have previously developed and validated a framework that accounts for major underlying states of information need. This paper aims to apply this framework to explore whether there are common demographic and socioeconomic characteristics that affect the information needs states of carers. A questionnaire about the information needs states was completed by 198 carers above 18 years old. We use statistical methods to look for similarities and differences in respondents' information needs states, in terms of the demographic and socioeconomic variables. At least one information needs state varies among carers, in terms of seven demographic and socioeconomic variables: the age of the patient(s) that they are caring for; the condition(s) of the patient(s) that they are caring for; the number of patients that they are caring for; their length of time as a carer; their gender; the country that they live in; and the population of the area that they live in. The findings demonstrate the utility of the information needs state framework. We outline some practical implications of the framework.

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Young carers and young adult carers in Switzerland: Caring roles, ways into care and the meaning of communication

Although there is already general recognition of the fact that many relatives provide unpaid care for family members, there is still little awareness that children, adolescents and young adults under 25 also provide such care. Until recently, the situation of young carers and young adult carers, as those young persons are referred to in international research, has not been in the focus of professionals, research and the public in Switzerland. Between September 2015 and October 2016, 30 interviews in seven cantons were conducted with 16 young carers aged 10–17 and 14 young adult carers aged 18–25. The interviews were recorded, transcribed and analysed following a grounded theory approach. This paper now presents the first qualitative data on Swiss young carers and young adult carers. It explores their sociodemographic backgrounds, the nature and intensity of caring tasks they carry out, their pathways into caring as well as the role of communication with family members, extended family, professionals and peers. Our findings provide a first insight in the lives of young carers and young adult carers in Switzerland and illustrate, as well, the challenges they face.

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Attitudes toward early palliative care in cancer patients and caregivers: a Korean nationwide survey

Integrated early palliative care (EPC) improves quality of life and reduces psychological distress in adult patients with cancer and caregivers, but attitudes toward EPC have been poorly studied. We aimed to investigate attitudes toward EPC in a nationwide survey of patients with cancer and caregivers. From July to October 2016, we administered nationwide questionnaires examining attitudes toward EPC in patients with cancer (<italic>n</italic> = 1001) and their families (<italic>n</italic> = 1006) from 12 Korean hospitals. When an individual considered EPC unnecessary, the reasons were collected and analyzed. Factors associated with perception of EPC were examined. A majority of patients (84.5%) and caregivers (89.5%) had positive attitudes toward EPC. The most common reasons for deeming EPC unnecessary were that EPC may be an obstacle to cancer treatment (patients: 37%; caregivers: 23%; respectively) or that they were not sure if EPC is beneficial (patients: 21%; caregivers: 24%; respectively). Financial burden as a reason was more evident in caregivers (23%) than in patients (17%). Male gender, age <50, early stage, intensive care unit admission, and not believing that dying people should prepare to practice charity were associated with patients’ negative attitudes. In caregivers, opposition to EPC was associated with not thinking death should be feared, not thinking people should be remembered, and lower educational level. Our findings showed that significant numbers of patients with advanced cancer and family caregivers showed positive attitudes toward EPC. However, more than 10% of participants did not consider EPC necessary. Physicians’ communication with patients and caregivers and financial support could help overcome the barriers of EPC.

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Psychometric testing of the Family‐Carer Diabetes Management Self‐Efficacy Scale

The aim of this study was to develop and test the construct and content validity, internal consistency of the Family‐Carer Diabetes Management Self‐Efficacy Scale (F‐DMSES). A sample of 70 Thai individuals who cared for those living with type 2 diabetes mellitus (T2DM) in a rural community in Thailand was included in the study. Data were collected by a questionnaire survey in January 2014. The F‐DMSES was initially derived from the DMSES, with subsequent forward and backward translations from and to English and Thai languages. The psychometric properties (content, construct and internal consistency) of the Thai version were explored using the Content Validity Index approach, exploratory factor analysis and Cronbach's alpha test. The F‐DMSES initially designed with 20 items was reduced to 14 items within four factors (general diet and blood glucose monitoring, medications and complications, diet in differing situations, and weight control and physical activities), and explained 72.2% of the total variance in overarching construct. Internal consistency was supported (α = 0.89). The F‐DMSES was also able to measure change over time following an intervention, with an effect size of 0.9. The F‐DMSES is a valid and reliable self‐administered instrument that measures the diabetes management self‐efficacy of family‐carers of individuals with T2DM. This instrument can be used in practice and clinical trials to assess the impact of family‐carers on the health outcomes of individuals with T2DM. 

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Does vigilance in decision-making matter for dementia family caregivers?

Objectives: Family responsibilities and social expectations often prompt conflict in caregivers' decision-making processes. Janis and Mann's (1977) conflict model describes vigilance as high-quality decision-making resulting in optimal outcomes. The purpose of our research was threefold: (1) to describe decision styles in a population of family caregivers of persons with dementia;(2) to examine the socio-economic characteristics associated with caregivers who are more likely to be vigilant decision-makers;and (3) to assess differences in caregiving experiences between vigilant and non-vigilant caregivers. Method: Our analysis was based on 639 survey respondents recruited from a university-affiliated memory disorders clinic. Results: Our typical caregiver was Caucasian non-Hispanic, was currently married, and had two children. Approximately half of our sample used a 'pure vigilant' decision style. Vigilance was associated with more positive and fewer negative caregiving outcomes. Conclusion: Supporting caregivers to become vigilant decision-makers is a functionally viable intervention that could significantly improve the caregiving experience. 

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Maneuvering Together, Apart, and at Odds: Residents' Care Convoys in Assisted Living

Objectives: Frail and disabled individuals such as assisted living residents are embedded in "care convoys" comprised of paid and unpaid caregivers. We sought to learn how care convoys are configured and function in assisted living and understand how and why they vary and with what resident and caregiver outcomes. Method: We analyzed data from a qualitative study involving formal in-depth interviews, participant observation and informal interviewing, and record review. We prospectively studied 28 residents and 114 care convoy members drawn from four diverse assisted living communities over 2 years. Results: Care convoys involved family and friends who operated individually or shared responsibility, assisted living staff, and multiple external care workers. Residents and convoy members engaged in processes of "maneuvering together, apart, and at odds" as they negotiated the care landscape routinely and during health crises. Based on consensus levels, and the quality of collaboration and communication, we identified three main convoy types: cohesive, fragmented, and discordant. Discussion: Care convoys clearly shape care experiences and outcomes. Identifying strategies for establishing effective communication and collaboration practices and promoting convoy member consensus, particularly over time, is essential to the creation and maintenance of successful and supportive care partnerships. 

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The complex relationship between household income of family caregivers, access to palliative care services and place of death: A national household population survey

Background: Previous work shows that more affluent patients with cancer are more likely to die at home, whereas those dying from non-cancer conditions are more likely to die in hospital. Family caregivers are an important factor in determining place of death. Aim: To investigate associations between family caregivers' household income, patients' access to specialist palliative care and place of patients' death, by level of personal end-of-life care. Design: A cross-sectional community household population survey. Setting and participants: Respondents to the Household Survey for England. Results: One-third of 1265 bereaved respondents had provided personal end-of-life care (caregivers) (30%). Just over half (55%) of decedents accessed palliative care services and 15% died in a hospice. Place of death and access to palliative care were strongly related (p < 0.001). Palliative care services reduced the proportion of deaths in hospital (p < 0.001), and decedents accessing palliative care were more likely to die at home than those who did not (p < 0.001). Respondents' income was not associated with palliative care access (p = 0.233). Overall, respondents' income and home death were not related (p = 0.106), but decedents with caregivers in the highest income group were least likely to die at home (p = 0.069). Conclusion: For people who had someone close to them die, decedents' access to palliative care services was associated with fewer deaths in hospital and more home deaths. Respondents' income was unrelated to care recipients' place of death when adjusted for palliative care access. When only caregivers were considered, decedents with caregivers from higher income quartiles were the least likely to die at home. Family caregivers from higher income brackets are likely to be powerful patient advocates. Caregiver information needs must be addressed especially with regard to stage of disease, aim of care and appropriate interventions at the end of life. 

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Characteristics of informal caregivers who provide transportation assistance to older adults

The study aim was to gain a better understanding of the characteristics of informal caregivers who provide transportation assistance and to explore the types and frequency of this assistance. A telephone survey was administered to a representative sample of 268 informal caregivers (age 45–80) who provide transportation assistance to older adults (age 70 and older) in Michigan. Responses were analyzed overall and by the caregiver sex and care recipient age. Informal transportation caregivers were: most often women; on average 61 years old; generally college educated; employed full- or part-time jobs; relatively healthy; providing care to a parent/family member 1–4 times per week, living close to the care recipient; and providing assistance by giving rides. Less than one-half of caregivers sought information to help them provide assistance. No significant burden was reported and there were few differences by sex of the caregiver of the age group of the care recipient. 

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What Factors Predict Family Caregivers' Attendance at Dementia Cafés?

Background: Dementia Cafés are community support groups which provide post-diagnostic support for families affected by dementia. However, little is known about the characteristics of caregivers who attend Cafés. Objectives: To describe the demographic and psychosocial characteristics of caregivers who attend Dementia Cafés, and to identify which of those factors may influence the likelihood of family caregivers attending Dementia Cafés. Methods: A cross-sectional study on caregivers (n = 80; July 2016- July 2017). Resilience (Brief Resilient Coping Scale), Subjective Wellbeing (Personal Wellbeing Index), and Social Support (MOS-Social Support Survey) were measured. Café attendees and non-attendees were compared in regards to demographic characteristics (Chi-Square tests), resilience, subjective wellbeing and social support (independent t-tests). Bivariate and multivariate regression analyses were run to detect associations between predictor variables and café attendance. Results: Caregivers who attended Cafés reported higher resilience (OR: 1.26; 95% CI 1.10-1.45; p = 0.001) and subjective wellbeing (OR: 1.63; 95% CI 1.24-2.142; p = 0.001); no significant difference in social support was detected. Female caregivers were more likely to attend a Café (OR: 3.23; 95% CI 1.14-9.10; p = 0.03). However, only higher subjective wellbeing (OR: 1.63; 95% CI 1.10-24.2; p = 0.02) and fewer years formal education (OR: 4.99; 95% CI 1.12-21.36; p = 0.03) predicted attendance at a café. Conclusion: Dementia Cafés may bring about benefits in resilience and subjective wellbeing, or may be best suited to those with higher resilience and wellbeing. Cafes are not being accessed by all caregiver groups. Alternative models of post-diagnostic support should be considered to increase equity of care. 

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Informal Caregiver Stress

Research shows the stressful demands of caregiving to older family members can have negative effects on physical health. The effects on physical health may include: immune system functioning, heart rate reactivity, raised blood pressure levels, and increased risk of mortality among older spousal caregivers. Gender differences in caregivers' outcomes exist because, compared with male caregivers, female caregivers face higher levels of caregiving stressors, have fewer social resources, and report lower levels of psychological and physical health. Gender and education effects on health show that female caregivers experience more stress and have poorer health than male caregivers. African-Americans, unlike White caregivers, are more likely to provide care in collectivist versus individualistic caregiving systems. In the same notion, African-American caregivers are less likely to utilize formal support systems and African-Americans expressed stronger cultural reasons for providing care. 

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Illustration of informal caregiving within Saudi society: demography, scope of care and enabling arrangements

Although informal caregiving is a vital element in the process of supporting individuals with dependency, it is unrecognised most of the time, particularly by caregivers themselves. In Saudi Arabia, little attention has been devoted to informal caregivers; therefore, scarce coverage of this topic is obvious within the literature. This descriptive cross-sectional study was carried to explore informal caregiving within Saudi society by (i) describing informal caregivers and their care recipients and (ii) measuring the scope of care and enabling arrangements in the lives of informal caregivers. Numerical measures of frequency distribution were used to describe the participants and the correlate of demography among 341 female primary caregivers of the elderly (40%), individuals with disabilities (10%) or/and children aged five or younger (51%). Inferential statistics were used to test for significant associations among study variables. The majority of the participants were married with children and were middle-aged. However, the majority of care recipients were living with their caregivers; in addition, they were primarily females cared for by a mother or, less often, by a daughter (in-law). Enabling arrangements were on a moderate level, mainly in healthcare access, financial resources and family support, with lower signs detected in the quality of sleep indicator. These arrangements were significantly associated with caregiver age, education, career status and source of assistance. In conclusion, the statistics revealed by this survey indicated certain challenges that have been encountered by informal caregivers, primarily involving financial and social support. More coverage within the formal system of childcare must be provided to facilitate healthier childhoods. The long-term needs of individuals with dependency must be considered in the planning process of healthcare services, as well, remembering the needs and expectations of informal caregivers.

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The relationship between psychiatric patients' caregiver burden and anger expression styles

Aims and Objectives: To examine the relationship between psychiatric patients' caregiver burden and anger expression styles.; Background: In the caregiving process, when coping with problems, caregivers may exhibit emotional and behavioural responses, which can produce distressful results. One of these responses is angry. Examining the relationship between psychiatric patients' caregiver burden and caregivers' anger expression styles is necessary for quality of care.; Design: A descriptive and relational study.; Methods: The sample for study included 60 family caregivers who were stayed with patient in psychiatry clinic during the treatment of inpatient setting of a university hospital. Data for the study were collected using the Caregiver Burden Inventory and the Trait Anger and Anger Expression Scale. The analysis of variance, Mann-Whitney U test, Kruskal-Wallis and Pearson correlation analysis were used.; Results: The caregivers' Caregiver Burden Inventory score was found to be 24.60 ± 1.57. Gender, working status, level of intimacy with patient, status of whether or not caregiver was living with patient and status of whether or not caregiver experienced difficulties in providing care had a significant effect on the Caregiver Burden Inventory scale as a whole, as well as its subscales. This study found a positive relationship between caregiver burden and caregivers' anger expression styles (p < .05, p < .01).; Conclusion: The total Caregiver Burden Inventory mean score of caregivers was concluded to be low, with some introductory characteristics and anger expression styles having an impact on the burden experienced by caregivers.; Relevance To Clinical Practice: Knowing the anger expression styles of caregivers is important for reducing caregiver burden and improving quality of care.; © 2017 John Wiley & Sons Ltd.

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Expressed emotion and the course of schizophrenia in Pakistan

Purpose: Aim of the study is to evaluate the predictive power of Expressed Emotion in Schizophrenia relapse in Pakistan. Method: A longitudinal study was conducted comprising 53 in-patients' sample diagnosed with Schizophrenia and their 101 key carers. Participants fulfilled DSM-IV-TR criteria for Schizophrenia based on Structural Clinical Interview for the DSM-IV diagnosis. Symptomatic status was measured through Brief Psychiatric Rating Scales-Expanded (BPRS-E). Caregivers' level of EE was assessed through Camberwell Family Interview (CFI). Patients were followed up for 9 months after hospital discharge.Results: Relapse rate for patients with high-EE household was 72% as compared with 36% in the low-EE household. Logistic Regression showed a positive relationship between high-EE and relapse (CI 0.06-0.80; p < 0.05). Both hostility and critical comments emerged as significant predictors of relapse. The odds ratio showed that a one unit increase in caregivers' score on the CCs and hostility scales were associated with a 1.29 (CI 1.06-1.56; p < 0.05) and 1.89 (CI 1.14-3.13; p < 0.05) times increased rate of relapse, respectively. Conversely, a non-significant relationship was observed between EOI and relapse. Conclusions: The findings from this study confirmed the validity of EE construct in predicting schizophrenia relapse in a Pakistani sample. However, medication compliance has not been experimentally controlled and that is one of the limitations of the study

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Correlates of Perceived Social Support in Chinese Adult Child Caregivers of Parent Stroke Survivors

Background: Prevalence of stroke and traditional filial responsibility involve adult children in caregiving to their parent stroke survivors in China. Support resources are insufficient because of the shrinking size of family and the underdeveloped support system. Purpose: The aim of this study was to identify the correlates of perceived social support among adult child caregivers of parent stroke survivors in China. Methods: A cross-sectional correlational design was used in this study. A nonproportional quota sample of 126 adult child caregivers was recruited from Zhejiang Province, China. Data were collected at either the hospital stroke units or the respondents' homes using structured questionnaires of caregiving dyadic demographics and caregiving characteristics, 14-item Activities of Daily Living, 15-item Mutuality Scale, and 12-item Multidimensional Scale of Perceived Social Support. SPSS 17.0 was used for analysis. Results: Caregivers' mutuality, education, full employment or being retired, monthly income, having a co-carer, and having a father as the care receiver were significantly positively associated with caregivers' perceived social support. However, mutuality was not significantly associated with caregivers' perceived social support after the other factors were adjusted. Conclusions/Implications for Practice: Adult child caregivers with higher levels of mutuality, education, or monthly income; who are fully employed or are retired; who have a co-carer; or who are caring for a father perceived more social support. Nursing strategies and social policies need to be directed to enhance caregiver mutuality and support caregiving efforts.

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The influence of family adaptability and cohesion on anxiety and depression of terminally ill cancer patients

Purpose: This study investigated the effect of family members on terminally ill cancer patients by measuring the relationship of the presence of the family caregivers, visiting time by family and friends, and family adaptability and cohesion with patient's anxiety and depression.; Methods: From June, 2016 to March, 2017, 100 terminally ill cancer patients who were admitted to a palliative care unit in Seoul, South Korea, were surveyed, and their medical records were reviewed. The Korean version of the Family Adaptability and Cohesion Evaluation Scales III and Hospital Anxiety-Depression Scale was used. Chi-square and multiple logistic regression analyses were used.; Results: The results of the chi-square analysis showed that the presence of family caregivers and family visit times did not have statistically significant effects on anxiety and depression in terminally ill cancer patients. In multiple logistic regression, when adjusted for age, sex, ECOG PS, and the monthly average income, the odds ratios (ORs) of the low family adaptability to anxiety and depression were 2.4 (1.03-5.83) and 5.4 (1.10-26.87), respectively. The OR of low family cohesion for depression was 5.4 (1.10-27.20) when adjusted for age, sex, ECOG PS, and monthly average household income.; Conclusions: A higher family adaptability resulted in a lower degree of anxiety and depression in terminally ill cancer patients. The higher the family cohesion, the lower the degree of depression in the patient. The presence of the family caregiver and the visiting time by family and friends did not affect the patient's anxiety and depression.

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Relationship Quality and Distress in Caregivers of Persons With Dementia: A Cross-Sectional Study

This cross-sectional study aimed to investigate the relationship between caregivers and care receivers, defined as home-dwelling family members with dementia. We used a self-rating questionnaire, the Felt Expressed Emotion Rating Scale (FEERS; 6 simple questions), to measure caregiver perceptions of the care receiver's criticisms (CCs) and emotional overinvolvement (EOI) toward the caregiver. We performed factor analyses to rank single items on the FEERS pertaining to CC and EOI. We included 208 caregiver/care receiver pairs. Logistic regression analyses tested associations between FEERS items and caregiver and care receiver variables. The main contributors to caregiver perceptions of CC were the caregiver's own distress and the amount of time spent with the care receiver. Socially distressed caregivers perceived the care receiver as emotionally overinvolved. When offering a psychosocial intervention, a tailored program should target the caregiver's perceived relationship with the family member and the caregiver's distress. The program should also endeavor to give the caretaker more opportunities for leisure time.

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Profiles of Alzheimer's caregivers in Spain: social, educational and laboral characteristics

Background A person suffering from dementia needs increasing help from another person, who, in most cases, is a female family member. Times are changing and this traditional role can no longer be maintained. Aim The aim of this research was mainly centred on ascertaining the profile of caregivers and to find out how determinants such as age, sex and educational level and living conditions led people to assume that role. Methods A survey was designed and applied to 925 caregivers (778 of which were analysed) with the collaboration of the Alzheimer's Associations of Andalucía (Spain). Associations gave their ethical approbation for this research prior to the beginning and they informed their members. The participation was entirely voluntary, and caregivers were given the option to withdraw consent. Results Women are the main caregivers in any kind of profile. Males become carers if they are old and the partner of a patient. Males use more external services. Cohabiting and working outside the home increase the use of external support services, and having a higher level of education increases the use of nursing homes. Younger caregivers perceive more intense socio-economic consequences than the general profile. Conclusions Being a caregiver implies limitations to entering the job market and for job promotion. There is a generational gap in the caregiver profile, and more and new support services will be needed. Policymakers should take those into account. 

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Profiles of Alzheimer's caregivers in Spain: social, educational and laboral characteristics

Background A person suffering from dementia needs increasing help from another person, who, in most cases, is a female family member. Times are changing and this traditional role can no longer be maintained. Aim The aim of this research was mainly centred on ascertaining the profile of caregivers and to find out how determinants such as age, sex and educational level and living conditions led people to assume that role. Methods A survey was designed and applied to 925 caregivers (778 of which were analysed) with the collaboration of the Alzheimer's Associations of Andalucía (Spain). Associations gave their ethical approbation for this research prior to the beginning and they informed their members. The participation was entirely voluntary, and caregivers were given the option to withdraw consent. Results Women are the main caregivers in any kind of profile. Males become carers if they are old and the partner of a patient. Males use more external services. Cohabiting and working outside the home increase the use of external support services, and having a higher level of education increases the use of nursing homes. Younger caregivers perceive more intense socio-economic consequences than the general profile. Conclusions Being a caregiver implies limitations to entering the job market and for job promotion. There is a generational gap in the caregiver profile, and more and new support services will be needed. Policymakers should take those into account. 

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End-of-life care of elderly patients with dementia: A cross-sectional study of family carer decision-making

Background: Dementia syndromes pose a major worldwide challenge to public health. In terminal stage of dementia, carers are responsible for decision making in end-of-life treatment and there may be multiple factors that contribute to the choice of a palliative or invasive treatment.; Aim: To identify possible factors that influence the decision-making of family caregivers on implementing invasive or palliative interventions for people with end stage dementia.; Design: A structured interview with family caregivers of elderly patients addressing aspects of the following categories: elderly with dementia, caregiver, medical treatment history. Statistical analysis was performed to test whether there was a significant association between the carer's decision (invasive or palliative treatment) and the collected variables.; Settingand Participants: The study was conducted in three hospitals in Brazil. Participants were family caregivers of inpatients with end stage dementia RESULTS: Most of caregivers chose not to perform invasive procedures. The factors with the greatest association with the decision for invasive care were: elderly with tracheostomy, dementia diagnosis for less than 2 years, caregiver's age less than 50 years, history of hospital admission in the last year, affirmation that interviewee would be surprised with the death of the elderly within 1year and the denial that health care team has already explained about treatment options.; Conclusion: There were identified several factors related to the carer, the elderly person and their medical treatment that may influence the choice between palliative and invasive care for the elderly person with dementia.; Copyright © 2017 Elsevier B.V. All rights reserved.

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Carer Characteristics and Health, Wellbeing and Employment Outcomes of Older Australian Baby Boomers

Supporting caregivers and enabling continued workforce participation are central strategies in Australia's response to an ageing population, however these strategies have potential disadvantages for carers, particularly women, including reduced workforce participation and retirement income, and poorer health status. This paper explores the nexus between paid work and caregiving for Australia's baby boomer cohort as this group faces unprecedented pressures to manage paid work alongside caring longer and more intensively for family members, including grandchildren. A sample of 1261 men and women aged 60 to 64 completed the 2011-12 Life Histories and Health survey, a sub-study of the New South Wales 45 and Up Study. The survey collected data on sociodemographic, psychosocial, life history and health-related variables including caregiving and employment status. Around a third (32.5%) of the sample (52.2% female) were involved in some type of caregiving at the time. Compared to non-carers, carers reported lower workforce participation (45.8% versus 54.7% for non-carers) as well as poorer health, more mobility difficulties, lower quality of life and lower self-rated SES. Carers who also cared for grandchildren were more likely to be in part-time or no paid work compared to other carers. Working carers tended to be more highly educated, have fewer mobility difficulties, better self-rated health and higher SES than non-working carers. Male carers were more likely than female carers to be in full-time or no paid work. Results indicate that reduced workforce participation and health status of caregivers varies by gender and type of caregiving. Policy reforms are recommended to mitigate these adverse consequences on those providing care, their families, employers and the community.

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The Unmet Needs of Patients and Carers within Community Based Primary Health Care

Introduction: Community Based Primary Health Care (CBPHC) is positioned as the foundation of integrated health systems, intended to support broader goals of population health and health system sustainability. CBPHC moves beyond traditional primary care (a physician visit) to team based care that spans organizational boundaries (such as primary care clinics + community care services). At the core of CBPHC are patients and their informal carers (family and friends) who can inform ongoing reforms in this sector by sharing their experience, particularly in areas that require improvement. The objective of this paper is to share the unmet needs of patients and caregivers within CBPHC. Methods: This study is part of a broader programme of research called, implementing integrated care for older adults with complex health needs (iCOACH). Semi-structured interviews are being conducted with older patients with complex care needs and with unpaid, informal carers across multiple CBPHC sites in Canada (Ontario and Quebec) and New Zealand. Interviews captured the roles, characteristics and needs of patients and carers, and were audio-recorded and transcribed verbatim. Interviews were reviewed by multiple team members and a consensus codebook was created. The code "unmet need" was extracted from the patient and carer transcripts, and analyzed for core themes using an inductive approach. Results: Unmet needs culminated into three broad themes across patient and carer interviews: Accessing Care; Quality of Care; and Missing Care. Many patients accessed care within CBPHC, but the model itself tended to be spread across multiple settings and providers. Patients and carers also required access to services that were outside the CBPHC model. Challenges arose due to lack of transportation, out-of-pocket expenses, limited availability of assistive devices to support mobility, and long wait times. Quality of care and relationships were compromised if there was a language barrier, and when services were misaligned with the preferences of patients and carers. Components of care were often missing, such as respite care for carers, supports for instrumental activities of daily living (e.g., home maintenance and transportation), and supports to reduce social isolation. Conclusions: Due to the complex health and social needs of patients and carers, they often require access to multiple services and providers who are seldom situated under the same roof. Finding ways to integrate across organizational boundaries may reduce areas of unmet need. Furthermore greater attention to the social determinants of health within CBPHC may create a more holistic experience for patients and carers. Lessons Learned: CBPHC is intended to deliver holistic integrated care but when situated within a fragmented health care system, challenges for patients and carers persist. Limitations: Further comparisons need to be made between the unmet needs between patients and caregivers in Canada and New Zealand. Suggestions for future research: Next steps will include the development of a framework that describes the policy and organizational context, and provider configurations in each of the study jurisdictions. How these factors relate to different patient and carer needs and experiences, including areas of unmet need, will be explored to inform the development of person centered CBPHC models. 

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The occurrence and persistence of thoughts of suicide, self-harm and death in family caregivers of people with dementia: a longitudinal data analysis over 2 years

Objective: Family caregivers of people with dementia often report high levels of stress and depression, but little is known about those who contemplate suicide or self-harm. This study explores thoughts of suicide, self-harm and death in dementia caregivers and investigates the characteristics that distinguish them from those without such thoughts.  Methods: Data were collected every 3 months, for 24 months, from 192 family caregivers of people with dementia living in the Netherlands. Caregivers did not have a clinical depression or anxiety disorder at baseline. Suicide-related thoughts were measured with an item from the Mini International Neuropsychiatric Interview, a diagnostic instrument for DSM-IV mental disorders. Fisher exact, analysis of variance or Kruskal-Wallis tests compared the characteristics of caregivers who had contemplated suicide with two comparison groups. Results: Within 24 months, 76 caregivers reported symptoms of a potential depression and were further assessed for suicidal thoughts. Nine carers (11.8%, 4.7% of the total sample) reported suicidal thoughts with three of those at multiple points. Caregivers with suicidal thoughts had more severe depressive and anxious symptoms, had a lower sense of competence and mastery, felt less happy and experienced more health problems, less family support and more feelings of loneliness than caregivers who had not. Conclusion: Suicidal thoughts are present in dementia caregivers and can persist across the care trajectory. Various psychological and social characteristics significantly distinguish caregivers with suicidal thoughts from those without. More research is needed to enable the identification of high-risk caregivers and provide an evidence base for the development of preventive strategies and interventions. 

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The burden perceived by informal caregivers of the elderly in Saudi Arabia

OBJECTIVES: The objective of this study was to discover the characteristics of informal caregivers of elderly patients; to determine the socioeconomic, psychological, and physical consequences facing informal caregivers; and to measure their burdens and needs. MATERIALS AND METHODS: This study was a cross-sectional survey of informal caregivers of elderly patients. Participants were recruited from different hospitals and primary care clinics in Riyadh, Saudi Arabia. For an intended sample size of 384 caregivers, a multistage sampling was used. A self-administered questionnaire was used to collect data. Data analysis included student's t-test and ANOVA to test for statistical significance. RESULTS: The study included 315 caregivers of elderly patients. Over half of the elderly patients were female (55.9%) and over 70 years old (65.7%); about 31% had chronic diseases or disabilities, which represented the majority of health problems reported by the elderly population. Most of the caregivers were family members (87.9%), young (43.8%), female (52.7%), unemployed (54.6%), and unmarried (58.1%). Most caregivers suffered from musculoskeletal problems (78.1%). The mean Zarit Burden Interview score was 31.3, which indicated a moderate burden. More than half of caregivers requested blood pressure (55.6%) and blood sugar measuring devices (53%). Three quarters (74.9%) of the caregivers wanted educational training to cope with emergencies. Most caregivers expressed a need for frequent healthcare for themselves (58.4%) and a home health visit service (72.9%) to support them in the care of their elderly. CONCLUSIONS AND RECOMMENDATIONS: Mobilization of resources in locations where these carers of the elderly live are greatly needed. In addition, health authorities should provide devices and essential training to manage the common problems and emergencies that informal caregivers have to deal with. Moreover, caregivers need follow-up supervision by a home visit team. Further studies are required to guide the implementation of the above advice.

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Negotiating the care-giving role: family members' experience during critical exacerbation of COPD in Norway

Healthcare policies often state that complex conditions are to be treated outside hospital in various forms of public-private partnership. Chronic obstructive pulmonary disease ( COPD) is a progressive illness that includes episodes of serious acute exacerbations characterised by extreme breathlessness. There is limited knowledge about COPD exacerbations from the perspective of family caregivers and implications of the changing boundary between hospital care and care at home. In this paper, we explore how caregivers negotiate their role as caregivers with patients and healthcare professionals during acute exacerbations. We conducted 10 qualitative interviews with family caregivers of COPD patients in 2011, all were spouses over the age of 60. The participants were recruited through the patient pool of ambulatory pulmonary services of two hospitals in Oslo, Norway. Data were interpreted using thematic analysis. The caregivers described a lack of understanding and support from health professionals in some situations. They shouldered considerable responsibility, but were not always acknowledged as competent carers by professionals. Caregivers had to balance their involvement. They noted that they could lose the professionals' co-operation if their involvement was perceived as interfering or preventing the professionals from exercising their expertise. However, by not sharing their personalised knowledge about the patients, they risked that the professionals would not understand the severity of the exacerbation, which could undermine their own ability to maintain a sense of safety and control. The negotiations caregivers participated in and the uncertainty they experienced shed new light on the complexity of their role, and the discrepancy between practice and ideals in healthcare policy regarding collaboration of care. It is crucial to develop further knowledge about structural, interactional and communicational facilitators and barriers for reaching shared understandings and facilitating mutual trust in these demanding situations. 

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The use of social healthcare resources and informal care characteristics care of immobilised homecare patients

Objective: To describe the use of social healthcare resources by immobilised patients and informal care characteristics and the level/degree of satisfaction with home care services.

Method: Descriptive observational study carried out in primary care. The target group were 369 randomly selected immobilised home care patients in the area of Albacete, Spain. The variables included were: socio-demographic data of the patient and carer; the use of social healthcare resources; perceived social support (DUKE-UNK questionnaire); family function (APGAR questionnaire); nursing care and home care services satisfaction (SATISFAD 10 questionnaire).

Results: 66.9% of immobilised homecare patients have high dependency and 18.6% have bedsores. The majority of informal carers are women (83.1%) with an average of 57.7 years of age (DE 15.1). The average intensity of care is 15.7 hours per day (DE 8.5) and the average length of care is 5 years. The average number of visits from nurses per month is 2.1 (DE 2.1), although this measurement is higher in patients with bedsores or multiple diseases. The most widely used social health care resources are telephone care (34.2%) and home care (20.3%), for which 65.6% of immobilised homecare patients receive dependency benefits. Overall satisfaction with home care is of a high degree.

Conclusion: Musculoskeletal disorders is the main reason for immobilisation in home care patients. Most informal carers are older women. The length and intensity of care is high and the main support comes from healthcare professionals. Patients make limited use of social healthcare resources.

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Children and adolescents as caregivers: who they are and what they do. An international literature review (1990-2006)

With a growing body of research on the situation of adult family caregivers in Germany, hardly anything is known about the situation of children who are involved into the care of their relatives. This literature study is part of a research project that intends to close this gap. Primarily, English literature of the last 15 years was analysed to gain insight into specific characteristics of young carers and their families. There is no standard definition of young carers. The prevalence of young carers has been underestimated for a long time; for Great Britain it is 1.5% of all children under the age of 18. Children provide caregiving tasks at any age, and the amount of their help grows with their age. The majority of young carers live in single-parent families, and the single parents are mostly mothers. More than half of the family members in need of care suffer from chronic illnesses that affect the body. There is a wide range of caregiving tasks described in the literature; young carers do the same as adult informal carers. However no uniform categorical system could be found, which makes comparisons between studies almost impossible. This might be due to a lack of a theoretical framework in most of the studies. Since it can be assumed, that children in Germany may become young carers as well, their situation needs to be studied under the specific circumstances of the German health care system.

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Carers in the region: a profile of the North West

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the North West region. In 2001 there were 722,122 carers in the North West region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the North West region.

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Carers in the region: a profile of the West Midlands

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the West Midlands region. In 2001 there were 556,689 carers in the West Midlands region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the West Midlands region.

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Predictors and consequences of perceived lack of choice in becoming an informal caregiver

Objectives: Using data from a national sample of informal caregivers to older adults, we identify predictors of lack of choice and the consequences of lack of choice in taking on the caregiving role.

Methods: A national telephone survey with 1397 caregivers was carried out to assess whether respondents had a choice in taking on the caregiving role, their demographic characteristics, the nature and duration of their caregiving experience, and its impact on their physical and psychological well-being. We compare caregivers who felt they had no choice in taking on the caregiving role to those who did.

Results: In total, 44% of caregivers reported a lack of choice in taking on the caregiving role. Highly educated, older caregivers caring for a younger care recipient with emotional or behavioral problems were most likely to report that they had no choice in taking on the caregiving role. Lack of choice is associated with higher levels of emotional stress, physical strain, and negative health impacts, after controlling for multiple confounds including level of care provided, relationship type, primary health condition of the care recipient, and demographic characteristics.

Conclusion: Lack of choice is an independent risk factor for the negative effects of caregiving, and clinicians should be vigilant to lack of choice as a marker of caregiver distress.

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Effectiveness of Physio Acoustic Sound (PAS) therapy in demented nursing home residents with nocturnal restlessness: study protocol for a randomized controlled trial

Background: Many older people with neuropsychiatric disorders such as Alzheimer's disease and frontotemporal dementia suffer from sleeping problems and often show nocturnal restlessness. Professionals and informal carers face considerable problems in solving these problems. Attempts to diminish these problems with medication in a safe and responsible manner have proven hardly effective or not effective at all. Therefore, nowadays the focus lies more on non-pharmacological solutions, for example by influencing environmental factors. There are indications that treatment with low-frequency acoustic vibrations, that is Physio Acoustic Sound (PAS) therapy, has a positive effect on sleeping problems. Therefore we study the effectiveness of PAS therapy in demented patients with nocturnal restlessness.

Methods: In a randomized clinical trial, 66 nursing home patients will be divided into two groups: an intervention group and a control group. For both groups nocturnal restlessness will be measured with actiwatches during a period of six weeks. In addition, a sleep diary will be filled in. For the intervention group the baseline will be assessed, in the first two weeks, reflecting the existing situation regarding nocturnal restlessness. In the next two weeks, this group will sleep on a bed identical to their own, but with a mattress containing an in-built PAS device. As soon as the patient is lying in bed, the computer programme inducing the vibrations will be switched on for the duration of 30 min. In the last two weeks, the wash-out period, the measurements of the intervention group are continued, without the PAS intervention.During the total study period, other relevant data of all the implied patients will be recorded systematically and continuously, for example patient characteristics (data from patient files), the type and seriousness of the dementia, occurrence of neuropsychiatric symptoms during the research period, and the occurrence of intermittent co-morbidity.

Discussion: If PAS therapy turns out to be effective, it can be of added value to the treatment of nocturnal restlessness in demented patients. Non-pharmacological PAS therapy is not only safe and patient-friendly, but it can also be widely used in a simple and relatively inexpensive way, both in institutions such as nursing homes and residential homes for the elderly, and at home. Ultimately, this may lead to a decrease in the frequent and still common use of psychotropic drugs. In addition, care needs of demented patients also may decrease as well as the number of preventable admissions to care institutions.

Trial registration: Netherlands Trial Register (NTR): NTR3242

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Predictors of entering 24-h care for people with Alzheimer's disease: results from the LASER-AD study

OBJECTIVES: Many studies have investigated predictors of people with dementia entering 24-h care but this is the first to consider a comprehensive range of carer and care recipient (CR) characteristics derived from a systematic review, in a longitudinal cohort study followed up for several years.

METHODS: We interviewed 224 people with Alzheimer's disease (AD) and their carers, recruited to be representative in terms of their severity, sex and living situation as part of the LASER-AD study; and determined whether they entered 24-h care in the subsequent 4.5 years. We tested a comprehensive range of characteristics derived from a systematic review, and used Cox proportional hazard regression to determine whether they independently predicted entering 24-h care.

RESULTS: The main independent predictors of shorter time to enter 24-h care were the patient being: more cognitively or functionally impaired (hazard ratio (HR) = 1.09; 95% CI = 1.06-1.12) and (HR = 1.04 95% CI = 1.03-1.05), having a paid versus a family carer (HR = 2.22; 95% CI = 1.39-3.57), the carer being less educated (HR = 1.43; 95% CI = 1.12-1.83) and spending less hours caring (HR = 1.01; 95% CI = 1.00-1.01).

CONCLUSION: As having a family carer who spent more time caring (taking into account illness severity) delayed entry to 24-h care, future research should investigate how to enable carers to provide this. Other interventions to improve patients' impairment may not only have benefits for patients' health but also allow them to remain longer at home. This financial benefit could more than offset the treatment cost. Copyright 2009 John Wiley & Sons, Ltd.

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Young caregivers in the end-of-life setting: a population-based profile of an emerging group

Purpose: Little is known about young caregivers of people with advanced life-limiting illness. Better understanding of the needs and characteristics of these young caregivers can inform development of palliative care and other support services.

Methods: A population-based analysis of caregivers was performed from piloted questions included in the 2001–2007 face-to-face annual health surveys of 23,706 South Australians on the death of a loved one, caregiving provided, and characteristics of the deceased individual and caregiver. The survey was representative of the population by age, gender, and region of residence.

Findings: Most active care was provided by older, close family members, but large numbers of young people (ages 15–29) also provided assistance to individuals with advanced life-limiting illness. They comprised 14.4% of those undertaking “hands-on” care on a daily or intermittent basis, whom we grouped together as active caregivers. Almost as many young males as females participate in active caregiving (men represent 46%); most provide care while being employed, including 38% who work full-time. Over half of those engaged in hands-on care indicated the experience to be worse or much worse than expected, with young people more frequently reporting dissatisfaction thereof. Young caregivers also exhibited an increased perception of the need for assistance with grief.

Conclusion: Young people can be integral to end-of-life care, and represent a significant cohort of active caregivers with unique needs and experiences. They may have a more negative experience as caregivers, and increased needs for grief counseling services compared to other age cohorts of caregivers.

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Former palliative caregivers who identify that additional spiritual support would have been helpful in a population survey

Background : Palliative care encompasses physical, psychosocial and spiritual care for patients and caregivers. No population data are available on bereaved people who subsequently report that additional spiritual support would have been helpful.

Methods : In a population survey, a respondent-defined question was asked regarding ‘additional spiritual support’ that would have been helpful if someone ‘close to them had died’ an expected death in the previous five years. Data (socio-demographic [respondent]); clinical [deceased]) directly standardized to the whole population were analysed.

Results : There were 14,902 participants in this study (71.6% participation rate), of whom 31% (4665) experienced such a death and 1084 (23.2%) provided active hands-on (day-to-day or intermittent) care. Fifty-one of the 1084 (4.7%) active caregivers identified that additional spiritual support would have been helpful. The predictors in a regression analysis were: other domains where additional support would have been helpful (OR 1.69; 95% CI 1.46–1.94; p < 0.001); and being female (OR 3.23; 95% CI 1.23 to 8.33; p = 0.017). ‘Additional spiritual support being helpful’ was strongly associated with higher rates where additional support in other domains would also have been helpful in: all bereaved people (2.7 vs 0.6; p < 0.0001); and in active caregivers (3.7 vs 0.8; p < 0.0001).

Conclusion : People who identify that additional spiritual support would have been helpful have specific demographic characteristics. There is also a strong association with the likelihood of identifying that a number of other additional supports would have been helpful. Clinically, the need for additional spiritual support should open a conversation about other areas where the need for further support may be identified.

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Health care experiences of people with dementia and their caregivers: a meta-ethnographic analysis of qualitative studies

BACKGROUND: Understanding the health care experience of people with dementia and their caregivers is becoming increasingly important given the growing number of affected individuals. We conducted a systematic review of qualitative studies that examined aspects of the health care experience of people with dementia and their caregivers to better understand ways to improve care for this population.

METHODS: We searched the electronic databases MEDLINE, Embase, PsychINFO and CINAHL to identify relevant articles. We extracted key study characteristics and methods from the included studies. We also extracted direct quotes from the primary studies, along with the interpretations provided by authors of the studies. We used meta-ethnography to synthesize the extracted information into an overall framework. We evaluated the quality of the primary studies using the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist.

RESULTS: In total, 46 studies met our inclusion criteria; these involved 1866 people with dementia and their caregivers. We identified 5 major themes: seeking a diagnosis; accessing supports and services; addressing information needs; disease management; and communication and attitudes of health care providers. We conceptualized the health care experience as progressing through phases of seeking understanding and information, identifying the problem, role transitions following diagnosis and living with change.

INTERPRETATION: The health care experience of people with dementia and their caregivers is a complex and dynamic process, which could be improved for many people. Understanding these experiences provides insight into potential gaps in existing health services. Modifying existing services or implementing new models of care to address these gaps may lead to improved outcomes for people with dementia and their caregivers.

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Informal caring in England and Wales - Stability and transition between 2001 and 2011

Informal caring is of significant and increasing importance in the context of an ageing population, growing pressures on public finances, and increasing life expectancy at older ages. A growing body of research has examined the characteristics associated with informal care provision, as well as the impact of caring for the carer's physical and mental health, and their economic activity. However, only a relatively small body of literature has focused on the study of ‘repeat’ or continuous caring over time, and the factors associated with such trajectories. In 2001, for the first time, the United Kingdom census asked about provision of informal care, enabling identification of the prevalence of informal caregiving at a national level. This paper follows up informal carers from the 2001 Census in order to examine their characteristics and circumstances 10 years later using a nationally representative 1% sample of linked census data for England and Wales, the Office for National Statistics Longitudinal Study. The analysis classifies the range of possible combinations of caring and non-caring roles between 2001 and 2011, focusing on the characteristics of those who were providing care at one, or both, time points. Among other results, the analysis identified that, among those who were carers in 2001, caring again in, or continuing to care until, 2011 was associated with being female, aged between 45 and 54 years in 2011, looking after the home, and providing care for 50 hours or more per week in 2001. Such results contribute to our understanding of a particular group of informal carers and provide a more nuanced picture of informal care provision at different stages of the life course.

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Informal home care and labor-force participation of household members.

In Germany, informal home care is preferred to professional care services in the public discussion as well as in legal care regulations. However, only minor importance is ascribed to the opportunity costs caregivers face. Therefore, this article explores the influence home care has on the labor supply of caregivers who cohabitate with the care recipient. I use data from the German Socio-Economic Panel from 2001 to 2007, which allows researchers to merge the characteristics of both groups for the first time. Owing to diverging gender roles, I examine female and male caregivers separately. The results show that having an individual in need of care in the household does not decrease labor supply to an economically relevant quantity. As providing care might be endogenous to the labor-supply decision, I test for endogeneity by using characteristics of care recipients as instruments and I additionally test for sample attrition. Moreover, the panel structure allows me to control for unobserved heterogeneity.

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Stress of Caregivers in Caring for People With Stroke Implications for Rehabilitation

Stroke may bring about various impacts on functional deficits to people with stroke, as well as caregiving stress. The present study aims at exploring the relationship between the demographic characteristics of 33 caregivers and the stress experienced plus their implications for rehabilitation. The patients' admission scores on the Chinese Mini-Mental State Examination (CMMSE), modified Barthel Index (MBI), and Relatives' Stress Scales (RSS) of caregivers were collected. It was found that older caregivers would experience more stress, while better independence and functioning of patients suggested lower personal distress. Admission Chinese Mini-Mental State Examination scores of patients had a negative correlation with the negative feeling subscale of Relatives' Stress Scales, implying that a higher level of stroke patients' dependence on the daily activity and reduction in physical ability of caregivers may hint at a higher level of personal distress for caregivers. Cognitive deficits of patients may also induce emotional distress for caregivers. Proper handling techniques and caregiving skills for the people with cognitive deficits and higher daily activity dependence are suggested for better management.

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Respite care as a community care service: factors associated with the effects on family carers of adults with intellectual disability in Taiwan

Background This study examines the effects and associated factors of respite care, which was legislated as a community service for adults with an intellectual disability (ID) in Taiwan in 1997.

Method A total of 116 family carers who live with an adult with ID and have utilised the respite care program were surveyed using standardised measures.

Results The results suggest that the most notable effects of respite care include improvement in the carers' social support and life satisfaction, and relief of psychological stress and overall burden of care. The factors associated with these effects include the way the participants have used the respite care and the users' individual characteristics.

Conclusions How families used the respite care, whether the carers practised a religion, and where the families resided, were the most significant factors in determining the effectiveness of the respite. Suggestions are made for making access to information about the program more widely available, and for extending the availability and duration of the service.

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Caring for the carers : the characteristics of district nursing support for family carers

This paper presents findings from an ethnographic study that examined how qualified district nurses’ conceptualized their role in relation to family carers and how they performed this aspect of their role.

A participant observational study involving fieldwork and in-depth interviews with six district nursing teams was undertaken over a 12-month period. Interview transcripts and fieldnotes were analysed by drawing upon the principles of dimensional analysis.

District nurses acted on the assumption that family carers would, by choice or default, provide care. Family carer support was conceptualized as a means of promoting self-care and the patient’s independence from nursing services. The rationale for providing family carer support was based largely on service capacity rather than on carer needs and preferences. Six characteristics of district nursing support for carers were identified: enabling, supporting, mediating, care substitution, crisis prevention and crisis intervention. Family carers were not recipients of district nursing support in their own right but were dependent upon the cared-for person receiving nursing care. This in turn was conditional upon others (general practitioners and hospitals) making appropriate patient referrals. Family carer support was also conditional upon effective communication and family carer receptiveness.

As the scope of home-based nursing continues to increase, district nurses need to take a more active stance in providing family carer support and adopt a family rather than patient-focused approach in order that family carers might be supported more effectively.

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Care management and care provision for older relatives amongst employed informal care-givers

This paper examines care management, or ‘managerial care’, a type of informal care for older adults that has been relatively neglected by researchers. While previous research has acknowledged that care-giving may involve tasks other than direct ‘hands-on’ care, the conceptualisation of managerial care has often been vague and inconsistent. This study is the first explicitly to investigate managerial care amongst a large sample of carers. In our conceptualisation, care management includes care-related discussions with other family members or the care recipient about the arrangements for formal services and financial matters, doing relevant paperwork, and seeking information. The study examines the prevalence of this type of care, the circumstances under which it occurs, its variations by care-giver characteristics, and its impact on the carers. We drew from the Canadian CARNET ‘Work and Family Survey’ a sub-sample of 1,847 full-time employed individuals who were assisting older relatives. The analysis shows that managerial care is common, distinct from other types of care, a meaningful construct, and that most care-givers provide both managerial and direct care. Care management includes both the orchestration of care and financial and bureaucratic management. Providing managerial care generates stress amongst women and interferes with work amongst men, and the aspect that generates the greatest personal and job costs amongst both men and women is the orchestration of care.

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Local authorities' use of carers grant: a report prepared for the Department of Health

This is the report of a study undertaken by the University of Leeds and commissioned by the Department of Health that aimed to get a better understanding of how local authorities in England spent their Carers' Grant allocations between 2005 and 2007 and how it enabled them to improve support for carers in their area. First introduced in April 1999, the Carers' Grant is provided to all councils with responsibility for social services in recognition of the support carers need for breaks and other services. [DH website abstract]

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The demographic characteristics and economic activity patterns of carers over 50: evidence from the English Longitudinal Study of Ageing

Studies on informal care provision have often focused on the provision of care for persons with a long term physical or mental ill-health or disability, or problems related to old age. However, the provision of care and support more broadly, for example in the form of childcare for grandchildren, can also impact on various aspects of a carer's life, such as their employment (if under the state retirement age), lifetime earnings and, by extension, pension income in later life. This article uses data from Wave 3 of the English Longitudinal Study of Ageing (ELSA) to explore the demographic characteristics, caring patterns, health status and economic activity patterns of carers aged over 50 in England. The results suggest that the nature of care provision differs across age groups, and that caring can be quite a different experience for older men and women. This article also sheds light on the characteristics of ‘round-the-clock’ carers, a relatively under-researched group which makes up just over one fifth of all carers aged 50 and over.

This article uses data from Wave 3 of the English Longitudinal Study of Ageing (ELSA) to explore the demographic characteristics, caring patterns, health status and economic activity patterns of carers aged over 50 in England.

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Changes in attributions as a consequence of training for challenging and complex behaviour for carers of people with learning disabilities: a systematic review

Aim  This paper reviews the evidence for changes in carers’ attributions regarding the behaviour of people with intellectual disabilities as a consequence of carer training in challenging and complex behaviour.

Method  Papers were included in the review if they reported outcomes for carer training on the behaviour of people with intellectual disabilities and used a measure of carer attribution of the behaviour of people with intellectual disabilities. The characteristics of the scales used and the content and length of training are considered as possible factors affecting changes in attribution.

Results  Eleven papers were reviewed, most studies using behavioural curricula for their training, and none explicitly set out to change attributions. Eight of the 11 papers reviewed reported changes in attribution although core characteristics of training did not distinguish those papers that reported such changes and those that did not.

Conclusions  Changes in beliefs and attributions occur even though these are not identified as a focus within the training provided. The present authors suggest that the formulation processes involved in behavioural training may play a key part in changing attributions as a consequence of this training. The present authors discuss the potential for more focussed intervention designed to change attributions and for better alignment of measures to specific attribution change expected as a result of specific training approaches.

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The influence of social support on caregiver coping

Investigations into the act of proving care to a dementing family member typically approach the phenomenon from a stress/burden paradigm. Many studies have sought to highlight the relationship between of a range of dementia care factors (such as illness duration, patient symptoms/characteristics, service provision, etc.) and the experience of caregiver stress. Caregiving a spouse with dementing illness is complex and multidimensional (Gubrium, 1995) it is therefore not surprising that the vast majority of stressor-based approaches, though very revealing, have been largely equivocal in their findings. The relationship between the social support of family and friends and caregiver coping is no exception and therefore remains essentially unclear particularly in terms of its contribution in ameliorating stress (Thompson et al, 1993). Caregiver studies do however consistently highlight the pathogenic qualities of coping with an experience in which 'families are faced with often overwhelming and uncontrollable stress than can take a toll on their emotional health and well-being' (Zarit et al, 1998; Bourgeois et al, 1996). This article, emanating from a PhD study into caregiver coping (Upton, 2001), illuminates the study of caregiving from a different perspective. It highlights and describes how phenomenological exploration deepens our understanding of how and why spouse caregivers cope and uses the influence of social support as an exemplar of the value and need for such exploration both for its own sake and also to inform service providers. The results revealed a universal phenomenon of psycho-physical distancing by family and friends affecting all forty-six spouse caregivers included in this study. The implications of these finding are discussed along with what constituted social support for these carers. Other phenomenological insights are revealed, not least how the individual caregiver's relationship to time, space and their own identity shaped their caregiving experiences.

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Burden and happiness in head and neck cancer carers: the role of supportive care needs

Purpose: Our study aimed to investigate the relationship between unmet supportive care needs and carer burden and happiness, in head and neck cancer (HNC).

Methods: Two hundred eighty-five HNC informal carers were sent a postal questionnaire between January and June 2014, which included the supportive care needs survey for partners and caregivers of cancer survivors (SCNS-P&C) and the CarerQol, which assesses burden and happiness. Multiple regression analysis was conducted to examine the association of (i) carer characteristics, (ii) carer situation, and (iii) unmet supportive care needs, with carer burden and happiness

Results: One hundred ninety-seven carers completed the questionnaire (response rate = 69 %), 180 of whom were included in the analysis. The majority were female (76 %), not in paid employment (68 %) and caring for their spouse (67 %). On average, carers reported relatively low levels of burden and relatively high levels of happiness. Carer factors explained 42 % of variance in levels of burden and 24 % of variance in levels of happiness. Healthcare service needs were associated with carer burden (β = .28, p = .04), while psychological needs (β = −.38, p = .028), health care service needs (β = −.30, p = .049), information needs (β = .29, p = .028), carer comorbidity (β = −.18, p = .030), and gender (β = −.16, p = .045) were associated with happiness.

Conclusions: Our results indicate that different aspects of carer characteristics and unmet needs are associated with carer burden and happiness. Efforts directed at reducing unmet healthcare service needs in particular are merited given their associations with both aspects of carer quality of life.

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A descriptive profile of caregivers of older adults with MS and the assistance they provide

Purpose. To describe and compare spousal and non-spousal caregivers of older adults with multiple sclerosis (MS), the nature and extent of assistance they provide, and the challenges they experience in the course of their caregiving role.

Methods. This cross-sectional descriptive study uses data from telephone interviews with 302 caregivers of older adults with MS. Descriptive statistics, Chi-square and Wilcoxon tests were used to generate and compare caregiver profiles. A proportional odds model examined factors associated the provision of greater extent of care.

Results. Spousal and non-spousal caregivers differed in age, sex, location of residence, and employment status. The characteristics of the people with MS for whom they cared were very similar. Spousal caregivers assisted with more activities, although non-spousal caregivers provided equivalent caregiving time. Twenty percent of caregivers spent more than 3.5 h per day caregiving. Caregiving time was influenced by cognitive and ADL status of the person with MS, and the number of caregiving activities performed. Challenges reported by caregivers were similar.

Conclusions. Both spousal and non-spousal caregivers of older adults with MS provide substantial assistance, and experience many challenges. Rehabilitation professionals need to be aware of the diversity of caregivers and the assistance they provide to facilitate appropriate support and resources.

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A systematic review of networked technologies supporting carers of people with dementia

We conducted a systematic review of the effectiveness of networked ICT interventions in supporting carers of people with dementia. Five bibliographic databases were searched and a total of 1,456 abstracts were identified as potentially relevant. From these we identified 15 papers describing five interventions: ComputerLink, AlzOnline, Caring for Others and two studies from the REACH project (TLC and CTIS). The interventions reviewed were multifaceted with elements of networked peer support. Outcomes were inconsistent but suggested that the interventions had moderate effects on improving carer stress and depression. Treatment effects were found to vary with care-giver characteristics such as ethnic groups, formal support and baseline burden. Further evaluation is needed in robust trials with good follow-up. 

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Association between informal caregiving and cellular aging in the Survey of the Health of Wisconsin: The role of caregiving characteristics, stress, and strain

The pathophysiological consequences of caregiving have not been fully elucidated. We evaluated how caregiving, stress, and caregiver strain were associated with shorter relative telomere length (RTL), a marker of cellular aging. Caregivers (n = 240) and some noncaregivers (n = 98) in the 2008–2010 Survey of the Health of Wisconsin, comprising a representative sample of Wisconsin adults aged 21–74 years, reported their sociodemographic, health, and psychological characteristics. RTL was assayed from blood or saliva samples. Median T and S values were used to determine the telomere-to-single copy gene ratio (T/S) for each sample, and log(T/S) was used as the dependent variable in analyses. Multivariable generalized additive models showed that RTL did not differ between caregivers and noncaregivers (difference in log(T/S) = −0.03; P > 0.05), but moderate-to-high levels of stress versus low stress were associated with longer RTL (difference = 0.15; P = 0.04). Among caregivers, more hours per week of care, caring for a young person, and greater strain were associated with shorter RTL (P < 0.05). Caregivers with discordant levels of stress and strain (i.e., low perceived stress/high strain) compared with low stress/low strain had the shortest RTL (difference = −0.24; P = 0.02, Pinteraction = 0.13), corresponding to approximately 10–15 additional years of aging. Caregivers with these characteristics may be at increased risk for accelerated aging. Future work is necessary to better elucidate these relationships and develop interventions to improve the long-term health and well-being of caregivers.

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Factor structure and construct validity of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer)

Background: The ASCOT-Carer is a self-report instrument designed to measure social care-related quality of life (SCRQoL). This article presents the psychometric testing and validation of the ASCOT-Carer four response-level interview (INT4) in a sample of unpaid carers of adults who receive publicly funded social care services in England.

Methods: Unpaid carers were identified through a survey of users of publicly funded social care services in England. Three hundred and eighty-seven carers completed a face-to-face or telephone interview. Data on variables hypothesised to be related to SCRQoL (e.g. characteristics of the carer, cared-for person and care situation) and measures of carer experience, strain, health-related quality of life and overall QoL were collected. Relationships between these variables and overall SCRQoL score were evaluated through correlation, ANOVA and regression analysis to test the construct validity of the scale. Internal reliability was assessed using Cronbach’s alpha and feasibility by the number of missing responses.

Results: The construct validity was supported by statistically significant relationships between SCRQoL and scores on instruments of related constructs, as well as with characteristics of the carer and care recipient in univariate and multivariate analyses. A Cronbach’s alpha of 0.87 (seven items) indicates that the internal reliability of the instrument is satisfactory and a low number of missing responses (<1 %) indicates a high level of acceptance.

Conclusion: The results provide evidence to support the construct validity, factor structure, internal reliability and feasibility of the ASCOT-Carer INT4 as an instrument for measuring social care-related quality of life of unpaid carers who care for adults with a variety of long-term conditions, disability or problems related to old age.

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The caregiving journey for family members of relatives with cancer: how do they cope?

Family caregivers need adequate support from healthcare professionals to complete the demands associated with caregiving with minimal impact on their own health and well-being. An optimal balance of provision of care between family and support services has not been achieved; therefore, this literature review investigates how family caregivers endure and cope with the challenges of caring for an adult relative with cancer. This review considered the characteristics of caregivers and their functioning, the external and internal supports that help them cope, the ongoing challenges as they journey along the caregiving trajectory, the personal costs of caregiving, and how caregivers cope with supporting their family members through to the end of their journeys. The literature provides an abundance of research on the numerous challenges encountered by families living with cancer; however, little research has been conducted on the coping strategies used by family caregivers at specific stages along the illness trajectory that either optimize or hinder personal recovery. Even less information is available on interventions nurses can introduce to ease the caregiving burden. Improving nurses' understanding of the stressors and unmet needs associated with caregiving is fundamental to the development of effective family-focused clinical interventions.

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Differential impacts of care- giving across three caregiver groups in Canada: end- of- life care, long- term care and short- term care

Using data from Statistic Canada's General Social Survey Cycle 21 (GSS 2007), this study explores whether differences exist in the impacts of care-giving among three groups of caregivers providing informal care either in the caregiver's or recipient's home, or in other locations within the community: (i) those providing end-of-life (EOL) care (n = 471); (ii) those providing long-term care (more than 2 years) for someone with a chronic condition or long-term illness (n = 2722); and (iii) those providing short-term care (less than 2 years) for someone with a chronic condition or long-term illness (n = 2381). This study lays out the variation in sociodemographic characteristics across the three caregiver groups while also building on our understanding of the differential impacts of care-giving through an analysis of determinants. All three groups of caregivers shared a number of sociodemographic characteristics, including being female, married, employed and living in a Census Metropolitan Area (CMA). With respect to health, EOL caregivers were found to have significantly higher levels of ‘fair or poor’ self-assessed health than the other two groups. Overall, the findings suggest that EOL caregivers are negatively impacted by the often additional role of care-giving, more so than both short-term and long-term caregivers. EOL caregivers experienced a higher proportion of negative impacts on their social and activity patterns. Furthermore, EOL caregivers incurred greater financial costs than the other two types of informal caregivers. The impacts of EOL care-giving also negatively influence employment for caregivers when compared with the other caregiver groups. Consequently, EOL caregivers, overall, experienced greater negative impacts, including negative health outcomes, than did long-term or short-term caregivers. This provides the evidence for the assertion that EOL care-giving is the most intense type of care-giving, potentially causing the greatest caregiver burden; this is shown through the greater negative impacts experienced by the EOL caregivers when compared with the short-term and long-term caregivers.

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Case management in primary palliative care is associated more strongly with organisational than with patient characteristics: results from a cross-sectional prospective study

Background: Case managers have been introduced in Dutch primary palliative care; these are nurses with expertise in palliative care who offer support to patients and informal carers in addition to the care provided by the general practitioner and home care nurses. This study aims to describe support and investigate what characteristics of patients and the organizational setting are related to the number of contacts and to the number of times topics are discussed between the case manager and patients and/or informal carers.

Methods: Prospective study following cancer patients (n = 662) receiving support from a palliative care case manager in Dutch primary care, using registration forms filled out by the case manager after contact with the patient and/or informal carer. In backward linear regression, the association was studied between patient or organizational characteristics and the number of contacts and the number of times conversation topics were discussed.

Results: Organizational characteristics add more to explained variability in data than patient characteristics. Case managers provide support in a flexible manner with regard to the number, mode, persons present, and duration of contacts. Support covered all domains of palliative care, with most attention given to physical complaints, life expectancy and psychological aspects.

Conclusions: Support offered by the case managers is prompted by characteristics of the organization for which they work. This is contradictory to the idea of patient centered care highly valued in palliative care.

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Putting stroke outcomes into context - Assessment of variations in the processes of care

Background: Comparative studies of patient outcomes consistently find that variations cannot be explained by case mix alone, suggesting that differences in the process of care may contribute to variations in outcome. We sought to describe local medical and social services available to patients participating in a multinational study of stroke services and outcomes. Methods: Key informant interviews were conducted with service providers in participating centres. A semi-structured interview schedule was used to describe local models of clinical care, types of community care available and the role of the family in caring for patients. Results: Data were provided by 15 centres in 14 European states. Models of clinical care include multidisciplinary and ‘geographical’ stroke units, dedicated stroke beds, neurologist-led care and physician-led care. Nurse to patient ratios range from 1:3 to 1:15. Three patterns of rehabilitation provision emerge and estimates of acute physiotherapy range from 30 to 180 min/day. In almost all centres the patient's family is expected to assume responsibility for care after discharge but there are wide variations in the levels of community support available to informal carers. Conclusions: The extent to which the structures and processes of care vary across a sample of European centres highlights the need for caution in assuming that studies which control for patient characteristics thereby control for all relevant variables. There are also implications for the implementation of international gold standards of care. Future analyses will relate our findings to 3 month and 1 year outcomes and assess their impact.

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Informal care and home-based palliative care: the health-related quality of life of carers

Health is an important factor in the capacity of family and friends (informal carers) to continue providing care for palliative care patients at home. This study investigates associations between the health-related quality of life (HRQOL) of current informal carers and characteristics of the carers and their caregiving situation, in a sample of Australian carers of palliative care patients. The cross-sectional study used the Short Form-36 Health Survey to measure HRQOL. It found carers to have better physical health and worse mental health than the general population. Of 178 carers, 35% reported their health to be worse than it was one year ago. Multiple regression analyses found that the HRQOL of carers whose health had deteriorated in the previous year was associated with the patient's care needs but not the carer's time input, unlike the carers reporting stable health. Clinicians caring for palliative care patients should be alert to the potential health impairments of informal carers and ensure that they are adequately supported in their caregiving role and have access to appropriate treatment and preventive health care.

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Social participation: how does it vary with illness, caring and ethnic group?

It has long been accepted that lack of social participation in wider society is one aspect or one definition of poverty. Current concerns with the extent and distribution of social capital as both a measure of a good society and as means to upward mobility also emphasise the importance of social contacts and networks to the well-being of individuals and communities. While research has often focused on ‘civic participation’ and the measurement of trust, more informal social bonds are also a crucial part of individuals’ social capital. Moreover, informal social capital or social participation might be particularly important for those whose circumstances make them already more vulnerable to marginalisation, exclusion or poverty. For example, social interaction has been argued to be conducive to better outcomes for those with health problems; and there is an extensive literature which aims to chart and explain the role of ‘ethnic capital’ in the life chances of minority ethnic groups. I use the British Home Office Citizenship Survey 2001 for England and Wales to explore the impact on four aspects of lack of social engagement of long-term illness, caring for someone with such an illness, and ethnicity. Controlling for a range of characteristics and examining the relationships separately for men and women there is evidence that between them, the four measures reveal an underlying propensity for reduced social contact. Other things being equal, illness has little association with reduced social participation, but caring does seem to affect opportunities for sociability. Members of some ethnic groups are less likely to engage in neighbourly social visiting than others, and these differences are little affected by income level. By contrast differences in ‘going out’ across groups can largely be explained by differences in income. Overall, social engagement among male Bangladeshis and to a lesser extent Pakistanis is high, whereas Black Africans and Black Caribbeans, especially women, are notable for their lack of opportunities for social engagement compared with their otherwise similar peers. They would appear to be particularly at risk of social isolation, with consequences for their current and future welfare. 

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Scottish Household Survey analytical topic report: characteristics and experiences of unpaid carers in Scotland: research findings

The main findings of research that aimed to provide an indication of which types of carers may be in particular need of support, and examine the demographic characteristics of carers are reported. The report analysed responses to the Scottish Household Survey between 1999 and 2004.

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Caregivers' relationship closeness with the person with dementia predicts both positive and negative outcomes for caregivers' physical health and psychological well-being

Closer relationships between caregivers and care recipients with dementia are associated with positive outcomes for care recipients, but it is unclear if closeness is a risk or protective factor for the health and psychological well-being of caregivers. We examined 234 care dyads from the population-based Cache County Dementia Progression Study. Caregivers included spouses (49%) and adult offspring (51%). Care recipients mostly had dementia of the Alzheimer's type (62%). Linear mixed models tested associations between relationship closeness at baseline or changes in closeness prior to versus after dementia onset, with baseline levels and changes over time in caregiver affect (Affect Balance Scale, ABS), depression (Beck Depression Inventory, BDI), and mental and physical health (components of the Short-Form Health Survey, SF-12). After controlling for demographic characteristics of the caregiver, number of caregiver health conditions, and characteristics of the care recipient (type of dementia, functional ability, and behavioral disturbances), we found that higher baseline closeness predicted higher baseline SF-12 mental health scores (better mental health) and lower depression. Higher baseline closeness also predicted greater worsening over time in ABS and SF-12 mental health. In addition, caregivers who reported a loss of closeness in their relationship with the care recipient from pre- to post-dementia displayed improved scores on ABS and SF-12 mental health, but worse SF-12 physical health over the course of the study. These results suggest that closeness and loss of closeness in the care dyad may be associated with both positive and adverse outcomes for caregivers, both cross-sectionally and over time.

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Youth adjustment to parental illness or disability: The role of illness characteristics, caregiving, and attachment

This study aimed to (1) examine relations between youth adjustment and three sets of predictors: parental illness/disability characteristics, caregiving, and parent–child attachment, and (2) explore differences on these variables between youths of parental physical illness/disability and youths of parental mental illness. Eighty-one youths between 10 and 25 years of a parent with a physical illness/disability (35%) or a mental illness (43%) completed a series of self-report measures assessing perceived characteristics of the parent's illness/disability, caregiving experiences, and adjustment outcomes. Results revealed a set of predictors of poorer youth adjustment: Gradual illness/disability onset, being male, isolation, lower perceived maturity, and less choice in caregiving. Youths of parental mental illness differed from youths of parental physical illness/disability on emotional distress (worry and discomfort) dimensions of caregiving. Youth–parent attachment security was associated with youth caregiving and there was a trend for attachment to vary according to parental illness/disability type. Findings highlight young caregiving as an important target for service and policy planning.

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Home-based palliative care in Sydney, Australia: the carer's perspective on the provision of informal care

The provision of home-based palliative care requires a substantial unpaid contribution from family and friends (i.e. informal care). The present cross-sectional descriptive study, conducted between September 2003 and April 2004, describes this contribution and the impact it has on those providing informal care. The participants were 82 informal carers of patients registered with two community palliative care services in Sydney, Australia (40% of eligible carers). Carers were interviewed to assess the care recipient's care needs, the care provided by the informal carer and the health status of the carer (using the 36-Item Short Form Health Survey). A number of open-ended questions asked about the impact of providing care and the type of support that carers would find helpful. Most carers reported that care recipients required help with household tasks and many needed assistance with personal activities of daily living, taking medications and organisational tasks. In the majority of cases, the principal carer provided all or most of this help. Although, on average, the physical health of carers was similar to that of the Australian population, their mental health scores were lower. Many carers reported effects on social and family relationships, restrictions on their participation in work and leisure activities, and a range of emotional reactions to their caring situation. The support carers said they would like included information and advice, in-home respite, help with household tasks, and financial support. The present study supports the view that effective support for carers must recognise the pre-existing relationship between carer and recipient, and the differing needs of individual carers.

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Urban-rural comparisons of outcomes for informal carers of elderly people in the community: a systematic review

As the age of the general population increases, the number of elderly people who need care is increasing. It has been suggested that rural carers may be disadvantaged compared to urban carers, but it is not clear what affect geographic location has on carers. This paper presents a systematic review of the literature on urban–rural comparisons on various outcomes for informal carers who provide care for elderly people in the community. Of 150 articles that were reviewed, eight articles were included with three themes in the outcomes for carers: service use, health promotion behaviors and psychological health (such as carer stress, burden or depressive symptoms). Overall, there were few consistent or statistically significant differences between urban and rural carers. Many of the differences observed were explained by other factors, such as carer or care recipient characteristics. The literature search was limited to papers in the English language, involving quantitative methods and published in peer-reviewed journals. There were not enough studies found to examine other outcomes or to pool data across studies. There is too little evidence comparing urban and rural carers to inform clinicians and policy makers. More good-quality research is urgently needed.

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Access to respite breaks for families who have a relative with intellectual disabilities: a national survey

Aims.  This paper reports the findings of a national study of the variations in the provision and correlates of respite breaks to families.

Background.  Internationally, respite breaks are a major support service to family carers, demand for which often exceeds supply for persons with an intellectual disability. Hence, the length of breaks available to families has to be rationed. Nurses are often involved in such decisions.

Method.  National data on the use of respite breaks by over 4000 families in a full calendar year (2008) were analysed to examine the variation within the Republic of Ireland on two indicators: namely the proportion of carers who had any access to breaks and the median number of days they had received.

Findings.  Striking differences across health service areas were found on both indicators of usage. These were not solely attributable to the availability of provision but also reflected variations in the criteria local services used to allocate places. However, those persons with more severe disabilities were given priority, whereas carer characteristics were not a major influence. Contact with social workers and community nurses also increased the likelihood of carers receiving respite breaks.

Conclusion.  Intra-country comparisons of service delivery should assist planners in creating more equitable access to respite breaks and the development of more explicit eligibility criteria for their use. Nurses are well placed to lead on this.

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Social support in the case of illness: intergenerational solidarity

Background: Social support received through different forms of help from members of one's social network is an important element of coping with illness. In the case of illness, family members are the main providers of support, both within the same generation, but also, and increasingly so, between generations. This informal social support is related to socio-economic conditions of individuals: it is more common in lower economic and educational groups. Members of the middle generation, who help both the young and the old, are the main support providers. Also, female gender is the most significant predictor of the care burden. Withdrawing role of the welfare state in the postmodern society means shifting more responsibilities for care from the formal to informal sector. The aim of our study was to look into the characteristics of intergenerational support in illness in Slovenia. Methods: A cross-sectional study on personal support networks of the residents of Slovenia, sample size 5013, data collection by computerassisted telephone interviews, respondents above 18 years of age. Multiple Classification Analysis (MCA) was used for data analysis to find out how much the dependent variable deviated from the mean as a result of a given respondent characteristic while controlling for the effects of all others. Results: The analysis showed the proportion of respondents’ social network that would provide support in the case of illness and could be defined as intergenerational network. Intergenerational ties represent about 35 % of the whole support netork in illness. The most frequent receivers are the youngest group of respondents (18–29), followed by the 60+ age group. Women receive more help than men, especially those who are widows, living alone or living in multigenerational households. Intergenerational support is more frequent among the less educated respondents. Discussion: Our results comply with the findings in the literature, and are indicating that the actual trends in the changing structure and composition of the family, combined with less support from institutional health- and social care, is increasing the care burden of the informal carers within families. Conclussions: Health and social care policy and practice need awarness of the contextual factors of health care outcomes, taking into consideration social support networks’ functions.

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Screening cancer patients' families with the distress thermometer (DT): a validation study

Although family members of cancer patients are at great risk of experiencing psychological distress, clinical tools to assist with recognizing and intervening with appropriate psychosocial care are sparse. This study reports on the first validation of the distress thermometer (DT) as a screening instrument for symptoms of depression and anxiety in family members of cancer patients. The DT was administered with the Hospital Anxiety and Depression Scale (HADS) in a sample of 321 family members. Receiver operating characteristics (ROC) demonstrated that the DT has good diagnostic utility relative to the HADS (area under the curve= 0.88 relative to the HADS anxiety scale; 0.84 relative to the HADS depression scale, respectively). The ROC curves indicate that using a cut-off of 4/5 maximizes sensitivity (86.2% HADS anxiety scale; 88.2% HADS depression scale) and specificity (71.2% HADS anxiety scale; 67.6% HADS depression scale); however, the alternative lower cut-off of 3/4 increases sensitivity (94.1% for both scales) and hence reduces the risk of missing distressed family members (specificity is 62.9% for HADS anxiety scale; 59.1% for HADS depression scale). The results offer validation of the DT for screening family members of cancer patients and support its use for clinical assessment. Distress screening with DT for family members of cancer patients is a promising and efficient approach to integrating family members in the program of care and provides the first step toward meeting their unmet needs with referral for supportive services. Copyright © 2008 John Wiley & Sons, Ltd.

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Mental health of carers

This report presents the findings of a survey of the mental health of carers living in England. The survey was commissioned by the Department of Health and was carried out between March and July 2001. It is one of a series of surveys of different population groups which began in 1993. The sample for the survey was obtained from people who were identified as carers on the basis of questions included in the 2000 General Household Survey. This report describes the extent to which carers experience mental health problems, such as depression, anxiety and phobias, and identifies a number of factors which are associated with increased levels of such symptoms. It considers a range of factors, such as the socio-demographic characteristics of the carer themselves, their health, the characteristics of those they care for, and the support they receive in their caring role. The report also considers to what extent those carers with mental health problems receive treatment. The report includes a description of the survey methods used and aims to provide an overview of the main topics covered.

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The effects of ill health and informal care roles on the employment retention of mid-life women: Does the workplace matter?

This article uses longitudinal data to measure the effects of ill health and informal care roles on the employment chances of mid-life women, and to examine how these effects are mediated by workplace characteristics. We find that women in jobs with lower skills/status encounter the greatest difficulty in finding accommodations for changes in their health and informal care roles. We identify an important role for paid sick leave and holiday leave in boosting employment retention. However, we find that the positive employment effects of permanent contracts do not extend to women experiencing increased informal care roles. Additionally, we do not identify a positive link between employment retention and flexible working time arrangements. However, we do establish a link between a preference for reduced working hours and employment cessation, suggesting that some women experience problems in achieving flexible working hours and that this causes some of them to leave work altogether. We argue that these findings are relevant to the design of policy initiatives aimed at lifting rates of workforce participation as part of the response to population ageing.

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People not processes: the future of personalisation and independent living

This report summarises findings from two seminars which aimed to bring together a range of perspectives on personalisation and its future. Participants included service users, carers, social care practitioners (including a personal assistant, support worker and a care home manager) and policy makers. The report looks at what personalisation meant those attending and presents some key characteristics. It then gives brief examples of how service users, carers and practitioners have experienced personalisation; identifies barriers to accessing personalised services; and provides examples of good services and hopes for the future. The agendas for the two seminars are included as appendices. The report is available in pdf and online format. The online report features videos of presentations made at the seminars, including video accounts of individual stories demonstrating how flexible approaches to service delivery are more empowering for the person receiving those services.

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A comparison of elderly day care and day hospital attenders in Leicestershire: client profile carer stress and unmet need

Traditionally, day care for elderly persons has been provided by health or social services; however, recently facilities have been developed by voluntary organizations. This study was conducted to examine the characteristics of elderly clients with mental health problems attending these various settings, and to identify any areas of unmet need. One hundred and twenty-nine clients attending ten different day care facilities and their carers were interviewed in a standardized manner.There were both similarities and important differences between clients attending day hospitals, social services and Age Concern day centres. Day centres had a higher proportion of cognitively impaired clients than day hospitals. Although there were similar rates of depression across all settings, the severity of depression was greater in those attending Age Concern day centres. Patients at day hospitals suffering from dementia were more likely to be psychotic or behaviourally disturbed. The reasons for these differences are discussed in detail. Carers and clients were generally satisfied with services, though professionals were less satisfied. There is a need for joint planning and commissioning of day care to provide maximum flexibility and co-ordination of services.

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Cash for care in the French welfare state: a skilful compromise?

The French system of social care policy for dependent older people is an allowance known as the Prestation Specifique Dependance (PSD) from January 1997 to December 2001 and subsequently the Allocation Personalisee a l'Automie (APA) from January 2002 for services or to pay a member of the family. The chapter covers demographic factors underlying this policy development with statistical tables, and the two principal stages of French social care policy, examining the impact of these on carers who may be either formal (paid) or informal (unpaid). The development in France of a policy relating to frail older people has been very slow with the political debate comprising four main issues - compulsory or optional insurance, funding and management, the relationship of the different welfare sectors and the relationship between the family, the market and the state. The development of the PSD and its characteristics and take-up rates are explored. The policy was much delayed provoking intense dissatisfaction from [...]

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Providing Informal Care in Terminal Illness: An Analysis of Preferences for Support Using a Discrete Choice Experiment

Background: The trend for terminally ill patients to receive much of their end-of-life care at home necessitates the design of services to facilitate this. Care at home also requires that informal care be provided by family members and friends. This study investigated informal carers’ preferences for support services to aid the development of end-of-life health care services. Methods: This cross-sectional study used 2 discrete choice experiments to ascertain the preferences of carers supporting patients with different levels of care need, determined by the assistance needed with personal care and labeled High Care (HC) and Low Care (LC). The sample included 168 informal carers of people receiving palliative care at home from 2 palliative care services in Sydney, Australia. Data were collected in face-to-face interviews; carers chose between 2 hypothetical plans of support services and their current services. Data were analyzed with generalized multinomial logit models that were used to calculate the impact of each attribute on the probability of a carer choosing a service plan. Results: Preferred support included nursing services; the probability of choosing a plan increased significantly if it included nurse home visits and phone advice (P < 0.001). HC carers also wanted doctor home visits, home respite, and help with personal care (P < 0.05), and LC carers wanted help with household tasks, transport, and a case coordinator (P < 0.001). On average, both groups of carers preferred their current services, but this varied with characteristics of the carer and the caregiving situation. Conclusions:The most valued services are those that support carers in their caregiving role; however, supportive care preferences vary with the different circumstances of patients and carers.

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Focus on home: what time-use data can tell about caregiving to adults

This study analyses data from Statistics Canada's 1998 social survey of 10,749 people to learn more about the nature and situation of Canadian adults providing care at home to other adults. Data included time-use and respondents' sociodemographic, cultural, work, and leisure characteristics, as well as outcome factors. The analyses found 212 respondents (about 2 percent) providing personal, medical, or other care to other household adults on the day studied. Carers were compared to those not found to provide these services. The article explores time-use trade-offs, feelings of stress, and the ramifications of gender, age, and paid work in this newly reemerging use of household space.

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Do older patients and their family caregivers agree about the quality of chronic illness care?

Objective: Family caregivers often accompany patients to medical visits; however, it is unclear whether caregivers rate the quality of patients' care similarly to patients. This study aimed to (1) quantify the level of agreement between patients' and caregivers' reports on the quality of patients' care and (2) determine how the level of agreement varies by caregiver and patient characteristics.

Design: Cross-sectional analysis. Participants: Multimorbid older (aged 65 and above) adults and their family caregivers (n = 247).

Methods: Quality of care was rated separately by patients and their caregivers using the Patient Assessment of Chronic Illness Care (PACIC) instrument. The level of agreement was examined using a weighted kappa statistic (Kw).

Results: Agreement of caregivers' and patients' PACIC scores was low (Kw = 0.15). Patients taking ten or more medications per day showed less agreement with their caregivers about the quality of care than patients taking five or fewer medications (Kw = 0.03 and 0.34, respectively, P < 0.05). Caregivers who reported greater difficulty assisting patients with health care tasks had less agreement with patients about the quality of care being provided when compared with caregivers who reported no difficulty (Kw = −0.05 and 0.31, respectively, P < .05). Patient–caregiver dyads had greater agreement on objective questions than on subjective questions (Kw = 0.25 and 0.15, respectively, P > 0.05).

Conclusion: Patient–caregiver dyads following a more complex treatment plan (i.e. taking many medications) or having more difficulty following a treatment plan (i.e. having difficulty with health care tasks) had less agreement. Future qualitative research is needed to elucidate the underlying reasons patients and caregivers rate the quality of care differently.

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Scottish Household Survey analytical topic report: characteristics and experiences of unpaid carers in Scotland

This report discusses the characteristics and experiences of unpaid carers and those in receipt of unpaid care in Scotland, by analysing the Scottish Household Survey from 1999 to 2004. The aim of the report is to provide a clear picture of unpaid carers and identify those groups of carers who are in particular need of support in order to inform the development of Scottish Executive policy on carers.

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Are informal caregivers less happy than noncaregivers? Happiness and the intensity of caregiving in combination with paid and voluntary work

Informal caregivers are one of the pillars of home health care. In the Netherlands, the free help they provide to sick or disabled family members, acquaintances or friends exceeds the number of hours of home care provided by professionals. While the government welcomes their contribution, there is concern about the potential burden their work imposes on them. On the one hand, there is concern that informal caregiving could be experienced as a burden and diminish subjective well-being; on the other, helping others as a meaningful activity might increase their subjective well-being. Happiness ratings (as an indicator of subjective well-being) of persons whose involvement in informal caregiving, voluntary work and paid work ranged from none to full time were analysed using multivariate regression models, which also took into account levels of physical disability and socio-economic characteristics (age, sex, household composition, education level). The sample consisted of 336 informal caregivers and 1765 noncaregivers in the Dutch population. In line with the subjective well-being assumption, the results suggest that caregivers are happier than noncaregivers when they provide care for <6 hours a week; and in line with the burden assumption, the results show that providing care for more than 11 hours a week is associated with lower levels of happiness. Other results contradicted the burden assumption that combining caregiving with paid or voluntary work is associated with more time burden and less happiness. The result that combining caregiving with paid employment or volunteering is related to higher rates of happiness confirms the subjective well-being assumption. It is concluded that these cross-sectional results open ways to longitudinal research that can inform governments in the development of policies to support informal caregivers.

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Self-efficacy and health-related quality of life in family carers of people with dementia: a systematic review

Objectives: This review aims to explore the role of self-efficacy (SE) in the health-related quality of life (QoL) of family carers of people with dementia.

Methods: A systematic review of literature identified a range of qualitative and quantitative studies. Search terms related to caring, SE, and dementia. Narrative synthesis was adopted to synthesise the findings.

Results: Twenty-two studies met the full inclusion criteria, these included 17 quantitative, four qualitative, and one mixed-method study. A model describing the role of task/domain-specific SE beliefs in family carer health-related QoL was constructed. This model was informed by review findings and discussed in the context of existing conceptual models of carer adaptation and empirical research. Review findings offer support for the application of the SE theory to caring and for the two-factor view of carer appraisals and well-being. Findings do not support the independence of the negative and positive pathways. The review was valuable in highlighting methodological challenges confronting this area of research, particularly the conceptualisation and measurement issues surrounding both SE and health-related QoL.

Conclusions: The model might have theoretical implications in guiding future research and advancing theoretical models of caring. It might also have clinical implications in facilitating the development of carer support services aimed at improving SE. The review highlights the need for future research, particularly longitudinal research, and further exploration of domain/task-specific SE beliefs, the influence of carer characteristics, and other mediating/moderating variables.

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The 'Badanti' (Informal Carers) Phenomenon in Italy: Characteristics and Peculiarities of Access to the Health Care System 1

Observing and studying the caregiver phenomenon means, above all, analysing female migration, which is a particular characteristic of Italian immigration. In this paper, we examine and describe the informal caregiver phenomenon in Italy, emphasising the role these women play in the family-based welfare system. We describe the phenomenon, or care work, to analyse the role of the caregiver (as resource and as user) in the Italian welfare system. We argue that these women care workers are isolated from the rest of the Italian community and are not sufficiently integrated within the Italian welfare system. Their presence has transformed the Italian welfare system.

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Give me a break! Informal caregiver attitudes towards respite care

Background/objective: Because informal health care is now recognized to be indispensable to health care systems, different forms of respite care have been developed and publicly funded that supposedly alleviate caregivers’ perceived burdens and help prolong the care giving task. Nonetheless, the use of respite care services is low even among substantially strained caregivers. To throw light on this low usage, this paper explores the associations between attitudes towards respite care, characteristics of the care giving situation, and the need and use of respite care.

Method: The survey, administered to a sample of 273 informal caregivers, addressed caregiver, care recipient, and care giving situation characteristics, as well as the familiarity and use of respite care services. It also included a sub-set of 12 statements eliciting attitudes towards respite care from an earlier study [Van Exel NJA, De Graaf G, Brouwer WBF. Care for a break? An investigation of informal caregivers’ attitudes toward respite care using Q-methodology. Health Policy 2007;83(2/3):332–42]. Associations between variables were measured using univariate statistics and multinomial logistic regression.

Results: We found three caregiver attitudes, distributed fairly equally in the sample, that are apparently associated with caregiver educational level, employment status, health and happiness, as well as care recipient gender, duration and intensity of care giving, relationship, co-residence, need for surveillance, and subjective burden and process utility of care giving. However, the relation between attitude and familiarity with and use of respite care services is ambiguous.

Conclusions: Although further exploration is needed of the mix of Q-methodology and survey analysis, the overall results indicate that a considerable portion of the caregiver population needs but does not readily ask for support or respite care. This finding has important policy implications in the context of an ageing population.

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Caring for family members with chronic physical illness: a critical review of caregiver literature

This article reviews 19 studies (1987–2004) on quality of life for family caregivers helping those with chronic physical illness. Here we explore the concepts of and instruments used to measure caregivers' quality of life. We were particularly interested in understanding stress-related variables and documenting factors influencing quality of life based on family stress theory. Findings show that various positive and negative terms equated with quality of life were used to measure them. Results indicate that stress-related variables as possible predictors influencing caregivers' quality of life include: patient and caregiver characteristics, stressors, stress appraisal, stress coping methods, and social support. Our recommendations touch upon applying theory for intervention, developing measurement, making operable the concepts for measuring, and the need for longitudinal and comprehensive study.

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Burden on caregivers of people with schizophrenia: comparison between Germany and Britain

Background Burden on the relatives of patients with schizophrenia may be influenced not only by patient and caregiver characteristics, but also by differences in mental health service provision.

Aims To analyse whether family burden is affected by national differences in the provision of mental health services.

Method Patients with schizophrenia and their key relatives were examined in Germany (n=333) and Britain (n=170). Differences in family burden in both countries were analysed with regression models controlling for patient and caregiver characteristics.

Results Family burden was associated with patients’symptoms, male gender, unemployment and marital status, as well as caregivers’coping abilities, patient contact and being a patient’s parent. However, even when these attributes were controlled for, British caregivers reported more burden than German caregivers.

Conclusions National differences in family burden may be related to different healthcare systems in Germany and Britain. Support for patients with schizophrenia may be shifted from the professional to the informal healthcare sector more in Britain than in Germany.

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Risk factors for burn-out in caregivers of stroke patients, and possibilities for intervention

OBJECTIVE: To identify which caregivers of stroke patients living at home experience the highest levels of strain and are at risk of burn-out, and to investigate how support for caregivers of stroke patients could best be organized, and when this support should be offered.

DESIGN AND SETTING: Caregivers of stroke patients were recruited in four regions of the Netherlands. A total of 212 caregivers were interviewed. Multiple stepwise regression analysis was performed to determine the effects of patient and caregiver characteristics, resources, coping strategies and duration of the caregiver role on caregiver strain, mental well-being and vitality.

SUBJECTS: The majority of the caregivers were female spouses. Their mean age was 64 years, and their socioeconomic status middle class. Stroke had occurred about 3.5 years ago on average.

MAIN OUTCOME MEASURES: The following main outcome measures were used: the Caregiver Strain Index, and two scales of the Short Form-36 to measure caregivers' mental well-being and vitality.

RESULTS: Severe cognitive, behavioural and emotional changes in the patient constitute the main risk factors for caregiver burn-out. Women, younger caregivers and caregivers in poor physical health were also identified as risk groups. Caregivers with high perceived self-efficacy, satisfied with social support, and frequently using the coping strategy confronting, experience less strain, higher mental well-being and greater vitality. Duration of the caregiver role does not influence caregivers' strain, mental well-being or vitality.

CONCLUSIONS: Women, younger caregivers, caregivers in poor physical health, and caregivers of patients with severe changes are at risk of burn-out. Support programmes should focus on self-efficacy, social support, and the coping strategy confronting. No specific moment could be identified at which support programmes should be offered.

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Caregivers of older clients with severe mental illness: Perceptions of burdens and rewards

Approximately one million older persons have a severe mental illness (SMI) and this number is expected to double in the coming decades. While research studies have examined the experiences of family members of younger persons with SML, very little is known about caregivers of older SMI clients. This study examined the characteristics, burdens, and rewards of 60 caregivers of older SMI clients using a modified version of family caregiver scales of Tessler, Fisher, & Gamache (1992). Hierarchical linear regression analyses indicated that increased client symptoms, higher levels of help provided, increased caregiver income, and knowledge about the care recipient's diagnosis were predicative of caregiver burden. Decreased number of client symptoms, care recipient being female, and greater experience of the presence of God predicted caregiver rewards. Implications of these findings are discussed. 

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Factors associated with caregiver burden in heart failure family caregivers

Fifty caregivers and 41 heart failure patients participated in a study examining the association of caregiver characteristics and the caregiving environment on caregiver burden. Using a cross-sectional design, caregivers were interviewed face-to-face using a caregiver characteristic/demographic tool designed for this study, the Centers for Epidemiological Studies Short Depression Scale, the Caregiver Reaction Assessment questionnaire, and the New York Heart Association Functional Classification Guide to obtain the caregiver's perception of patient disease severity. Patient medical records were assessed following caregiver interviews for patient demographics, comorbidities, and ejection fraction percentages. Significantly higher levels of burden were found among Caucasian caregivers, those caring for other relatives besides the patient, unemployed caregivers, and single- versus two-family caregivers (respite caregiving). Fifty-one percent of the variance in caregiver burden was accounted for by the variables caregiver advanced age, higher caregiver hours, more caregiver physical health problems, higher levels of caregiver depressive symptoms, and more patient comorbidities. This article concludes with implications for nursing practice and future research.

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The Perseverance Time of Informal Carers of Dementia Patients: Validation of a New Measure to Initiate Transition of Care at Home to Nursing Home Care

Background: Health care systems aim to involve as much informal care as possible and dementia patients prefer to stay home as long as they can. In this context, perseverance time (Pt)—the period that the informal carer indicates to be able to maintain current care if the situation remains stable—is an important concept. Objective: The aim of this study was to introduce the concept Pt and validate it in a sample of informal carers of dementia patients living at home. Methods: Data were collected from 223 informal carers of dementia patients. Convergent validity was assessed by looking at associations of Pt with validated instruments for measuring subjective burden (CSI, CarerQol-7D, and SRB) and happiness (CarerQol-VAS). Content validity was evaluated by performing multivariate correlations between Pt and characteristics of dementia patients, informal carers, and care situations. The Medical Ethics Committee of Utrecht MC advised positively about the study protocol. Results: Correlation coefficients between Pt and the measures of burden CSI, SRB, and CarerQol-VAS were −0.46, −0.63, and 0.23 (p < 0.01), respectively. Health of dementia patient, informal carer living apart from the patient, and male gender of caregiver were positively associated with Pt; need for supervision, intensity of informal care provision, and reductions in working hours and hobbies in order to be able to provide care were negatively associated. Conclusions: Pt is helpful in monitoring need for support and planning the transition of care from home to nursing home. This study provides a first indication of its validity, but replication is necessary.

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Unpaid carers' access to and use of primary care services

General medical practitioners (GPs) and members of the primary care team have a pivotal role in supporting unpaid carers in their caring role and helping them to maintain their own health and well-being. This paper investigates the difference that caregiving makes to individuals’ access to and use of GP and primary care services. It is based on longitudinal analysis of carers’ contacts with GPs, and a review of the literature including evaluations of measures to improve primary-care-based support for carers. Men increase their consultation rates with GPs when taking on a caring role. In contrast, women who look after someone in the same household and carry heavy caring responsibilities have relatively less contact with GPs than expected. According to the literature, carers report a range of difficulties accessing primary health care. A five-fold typology is described covering barriers arising from: professional responses to the carers’ role; the way services are organized and delivered; language or culturally held beliefs and practices; carer or care recipient characteristics; and unmet information needs. Various measures to improve carers’ access to primary care have been introduced to overcome these barriers, but robust evidence of cost and utility is required to judge their acceptability and effectiveness for both carers and GPs. Although good practice guides, quality standards and evaluation tools are available to help improve primary care support for carers, further investigation of carers’ help-seeking for health care, and the factors involved, is required to underpin the prospects for developing a genuine partnership between unpaid carers and health professionals.

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Dementia in families with a Turkish migration background: Organization and characteristics of domestic care arrangements

Backround: Until recently public health and health services research has not been concerned with people suffering from dementia with a Turkish migration background as a priority. There is little evidence about the situation of this population; however, it is known that these individuals almost always live with their families and are cared for by their families generally without seeking professional support. The aim of this study was to gain insight into the organization and characteristics of home-based care arrangements for people suffering from dementia with a Turkish migration background from the family carer’s perspective.

Methods: Interviews with seven family carers. The principles of the grounded theory served as a framework for data analysis.

Results: Unconditional commitment to caring for a family member with dementia was identified as the main characteristic of care arrangements in families with a Turkish migration background. Dementia is not a factor that has an impact on the decision of families to assume care responsibility for an affected family member and there is a lack of knowledge about dementia in general. There are various inhibiting factors for the utilization of formal services and the family carers in this sample complained that the available services are not culturally sensitive.

Conclusion: There seems to be an extensive need for information and counselling regarding care dependency and dementia among the Turkish community. To provide personal-centred care and relief to these families in the future, efforts should be made to adapt the current care system to the specific needs and demands of this population. Cultural sensitivity in general and individual subjective needs of persons with a Turkish migration background affected by dementia should be taken into account.

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Reaching out or missing out : approaches to outreach with family carers in social care organisations

Outreach is advocated as a way of improving the uptake of services among underserved populations and of filling the gaps between mainstream services and the populations they are intended to support. Despite the policy emphasis on providing better help for family carers, research consistently shows that many of those providing unpaid care to a family member or friend report difficulties in finding out about the assistance to which they are entitled. This article presents results from a concurrent mixed-methods study, which aimed to describe different ways of working with family carers in adult social care departments and to collect the views of a range of stakeholders about the advantages and disadvantages of the approaches that were identified. A total of 86 semi-structured face-to-face interviews were undertaken with a purposive sample of funders, carers' workers, representatives of voluntary organisations and family carers based in four contrasting localities. An email survey was sent to all local councils in England with social care responsibilities and resulted in a 53% response rate. Data collection took place in 2012, with a small number of interviews being completed in 2011. Our approach to data analysis combined methodological, data and theoretical triangulation. The findings presented here mainly draw on the interview data to highlight the different models of outreach that we identified. The article highlights important differences between outreach and the provision of information. It concludes that organisations providing support for carers need to consider the advantages and disadvantages of different models of outreach as they develop carers' support and the extent to which different models might be more effective than others in reaching particular types of carer.

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Does country influence the health burden of informal care? An international comparison between Belgium and Great Britain

The aim of this paper is to determine whether the association between the provision of informal care and the health status of caregivers is affected by the country of residence. We focus on two European countries, Belgium and Great Britain, and develop a methodology, which consists of matching a subset of areas from Britain with areas in Belgium that are demographically and socioeconomically similar. These pairs of areas are then used as fixed effects in logistic regressions of poor health. This allows us to take into account the influence of area type on health and to remove the influence of these local contextual characteristics from the estimated country effects. Results suggest that, although caregiving is more prevalent in Britain, the health burden associated with heavy caregiving activities is lower in Britain than in Belgium. This may be explained by the better targeting of long-term home care policies towards more severely dependent patients in Britain than in Belgium.

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Determinants of the caregiver's appraisal in the context of caregiving

This article seeks to examine the factors affecting the caregiver's appraisal of caring for a mentally ill relative. Two hundred and ten caregivers attending to a family member with chronic mental illness in India were interviewed for the study. the results of path analysis indicate burden experienced in the context of caregiving, patient's illness characteristics, and kinship support to be the most significant factors contributing to the caregiver's appraisal of the caregiving experience. The implications of the findings are summarised.

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Characteristics and contributions of non-kin carers of older people: a closer look at friends and neighbours

Research on informal care-giving has largely neglected the contributions of non-kin carers. This paper investigated the characteristics and contributions of non-kin who care for older adults with a long-term health problem, and investigated friends and neighbours as distinct categories of care providers. Using data from 324 non-kin carers in the 1996 General Social Survey of Canada, this study compared individual and relationship characteristics, care tasks and amount of care provided for the two groups. Interpersonal and socio-demographic characteristics were investigated as mediators of potential differences between friends and neighbours in patterns of care. Results demonstrate that friend and neighbour carers differed on age, marital status, geographical proximity and relationship closeness. Friends were more likely than neighbours to assist with personal care, bills and banking, and transportation. Neighbours were more likely to assist with home maintenance. Friends provided assistance with a greater number of tasks and provided more hours of care per week, suggesting a more prominent role in the care of non-kin than neighbours. Age, income, a minor child in the household, proximity and relationship closeness significantly predicted amount of care provided, and relationship closeness largely explained differences between friends and neighbours. Future research on informal care-giving can build on the findings that distinguish friend and neighbour carers to further discriminate the dynamics of non-kin care.

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The impact of chronic conditions of care recipients on the labour force participation of informal carers in Australia: which conditions are associated with higher rates of non-participation in the labour force?

Background: Little is known about the effects of personal and other characteristics of care recipients on the behaviour of carers. The aim of this study is to examine the association between the main chronic (disabling) condition of care recipients and the likelihood of their (matched) primary carers aged 15–64 years being out of the labour force.

Methods: We conducted a retrospective analysis of cross-sectional data from the Australian Bureau of Statistics 2009 Survey of Disability, Ageing and Carers (SDAC) for people aged 15–64 years. We estimated the rates of exit from the labour force for primary carers and non-carers; rates of chronic disease occurrence for care recipients living with their main carers; odds ratios of primary carers being out of the labour force associated with the main chronic condition of their care recipient who lives with them.

Results: From the 2009 SDAC, we identified 1,268 out of 37,186 eligible participants who were primary carers of a care recipient who lived with them. Of these, 628 (49.5%) were out of the labour force. Most common diseases of care recipients were: back problems (12%); arthritis and related disorders (10%); diseases of the nervous system (such as multiple sclerosis, epilepsy, cerebral palsy) (7.4%); and conditions originating in the perinatal period or congenital malformations, deformations and chromosomal abnormalities (5.1%). When adjusted for age, sex, education and whether have a long term chronic condition of informal carers, the five conditions of care recipients associated with the highest odds of their carers being out of the labour force were: head injury/acquired brain damage; neoplasms, blood diseases, disorders of the immune system; leg/knee/foot/hip damage from injury/accident; dementia, Parkinson’s disease, Alzheimer’s disease; and diseases of the musculoskeletal system and connective tissue (osteoporosis).

Conclusions: This study identifies the type of conditions that have the greatest impact on the labour force participation of informal carers – previously unavailable information for Australia. Australia, like most developed countries, is facing several skills shortages and an ageing population. These governments will need to adopt novel and more wholistic approaches to increase the labour force participation of diverse groups. Informal carers are one such group.

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Caring for Mom and neglecting yourself? The health effects of caring for an elderly parent

We examine the physical and mental health effects of providing care to an elderly mother on the adult child caregiver. We address the endogeneity of the selection in and out of caregiving using an instrumental variable approach, using the death of the care recipient and sibling characteristics. We also carefully control for baseline health and work status of the adult child. We explore flexible specifications, such as Arellano–Bond estimation techniques. Continued caregiving over time increases depressive symptoms and decreases self-rated health for married women and married men. In addition, the increase in depressive symptoms is persistent for married women. While depressive symptoms for single men and women are not affected by continued caregiving, there is evidence of increased incidence of heart conditions for single men, and that these effects are persistent. Robustness checks indicate that these health changes can be directly attributable to caregiving behavior, and not due to a direct effect of the death of the mother. The initial onset of caregiving has modest immediate negative effects on depressive symptoms for married women and no immediate effects on physical health. Negative physical health effects emerge 2 years later, however, suggesting that there are delayed effects on health that would be missed with a short recall period. Initial caregiving does not affect health of married men. Published in 2009 by John Wiley & Sons, Ltd.

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Self and carer perspectives of quality of life in dementia using the QoL-AD

OBJECTIVE: Quality of life (QoL) is one of the most important outcomes in improving well-being in people with dementia (PwD). The primary aim of the present study was to compare self and carer ratings of QoL in PwD and to identify the most important factors influencing self and carer ratings.

METHODS: We conducted a cross-sectional analytic study of 488 dyads using the Quality of Life in Alzheimer's Disease scale, demographics, data on self-rated health, and clinical characteristics.

RESULTS: Higher levels of self-rated health in PwD were associated with higher self-rated QoL after controlling for depression and activities of daily living. When the carer experienced less stress related to caregiving, the PwD reported better QoL. Higher carer-rated QoL was associated with less carer stress, better health for the family carer, and the PwD being of younger age. When carers lived with the PwD, and reported lower levels of depression and better functional ability for their relative, carer-rated QoL was higher.

CONCLUSIONS: The self-rated health of PwD and carers influences the ratings they make of the QoL of the PwD indicating that it is an important influence on QoL in this population. Copyright © 2014 John Wiley & Sons, Ltd.

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Determinants of unmet needs among Slovenian old population

Background: Population ageing has significant effects on societies. The organization of care for dependent old people is one of the key issues for ageing societies. The majority of care for homebound dependent old people in Slovenia is still performed by informal carers, even though the use of formal services has been increasing over the last 20 years. The proportion and characteristics of people with unmet needs are important for the development of long term care social policy.

Method: The SHARE (Survey of Health, Ageing and Retirement in Europe) survey was used to assess the determinants of care arrangements and of unmet needs of the aging population in Slovenia. Multinomial regression analysis was used to evaluate individual and contextual determinants of care arrangements and unmet needs.

Results: The proportion of older people with unmet needs is 4%. As expected, “needs” (Functional impairment OR=4.89, P=0.000, Depression OR=2.59, P=0.001) were the most important determinant, followed by the predisposing factor “age” (age OR 1.15, P=0.000) and two enabling factors, namely:“community setting and “availability of informal care within household” (Urban areas OR=.47, P=0.021; Household size 3+ OR=2.11, P=0.030).

Conclusion: This study showed that there are a proportion of older people in Slovenia with severe needs for care, which are being unmet. As shown by the importance of enabling factors, social policy should encourage the development of formal services in rural areas and elaborate policy measures for informal carers.

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Is caring a health hazard? The mental health and vitality of carers of a person with a disability in Australia

OBJECTIVE: To compare the mental health and vitality of people caring for a family member with a disability with those of the general population. Second, to identify factors experienced by carers that put them at risk of poor mental health and vitality.

DESIGN: Cross-sectional design where logistic and multiple regression analyses were used to compare rates of mental health problems and vitality between carers and the general population while controlling for demographic characteristics. In addition, logistic and multiple regression using data from the survey of carers were used to identify risk factors for poor mental health and vitality that were particular to caregiving.

PARTICIPANTS AND SETTING: A randomly selected representative survey of 1002 carers from the Australian Centrelink administrative database (June 2006) who received government payments to care for a person with a disability or severe medical condition, or a person who was frail aged. A sample of 10,223 non-carers was drawn from the fourth wave of the Household, Income and Labour Dynamics in Australia Survey, a nationally representative household panel survey (August 2004 to February 2005).

MAIN OUTCOME MEASURES: Mental health and vitality as measured by the Medical Outcomes Study 36-item Short-Form Health Survey.

RESULTS: Compared with the general population, carers were at significantly greater risk of having a mental health problem and lower levels of vitality, even after controlling for demographic characteristics. For carers, the risk factors for poor mental health and lower levels of vitality were caring for a person with a disability with higher care needs, experiencing greater levels of financial stress, lower levels of support and worse family functioning.

CONCLUSION: Carers are at greater risk of mental health problems and lower energy levels than the general population.

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Carer mentoring: A mixed methods investigation of a carer mentoring service

Background: Worldwide with ageing populations, the numbers of informal carers are likely to increase. Although being a carer is often satisfying, it can be challenging and require support. Volunteer-provided carer mentoring services where carers are supported by volunteer mentors are one such intervention. However, little is known about the impact of mentoring, carers’ experiences or the mechanisms by which these schemes may work. Previous quantitative findings have been inconsistent suggesting a different, mixed methods approach using qualitative and quantitative methods may be valuable.

Objectives: Objectives were to explore two main questions: whether mentoring had a significant positive effect on carer mentees in terms of mental health, quality of life and confidence in caring and to explore how carers experience and perceive the process and benefits of mentoring. In addition, the study aimed to suggest possible mechanisms to understand how mentoring may benefit carers.

Methods and setting: Mixed methods (quantitative questionnaires and depth interviews) investigated an established mentoring service provided by volunteer mentors. During the study period, 28 carers received mentoring. Of these, 25 carers completed structured questionnaires both before and after mentoring, to determine whether mentoring had an impact on carer wellbeing and confidence in caring. Depth interviews were also undertaken with 11 purposively sampled carers to explore how carers experience and perceive the process and benefits of mentoring.

Results: Statistically significant improvements in carer anxiety (p < 0.001), depression (p < 0.001), quality of life (p = 0.02) and confidence in caring (p < 0.05 on all dimensions except one) were found. Depth interviews revealed that carers were very positive about mentoring and highlighted many benefits. Findings suggested emotional support, information provision, problem solving facilitation and gaining new perspectives may be mechanisms by which mentoring achieves positive outcomes. Mentor personal characteristics, experiences and training are possible facilitators of the process.

Conclusions: Carer mentoring services can be a valuable form of carer support that falls somewhere between formal and informal support. Adopting mixed methods permitted greater understanding of how mentoring may benefit carers and has implications for mentor recruitment and training. The fact that mentoring can be provided by volunteer mentors makes it an attractive, potentially cost-effective means of supporting carers.

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Why do families relinquish care? An investigation of the factors that lead to relinquishment into out-of-home respite care

BACKGROUND: Families/carers relinquishing the care of family members with a disability into the care of out-of-home respite facilities is an under-researched area in the disability field. With this in mind, the aim of this study was to explore the factors that lead to families relinquishing care, the potential early indicators that families are considering relinquishment; the factors that may prevent relinquishment and the outcomes for families/carers after relinquishment occurs. METHOD: Thirty-two client files (of individuals for whom families have relinquished their care in a defined 12-month period) were reviewed for information around their relinquishment into out-of-home respite care facilities for an extended stay. Staff members involved with these families (a total of 17) were also interviewed to provide more information. RESULTS: A thematic analysis of the results found that the factors that led to relinquishment could be categorised into: (1) characteristics inherent to the individual with intellectual disability; (2) characteristics inherent to the family/carer; and (3) characteristics associated with the support context that the carer/family is currently experiencing. It was also found that families'/carers' experienced positive outcomes after relinquishment had occurred; however, feelings of guilt and mourning were initially felt. CONCLUSIONS: Extra supports (e.g. increased respite care, planning for movement of the family member into out-of-home permanent accommodation and case management) and positive interventions such as parent training were highlighted as potential strategies to achieve more lasting benefits from short-stay out-of-home respite care.

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British Indian carers of stroke survivors experience higher levels of anxiety and depression than White British carers: findings of a prospective observational study

Carers of stroke survivors face significant burdens, and increased carer strain has negative implications for both the stroke survivor and the carer. In a prospective cohort of White British and British Indian stroke survivors and their carers, we report the incidence of carer strain in each ethnic group, describe patient and carer characteristics, and identify predictors of increased carer strain. Multidimensional outcome measures were used to assess the physical and cognitive function in stroke survivors at one month and 3-6 months from stroke onset. Levels of car strain were assessed at the same time points using the Carer Strain Index and the Hospital Anxiety and Depression Scale. Statistical significance for difference in patient and carer characteristics between White British and British Indian groups was assessed. There were no differences in levels of carer strain between the two ethnic groups. These findings will inform future research, and in turn, may help to guide population-targeted interventions aimed at reducing carer strain.

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Quality of life and burden in caregivers for patients with Parkinson's disease: concepts, assessment and related factors

Caregivers of Parkinson's disease patients face responsibilities stemming from providing assistance to a person, usually a family member, who suffers a progressively disabling disease characterized by both motor and nonmotor symptoms. These circumstances impact on the physical, emotional and psychosocial aspects of the caregivers'lives and, therefore, on their quality of life (QoL). Studies have identified factors related to caregivers'global QoL and health-related QoL, causing caregivers distress and affecting their QoL. These factors are related to patients'and caregivers'characteristics and may be classified as sociodemographic, psychological and disease related. Caregiver's burden refers to the multiplicity of difficulties ensuing as a consequence of caring, including, for example, health problems, modification of habits, economic loss and QoL deterioration. Therefore, burden-related factors are also briefly reviewed. The implementation of effective interventions to preserve the caregiver’s wellbeing and allow the patients to remain at home and be properly assisted is a pragmatic consequence of this knowledge.

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Caregiver's burden, depression and support as predictors of post-stroke depression: a cross-sectional survey

To examine the effects of caregiver's burden, depression, and support on post-stroke depression (PSD), cross-sectional data were obtained from an epidemiologic survey of 225 stroke survivors and their caregivers living in Seoul, Korea. Multivariate analyses showed that, taking the clinical status of patients into account, caregiver's burden, depression and support were related to higher PSD. Perceived burden exerts adverse effects on PSD through its influence on the depression in caregivers. Hence, the care of stroke survivors that incorporates the care of caregivers is likely to reduce the risk of post-stroke depression in patients.

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Coping as a caregiver: A question of strain and its consequences on life satisfaction and health-related quality of life

A majority of us will at some point in our lives take care of family members, relatives and friends in need of assistance. How will this affect us? Strain related to life satisfaction (LS) and health related quality of life (HRQoL) among caregivers aged 60 years and older has not been previously studied.

Objectives: The main objective was to describe characteristics of non-caregivers (n = 2233) and caregivers (n = 369). Further objectives were to examine differences in HRQoL and LS between caregivers and non-caregivers, and between caregivers stratified by level of strain.

Methods: We analyzed the differences in socio-demographics, social participation, locus of control and symptoms between groups. HRQoL was assessed by Short Form Health Survey (SF-12/PCS and MCS). LS was measured by the Life Satisfaction Index-A (LSI-A).

Results: Caregivers were younger, had more years of formal education, more often cohabiting and relied less on powerful others than non-caregivers. One hundred and thirty-three (36%) caregivers reported high strain. In a three-group comparison including non-caregivers and caregivers stratified for strain, high strain was associated with lower SF12-PCS, SF12-MCS and LSI-A (0.014, <0.001 and <0.001, respectively).

Conclusion: High strain affects caregivers’ HRQoL and LS in a negative way.

Practice: It is important for the health care sector to consider the possibility that symptoms in a person acting as a caregiver can be related to high perceived strain.

Implications: A general policy program aiming to identify caregivers and their needs for support is much needed.

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Psychometric properties of carer-reported outcome measures in palliative care: A systematic review

Background: Informal carers face many challenges in caring for patients with palliative care needs. Selecting suitable valid and reliable outcome measures to determine the impact of caring and carers’ outcomes is a common problem.

Aim: To identify outcome measures used for informal carers looking after patients with palliative care needs, and to evaluate the measures’ psychometric properties.

Design: A systematic review was conducted. The studies identified were evaluated by independent reviewers (C.T.J.M., M.B., M.P.). Data regarding study characteristics and psychometric properties of the measures were extracted and evaluated. Good psychometric properties indicate a high-quality measure.

Data sources: The search was conducted, unrestricted to publication year, in the following electronic databases: Applied Social Sciences Index and Abstracts, Cumulative Index to Nursing and Allied Health Literature, The Cochrane Library, EMBASE, PubMed, PsycINFO, Social Sciences Citation Index and Sociological Abstracts.

Results: Our systematic search revealed 4505 potential relevant studies, of which 112 studies met the inclusion criteria using 38 carer measures for informal carers of patients with palliative care needs. Psychometric properties were reported in only 46% (n = 52) of the studies, in relation to 24 measures. Where psychometric data were reported, the focus was mainly on internal consistency (n = 45, 87%), construct validity (n = 27, 52%) and/or reliability (n = 14, 27%). Of these, 24 measures, only four (17%) had been formally validated in informal carers in palliative care.

Conclusion: A broad range of outcome measures have been used for informal carers of patients with palliative care needs. Little formal psychometric testing has been undertaken. Furthermore, development and refinement of measures in this field is required.

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Clinical notes for informal carers in palliative care: recommendations from a random patient file audit

Although palliative care aims to support family members and informal carers, current evidence suggests that high levels of unmet need persist, and that this population is challenging to work with. This study aimed to 1) measure the proportion of patients that have an informal carer, 2) describe the clinical notes data on existing needs and coping, 3) measure the completeness of assessment data recording, 4) appraise the utility of existing informal carers’ sections in the patient files, and 5) make recommendations for improvement. An audit was conducted reviewing 145 closed patient files. Of these, 100 had identifiable informal carers (69.9%). Although patient data was complete, data was severely lacking on their informal carer. Diverse coping strategies were described, and the primary need was for finance and advice about state welfare payments (n = 64). The findings suggest a need for files to identify and record informal carers as potentially distinct from family members, promote assessment data completion for informal carers on a par with that of patients, and to develop systematic approaches to systems that maximize utility and incorporate multiprofessional input into the development of clinical notes.

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Effects of family caregivers on the use of formal long-term care in South Korea

Aim: We investigated whether the presence and characteristics of a family caregiver affect the use of formal long-term care under the new Korean long-term care system.

Background: In July 2008, Korea introduced public long-term care insurance, a form of social insurance, in order to cope with the reality of the growing elderly population and the increasing demand for long-term care.

Methods: The family caregivers of 271 applicants for long-term care insurance who had a caregiver and 36 applicants without a caregiver living in one city participated in this cross-sectional study. Data were collected from November 2010 to June 2011 using self-report questionnaires. Variables included the applicant's gender; age; physical and cognitive function; type of long-term care used; presence and type of family caregivers; caregiver's gender, age, education level, marital status, and employment status; and service use covered by long-term care insurance. Logistic multiple regression was used.

Results: The effect of the presence and characteristics of a family caregiver on the use of a long-term care facility was significant. A nursing home was used for care more frequently when the applicant had no family caregiver. An elderly subject who had a spouse as a caregiver used home healthcare services more often than nursing home services.

Conclusion: The decision to use formal services may depend not only on the care level required by the applicant, but also on the presence and type of caregivers. To successfully implement the new long-term care insurance system, consideration of the caregiver situation should be included in policy development.

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Carers in the region: a profile of the East Midlands

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the East Midlands region. In 2001 there were 433,912 carers in the East Midlands region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carer’s health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the East Midlands region.

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Sustained informal care: the feasibility, construct validity and test–retest reliability of the CarerQol-instrument to measure the impact of informal care in long-term care

This study investigated the feasibility, validity and reliability of the Carer Quality of Life (CarerQol) instrument among informal carers of long-term care users. CarerQol-VAS measured the impact of informal care by assessing happiness, and CarerQol-7D described burden dimensions. Participants included 100 informal carers of patients obtaining day care or living in a long-term care facility in the Netherlands. Construct validity assessed the extent to which differences in background characteristics were reflected in happiness scores with univariate and multivariate statistics. Intraclass Correlation Coefficients were used to assess reliability. Results indicated that CarerQol-VAS was positively associated with caregivers’ age and health, and negatively with SRB score. The percentage of complete agreement of CarerQol-VAS between the measure moments was 60% and between 76% and 96% for CarerQol-7D. κ value and ICC of CarerQol-VAS were 0.52 and 0.86, and ranged between 0.55 and 0.94 for CarerQol-7D. Conclusion: The CarerQol measures the impact of informal care among carers of LTC users in a feasible, valid and reliable way.

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Understanding the use of respite services among informal carers

Objective: To examine the use of respite services among carers of non-institutionalised individuals aged 15 and over with either profound or severe disabilities. Methods: Based on data collected from the Australian Survey of Disability, Ageing and Carers in 2003, the investigation evaluated the statistical significance of a number of carer and recipient characteristics on the likelihood of the use of respite services. Further analysis assisted in identifying the support most desired by the majority of carers (88.6%, n=243690) who have never used respite. Results: The results revealed that social and cultural factors played a critical role in the receipt of respite services. Family relationships were important. Just under one-fifth of all primary carers most preferred more financial assistance in their role as caregiver. After controlling for confounding variables it was found that, compared with other forms of assistance, the desire for an improvement in the primary carers? own health was more likely among non-respite users. This may reflect the carers? preference to improve their own capacity to service the recipient rather than rely on others outside the household. Conclusions: Since the recipients under investigation typically possess core communication restrictions and highly individualised needs, it is speculated that carers perceive family members as better able to interpret and meet the sporadic and individualised care demands of recipients. Implications: Given the low usage of respite services among primary informal carers, policy makers and health organisations need to dispel the ?one size fits all? approach to support services for households.

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Feelings of rewards among family caregivers during ongoing palliative care

Palliative family caregivers appear to experience the rewards of caregiving concurrent with burdens and negative feelings. Relatively few studies have attended to the positive and rewarding aspects in palliative family caregiving. In addition, most studies on rewards are retrospective and examine the experiences of bereaved family caregivers. The present study aimed at describing feelings of reward among family caregivers during ongoing palliative care. A further aim was to compare the experience of rewards in relation to sex and age.

Methods: The sample consisted of 125 family caregivers and took place in three specialist palliative care units and one hematology unit. Participants answered a questionnaire including demographic background questions and the Rewards of Caregiving Scale (RCS). Descriptive statistics were employed to describe characteristics of the participants and the level of rewards. A Mann–Whitney U test was used to compare differences between groups of different sex and age.

Results: Palliative family caregivers reported general high levels of reward. The greatest source of rewards involved feelings of being helpful to patients. This was closely followed by giving something to patients that brought them happiness and being there for them. The smallest sources of rewards were related to personal growth, self-satisfaction, and personal meaning. There was also an association between rewards and age but not between men and women.

Significance of results: Family caregivers experienced the rewards of caregiving during ongoing palliative care despite their unique and stressful situation. Feelings of reward seem to be about handling a situation in a satisfying way, feeling competent and confident to take care of the patient and thereby feeling proud. Support could preferably be designed to improve a family caregiver's ability to care and to facilitate the positive aspects and rewards of caregiving and focus on strengths and resources.

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Networks of informal caring: a mixed-methods approach

Care for older people is a complex phenomenon, and is an area of pressing policy concern. Bringing together literature on care from social gerontology and economics, we report the findings of a mixed-methods project exploring networks of informal caring. Using quantitative data from the British Household Panel Survey (official survey of British households), together with qualitative interviews with older people and informal carers, we describe differences in formal care networks, and the factors and decision-making processes that have contributed to the formation of the networks. A network approach to care permits both quantitative and qualitative study, and the approach can be used to explore many important questions.

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Service use in family caregivers of persons with dementia in Belgium : psychological and social factors

This study aims to investigate whether selected social and psychological characteristics of family caregivers of persons with dementia are related to community-based service use in Belgium. Two aspects were distinguished in service utilisation: volume (number of contacts) and diversity (number of services). Within a selected region, dementia caregivers were traced via the detection of persons with dementia known to community health or social services. A probability diagnosis was made with the Geriatric Mental State and the computer algorithm AGECAT. Family caregivers of persons with dementia (N = 168) were interviewed at home by means of a structured questionnaire. Data were analysed with multiple regression analysis. Co-residence, a positive attitude towards home service use, and increased problem-solving coping were found to be direct predictors of increased diversity of services used, whereas a lower burden of behaviour problems, living apart, and increased avoidance coping were found to be direct predictors of increased volume of service use. Care recipients’ behaviour problems and functional status were not found to be related to service use. The results suggest that social and psychological factors have a larger impact on service use in family caregivers of persons with dementia, compared to objective or subjective burden. Interventions to increase awareness of relevant services, to improve attitudes towards their use and support problem-solving coping in family caregivers may be considered to increase the use of appropriate services.

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Psychological Symptoms, Illness-Related Concerns and Characteristics of Relatives of Turkish Patients with Cancer

Being the relative of a patient with cancer is often very stressful, and there is a need for information, support, and help for carers. It is also important for the relative to know that the patient receives care of a good quality. This research investigated the relationships between sociodemographic characteristics, illness related concerns and psychological symptom scores of relatives of the patients with cancer in an inpatient oncology clinic of the GATA. A Questionnaire and Symptom Distress Check List (SCL-90-R) was administered to 106 relatives of in-patients and statistically significant relationships were found between the following characteristics and psychological symptom scores: sex, education level, duration of stay in hospital, having emotional problems and having financial problems. It was established that most problems of relatives were psychological and financial (p<0.05). Cancer is still a great source of fear and it is evident that offering psychosocial support at a professional level in addition to medical treatment will yield more favorable results for both patients and their relatives.

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Women caring for disabled parents and other relatives: Implications for social workers in the health services

Caring for an ill or disabled relative is a life experience shared by many women. Based on data from a representative sample of women in Israel, this study examined the demographic, employment, and health characteristics of women caregivers, focusing on the extent of care provided and its effect on the caregiver's physical and mental health. Using the conceptual framework of caregiving-related stress, we compared women who care for a parent, and women who care for another relative. The study found more instrumental difficulties, which lead to greater burden, among women who care for a disabled relative who is not a parent. Furthermore, larger proportions of women caring for a disabled relative who is not a parent report depressive mood symptoms, poor health status, and the need for psychological counseling. The findings suggest that formal service providers, chiefly social workers, may better support women caregivers once they are aware of the needs arising from disparate contexts of care. 

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Attitudes of Family and Professional Care-Givers towards the Use of GPS for Tracking Patients with Dementia: An Exploratory Study

This study examined the attitudes of family and professional care-givers towards the use of advanced electronic tracking such as GPS (Global Positioning Systems) and RFID (Radio Frequency Identification) for elderly people with dementia. The study revealed four principal findings. First, care-givers' views ranged from feeling obligated to use the tracking device for the sake of patients' safety through support of the use of the device for the sake of the care-givers' peace of mind and restricted support, to objection to the use of the device and respect for a person's autonomy. Second, family care-givers showed higher support for the use of GPS and RFID both for their own peace of mind and for the safety of the elder in their care. Professionals attached higher value to respect for a person's autonomy and restricted support for using GPS and RFID. Third, both family and professional care-givers agreed that the decision on tracking dementia patients should be an intra-family issue. Fourth, family care-givers attached more importance to the tracking device's characteristics and design, thus emphasizing that the tracking device must be considered by them as ‘user-friendly’. The implications of the results for social work are also discussed.

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Attitudes of cancer patients, family caregivers, oncologists and members of the general public toward critical interventions at the end of life of terminally ill patients

Background: Whereas most studies have focused on euthanasia and physician-assisted suicide, few have dealt comprehensively with other critical interventions administered at the end of life. We surveyed cancer patients, family caregivers, oncologists and members of the general public to determine their attitudes toward such interventions.

Methods: We administered a questionnaire to four groups about their attitudes toward five end-of-life interventions — withdrawal of futile life-sustaining treatment, active pain control, withholding of life-sustaining measures, active euthanasia and physician-assisted suicide. We performed multivariable analyses to compare attitudes and to identify sociodemographic characteristics associated with the attitudes.

Results: A total of 3840 individuals — 1242 cancer patients, 1289 family caregivers and 303 oncologists from 17 hospitals, as well as 1006 members of the general Korean population — participated in the survey. A large majority in each of the groups supported withdrawal of futile life-sustaining treatment (87.1%–94.0%) and use of active pain control (89.0%–98.4%). A smaller majority (60.8%–76.0%) supported withholding of life-sustaining treatment. About 50% of those in the patient and general population groups supported active euthanasia or physician-assisted suicide, as compared with less than 40% of the family caregivers and less than 10% of the oncologists. Higher income was significantly associated with approval of the withdrawal of futile life-sustaining treatment and the practice of active pain control. Older age, male sex and having no religion were significantly associated with approval of withholding of life-sustaining measures. Older age, male sex, having no religion and lower education level were significantly associated with approval of active euthanasia and physician-assisted suicide.

Interpretation: Although the various participant groups shared the same attitude toward futile and ameliorative end-of-life care (the withdrawal of futile life-sustaining treatment and the use of active pain control), oncologists had a more negative attitude than those in the other groups toward the active ending of life (euthanasia and physician-assisted suicide).

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Legislative scrutiny: Care Bill: eleventh report of session 2013-14: report, together with formal minutes

The Care Bill was introduced into the House of Lords on 9 May 2013, received its Third Reading on 29 October 2013 and then proceeded to the House of Commons where it received its Second Reading on 16 December 2013. Commons’ Committee stage began on 9 January 2014 and is due to end on 4 February. This Report examines the most significant human rights issues in the Bill. 

In this report, the Joint Committee on Human Rights examines the most significant human rights issues in the Care Bill, which must ensure that all providers of publicly arranged or paid-for social care services are bound by the Human Rights Act. The Bill provides an opportunity to fill the gaps in human rights protection for all those receiving publicly arranged or paid-for care, including in their own home and in residential care homes under arrangements made other than under the National Assistance Act 1948. The opportunity to legislate to this effect must not be missed by Parliament. The Committee recommends an amendment to the Bill which would close this significant gap in human rights protection for people receiving publicly arranged or paid-for care. Amendments should be made to either the Care Bill or the Children and Families Bill (debated in the House of Lords on 27 January 2014), to give parent carers of disabled children equivalent rights to a needs assessment for support.

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The 'visibility' of unpaid care in England

Summary: Social work practice is increasingly concerned with support not just for service users but also for unpaid carers. A key aspect of practice is the assessment of carers’ needs. The Government has recently passed legislation that will widen eligibility for carers’ assessments and remove the requirement that carers must be providing a substantial amount of care on a regular basis. This article examines which carers are currently ‘visible’ or known to councils and which are not, and uses the results to examine the likely effects of the new legislation. In order to identify the characteristics of carers known to councils, the article uses large-scale surveys, comparing the 2009/10 Personal Social Services Survey of Adult Carers in England and the 2009/10 Survey of Carers in Households in England.

Findings: Carers who are known to councils provide extremely long hours of care. Among carers providing substantial care who are known to councils, the majority care for 100 or more hours a week. The focus of councils on carers providing long hours of care is associated with a number of other carer characteristics, such as poor health.

Applications: Councils' emphasis on the most intense carers is unlikely to be attributable solely to the current legislation. Therefore, dropping the substantial and regular clauses alone will not necessarily broaden access to carers' assessments and, in order to achieve this, considerable new resources may be needed. How far these resources are available will determine the extent to which practitioners can broaden access to carers' assessments.

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Does caring for your spouse harm one's health? Evidence from a United States nationally-representative sample of older adults

The purpose of this article is to investigate the relationship between spousal care-giving and declines in functioning and self-rated health among older care-givers. The authors used data from the 2000 and 2002 waves of the United States Health and Retirement Study, a biennial longitudinal survey of a nationally representative cohort of adults aged 50 or more years. Two outcomes were examined, declines in functioning and declines in self-rated health. Care-givers were classified into three groups: no care-giving, less than 14 hours of care-giving per week, and 14 or more hours care-giving per week. To assess declines in functioning, two summary scores were created of limitations in basic and instrumental Activities of Daily Living. To assess declines in self-rated health, we compared responses from 2000 and 2002. In the fully adjusted models, care-giving hours did not have an independent effect on declines in functioning or self-rated health. The relationship between care-giving hours and declines in functioning and self-rated health is probably attributable to socio-demographic characteristics, mainly age. The findings suggest that spousal care-giving does not of itself harm functional health or perceived health among older adult care-givers. Understanding the differential effects of these socio-economic characteristics with care-giving hours on health will be useful in promoting the health of older adult care-givers and treating their disorders.

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Survey nonresponse among informal caregivers: effects on the presence and magnitude of associations with caregiver burden and satisfaction

Background: Informal caregiving is becoming more relevant with current trends such as population ageing. However, little is known about nonconsent and nonresponse bias in caregiving research. We investigated nonconsent and nonresponse bias in a sample of informal caregivers who participated in the LifeLines Cohort Study, and were invited for participation in an additional caregiving study.

Methods: We compared socio-demographic characteristics, caregiver health, caregiving situation, and caregiver outcomes of nonconsent and consent caregivers, and nonresponse and response caregivers, on LifeLines data, by using Chi-square tests, Independent Sample T-tests, and Mann-Whitney tests. Furthermore, we examined the influence of nonconsent and nonresponse on the presence and magnitude of the associations between caregiver characteristics and two commonly used caregiving outcomes (caregiver burden and satisfaction). We conducted multinomial logistic regression analyses, including interaction terms with nonconsent and nonresponse.

Results: Within a subcohort of 8443 caregivers, aged >18 years, 5095 caregivers (60 %) gave consent for participation in the caregiving study. Within the subgroup of 2002 caregivers who received the questionnaire, 965 (48 %) responded. Caregivers who were highly involved in caregiving (i.e. high time investment, high caregiver burden), gave more commonly consent to participate, and responded more often to the questionnaire. Nonconsent and nonresponse influenced the associations between caregiver characteristics and caregiver burden for only a few characteristics, mainly indicating the level of caregiving involvement (e.g. time investment, caregiving duration). Especially for caregiver burden, these indicators were stronger for consent and response caregivers than for nonconsent and nonresponse caregivers.

Conclusions: Our findings are important for caregiving research, as they emphasized that participation might not be evenly distributed among caregivers, and that the possibility of nonconsent and nonresponse bias should be considered.

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A longitudinal study of home care clients and their informal carers

The objective of the longitudinal study was to monitor physical and cognitive changes in a population of 330 older people being supported at home by health services. The participants were 75 years and older and classified as having moderate-to-high needs. A total of 210 primary informal carers were recruited to determine their specific needs and how they coped as dependency levels of their care-recipients changed. Data were collected using six different tools. Two questionnaires were mailed out to participating carers. Assessments of care recipients were carried out at three sampling points over the study period. The clients showed a significant increase in physical dependency and an overall increase in cognitive impairment over time. Only 32% of carers lived with care recipients, and changes in dependency, cognitive changes, lack of respite and performing activities of daily living were all major stressors for informal carers. The needs of informal carers are reported and discussed in the context of recommendations of the Commission on the Future of Health Care in Canada.

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Carers in the region: a profile of the South West

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the South West region. In 2001 there were 492,451 carers in the South West region, which is 10% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the South West region.

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Grouping cancer patients by psychosocial needs

This article describes a study in which a systematic classification of cancer patients was produced on the basis of their needs. A series of 380 cancer patients from four hospitals in the North West of England responded to a self-completion questionnaire that included a 48-item inventory of psychosocial needs covering seven needs domains (information, health professionals, emotional and spiritual, identity, practical, support, and child care). Latent class analysis was used to identify differing patterns of psychosocial need. Four patterns of need were identified. The groups differed in both quantityand qualityof patients' expressed needs. Group A had a high level of expressed needs “across the board,” whereas Group D had a low level of expressed needs “across the board.” Group B had high levels of expressed needs in all except the emotional, spiritual, identity, and practical domains, and Group C had low levels of expressed needs in all but the information and health professionals domains. Because the four groups differed by demographic and socioeconomic characteristics, there is scope for developing risk scores to predict these patterns of psychosocial needs in patients with cancer. The dangers and limitations of this approach are discussed.

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Carers in the region: a profile of Yorkshire and the Humber

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the Yorkshire and the Humber region. In 2001 there were 516,546 carers in the Yorkshire and the Humber region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the Yorkshire and the Humber region.

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Longitudinal changes in the amount of informal care among publicly paid home care recipients

Purpose: This study examined how the amount of informal care received by disabled elders changes when they are receiving publicly paid home care, and whether formal service use, disability, caregiving arrangements, and demographic characteristics of older adults predict changes in the amount of informal care. Design and Methods: Hierarchical linear models were estimated, using 3-year data (12 repeated observations) collected from elderly participants (N = 888) in Michigan's Home- and Community-Based Medicaid Waiver Program. Results: The amount of informal care declined in the beginning period when publicly paid home care was received, and then it stabilized. Changes in activities and instrumental activities of daily living and caregiver residence predicted changes in the amount. The living arrangement and age of elders predicted different patterns of change over time. Neither formal service amount nor its change significantly predicted the amount of informal care. Implications:Informal caregivers do not relinquish caregiving when publicly paid home care is available. Expanding community-based long-term care is a means of fostering partnerships between formal and informal caregivers.

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The physical functioning and mental health of informal carers: evidence of care-giving impacts from an Australian population-based cohort

Informal carers represent a substantial proportion of the population in many countries and health is an important factor in their capacity to continue care-giving. This study investigated the impact of care-giving on the mental and physical health of informal carers, taking account of contextual factors, including family and work. We examined health changes from before care-giving commenced to 2 and 4 years after, using longitudinal data from the Household Income and Labour Dynamics in Australia survey. The sample comprised 424 carers and 424 propensity score-matched non-carers. Health was self-assessed, measured with the SF-36 Health Survey Mental Health (MH) and Physical Functioning (PF) scales. Care-giving was classified as non-carer, low (<5 hours/week), moderate (5–19 hours/week) and high (20 or more hours/week). PF and MH change scores were regressed on baseline scores, care-giving, covariates (including work, family and socio-demographic characteristics) and interactions to identify impacts for subgroups. The physical and mental health impacts differed by gender, and care-giving hours and carer work hours were important contextual factors. Deterioration in both PF and MH was worse for females after 2 years and deterioration in MH was worse for males after 4 years. Among carers aged 40–64 years, there was a 17-point decline in PF (P = 0.009) and a 14-point decline in MH (P < 0.0001) after 2 years for female high caregivers working full-time and 9.3 point improvement (P = 0.02) for non-working male high caregivers. Change was not significant for non-carers. The study found that not all carers suffer adverse health impacts; however, the combination of high levels of care-giving with workforce participation can increase the risk of negative physical and mental health effects (particularly in female carers). Working carers providing high levels of care represent a vulnerable subgroup where supportive and preventive services might be focused.

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A comparison of working versus nonworking family caregivers of stroke survivors

Because of the trend toward shorter hospital stays, family caregivers of stroke survivors are expected to accept more responsibility for helping survivors during the subacute recovery process. The caregiver role is associated with negative health outcomes, yet existing literature differs on whether work status is a contributor. The purpose of this secondary analysis was to examine how caregiving affects employment and to compare characteristics of working and nonworking caregivers. Baseline data of family caregivers (N = 132) caring for stroke survivors 3-9 months after stroke and enrolled in a national multisite study were used. Caregiver characteristics of physical health, depression, fatigue, family functioning, and family conflict were measured. A total of 36% of caregivers reduced their work hours, resigned, or retired from their jobs to care for their family member. A larger proportion (n= 25, 66%) of minority caregivers were employed (full time or part time) compared to white caregivers (n = 43, 46%). Caregivers employed full time were younger and in better physical health but were at higher risk for depressive symptoms than nonworking caregivers. Family function and conflict were similar between the groups, but working caregivers received more assistance from other family members. Healthcare professionals and employers can use these findings to assist them with recognizing the needs of employed caregivers and offering support measures to facilitate their dual role.

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Risk factor characteristics in carers who physically abuse or neglect their elderly dependants

This study investigates the prevalence of, and differences in, risk factor characteristics in a sample of two select populations of carers, one of which physically abused their elderly dependants and one of which neglected them. Nineteen carers (nine who had physically abused and 10 who had neglected their elderly relatives), who were referred to clinical psychology by either their general practitioner or their psychiatrist, were invited to take part in this study. A detailed history of risk factors was obtained, including history of alcohol dependency, type and history of mental ill health, history of maltreatment earlier in life, who they were caring for, how long they had been a carer and whether they felt isolated as a carer. Subjects were then given five assessments to determine whether there were any differences between the two groups. These were the Conflict Tactic Scale, Strain Scale, Beck Depression Inventory, Beck Anxiety Inventory and Cost of Care Index. An examination of the risk factors suggests that heavy alcohol consumption and past childhood abuse by fathers were likely to lead to physical abuse. Significantly higher conflict and depression scores were also present in the physical abuse group, while the neglect group had significantly higher anxiety scores. It is suggested that these findings should be incorporated into an assessment of future risk of abuse or neglect by the carer.

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Involvement of a Case Manager in Palliative Care Reduces Hospitalisations at the End of Life in Cancer Patients; A Mortality Follow-Back Study in Primary Care

Background: Case managers have been introduced in primary palliative care in the Netherlands; these are nurses with expertise in palliative care who offer support to patients and informal carers in addition to the care provided by the general practitioner (GP) and home-care nurse.

Objectives: To compare cancer patients with and without additional support from a case manager on: 1) the patients’ general characteristics, 2) characteristics of care and support given by the GP, 3) palliative care outcomes.

Methods: This article is based on questionnaire data provided by GPs participating in two different studies: the Sentimelc study (280 cancer patients) and the Capalca study (167 cancer patients). The Sentimelc study is a mortality follow-back study amongst a representative sample of GPs that monitors the care provided via GPs to a general population of end-of-life patients. Data from 2011 and 2012 were analysed. The Capalca study is a prospective study investigating the implementation and outcome of the support provided by case managers in primary palliative care. Data were gathered between March 2011 and December 2013.

Results: The GP is more likely to know the preferred place of death (OR 7.06; CI 3.47-14.36), the place of death is more likely to be at the home (OR 2.16; CI 1.33-3.51) and less likely to be the hospital (OR 0.26; CI 0.13-0.52), and there are fewer hospitalisations in the last 30 days of life (none: OR 1.99; CI 1.12-3.56 and one: OR 0.54; CI 0.30-0.96), when cancer patients receive additional support from a case manager compared with patients receiving the standard GP care.

Conclusions: Involvement of a case manager has added value in addition to palliative care provided by the GP, even though the role of the case manager is ‘only’ advisory and he or she does not provide hands-on care or prescribe medication.

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The last three months of life of Italian cancer patients. Methods, sample characteristics and response rate of the Italian Survey of the Dying of Cancer (ISDOC)

Study objective: The Italian Survey of the Dying of Cancer (ISDOC) was undertaken to evaluate the experiences of Italian people dying from cancer during their last three months of life in all settings of care. Study design: A two-stage probability sample was used to estimate end-of-life outcomes of about 160 000 Italian cancer deaths. In the first stage, 30 of the 197 Italian Local Health Districts (LHD) were randomly selected after stratification. In the second stage, a fixed proportion of cancer deaths was randomly drawn from each LHD, and 2000 death certificates of patients who died of cancer were identified. The non-professional caregivers were identified and interviewed using a semi-structured questionnaire derived from the Views of Informal Carers - Evaluation of Services (VOICES). Results: Caregivers were successfully identified for 95% of the sample (n = 1900). The caregiver was the child (42.7%), the spouse (36.5%), another family member (17.3%), or a friend (1.5%). Only 3% of the sample had no non-professional support. An interview was obtained for 1289 (64.5%) of the sample, at a median time of 234 days after death (range: 103-374). Higher response rates were associated with home death (67.7%) and with a higher education (>70%). Conversely, a lower response rate was observed when the caregiver was the spouse (56.2%). Response rates ranged from about 80% for letters sent four to six months after the patients’ death to about 60% for letters sent after eight months or more. A descriptive analysis of refusals, based on the transcripts of the telephone calls, allowed classification of 61% of refusals for at least one of the two dimensions examined: caregiver psychological suffering and quality of care received by the patient. Psychological suffering was present in 99% of refusals examined for this dimension (48%). Conversely, a poor quality of care was reported by 63% of the refusals examined for this dimension (23%). Conclusion: The ISDOC survey provides a representative picture of the needs and problems associated with the last three months of life of Italian cancer patients.

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Support/services and family carers of persons with stroke impairment: perceived importance and services received

Objective: To examine what family carers of persons with stroke impairment perceive as important support and service quality characteristics in relation to their experienced strain/burden, and to explore to what extent family carers receive support/services perceived as important. Design: Data from a cross-sectional study. Subjects: A sample of 183 family carers in Sweden, 64 experiencing lower and 119 experiencing higher strain/burden, a subsample of the EUROFAMCARE project. Methods: Carers were interviewed using a structured questionnaire. Results: There are few differences between carers experiencing high and low strain/burden in what they perceive and receive in terms of important support and service quality characteristics. Information, relief, and counselling support/services are highly valued. It is also important that services improve quality of life, and have good process qualities regarding interaction with staff and individualization. Most services regarded as important are received by less than 60% of carers. Conclusion: The variation is rather high on an individual level in terms of what carers regard as important, indicating that factors other than negative impact may influence their perceptions of support/service and service quality. Thus, it is important to know carers’ perceptions in order to individualize support/service, and thus make it more available and efficient.

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Survival of persons with Alzheimer's disease: caregiver coping matters

Purpose: Although persons with Alzheimer's disease (AD) require increasingly more assistance with activities of daily living as their disease progresses, the caregiving environment has received little attention as a source of predictors of their survival time. We report here on a study to determine whether variation in survival time of persons with AD can be better explained by including caregiver variables such as coping style and depressive symptoms as predictors. Design and Methods: A sample of 193 persons with AD residing in the community and their family caregivers was used to estimate the parameters of a Cox regression model of survival time that included both caregiver characteristics and care-recipient impairments as covariates. Results: Caregiver wishfulness–intrapsychic coping was related to shorter care-recipient survival time, but instrumental and acceptance coping and caregiver depressive symptoms were not associated with survival time. Care-recipient impairments (dependency in activities of daily living, low score on the Mini-Mental State Examination, and problematic behaviors) were associated with shorter survival time. Implications:Because this study is the first to report the link between caregiver coping and care-recipient survival, further study to understand the dynamics is required. We discuss several possible mechanisms, including the possibility that caregivers engaging in wishfulness–intrapsychic coping are less psychologically available to the person with dementia. These caregivers may therefore provide less person-centered care that is responsive to the true capacities of the person with dementia, and thus they may inadvertently contribute to excess disability and consequent accelerated decline. Because wishfulness–intrapsychic coping was uncorrelated with instrumental or acceptance coping, our findings suggest that interventions to enhance coping skills among caregivers, which have focused primarily on increasing problem solving and acceptance coping, also may have to include specific attempts to reduce wishfulness–intrapsychic approaches to benefit not only the caregiver but the care recipient as well.

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Impact of informal care levels on discontinuation of living at home in community-dwelling dependent elderly using various community-based services

The aim of the study was to examine the effect of informal care levels on overall discontinuation of living at home, all-cause death, hospital admission, and long-term care placement for community-dwelling older people using various community-based services during a 3-year period. Prospective cohort study of 1582 community-dwelling disabled elderly and paired informal caregivers was conducted. Baseline data included the recipients and caregivers' demographic characteristics, comorbidities, informal care levels (sufficient, moderate, and insufficient care), which were evaluated by trained visiting nurses, and the level of formal community-based service use. Among 1582 participants, 97 died at home, 692 were admitted to hospitals, 318 died during their hospital stay, and 117 were institutionalized in long-term care facilities during 3 years of follow-up. A multivariate Cox hazard model demonstrated that when compared with a sufficient informal care level, an insufficient informal care level was associated with overall discontinuation of living at home, all-cause mortality, hospitalization, and institutionalization during 3 years of follow-up (hazard ratio: 1.65, 95% confidence interval: 1.15-2.36; 1.98, 1.17-3.34; 1.56, 1.04-2.35; 2.93, 1.25-6.86, respectively). The results suggested that informal caregiving is an important factor in the prevention of overall discontinuation of living at home in a population of disabled older people.

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Which carers of family members at the end of life need more support from health services and why?

With end of life care a national priority in many countries, and the main place of care the family home, informal family carers are now considered the frontline of primary care. Yet we are insufficiently informed about the needs of carers, both during the time of caring and during bereavement. This study identifies which carers believed they did not get enough support from health services when caring for a terminally ill family member, what factors influenced perceptions of support, and whether inadequate support influenced the carer's health following the death of a family member. Unlike previous survey designs that explore end-of-life concerns, we were able to triangulate interview data from semi-structured telephone interviews (August 2005–June 2006) with a relatively large group of 1071 carers in Western Australia, with administrative records from death registrations, hospital morbidity and community care records from the 1071 deceased family members. The addition of administrative data allowed us to quantify hospital and community care service use. Data analysis consisted of summary statistics and logistic regressions for two groups of carers during the first few months of bereavement: those whose health got a bit/lot worse, and those who were not coping on most/all days. We found that carers were more likely to have poor health if they perceived they did not get enough support from health services and if the deceased family member did not die in the carer's preferred place of death. Additionally, carers were more likely to be not coping if they were aged 60 years or less, female, had lost a spouse/partner and the deceased family member did not die in the carer's preferred place. By identifying which carers are more vulnerable than others, carer education and practical support can be targeted to specific groups. Ideally resources for bereavement support should be extended into the months following the relative's death.

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What kinds of jobs help carers combine care and employment?

This paper provides information about what job characteristics promote or inhibit maintaining employment while caring. Using a nationally representative longitudinal data set—the Household Income and Labour Dynamics in Australia (HILDA) survey—the paper traces the effects of the onset of care on labour force participation. This study used multivariate techniques to analyse five clusters of influences that might affect carer employment: the intensity of care responsibilities; the employees’ own characteristics; the characteristics of their employment; their workplace arrangements; and the employee’s rating of the stress, satisfaction and security associated with their job. The results showed that moderate to intensive caring responsibilities militate against maintaining labour force participation in the face of caring responsibility. Working as a casual employee, in a job without supervisory responsibilities, in smaller firms, with poor leave arrangements, no flexibility in hours and low job security all decrease the probability that carers remain in employment.

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Literature review: use of respite by carers of people with dementia

Respite care is a cornerstone service for the home management of people with dementia. It is used by carers to mitigate the stress related to the demands of caring by allowing time for them to rest and do things for themselves, thus maintaining the caring relationship at home and perhaps forestalling long-term placement in a residential aged care facility. Despite numerous anecdotal reports in support of respite care, its uptake by carers of people with dementia remains relatively low. The aim of this paper was to examine the factors that constitute the use of respite by carers of people with dementia by reviewing quantitative and qualitative research predominantly from the years 1990 to 2012. Seventy-six international studies of different types of respite care were included for this review and their methods were critically appraised. The key topics identified were in relation to information access, the barriers to carers realising need for and seeking respite, satisfaction with respite services including the outcomes for carers and people with dementia, the characteristics of an effective respite service and the role of health workers in providing appropriate respite care. Finally, limitations with considering the literature as a whole were highlighted and recommendations made for future research.

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Maintaining control over illness: a model of partner activity in prostate cancer

Prostate cancer demonstrates particular characteristics and potential stresses for both patient and partner, yet its consequences for the couple are often inadequately addressed in the clinical setting. One-to-one interviews have shown areas of partner need but do not address the dynamic of the couple which itself holds implications for clinical practice. The participation of nine out of a possible 15 women in interviews with men taking part in a study of information needs suggested the extent of involvement by partners in prostate cancer. Secondary analysis of the verbal interaction and thematic content of the interviews authenticated the representation by members of the couple of the struggle against cancer as a shared experience. The women were shown to exercise authority, accepted by men in relation to illness-related issues and assumed responsibility for the management of information, care and the continuation of normal day-to-day life. Findings suggest a model of partner activity in prostate cancer conceptualized as ‘maintaining control over illness’. In the clinical setting, attention to the interaction between partners may facilitate appropriate communication strategies by health professionals, leading to more effective information exchange. Encouragement of the attendance and involvement of partners in the planning of care would support their contribution.

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Is use of formal community services by older women related to changes in their informal care arrangements?

This paper examines how the relationships between the factors (predisposing, enabling and illness) of the 1973 Andersen framework and service use are influenced by changes in the caring role in older women of the 1921–26 cohort of the Australian Longitudinal Study on Women's Health. Outcome variables were the use of three formal community support services: (a) nursing or community health services, (b) home-making services and (c) home maintenance services. Predictor variables were survey wave and the following carer characteristics: level of education, country of birth, age, area of residence, ability to manage on income, need for care, sleep difficulty and changes in caring role. Carer changes were a significant predictor of formal service use. Their inclusion did not attenuate the relationship between the Andersen framework factors and service use, but instead provided a more complete representation of carers' situations. Women were more likely to have used support services if they had changed into or out of co-resident caring or continued to provide co-resident care for a frail, ill or disabled person, needed care themselves, and reported sleep difficulties compared with women who did not provide care. These findings are important because they indicate that support services are particularly relevant to women who are changing their caring role and who are themselves in need of care.

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The commodification of care: the Italian way

Italy has one of the highest percentages of older people in Europe, a trend likely to increase faster than elsewhere alongside greater disability. Family support is also weaker through demographic developments and greater female participation in the labour market, and public policies for frail older people are underdeveloped with wide regional variations. The national scheme, the indemnita di accompagnamento (companion payment), is paid to approximately 7.3% of severely disabled people over 65 based on assessment of need. Private care is much greater than public provision of personal services, mainly supplied by individual workers rather than organisations. 'Routed wages' comprise the companion payment of which there are further details relating to funding, target, admittance, purpose and amount, and also local payments for care supplied by regional authorities and municipalities, with the same details listed. Local payments are increasingly widespread, mainly in the north and centre of Italy. There are several [...]

Partner care at the end-of-life: identity, language and characteristics

The delivery of services and benefits to people supporting older and disabled relatives and friends depends largely on their identification within constructs of ‘care-giving’ and ‘carer’. Those who are married or living with a partner may be particularly resistant to adopting the identity of ‘care-giver’ or ‘care receiver’. This paper investigates the circumstances of couples and their adoption of carer identities, drawing on a study of the financial implications of a partner's death. That study was based on over 750 couples where one partner died, drawn from the British Household Panel Survey, and separate qualitative interviews with people whose partner died in the previous two years. The findings show that carer self-identification was influenced by the partner's health-care needs and service contacts, including welfare benefits receipts. None of the socio-demographic factors considered was statistically linked to whether people described themselves as providing care for their partner, unless there was an underlying association with the partner's health-care needs. The findings underline the problems of using self-reported identities in surveys and estimates of take-up of services and benefits, and the difficulties of delivering entitlements to people who care for their partner at the end-of-life. A challenge for policy makers is how to move beyond formal categories of ‘carer’ and ‘care-giving’ to incorporate inter-dependence, emotional commitment and the language of relationships in planning support for frail older people.

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Carers in the region: a profile of the East of England

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the East of England region. In 2001 there were 517,877 carers in the East of England region, which is 10% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the East of England region.

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An investigation of models of illness in carers of schizophrenia patients using the Illness Perception Questionnaire

BACKGROUND: Although carers' reactions to schizophrenic illness in a close family member may have important implications for the patient and for themselves, little is known of factors that influence the way carers respond. In the area of physical health problems, people's models of their illness or illness representations have been found to be related to the ways they react and cope with their illness. This study examines the use of a modified form of the Illness Perception Questionnaire (IPQ) to investigate illness models in a sample of carers of schizophrenia patients.

METHODS: Forty-seven carers participated. The psychometric properties of the modified IPQ were examined, and a number of carer and patient outcomes were investigated in relation to carer scores on the illness identity, consequences, control-cure and timeline subscales of the modified IPQ. These outcomes included measures of carer distress and burden, expressed emotion dimensions, and patient functioning.

RESULTS: The modified IPQ was found to be a reliable measure of carers' perceptions of schizophrenia. Carer functioning, the patient-carer relationship and patient illness characteristics were associated with different dimensions of illness perceptions.

CONCLUSIONS: The findings support the proposal that carer cognitive representations of the illness may have important implications for both carer and patient outcomes in schizophrenia.

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Specialist nurses for older people: implications from UK development sites

Aim.  This paper is a report of a study to explore the development of specialist staffing for older people in six case study sites in the United Kingdom.

Background.  In the United Kingdom there has been some concern about the health care available to older people, leading to the development of a National Service Framework. A key theme of this framework is the development of specialist staff skilled in providing services tailored to the needs of older people.

Method.  A soft systems methodology was used in 2004–2005 to carry out interviews with key people, including specialist nurses for older people, other service providers, patients and informal carers (n = 132) in six case study sites identified from a national questionnaire. Interviewees were asked to describe their perceptions of the development, its history and its impact.

Findings.  The development of specialist nursing services seemed to be shaped by national policy drivers for service development, which may not have been directly linked to the needs of older people. The ideal qualities of a specialist nurse for older people were described by participants as including not only knowledge and skills, but also personal characteristics.

Conclusion.  While progress has been made in establishing specialist posts, much remains to be explored about the roles of postholders, the qualities needed, and the support and preparation required. While advanced practice is a professional aspiration, a number of questions arise about the development of nursing as a self-directing profession in diverse international settings. Theories of specialist nursing practice also need to address the tensions between universal and local models and to consider theories about nursing older people.

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Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta- analysis

In the present meta-analysis, we integrated findings from 228 studies on the association of six caregiving-related stressors and caregiving uplifts with burden and depressed mood. Care recipients' behavior problems showed stronger associations with caregiver outcomes than other stressors did. The size of the relationships varied by sample characteristics: Amount of care provided and care receivers' physical impairments were less strongly related to burden and depression for dementia caregivers than for caregivers of nondemented older adults. For spouse caregivers, physical impairments and care recipients' behavior problems had a stronger relationship to burden than for adult children. Furthermore, we found evidence that the association of caregiver burden with the number of caregiving tasks, perceived uplifts of caregiving, and the level of physical impairment of the care receiver were stronger in probability samples than in convenience samples.

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Measuring the impact of informal elderly caregiving: a systematic review of tools

Purpose: To classify and identify the main characteristics of the tools used in practice to assess the impact of elderly caregiving on the informal carers' life. Methods A systematic review of literature was performed searching in Embase, MEDLINE, PsycINFO, CINAHL, IBECS, LILACS, SiiS, SSCI and Cochrane Library from 2009 to 2013 in English, Spanish, Portuguese and French, and in reference lists of included papers. Results The review included 79 studies, among them several in languages other than English. Their inclusion increased the variety of identified tools to measure this impact (n = 93) and allowed a wider analysis of their geographical use. While confirming their overlapping nature, instruments were classified according to the degree of integration of dimensions they evaluated and their specificity to the caregiving process: caregiver burden (n = 20), quality of life and well-being (n = 11), management and coping (n = 21), emotional and mental health (n = 29), psychosocial impact (n = 10), physical health and healthy habits (n = 2), and other measures. A high use in practice of tools not validated yet and not caregiver-specific was identified. Conclusions: The great variety and characteristics of instruments identified in this review confirm the complexity and multidimensionality of the effects of elderly caregiving on the informal carer’s life and explain the difficulties to assess these effects in practice. According to the classification provided, caregiver burden and emotional and mental health are the most evaluated dimensions. However, further work is required to develop integrated and caregiving focused procedures that can appraise this complexity across different countries and cultures.

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Informal caregiving at working age: Effects of job characteristics and family configuration

This article addresses the relationship between employment and providing informal care for sick, disabled, or elderly people in Great Britain. Hazard rate models for taking up caring and leaving work when caring are estimated using retrospective family, employment, and caring data from the British Family and Working Lives Survey 1994 - 1995 for 9,139 British men and women. Family roles but not employment characteristics were relevant for men and women taking up caring. Being in a lower social class was, however, an important predictor of female carers leaving the labor market. Starting caring and quitting the labor market were not affected by women working part time, nor by most aspects of job flexibility that were considered.

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Willingness-to-pay for reductions in care need: estimating the value of informal care in Alzheimer's disease

Objective: To estimate the value of informal care in Alzheimer's disease using contingent valuation.

Methods: A questionnaire was administered to 517 primary carers in four countries (UK, Spain, Sweden, and US). Dichotomous choice and bidding game methods were used to elicit their willingness to pay for a reduction in care burden by 1 h per day, or a total elimination of care needs. Further, the relationship between carer willingness to pay and carer and patient characteristics including disease severity and income was examined.

Results: Carers spend on average about 7–9 h per day on giving care to their patient, of which 4–5 h constituted basic and instrumental ADL tasks. For a 1 h reduction in need for care per day, carers in the UK, Spain, Sweden, and US said that they were willing to pay £105, £121, £59, and £144 per month respectively. The willingness to pay was higher for carers with higher disposable income while the influence of other determinants varied across countries. About one-third of carers were not willing to pay anything for a reduction in care.

Conclusions: Carers' stated willingness to pay for reductions in care giving time is substantial and comparable to the prices currently paid for treatments that achieve this benefit. Its determinants seem more directly related to carer status than directly to patient status and may vary by region and by cultural and sociologic factors. Copyright © 2009 John Wiley & Sons, Ltd.

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The quality and adequacy of care received at home in the last 3 months of life by people who died following a stroke: a retrospective survey of surviving family and friends using the Views of Informal Carers Evaluation of Services questionnaire

Stroke is the third leading cause of death in the UK. Despite this, little is known about the care needs of people who die from or following a stroke. In early 2003, a total of 183 questionnaires were returned from a survey of 493 people who had registered a stroke-related death in four Primary Care Trusts, giving a response rate of 37%. This paper reports on 53 deceased from the survey who had lived at home during their last 3 months and who had been ill for more than 1 month. The data were analysed to explore the role of informal carers and the provision of community-based care in the last 3 months of life. Family and friends helped 82% of deceased with household tasks, 68% with personal care, 66% with taking medication and 54% with night-time care. By contrast, health and social services helped 30% with household tasks, 54% with personal care, 20% with taking medication and 6% with night-time care. Two-fifths (43%) of informants had to give up work or make major life changes to care for the deceased, and 26% of informants found looking after them 'rewarding'. Half (51%) reported that help and support from health services were excellent or good compared to 38% for social services. Results from the Regional Study of Care for the Dying indicated that people who died from a stroke in 1990 and their informal carers would have benefited from increased levels of community-based care and enhanced communication with care professionals. Our data suggest that informal carers continue to provide the majority of care for those who die from stroke, despite government initiatives to improve care for stroke patients and frail elderly people. Further research is required to explore best practice and service provision in caring for this group.

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Informal support in Portugal by individuals aged 50+

In Portugal, individuals aged 50+ have an important role in the provision of co-residential care. This study aimed to rank Portugal relative to 15 European countries with regard to the prevalence of co-residential care (daily or almost daily personal care), and extra-residential help/care (household help and/or personal care) provided by individuals aged 50+, and determine the factors associated with the provision of these types of support in the Portuguese context. The study used data from the SHARE wave 4 project (2010–2011) and was based on an analysis of variance and logistic regression models. Portugal differs from other European countries, as it has the highest rate of co-residential care (12.4 %) and the lowest rate of provision of extra-residential help/care (10.8 %). It is concluded that the quality of life (QoL) of Portuguese co-residential carers is lower than the QoL of non-carers, but extra-residential help/care provided once a month or less has a positive impact on the QoL of the providers. Co-residential care and the provision of frequent extra-residential help/care (daily or weekly) were associated with a higher number of depressive symptoms. The results further showed that, in Portugal, co-residential carers and extra-residential helpers/carers have different socio-demographic, economic and health characteristics. This study demonstrates that it is important for scientific research to differentiate the type and frequency of informal support, since this can help us design policies to meet the specific needs of the various types of informal carers aged 50+.

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Burden among partner caregivers of patients diagnosed with localized prostate cancer within 1 year after diagnosis: an economic perspective

Purpose: Informal care plays an important role in the overall care for people with cancer. This study estimates lost productivity and informal caregiving and associated costs among partner caregivers of localized prostate cancer patients within 1 year after diagnosis.

Methods: We applied data from the Family and Cancer Therapy Selection study, a three-wave self-administered survey among patients diagnosed with localized prostate cancer and their partner caregivers in multiple clinics in the USA. Time spent was measured by the sum of working hours lost, informal caregiving hours performed, and hours spent on household chores. The national median income for women 55 years or older was used to calculate costs associated with the time spent using the opportunity cost method. Descriptive and bivariate analyses were conducted.

Results: The average working hours decreased from 14.0 h/week (SD = 17.6) to 10.9 h/week (SD = 15.9), without a significant change in responsibility/intensity at work. The mean annual time spent on informal caregiving and household chores was 65.9 h/year (SD = 172.4) and 76.2 h/year (SD = 193.3), respectively. The mean annual economic burden among partner caregivers was US$6,063 (range US$571–US$47,105) in 2009 dollars accounted for by a mean of 276.2 h (range 26–2,146) in the study sample. The time spent on informal caregiving and household chores varied by patient and caregiver characteristics.

 Conclusions: Pilot estimates on non-medical economic burden among partner caregivers (spouses) during the initial phase of the treatment provide important information for comprehensive estimation of disease burden and can be used in cost-effectiveness analyses of prostate cancer interventions.

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Qualitative evaluation of a young carers' initiative

This focus of this article is a qualitative, evaluative study of three Crossroads young carers projects. Focus group discussions took place with 24 young people aged 11-16 years. Data were analysed using a thematic content analysis approach. The themes of the research were: experiences of being a young carer, peer support, opportunities for time out and purposeful activities. The personal characteristics of the participants give rise to a number of worrying conclusions, that relatively young people were found to be undertaking primary caring roles over long periods of time. However, the groups were found to provide opportunities for young carers to experience a positive environment, participate in purposeful activities and have the chance to develop new friendships. Nevertheless, the literature suggests that provision of such projects is inadequate and under-resourced, which may disadvantage further a group of young people who are known to come from lower income families.

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Strain and its correlates among carers of people with dementia in low-income and middle-income countries; a 10/66 Dementia Research Group population-based survey

Objectives: In a multi-site population-based study in several middle-income countries, we aimed to investigate relative contributions of care arrangements and characteristics of carers and care recipients to strain among carers of people with dementia. Based on previous research, hypotheses focused on carer sex, care inputs, behavioural and psychological symptoms (BPSD) and socioeconomic status, together with potential buffering effects of informal support and employing paid carers.

Methods: In population-based catchment area surveys in 11 sites in Latin America, India and China, we analysed data collected from people with dementia and care needs, and their carers. Carer strain was assessed with the Zarit Burden Interview.

Results: With 673 care recipient/carer dyads interviewed (99% of those eligible), mean Zarit Burden Interview scores ranged between 17.1 and 27.9 by site. Women carers reported more strain than men. The most substantial correlates of carer strain were primary stressors BPSD, dementia severity, needs for care and time spent caring. Socioeconomic status was not associated with carer strain. Those cutting back on work experienced higher strain. There was tentative evidence for a protective effect of having additional informal or paid support.

Conclusions: Our findings underline the global impact of caring for a person with dementia and support the need for scaling up carer support, education and training. That giving up work to care was prevalent and associated with substantial increased strain emphasizes the economic impact of caring on the household. Carer benefits, disability benefits for people with dementia and respite care should all be considered. Copyright © 2012 John Wiley & Sons, Ltd.

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In their own right: translating the policy of carer assessment into practice

Successive legislation has underscored the importance of assessments that are sensitive to the needs of carers and take into account their ability and willingness to continue caring. This paper synthesizes qualitative and quantitative findings from a continuing programme of carer-related research that began in 1993 and has continued in parallel with legislative changes. It considers the process and characteristics of carer assessment from the perspectives of carers for individuals with a range of health and social care needs, and practitioners. This paper explores the assessment of carer need over time and highlights the considerable and enduring gap between policy and practice. It considers practitioners’ reluctance to offer separate carer assessments, identifies confusion relating to the interpretation of eligibility criteria and documents the limited contribution of health service staff. The need for an evidence-based framework for good practice, that distinguishes between carer needs, service provision and carer outcomes, is highlighted. The paper concludes by identifying key changes that are necessary to promote future good practice, such as staff training and information strategies and the need for practitioners to engage with carers as partners in the care process.

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Caregivers' anxiety and self-efficacy in palliative care

This study examined the relationship between caregivers' anxiety supporting a patient with advanced cancer and self-efficacy and their socio-demographic characteristics, and then whether these variables could influence their self-efficacy. One hundred and seven caregivers of advanced cancer patients participated in the study and completed the Greek versions of the State–Trait Anxiety Inventory (STAI) and the General Perceived Self-efficacy Scale (GSE). Significant comparisons were found between State anxiety and female gender (P= 0.009), cohabitation (P= 0.002) and relationship with the patient (P= 0.004); statistically significant associations were found between State, Trait anxiety and self-efficacy scores of caregivers (P < 0.0005 respectively). A multiple regression model (enter method) showed women (P= 0.005), spouses (P= 0.01) and self-efficacy (P= 0.02) as the significant predictors of State anxiety. Furthermore, self-efficacy seemed to be the strongest contributor of trait anxiety (P < 0.0005). Female caregivers and spouses of advanced cancer patients experience more state anxiety levels than men and other caregivers respectively. In addition, caregivers with low self-efficacy are more likely to have elevated anxiety scores than self-efficacious caregivers. These findings can help healthcare professionals focus on some problems common to caregivers of cancer patients and plan appropriate interventions.

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Monetising the provision of informal long-term care by elderly people: estimates for European out-of-home caregivers based on the well-being valuation method

Providing informal care can be both a burden and a source of satisfaction. To understand the welfare effect on caregivers, we need an estimate of the ‘shadow value’ of informal care, an imputed value for the non-market activity. We use data from the 2006–2007 Survey of Health Ageing and Retirement in Europe which offers the needed details on 29,471 individuals in Austria, Belgium, the Czech Republic, Denmark, France, Germany, Italy, the Netherlands, Poland, Spain, Sweden and Switzerland. Of these, 9768 are unpaid non-co-resident caregivers. To estimate net costs, we follow the subjective well-being valuation method, modelling respondents' life satisfaction as a product of informal care provision, income and personal characteristics, then expressing the relation between satisfaction and care as a monetary amount. We estimate a positive net effect of providing mode rate amounts of informal care, equivalent to €93 for an hour of care/week provided by a caregiver at the median income. The net effect appears to turn negative for greater high care burdens (over 30 hours/week). Interestingly, the effects of differences in care situation are at least an order of magnitude larger. We find that carers providing personal care are significantly more satisfied than those primarily giving help with housework, a difference equivalent to €811 a year at the median income. The article makes two unique contributions to knowledge. The first is its quantifying a net benefit to moderately time-intensive out-of-home caregivers. The second is its clear demonstration of the importance of heterogeneity of care burden on different subgroups. Care-giving context and specific activities matter greatly, pointing to the need for further work on targeting interventions at those caregivers most in need of them.

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Stroke caregivers' strain prevalence and determinants in the first six months after stroke

PURPOSE: Many disabled stroke survivors live at home supported by informal caregivers. Research has revealed that these caregivers are experiencing strain. This study aims to examine the prevalence and differences over time of caregivers' strain in the first 6 months post-stroke and to predict caregiver strain based on patients' and caregivers' characteristics and service input.

METHOD: Ninety consecutive patients and their caregivers were assessed at 2, 4 and 6 months post-stroke. The Caregiver Strain Index was used to evaluate strain. Patients' motor function, functional ability, health status, emotion and participation and caregivers' gender and relation to the patient and service input after discharge were measured to determine the predictive factors.

RESULTS: Nearly one out of three caregivers experienced strain. No differences were seen between 2, 4 and 6 months post-stroke. Correlation and multiple regression analyses revealed that in predicting strain, the patients' functional and activity level plays an important role in the sub-acute phase while the participation level gets more important over time.

CONCLUSIONS: These findings emphasize the importance of maximal physical recovery and optimal reintegration in the community. This is not only essential for the patients themselves but also a pre-requisite to reduce the strain of their caregivers.

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Predictors of high level of burden and distress in caregivers of demented patients: results of an Italian multicenter study

Considerable suffering is experienced by carers of patients with dementia. Most existing studies do not consider the coexistence of subjective and objective aspects that cause, interacting to each other, this suffering. The authors: (1) define the high-risk group of caregivers on the bases of the scores obtained on the four scales evaluating burden, distress, depression and anxiety (BDDA) taken into account simultaneously and (2) evaluate risk factors related to the high level of BDDA. 419 elderly outpatients with dementia and their caregivers were enrolled. Patients were evaluated for their cognitive, neuropsychological and functional impairment and for comorbidity. Caregivers were evaluated with four scales for the assessment of burden, distress related to neuropsychological disturbances, depression and anxiety. Cluster analysis was used to identify the group with the High level of BDDA (HBDDA). By multiple logistic analysis, disability, specific behavioural disturbances of the patients as well as caregiver's age, type of relationship and living in the south of Italy were observed to be a major risk factor for HBDDA.  Conclusion: The targeted use of scales specifically assessing BDDA of the caregiver and the identification of particular patient and caregiver characteristics are able to allow a precise and early definition of caregivers at high risk of burden and distress. This might be helpful in planning the correct social/clinical/rehabilitative approach. Copyright © 2005 John Wiley & Sons, Ltd.

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Who cares? Geographic variation in unpaid caregiving in England and Wales: evidence from the 2001 census

This article investigates the prevalence of unpaid caregiving by local authority district in England and Wales, using data from a new question on caregiving in the 2001 Census. We also examine geographic variation in the characteristics of unpaid care providers including health status, socio-economic status and ethnicity. Results show clear geographic variations in caregiving. The proportion of adults providing more than 20 hours of care per week ranged from less than 2 per cent to nearly 8 per cent. The highest proportions of caregivers were found in areas with higher than average levels of deprivation and long-term illness. Carers in such areas were themselves more likely to be in poor health. There are also clear variations in caregiving propensity by ethnic group.

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Informal Caregivers and the Risk of Nursing Home Admission Among Individuals Enrolled in the Program of All-Inclusive Care for the Elderly

PURPOSE: We sought to determine whether participants in the Program of All-Inclusive Care for the Elderly (PACE) with an informal caregiver have a higher or lower risk of nursing home admission than those without caregivers.

DESIGN AND METHODS: We performed a secondary data analysis of 3,189 participants aged 55 years or older who were enrolled in 11 PACE programs during the period from June 1, 1990 through June 30, 1998. Cox proportional hazard models determined whether having any caregiver, as well as specific caregiver characteristics, such as either living separately from the enrollee, being over the age of 75 years, providing personal care, not reducing or quitting work to provide care, or not being a spouse, predicted time to nursing home admission.

RESULTS: Fewer than half of the participants (49.4%) lived with a caregiver, and 12.4% had no caregiver. Individuals who lived with their caregiver were frailer than either those who lived separately or those without a caregiver. We measured frailty in terms of functional and cognitive status, incontinence, and multiple behavioral disturbances. The presence of a caregiver did not change the risk for institutionalization. None of the caregiver characteristics were associated with a higher risk of nursing home admission.

IMPLICATIONS: Unlike individuals in the general population, participants in PACE who lack an informal caregiver are not at higher risk of institutionalization. Further research is required to ascertain whether PACE's comprehensive formal services compensate for the lack of informal caregiving in limiting the risk for institutionalization.

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Negative/positive home-based caregiving appraisals by informal carers of the elderly in Japan

This study aimed to determine factors associated with negative/positive home-based caregiving appraisals by informal carers of older people in Japan to consider which family carers’ community health nurses should focus on.

Because of the increasing older population in Japan, those needing a high level of care have become more dependent on informal carers. Carers’ health is an important aspect of caregiving. Community health nurses play an important role in assessing carers’ health, and carer appraisals, that is, how carers perceive their caregiving work, may help them better understand the health state of carers.

This quantitative study examined 192 primary carers of the elderly (care level >3) who used home-visiting nursing services in both rural and urban Japanese communities. The Japanese version of the Zarit scale (22 items) was used for negative appraisal and a positive caregiving appraisal scale (14 items) for positive appraisal. Participants with above-median scores (care burden, 30.0; positive caregiving appraisal, 39.0) were categorized as having a high care burden and high positive appraisal. To determine factors associated with appraisals, multinomial regression analysis was performed. Negative/positive appraisals were separately set as a dependent variable, and 17 items relating to carer characteristics, care-recipient characteristics, and external variables were set as independent variables. This was followed by stepwise regression and backward elimination.

With respect to care burden, positively associated factors were sekentei or social pressure [odds ratio (OR) 4.25, 95% confidence interval (CI) 1.39–13.04], caregiving obligation (OR 3.11, 95% CI 1.43–6.77), spouse carer (OR 2.58, 95% CI 1.05–6.35), daughter-in-law carer (OR 3.68, 95% CI 1.31–10.34), and depression (OR 50.58, 95% CI 13.85–184.67). With respect to positive appraisal, negatively associated factors were caregiving obligation (OR 0.29, 95% CI 0.15–0.53), male carer (OR 0.44, 95% CI 0.21–0.92), and daughter-in-law carer (OR 0.29, 95% CI 0.12–0.74).

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People with dementia living alone: what are their needs and what kind of support are they receiving?

Background: In the U.K. about 141,460 people with dementia (PWD) live alone. They are at risk of social isolation and inadequate social and medical supervision. The aims of this study were to identify the needs of PWD living alone and to compare the needs of PWD living alone versus those living with others. It was predicted that PWD living alone would have significantly more unmet needs than those living with others.; Methods: 152 PWD were interviewed about their cognitive status and quality of life (QoL); and 128 informal carers were interviewed about the PWD's QoL, social networks, behavioral and psychological symptoms (BPSD), functional status, and services used. For 24 PWD no carer was available. Carers were also interviewed about their own symptoms of depression, anxiety, burden, and satisfaction. Researchers rated PWD's needs. One-third of the PWD (50) were living alone.; Results: PWD living alone had significantly more unmet needs (M = 3.9, s.d. 3.1) than those living with others (M = 2.0, s.d. 2.0) (U = 1578, p < 0.01) particularly in the areas of looking after home (χ2 = 17.23, p < 0.001), food (χ2 = 13.91, p < 0.002), self-care (χ2 = 10.23, p < 0.002) and accidental self-harm (χ2 = 16.51, p < 0.001). The most frequent unmet needs were daytime activities (27, 54.0%), company (26, 52.0%), psychological distress (22, 44.0%), eyesight/hearing (16, 32.0%), and accidental self-harm (16, 32.0%). Conclusion: PWD living alone are a vulnerable group who are at increased risk for unmet social, environmental, psychological and medical needs. This study illustrates the need to identify these individuals and to make provisions among social service agencies to monitor their well-being regularly and provide a higher level of support when needs are identified.

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The relationship between patient characteristics and carer psychological status in home palliative cancer care

Goals: Despite being both providers and intended recipients of care, informal carers in cancer palliative care report high levels of distress and unmet needs. In order to develop supportive care strategies, this analysis aimed to identify which patient characteristics contribute to carer psychological distress and which coping strategies carers employ.; Patients and Methods: Informal carers attending two home palliative care services gave cross-sectional data regarding patient characteristics and their own psychological status using standardised measures. Multivariate analyses were performed for each dependent carer psychological measure, with patient characteristics as independent variables (adjusted for carer age and gender).; Main Results: Forty-three carers participated. Greater patient distress was associated with carer anxiety (b value: magnitude of the effect) (b=0.31, p=0.07), and both patient psychological status (b=0.37, p=0.02) and pain (b=0.29, p=0.09) were associated with carer psychological morbidity. Carer burden was associated with patient psychological distress (b=0.35, p=0.03) and pain (b=0.29, p=0.08). Carer avoidance/emotion-focused cognitive coping strategies were associated with patient physical function (b=0.34, p=0.04), and cognitive problem-focused coping was associated with patient symptoms (b=0.28, p=0.06) and physical function (b=0.29, p=0.05). Conclusions: Adequate provision of patient psychological interventions and effective pain education and control are needed in order to improve carers' psychological health. Patient characteristics are associated with apparently opposing forms of carers' coping (i.e. both avoidance and engagement), demonstrating the importance of interventions addressing a range of coping responses. Further research is needed to understand why carers employ problem-focused coping in response to symptoms but not to pain. Evidence-based interventions for informal carers are urgently needed but must be delivered in the context of optimal patient pain and symptom control.

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Caring for older adults with diabetes mellitus: characteristics of carers and their prime roles and responsibilities

Aims: Expanding prevalence of diabetes has a major health impact on older people and the burden experienced by their informal carers. We report research which aimed to examine the burden on carers and highlight their input into diabetes care.; Methods: Of 98 diabetes patients aged over 59 years, 89 regularly received help with day-to-day activities or looking after from someone else and, of these, 83 carers consented to interview. Patients and carers were administered questionnaires related to the management of diabetes and personal strain (including Diabetes Knowledge Questionnaire, EuroQol, Caregiver Strain Scale and General Health Questionnaire).; Results: A substantial unmet need of older people with diabetes mellitus, in relation to domestic activities and diabetes care, was highlighted. Patient and carer diabetes knowledge was low. Primary carers were generally female relatives from the same household, not in paid employment. Twenty-seven carers (33%) provided ≥ 35 h of care work each week. Most carers experienced a moderate level of stress, but 11 (14%) regularly felt overwhelmed. Thirty-three carers (40%) said they had never received any information on diabetes from professionals. Help most frequently wanted was advice and support in relation to accessing community services and about finances, benefits and/or allowances. Conclusions: Both patient and carer diabetes education strategies are required. Instruction for carers in the basic care of patients with diabetes is also needed and should be targeted. As many as one in seven carers felt regularly overwhelmed and lacked adequate support. Finally, 26 carers (31%) were entitled to benefits which they did not claim.

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Abuse of vulnerable people with dementia by their carers: can we identify those most at risk?

Objective: We wanted to explore possible associations between characteristics of carers, dementia sufferers and the caring situation and the presence of abuse that was acknowledged by carers.

Methods: Eighty-two carers of dementia sufferers were interviewed in their homes about three types of abuse (verbal abuse, physical abuse and neglect) using a structured questionnaire.

Results: Fifty-two percent (n = 43) carers admitted to having carried out some form of abuse. Verbal abuse was the most common form (n = 42, 51%), while 20% (n = 16) of carers admitted to physical abuse and 4% (n = 3) to neglect abuse. Significant associations were found between verbal abuse and psychological ill health in the carer and behavioural problems in the dementia sufferer. Physical abuse was significantly associated with higher levels of self-reported good health by the carer. High expressed emotion measured in carers was highly correlated with all types of abuse.

Conclusion: It is possible to identify situations where people with dementia may be at high risk of abuse from their carers. Any effective intervention strategy should address psychological health problems in the carer, behavioural problems in the dementia sufferer and a strategy to manage high levels of expressed emotion in these situations.

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Identifying target groups for the prevention of depression among caregivers of dementia patients

Background: Depression in informal caregivers of persons with dementia is a major, costly and growing problem. However, it is not yet clear which caregivers are at increased risk of developing depression. With this knowledge preventive strategies could focus on these groups to maximize health gain and minimize effort.

Methods: The onset of clinically relevant depression was measured with the Center for Epidemiologic Studies - Depression Scale in 725 caregivers who were not depressed at baseline and who were providing care for a relative with dementia. Caregivers were followed over 18 months. The indices calculated to identify the most important risk indicators were: odds ratio, attributable fraction, exposure rate and number needing to be treated.

Results: The following significant indicators of depression onset were identified: increased initial depressive symptoms, poor self-rated health status and white or Hispanic race/ethnicity. The incidence of depression would decrease by 72.3% (attributive fraction) if these risk indicators together are targeted by a completely effective intervention. Race/ethnicity was not a significant predictor if caregivers of patients who died or were institutionalized were left out of the analyses.

Conclusion: Detection of only a few characteristics makes it possible to identify high-risk groups in an efficient way. Focusing on these easy-to-assess characteristics might contribute to a cost-effective prevention of depression in caregivers.

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Caregiver burden, time spent caring and health status in the first 12 months following stroke

OBJECTIVE: To quantify time caring, burden and health status in carers of stroke patients after discharge from rehabilitation; to identify the potentially modifiable sociodemographic and clinical characteristics associated with these outcomes. METHODS: Patients and carers prospectively interviewed 6 (n=71) and 12 (n=57) months after discharge. Relationships of carer and patient variables with burden, health status and time analysed by Gaussian and Poisson regression. RESULTS: Carers showed considerable burden at 6 and 12 months. Carers spent 4.6 and 3.6 hours per day assisting patients with daily activities at 6 and 12 months, respectively. Improved patient motor and cognitive function were associated with reductions of up to 20 minutes per day in time spent in daily activities. Better patient mental health and cognitive function were associated with better carer mental health. CONCLUSIONS: Potentially modifiable factors such as these may be able to be targeted by caregiver training, support and education programmes and outpatient therapy for patients.

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Supporting the supporters

A recent study commissioned by the NHS Service Delivery and Organisation research and development programme (SDO) aimed to identify gaps in existing knowledge about the need for services to support mental health carers and what was meant by effectiveness and efficiency in these services. Consultation with key stakeholders was a major part of the study. This article focuses on the main findings of the consultation. Flexibility and responsive were identified as key characteristics of the ideal support service.

Informal care, health and mortality

Informal care provision is an activity in which individuals are increasingly likely to become involved across their life course, and particularly in later life, as a result of demographic changes such as increasing longevity and changes in co-residential living arrangements in later life. Academic research so far has highlighted the adverse impact of informal care provision on the financial position of the carer, however, the evidence on the impact of informal care provision on the carer's physical, mental and emotional health, and on their mortality, presents a more complex picture. This paper reviews research from the UK and beyond on the provision of informal care and its subsequent impact on health and mortality outcomes. Two key findings emerge from this review paper. Firstly, the cross-sectional analysis of data shows mixed associations between informal care provision and poor health outcomes for the carer. Such research highlights the importance of the demographic and socio-economic characteristics of the carer and the person cared for, and of the specific characteristics and nature of the care provided (e.g. duration, level). Secondly, longitudinal analysis, which typically benefits from a longer timeframe to follow up the impact of caring, shows that although informal care provision is not per se associated with adverse health and mortality outcomes, nevertheless particular types and durations of caring have shown negative outcomes.

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Social networks, befriending and support for family carers of people with dementia

Social networks are seen to influence the use of health and social care services. In a secondary analysis of data from a longitudinal study of befriending of carers of people with dementia, the authors studied the relationship between network type and support from family/friends, voluntary sector befriending and residential/nursing care. Using Wenger's typology of social networks, finding suggest that the pattern of support use varies by differences in the structure of networks. It is recommended that questions on social networks should be widely incorporated into carers' assessments to help identify need for social support interventions and to enable the sensitive selection of appropriate types of carer support to be provided.

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Carers in the region: a profile of the South East

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the South East region. In 2001 there were 732,483 carers in the South East region, which is 9% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the South East region.

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Informal carers of stroke survivors-factors influencing carers: a systematic review of quantitative studies

Purpose. Despite increasing evidence of adverse effects on informal carers of caring for stroke survivors, little is known about the characteristics of carers and survivors that influence carer outcomes. The purpose of this review is to summarize factors influencing outcomes in carers of stroke survivors. Methods. A systematic review of studies identified from English language medicine, nursing and psychology databases from 1996 - 2006 was carried out. Results. Thirty-nine studies were identified. Studies from Europe and the USA investigating negative carer outcomes dominated. Carer psychological characteristics and survivor disability were shown to influence carer outcomes. However, the diversity of carers and outcomes investigated and differences in study timing post-stroke make generalizations difficult. Conclusions. Despite improvements in study design over the last two decades, atheoretical studies employing overlapping concepts and poorly defined participants still dominate. Future studies should have theoretical underpinning and should acknowledge the diversity of carers, survivors and their situations. In addition, future emphasis on positive carer outcomes may improve understanding of protective carer factors.

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A Questionnaire to Assess Carers' Experience of Stroke Rehabilitation

PURPOSE: To establish the validity and reliability of a questionnaire measuring the experience of informal carers of patients with stroke through acute and rehabilitation hospital treatment.

METHOD: The settings were 6 stroke units in the United Kingdom. Participants were relatives of patients with stroke. The Stroke Carer Experience Questionnaire (SCEQ) asks about specific elements of care and was constructed using qualitative analyses. Convergent and discriminant validity were assessed by correlations with other questionnaires and variables. Criterion validity was examined by correlations with indices derived from qualitative data. Temporal stability was assessed by correlation with a repeated administration. The performance of the questionnaire was compared with that of the Carer Hospital Satisfaction Questionnaire (Carer HospSat).

RESULTS: Seventy-two (49%) of 147 questionnaires were returned. Test-retest reliability, assessed by a questionnaire mailed 7 days after the first completion, was 0.77. The correlation with the Carer HospSat was 0.57, indicating convergent validity. The SCEQ did not correlate with demographic variables or functional ability, which indicated discriminant validity. Significant correlations with indices derived from carers' qualitative descriptions evidenced criterion validity. The SCEQ detected specific negative experiences among carers with high global satisfaction scores on the Carer HospSat. In general, the SCEQ items were not strongly intercorrelated; only 6% of the intercorrelations were strong to moderate (30.6).

CONCLUSIONS: The SCEQ is preferable to existing questionnaires for carers of patients with stroke, because it has established validity and reliability and assesses service characteristics important to carers. It also identifies experiences in services that elude global satisfaction ratings. It is a promising instrument for identifying service strengths and unmet needs.

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Work restrictions experienced by midlife family care-givers of older people: evidence from six European countries

This paper examines differences in work restrictions of midlife family carers of older people in terms of prevalence, gender and explanatory variables, in six European countries: Germany, Greece, Italy, Poland, Sweden and the United Kingdom. A sample of 2,897 carers aged 45–64 was extracted from the EUROFAMCARE (Services for Supporting Family Carers of Older People in Europe: Characteristics, Coverage and Usage) European project database, in order to analyse four possible work restrictions experienced in connection with the activity of care-giving: the reduction of working hours; giving up working; difficulties in career developments and forced occasional work. The results show that work restrictions are experienced differently between countries especially by women: they are reported to a higher degree in the United Kingdom, Germany and Greece, less so in Italy, and seldom in Poland and Sweden. Gender differences within countries are not so marked. Country differences are explained in the light of the different welfare regimes characterising the countries under investigation, in order to elucidate how policy makers may act to improve working carers' conditions through appropriate policies.

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Depression as a mediator: viewing caregiver well-being and strain in a different light

This study examines the relationship between caregiver characteristics and caregiver well-being as comprised of two components, activities of living and basic needs. The role of depression in predicting caregiver well-being is explored using a sample of caregivers of family members with chronic illness. Using a path-analysis model, multivariate findings suggest that depression explains 56% of the variance in activities of living and 64% in basic needs. Path analysis further identifies depression as a mediator between stress and well-being. Implications for research and practice are highlighted.

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Individual and Geographic Factors in the Formation of Care Networks in the UK

This paper argues that geography plays a crucial role in the formation of care networks. The role of informal carers will become increasingly important as the population ages and a better understanding of the drivers and outcome of these locational decisions is important. We use data from the British Household Panel Survey to explore the characteristics of common forms of care network; to investigate the factors that may influence the type of care network formed when a need for care is identified and to examine the role of space in the formation of care networks. Our results show the importance of both individual and geographic factors in network formation. Copyright (c) 2013 John Wiley & Sons, Ltd.

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Thai stroke patient caregivers: Who they are and what they need

Background and Purposes: Primary informal caregivers play a significant role in providing care to stroke survivors after having been discharged from the hospital. Our aims were to describe the characteristics of Thai stroke caregivers and to explore their needs while providing care to their stroke relatives. Methods: Using open-ended questions, we individually interviewed 20 caregivers of stroke survivors to identify their characteristics and their own needs. Additional field notes were made during all interviews. Results: Our findings revealed that the majority of Thai informal stroke caregivers in this study were female, mostly daughters, with the exception of 2 Thai primary stroke caregivers found to be nieces. The majority of caregivers provided care to their stroke relatives 24 h per day. The four major categories of informal rehabilitation were: physical, psychological, social, and spiritual rehabilitation activities. Assistance, information and social support were the three main needs of the caregivers. Conclusion: Based on these findings, appropriate nursing information and assistance focusing on rehabilitation and stroke caregivers’ needs should be provided to Thai stroke caregivers performing informal care to ensure that both patients and caregivers have the best possible quality of life.

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Longitudinal perspectives on caregiving, employment history and marital status in midlife in England and Wales

In this paper, we examine associations between employment history and marital status and unpaid care provision among those aged 40–59 in England and Wales. We used data from a large nationally representative longitudinal study, the Office for National Statistics Longitudinal Study. Initially based on a sample drawn from the 1971 Census, in 2001 this study included data on 110 464 people aged 40–59 of whom 5% provided 20 or more hours per week of unpaid care. We analysed associations between caregiving of this intensity and current employment, employment history, employment characteristics, marital status, and employment after childbearing. Among men, caregiving was associated with a history of lower levels of employment. The small group of men with a history of least employment were 70% more likely to provide care than those with a history of most employment. Among women, caregiving was associated with a history of non-employment, but there were no differences between those with fully engaged and partially engaged labour market histories. Analyses of a subset of data on women who had a child between 1981 and 1991 showed that those who had returned to full-time paid work by 1991 were over 50% less likely to later become caregivers. Some associations between employment characteristics and propensity to provide 20 or more hours per week of care were also identified. Those in public sector jobs and those previously in employment with a caregiving dimension were 20–30% more likely than other working women to provide unpaid care. These results suggest a continuing gender dimension in care provision which interacts with marital status and employment in gender-specific ways. It also suggests that implementation of strategies to enable those in midlife to combine caregiving and work responsibilities, should they wish to do so, should be an urgent priority.

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