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Stress and strain

The following resources examine the emotional costs of caring and the experience of related stress.

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The need to support caregivers during pediatric bone marrow transplantation (BMT): A case report

Objective: Pediatric bone marrow transplants represent a medically stressful, potentially traumatic experience for children and caregivers, and psychological support for parental caregivers is paramount to their long-term well-being. However, many medical centers do not have protocols in place to sustain caregiver well-being during these distressing experiences.

Method: We report on a case of a 10-month-old infant with Wiskott Aldrich Syndrome who was hospitalized for bone marrow transplantation.Result:We describe the significant burden that fell upon caregivers during and after a bone marrow transplantation.

Significance of results: This case helped guide our suggestions to improve care for caregivers. Several logistical hurdles could be overcome to alleviate some of these burdens. We suggest that a child psychologist or psychiatrist should be on patient care teams and be attentive to parental stress, impairments, or impediments to self-care, and signs of emergency of mental illness in this setting of medical trauma. Additionally, promotion of sleep hygiene and linkage to support systems can maximize resiliency. Finally, we believe that hospital administrators should partner with clinicians to facilitate routine support during highly stressful transitions of care.

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Perceived Caregiver Stress, Coping, and Quality of Life of Older Ugandan Grandparent-Caregivers

With the continued loss of lives due to HIV/AIDS in sub-Saharan Africa, grandparents bear the stress of caring for children affected by the epidemic, often with very limited resources. Yet, despite the acknowledgement that these older adults serve as the backbone and safety net of the African family in this HIV/AIDS era, very limited research has focused on investigating the specific health outcomes of caregivers in this region and how these changes in health status impact the overall quality of life of caregivers. This study highlights the stress perceived by Ugandan grandparent-caregivers, its impact on their overall quality of life, and the coping strategies they use to manage their stress. Thirty-two grandparent-caregivers (age 50 years and older) were recruited from urban and rural areas in Uganda and individually interviewed in 2016. Using constructivist grounded theory as the qualitative methodology, the narratives generated from the semi-structured, one-on-one interviews were audio-recorded, transcribed, and analyzed using both open and axial coding as well as reflexive and analytic memoing. Descriptions of caregiver stress (physical, emotional, financial, and social) were reported. Additionally, study findings uniquely explore the impact of the perceived stress on the grandparents' overall quality of life. Study findings provide a foundation upon which clinicians, researchers, and policy-makers can design and implement effective interventions to improve the health and quality of life of grandparent-caregivers in sub-Saharan Africa.

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Caring for Children Diagnosed with Autism Spectrum Disorder: Caregivers' Experiences

Although awareness about autism has increased in developed countries, more so than in developing countries, autism spectrum disorder (ASD) remains poorly understood by most South Africans, especially those in remote areas and in areas where research is limited. Furthermore, intervention services are often scarce or not available due to lack of knowledge amongst healthcare professionals. The current study aimed to explore caregivers' experiences of children with ASD in the Ehlanzeni District, Mpumalanga, South Africa. The study adopted a qualitative approach, and data was collected using semi-structured interviews, in which an interview guide was used. Twelve participants were selected purposively from the three different schools in the Ehlanzeni District and interviewed for the study. The data was analysed using thematic content analysis. The study adhered to ethical considerations. The findings of the study indicated that caregivers of children diagnosed with ASD experienced psychological stress; social stress; financial burden; lack of family support; and reported unavailability and accessibility of services. Therefore, information regarding a range of inexpensive interventions and educational programmes should be available for caregivers in order to reduce their psychological and social stress. Medicines should be available and accessible within the district to avoid caregivers having to travel long hours to access them, and to reduce their financial burden. Caregivers' support groups should also be established.

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Occupying 'in-hospitable' spaces: Parental/primary-caregiver perceptions of the impact of repeated hospitalisation in children under two years of age

The experience of having a child hospitalised is stressful and disrupts families in myriad ways; however, the experiences of parents/caregivers who encounter repeated admissions of a child with acute lower respiratory infections are under-researched. This project aims to explore these experiences, from a qualitative perspective, using the philosophical tenets of reflective lifeworld research. The research included 14 face-to-face interviews with parents, grandparents, or primary caregivers, of children who, whilst under two years of age, were admitted to hospital multiple times with a lower respiratory infection diagnosis. Many of the participants were from Māori or Samoan ethnic backgrounds. The findings of this single site study revealed that these parents/caregivers' experiences were characterised by feelings of powerlessness, offering descriptions of hospitals as harsh and difficult places to reside, they are 'in-hospitable'. The findings suggest that repeated hospitalisations created a cycle of stressful experiences that impacted both familial relationships and interactions with society. This study draws attention to this previously obscured population group, and calls health care practitioners and policy advisors to engage differently over issues involving families in similar positions.

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Parental feeding concerns of infants and young children with oesophageal atresia

Aim: Feeding problems have been described in young children with oesophageal atresia (OA). The primary aim of this study was to determine the specific concerns of parents and carers of infants and young children with OA regarding introducing solids and moving up to family foods.

Methods: A questionnaire was developed for parents and carers of infants and children with OA, aged 12 months to 6 years. Questionnaires were completed by 20 parents attending a multidisciplinary OA clinic between June 2016 and June 2017. Demographics and parental concern regarding feeding milestones were collected. The Montreal Children's Hospital Feeding Scale was completed.

Results: The majority of children (95%) had type C OA. Eleven (55%) parents agreed/strongly agreed that they were concerned about their child's feeding prior to the introduction of solids and about moving to more textured solids. The most common concern was choking and food impaction for both time points. Twelve (60%) parents agreed/strongly agreed that the majority of mealtimes in their child's first 1-2 years of life were stressful. Thirteen (65%) parents reported avoiding particular foods due to their child's OA. The majority of children (n = 17) had no feeding difficulty according to an objective scale, and the rest had minor difficulty.

Conclusions: Parental concern around feeding still exists in infants and children without a severe feeding difficulty. Multidisciplinary involvement, including a dietitian and speech pathologist, from an early age is important for infants and children with OA.

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Carer stress in Fetal Alcohol Spectrum Disorders: the implications of data from the UK national specialist FASD clinic for training carers

Medical research literature is increasingly reporting high levels of stress among carers of children with Fetal Alcohol Spectrum Disorders (FASD). However, while there are a growing number of evidence-based innovations around the world for carer stress generally, there are no programmes in the UK for those looking after children with FASD. The aim of this study, therefore, is to provide an up-to-date profile of stress faced by these carers, to explore its sources and suggest directions for service development. Seventy-one carers and their child with FASD participated in a study designed for this purpose. Parental stress levels were assessed using the Parental Stress Index (PSI) and the characteristics of their children – cognition, adaptive behaviour, sensory processing and externalising behaviour function – by a battery of measures. Further correlational and regression analyses were carried out to explore the nature and source of the carer stress identified. When the levels of stress in families was measured, all six Child Domains on the PSI showed results that were above the clinically significant cut-off for high stress, while all seven Parent Domains were below this threshold. Significant associations were found between the PSI and child behaviours, but generally the Parent Domain and Child Behaviours were not correlated. Regression analysis found executive functioning difficulties in children to be the main predictors of carer stress but sensory difficulties were not significant, despite 83% of the children having elevated problems of this kind. Total stress scores among carers of children with FASD were elevated and far exceeded the threshold score on the PSI, suggesting a need for 'further professional consultation'. Consideration of parental needs and the development of evidenced-based interventions specific for these carers are highlighted as areas for future development.

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The Implementation of Parent–Child Interaction Therapy for the Treatment of Tourette Syndrome and Disruptive Behavior

A diagnosis of Tourette syndrome (TS) can confer a plethora of negative outcomes including impaired psychosocial functioning, academic difficulties, disruptive behavior, and mood dysregulation. Further, children diagnosed with TS can engender immense amounts of burden and stress experienced by their caregivers which can put strain and tension on the parent–child relationship. Uncovering efficacious treatments for improving the quality of life for children diagnosed with TS and their families represents both a great challenge as well as a chief concern for professionals working with this population. The present case study describes the provision of parent–child interaction therapy for addressing behavioral problems in a 5-year-old boy diagnosed with TS. Results suggest improvements in child compliance, decreases in disruptive behaviors, and decreases in certain symptomatology associated with TS. Treatment implications for working with youth with TS are described in detail. 

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Experiences of Pediatric Parenting Stress and Family Support for Caregivers of Children with Special Health Care Needs or Developmental Disabilities

Serving children with special health care needs (SHCN) or developmental disabilities (DD) and their families is an important public health issue (Healthy People, 2020). The prevalence of children with special health care needs or developmental disabilities is significant and increasing (Boyle et al., 2011). Caregivers of children with SHCN or DD and their families demand clinical and research attention given the potential range of health and well-being outcomes that are associated with their children’s developmental or medical complexity. The purpose of this dissertation study was to use a quantitative descriptive research design to examine the experiences of pediatric parenting stress and family support for a sample of caregivers of children representing diverse special health care needs or developmental disabilities. Data were collected at four agencies that provide a range of services to children with SHCN or DD and their families. The data for 167 caregiver participants were used for the preliminary and main statistical analyses. Statistical analyses including pearson product moment correlations, independent-samples t-tests, one-way analysis of variance (ANOVA) tests, internal consistency reliability analyses, and factor analyses. Present study findings revealed that (a) the Pediatric Inventory for Parents (PIP) and Family Support Scale (FSS) measures did not appear to be internally consistent for this study sample; (b) the existing PIP and FSS factor structures did not fit the present study data well; (c) the present study sample had higher levels of pediatric parenting stress and lower levels of family support overall as compared to previous study samples of caregivers for children with chronic conditions; (d) the current study sample’s experiences of pediatric parenting stress and family support differed significantly by several caregiver, child, and family correlates; and (e) the current study sample’s levels of pediatric parenting stress and family support had a positive, significant association. Study findings emphasized the potential roles of stress and support in the caregiving experiences for children with SHCN or DD. Recommendations for further study of this caregiving population and their families are discussed.

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Examining the experiences of fathers of children with a life-limiting illness

Families who have a child diagnosed with a life-limiting illness (LLI) face substantial challenges resulting from the complexity and devastating impact of the condition and potential closeness of death. The experiences of fathers of a child with LLI have been understudied; therefore, this study explored the stresses, experiences, and strategies of these fathers, including their perceptions about support needs. Based on grounded theory, in-depth semi-structured interviews were conducted with 18 fathers of children with LLI. Six fathers had experienced the death of their child. The overarching themes were stresses, means of coping, and perceived needs for support. Generally. fathers in this study struggled relative to discursive and internalized notions of fathers as providers and protectors for their children, combined with an inability to ease their child's vulnerability to LLI. Participants were engaged in the care of their child with LLI, but several felt marginalized by health care providers in care planning and staff/family communication. Some fathers recognized and valued their support network while others had few supports. Some described personal growth and desired to help other fathers. Practice implications and recommendations include renewed application of family-centered care, overcoming presumptions about fathers' roles, and recognizing the impact of LLI beyond physical health.

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Perceived Stress among Caregivers of Children with Autism Spectrum Disorder: A State-Wide Study

Background: Caregivers of children with autism spectrum disorder (ASD) experience increased stress and more significant negative caregiving consequences than those with typically developing children. There is a lack of studies specifically focusing on stress among caregivers with ASD children in Asian countries. The current study examines levels of perceived stress and factors associated with it among caregivers in Kelantan, Malaysia.

Methods: In a cross-sectional study, the Malay version of the Perceived Stress Scale (PSS) was administered to 227 caregivers of children with ASD. The caregivers were recruited from ASD databases in four tertiary hospitals in Kelantan and a meeting was set up during the child's follow-up in the clinic. Multiple linear regression analyses were applied to determine the predictors of perceived stress.

Results: The mean total perceived stress score was 20.84 (4.72). This was considered higher than average. Higher perceived stress was significantly predicted among caregivers who live far from the health institution, caregivers who do not own transportation to bring the child to the treatment center, and caregivers who have an ASD child with a learning disability.

Conclusion: Caregivers of an ASD child perceived significant stress while taking care of their children. Institutions should alleviate the factors that were predicted to increase the caregivers' perceived stress to improve the quality of the lives of children and ASD families as a whole.

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Family support and family and child-related outcomes among families impacted by disability in low- and middle-income countries: A scoping review

There is a growing interest in understanding the relationship between family support and family or child-related outcomes in high-income countries. However, this has received little attention in low- and middle-income countries. The purpose of this review was to explore the relationship between family support and family and child-related outcomes among families affected by disability in low- and middle-income countries. We conducted a scoping review of five databases using search terms related to 'family', 'support', 'child', and 'disability'. A total of 13 articles met the inclusion criteria. Families of children with disabilities received most of their support from informal sources (e.g. immediate family members, friends, and parents support groups). Parental stress was most often evaluated as the family outcome and was negatively linked to emotional support and childcare assistance from immediate family members. Movement and mobility therapy offered by rehabilitation professionals was found to improve children's walking patterns. Positive attitudes from community members were key facilitators to participation of children with disabilities in social activities. The review calls for urgent attention to research in low- and middle-income countries, particularly the extent of support families are receiving from government-led support systems.

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Experiences of children with special educational needs and disabilities and their families in the United Kingdom during the coronavirus pandemic

Purpose: The purpose of this paper is to outline the experiences of children with special educational needs and disabilities (SEND) and their families during the coronavirus pandemic.

Design/methodology/approach: This paper draws on research gathered and collated by three different organisations working with families of children and young people with SEND.

Findings: There were a number of common findings across all three surveys. In particular: the rapid collapse of external support for children and families; the reduction/withdrawal of support exacerbated the stress and exhaustion already experienced by many families; it proved very difficult to establish home learning and get adequate support from schools; there was little government recognition of families' vulnerability and need for support; and, paradoxically, a significant minority of children and families reported increased well-being.

Originality/value: Findings carry clear implications both for the provision of child and family support during any further lockdowns and, more generally, in respect of government policy and funding of family support. 

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Interpersonal Dyadic Influences of Pain Catastrophizing Between Caregivers and Children With Chronic Pain

Objectives: Pain catastrophizing is an important predictor of pain-related outcomes. Caregiver and child levels of catastrophizing about child chronic pain are associated cross-sectionally, yet predictive associations testing interpersonal influences within caregiver-child dyads are lacking. The present study tested caregiver and child influences on partner catastrophizing about child pain over a period of 1 month following initiation of interdisciplinary pain treatment and examined whether the change in pain catastrophizing was associated with child pain interference.

Materials and Methods: A total of 113 caregiver-child dyads (Mage=14.41) completed measures at the time of initiating care at a pediatric tertiary outpatient pain management clinic (baseline) and ∼1 month later. Caregivers and children independently reported on catastrophizing about child pain and child pain interference at baseline and 1-month follow-up.

Results: Caregiver and child pain catastrophizing decreased over 1 month following initial interdisciplinary pain evaluation, with average scores remaining in the moderate to high range. Change in caregiver, but not child, catastrophizing about child pain was predicted by partner baseline pain catastrophizing. Decreases in catastrophizing about child pain were associated with within-person improvement in ratings of child pain interference.

Discussion: In the short period following initial pain evaluation, caregivers and children evidenced reductions in pain catastrophizing, which were associated with increased child function. Findings highlight the important role of child cognitive-affective responses to pain in influencing caregiver catastrophizing about child pain. Understanding the individual contributions children and caregivers make to interpersonal pain processes will inform future family-level clinical interventions.

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New Approach to Pediatric Treatment Planning to Support Caregivers Living with Adversities

Pediatric practitioners are called upon to identify adverse childhood experiences and social determinants of health, given the growing evidence of the prevalence, lifelong risk, and potentially preventable impact of adversities. Caregivers serve as a strong mediator of how adversities affect children, with toxic stress resulting from the lack of a buffering caregiver in the context of prolonged stress activation. In the context of family centered care, pediatric practitioners who identify adversities or diagnose related health conditions, will need to be adept at modifying treatment plans to respect the caregiver's circumstances. Pediatric practitioners will need to consider how adversities affect the caregiver's well-being and capacity to provide protective, buffering relationships to prevent toxic stress, and access to recommended treatments. This article proposes a reconsideration of traditional treatment planning to be adversity-informed to provide family centered care. 

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An Examination of the Psychometric Properties and Validation of the Family Resource Scale for Families Seeking Assistance With Their Child's Behavioral Difficulties

Psychometric properties of the 30-item Family Resource Scale (FRS) were examined in a sample of families seeking assistance for their child's behavioral difficulties (N = 300). The FRS is a measure that assesses the adequacy of family resources across several contexts including intra-family support and personal resources. Our analyses supported a modified 29-item four-factor solution (basic needs, extra money and time, time for family, and essential) compared with the seven-factor solution provided by the developers. Results showed that families' perception of their resources as adequate across all domains was associated with better family functioning and less caregiver strain. Combined, our findings suggest modifications to the existent structure of the FRS.

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Parenting Stress Among Caregivers of Children With Bipolar Spectrum Disorders

Caregivers of psychiatrically impaired children experience considerable parenting stress. However, no research has evaluated parenting stress within the context of pediatric bipolar spectrum disorders (BPSD). Thus, the aim of this investigation was to identify predictors and moderators of stress among caregivers in the Longitudinal Assessment of Manic Symptoms study. Participants included 640 children and their caregivers in the Longitudinal Assessment of Manic Symptoms cohort. Children had a mean age of 9.4 ± 1.9 years (68% male, 23% BPSD); parents had a mean age of 36.5 ± 8.3 years (84% mothers). Children with BPSD had more service utilization, psychiatric diagnoses, mood and anxiety symptoms, and functional impairment but fewer disruptive behavior disorders. Caregivers of children with BPSD were more likely than caregivers of children without BPSD to have a partner, elevated depressive symptoms, antisocial tendencies, and parenting stress (Cohen's d = .49). For the whole sample, higher child IQ, mania, anxiety, disruptive behavior, and caregiver depression predicted increased parenting stress; maternal conduct disorder predicted lower stress. Child anxiety and disruptive behavior were associated with elevated caregiver stress only for non-BPSD children. Caregivers of children with BPSD experience significant burden and thus require specialized, family-focused interventions. As stress was also elevated, to a lesser degree, among depressed caregivers of children with higher IQ, mania, anxiety, and disruptive behavior, these families may need additional supports as well. Although parents with conduct/antisocial problems evidenced lower stress, these difficulties should be monitored. Thus, parenting stress should be evaluated and addressed in the treatment of childhood mental health problems, especially BPSD. 

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Readiness for Hospital Discharge, Stress, and Coping in Mothers of Children Undergoing Cardiac Surgeries: A Single-Center Prospective Study

Objectives: To examine the relationship between stress, coping, and discharge readiness in mothers of children undergoing congenital heart surgeries.

Design: Quantitative descriptive study at three time points: pre surgery (time point I), day of hospital discharge (time point II) and 2 weeks following discharge (time point III).; Setting: Tertiary care pediatric hospital in Singapore.

Participants: One hundred mothers whose children had undergone congenital heart surgeries.

Measurements and Main Results: Data collection included self-reported questionnaires of the Pediatric Inventory for Parents and the Coping Health Inventory for Parents across three time points. Readiness for Hospital Discharge Scale was administered at hospital discharge (time point II). The utilization of health services and support was reported at post discharge (time point III). One-hundred mothers participated in this study between May 2016 and July 2017. Their mean age was 35.8 years (SD = 7.0), and the mean age of their children was 3.7 years (SD = 4.6). There was significant reduction in mean stress difficulty (Pediatric Inventory for Parents) of mothers (F = 4.58; p = 0.013) from time point I to III. No significant changes were found in the overall mean coping score (Coping Health Inventory for Parents) of mothers across time. The mean overall score for the readiness for discharge (Readiness for Hospital Discharge Scale) of mothers at hospital discharge was 207.34 (SD = 29.22). Coping through family integration subscale and communication stress predicted discharge readiness of mothers (adjusted R = 0.11; p = 0.034). Mothers who reported higher overall stress (Pediatric Inventory for Parents) 2 weeks post discharge were more likely to call a friend or family member, visit the emergency department, or have their child readmitted to hospital following hospital discharge.;

Conclusions: We identified coping by family integration and communication-related stress as predictors of readiness for discharge. Strategies targeted at communication and family integration for discharge preparation may improve caregivers' readiness for hospital discharge.

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Impact of Respiratory Syncytial Virus-Confirmed Hospitalizations on Caregivers of US Preterm Infants

This study assessed the impact of respiratory syncytial virus-confirmed hospitalizations (RSVH) on caregivers of high-risk preterm infants. Caregivers for infants born at 29 to 35 weeks' gestational age and hospitalized for confirmed RSV disease responded to measures of self-rated and perceived infant stress (1-7; 7 = very stressful), perceived infant health (0-100; 100 = best imaginable health), and productivity impairment. Data were collected at hospital discharge through 1 month post-discharge. Caregiver responses indicated high stress levels, poor health, and productivity loss were reported at discharge; however, steady improvements were seen through 1 month post-discharge: caregiver-rated stress (from 6 to 2), infant stress (5 to 1), caregiver-perceived infant health (64 to 84), and productivity loss (mothers: 91% to 31%; fathers: 81% to 18%). Qualitative results indicated emotional impact, family routine disruption, financial concerns, and medical concerns persisted at 1 month post-discharge. This study found the caregiver burden of RSVH persists at least 1 month beyond discharge.

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Higher levels of caregiver strain perceived by Indian mothers of children and young adults with cerebral palsy who have limited self-mobility

Aim: Describe and compare the caregiver strain experienced among Indian mothers of children and young adults with cerebral palsy (CP) living in low resource settings.

Methods: 62 consecutive children and young adults with spastic CP (mean age 6.0 +/- 4.5, range 2-21) and their parents were recruited from an outpatient physiotherapy department for this cross-sectional study. Ability to walk was classified using the Gross Motor Function Classification System and mother's caregiver strain was measured using caregiver strain index (CSI).

Results: Mothers of children and young adults who have limited self-mobility perceived higher caregiver strain (mean CSI score 12.0 +/- 1.3, p <0.05) than mothers of children who can walk (mean CSI score 4.5 +/- 3.0, p <0.05). All 46 mothers of children and youth in GMFCS levels IV and V reported high levels of caregiver stress compared with only three of 16 mothers of children and youth who walk (levels I and II).

Conclusions: Physiotherapists and occupational therapists serving children and youth with CP are encouraged to partner with families to identify goals for ease of caregiving, activity, and participation at home and in the community.

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Stress among the caregivers of mentally disabled children visiting a rehabilitation centre in Chennai, Tamil Nadu - A cross-sectional study

Caregiving is a complex health care activity, from an informal family level activity; it is becoming a major part of health care. In India, family members are mostly caregivers for persons with mental disabilities. The present study assessed the stress among the caregivers of mentally disabled children (Autistic Spectrum Disorder, Intellectual Disability, and Attention Deficit Hyperactivity Disorder) and found the association between stress and selected socio-demographic variables. This was an institutional based cross-sectional study with a duration of six months, i.e. from January 2019 to June 2019. This study was conducted among the caregivers availing services (therapies and follow-ups) at the National Institute for Empowerment of Persons with Multiple Disabilities, Chennai, Tamil Nadu. The level of stress was assessed using the Kingston Caregiver Stress Scale. This study was conducted with time-bound complete enumeration method, by which data from 101 participants were collected. The results of this study showed that 64.3% of the caregivers had the severe level of stress, 21.7% of the caregivers had a moderate level of stress and 13.8% of the caregivers had mild stress. Hence, it can be concluded that caregiver's stress is an important element to determine the burden and the unexplained psychological pressure a caregiver holds onto.

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Impact of Parenting a Child with Cerebral Palsy on the Quality of Life of Parents: A Systematic Review of Literature

Purpose: The implications of parenting a child with cerebral palsy (CP) are multifaceted, as parents have to cope with their child's functional limitations and specific needs, and prepare for the possibility of long-term dependence. There has been significant research on the consequences of managing these parenting tasks. This article reviews the literature on the effects of parenting children with CP, and summarises the related factors. Methods: A systematic search of online databases was conducted and, based on the reference lists of selected articles, further studies were identified. Thirty-six articles that met the inclusion criteria were analysed.

Conclusion & Implication: Parents of children with CP were found to have lower quality of life, associated with high levels of stress and depression, due to factors such as child behaviour and cognitive problems, low caregiver self-efficacy and low social support. The implications of these findings in relation to the planning and development of interventions addressing the family as a whole are discussed. The aim is to enhance parents' competence and resources so that they are better able to cope with the demands of parenting their children.

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The Parent Experience of Caring for a Child with Mitochondrial Disease

Introduction: Mitochondrial disease is a spectrum of progressive genetic disorders resulting from dysfunctions of cellular metabolism in the mitochondria that greatly compromise the lives of affected individuals, who are often children.

Purpose: This study described the parent experiences unique to caring for a child with mitochondrial disease.; Methods: Internet surveys were made available to parents of children with a known mitochondrial disease. Surveys included demographic items and two questionnaires: Parent Experience of Child Illness (PECI) and Pediatric Inventory for Parents (PIP). Descriptive data were collected and correlations calculated to determine relationships between the parent experience and stress.

Results: The majority of participants (n=231) were mothers (95%) of children with mitochondrial disease around the age of 10 years (M=9.85). Elevated scores were found in parent adjustment illness-related concerns regarding Guilt and Worry (M=2.30, SD=.650), Sorrow and Anger (M=2.09, SD=.730), Long-term Uncertainty (M=2.56, SD=.690), and Emotional Resources (M=2.36, SD=.615). Scores indicated elevated feelings of stress in terms of both difficulty and frequency. Significant correlations (p<0.01) were found between parent illness-related concerns and parenting stress.

Conclusions: The results of this study suggest that parents of a child with mitochondrial disease feel a burden of responsibility that exceeds the typical caregiver role, see their child as fragile, and have concerns about their child's future. Identification of these concerns can assist nurses to better meet the needs of these parents and families. 

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The parenting experiences and needs of Asian primary caregivers of children with autism: A meta-synthesis

Parents of children with autism are faced with higher risks of unemployment, divorce, and poorer mental health than parents of children with other disorders. Such parenting stress can be further exacerbated by cultural and environmental factors such as the more conservative and collectivistic Asian values. Therefore, this review identifies and synthesizes literature on the parenting experiences and needs of Asian primary caregivers of children with autism using a critical interpretive method. A qualitative meta-summary was conducted. Seven electronic databases (CINAHL, Embase, ProQuest, PsycINFO, PubMed, Scopus, and Web of Science) were searched from each database's date of inception to November 2018. In total, 44 studies were included in this review. Thirteen studies examined Asian immigrant parents' experiences, and 31 studies were done among Asia-based parents. Six domains were identified: "personal parenting journey"; "adaptation and coping strategies"; "family, community, and social support"; "experiences with healthcare, education, and social services"; "future hopes and recommendations"; and "unique experiences of immigrants." The distinctive influence of religious beliefs, cultural values, and environmental factors on Asian parenting experiences were discussed, and recommendations were proposed to better meet the needs of parents with autistic children. 

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Experiences of caregivers of children with inherited metabolic diseases: a qualitative study

Background: We sought to understand the experiences of parents/caregivers of children with inherited metabolic diseases (IMD) in order to inform strategies for supporting patients and their families. We investigated their experiences regarding the management of disease, its impact on child and family life, and interactions with the health care system.

Methods: From four Canadian centres, we conducted semi-structured telephone interviews with parents/caregivers of children with an IMD who were born between 2006 and 2015 and who were participating in a larger cohort study. Participants were selected with the aim of achieving a diverse sample with respect to treatment centre, IMD, and age of the child. Interviews emphasized the impacts of the disease and its treatment on the child and family and explicitly queried perceptions of interactions with the health care system. We identified emergent themes from the interview data.

Results: We completed interviews with 21 parents/caregivers. The 21 children were aged <1 to 7 years old with IMD that included amino acid disorders, urea cycle disorders, fatty acid oxidation disorders, and organic acid disorders or 'other' IMD. Most parents reported that they and their families had adapted well to their child's diagnosis. Parents used proactive coping strategies to integrate complex disease management protocols into routine family life. An important source of stress was concern about the social challenges faced by their children. Participants reported positive interactions with their most involved health care providers within the metabolic clinic. However, they reported challenges associated with the health care system outside of disease-specific metabolic care, when encountering systems and providers unfamiliar with the child's disease. 

Conclusions: The successful use of proactive coping strategies among parents of children with IMD in this study suggests the potential value of promoting positive coping and is an important direction for future study. Parents' social concerns for their children were important stressors that warrant consideration by health care providers positioned to support families. Our results with respect to experiences with care highlight the important role of specialized metabolic clinics and point to a need for better coordination of the care that takes place outside the disease-specific management of IMD.

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Factors that affect the relationship in the family that takes care of a child with disability: Pilot study

Family relationships are related to the cohesion between family members and their interaction and the ability to solve everyday problems and crisis situations. The family is influenced by internal and external factors that affect relationships between family members. These factors also affect intimate life of partners. The family naturally faces a developmental and situational crisis. These crises are milestones that can impact the future life of the family. In the family which takes care of a child with disabilities, these milestones are accented by cumulative crises and daily confrontation with child's disability. The paper provides an overview of these crisis factors, which may affect the relationships within family members. The data were collected using a pilot survey. The sample were parents of a child with disability. The content analysis of records from semi-standardized interviews with parents and observation realized during special pedagogical interventions represents a list of the most common stressors and situational factors affecting family relationships of the target group that may result in a crisis. The common developmental crises, caused by life changes and the requirements for social role acceptance, are being strengthened by the long-lasting effects of stressors on families of children with disability. This is in particular the role of the caregiver, the demands related to the care of a child with disability, family cohesion and coping strategies. The results of the pilot study will be used in pre-research of a dissertation.

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Relationship Satisfaction and Dyadic Coping in Couples with a Child with Autism Spectrum Disorder

Dyadic coping strategies may play a pivotal role in relationship satisfaction and explain why some couples adapt positively to the challenges associated with raising a child with ASD and others do not. Survey data from 127 caregivers of a child with ASD were used in generalized estimating equation analyses to investigate the factors associated with relationship satisfaction, including socio-demographics, parenting stress and dyadic coping. Results showed that over two-thirds of the sample reported satisfaction, which was associated with low parenting stress, increased use of positive and decreased use of negative dyadic coping strategies. Positive dyadic coping was found to have a greater influence than negative dyadic coping, supporting a strengths-based approach to interventions promoting family resilience.

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Caregiver responses to early cleft palate care: A mixed method approach

Objective: This study sought to understand caregivers' (CGs') responses to early cleft lip/palate care for their infants.

Method: A prospective, mixed methods multicenter longitudinal study was conducted among CGs (N = 118) seeking treatment for their infants' cleft lip and palate or cleft lip only at 1 of 6 cleft treatment centers in the United States. Participants were in 1 of 2 treatment groups: traditional care only or nasoalveolar molding (NAM) plus traditional care. The CGs completed semistructured interviews and standardized questionnaires assessing psychosocial well-being and family impact at 3 time points: the beginning of treatment (∼1 month of age), prelip surgery (∼3-5 months of age), and postpalate surgery (∼12-13 months of age). Multilevel modeling was used to longitudinally assess CGs' psychosocial outcomes.

Results: Although the first year was demanding for all CGs, NAM onset and the child's lip surgery were particularly stressful times. CGs used optimism, problem-solving behavior, and social support to cope with this stress. Qualitatively, CGs' ability to balance cleft treatment demands with their psychosocial resources and coping strategies influenced family adaptation. Qualitative and quantitative results indicated CGs of NAM-treated infants experienced more rapid declines in anxiety and depressive symptoms and better coping skills over time than CGs whose infants had traditional care. 

Conclusion: CGs of NAM-treated infants experienced more positive psychosocial outcomes than CGs whose infants had traditional care. Results from the mixed model support the family adjustment and adaptation response model as used in pediatric chronic condition research.

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Parents' experiences of living with, and caring for children, adolescents and young adults with Mucopolysaccharidosis (MPS)

Background: Many rare diseases of childhood are life-threatening and chronically debilitating, so living with a rare disease is an on-going challenge for patients and their families. MPS is one of a range of rare inherited metabolic disorders (IMDs) that come under category 3 of life-limiting conditions, where there is no curative treatment available at present. Although the study of rare diseases is increasingly novel, and of clinical importance to the population, the lack of empirical data in the field to support policy and strategy development is a compelling argument for further research to be sought.

Methods: This qualitative hermeneutic phenomenological study explored and interpreted Irish parents' experiences of living with and caring for children, adolescents and young adults with MPS and the impact of these diseases on their day to day life. A purposively selected sample of parents' attending the Irish National Centre for Inherited Metabolic Disorders was invited to participate in serial in-depth interviews.

Results: A total of eight parents' (n = 8) of children with a range of MPS disorders aged from 6 months to 22 years (MPS I Hurler syndrome, Scheie syndrome), MPS II (Hunter syndrome), MPS III (Sanfilipo syndrome) and MPS VI (Maroteaux-Lamy syndrome) were interviewed at three time points over a 17 month period. The main themes identified during data analysis were described as living with MPS, living with a genetic rare disease, the stigma of a rare condition, MPS as encompassing multiple diseases, Unknown future, hospital vs. home, experience of waiting, a tough road ahead, and things in their day-to-day life with MPS. They spoke of their child's Quality of Life (QoL), their healthy children's wellbeing, and for some, the impact on their own physical and psychological wellbeing. They also reflected on issues of stigmatisation and isolation in their experience of living with a child with a rare disorder.

Conclusion: This study's findings reflect the wider literature on the impact of rare diseases, which have also indicated how caring for someone with MPS, a condition that is chronic, progressive and degenerative can impact on all dimensions of the family's life. Analysis of the findings using a hemenutic pheomenology perspecitve suggest that parents of children with MPS experience multiple cyclical movements across all five human lived existential experience, and they gradually develop ways to incorporate MPS in their day to day life. It was also evident that all the carers in this study experienced a range of uncertainties, with parents using terms such as 'no man's land' and 'future is unknown' to describe their world.

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Communication Challenges in Korean Families Coping With Adolescent Cancer

PURPOSE: To examine the family communication experience of Korean adolescents with cancer and their parents, including how adolescents and their parents verbally share feelings and concerns related to the adolescent's cancer diagnosis with one another, and how emotional communication affects parent-adolescent relationships and the family's coping abilities.

PARTICIPANTS & SETTING: 20 participants (10 adolescents with cancer, aged 13-19 years, and their parents) at a university-affiliated hospital in Seoul, South Korea.

METHODOLOGIC APPROACH: Individual, semistructured interviews were conducted and analyzed based on a qualitative descriptive approach. Conventional content analysis was employed to analyze the data.

FINDINGS: The overarching core theme developed from the content analysis and theme generation was "I cannot share my feelings." This core theme is represented by three main themes: (a) restricted topics that I can share; (b) being closer, but a lack of depth; and (c) effects of restricted topics on their coping.

IMPLICATIONS FOR NURSING: Increased need for nursing awareness and culturally relevant assessment of emotional family communication needs between Korean adolescents with cancer and their family caregivers are necessary. 

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Lived experience of having a child with stroke: A qualitative study

Objective: To assess the lived experience of parents whose child has suffered a stroke.

Methods: A qualitative study model was chosen, comprising in-depth interviews with parents separately or altogether. A semi-structured interview guide was used. Interviews were audio-recorded, transcribed verbatim and analysed using constant comparison and content analysis. Participant checking was performed. Thirteen families of children aged 1 month to 17 years, having suffered ischaemic or haemorrhagic arterial stroke within one to five years, were recruited. Interviews were conducted within home setting.

Results: After fourteen interviews, data saturation was met and six main narrative themes were identified, underlining a common path of stroke lived experience: brutality of diagnosis, lack of information regarding disease condition, feeling of abandonment after discharge from hospital, focus on functional recovery, late awareness of cognitive disorders, and need for psychological support and family adaptation.

Conclusion: This is the first qualitative study reporting lived experience of childhood stroke caregivers. In line with other qualitative studies exploring the feelings of parents coping with severe neurological conditions of childhood, our results advocate the need for evaluation of family centred health interventions. 

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Caregiver Stress, Coping Strategies, and Support Needs of Mothers Caring for their Children Who Are Undergoing Active Cancer Treatments

The diagnosis of childhood cancer not only affects the life of the child but also impacts the lives of the caregivers as well. This study aims to explore the caregiving stress, coping strategies, and support needs of mothers caring for children/adolescents with cancer during the active treatment phase. Individual semi-structured interviews were conducted, and two authors independently and thematically analyzed data. Caregiving mothers went through a process of emotional changes and a change in lifestyles when their children were diagnosed with cancer and undergoing treatments. It is important to ensure that caregiving mothers of children/adolescents with cancer are well supported by family, friends, and healthcare professionals. Healthcare professionals can develop informational booklets on cancer treatment protocols and work together with mothers. Parent support groups and plans for psychoeducational and spiritual care programs for mothers as forms of informational and emotional support may also be established.

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Parental psychopathology and expectations for the futures of children with autism spectrum disorder

Background: The influence of parental psychopathology and parental expectations on child well-being is well documented among typically developing populations. However, to date little research has examined the relationship among these factors in families of children with autism spectrum disorder (ASD). This study examines an observed relationship between parental psychopathology and expectations in families with children with ASD in the light of research in other populations.; Method: Twenty-four parents of children diagnosed with ASD were assessed for symptoms of psychopathology. Parents completed measures of child ASD severity as well as their expectations for possible outcomes of their child.

Results: Two main effects were found: higher parental psychopathology and ASD severity were both related to lower expectations. Interaction of ASD severity and parental psychopathology in relation to parent expectations was not observed.

Conclusion: These results emphasize the necessity of providing services not only to individuals diagnosed with ASD, but to caregivers as well.

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"Over time it just becomes easier…": parents of people with Angelman syndrome and Prader-Willi syndrome speak about their carer role

Purpose: This study investigated two of the stresses experienced by parents caring for offspring with Angelman syndrome (AS) and Prader-Willi syndrome (PWS) in Western Australia, and identified their coping strategies.

Methods: Parents of 19 offspring with AS and PWS participated in the Family Stress and Coping Interview which provides a stress level score, and a discussion of stressors and coping methods associated with 24 life situations, two of which are reported. All text was examined using directed content analysis.

Results: Family carers (14/19) reported high stress associated with the initial diagnosis of AS or PWS in their offspring; and finding time for themselves. Stressors identified included lack of quality information about the disorder, time constraints and physical and emotional tiredness. Parents adopted a variety of coping strategies, including learning about the disorder, accepting the situation, seeking instrumental and social supports and dealing with problems.

Conclusions: No specific coping strategy was associated with reduced stress. However, parents felt that accurate and timely information during the diagnostic period helped. Parents used family and community support although there were difficulties accessing respite care. It is advised that government agencies, service providers, family members and peer support associations should provide practical and emotional support to assist the parents of offspring with AS and PWS, and indeed any form of intellectual disability, across the lifespan.

Implications for Rehabilitation: Long-term caring for offspring with AS or PWS can involve considerable stress for parents. Stress has been associated with poorer health outcomes for parental carers. Parents need a variety of practical and emotional supports to cope with stress, including timely access to information.

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Parental Stress as a Child With Diabetes Transitions From Adolescence to Emerging Adulthood

This study examined parental and caregiver distress among families caring for children with type 1 diabetes as the child transitions into Emerging Adulthood. More than 96 hours of semistructured interviews were conducted with 19 adult caregivers including parents, grandparents, and other adult family members of 10 children. Each research partner participated in multiple face-to-face, 1- to 1.5-hour long-evolving interviews over the course of 4.5 years. Paradoxically, caregivers were found to experience significant increase in distress as their child with diabetes entered the developmental stage of Emerging Adulthood, 18 to 25 years old, by which time they should be masters of self-care, and parental distress should begin to decline. This increase in familial distress was associated with the emerging adults leaving the home, being unable to maintain an acceptable level of self-care, and experiencing declining health, frequent visits to the emergency department, and repeated hospitalizations. These findings suggest that parental distress from caring for a child with diabetes continues as the child ages, matures, and transitions into adulthood and may be exacerbated when the emerging adult with type 1 diabetes leaves the home and the direct observation and care of the parent.

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Experiences of Tourette Syndrome Caregivers With Supportive Communication

The experiences of Tourette syndrome (TS) caregivers with supportive communication are examined in this qualitative investigation. TS is a childhood-onset neurodevelopmental disorder marked by a combination of involuntary verbal and motor tics lasting for more than 1 year. Although individuals are impacted the most by TS, the stress for caring for a child with TS takes an emotional and physical toll on the caregiver. Eleven participants shared their experiences with receiving supportive communication by taking part in semi-structured interviews. Data analysis yielded three themes: (a) TS caregivers describe their experiences as a struggle; (b) they seek out specific social support from friends and families; and (c) they frequently receive social support that increases instead of reducing stress.

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The effect of the Hambisela programme on stress levels and quality of life of primary caregivers of children with cerebral palsy: A pilot study

Background: Caregivers of children with cerebral palsy (CP) are at risk of having high stress levels and poor quality of life (QOL) which could have a detrimental effect on themselves and their children. Taking caregivers' well-being into consideration is therefore important when providing rehabilitation to children with CP. Interventions to mediate primary caregiver stress and QOL using an educational tool have not been tested in this population in South Africa. Objectives: The aim of this study was to determine the effect of a group-based educational intervention, Hambisela, on stress levels and QOL of primary caregivers of children with CP in Mamelodi, a township in Gauteng, South Africa.

Method: Eighteen primary caregivers of children with CP participated in a quasi-experimental pretest–post-test pilot study. Hambisela, a group-based educational intervention, was carried out once a week over 8 consecutive weeks. Caregiver stress and QOL were assessed before and after the intervention using the Parenting Stress Index-Short Form (PSI-SF) and the Paediatric Quality of Life-Family Impact Module (PedsQLTM-FIM). Sociodemographic information was assessed using a demographic questionnaire. The Gross Motor Function Classification System (GMFCS) was used to assess the gross motor level of severity of CP in the children.

Results: Data were collected for 18 participants at baseline and 16 participants at follow-up. At baseline, 14 (87.5%) participants had clinically significant stress which reduced to 11 (68.8%) at follow-up. There was no significant change in primary caregiver's stress levels (p = 0.72) and QOL (p = 0.85) after the Hambisela programme. Higher levels of education were moderately associated with lower levels of primary caregiver stress (r = −0.50; p = 0.03).

Conclusion: Most primary caregivers in this pilot study suffered from clinically significant stress levels. Hambisela, as an educational intervention, was not effective in reducing the stress or improving the QOL in these primary caregivers of children with CP. Future studies with a larger sample size are needed to investigate the high stress levels of primary caregivers of children with CP. Clinical implications: Rehabilitation services for children with disabilities should include assessments to identify caregivers with high stress levels. Holistic management programmes should also include care for the carers. 

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Stress and the Home Environment in Caregivers of Children with Sickle Cell

Objective: Caregivers of young children with chronic illnesses are at high risk for elevated levels of stress and mental health symptoms. This study examined stress and mental health symptoms as well as the socioeconomic status (SES) and home environments of a cohort of caregivers of infants and toddlers with sickle cell disease (SCD).

Methods: Forty-two caregivers of infants and toddlers (aged 1-34 months) with SCD completed the Brief Symptom Inventory (BSI) and Parent Stress Index (PSI). The Home Observation for Measurement of the Environment (HOME) was used to assess family living environments.

Results: Compared to test norms, caregivers reported high levels of situational/demographic life stress [mean difference (MD) 5.7, p = .003] and child distractibility/hyperactivity (MD 3.62, p = .001) on the PSI. However, no significant differences in psychological symptoms of distress were noted on the BSI. Caregivers scored significantly lower than norms on PSI subdomains of acceptability (MD -1.88, p = .03), competence (MD -3.11, p = .002), depression (MD -3.94, p < .001), and the overall parent domain (MD -12.55, p = .005). Significant correlations were found between PSI scores and the HOME and between SES and the HOME.

Conclusion: Caregivers of infants and toddlers with SCD experience elevated levels of life stress but, in turn, endorse high acceptance of their child and self-competence in parenting. Although life stress may be high in this population, symptoms of psychological distress were not identified. Caregivers reporting elevated life and illness-specific stressors may benefit from environmental supports and interventions. 

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Primary caregivers of in-home oxygen-dependent children: predictors of stress based on characteristics, needs and social support

Aim: To identify the predictors of primary caregivers' stress in caring for in-home oxygen-dependent children by examining the association between their levels of stress, caregiver needs and social support.; Background: Increasing numbers of primary caregivers of oxygen-dependent children experience caregiving stress that warrants investigation.

Design: The study used a cross-sectional design with three psychometric scales - Modified-Parenting Stress Index, Caregiver Needs Scale and Social Support Index.

Methods: The data collected during 2010-2011 were from participants who were responsible for their child's care that included oxygen therapy for ≧6 hours/day; the children's ages ranged from 3 months-16 years. Descriptive statistics and multivariable linear regression were used.

Results: A total of 104 participants (M = 34, F = 70) were recruited, with an average age of 39·7 years. The average age of the oxygen-dependent children was 6·68 years and their daily use of oxygen averaged 11·39 hours. The caregivers' overall levels of stress were scored as high and information needs were scored as the highest. The most available support from family and friends was emotional support. Informational support was mostly received from health professionals, but both instrumental and emotional support were important. Levels of stress and caregiver needs were significantly correlated. Multivariable linear regression analyses identified three risk factors predicting stress, namely, the caregiver's poor health status, the child's male gender and the caregiver's greater financial need.

Conclusion: To support these caregivers, health professionals can maintain their health status and provide instrumental, emotional, informational and financial support. (© 2016 John Wiley & Sons Ltd.)

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Perceptions of Stress, Coping, and Intervention Preferences among Caregivers of Disadvantaged Children with Asthma

Asthma remains the most prevalent chronic illness among children. Despite the substantial body of literature examining children with asthma, few studies have examined parents' perspectives of the condition and experiences of caregiver stress. Parents of children with chronic illnesses experience elevated stress and may have limited opportunities to cope with complex emotions while caring for children with asthma. Drawing from focus groups and interviews with African American and Hispanic parents of children with asthma, this qualitative study was conducted as part of a patient-centered engagement process to inform the refinement of an intervention aimed at reducing stress among parents of children with asthma. All data were transcribed and underwent three waves of inductive analysis. The content analysis indicated that the unpredictable nature of asthma and the caregiving burden associated with managing children's asthma contributed to parents' stress, and external contexts compounded the impact of these stressors. Parents also reported having difficulty identifying how they coped with stress and employed approaches to coping with stress that they applied intermittently but encountered several barriers to enacting known or available coping strategies. Analyses also revealed that parents desired a multimodal stress reduction intervention that emphasized building relationships, allowed for flexibility, and encouraged staff-parent communication. Whereas African American and Hispanic parents' experiences of stress and coping strategies were similar, their preferences differed in regards to incorporating technology into the intervention, the credentials of facilitators, and the salience of language preferences. Understanding the complexities of stressors facing caregivers is important for developing interventions to support parents and children coping with asthma, and in particular when working with families from diverse backgrounds. 

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Respite Care and Stress Among Caregivers of Children With Autism Spectrum Disorder: An Integrative Review

While parenting, in general, can be stressful, mothers of children with autism spectrum disorder (ASD) experience chronic stress comparable to combat soldiers. Research suggests that respite care may potentially reduce stress among caregivers. However, greater understanding of this relationship is needed. The purpose of this integrative review is to examine the relationship between respite care and stress among caregivers of children with ASD.; Sample and Eligibility: A final sample of 11 primary research reports were located using several databases. Articles were included that were: related to the focus of the review, written in English, and published within the last 10 years.; Results and Conclusion: While most studies found that respite care was associated with lower stress, several found that respite care was associated with higher stress. One study found no association. A model is presented that contributes to a new understanding of this relationship. Overall, the results of this integrative review provide some evidence that respite care use may be associated with a decrease in stress among caregivers of children with ASD. However, due to the lack of consistency and quality across the studies, these findings must be interpreted with caution.; Implications: Healthcare providers must recognize the importance of tailoring respite care services to the unique family needs. Additionally, policy changes and innovative ideas are needed to help improve the quality of respite care and help expand access. Finally, additional research is necessary to better understand the relationship between respite care and stress among caregivers of children with ASD. 

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Impact of Caregiving for a Child With Cancer on Parental Health Behaviors, Relationship Quality, and Spiritual Faith: Do Lone Parents Fare Worse?

Caregiving stress has been associated with changes in the psychological and physical health of parents of children with cancer, including both partnered and single parents. While parents who indicate "single" on a demographic checklist are typically designated as single parents, a parent can be legally single and still have considerable support caring for an ill child. Correspondingly, an individual can be married/partnered and feel alone when caring for a child with serious illness. In the current study, we report the results from our exploratory analyses of parent self-reports of behavior changes during their child's treatment. Parents (N = 263) of children diagnosed with cancer were enrolled at 10 cancer centers. Parents reported significant worsening of all their own health behaviors surveyed, including poorer diet and nutrition, decreased physical activity, and less time spent engaged in enjoyable activities 6 to 18 months following their child's diagnosis. More partnered parents found support from friends increased or stayed the same since their child's diagnosis, whereas a higher proportion of lone parents reported relationships with friends getting worse. More lone parents reported that the quality of their relationship with the ill child's siblings had gotten worse since their child's diagnosis. Spiritual faith increased for all parents. References

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Caregiver Experience in Pediatric Dialysis

Background and Objectives: Pediatric dialysis is thought to be burdensome on caregivers given their need to assume dual responsibilities of parental and medical management of their child's chronic illness. In this study, we seek to describe the experience of parental caregivers of children receiving chronic dialysis for end-stage kidney disease.

Methods: We performed semistructured interviews of primary caregivers of children with end-stage kidney disease receiving chronic peritoneal dialysis or hemodialysis for at least 8 weeks from March 2016 to April 2017 at 3 pediatric dialysis centers in the United States. We performed a thematic analysis to inductively derive and identify themes and subthemes related to positive and negative caregiver experiences.

Results: Thirty-five caregivers completed interviews. Four major themes were identified, each with several subthemes: (1) caregiver medicalization (subthemes: diagnosis and initiation, disease management, and the future), (2) emotional adjustment (initial and/or acute phase, acceptance, personal growth, and medical stress and psychological burden), (3) pragmatic adaptation (disruption, adaptation of life goals and/or sense of self, and financial impact), and (4) social adjustment (relationship opportunity, relationship risk, advocacy, family functioning, and intimate relationships). These themes and subthemes reflected a broad range of experiences from positive to severely burdensome. 

Conclusions: Caregivers of patients on dialysis report a broad range of positive and burdensome experiences. These results reveal a need for continued advocacy to support families with a child on dialysis and can be used to develop targeted measures to study and improve caregiver experience in this population. 

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Life After an Autism Spectrum Disorder Diagnosis: A Comparison of Stress and Coping Profiles of African American and Euro-American Caregivers

The purpose of the present study was to understand how caregiver stress and coping behaviors impact African American and Euro-American families differently when caring for a child with autism. This study used discriminate function analysis to contrast the stress and coping profiles of Euro-American caregivers who are more acculturated with the majority culture with African American caregivers who ascribe to more traditional values. A sample of 103 families was recruited (52 Euro-American, 51 African American). African American families reported significantly more stress and utilizing more varied coping strategies than their Euro-American counterparts. Additional differences were found between the high and low acculturated African American groups such that low acculturated African Americans were more likely to engage in religious coping.

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Factors determining parenting stress in mothers of children with atopic dermatitis

Background: Atopic dermatitis (AD) influences a child's emotional and social well-being, as well as his or her physical health. The influence of AD on the daily lives of parents and caregivers has also been documented. This study examined how parenting stress is affected by demographic background, characteristics of children's AD, and their family systems.

Methods: The participants were mothers of children, aged 2-6 years old, who had been diagnosed with AD. The predictive power of a model of parenting stress was examined using multiple regression analysis (stepwise), with parenting stress (PSI-SF) as the dependent variable, and children's demographics, including characteristics of AD; parents' demographics; QoL of families of children with AD (JCMV-CADIS); and family functioning (FAI) as independent variables. We handled missing values using a multiple imputation method.

Results: The pooled coefficients obtained from the multiple regression analysis after multiple imputation indicated that "family cohesion," "family system flexibility," "emotions related to social factors" and "occupation of mother" determined parenting stress. Lower family cohesion and family system flexibility predicted higher parenting stress. The high impact of "emotions related to social factors" on families' QoL predicted higher parenting stress. Full-time work by mothers predicted lower parenting stress.

Conclusions: The current results reveal that "family cohesion," "family system flexibility," "emotions related to social factors" and "full-time work by mothers" predicted parenting stress of mothers who had children with AD. 

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Responsive Parenting Behaviors and Cognitive Function in Children With Sickle Cell Disease

Objective: Children with sickle cell disease (SCD) are at increased risk for cognitive impairment as a result in part from biological characteristics of the disease; however, limited research has explored possible social and contextual factors associated with risk for cognitive problems. The primary aim of the present study was to examine the relation between children's cognitive functioning and responsive parenting, a potentially important contextual factor in children with SCD, accounting for family socioeconomic disadvantage, child disease severity, and caregivers' perceived stress.

Methods: Forty-eight children completed standardized cognitive assessments and caregivers provided self-reports of general and disease-related stress. Parent-child dyads completed a video recorded puzzle-solving task and observed parenting was quantified using two coding systems. Bivariate Pearson correlations were used to assess preliminary hypotheses, and linear multiple regression analyses were used to assess the primary hypothesis.

Results: Results suggested that increased levels of parental stress were related to fewer observations of responsive parenting and provided evidence of an association between children's cognitive function and responsive parenting. Specifically, increased disease-related parent stress and reduced parental use of expansive language were associated with significantly lower cognitive functioning in children with SCD.

Conclusions: Findings suggest that social environmental factors along with disease characteristics are sources of risk for cognitive problems with children with SCD. Further, these findings highlight the need to develop targeted interventions for parents of children with SCD to decrease levels of stress and enhance parenting skills, with the aim improving cognitive functioning in youth. 

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Presurgical Concerns of Primary Family Caregivers of Children With Cerebral Palsy

Background: Primary family caregivers (PFCs) of children with cerebral palsy have many worries and concerns when their children face orthopedic surgery. Levels of PFC stress about the upcoming surgery is related to the child's level of gross motor function as well as the support they receive from medical professionals.

Purpose: The purposes of the present study were to (1) explore the levels of concern about orthopedic surgery; and (2) explore the predictive factors associated with concerns about orthopedic surgery among PFCs of children with cerebral palsy during the preoperative period. 

Methods: A cross-sectional, correlational study was conducted. Primary family caregivers were assessed preoperatively using the Single-event Multilevel Surgery Scale, Social Support Scale, Gross Motor Function Classification System-Expanded and Revised, and background information form. Primary family caregivers were recruited from the outpatient department of orthopedic surgery and pediatric rehabilitation of a medical center in northern Taiwan. Data were analyzed by descriptive analysis, Pearson product-moment correlation, and multiple regression analysis.

Results: A total of 63 eligible subjects were enrolled in this study. Primary family caregivers had moderate levels of concern and mild-to-moderate levels of social support. The higher severity of motor function impairment in children with cerebral palsy, prior caregiving by PFCs for another family member, and PFCs' lower level of social support from healthcare providers were associated with higher levels of PFC concern.

Conclusions: Concerns about orthopedic surgery is an overlooked issue that needs more attention from healthcare providers. This study determined that PFCs who perceived a lack of social support from their healthcare providers and those with children who had limited gross motor function were more concerned and anxious about their children's upcoming orthopedic surgery. Health professionals should provide adequate health education and counseling to help PFCs of children with cerebral palsy in the decision-making process prior to orthopedic surgery.

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Vulnerability and agency across treatment-seeking journeys for acutely ill children: how family members navigate complex healthcare before, during and after hospitalisation in a rural Kenyan setting

Background: Child mortality rates during hospitalisation for acute illness and after discharge are unacceptably high in many under-resourced settings. Childhood vulnerability to recurrent illness, and death, is linked to their families' situations and ability to make choices and act (their agency). We examined vulnerability and agency across treatment-seeking journeys for acutely ill children and considered the implications for policy and practice.

Method: A qualitative sub-study was embedded within the prospective CHAIN Network cohort study, which is investigating mechanisms of inpatient and post-hospital discharge mortality among acutely ill young children across a spectrum of nutritional status. Primary data were collected from household members of 20 purposively selected cohort children over 18 months through formal interviews (total n = 74), complemented by informal discussions and observations. Data were analysed using narrative and thematic approaches.

Results: Treatment-seeking pathways were often long and complex, particularly for children diagnosed as severely malnourished. Family members' stories reveal that children's carers, usually mothers, navigate diverse challenges related to intersecting vulnerabilities at individual, household and facility levels. Specific challenges include the costs of treatment-seeking, confusing and conflicting messaging on appropriate care and nutrition, and poor continuity of care. Strong power inequities were observed between family members and health staff, with many mothers feeling blamed for their child's condition. Caregivers' agency, as demonstrated in decision-making and actions, often drew on the social support of others but was significantly constrained by their situation and broader structural drivers.

Conclusion: To support children's care and recovery, health systems must be more responsive to the needs of families facing multiple and interacting vulnerabilities. Reducing incurred treatment costs, improving interpersonal quality of care, and strengthening continuity of care across facilities is essential. Promising interventions need to be co-designed with community representatives and health providers and carefully tested for unintended negative consequences and potential for sustainable scale-up.

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Walking in the shoes of caregivers of children with obesity: supporting caregivers in paediatric weight management

To incorporate the perspectives and experiences of family caregivers of children with obesity, the KidFit Health and Wellness Clinic, a paediatric weight management programme, embedded feedback opportunities into various stages of programme development. Caregivers were eligible to participate if their children had completed initial 4-week group-based pilot programming or were currently receiving treatment in 10 or 12 week group-based programming. Data were collected through feedback session discussions, audio-recorded, transcribed verbatim and analysed thematically. In total, 6 caregivers participated in the pilot group feedback session and 32 caregivers participated in the structured group feedback sessions. Caregivers reported that healthy lifestyle strategies first communicated by clinic staff to children during group sessions provided expert validation and reinforcement when discussing similar messages at home. Caregivers reported feeling isolated and blamed for causing their children's obesity and appreciated the supportive forum that group-based programming provided for sharing experiences. Since experiences of blame and isolation can burden caregivers of children with obesity, paediatric weight management programmes might consider including peer support opportunities and discussion forums for ongoing social support in addition to education about lifestyle change. 

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Social support moderates the effect of stress on the cortisol awakening response in dementia family caregivers

Background: Dementia caregiving has been associated with a range of adverse effects on the physical health of the caregiver. However, the specific mechanisms underlying the relationship between dementia caregiver stress and ill health remain unclear. Objectives: The aim of this study was to investigate, using available prospective data, the relationship between perceived stress (burden) and pre-clinical indices of ill-health (cortisol awakening response and secretory immunoglobulin A) amongst dementia caregivers. The potential moderating effect of social support on the perceived stress-physiological stress/health relationship was also explored. Methods: Participants (N = 31) were caregivers of community-dwelling older adults living with dementia who were enroled in a psychoeducation support program and provided data (study questionnaire and saliva samples) at two timepoints (T1 and T2), 10 weeks apart. Hierarchical regressions were used to determine if changes in stress and social support predicted change in each of the physiological outcomes. Results: Findings indicate that caregivers with more hours of care at T1, or with greater satisfaction with social support, were more likely to exhibit an adaptive cortisol awakening response at T2. Moreover, social support was found to buffer the effect of caregiver stress and hours of caregiving on the cortisol awakening response. Conclusions: Implications for future interventions targeting caregiver health are discussed. 

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Breaks or breakdown: Carers Week 2021 report

Fewer than one in five (14%) exhausted unpaid carers are confident that the support they receive with caring will continue following the COVID-19 pandemic. After an extraordinarily challenging year providing many more hours of care for loved ones during the pandemic - coping with reduced support from health and care services as well as limited help from family and friends - unpaid carers are seriously worried about the support they will have to help them care in the future. Research released for Carers Week has found that carers lost, on average, 25 hours of support a month they previously had from services or family and friends before the pandemic. 72% of carers have not had any breaks from their caring role at all. Of those who got a break, a third (33%) used the time to complete practical tasks or housework, and a quarter (26%) to attend their own medical appointments. Three quarters (74%) reported being exhausted as a result of caring during the pandemic, and more than a third (35%) said they feel unable to manage their unpaid caring role. 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 provide £1.2 billion funding for unpaid carers’ breaks, so that those providing upwards of 50 hours of care are able to take time off for their own health and wellbeing.

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Supporting Double Duty Caregiving and Good Employment Practices in Health Care Within an Aging Society

Background: Due to the aging society the number of informal caregivers is growing. Most informal caregivers are women working as nurses within a health organization (also labeled as double-duty caregiver) and they have a high risk of developing mental and physical exhaustion. Until now little research attention has been paid to the expectations and needs of double duty caregivers and the role of self-management in managing private-work balance. Objective: The overall aim of this study was to investigate the expectations and needs of double duty caregivers in Netherlands, and to examine the meaning of self-management in managing work-life balance. Method: Different research methods have been applied in this exploratory study. Firstly, a scoping review has been conducted on the topics self-management and sustainable employability of double-duty caregivers using the search engines: CINAHL, MEDLINE, PubMed, and Google Scholar. Furthermore, a qualitative study has been conducted through focus groups with double duty caregivers. Results: Twenty studies that met the inclusion criteria (i.e., nurses with double duty caregiving tasks) could be identified. We found that double duty caregivers have different motivations for being a double duty caregiver based on internal and external expectations. Double duty caregiving causes a lot of mental and physical pressure for the caregiver. To be able to combine both duty's, double duty caregivers need flexibility and understanding from the workplace. Through two focus groups (N = 17) we found that social support from the workplace is not enough to be able to manage the situation. Self-management skills are important to be able to communicate effectively with the workplace and community care organizations about the kind of support needed. Also, health care organizations should offer the same support to double duty caregivers as any other informal caregiver. Discussion: Double-duty caregivers are at high risk of developing symptoms of overload and risk of reduced self-management quality and employability levels across time. Health care organizations and the double duty caregiver often wait too long to act instead of taking more preventive measures. Furthermore, community care organizations should dialog with double duty caregivers about their wishes concerning the division of caring tasks. This finding calls for special attention, with long-term solutions at both macro (health-care level), organizational (meso-level), and employee level (micro level).

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Stress as a challenge in promoting mental health among dementia caregivers

BACKGROUND: Caregiver stress is harmful to the health of both caregivers and people living with Alzheimer's disease or other dementias. The present study was conducted to assess stress and its predictors of people living with Alzheimer's disease or other dementias' caregivers. METHODS: The present descriptive, analytical, cross-sectional study was conducted in December 2017-June 2018 in Isfahan, Iran. Data were collected by interviewing 99 caregivers had at least 6 months of experience caring for a patient diagnosed with Alzheimer's disease, through questionnaires developed by the researcher. A convenience sample (easy access) of caregivers was recruited from calling the home of formally diagnosed with Alzheimer's patient, that have registered in educational hospitals affiliated to Isfahan University of Medical Sciences and psychiatrists' office both paid caregivers (formal) and unpaid caregivers (family). All caregivers provided informed consent. The type and severity of the relationship between the dependent (stress) and independent variable were assessed using Pearson's and Spearman's correlation coefficients, the independent t-test, and the multivariate regression analysis. RESULTS: The caregivers' mean stress score was 25.4 +/- 10.9 (range: 4-54). About 80% of the caregivers were female. Age and stress score was correlated (P = 0.004), the mean stress score was significantly higher in female caregivers (P = 0.04), informal caregivers (P < 0.001), and significantly lower in the caregivers with previous experience of caring for Alzheimer's patients (P = 0.02) or those introduced by service companies (P = 0.005). Variables including the family relationship with the patient (P = 0.01), kind of caregiving (P = 0.03), and previous experience of caring for Alzheimer's patients (P = 0.04) were stronger predictors of the stress score. CONCLUSION: Stress is a challenge in promoting mental health among dementia caregivers. Providing social support with an emphasis on physical, mental, and social health is mandatory, especially for female and family caregivers, to promote stress management, mental health in this group, and enable optimal and purposeful care.

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Self-reported symptoms of depression and anxiety among informal caregivers of persons with dementia: a cross-sectional comparative study between Sweden and Italy

Background Around 50 million people worldwide are diagnosed with dementia and this number is due to triple by 2050. The majority of persons with dementia receive care and support from their family, friends or neighbours, who are generally known as informal caregivers. These might experience symptoms of depression and anxiety as a consequence of caregiving activities. Due to the different welfare system across European countries, this study aimed to investigate factors associated with self-reported depression and anxiety among informal dementia caregivers both in Sweden and Italy, to ultimately improve their health and well-being. Methods This comparative cross-sectional study used baseline data from the Italian UP-TECH (n = 317) and the Swedish TECH@HOME (n = 89) studies. Main outcome variables were the severity of self-reported anxiety and depression symptoms, as measured by the Hospital Anxiety and Depression Scale (HADS). HADS scores were investigated using descriptive and bivariate statistics to compare means and standard deviations. Linear regressions were used to test for associations between potential factors and self-reported symptoms of depression and anxiety. Results Italian informal caregivers reported more severe symptoms of depression and anxiety than Swedish caregivers. In Italy, a higher number of hours of caregiving was associated with anxiety symptoms (beta = - 1.205; p = 0.029), being 40-54 years-old with depression symptoms (beta = - 1.739; p = 0.003), and being female with symptoms of both depression (beta = - 1.793; p < 0.001) and anxiety (beta = 1.474; p = 0.005). In Sweden, a higher number of hours of caregiving and being < 39 years-old were associated with depression symptoms (beta = 0.286; p < 0.000; beta = 3.945; p = 0.014) and a higher number of hours of caregiving, the lack of additional informal caregivers and dementia severity were associated with anxiety symptoms (beta = 0.164; p = 0.010; beta = - 1.133; p = 0.033; beta = - 1.181; p = 0.031). Conclusion Multiple factors are associated with self-reported symptoms of depression and anxiety among informal caregivers in Sweden and Italy. Factors found in this study partly differ between the two countries, suggesting the important role of cultural and social factors affecting the experience of caregiving. A deeper knowledge of these factors may increase the knowledge on potential protective and risk factors, provide information to policymakers and ultimately improve the psychological well-being of informal caregivers to people with dementia across Europe.

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Resilience and stress among Hopi female caregivers

Resilience and stress are important factors in the caregiving experience, but research has yet to examine their association among American Indian (AI) caregivers. This study examines resilience and stress in a group of Hopi female caregivers. Data came from the Hopi Adult Caregiver Survey (2017), which conducted interviews with 44 Hopi women who were providing care without remuneration to an adult family member. Measures included the abbreviated Connor-Davidson Resilience Scale (CD-RISC-10), the Perceived Stress Scale (PSS-10), and questions about caregiver characteristics, care recipient characteristics, social support/ community support, and cultural factors. Stress and resilience were looked at above the median (higher stress or higher resilience) and below the median (lower stress or lower resilience). Caregivers who reported relatively lower resilience were more likely to report that they lived separately from their care recipients and that all Hopis are expected to be caregivers. Caregivers who reported relatively higher stress reported a higher total number of caregiver difficulties, a poorer self-perception of their own health, use of a traditional healer in the past 5 years, and that females are expected to be caregivers. A regression analysis adjusting for age, education, and employment status indicated that higher resilience among the caregivers was significantly associated with lower stress. In light of these findings, programs working with AI caregivers may wish to explore whether supporting the resilience of these caregivers is a means towards limiting their stress.

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Relationships between caregiving stress, mental health and physical health in family caregivers of adult patients with cancer: implications for nursing practice

Aim: This study was conducted to investigate the relationships between caregiving stress, mental health and physical health in family caregivers of adult patients with cancer at a University Teaching Hospital in Jeddah city, Saudi Arabia.; Methods: A cross-sectional correlational study was carried out with a convenience sample of 160 family caregivers of adult patients with cancer. Data were collected using a self-administered questionnaire including the Modified Caregiver Strain Index, the DUKE Health Profile and sociodemographic items. The data were analysed using the Statistical Package for the Social Sciences (SPSS). Descriptive and inferential statistics and correlations were performed.; Results: Participants experienced a certain level of caregiving stress (M = 9.01, SD = 5.645). Many factors were found to be correlated to higher caregiving stress in this study. Caregiving stress showed significant moderate negative correlations with mental and physical health (p < 0.01). Statistically significant differences were found between age, gender, nationality, education, monthly income, and caregiving stress or DUKE Health Profile scores (p < 0.05).; Conclusions: Caregiving stress affects family caregivers' mental and physical health. Such stress can disrupt the caregiving performance of family caregivers. Discovering the causes of caregiving stress among the family caregivers of adult patients with cancer may help to determine the main elements affecting patient care and can assist oncology nurses in providing support and services to caregivers. Educational strategies/intervention programs in the hospitals may be required to reduce caregiving stress levels and improve the health and well-being of family caregivers of adult patients with cancer. 

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Psychosocial consequences of a reduced ability to eat for patients with cancer and their informal caregivers: A qualitative study

Purpose: Patients with cancer often experience a reduced ability to eat. This can have psychosocial consequences for both patients and informal caregivers. Current literature is mainly focused on patients with end stage advanced disease and cancer cachexia. This qualitative study provides new insights in the field of Psycho Oncology by exploring psychosocial consequences of a reduced ability to eat in patients in different stages of the disease and in recovery and remission. Method: Semi-structured interviews (n = 26) were conducted in patients with head and neck, lung cancer or lymphoma. Patients' informal caregivers participated in 12 interviews. All interviews were recorded, transcribed and thematically analysed using Atlas.ti. Results: Four themes emerged related to psychosocial consequences of a reduced ability to eat: struggle with eating, high sense of responsibility, misunderstanding by social environment and social consequences. Emotions mentioned by patients and informal caregivers were: anger, anxiety, disappointment, grief and sadness, guilt, powerlessness and shame. The theme social consequences was related to: less pleasure experienced and the social strategies: adjust, search for alternatives and avoid. Conclusion: Patients with cancer and their informal caregivers experience a wide range of psychosocial consequences of reduced ability to eat during all phases of the disease trajectory and in recovery and remission. It is important to recognise and acknowledge this struggle to optimise future care.

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Psychological Well-Being Among Informal Caregivers in the Canadian Longitudinal Study on Aging: Why the Location of Care Matters

Objectives A caregiving stress perspective suggests that caregiving harms psychological well-being in informal caregivers, whereas a caregiving rewards perspective suggests that provision of care benefits psychological well-being. This research examines whether both perspectives apply to caregiving experiences, but differently by the primary location of caregiving (i.e. in-home, other residence, and institution), as well as by gender. Methods We analyzed depression and life satisfaction in the nationally representative Canadian Longitudinal Study on Aging (N = 48,648), first comparing noncaregivers (N = 27,699) to a combined caregiver group (N = 20,949) and then stratifying caregivers by the primary location of care. Results When considered as a single group, caregivers suffered relative to noncaregivers in terms of life satisfaction and depression. When stratified by the location of care, only in-home caregivers reported both greater depression and lower life satisfaction. Nonresidential caregivers did not differ significantly in levels of depression from noncaregivers and reported higher life satisfaction. Institutional caregivers reported greater depression than noncaregivers, but did not differ significantly in life satisfaction. These patterns were stronger among women than men. Discussion Both the caregiving stress and caregiving rewards perspectives are applicable to the caregiving experience, with the stress perspective more applicable to in-home caregivers and the rewards perspective more relevant to nonresidential caregivers. Recommendations include targeted practice focused on the location of care as well as the gender of the caregiver. Given that nonresidential caregivers actually benefit from providing care, interventions need to focus on identifying and bolstering positive aspects of the caregiving experience.

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Protocol for a systematic review on the experience of informal caregivers for people with a moderate to advanced dementia within a domestic home setting

Background: The knowledge about the experience of informal caregivers who provide care to people with moderate to advanced dementia in a domestic home setting is limited. A consequence of long hours of caregiving in addition to dealing with normal challenges of daily living is their experience of a poor quality of life. Some of their experiences may be described in terms of a feeling of powerlessness to make changes during care provision. This feeling may also suggest an experience of moral distress. The aim of this systematic review is to synthesise qualitative evidence relating to these experiences. Methods: This review adopts a narrative synthesis approach. A search will be conducted for studies written in the English language in the bibliographic databases MEDLINE Complete, CINAHL, EMBASE, PsycINFO, Web of Science and Academic Search Complete covering periods from 1984 to present. Included studies will be qualitative or mixed-methods designs. The search terms will be related to dementia and caregivers, and the process will be focused on dementia at the moderate to the advanced stages within the domestic home setting. Reference lists of included papers will also be searched for additional relevant citations. Search terms and strategies will be checked by two independent reviewers. The identification of abstracts and full texts of studies will be done by the author, while the quality and the risk of bias will also be checked by the two independent reviewers. Discussion: Psychological distress is cited as an experience reported within informal caregiving. For the caregiver, it is associated with a negative impact on general health. To date, no synthesis exists on the specific experience of informal caregiving for people with moderate to advanced dementia within the domestic home setting. This review considers that variation of accounts contributes to how the informal caregivers' general experience is explored in future research. This may enable gaps in current knowledge to be highlighted within the wider context of caregiving in the domestic home setting. Systematic review registration This review is registered with PROSPERO.

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Palliative medicine family conferences and caregiver psychological distress during prolonged mechanical ventilation

Objectives Little is known about the experience of family caregivers of patients who require prolonged mechanical ventilation (PMV). We examined the perspectives of caregivers of patients who died after PMV to explore the role of palliative care and the quality of dying and death (QODD) in patients and understand the psychological symptoms of these caregivers. Methods A longitudinal study was performed in five hospitals in Taipei, Taiwan. Routine palliative care family conferences and optional consultation with a palliative care specialist were provided, and family caregivers were asked to complete surveys. Results In total, 136 family caregivers of 136 patients receiving PMV were recruited and underwent face-to-face baseline interviews in 2016-2017. By 2018, 61 (45%) of 136 patients had died. We successfully interviewed 30 caregivers of patients' death to collect information on the QODD of patients and administer the Impact of Event Scale (IES), Hospital Anxiety and Depression Scale (HADS) and Center for Epidemiologic Studies Depression (CES-D) scale to caregivers. We observed that more frequent palliative care family conferences were associated with poorer QODD in patients (coefficients: -44.04% and 95% CIs -75.65 to -12.44), and more psychological symptoms among caregivers (coefficient: 9.77% and 95% CI 1.63 to 17.90 on CES-D and coefficient: 7.67% and 95% CI 0.78 to 14.55 on HADS). A higher caregiver burden at baseline correlated with lower psychological symptoms (coefficient: -0.35% and 95% CI -0.58 to -0.11 on IES and coefficient: -0.22% and 95% CI -0.40 to -0.05 on CES-D) among caregivers following the patients' death. Caregivers' who accepted the concept of palliative care had fewer psychological symptoms after patients' death (coefficient: -3.29% and 95% CI -6.32 to -0.25 on IES and coefficient: -3.22% and 95% CI -5.24 to -1.20 on CES-D). Conclusions Palliative care conferences were more common among family members with increased distress. Higher caregiver burden and caregiver acceptance of palliative care at baseline both predicted lower levels of caregiver distress after death.

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Living with dementia: increased level of caregiver stress in times of COVID-19

COVID-19 pandemic in Argentina has affected the care of older adults with dementia deeply. Our objective was to study how the obligatory social isolation affected stress caregiver and burden of care of family members of subjects living with dementia in the community after the initial 4 weeks of quarantine in our setting. We did a questionnaire survey among 80 family caregivers of persons with Alzheimer's disease (AD) or related dementia collected on April 2020. We designed a visual analog scale to test the level of the burden of care. Characteristics of people with dementia and their caregivers were analyzed with descriptive (mean, standard deviation, frequency and percent) and inferential statistics (chi-square test). The sample included older adults (mean age: 80.51 +/- 7.65) with different stages of dementia. Family was the primary provider of care in 65%. Overall, COVID-19 confinement increased stress caregiver independently of the dementia stage, but those caring for severe cases had more stress compared to milder forms of the disease. Other findings were that half of the subjects with dementia experienced increased anxiety and that most family members discontinued all sort of cognitive and physical therapies. Family members' main concerns were for severe dementia cases, fear of absence of the paid caregiver during the epidemic, and for mild cases fear of spreading the disease while assisting patients with instrumental activities. A partnership between departments of public health, care workers and families must be planned to guarantee continuity of care during these unique COVID-19 times.

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Families' Experiences of End-of-Life Care at Home for Iranian Older Adults: A Qualitative Study

Aim: While the care of dying elderly patients at home is very complex and ambiguous, it has not been studied in Iran so far. Hence, this study aimed to explore the experience of a representative sample of the Iranian family caregivers from the end-of-life (EOL) care for their elderly relatives. Methods: The present study was conducted using a qualitative content analysis method. Twelve family caregivers caring for the chronically ill dying elderly were selected using purposeful sampling. The purposive sampling method was applied with an extreme variation in sampling, and data gathering was pursued until data saturation was achieved. Semi-structured interviews were utilized for data collection. Interviews were recorded and instantly transcribed verbatim. Inductive content analysis was used to analyze the data. Results: Four core themes and 13 subthemes emerged from the experiences of family's caregiver as fallow: (1) Committed to care: This is related to encounter with the end of stage disease of the relative, accepting the care role and priority of care, (2) challenges of Care: Caregivers, despite their efforts, provided ineffective care, so they sought to empower themselves and at the same time provide compassionate care, (3) the crisis of care including the complexity of care, fear, and wandering, helplessness, devastating tension, and vacuum of supporting, and (4) conditions after death that family members involved with a sense of loss and Tension control. Conclusion: When families had to take care of their elderly patients at home, although their wish to give the best care, they are completely powerless to provide care, and in an atmosphere of the vacuum of supporting, they encounter severe challenges and crisis. It is vital that palliative care centers in the society are arranged to care for EOL elderly with comprehensive insurance services.

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Experiences of caregiving and quality of healthcare among caregivers of patients with complex chronic processes: A qualitative study

Aim To explore the perceptions of main caregivers regarding caring for chronic complex patients in two different regions of Spain. Background Spain is a country with an ageing population and a high number of people with chronic diseases. It is well known that the role of the caregiver is important to ensure quality of life and appropriate care. Methods Qualitative design using focus groups. Five focus groups, from two different regions, were conducted with 22 caregivers of people with chronic complex diseases to explore their personal experience, examine the quality of care received by the patient and their family and to develop strategies for the improvement of the quality of health care. The focus groups were audio and video recorded. The transcriptions of the focus group sessions were exported to qualitative software analysis MAXQDA 2018.2. The qualitative content analysis was based on different analytical cycles. Results In general terms, caregivers would refer to accepting the care of their family members, but they highlight many negative aspects such as tiredness, lack of help and overload of care. They indicated general satisfaction with the health system but indicated that help was insufficient and that strategies to better address the situations of the complex chronic patient should be improved. The main categories observed were: Conclusions. Complex chronic illnesses are increasingly common at present, generating important consequences on the lives of patients and that of their caregivers. The design of any health strategy for facing the dilemma of chronic illnesses, must necessarily include the vision of the caregivers. • 95% of patients with chronic illnesses live in their home and depend on a caregiver. • Being a caregiver implies a high workload which is assumed in the family context. • Caregivers mostly highlighted the negative impact of caregiving on their physical, mental and emotional health • Health system care for caregivers and chronic patients is still insufficient to meet their needs.

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Digital Technology, Health and Well-Being and the Covid-19 Pandemic: It's Time to Call Forward Informal Carers from the Back of the Queue

Objective: To describe the current challenges of family caregivers during and beyond the COVID-19 pandemic, the need for future digital innovations including involvement from professional nursing roles.; Data Sources: Review of recent literature from PubMed and relevant health and care reports.; Conclusion: The COVID-19 pandemic has caused monumental disruption to health care delivery and care. Caregivers face unprecedented levels of uncertainty: both for the people they care for and for their own health and well-being. Given that many carers face poor health and well-being, there is a significant risk that health inequalities will be increased by this pandemic, particularly for high-risk groups. Innovations including those supported and delivered by digital health could make a significant difference but careful planning and implementation is a necessity for widespread implementation.; Implications for Nursing Practice: Carers need to be championed in the years ahead to ensure they do not become left at the "back of the queue" for health and well-being equity. This situation has been exacerbated by the COVID-19 pandemic. Disruptive change to health and social care is now required where digital health solutions hold considerable promise, yet to be fully realized. 

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Comfort Always: The Importance of Providing Psychological Support to Neurology Staff, Patients, and Families During COVID-19

Background Although the impact of COVID-19 disruption on healthcare staff is increasingly understood, there has been no discussion of how it affects neurological patients and their families. This study sought to understand the impact of COVID-19 on staff, patients and families. Methods The Department of Neuropsychology at the National Hospital for Neurology and Neurosurgery established three new support services for staff, patients and families. Semi-structured interviews elicited concerns and if these were affected by COVID-19. Staff members were asked to complete the General Health Questionnaire-12. Results Few staff members presented for support, but nearly all indicated significant distress, reflecting increased anxiety and reduced social support. Patients described exacerbated emotional, cognitive and physical concerns, and greater vulnerability to isolation and economic hardship. Families and carers reported increased distress arising from hospital lockdown. Conclusion COVID-19 disruption affects staff, patients and families. Patients and families described additional challenges, which emphasize the importance of providing psychological support during these extraordinary times.

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Challenges of Providing Home Care for a Family Member with Serious Chronic Mental Illness: A Qualitative Enquiry

The South African Mental Health Act of 2002 advocates the de-institutionalization of treatment of patients with mental disorders, so that the mental health care users or patients are treated in their communities. Although this approach is often used to discharge patients from hospital, no feasibility assessments are conducted to ascertain adequate care for these patients. The objective of the study was to explore the experiences of family members who provide home care for patients with serious mental disorders. A qualitative explorative design was used to interview 20 primary caregivers whose family members were readmitted to a public psychiatric hospital in Pretoria. Data were analysed using NVivo version 11. The findings are that caring for patients with serious mental illness at home is difficult, sometimes unbearable, because the families have to deal with violence perpetrated by the patients, safety concerns, financial difficulties and emotional turmoil, and wish that the patients would be kept in institutions. The absence of required skills and resources to care for the mentally ill at home exposes the patients and their families to emotional, financial and social difficulties, and results in unfavourable outcomes for both the patients and their families.

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Assessing vigilance in caregivers after traumatic brain injury: TBI-CareQOL Caregiver Vigilance

Objective: Caregivers of individuals with traumatic brain injury (TBI) frequently experience anxiety related to the caregiver role. Often this is due to a caregiver's perceived need to avoid people and situations that might upset or "trigger" the care recipient. There are currently no self-report measures that capture these feelings; thus, this article describes the development and preliminary validation efforts for the TBI-Caregiver Quality of Life (CareQOL) Caregiver Vigilance item bank. Design: A sample of 532 caregivers of civilians (n = 218) or service members/veterans (SMVs; n = 314) with TBI completed 32 caregiver vigilance items, other measures of health-related quality of life (RAND-12, Patient-Reported Outcomes Measurement Information System [PROMIS] Depression, PROMIS Social Isolation, Caregiver Appraisal Scale), and the Mayo-Portland Adaptability Inventory-4. Results: The final item bank contains 18 items, as supported by exploratory and confirmatory factor analysis, item response theory graded response modeling (GRM), and differential item functioning investigations. Expert review and GRM calibration data informed the selection of a 6-item short form and programming of a computer adaptive test. Internal consistency reliability for the different administration formats were excellent (reliability coefficients = .90). Three-week test-retest stability was supported (i.e., r = .78). Correlations between vigilance and other self-report measures supported convergent and discriminant validity (0.01 = r = .69). Known-groups validity was also supported. Conclusions: The new TBI-CareQOL Caregiver Vigilance computer adaptive test and corresponding 6-item short form were developed using established rigorous measurement development standards, providing the first self-report measure to evaluate caregiver vigilance. This development work indicates that this measure exhibits strong psychometric properties.

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Who Cares for Carers? Perspectives on Covid-19 Pressures and Lack of Support

Embracing CarersTM created the Carer Well-Being Index to determine the current and residual impacts of COVID-19 on unpaid carers, including its impact on their economic, physical and psychological well-being.

While carers weren’t alone in experiencing 2020 as a highly emotional and unstable period, they faced unique pressures, demands and time commitments often overlooked by society. They must now navigate fast-changing care delivery models, learn new telehealth and technology, provide emotional support despite their own emotional needs, and handle increased responsibilities at home—all at once.

Amid these rising responsibilities, many carers sacrifice their own health and well-being for the sake of people they love. They deal with emotional isolation. Financial strife hits hard as unemployment spikes and salaries are imperiled. Many lack the time to care for their own physical and emotional health. There are even more nuanced challenges when looking at women carers, younger, middle-aged and older carers, who encounter inequities.

In taking a hard look at how the pandemic has affected the globe, carers have faced unprecedented challenges – they are undercounted, unheard and struggling.

Now more than ever, governments, public entities, the private sector and all citizens have roles to play in addressing that problem. Carers should not have to face these hardships and inequities alone. They’re sacrificing for us, one by one. As a society, we can help them, together.

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The impact of stress on depression, ill health and coping in family members caring for patients with acquired brain injury

Background: This study investigated the impact of stress on levels of depression and ill health as an indication of psychological coping. The research sample consisted of 80 family caregivers (who are members of Headway Gauteng, located in Johannesburg, South Africa) of patients with acquired brain injury.; Methods: A mixed method design of data collection was utilised that included self-report procedures (structured questionnaires and interviews) and post-interview content analyses. In addition, two individually administered measures that have been widely used in clinical practice and research were administered (a stress symptom checklist and the Beck Depression Inventory).; Results: The majority of the research participants experienced high levels of stress along with an inordinate physical and mental health impact indicating that they were not able to cope up with the ongoing chronic stress of caregiving.; Conclusion: Findings provide compelling evidence of the value of psychological screening for elevated stress and poor coping in family members caring for a patient with acquired brain injury in a resource-limited healthcare society. We recommend a collaborative effort between medical and psychological health practitioners in order to ensure a holistic and inclusive approach towards treatment procedures and interventions to improve coping skills in family members caring for a patient with acquired brain injury.

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Factors associated with strain among informal care providers of patients with traumatic brain injury in Malaysia

Purpose: This study aims to investigate the level of strain and various influencing factors among informal care providers of traumatic brain injury (TBI) patients. Methods: A cross-sectional study was conducted in a single center in Malaysia via recruiting care providers of patients with TBI. The modified caregiver strain index (MCSI) questionnaires were utilized to ascertain the level of strain. The demographic data of informal care providers were also obtained. Independent sample t-test, analysis of variance (ANOVA), and a linear regression model were processed for data analysis. Results: A total of 140 informal care providers were included in the study. More than half of informal care providers claimed to have strain (54.3%). Factors associated with increased strain include receiving tertiary education, being of Chinese background, and employed experience higher strain level. Informal care providers with characteristics such as being single, retired and provided care for 5 years experienced a lower level of strain. Conclusion: Guidance on integrating the TBI knowledge into practice, assessing the care provider's level of strain regularly and providing supportive measures may aid in supporting informal care providers at risk. 

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A Visual-Analogue Screening Tool for Assessing Mood and Quality of Daily Life Complications in Family Members of People Living With Cancer: Portuguese Version of the Emotion Thermometers: Burden Version

Cancer is a disease that impacts not only the patient but also affects the entire family. Family members experience high levels of distress. Therefore, screening for cancer-specific distress among family members of people with cancer is important but relatively unexplored. This cross-sectional study aims to analyze the psychometric properties of a screening tool for family members of people with cancer. We examined the usefulness of the emotional thermometers burden version (ET-BV) in detecting caregiver emotional distress. The ET-BV is a simple multidomain visual analogue scale distributed in two major domains: "emotional upset" and "impact." A total of 364 cancer patients' family members completed the ET-BV and Brief Symptom Inventory. Analyses were aimed to examine the diagnostic accuracy (receiver operating characteristic) of the ET-BV. A fair to good diagnostic accuracy was achieved for ET-BV. For emotional upset thermometers, a cutoff of ≥5 was determined and for impact thermometers, a cutoff of ≥4 was established. ET-BV seems to be a useful, quick, and simple tool for distress screening in family members of people with cancer. A revision of a specific thermometer is discussed in order to increase ET screening performance and clinical utility. 

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Stress and well‐being of unpaid carers supporting claimants through disability benefit assessments

This study assessed the subjective well‐being and perceived stress of unpaid carers of disability benefit claimants. A total of 129 carers from the UK were surveyed between July and September 2017, using a cross‐sectional design. Carers, who provided unpaid support to sick or disabled friends, family or neighbours in a non‐professional capacity, reported here as unpaid carers, were asked to complete a web‐based questionnaire comprising of the Perceived Stress–10‐item Scale (PSS‐10), the Personal Wellbeing Index–Adult (PWI‐A), sociodemographic characteristics, the time they spent caring per day and the number of Personal Independence Payment and Work Capability Assessment interviews prepared for and attended by the person they cared for. Hierarchical regression analyses were performed to assess the effects of the number of benefit assessments on stress and well‐being scores, controlling for carers' sociodemographic characteristics and the time they spent caring. Analyses revealed that the number of times that claimants were exposed to benefit assessments significantly and negatively predicted unpaid carers' well‐being and was positively related to their stress levels. After controlling for sociodemographic characteristics and hours supporting per day, benefit assessments predicted 8.1% of perceived stress and 4.3% of well‐being variance. Being a female unpaid carer of a disability benefit claimant negatively predicted 7.5% of well‐being variance. The results offered unique evidence of the negative psychological effects of disability benefit assessments upon unpaid carers, while adding to the evidence of female carers facing increased risks of psychological distress.

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Role of the Infusion Nurse: Caring for the Family/Lay Caregiver of Older Adults

Approximately 43 500 000 family caregivers provide unpaid care to an adult or child. Most caregivers provide care to older adults, most often parents. Caregivers are often ill-prepared to assist their loved ones, creating or increasing caregiving burden and/or risk of compassion fatigue, potentially leading to critical "caregiving tipping points." Identifying families who are experiencing increased burden or risk of compassion fatigue is a skill that nurses, including infusion nurses, who have unique entree into the caregiving situation, should develop. The purpose of this article is to describe "impending" tipping points before they occur and to offer solutions for how nurses can help caregiving families identify them and access additional supportive services.

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The Relationship of Caregiving to Work Conflict and Supervisor Disclosure With Emotional, Physical, and Financial Strain in Employed Family Caregivers

Objective: To determine whether employed family caregiver reports of caregiving to work conflict (CWC) are associated with emotional, physical, and financial strain, and whether organizational factors, including supervisor disclosure and caregiver-friendly workplace policies, attenuate these effects. Method: We examined 369 full-time employed caregivers of adults aged 50 years and above from the 2015 AARP and National Alliance for Caregiving population-based study, Caregiving in the United States, using ordinary least squares hierarchical regression and moderation analyses. Results: Regression analyses showed that caregiver reports of more CWC, in addition to disclosure of caregiving, were associated with greater emotional, physical, and financial strain after controlling for demographics and caregiving stressors, and workplace policies did not attenuate strain. Neither disclosure nor policies moderated the impact of CWC on caregiver strain. Discussion: Results suggest the importance of workplace strain in the caregiving stress process and suggest that disclosing caregiving responsibilities to supervisors should be closely examined.

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Relationship between Distress Related to Caregiver Burden and Physical Activity in Informal Caregivers of Patients with COPD

Chronic obstructive pulmonary disease (COPD) can lead to increased dependence on the informal caregiver and, consequently, to distress associated with caregiving burden. In the general population, higher levels of physical activity (PA) are related to lower distress levels; however, this relationship has been scarcely studied in COPD. This study aimed to explore the relationship between distress and PA in informal caregivers of patients with COPD, and the influence of caregivers' (age, sex) and patients' (age, sex, lung function) characteristics and caregiving duration on this relationship. A cross-sectional study was conducted with 50 caregivers (62.7 ± 9.8 years, 88% female; 78% caring for a spouse/partner; 38% caring >40 h/week; patients' FEV1=45.2 ± 21.3% predicted). Data collection comprised questions related to the caregiving context, distress related to caregiving burden assessed with the Informal Caregiver Burden Assessment Questionnaire (QASCI; total score, 7 subscales), and self-reported PA with the Habitual Physical Activity Questionnaire (HPAQ). Spearman's correlation coefficient and linear regressions were used. Significant, negative and moderate correlations were found between the QASCI (28.5 ± 19.8) and the HPAQ (5.2 ± 1.3) (ρ=-0.46; p = 0.01); and between the HPAQ and some QASCI subscales (emotional burden ρ=-0.47; implications for personal life ρ=-0.52; financial burden ρ=-0.44; perception of efficacy and control mechanisms ρ=-0.42; p < 0.01). Two linear regression models were tested to predict QASCI total score including as predictors: 1) HPAQ alone (p = 0.001; r2=0.23); 2) HPAQ and caregiving h/week (p < 0.001; r2=0.34). Higher self-reported PA levels are related to decreased levels of distress associated with caregiver burden in COPD caregivers. Duration of caregiving may negatively influence this relationship.

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Quality of life and emotional distress among caregivers of patients newly diagnosed with cancer: Understanding trajectories across the first year post-diagnosis

The cancer caregiving experience is multifaceted and dynamic across different phases of the cancer care continuum. This longitudinal study examined the trajectories of CQOL and caregiver emotional distress across the first year post-diagnosis. Participants were 111 caregivers of newly diagnosed patients who completed baseline, 6-month, and 12-month follow-ups. Trajectories of CQOL, CQOL domains, caregiver depression, anxiety, and stress, were estimated using linear and quadratic mixed models. The trajectory of overall CQOL followed an inverse U-shape trend, while caregiver depression, anxiety, and stress remained stable. For CQOL domains, physical/practical needs followed a gradual trend of improvement, while social support followed an inverse U-shape trend; caregiver burden, emotional reactivity, and responsibility/duty remained stable. The multidimensional needs of caregivers of newly diagnosed patients appeared to follow different trajectories across the first year post-diagnosis. While most CQOL domains remained stable, caregivers may experience adjustment difficulties in terms of relational concerns and social support. 

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Qualitative Assessment of Unmet Information Management Needs of Informal Cancer Caregivers: Four Themes to Inform Oncology Practice

PURPOSE: Family and friends often provide informal care for patients with cancer, coordinating care and supporting patients at home. Stress, depression, and burnout are increasingly recognized among these informal caregivers. Although past research has described a range of needs, including the need for information, details about unmet informational needs for caregivers have not been fully described. We sought to assess unmet information management needs for informal caregivers in the digital era. METHODS: This was a qualitative research study with semistructured interviews and focus groups of nonprofessional caregivers for patients with cancer, facilitated using a discussion guide. Eligible caregivers supported patients in the community who were in treatment (chemotherapy or radiotherapy) or completed treatment within 3 years. Participants were recruited using informational flyers at an academic cancer center and in the local community of metropolitan Milwaukee, Wisconsin. Sessions were transcribed verbatim and analyzed inductively to identify themes. RESULTS: Thirteen caregivers participated, the majority between 41 and 60 years of age: seven of 13, 53.8%, were predominantly women; 10 of 13 (76.9%) were educated, 10 of 13 (76.9%) had graduated from college; and of modest means, six of 13 (46.2%) had household incomes < $35,000. Four themes emerged: (1) the information overload paradox, where caregivers felt overloaded by information yet had unmet informational needs; (2) navigating volatility as a caregiver, with changing or unknown expectations; (3) caregivers as information brokers, which placed new burdens on caregivers to seek, share, and protect information; and (4) care for the caregiver, including unmet information needs related to self-care. CONCLUSION: This study identified several informational challenges affecting caregivers. Caregivers have dynamic and evolving informational needs, and strategies that support caregivers through just-in-time information availability or dedicated caregiver check-ins may provide relief within the stress of caregiving.

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Psychosocial Distress in Women With Breast Cancer and Their Partners and Its Impact on Supportive Care Needs in Partners

Objectives: While both patients and informal caregivers report high levels of cancer-related distress, supportive care needs of relatives are often not taken into account and little is known about mutual perception of distress within couples. Therefore, we aimed to investigate distress in female patients with breast cancer and their male partners as well as supportive care needs in partners.; Methods: In this cross-sectional study, we recruited women with breast cancer during primary cancer care and their male partners, obtained information on mental distress and supportive care needs through visual analog scales for four mood domains and the Short Form of Supportive Care Needs Survey (SCNS-SF34).; Results: Among 250 eligible patients with breast cancer, 102 patients (40.8%) and their male partners participated. Partners reported higher levels of distress ( p = 0.02), whereas patients (self-assessment) indicated stronger needs for help ( p < 0.001). Men with higher levels of distress were younger ( p < 0.001), and reported a shorter relationship duration ( p = 0.001) compared to partners with lower distress. Partners overestimated distress, anxiety, depression, and need for help in the patient. Patients overestimated partners need for help. The majority of partners (78%) reported at least one unmet need, most frequently related to the health system and information domain.; Conclusion: A systematic distress and needs assessment for women with breast cancer and their male partners is mandatory. The provision of optimal supportive care depends on protocols that include not only psychosocial care for patients but also procedures for managing distress and needs for partners including individual and couple-based interventions. 

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Predictors of criticism and emotional over-involvement in relatives of early psychosis patients

Mechanisms underlying the manifestation of relatives' expressed emotion (EE) in the early stages of psychosis are still not properly understood. The present study aimed to examine whether relatives' psychological distress and subjective appraisals of the illness predicted EE dimensions over-and-above patients' poor clinical and functional status. Baseline patient-related variables and relatives attributes comprising criticism, emotional over-involvement (EOI), psychological distress, and illness attributions were assessed in 91 early psychosis patients and their respective relatives. Relatives were reassessed regarding EE dimensions at a 6-month follow-up. Relatives' psychological distress and illness attributions predicted criticism and EOI over-and-above patients' illness characteristics at both time points. Relatives' increased levels of anxiety, attributions of blame toward the patients, an emotional negative representation about the disorder, and decreased levels of self-blame attributions predicted EE-criticism at baseline. Relatives' anxiety and negative emotional representation of the disorder were the only significant predictors of EE-criticism at follow-up, whereas anxiety, attributions of control by the relative and an emotional negative representation about the disorder predicted EE-EOI both at baseline and follow-up assessments. Understanding the components that comprise and maintain EE attitudes should guide early psychosis caregivers in family interventions, enhancing proper management of psychological distress and reduction of negative appraisals about the illness. The prevention of high-EE attitudes over time in a sensitive period such as early psychosis might be critical in shaping the health of caregivers and the outcome of the affected relatives.

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Overburdened and Underprepared: Medical/Nursing Task Performance Among Informal Caregivers in the United States

Informal caregivers are increasingly performing medical/nursing tasks in the home for adult care recipients, often without adequate support. In the current study, using data from the Caregiving in the U.S. 2015 survey (N = 1,248), we examined associations between performing medical/nursing tasks and caregiver well-being (e.g., physical strain, emotional stress, burden of care). Overall, 58% of caregivers performed medical/nursing tasks. Compared to those who did not, those performing tasks had higher risk of emotional stress, physical strain, and high burden of care. Among task performers, difficulty performing tasks was associated with higher risk of all outcomes; having no choice in caregiving was independently associated with higher risk of emotional stress and physical strain. Caregivers performing medical/nursing tasks, particularly those who find tasks difficult, are at risk for adverse outcomes. New clinical approaches are needed to ensure meaningful conversations about caregivers' willingness, availability, and ability to perform medical/nursing tasks and to provide support for this part of the caregiving role. 

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Neighbourhood relationships moderate the positive association between family caregiver burden and psychological distress in Japanese adults: a cross-sectional study

Objectives: Family caregiver burden is associated with higher psychological distress. However, little is known about the impact of neighbourhood relationships on caregivers' psychological distress. We examined whether neighbourhood relationships of caregivers moderate the association between family caregiver burden and psychological distress. Study design: This was a cross-sectional study. Methods: We recruited 5321 Japanese adults who participated in the Japan Multi-Institutional Collaborative Cohort Study in the Okazaki area between 2013 and 2017. Participants completed self-reported questionnaires to measure psychological distress (Kessler 6: K6), subjective caregiver burden, and neighbourhood relationships. We performed a multivariable linear regression analysis in which caregiver burden was designated as an independent variable and the K6 score as a dependent variable, adjusting for demographics. The interaction term between caregiver burden and neighbourhood relationships was also included in the analysis. Results: Data from a total of 5069 participants were included (mean age [standard deviation]: 63.1 years [10.3 years]; 2226 [43.9%] female). Caregiver burden was significantly and positively associated with psychological distress (compared with no burden, mild burden: beta = 0.24, P = 0.197; severe burden: beta = 0.60, P < 0.01; P for trend < 0.01). There was a significant negative interaction effect of caregiver burden x neighbourhood relationship on psychological distress (severe burden x good neighbourhood relationship: beta = -3.29, P < 0.01). Conclusions: A higher caregiver burden was associated with higher psychological distress, and neighbourhood relationships moderated this association. Our findings suggest that good neighbourhood relationships can buffer caregiving-associated psychological distress. 

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Needs, Aggravation, and Degree of Burnout in Informal Caregivers of Patients with Chronic Cardiovascular Disease

This study aimed to answer three main questions with respect to home caregivers for people with cardiovascular disease: (1) Are the needs of home caregivers being met (and at what level)?; (2) what is the level of emotional exhaustion, depersonalization, and personal accomplishment of home caregivers?; (3) what sociodemographic variables of home caregivers are related to unmet needs and level of emotional exhaustion, depersonalization, and personal accomplishment? The study used the Camberwell Modified Needs Assessment questionnaire and the Maslach Burnout Inventory questionnaire. This study reports on 161 informal home caregivers of patients with cardiovascular disease. We found that younger caregivers were less likely to report unmet needs ( p = 0.011), and showed lower rates of burnout on depersonalization and emotional exhaustion. In addition, caregivers who worked more often reported higher levels of met needs ( p = 0.022), and showed lower rates of burnout on depersonalization ( p = 0.005) and emotional exhaustion ( p = 0.018). Subjects residing in urban areas were more likely to report unmet needs ( p = 0.007), and showed higher rates of burnout on emotional exhaustion ( p = 0.006). Older caregivers who are unemployed and reside in cities should be offered programs to determine their unmet needs and to receive support.

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ILFA Stakeholder Survey: Caregivers

Between April 16th and May 5th 2020, the Irish Lung Fibrosis Association commissioned a survey of its stakeholders to gain a deeper understanding of how their daily and healthcare needs were being met during the Covid-19 pandemic. Caregivers were quite concerned about poor levels of awareness and lack of recognition of Idiopathic Pulmonary Fibrosis (IPF) as a serious condition. Several were experiencing stress and they found the support from ILFA very helpful. They also felt it would be useful for newly diagnosed patients and their caregivers to be pointed to ILFA immediately upon diagnosis.

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The Last Day Narratives: An Exploration of the End of Life for Patients with Cancer from a Caregivers' Perspective

Background: Surviving family caregivers describe the end-of-life experience as "very distressing" and half of those surveyed indicate inadequate emotional support; however, little is known about the causes of distress on the last day of life. Objective: The purpose of this study was to explore the experience of the last day of life from the perspective of the surviving caregiver. Design: The study used a narrative inquiry approach. Setting/Subject: Surviving caregivers of deceased adult cancer patients at a single institution were invited to participate. Measurements: After reviewing, coding, and categorizing the narratives individually, they were collectively considered and thematically analyzed across all cases to provide a summative analysis. Results: Six themes captured the overall experiences: (1) relationships and communication with health care providers impact overall experience, (2) being able to prepare for death was a source of comfort, (3) being a caregiver impacts quality of life and identity, (4) spiritual visitations as a welcome experience, (5) navigating the dying days and early grief period wrought with guilt and closure, and (6) loss of community contributes to distress and distracts from healing. Conclusions: In this study, distress was most often linked to communication failures. Caregivers also experienced distress and guilt related to the loss of their caregiver role. Findings also support a need for increased preparation for caregivers. Finally, the study showed the frequency of visitations/spiritual experiences during grieving. 

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"In the flesh": Narratives of family caregivers at risk of Early-onset Familial Alzheimer's Disease

In the growing body of literature dealing with the consequences of family caregiving amongst people with dementia, there are few studies examining the impact of Early-onset Familial Alzheimer's Disease on caregivers. This study exposes the subjective experience of a group of family caregivers who themselves possess a genetic susceptibility to develop this form of dementia. We interviewed and analyzed the accounts of 27 caregivers belonging to family lineages carrying the E280A mutation for Early-onset Alzheimer's Disease. We utilized a phenomenological method to analyze these accounts, initially tracking seven theoretical categories (Anxiety, Depression, Burden, Resilience, Self-efficacy, Social Support, and Coping Strategies) and then subsequently two additional categories which emerged (Conceptions about the Disease and Other Vital Experiences Interfering with Caregiving). The results show that caring for a loved one while simultaneously running the risk of developing the same form of Alzheimer's Disease permeates the caregivers' experience both in a negative and a positive way. The continuous exposition to emotional stress in these caregivers should be seriously considered as they may be at risk of accelerating the onset of symptoms of Alzheimer's Disease, while simultaneously, early psychological symptoms of dementia may be masked by the emotional sequelae of caregiving, interfering with early diagnosis. Certainly, support services for the entire family group are suggested.

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Impact of Memory Problems Post-stroke on Patients and Their Family Carers: A Qualitative Study

Background: Memory problems post-stroke are common and for some, these problems could then progress to a dementia illness. Once in the community, stroke-survivors are looked after by their family doctors although there is evidence that these patients may struggle to access appropriate help in the community for these problems. Although a stroke-survivor may be physically capable of performing daily tasks, they and their families may have to learn to manage and adapt to their new memory deficits. There is often less focus on cognitive recovery post-stroke from clinical services perhaps because of the lack of awareness and evidence of these adaptations. There is also good evidence that organized stroke care improves physical recovery but no equivalent evidence for the effectiveness of cognitive rehabilitation. The aim of this qualitative study was to report the impact of memory problems on the stroke-survivor and their family once they are living in the community. Methods: Semi-structured interviews were conducted with patients and family carers to gain an in-depth understanding of their experiences. Participants were invited to take part in an interview at around six and 12-months post-stroke. A topic guide was developed to explore participant's care experiences post-stroke when they have also presented with memory difficulties. Data collection and analysis were iterative; all transcripts were anonymized. The data were thematically analyzed. Results: Twenty-two interviews were conducted. Five family carers and ten stroke-survivors were interviewed at six-months post-stroke, of these eight stroke-survivors and four family carers agreed to a 12-month follow-up interview. They identified several areas of impact: (1) impact on daily life; (2) emotional impact; and (3) compensating strategies implemented in response to impact. Conclusion: Living with stroke combined with memory impairment can have negative effects on the stroke-survivor and their family once in the community. Health professionals and services in the community need to recognize the burden of managing symptoms post-stroke for these individuals and their families. Understanding the impact can enable more effective community and specialist support to be provided particularly if we were to also identify those who may then be at risk of a future dementia illness. 

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I'm Here, You're There: In-Absentia Caregiver Stress & Transnational Support of Elderly Mothers by Adult Children

Providing support between generations in a transnational family context is understudied in the aging literature. Specifically, this study investigated the stress experiences and stressors experienced by adult children in the United States when providing transnational support to their elderly mothers in India. Information gathered from two focus groups was supplemented by an online survey of 131 adult children. Participants expressed sentiments of worry, sadness, guilt, and especially helplessness at their limited capacity to care for their mothers from a distance. Results indicate that transnational family aged care is an important dimension of aging that requires further research. In particular, "in absentia caregiver stress" is experienced remotely, and has implications for the immigrant adult's health and well-being. 

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From the carer's mouth: A phenomenological exploration of carer experiences with head and neck cancer patients

Objective: Receiving a diagnosis of head and neck cancer is devastating for patients and family carers and causes high levels of distress. Previous studies report that carer distress levels exceed that of patients, but go largely unnoticed by health professionals. To date, there is a paucity of studies that have described carers' perspectives of the lived experience of caring for a loved one diagnosed with head and neck cancer. The aim of this study was to explore the lived experiences of carers of patients diagnosed with head and neck cancer. Methods: This qualitative study was informed by descriptive phenomenology. Carers of patients who had been diagnosed with head and neck cancer within the last 6 years were recruited from participating hospitals in Perth, Western Australia. Semi‐structured interviews were conducted with 20 carers of patients diagnosed with head and neck cancer. Thematic analysis was conducted to gain an understanding of participants lived experiences. Results: Key themes identified were: Silent Suffering, Gamut of Emotions, Causal Attribution, Changing Priorities, Gaining Support, and Coping. The changing priorities themes highlights that carers prioritised (a) being available for their loved one and (b) taking an active role in managing head and neck cancer symptoms and side effects. Conclusions: Carers of patients diagnosed with head and neck cancer experience distress. Instead of seeking support, carers often elected to suffer in silence. Implications for practice include screening for carer distress and providing specific interventions focused on caring for someone diagnosed with head and neck cancer. 

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Financial stress experienced by informal carers of adults with a chronic disease: Results from an Australian population‐based cross‐sectional survey

Objective: To identify caregiving characteristics that are associated with financial stress in Australian carers of people with a chronic disease. Methods: Data were collected via the South Australian Health Omnibus, an annual population‐based, cross‐sectional survey. Individuals who provided care to someone with prevalent chronic conditions were asked about financial stress and caregiving characteristics. Results: Of 32.4% (988/3047) who were carers, 13.4% (132/988) experienced financial stress. Adjusting for age and household income, providing more than 20 hours of care per week (AOR = 2.39, 95% CI = 1.48‐3.86), transport assistance (AOR = 1.89, 95% CI = 1.15‐3.09) and assistance with household tasks (AOR = 1.92, 95% CI = 1.14‐3.26) and caring for a person with a mental illness (AOR = 2.01, 95% CI = 1.24‐3.28) were associated with a significant increase in odds of experiencing financial stress. Caring for a person with cancer (AOR = 0.49, 95% CI = 0.30‐0.81) or dementia (AOR = 0.40, 95% CI = 0.21‐0.76) was associated with decrease in odds. Conclusions: Financial stress was reported by more than 13% of carers, and factors other than household income were implicated.

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Factors Associated with Distress in Caregivers of People with Personality Disorders

The present study investigated how stressors experienced by caregivers of people with personality disorders relate to each other and psychological distress, using the Stress Process Model (Pearlin et al. in Gerontologist 30(5):583–594, https://doi.org/10.1093/geront/30.5.583, 1990). A community sample of caregivers (N = 106) completed an online survey. Partial Least Squares Path Modelling revealed that caregivers who were male, younger, or residing with their loved one were more likely to experience stressors. Salient primary stressors included the caregivers' worry and care-receivers' levels of instrumental demands and interpersonal problems. Important secondary stressors included strains in the caregivers' schedules, family relationships, and health, as well as reduced mastery and caregiving esteem. The model provided preliminary support for a pathway from demographic and relationship characteristics, through primary and secondary stressors, to heightened psychological distress. The present study clarifies the way caregiving stressors give rise to psychological distress; directions for future research are discussed. 

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Exploring the Relationship between the Caregiver's Stress Load and Dementia Patient Behavior: A Case Study of Dementia Specialist Outpatient Data from the Southern Medical Center of Taiwan

The aim of this study was to explore the relationship between caregivers' stress loads and dementia patient behavior, including the correlation of "patient behavior" (severity and frequency), "social care system", and "stress levels of caregivers". The research method was based on the analysis of survey data collected at a dementia specialist outpatient clinic of a medical center in southern Taiwan from November 2013 to May 2015. Those surveyed by the center included patients who visited the hospital, and their caregivers completed a questionnaire survey. During the study period, a total of 558 questionnaires for 279 pairs were distributed, and all questionnaires were recovered. According to the survey statistics, the average age of the caregivers interviewed was 53.1 years; women accounted for 61.3% of respondents, and the duration of care exceeded three years. In terms of education, most respondents were college/university graduates. The most common surveyed relationship was that of children acting as the caregiver to a parent, and the average age of the patients was 77.73 years. Most caregivers were found to live with the patients (75.3%). In terms of severity and frequency, the surveyed items with the highest average scores were both the "delusion" item of the "patient behavior" facet, the "mental support"(mean = 1.97; standard deviation, SD = 0.869) item of the "social care system" facet, and the "social life stress" (mean = 2.26, SD = 1.510) item of the "Stress levels of caregivers" facet. The research results show that the "patient behavior" and "Stress levels of caregivers" facets have a significant positive correlation, and the "social care system" and "Stress levels of caregivers" facets have a significant negative correlation. In the future, priority of service planning and implementation of long-term policy should be given to home care, since this is a cultural characteristic of Taiwan. In circumstances where a primary caregiver takes care of family members, the patient's behavior, length of care, mental support, and social life issues are key items that should be considered in the social welfare control service to alleviate the load of dementia patients on family caregivers.

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Exploring stress, coping, and decision-making considerations of Alzheimer's family caregivers

More than 15 million Americans are providing care for a family member with Alzheimer's disease. Family caregivers are faced with highly stressful experiences, using strong coping skills, and implementing critical decisions with little or no knowledge or information and with virtually no preparation or assistance. The need for research efforts to focus on caregiver stress, coping mechanisms, and informed decision-making skills spearheaded a theoretical framework to study the potential relationships between family caregivers' types of stress, coping skills, and their decision-making efforts. Constructs of life event stress, role strain, self-concept stress, and coping stress were examined relative to 10 priority areas of decision-making identified by the national Alzheimer's Association. A relational non-experimental research design was utilized. Caregivers completed four Likert-scale instruments with data analyzed using descriptive statistics and rank-order correlation procedures. Findings indicated varying levels of stress, strong family self-efficacy and high levels of coping skills contribute to critical decision-making.

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Experiences with making difficult decisions of the family caregivers of patients on prolonged mechanical ventilation: a qualitative study

Background: Family caregivers of patients on prolonged mechanical ventilation (PMV) may encounter challenges concerning medical decision-making besides witnessing patient suffering. Palliative care (PC) should be a good support for both patients and caregivers; however, for PMV families, PC is not always a choice through long companion time. This qualitative study clarifies family caregivers' burden of assisting patients on PMV and evaluates the need for PC information and support.; Methods: Interviews were caregivers of patients on ventilator support for more than 60 days in five hospitals of the Taipei City Hospital System. Based on phenomenology, this study was conducted by using a semistructured questionnaire comprising three questions: (I) what was the most crucial moment of deciding to intubate? (II) how would you describe the quality of life of your ventilator-dependent family member? (III) what type of assistance do you expect from the PC team for your ventilator-dependent family member?; Results: Twenty-one caregivers of patients on PMV in five hospitals of the Taipei City Hospital System agreed to participate in face-to-face interviews. The identified themes, including stressful decision-making, companion pain/discomfort, and unwillingness to accept PC, elucidated the difficulties experienced by caregivers when providing care.; Conclusions: Understanding family caregivers' experiences can enable physicians to improve communication with them, encourage the PC team to support them during surrogate decision-making for patients on PMV during critical moments, and enhance the overall PC service.

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The experience of family caregivers caring for a patient with chronic disorders of consciousness: a qualitative content analysis

Background: Management of a patient with chronic disorders of consciousness is a long-term and stressful situation for family caregivers. Aims: The aim of this study was to describe the experiences of family caregivers of patients with chronic disorders of consciousness. Methods: Purposeful sampling was used, data were collected through semi-structured, in-depth interviews at participants' homes. Data were analysed using qualitative content analysis. Findings: Results indicated that family caregivers of patients with chronic disorders of consciousness face many difficulties in providing care to vegetative state (VS) and minimally conscious state (MCS) patients; they experience it as a challenging type of care, which influences their mental health. Conclusion: Family caregivers are faced with many challenges because of the high burden of care, round-the-clock concern, taking care of an alive but unresponsive patient without receiving enough support. They experience mental and inner turmoil because of social isolation and dealing with contradictory feelings in their daily life.

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Effects of Psychosocial Interventions and Caregiving Stress on Cardiovascular Biomarkers in Family Dementia Caregivers: The UCSD Pleasant Events Program (PEP) Randomized Controlled Trial

Background: This study examined whether biological mechanisms linking dementia caregiving with an increased risk of coronary heart disease can be modified by psychosocial interventions and which caregivers might benefit the most from an intervention. Methods: Spousal dementia caregivers were randomized to 12-week treatment with either a behavioral activation intervention (ie, Pleasant Events Program [PEP]; n = 60), or an active control Information and Support (IS; n = 63) condition. Indicators of caregiving stress were assessed pretreatment and circulating cardiovascular biomarkers were measured pre- and posttreatment. Results: There were no significant changes in biomarker levels from pre- to posttreatment both by treatment condition and across all caregivers. Regardless of the treatment condition, exploratory regression analysis revealed that caregivers were more likely to show significant decreases in C-reactive protein (CRP) and D-dimer when their spouse had severe functional impairment; in interleukin (IL)-6 and CRP when they had greater distress due to care recipient's problem behaviors; in tumor necrosis factor (TNF)-α when they had higher levels of negative affect; and in IL-6, CRP, TNF-α, and D-dimer when they had higher personal mastery. Within the PEP group, caregivers with higher negative affect and those with higher positive affect were more likely to show a reduction in von Willebrand factor and D-dimer, respectively. Within the IS group, caregivers whose spouse had severe functional impairment were more likely to show a decrease in IL-6. Conclusions: Unlike the average caregiver, caregivers high in burden/distress and resources might benefit from psychosocial interventions to improve cardiovascular risk, although these observations need confirmation. 

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The Effect of Emotion Regulation Training on Stress, Anxiety, and Depression in Family Caregivers of Patients with Schizophrenia: A Randomized Controlled Trial

Schizophrenia is the most severe chronic disabling psychiatric disorder that needs long term care in various aspects. Therefore, the family's emotional atmosphere caused by the disease affects the condition of the patients' caregivers. This study aimed to investigate the effect of emotional regulation training on stress, anxiety, and depression in caregivers of patients with schizophrenia. The study was a randomized controlled trial. Seventy caregivers of patients with schizophrenia randomly assigned to a group that received emotion regulation training and a control group. The intervention group was trained about emotion regulation during eight 90-min sessions. The participants completed the Depression, Anxiety and Stress Scales-21 questionnaire before and one month after the intervention. The results showed that stress, anxiety and depression scores significantly reduced in the intervention group compared to the control group. Emotional regulation training with cognitive methods has significantly reduced the anxiety, stress, and depression of caregivers of patients with schizophrenia. 

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Caring for a spouse with advanced cancer: similarities and differences for male and female caregivers

Most caregiving literature has focused on women, who have traditionally taken on caregiving roles. However, more research is needed to clarify the mixed evidence regarding the impact of gender on caregiver/patient psychological outcomes, especially in an advanced cancer context. In this paper, we examine gender differences in caregiver stress, burden, anxiety, depression, and coping styles, as well as how caregiver gender impacts patient outcomes in the context of advanced cancer. Eighty-eight patients with advanced cancer and their caregivers completed psychosocial surveys. All couples were heterosexual and most caregivers were women (71.6%). Female caregivers reported significantly higher levels of perceived stress, depression, anxiety, and social strain compared with male caregivers, and female patients of male caregivers were more likely to use social support as a coping style compared with male patients of female caregivers. These findings highlight the potential differences between male and female caregivers' needs and psychological health. 

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Caring for a family member with intellectual disability into old age: Applying the sociocultural stress and coping model to Italian and Greek migrants in Australia

Background: Little is known about how older parent caregivers from culturally and linguistically diverse (CALD) backgrounds experience caring for their family member with intellectual disability into late life. Method: In‐depth semi‐structured interviews were carried out with N = 19 family caregivers aged 50–91 from ten Italian and four Greek families. The Sociocultural Stress and Coping Model was used as a framework to interpret their experiences. Results: A number of stressors including the need to make sacrifices, physical and emotional demands, uncertain futures and challenges associated with "the system" were identified. While family members play a key role in providing support, changing values around filial responsibility were evident. Discussion: Further attention needs to be given to CALD families to address challenges associated with caring for their family member with intellectual disabilities as they age. This study also challenges assumptions that CALD families prefer to keep caring within the family long‐term.

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Care stress in caregivers of disabled stroke patients: a cross-sectional survey

Background: A cross-sectional survey was performed on the family members of disabled stroke survivors, those who are both the patient's medical authorizer and caregiver,to identify the sources of the caring stress and inform appropriate interventions.; Methods: A total of 242 family members of stroke patients, who were treated in a tertiary geriatric hospital in Haikou, the capital city of Hainan Province, were enrolled in the current study by using convenience sampling. Questionnaire forms were used to investigate care stress caused by family members' current care activitiesand analyze its causes.; Results: The care stress of the family members was moderately positively correlated with financial pressure (r=0.476, P<0.01). Family members' educational background, financial pressure, the times of hospitalizations, the dependency of stroke patients, and the degree of family members' participation in treatment decisionmaking during the patient's hospital stay were the primary sources of the caring stress (P<0.05 or P<0.01).; Conclusions: A substantial proportion of family members are under high stress when caring for disabled stroke patients. Strategies including knowledge training, empowerment, home-based rehabilitation, and information and emotional support may effectively relieve the caring stress, to improve the family support of patients, improve the quality of life of both patients and caregivers, and enhance the rehabilitation effectiveness.

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Anxiety and depression in informal caregivers of dependent elderly people: an analytical study

Objective: To analyze the symptoms of anxiety and depression in informal caregivers of dependent elderly at home.; Methods: Analytical, cross-sectional study conducted in the city of Teresina (PI), with informal caregivers of dependent elderly people. Data collection took place from November 2017 to February 2018, using a characterization form for the dependent elderly and their caregiver, Beck's Anxiety Inventory (BAI) and Beck's Depression Inventory (BDI). The forward linear regression model was used to identify the predictive variables of anxiety and depression.; Results: It was found that 18.4% of caregivers had symptoms of depression; and 14%, moderate to severe anxiety. There was a correlation between anxiety and depression (p = 0.000).; Conclusion: The findings of this study make it possible to assess anxiety and depression in caregivers of dependent elderly people, making it possible, through these parameters, to view the profile and care demands of this population.

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1 in 5 North Carolina Adults are Caregivers: Addressing Unpaid Family Caregiver Burden with Supportive Services

Medical advances paired with expanding home care technology and shorter hospital stays have placed increased responsibilities on family and friends. Yet, most caregivers report they are ill-prepared for their role. There are services and supports specifically designed to assist family caregivers. Three days stand out from the last 10 years of working with family caregivers in North Carolina. They each began with a phone call. One came at the start of a Monday, one as I was readying to leave for the day, and the third somewhere in the middle. All of them were memorable for their raw desperation, their honesty, and the glimpse they provided into Carolina families and the lives made fragile by caregiving.

The Monday morning call was from someone at a regional organization who had hired a local home care agency to provide overnight weekend respite care to relatives of an older woman. The family was supposed to return Monday morning to relieve the home care worker, but the agreed-upon time came and went. A few phone calls by the home care agency revealed that the family had decided not to come back, ever. They shared that they had done all they could for their grandmother and that it was time for someone else to take care of her.

The end-of-day call was from a woman who was very careful not to give any hints of identity or location. She asked me what would happen if we got a call from a payphone telling us that there was a man home alone in serious need of care. Would someone be sent to take care of him? Would he be okay? I could hear need in her voice and I tried to get more information so we could reach out with possible help, but she would not share. Things she said led me to believe she was the caregiver for her husband, and at the very end of her strength to continue in that role.

The last call was from a woman in her 30s. She had a disabling condition and was no longer able to bathe herself. Her caregiver was a male relative and neither of them were comfortable with him bathing her. She had no one else to help, could not afford to hire someone for this, and did not qualify for public assistance. Every service I mentioned, she replied that she had already tried it and been told no. I spent the rest of the afternoon coming up empty as I looked for a solution that would preserve this woman's dignity and independence.

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Predictors of caregiver distress among spouses, adult children living with the person with dementia, and adult children not living with the person with dementia

Aim The caregiving situation differs according to the type of relationship between the patient caregiver, and among dementia caregivers, living with the person with dementia can contribute to caregiver distress. This study aimed to identify the predictors of caregiver distress based on caregiver profile: spouse, adult child living with the person with dementia, and adult child not living with the person with dementia. Method In total, 213 caregivers participated in this study. Their responses to questionnaires helped identify the positive and negative implications of the caregiving situation and the level of caregiver distress. The analyses consisted of univariate and multiple linear regression models using a forward method. Results Based on the standardized beta scores, the variables that are the most significant in predicting spouse caregiver distress are the impact on health and impact on schedule. The variable that is the most significant in predicting the distress of adult child caregivers living with the person with dementia is the impact on health. The variables that are the most significant in predicting the distress of adult child caregivers not living with the person with dementia are the impact on health, impact on schedule, and impact on finances. Conclusion The results make it possible to consider different approaches to providing support, including evaluating the health of all caregivers, giving guidance on accepting help and focusing caregivers' actions on their values for spouse caregivers, providing family mediation for adult child caregivers living with the person with dementia, and offering information and assistance on the available aids for adult child caregivers not living with the person with dementia.

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Care Demands and Well-Being of Primary and Secondary Non-Spousal Caregivers of Aging Adults

Objectives: Compare care demands, strain, and health across 912 primary and secondary caregivers of parents, other family, and friends aged 50 and older. Methods: Data came from the nationally representative Caregiving in the U.S. 2015 data set. Two by three factorial ANOVAs and binary logistic regression examined the effects of primary caregiver status and relationship type on care demands and well-being. Results: Primary caregivers provided more hours of care for a longer duration and were more likely to report financial stress, and that caregiving made their health worse. Primary caregivers did not differ from secondary caregivers in emotional stress, and physical strain was comparable in primary and secondary caregivers of parents and other family. Caregivers of parents generally reported the highest levels of demands and stress/strain. Controlling for amount of care provided attenuated some of these differences. Conclusions: Secondary caregivers provide less care but report emotional stress comparable to primary caregivers. Primary caregivers of friends provide high levels of assistance that may increase their physical strain. Clinical Implications: Caregiver research and intervention should include greater attention to needs of secondary caregivers, and caregivers of friends, and ways to strengthen their potentially critical roles.

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2020 Vision: Hear Me, See Me, Support Me and don’t Forget Me.

The results of a Carers Trust Scotland survey into the impact of Coronavirus on young carers aged 12 to 17 and young adult carers aged 18 to 25 was published in July 2020. They point to a steep decline in the mental health and wellbeing of thousands of young people across Scotland who provide unpaid care at home for family members or friends.

Key points: With 214 responses from across Scotland, our survey provides a base of evidence. It shows how worries relating to Coronavirus and increased isolation caused by the lockdown have affected the mental health and wellbeing of Scotland's young people with caring responsibilities. Even before the outbreak of Coronavirus, young carers and young adult carers were all too often spending significant amounts of time caring for a relative in addition to the time they needed to spend on education, work and time for themselves. Coronavirus has significantly increased those pressures.

  • 45% of young carers and 68% of young adult carers in Scotland say their mental health is worse since Coronavirus.
  • 71% of young carers and 85% of young adult carers in Scotland are more worried about the future since Coronavirus.
  • 69% of young carers and 76% of young adult carers in Scotland are feeling more stressed since Coronavirus.
  • 74% of young carers and 73% of young adult carers in Scotland are feeling less connected to others since Coronavirus.
  • 58% of young carers in Scotland are feeling that their education has suffered since Coronavirus.
  • 11% of both young and young adult carers in Scotland report an increase of 30 hours or more in the amount of time they spend caring per week.
  • 6% of young carers and 11% of young adult carers in Scotland are spending over 90 hours a week caring for a family member or friend.
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People with learning disabilities and/or autism and their carers getting older: Confronting a Looming Crisis

Increased longevity means that an increasing proportion of people living with a learning disability are aged 45 and over and are transitioning into older age/retirement. It also means that ageing family members are increasingly playing an extended caregiving role into later life. A small scale study was carried out in the New Forest, Hampshire during 2018-19. Twenty-one older carers (5 were male) were interviewed about their experiences of caring for their older adult family members with learning disabilities and/or autism. The average age of the carers was 75 though 20% of the sample were over 80 years old.

Key findings:

Older carers are struggling to continue to care for their loved ones. Four main themes described their struggles:

1. Transition to retirement was felt to be a misnomer in the face of continuing responsibilities and duties to care and/or manage care. Little respite was available to take a break, take stock, or just do the things that most other ‘retired people’ do.

2. The Care Act 2014, despite its laudable goals, is yet to be applied sufficiently well to make a difference to the lives of people with learning disabilities and/or autism or their carers who took part in this study.

3. Challenges with social service provision including lack of continuity of social worker input, variable and declining levels of expertise, and pejorative attitudes towards carers appears to be worsening. That said, carers are understanding of the pressures on health and social care and are willing to work with them to improve the situation.

4. Carers’ fears for the future as they contemplate who will care for their loved one once they are no longer able to care for them.

There is a need for age-appropriate housing, weekend activities for people with learning disabilities, and respite for carers. Transformational change which includes trust-building and co-production between health and social services and carers is  needed to improve relationships between the parties. Meaningful partnerships between social workers and carers will reduce the problem of the frequent need of carers to urge social services to provide adequate care and support. Information on options for people with learning disabilities transitioning into old age as well as practical support will help reduce the risk of crisis situations happening when older carers can no longer care. 

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Covid-19 and the Impact on Family Carers

This paper will examine key rapid surveys and research studies which have been conducted by various researchers and organisations both in a specifically Irish context and internationally.

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Examining the effects of activities of daily living on informal caregiver strain

Objectives: This study examines the factors associated with caregiver strain experienced by informal caregivers of older people, using data from Ireland. Methods: The analysis is based on a sample of 1394 informal caregivers obtained from Ireland’s Quarterly National Household Survey (2009). The Caregiver Strain Index is used to measure caregiver strain on a scale from 0 to 13. The analysis focuses on estimating the association between caregiving activities (measured using Activities of Daily Living) and caregiver strain, using multivariate regression analysis. Results: Overall, 60% of informal caregivers report feeling strained. The results suggest that different types of caregiving assistance are associated with increasing caregiver strain, in line with Pearlin’s conceptual model of Stress Process theory and Process Utility theory of informal care. Female caregivers have significantly higher levels of strain. Moreover, caregiver strain amongst co-residential caregivers is 0.8 points higher compared to those who are non-resident. Conversely, caregivers over 65 years are less prone to strain than younger caregivers. The condition of the dependent is also a statistically significant factor: caring for someone with a physical condition, a mental condition or both a physical and mental condition, increases caregiver strain. Conclusions: As Ireland and Europe’s populations are ‘greying’, sustainable systems and supports need to be designed to meet demand for care that limit strain for caregivers. In doing so, policymakers and their advisors need to better understand the impact of informal caring on caregivers.

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Uncertainty in Transition of African American Caregivers

The purpose of this study was to gain an understanding of the ambiguities and uncertainties experienced by a diverse group of African-American caregivers. The study applied Schlossberg's transition theory (TT) and Mishel’s revised uncertainty theory to narratives of self-identified African-American caregivers who provided care at least 5 h a week. The men (6) and women (8) were mostly unmarried, mostly caring for a parent or grandparent. The caregivers’ average age was 52 (SD = 19; ages ranged from 24 to 82 years); and the care recipients’ average age was 84 (SD = 9). Six care recipients had dementia and the remainder had multiple disease diagnoses. Narratives were obtained by in-depth interviews or focus group discussions. These were audio-recorded, transcribed verbatim professionally and analyzed independently by trained coders. Schlossberg’s TT contextualized whereas Mishel’s RUIT illuminated the characteristics of the transition, its associated uncertainty, and their relationship to the development of caregiver stress. Situational factors such as difficulties with illness symptoms of the care recipient, conflict between previous experience and current expectations and the adjustments to the new caregiving role, burdened younger caregivers more than older caregivers. Self-factors related to lack of knowledge about the illness and feelings of lack of control. Social support was predominantly provided by family members, and its absence resulted in conflict among siblings and caregiver stress. The most common coping strategies include religiosity, expectations of reciprocity, and coming to terms with the uncertainty. Understanding the feelings, perceptions and needs of caregivers in transition is tantamount to providing nursing care. 

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Carers' experiences of involuntary admission under mental health legislation: systematic review and qualitative meta-synthesis

Background Carers are key providers of care and support to mental health patients and mental health policies consistently mandate carer involvement. Understanding carers' experiences of and views about assessment for involuntary admission and subsequent detention is crucial to efforts to improve policy and practice. Aims We aimed to synthesise qualitative evidence of carers' experiences of the assessment and detention of their family and friends under mental health legislation. Method We searched five bibliographic databases, reference lists and citations. Studies were included if they collected data using qualitative methods and the patients were aged 18 or older; reported on carer experiences of assessment or detention under mental health legislation anywhere in the world; and were published in peer-reviewed journals. We used meta-synthesis. Results The review included 23 papers. Themes were consistent across time and setting and related to the emotional impact of detention; the availability of support for carers; the extent to which carers felt involved in decision-making; relationships with patients and staff during detention; and the quality of care provided to patients. Carers often described conflicting feelings of relief coupled with distress and anxiety about how the patient might cope and respond. Carers also spoke about the need for timely and accessible information, supportive and trusting relationships with mental health professionals, and of involvement as partners in care. Conclusions Research is needed to explore whether and how health service and other interventions can improve the involvement and support of carers prior to, during and after the detention of family members and friends.

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Identifying treatment effects of an informal caregiver education intervention to increase days in the community and decrease caregiver distress: a machine-learning secondary analysis of subgroup effects in the HI-FIVES randomized clinical trial

Background Informal caregivers report substantial burden and depressive symptoms which predict higher rates of patient institutionalization. While caregiver education interventions may reduce caregiver distress and decrease the use of long-term institutional care, evidence is mixed. Inconsistent findings across studies may be the result of reporting average treatment effects which do not account for how effects differ by participant characteristics. We apply a machine-learning approach to randomized clinical trial (RCT) data of the Helping Invested Family Members Improve Veteran's Experiences Study (HI-FIVES) intervention to explore how intervention effects vary by caregiver and patient characteristics. Methods We used model-based recursive partitioning models. Caregivers of community-residing older adult US veterans with functional or cognitive impairment at a single VA Medical Center site were randomized to receive HI-FIVES (n = 118) vs. usual care (n = 123). The outcomes included cumulative days not in the community and caregiver depressive symptoms assessed at 12 months post intervention. Potential moderating characteristics were: veteran age, caregiver age, caregiver ethnicity and race, relationship satisfaction, caregiver burden, perceived financial strain, caregiver depressive symptoms, and patient risk score. Results The effect of HI-FIVES on days not at home was moderated by caregiver burden (p < 0.001); treatment effects were higher for caregivers with a Zarit Burden Scale score <= 28. Caregivers with lower baseline Center for Epidemiologic Studies Depression Scale (CESD-10) scores (<= 8) had slightly lower CESD-10 scores at follow-up (p < 0.001). Conclusions Family caregiver education interventions may be less beneficial for highly burdened and distressed caregivers; these caregivers may require a more tailored approach that involves assessing caregiver needs and developing personalized approaches.

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Living with Chronic Heart Failure: Exploring Patient, Informal Caregiver, and Healthcare Professional Perceptions

Due to the complexity of heart failure (HF) and its treatment process, a high level of patient and informal caregiver engagement is required for management results. We aimed to explore the views of HF patients, informal caregivers, and healthcare professionals about personal experiences, perceived needs, and barriers to optimal HF management. A qualitative study using semi-structured interviews with HF patients (n = 32), their informal caregivers (n = 21), and healthcare professionals (n = 5) was conducted in the outpatient HF clinic in Slovenia in 2018. A content analysis method was used to analyze the data. Negative emotional response to disease and its limitations (especially the inability to continue with work) and changes in family roles were the most prevalent topics regarding the impact of HF on livelihood. Among the most common barriers to HF self-care, were the difficulties in changing lifestyle, financial difficulties due to the disease, traditional cuisine/lack of knowledge regarding a healthy diet and lack of self-confidence regarding physical activity. Despite psychological and social difficulties due to HF being highlighted by patients and informal caregivers, only healthcare professionals emphasized the need to address psychosocial aspects of care in HF management. Established differences could inform the implementation of necessary support mechanisms in HF management.

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Covid-19: Impact & Need for People with Dementia and Family Carers

This report produced by The ASI summarises the results of three surveys that were distributed to people living with dementia, family carers, and Community Champions (Understand Together). The aims of this report are threefold:

1. To identify the current challenges experienced by people with dementia and family carers in the current Covid-19 Pandemic through simple surveys.

2. To bring together suggestions from people with dementia and family carers of how ASI can continue to support them in lieu of suspended services.

3. To communicate the above work in an accessible way to the committee in such a way that will enable the committee to review and shortlist the evidence in a timeline manner.

Results are presented for each individual cohort: People living with dementia, Family Carers, and Community Champions. 

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The mediational role of burden and perceived stress in subjective memory complaints in informal cancer caregivers

The role of informal caregiver of cancer patients is considered a situation of chronic stress that could have impact on cognitive functioning. Our aim was to evaluate differences in perceived stress, subjective memory complaints, self-esteem, and resilience between caregivers and non-caregivers, as well as the possible mediational role of burden in caregivers. The sample was composed of 60 participants divided into two groups: (1) Primary informal caregivers of a relative with cancer (CCG) (n = 34); and (2) non-caregiver control subjects (Non-CG) (n = 26). All participants were evaluated through a battery of tests: Socio-demographic questionnaire, subjective memory complaints questionnaire (MFE-30), Rosenberg Self-Esteem Scale, resilience (CD-RISC-10), and perceived stress scale (PSS). The CCG group also completed the Zarit burden interview. Results indicated that CCG displayed higher scores than Non-CG in MFE-30 (p = 0.000) and PSS (p = 0.005). In the CCG group, Pearson correlations indicated that PSS showed a negative relationship with resilience (p = 0.000) and self-esteem (p = 0.002) and positive correlation with caregiver’s burden (p = 0.015). In conclusion, CCG displayed higher number of subjective memory complaints and higher perceived stress than Non-CG, whereas no significant differences were obtained on self-esteem and resilience. These results could aid in designing new intervention strategies aimed to diminish stress, burden, or cognitive effects in informal caregivers of cancer patients. 

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Assessment of Distress among Patients and Primary Caregivers: Findings from a Chemotherapy Outpatient Unit

Background: Chemotherapy is one of the treatment modalities for cancer. The side effects of treatment, at times, can affect the emotional well-being of patients and their caregivers, thereby leading to distress. This paper aims at screening and identifying levels of distress among patients undergoing chemotherapy and their caregivers. Subjects and Methods: A cross-sectional study design was used. Patients (n = 102) undergoing chemotherapy in the outpatient daycare unit and their caregivers (n = 101) were screened for distress using the National Comprehensive Cancer Network distress thermometer and the problem checklist. Data were analyzed using descriptive and inferential statistics. Results: Patients (53.4%) and their caregivers (22.2%) reported experiencing moderate-to-severe levels of distress. Patients reported significant distress in the areas of physical (P = 0.000) and emotional problems, whereas caregivers reported distress in the areas of family (P = 0.000) and emotional problems. There was no significant difference in emotional problems (P = 0.05) between the patients and their caregivers. There was a positive correlation between physical and emotional problems (r = 0.760, P = 0.000). Majority of patients (85.2%) and caregivers (80.1%) showed interest to avail psycho-oncology services. Conclusions: Distress is prevalent among patients with cancer undergoing chemotherapy and their caregivers. Clinical implications highlight the need to identify and address caregiver distress during routine distress screening for patients using specific psychosocial interventions. Future research warrants the use of administering specific assessments to identify severe psychological issues, such as depression and anxiety for patients reporting severe levels of distress on the screening tool.

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Comparison of the Effect of Nurses' Education on Stress, Anxiety and Depression of Family Caregivers of Patients Hospitalized with Schizophrenia Disorder

Background of the Study: The present study aimed to determine the effectiveness of family education on depression, anxiety, and stress of family caregivers of the patients with schizophrenic disorders hospitalized in Zahedan Psychiatric Hospital. Methods: The present study was a randomized clinical trial; it evaluated the effect of a four-week psychological training program on 100 family caregivers of the patients with schizophrenic disorders hospitalized in Zahedan Psychiatric Hospital. Depression, anxiety, and stress of caregivers were determined using DASS, version 21, questionnaire. Results: Based on the analysis, the effect of education was only observed in the nurses' group, and the level of anxiety, stress, and depression decreased significantly. Having compared between the nurse and control group, the anxiety level in this group decreased significantly after the training program, and the two factors of stress and depression decreased considerably and tended to be significant. Results: In summary, the present study has shown that nursing education had a significant impact on anxiety, stress and depression factors in the patients' families; this can be employed as a new approach to improve schizophrenia patients and their families.

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Persistent barriers and facilitators to seeking help for a dementia diagnosis: A systematic review of 30 years of the perspectives of carers and people with dementia

Objective: To identify barriers and facilitators to help seeking for a dementia diagnosis from the perspective of carers and people with dementia.Design: A systematic review of the literature was conducted according to the PRISMA guidelines (PROSPERO protocol registration CRD42018092524). Nine electronic databases were searched for qualitative, quantitative, and mixed methods primary research studies. Two independent reviewers screened titles and abstracts, full texts of eligible studies, and conducted quality appraisal of included articles. A convergent qualitative synthesis approach was used. Results: From 7496 articles, 35 papers representing 32 studies from 1986 to 2017 were included. Studies originated from 13 countries across 4 continents. Barriers and facilitators were reported predominantly by carers. A small number of studies included people with dementia. Barriers included denial, stigma and fear, lack of knowledge, normalization of symptoms, preserving autonomy, lack of perceived need, unaware of changes, lack of informal network support, carer difficulties, and problems accessing help. Facilitators included recognition of symptoms as a problem, prior knowledge and contacts, and support from informal network. Conclusions: Studies from a 30-year period demonstrated that barriers to help seeking persist globally, despite increasing numbers of national dementia policies. Barriers and facilitators rarely existed independently demonstrating the complexity of help seeking for a diagnosis of dementia. Multiple barriers compounded the decision-making process and more than one facilitator was often required to overcome them. Multi-faceted interventions to reduce barriers are needed, one approach would be a focus on the development of dementia friendly communities to reduce stigma and empower people with dementia and carers. 

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Lived experiences of caregivers of patients with borderline personality disorder: A phenomenological study

Background: Having a patient with borderline personality disorder (BPD) in the family is a complicated and stressful experience. The caregivers’ experiences and the problems they have in care of patient with BPD have remained unknown. The aim of this research was to explore the experiences of the caregivers while living with BPD patients in Iran. Methods: This interpretive phenomenological research was performed on 10 caregivers of patients with BPD at Ibn-sina Hospital in Mashhad, Iran, in 2019. Purposeful sampling was used for sampling. Data were collected through semi-structured interviews and saturated after 16 interviews. The analysis of data was concurrently carried out using the method proposed by Diekelman (1989). The MAXQDA software (Ver.10) was used for data organization. Results: The participants in this study were aged 25 to 55 years. After data analysis, three themes (“life in hell”, “chain to the feet”, and “black shadow of stigma”) and six sub-themes (“disrupted from the life”, “self-discrepancy”, “care bottlenecks”, “in the fence of restriction”, “society dagger” and “resort to secrecy”) emerged. Conclusion: The results of this study showed that the caregivers of patients with BPD during the period of care were faced with a variety of problems. It is suggested that health policy-makers should pay more attention to the problems related to the mental health of caregivers. 

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Stress in the volunteer caregiver: Human-centric technology can support both caregivers and people with dementia

Background and Objectives: Currently, one in eight people over the age of 65 have dementia, and approximately 75% of caregiving is provided by volunteer family members with little or no training. This study aimed to quantify points of stress for home-based caregivers with the aim of reducing stress for them while concurrently supporting quality of life for the people with dementia whom they cared for. The overreaching purpose was to increase our knowledge of the caregiver stress burden and explore potential technologies and behaviors to ease it. Materials and Methods: We interviewed home-based and professional caregivers regarding causes of emotional and physical stress and methods they used to alleviate it. Results: This study found that: (1) dementia symptoms created a burden of stress for home-based caregivers primarily in the areas of medication management, memory loss, hygiene care and disruptive behaviors; (2) home-based caregivers identified “finding available resources” as the most important source of stress relief; (3) a minority of home-based caregivers possessed a resource network and knew how to find resources but all professional caregivers were able to find resources and support; (4) home-based caregivers combated dementia symptoms with positive distractions and human touch with little use of technology, since it was mostly unknown; and 5) facility-based caregivers were knowledgeable and readily used dementia-based technology. Conclusion: Since professional caregivers have access to technological resources that our home-based caregivers lack, one might logically conclude that we should transfer technology used by professionals to those with dementia. However, great caution needs to be in place before we take that step. Successful technology should address the human experience as home-based caregivers try to use new technologies. Human-centric technology addresses the needs of both people with dementia and the home-based caregiver. 

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Experiences of spouses of patients with cancer from the notification of palliative chemotherapy discontinuation to bereavement: A qualitative study

Purpose: Many patients with advanced cancer choose palliative chemotherapy. Considering its purpose of palliation and not treatment, it is important to consider the life of family caregivers. Family caregivers who experience bereavement undergo extreme stress, which is particularly high among patients’ spouses. The present study aims to clarify the experiences of the spouses of patients at the hospitals in Japan after the notification of palliative chemotherapy discontinuation until bereavement. Method: We interviewed the spouses of 13 patients who received palliative chemotherapy using a semistructured interview guide. Each spouse was interviewed twice. The interviews were transcribed verbatim, and key concepts were identified using a grounded theory analytic approach. Results: After the hospital's recommendation for palliative chemotherapy discontinuation, the spouses had “bewilderment over having to discontinue palliative chemotherapy” and experienced “difficulty in facing bereavement.” The spouses having “difficulty to give up hope for the patient's survival,” felt “bafflement over caregiving at the terminal stage,” which would be their responsibility in the future. Further, they had “hesitation in being honest to the patient” and were engaged in “knowing how to live with the patient until bereavement.“ Conclusion: Nurses need to encourage the patients and spouses to honestly express how they feel from the early stages of palliative chemotherapy. Furthermore, nurses should help spouses with how they face bereavement. This result may help prevent anticipatory grief, which may lead to excessive stress and emotional distress on the family caregivers. 

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Effect of education and telephone counseling on caregiver strain and unmet needs in family caregivers and self-care behaviors in patients with cancer: A randomized clinical trial

Background: Cancer treatment has been increasingly fulfilled on an outpatient basis by family caregivers. The variety and severity of caregivers' responsibilities expose them to physical and mental risks. Investigating the effect of education and telephone counseling on patient and family outcomes requires performing further studies. Aim: This study aimed to determine the effect of education and telephone counseling on caregiver strain and unmet needs in family caregivers and self-care behaviors in cancer patients. Method: The present randomized controlled trial was conducted on 60 caregivers-cancer patients referred to urban health education clinics in northeastern Iran within 2018-2019. A 20-minute face-to-face training session was held for the caregivers of cancer patients, and seven training pamphlets were given to the caregivers. Moreover, the intervention group received four telephone counseling sessions during three courses of chemotherapy. The strain and unmet needs of caregivers were measured by the Zarit Burden Interview and Supportive Care Needs Survey-Partners and Caregivers questionnaires, respectively. The patient self-care was assessed by the Nail Self-care Diary questionnaire. The data were analyzed by SPSS software (version 16) using an independent t-test and paired t-test. Results: The mean values of caregivers' age were 38.9±12.7 and 37.7±8.6 years in the intervention and control groups, respectively. The results of the independent t-test showed no statistically significant difference between the two groups (P=0.42). The results also revealed that the mean scores of caregiver strain and unmet needs decreased following the intervention, and the mean scores of self-care behaviors increased in the intervention group after the intervention (P=0.001). Implications for Practice: Education and telephone counseling can simultaneously help to follow up problems, improve self-care behaviors in cancer patients, alleviate the caregiver strain, and meet the needs of family caregivers. 

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Outcomes and change processes of an established family education program for carers of adults diagnosed with a serious mental health condition

Background Family education programs (FEPs) target caregiving-related psychological distress for carers of relatives/friends diagnosed with serious mental health conditions. While FEPs are efficacious in reducing distress, the mechanisms are not fully known. Peer group support and greater mental health knowledge are proposed to reduce carers' psychological distress by reducing stigmatising attitudes and self-blame, and strengthening carers' relationship with their relative. Methods Adult carers (n = 1016) who participated in Wellways Australia's FEP from 2009 to 2016 completed self-report questionnaires at the core program's start and end, during the consolidation period, and at a 6-month follow-up. Those who enrolled early completed questionnaires prior to a wait-list period. We used linear mixed-effects modelling to assess the program's effectiveness using a naturalistic wait-list control longitudinal design, and multivariate latent growth modelling to test a theory-based process change model. Results While there was no significant change over the wait-list period, psychological distress, self-blame and stigmatising attitudes significantly decreased, and communication and relationship quality/feelings increased from the core program's start to its end. Changes were maintained throughout the consolidation period and follow-up. Peer group support significantly predicted the declining trajectory of distress. Peer group support and greater knowledge significantly predicted declining levels of self-blame and stigmatising attitudes, and increasing levels of communication. Conclusions This is the first study to quantitatively validate the mechanisms underlying the effect of FEPs on carers' psychological distress. Peer group support is key in modifying carers' appraisals of their friend/relatives' condition. Continued implementation of FEPs within mental health service systems is warranted. 

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I’ll Be a Caregiver-Employee: Aging of the Workforce and Family-to-Work Conflicts

Background: The double role of caregiver-employee (CE) defines those workers who simultaneously serve as an informal, unpaid care provider for sick, disabled, or elderly relatives, and it is a situation that is on the increase in most western countries. Providing informal caregiving can lead to detrimental effects on emotional well-being and several physical and psychological diseases (e.g., caregiver-burden). CEs can suffer double discomfort (at work and at home), but, first of all, they can be exposed to a high level of home-to-work conflict (HWI). In this study, we analyzed the CE phenomenon in a typical Italian public company, where the mean age of workers is particularly high. Methods: An online questionnaire related to the perception of HWI, well-being, and discomfort at work (depression, emotional exhaustion, job engagement) in relation to the family load (none, parents with <12 children to care for, caregiver to other adults, or children and older adults to care for/old/children to care for employees) was answered by 1704 administrative workers. Results: More than 20% of our sample was included in the elder caregiver condition or in the double role or “sandwiched” condition with older adults and children to care for. The family load changed significantly between the different age groups: for workers aged between 55 and 64 years, the percentage was nearly 27%. CEs had higher levels of HWI and of personal and job discomfort and lower levels of engagement, when compared with non-CEs. Having “only” older adults to care for (the typical CE condition) was associated with having the most negative results. Conclusion: This study confirms and underlines the increasing number of CEs in western organizations and their higher levels of HWI, work disengagement, emotional exhaustion, and depression. As the general population and workforce experience increased “graying,” and many more workers become CEs out of necessity, stable caregiver-friendly workplace policies (CFWPs) should be developed. 

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Family Caregivers’ Anticipatory Grief: A Conceptual Framework for Understanding Its Multiple Challenges

The end-of-life trajectory of cancer patients in palliative care (PC) elicits an anticipatory grief (AG) process in family caregivers (FCs). Although widely recognized, AG lacks conceptual clarification. This study aims to qualitatively explore the experience of FCs of patients with terminal cancer to identify the core characteristics and the specific adaptive challenges related to AG in the context of end-of-life caregiving. Data were collected through in-depth semi-structured interviews conducted in a clinical sample of 26 FCs of cancer patients in PC. Findings from thematic analysis suggest that the AG experience is characterized by traumatic distress from being exposed to life-threatening conditions and the separation distress induced by loss anticipation and current relational losses, challenging the FCs to long-term emotional regulation effort demands. These results contribute to the conceptualization of AG and may inform intervention programs for the main challenges the FCs face when adjusting to loss during end-of-life caregiving. 

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Does the experience of caring for a severely disabled relative impact advance care planning? A qualitative study of caregivers of disabled patients

The aging of the Taiwanese population has become a major issue. Previous research has focused on the burden and stress faced by caregivers, but has not explored how the experience of these caregivers influences decisions of advance care planning (ACP). Semi-structured and in-depth interviews were conducted. Qualitative content analysis was used to identify important themes. Five themes and fourteen sub-themes were identified: (1) Past experiences: patient wishes, professional recommendations, and expectation about disease progress; (2) Impact of care on family members: positive affirmation, open-minded life, social isolation and health effects, and financial and life planning effects; (3) Attitude toward life: not forcing to stay, and not becoming a burden, (4) Expected proxy dilemmas: torment between doing or not, seeing the extension of suffering and toil, and remorse and self-blame; (5) Expectation of end of life (EOL) care: caregiver’s experience and EOL care decisions, and practicality of EOL decision making. After making multiple medical decisions for their disabled relatives, caregivers are able to calmly face their own medical decisions, and “not becoming a burden” is their primary consideration. It’s suggested that implementation of shared decision-making on medical care for patients with chronic disability will not only improve the quality of their medical care but also reduce the development of remorse and guilty feelings of caregivers after making medical decisions. 

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Understanding the Impacts of Caregiver Stress

PURPOSE/OBJECTIVES: Identifying risk factors associated with caregiver stress and suggesting methods for systematic caregiver screening for caregiver strain, depression, and anxiety. PRIMARY PRACTICE SETTING: Emergency department, primary care, and other health care settings. FINDINGS/CONCLUSIONS: Caregiver stress can lead to multiple negative outcomes including declines in physical health, increased mental health concerns, and overall decreased quality of life. Caregiver stress also leads to increased financial costs to the person, family, and health care systems, making it a public health issue. Recognizing caregiver stress is the initial step to identifying those in need of support and to providing quality care. Fortunately, caregiver stress can be prevented or reduced using a culturally competent multidimensional approach to addressing social determinants of health and unmet physical, psychological, and social/emotional needs of caregivers. IMPLICATIONS FOR CASE MANAGEMENT: Case management plays a critical role in assessing, educating, advocating, creating care plans, and advocating for both the caregiver and the care recipient.

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Caring for Family Members With Alzheimer’s and Burnout Syndrome: Impairment of the Health of Housewives

Being a housewife may already be a psychosocial risk factor leading to chronic stress and burnout, and this may be aggravated when the housewife must also become the caregiver of a family member with Alzheimer’s. The burnout syndrome and how it can affect general health and the presence of emotional disorders were studied in housewives who were family caregivers of an Alzheimer’s patient. The sample selected was made up of 193 housewives, 96 of whom were also caregivers for a family member with Alzheimer’s. Sociodemographic measures used were the Maslach Burnout Inventory and The General Health Questionnaire. Burnout was found in a significant percentage of participants. Emotional exhaustion, effect on general health, and presence of emotional disorders were higher in caregivers. Emotional exhaustion, general health, and anxiety were more influential, while depersonalization affected the appearance of depressive symptoms more. Being a caregiver and emotional exhaustion appeared to be the best predictors of emotional disorders. It was confirmed that emotional exhaustion influenced appearance of anxiety and depression equally in both groups. In the case of caregivers, an exhaustion-illness spiral was produced. In this group, emotional exhaustion seemed to become more severe as a consequence of the presence of chronic illnesses, and possibly influence the number of hours spent on care and having children living at home. Future research should analyze in greater depth and in a larger sample, the role of these variables and widen the focus of attention to personal variables that could be acting as protective factors and could be subject to intervention. The discussion concludes with some actions that should be included in prevention programs for the groups studied. 

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Investigating 'optimal time': perspectives on the timing of people living with dementia moving into care homes: research findings

This briefing summarises the findings of a study into whether there is a universal optimal time for people living with dementia to move to a care home. The research drew on the experiences of people living with dementia and family carers, as well as social workers and care home managers. It found that factors to consider include the wellbeing of the person living with dementia, the ability of family members to support them and the availability of suitable care home places.

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The cost of caring: out-of-pocket expenditures and financial hardship among Canadian carers

Many carers spend money out of their own pockets on the care-related needs of their family members or friends, and this spending may expose carers to a higher risk of financial hardship. Using data from a nationally representative sample of family carers drawn from Statistics Canada's 2012 General Social Survey on Caregiving and Care Receiving, we find that nearly one in five carers reports experiencing financial hardship. The results from multivariate logistic regression analysis show that care-related out-of-pocket expenditures are significant predictors of financial hardship. The results suggest establishing personal financial planning strategies and public policies to minimise the risk of incurring financial hardship due to care-related out-of-pocket expenditures.

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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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Caring Through COVID: Life in Lockdown

This report sets out the findings of a national survey undertaken by Family Carers Ireland between April 14th and May 5th 2020 which examined family carers’ experience of caring during the COVID-19 pandemic. The online survey was completed by 1,307 current family carers representing a range of caring situations – parents caring for children with a disability, those caring for an adult, carers of older people and those caring for multiple people. The survey was open to respondents 18 years and older. 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 1,307 carers. A family carer is someone who is providing an ongoing significant level of care to a person who is in need of that care in the home due to illness, disability or frailty.

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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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Vietnamese Adult-Child and Spousal Caregivers of Older Adults in Houston, Texas: Results from the Vietnamese Aging and Care Survey (VACS)

Vietnamese are the largest Asian ethnic group in Houston, Texas; however, research on this population is scarce. To address this dearth of knowledge, we developed the Vietnamese Aging and Care Survey. The objective of the study was to explore the sociodemographic and health characteristics of Vietnamese adults aged 65 years and older (n = 132) and their family caregivers (n = 64). Adult-child caregivers (n = 41) were aged between 21 and 65 years old. The majority were married, working, female, and in good to excellent health. Spousal caregivers (n = 23) were between 57 and 82 years old, retired, female, and in fair to good health. Adult children received more caregiving-related help from others compared to spousal caregivers; however, they felt more caregiver burden, had more perceived stress, and were in challenging relationships with care recipients. Differences in life stages of adult-child versus spousal caregivers may contribute to these results. Implications are discussed.

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Taking the strain? Impact of glaucoma on patients' informal caregivers

Purpose: To estimate informal caregiver (ICG) strain in people from a glaucoma clinic.; Methods: Patients with glaucoma were consecutively identified from a single clinic in England for a cross-sectional postal survey. The sample was deliberately enriched with a number of patients designated as having advanced glaucoma (visual field [VF] mean deviation worse than -12 dB in both eyes). Patients were asked to identify an ICG who recorded a Modified Caregiver Strain Index (MCSI), a validated 13 item instrument scored on a scale of 0-26. Previous research has indicated mean MCSI to be >10 in multiple sclerosis and Parkinson's disease. All participants gave a self-reported measure of general health (EQ5D).; Results: Responses from 105 patients (43% of those invited) were analysed; only 38 of the 105 named an ICG. Mean (95% confidence interval [CI]) MCSI was 2.4 (1.3, 3.6) and only three ICGs recorded a MCSI > 7. The percentage of patients with an ICG was much higher in patients with advanced VF loss (82%; 9/11) when compared with those with non-advanced VF loss (31%; 29/94; p = 0.001). Mean (standard deviation) MCSI was considerably inflated in the advanced patients (5.6 [4.9] vs 1.5 [2.2] for non-advanced; p = 0.040). Worsening VF and poorer self-reported general health (EQ5D) of the patient were associated with worsening MCSI.; Conclusion: ICG strain, as measured by MCSI, for patients with non-advanced glaucoma is negligible, compared with other chronic disease. ICG strain increases moderately with worsening VFs but this could be partly explained by worse general health in our sample of patients.

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Stress-related vulnerability and usefulness of healthcare education in Parkinson's disease: The perception of a group of family caregivers, a cross-sectional study

Parkinson's Disease is associated with a high assistive complexity, thus generating in caregivers a burden proportional to the intensity of the care provided. This study aims to evaluate whether the stress-related level of caregivers is related to their perception of the need for healthcare education. A cross-sectional study was conducted on 69 family caregivers that completed the Stress-related Vulnerability Scale (SVS scale) with a tool of proposed interventions stratified according to caregivers' need as “nothing”, “somewhat”, “moderately” and “extremely”. A direct association between the SVS scale and the perception of the usefulness of interventions was detected, and significant differences were observed for “Caregivers tele-support group” and “Peer-led support group” interventions, thus suggesting an important role for caregivers' emotional status in considering of training courses. Caregivers are split between low vulnerability, with minimal perception of training need, and high burden state with the acute necessity of support to manage patients.

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Severity of military traumatic brain injury influences caregiver health-related quality of life

Purpose/objective: To examine the influence of traumatic brain injury (TBI) severity on the health-related quality of life of caregivers providing care to service members/veterans (SMV) following a TBI. Research Method/Design: Thirty caregivers (90.0% female; 70.0% spouse; age: M = 39.5 years, SD = 10.7) of SMVs who sustained a mild, moderate, severe, or penetrating TBI were recruited from Walter Reed National Military Medical Center and via community outreach to participate in one of six focus groups. Caregivers were classified into 3 TBI severity/caregiver groups: (a) moderate/severe/penetrating TBI caregiver group (n = 11); (b) mild TBI caregiver group (n = 10); and (c) equivocal TBI caregiver group (n = 9). Thematic analysis using a constant comparative approach was conducted with qualitative analysis software to identify common themes across the 3 severity/caregiver groups.; Results: Eleven themes emerged: no time for self/needs last (83.3%), poor physical health (80.0%), increased stress/anxiety (76.7%), social isolation/loneliness (66.7%), lack of access to services (50.0%), impact on family life (46.7%), sleep issues (46.7%), finances/employment (36.7%), depression (30.0%), exhaustion (30.0%), and anger (16.7%). Exploratory pairwise comparisons revealed a higher proportion of the moderate/severe/penetrating TBI group endorsed 7 of the 11 themes (no time for self/needs last, increased stress/anxiety, impact on family life, sleep issues, finances/employment, exhaustion, anger, and increased stress/anxiety) compared with the other 2 groups.; Conclusions/implications: It is important that caregivers of SMVs receive long-term support in their caregiving and parenting roles. Further work is required to understand the challenges caregivers experience in accessing services they need and how to effectively meet their needs across the care continuum.

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Separation characterized by responsibility and guilt: Family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities

Aim and objectives: The aim of this study was to explore family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities. Background: Dementia not only affects individuals but also affects and changes the lives of close family members. An increasing number of dementia-related deaths occur in long-term care facilities; therefore, it is critical to understand how healthcare professionals support and care for residents with dementia and their families at the end of life. Design: A qualitative design with a phenomenological approach was adopted. Methods: In-depth interviews were performed with 10 family caregivers of residents in 3 Norwegian long-term care facilities. Results: The family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities were characterized by responsibility and guilt. Admission to a long-term care facility became a painful relief for the family caregivers due to their experiences with the poor quality of palliative care provided. The lack of meaningful activities and unsatisfactory pain relief enhanced the feelings of responsibility and guilt among the family caregivers. Despite the feelings of insecurity regarding the treatment and care given during the early phase of the stay, the family caregivers observed that their close family member received high-quality palliative care during the terminal phase. The family caregivers wanted to be involved in the care and treatment, but some felt that it became a heavy responsibility to participate in ethical decision-making concerning life-prolonging treatment. Conclusions: The family caregivers experienced ongoing responsibility for their close family members due to painful experiences with the poor quality of the palliative care provided. When their expectations regarding the quality of care were not met, the palliative care that was offered increased their feeling of guilt in an already high-pressure situation characterized by mistrust. 

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The Relationship Between Caregiver Reactions and Psychological Distress in Family Caregivers of Patients With Heart Failure

Background: Providing care often causes negative reactions and psychological distress in family caregivers of patients with heart failure. How these 2 constructs are related has not been fully explored.; Objective: The aims of this study were to describe caregiver reactions to caregiving and psychological distress and to determine the associations between caregiver reactions to caregiving and psychological distress in family caregivers of patients with heart failure.; Methods: In this secondary analysis of a cross-sectional study, the sample included 231 patients and their family caregivers. The Chinese version of the Hospital Anxiety and Depression Scale was used to assess psychological distress (ie, symptoms of anxiety and depression), and the Caregiver Reaction Assessment was used to measure both negative and positive caregiver reactions to caregiving, including financial problems, impact on schedule, health problems, lack of family support, and self-esteem.; Results: Of the participants, 15.2% and 25.5% of caregivers reported symptoms of depression and anxiety, respectively. Impact on schedule was the most common caregiver reaction, followed by financial problems. Impact on schedule was related to both the caregivers' symptoms of depression (odds ratio [OR], 1.705; P = .001) and anxiety (OR, 1.306; P = .035), whereas financial problems were only related to symptoms of anxiety (OR, 1.273; P = .011).; Conclusions: The findings suggest that interventions for reducing the negative impact on schedule of caregiving and helping to solve the caregivers' financial concerns might help to relieve their symptoms of depression and anxiety.

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Perceptions of Stress: Patient and Caregiver Experiences With Stressors During Hospitalization

Background: Hospitalization for a cancer diagnosis and treatment may trigger stressful experiences for patients and family caregivers.; Objectives: The purpose of this study was to identify patients' and caregivers' perceptions of stressors during hospitalization and evaluate their education needs.; Methods: A descriptive correlational research design was used to determine whether there is any correlation between the stress perceptions of patients and family caregivers and their need for additional education on health-related issues.; Findings: Patients reported experiencing mild to extreme stress for sleep deprivation, pain, tube and line restrictions, and financial issues. In addition to these stressors, family caregivers also perceived that waiting for test results was a main reason for stress in patients. A positive significant correlation was found between the total sample mean stress scores of patients and their need for additional education on health-related issues.

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Perceived stress and social support influence anxiety symptoms of Chinese family caregivers of community-dwelling older adults: a cross-sectional study

Aim: Chinese family members always take care of older adults because of obligations stemming from the culture of filial piety and the paucity of a long-term care system. These caregivers usually perceive high levels of stress that could compromise their psychological health and consequently result in anxiety impairments. This study aimed to assess the anxiety symptoms of Chinese family caregivers of older adults, explore factors associated with these symptoms, and provide theoretical evidence on improving their mental health.; Methods: A questionnaire survey was conducted face-to-face with caregivers of community-dwelling older adults. The survey asked about the demographic characteristics of the caregivers and older adults, objective caregiving loads, and social support and included the Zung Self-Rating Anxiety Scale and the Perceived Stress Scale.; Results: Anxiety symptoms were present in 43.1% of caregivers. The R2 changes indicated that the incremental variance explained by each block of variables was 9.8%, 5.0%, 0.7%, 17.6%, and 2.1% for demographic characteristics of caregivers, demographic characteristics of older adults, objective caregiving loads, perceived stress, and social support, respectively. Perceived stress was the strongest predictor of anxiety symptoms, and social support was positively associated with anxiety symptoms. Factors associated with caregivers' anxiety symptoms were having a chronic disease and living with older adults, as well as older adults' weight, hours of sleep, and education level.; Conclusion: Chinese family caregivers of older adults experienced higher levels of anxiety symptoms. Perceived stress could aggravate these symptoms, but social support might assist in alleviating anxiety symptoms from the stress of caregiving.

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Longitudinal changes on the quality of life in caregivers of type 2 diabetes amputee patients

Purpose: To explore changes in the quality of life of caregivers of amputees due to type 2 diabetes ten months after amputation.; Methods: This is a longitudinal study with three moments of evaluation (T1: one month after surgery, T2: 7 months, T3: 10 months). The sample comprised 110, 101, and 84 caregivers of amputated patients with type 2 diabetes. Caregivers answered a Socio-demographic questionnaire; the Self-Assessment Caregiver; the Family Disruption from Illness Scale; and the Short Form Health Survey (SF36).; Results: Stress levels were not significantly reflected in changes on mental quality of life over time, except in the caregivers who presented less stress, emphasizing the adverse role of stress when experienced on a continuous basis for ten months on the caregivers' mental well-being. Caregivers presented greater number of physical symptoms at T2 that decreased at T3.; Conclusions: According to the results, in order to promote caregivers' physical and mental quality of life, it would be important to evaluate stress levels especially in patients who presented somatic complaints.

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Health characteristics and outcomes of caregivers in the United States: An Analysis of the 2017 Health Information National Trends Survey (HINTS)

Background: Caregivers are essential for assisting people with disabilities to fully participate in their communities. Past research has primarily focused on family caregivers in the U.S. providing care to older adults rather than children and adults with disabilities.; Objective: This paper examines the demographic and health characteristics of caregivers of children and adults with disabilities across the lifespan using data from the 2017 Health Information National Trends Survey (HINTS).; Methods: Chi square, t-test, linear and logistic regression analyses show differences between caregivers and non-caregivers related to gender, age, employment, and specific health outcomes.; Results: Of 3285 respondents, 18% self-identified as caregivers of children or adults with disabilities (n = 546). Almost one-third of all caregivers reported being diagnosed with depression or an anxiety disorder as compared to one-fifth of non-caregivers. Psychological distress was associated with an increased risk for a diagnosis of depression/anxiety. We also found that distress decreased with age when controlling for other factors.; Conclusion: This paper increases knowledge of a growing segment of family caregivers providing care for members with disabilities across the lifespan. Research and policy needs are discussed.

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Female family carers' experiences of violent, abusive or harmful behaviour by the older person for whom they care: a case of epistemic injustice?

Family carers affected by violent, abusive or harmful behaviour by the older person for whom they care face social and epistemic challenges in developing and sharing knowledge about their experiences. These difficulties have contributed to a situation in which there is a paucity of evidence and public discourse about how we understand violence and harm instigated by people who have care needs or are 'vulnerable'. This paper reports the findings of a qualitative study that involved 12 in‐depth interviews with female carers affected by violence, abuse or harm. The study was informed theoretically by Miranda Fricker's concept of epistemic injustice which was used as a framework for analysis. There were two principal findings: (1) Carers were sensitive to anticipatory stigma and loss of moral autonomy. As a result, they self‐censured what they shared and, at times, were met with subtle but powerful processes of silencing. (2) Carers had limited linguistic and conceptual resources to explain the emotional and social aspects of the harm they experienced, exacerbated by implicit social norms about the 'private' and gendered nature of familial care. To conclude, we discuss the implications of these findings for sociological research and health and social care practice.

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Evaluating emotional distress and health-related quality of life in patients with heart failure and their family caregivers: Testing dyadic dynamics using the Actor-Partner Interdependence Model

Purpose: 1) To compare levels of emotional symptoms and health-related quality of life between patients with heart failure and their family caregivers; and 2) to examine whether patients' and caregivers' emotional symptoms were associated with their own, as well as their partner's health-related quality of life. Method: In this cross-sectional study, 41 patients-caregiver dyads (78% male patients, aged 68.6 years; and 83% female caregivers, aged 65.8 years) completed all nine dimensions of the Brief Symptom Inventory and the Minnesota Living with Heart failure Questionnaire. Dyadic data were analysed for 6 sub-scales of the Brief Symptom Inventory, using the Actor–Partner Interdependence Model. Results: There were no statistically significant differences in emotional symptoms and health-related quality of life between patients with heart failure and their caregivers. Patients' and caregivers' emotional symptoms were associated with their own health-related quality of life. Caregivers' anxiety, phobic anxiety, obsession-compulsion, depression and hostility negatively influenced their partner's (i.e. the patient's) health-related quality of life. There were no partner effects of patients' emotional symptoms on the health-related quality of life of caregivers. Conclusions: The results of this study suggest that patients may be particularly vulnerable to the emotional distress, i.e. thoughts, impulses and actions of their caregivers. It may be possible to improve patients' health-related quality of life by targeting specific detrimental emotional symptoms of caregivers. 

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Depression But Not Inflammatory Markers Are Increased in Family Versus Nonfamily Caregivers of Persons With Dementia

We investigated quality of life (WHOQoL-BREF), perceived stress (PSS-10), anxiety and depression (HADS-M), life satisfaction (SWLS), and serum levels of interleukin-6 (IL-6), C-reactive protein (CRP), and cortisol in family caregivers (n = 94) and professional caregivers (n = 48) of demented patients, as well as among noncaregivers (n = 30). Compared with professional caregivers, family caregivers had higher scores in HADS-M depression (P = .003) and anxiety (P = .033), lower life satisfaction (P = .04), and lower quality of life in psychological (P = .02) and social relationship (P = .03) domains. There were no differences in serum levels of IL-6, CRP, or cortisol between caregivers and control participants. In multivariable analysis, when family relationship was considered together with the time period of caregiving and results of the Mini-Mental State Examination test in care recipients (n = 118, 12.49 ± 7.99), only family relationship influenced scores in HADS-M depression (P = .004), SWLS scores (P = .011), and WHOQoL-BREF scores in psychological (P = .011) and social relationship (P = .008) domains. In conclusion, family caregivers are more stressed and have deeper depressive and anxiety disorders, lower life satisfaction, and lower quality of life than professional caregivers.

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A cross-sectional study of family caregiver burden and psychological distress linked to frailty and functional dependency of a relative with advanced dementia

Psychological health of caregivers of people with dementia is a major public concern. This study sought to determine the relationship between caregiver burden, psychological distress, frailty and functional dependency of a relative with advanced dementia. Persons with dementia and their caregivers (102 dyads) participated in this Portuguese community based cross-sectional study. Data were collected using the Clinical Dementia Rating Scale, a sociodemographic questionnaire, the Zarit Burden Interview, the Brief Symptoms Inventory and the Edmonton Frail Scale. Alzheimer's disease was the most common type of dementia among the recipients of care, who showed moderate (42.2%) to severe (52.9%) dementia. Among them 35.3% exhibited moderate and 45.1% severe frailty. Family caregivers reported moderate (76.5%) to severe burden (18.6%). Psychological distress was very high among family caregivers. Results show that people with dementia exhibited moderate (35.3%) or severe frailty (45.1%) and that a severe frailty was found in people with moderate dementia. A one-way ANOVA was conducted between the Global Severity Index and some sociodemographic variables. ANOVA reached p <.01 for employment status of the caregiver, assistance and professional support, and psychiatric history; and p = 0.01 for caregiver age and years of caregiving. Although caregivers reported benefit from the supportive approach offered by the multidisciplinary home care team, high levels of distress and associated burden were found, which might decrease their capacity to care for the person with dementia and their own health and well-being.

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Caregivers' resilience in mild and moderate Alzheimer's disease

Objectives: To investigate the resilience of caregivers of people with mild and moderate Alzheimer's disease (PwAD) and the related sociodemographic and clinical characteristics. Methods: Cross-sectional assessment of dyads of PwAD and family caregivers (N = 106). Caregivers were assessed for resilience, depression, anxiety, hopelessness, quality of life, burden and cognition. PwAD were assessed for severity of dementia, cognition, neuropsychiatric symptoms, functionality, quality of life and awareness of disease. Results: Most of the caregivers (51.1%) reported emotional problems (symptoms of anxiety, stress and depression). In both mild (p < 0.05) and moderate (p < 0.05) PwAD groups, resilience was inversely related to self-reported emotional problems. There was not a significant difference between caregivers of mild and moderate PwAD resilience (p < 0.05). Upon analyzing the factors related to resilience, we found some differences between the groups of caregivers of mild and moderate PwAD. Neuropsychiatric symptoms of PwAD (p < 0.05) and caregiver's depressive symptoms (p < 0.05) were related to resilience of caregivers of mild PwAD. In the moderate group, caregivers' higher levels of quality of life (p < 0.05) and co-residing with PwAD (p < 0.05) were related to resilience. Conclusion: Caregivers' resilience is driven by different factors according to disease severity. The findings suggest that resilience allows caregivers to manage and respond positively to stressful demands of care.

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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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Transitions to family caregiving: enrolling incident caregivers and matched non-caregiving controls from a population-based study

Background and Aim: Providing care to an older adult with a disability has been associated with increased risk to the caregiver's health, but most previous studies of caregiving and health compare persons who are already caregivers with poorly matched non-caregiving controls and are often based on convenience samples. In this report, we describe the enrollment of persons who transitioned into a family caregiving role while participating in a national epidemiological study.; Methods: Participants in the REasons for Geographic And Racial Differences in Stroke (REGARDS) study were asked on two occasions 9-14 years apart if they were providing care on an ongoing basis to a family member with a chronic illness or disability. Those who answered "no" and "yes", respectively, to this caregiving question and reported sufficient caregiving responsibilities after their transitions were enrolled in the present study as incident caregivers (N = 251). Participants matched on multiple demographic and health history variables and who reported no history of caregiving were enrolled as non-caregiving controls (N = 251).; Results: Among eligible participants, 84% agreed to participate, and 47% of caregivers reported caring for a person with dementia. Descriptive analyses confirmed the success of the matching procedures for balancing the groups on multiple demographic and pre-caregiving health variables. Depressive symptoms and perceived stress increased significantly after the transition to caregiving.; Conclusion: Comparable, population-based samples of incident caregivers and matched non-caregivers have been enrolled. Future analyses will examine within-person changes in health and circulating biomarkers as a function of the transition to caregiving.

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The three dimensions of caregiver grief in dementia caregiving: Validity and utility of the subscales of the Marwit-Meuser Caregiver Grief Inventory

Background: The experience of grief in family caregivers as they provide care for persons with dementia is often overlooked. The Marwit-Meuser-Caregiver-Grief-Inventory (MM-CGI) is one among the few scales that capture such experiences. In a recent study, MM-CGI was found to contain three subscales identifying dimensions of loss in caregivers - Personal-Sacrifice Burden (PSB), Heartfelt Sadness, Longing and Worry (HSLW), and Felt Isolation (FI). We aimed to evaluate the validity and utility of these dimensions in a multiethnic Asian population.; Methods: Family caregivers(n=394) completed MM-CGI and scales assessing caregiver burden, depression and gains. Internal-consistency reliability was examined using Cronbach's α, test-retest reliability using intraclass-correlation-coefficient, and construct validity using Pearson's correlation-coefficient. The utility of the MM-CGI dimensions was evaluated by comparing caregivers with high subscale scores across dementia stages and caregiving relationship.; Results: The three dimensions of MM-CGI exhibited adequate internal-consistency, test-retest reliability, construct validity, and known-group validity. PSB correlated most strongly with caregiver burden(r=0.78); HSLW with caregiver depression(r=0.75); and FI with caregiver burden and caregiver depression(r=0.60 respectively). Caregivers with high total grief scores tended to experience most difficulty with HSLW(90.8%), followed by PSB(75.4%) and FI(46.2%). The three dimensions also increased across the dementia stages, with FI higher in mild dementia, PSB higher in moderate dementia, and HSLW higher in severe dementia. Spousal caregivers experienced most difficulty in HSLW, whereas children caregivers experienced similar levels of difficulty across the dimensions.; Conclusions: The three dimensions of MM-CGI captured distinct aspects of caregiver grief in a multiethnic Asian population and would enable more individualized assessments and interventions for caregiver grief.

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Stress Management Intervention to Prevent Post-Intensive Care Syndrome-Family in Patients' Spouses

Background: Post-intensive care syndrome-family (PICS-F) refers to acute and chronic psychological effects of critical care on family members of patients in intensive care units (ICUs). Evidence suggests that increased distress during the ICU stay increases risk of PICS-F. Sensation Awareness Focused Training (SĀF-T) is a new, promising stress management intervention, but the feasibility of such training during the ICU stay for family caregivers who are acting as the surrogate decision-maker for patients who are undergoing mechanical ventilation is unknown.; Objectives: To assess feasibility and acceptability of SĀF-T to inform a future larger randomized controlled trial.; Methods: This randomized controlled trial of SĀF-T (n = 5) versus a control (n = 5) group was conducted at a level 1 trauma center. Participants assigned to SĀF-T completed 1 session daily for 3 days. Measures included enrollment rate, data completion rate, acceptability of SĀF-T, and symptoms of PICS-F. Scales used included Perceived Stress, Hospital Anxiety and Depression, Impact of Event, and National Institutes of Health Toolbox Emotion Battery.; Results: Mean age was 58 (SD, 12) years; 70% of participants were female. Predetermined feasibility criteria were met in enrollment rate (67%), outcome measures completion rate (> 90%), and SĀF-T acceptability (100% of doses completed during the ICU stay) without adverse events. Stress scores after SĀF-T were significantly lower than scores before SĀF-T (z = -3.5, P = .01).; Conclusions: SĀF-T intervention during the ICU stay is feasible, acceptable, and may improve family caregivers' post-ICU outcomes. Larger clinical trial to assess the effectiveness of SĀF-T in preventing PICS-F seem warranted.

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Psychosocial Support in Liver Transplantation: A Dyadic Study With Patients and Their Family Caregivers

Background and aims: Liver transplantation provides an opportunity of survival for patients with liver failure; however, this procedure is known to be psychologically and physically fatiguing for patients and their informal caregivers. The aim of this study was to investigate how perceived social support and the distribution of dependency were associated with the psychological wellbeing of patients waiting for liver transplantation and their caregivers, as a dyad. Methods: The present was a cross-sectional study. Ninety-five participants were recruited at a hospital in Northern Italy, during the psychological evaluation for inclusion in the transplantation list: 51 patients (19 with alcohol-related illness) and 44 family caregivers. Both patients and caregivers filled in a Symptom Checklist and Kelly's Dependency Grids. Patients also compiled the Medical Outcome Study Social-Support Survey, and caregivers compiled the Family Strain Questionnaire Short-Form. Results: Caregivers reported important levels of strain and strongly related to a worsening of their own and patients' symptoms. Patients with alcohol-related pathologies had a narrower social network, which corresponded to an increase in family strain. On the sample as a whole, regression analyses showed that perceived social support and dependency measures did not predict patients' and caregivers' symptoms. Nevertheless, cluster analysis identified a group of caregivers who distributed their dependency more and experienced lower levels of depression, anxiety, and strain. Conclusions: These results suggest the usefulness of a dyadic approach in the research, prevention, and care of liver diseases. A deeper comprehension of the functioning of dyads will help practitioners in the identification of situations at risk.

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Psychological burden in family caregivers of patients with advanced cancer at initiation of specialist inpatient palliative care

Background: This study prospectively evaluated distress, depressive and anxiety symptoms as well as associated factors in family caregivers (FC) of advanced cancer patients at initiation of specialist inpatient palliative care.; Methods: Within 72 h after the patient's first admission, FCs were asked to complete German versions of the Distress Thermometer, Generalized Anxiety Disorder 7-item scale (GAD-7), Patient Health Questionnaire depression module 9-item scale (PHQ-9) for outcome measure. Multivariate logistic regression analyses were used to identify associated factors.; Results: In 232 FCs (62% spouses/partners), mean level of distress was 7.9 (SD 1.8; range, 2-10) with 95% presenting clinically relevant distress levels. Most frequent problems were sadness (91%), sorrows (90%), anxiety (78%), exhaustion (77%) and sleep disturbances (73%). Prevalence rates of moderate to severe anxiety and depressive symptoms were 47 and 39%, respectively. Only 25% of FCs had used at least one source of support previously. In multivariate regression analysis, being female (OR 2.525), spouse/partner (OR 2.714), exhaustion (OR 10.267), and worse palliative care outcome ratings (OR 1.084) increased the likelihood for moderate to severe anxiety symptom levels. Being female (OR 3.302), low socio-economic status (OR 6.772), prior patient care other than home-based care (OR 0.399), exhaustion (OR 3.068), sleep disturbances (OR 4.183), and worse palliative care outcome ratings (OR 1.100) were associated with moderate to severe depressive symptom levels.; Conclusions: FCs of patients presenting with indication for specialist palliative care suffer from high distress and relevant depressive and anxiety symptoms, indicating the high need of psychological support not only for patients, but also their FCs. Several socio-demographic and care-related risk-factors influence mental burden of FCs and should be in professional caregivers' focus in daily clinical practice.

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Predictor Factors of Perceived Health in Family Caregivers of People Diagnosed with Mild or Moderate Alzheimer's Disease

Caring for a person diagnosed with Alzheimer's disease has a negative impact on family caregivers' psychological health. This study examined the factors related to 'perceived health' and 'presence of new-onset mental health problems' in family caregivers of people diagnosed with mild and moderate Alzheimer's disease. A cross-sectional observational study carried out in Almeria's Healthcare District (Spain). A total of 255 family caregivers (42.4% cared for people with mild Alzheimer's disease and 57.6% cared for people with moderate Alzheimer's disease) participated in the study from January to December 2015. Mainly, caregivers were women (81.5% in the mild Alzheimer's disease group and 88.4% in the moderate Alzheimer's disease group), and their average age was 56.54 years (standard deviation (SD) = 13.13) and 54.47 years (SD = 11.71), respectively. Around 47% of the caregivers had been caring for the person with Alzheimer's between two and five years. The Goldberg General Health Questionnaire was used to measure perceived health and the presence of new-onset mental health problems. An exploratory descriptive analysis and a multivariate logistic regression analysis were conducted. For caregivers of people with mild Alzheimer's disease, 'perceived health' was related to 'perceived social support' (r = -0.21; p = 0.028), 'person's level of dependency' (r = -0.24, p = 0.05), 'severity of the person's neuropsychiatric symptoms' (r = 0.22; p = 0.05), and 'caregiver's emotional distress in response to the person's neuropsychiatric symptoms' (r = 0.22; p = 0.05). For caregivers of people with moderate Alzheimer's disease, 'perceived health' was related to 'perceived social support' (r = -0.31; p ˂ 0.01), 'presence of neuropsychiatric symptoms' (r = 0.27, p = 0.01), 'severity of the person's neuropsychiatric symptoms' (r = 0.32, p = 0.01) and 'caregiver's emotional distress in response to the person's neuropsychiatric symptoms' (r = 0.029; p = 0.01). The presence of new-onset mental health problems was detected in 46.3% (n = 50) of caregivers of people with mild Alzheimer's and 61.9% (n = 91) of caregivers of people with moderate Alzheimer's. When people are diagnosed with mild Alzheimer's disease, intervention programs for caregivers should aim to regulate emotions and promote positive coping strategies. When people are diagnosed with moderate Alzheimer's disease, intervention programs for caregivers must allow them to adapt to caregiving demands that arise with the progression of Alzheimer's disease.

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The Modified Caregiver Strain Index: Portuguese version

The Modified Caregiver Strain Index is a widely used tool to screen for caregiver strain in family caregivers. This study presents the Portuguese version of the Modified Caregiver Strain Index and explores its psychometric properties in a sample of 347 informal caregivers of older dependent individuals. Factor analysis revealed a two-factor structure and indicated satisfactory internal consistency. Criterion-related validity was supported by positive significant correlations with the emotional health of the caregiver (psychological distress). The findings show evidence of reliability and validity of the Portuguese version of the Modified Caregiver Strain Index encouraging its use in clinical and research fields.

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The moderating role of age in the relationship between different stressors and the quality of life of the relatives of people with intellectual disabilities

Purpose: The level of support needed for adaptive functioning and behavioral problems of individuals with intellectual disabilities (ID) can be a source of stress for caregivers. The aim of this study was to explore the moderating role of caregivers' age on the associations between these stressors and quality of life (QoL) of the family caregivers. As these sources of stress in people with ID can coexist, the triple interaction between stressors and age was also examined. Methods: 208 relatives (mean age = 50.98 years, SD = 12.86) of people with ID participated in the research. Participants answered a questionnaire with sociodemographic variables, measures of stressors (level of support for adaptive functioning of the people with ID and behavioral problems) and measures of QoL (WHOQOL-BREF). Results: The association between the level of support needed for adaptive functioning and lower QoL was only significant among older relatives, whereas the association between behavioral problems and lower QoL was only significant among younger relatives. A three-way interaction between behavioral problems, level of support needed, and age indicated that the association between the level of support for adaptive functioning and QoL in older relatives was greater when there were higher levels of behavioral problems. Conclusions: The role of caregivers' age in their QoL differs depending on the nature of the stressor, and an accumulation of stressors can have a particularly negative impact on older caregivers. Interventions should be adapted for caregivers of different ages and take into account the particular sources of stress they have to cope with. 

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Medical Comorbidities of Dementia: Links to Caregivers' Emotional Difficulties and Gains

Objectives: To evaluate how eight major medical comorbidities of dementia (arthritis, cancer, diabetes, heart disease, hypertension, lung disease, osteoporosis, and stroke) are associated with caregivers' perceptions of emotional caregiving difficulties and caregiving gains (ie, benefits or rewards from the care role).; Design: Nationally representative cross-sectional surveys of community-dwelling persons living with dementia (PLWDs) and their co-resident family caregivers in the United States.; Setting: The 2011 National Health and Aging Trends Study and National Study of Caregiving.; Participants: Total of 356 co-resident family caregivers of community-dwelling PLWDs.; Measurements: Caregivers' sociodemographic and health characteristics, caregiving stressors, emotional caregiving difficulties, caregiving gains, and chronic health conditions of PLWDs.; Results: Caregivers most commonly cared for a PLWD with arthritis (65.5%), followed by hypertension (64.9%), diabetes (30.1%), stroke (28.8%), osteoporosis (27.1%), heart disease (23.3%), cancer (21.5%), and lung disease (17.2%). Logistic regressions revealed that caregivers were 2.63 and 2.32 times more likely to report higher than median emotional caregiving difficulties when PLWDs had diagnoses of diabetes and osteoporosis, respectively, controlling for caregiver sex, relationship to the PLWD (spouse vs non-spouse), educational attainment, self-rated health, and assistance with activities of daily living and medical care activities. Caregivers were also 2.10 times more likely to report lower than median caregiving gains when PLWDs had a diagnosis of osteoporosis.; Conclusion: Comorbid health conditions among PLWDs have distinct implications for caregiving outcomes. Clinical care and interventions to improve the well-being of both care dyad members should support caregivers in managing medical comorbidities of dementia.

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Longitudinal dyadic interdependence in psychological distress among Latinas with breast cancer and their caregivers

Purpose: Cancer diagnosis and treatment can generate substantial distress for both survivors and their family caregivers. The primary aim of this investigation is to test a model of dyadic interdependence in distress experienced by cancer survivors and their caregivers to determine if each influences the other.; Methods: To test this prediction, 209 Latinas with breast cancer and their family caregivers (dyads) were followed for 4 waves of assessment over the course of 6 months. Both psychological (depression, anxiety, perceived stress) and physical (number of symptoms, symptom distress) indicators of distress were assessed. Longitudinal analyses of dyadic data were performed in accordance with the actor-partner interdependence model.; Results: Findings indicated that psychological distress was interdependent between cancer survivors and their caregivers over the 6 months of observation. However, there was no such evidence of interdependence on indicators of physical distress.; Conclusions: These findings are consistent with emotional contagion processes and point to the potential importance of caregiver well-being for the welfare of Latina breast cancer survivors.

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Is Family Caregiving Associated With Inflammation or Compromised Immunity? A Meta-Analysis

Background and Objectives Family caregiving stress has been widely reported to have negative effects on circulating biomarkers of immune system function and inflammation. Our goals were to systematically review this literature and conduct a meta-analysis on the extracted effects. Research Design and Methods A systematic search of published studies comparing caregivers and noncaregivers on biomarkers measured from blood samples was conducted in the PubMed, Embase, and Cochrane databases. This search identified 2,582 articles and abstracts. After removing duplicative papers and studies not meeting inclusion criteria, 30 articles were identified that reported analyses on 86 relevant biomarkers from 1,848 caregivers and 3,640 noncaregivers. Results Random-effects models revealed an overall effect size across all biomarkers of 0.164 SD units (d). A slightly larger overall effect (d = 0.188) was found for dementia caregivers only. Immune system comparisons yielded somewhat larger differences than inflammation comparisons. Most studies used small convenience samples, and effect sizes were larger for studies with moderate or high bias ratings than for studies with low bias ratings. No significant associations were found in studies that used population-based samples. Discussion and Implications Caregivers had small but significantly reduced immune system functioning and greater inflammation than noncaregivers, but associations were generally weak and of questionable clinical significance. The absence of clear associations from low bias studies and population-based studies underscores concerns with possible selection biases in many of the convenience samples. Population-based studies that assess biomarkers before and after the onset of caregiving might add much clarity to this literature. 

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Interrelatedness of Distress Among Chinese-Speaking Patients and Family Caregivers

Background: Cancer is a family disease, affecting the individual patient and the family. For Chinese patients and their families in Canada, adjusting to cancer may be particularly distressing when culture and language are not congruent with the mainstream model of care delivery. Objective: In view of the limited research on the cancer experience of Chinese families, this study aims to examine the interrelatedness of patients and family caregivers' distress among a Chinese-speaking cancer population in Canada. Methods: Semi-structured interviews were conducted with a purposive sample of 10 Chinese-speaking cancer patients and 6 family caregivers. Qualitative analysis of the interview data was conducted to construct cross-cutting themes regarding the experiences of distress after a cancer diagnosis. Results: Four overarching themes emerged from the analysis: (1) misconception about cancer, (2) tensions in disclosure, (3) patient and family caregiver distress, and (4) concealing emotion in patient and family caregiver. Notably, the interrelatedness of patients and family caregivers' distress was highlighted, as patients and family caregivers both sought to regulate their own emotions to protect one another's mental well-being. Conclusion: The study provides insights into the distress of living with cancer and the impact on family relationships. Understanding the patients and family members' cultural and social contexts also provides the foundation for patient- and family-centered care. Implications for Practice: Healthcare professionals can provide culturally appropriate care by recognizing the needs, values, and beliefs of cancer patients and their families. Furthermore, the patient–family-caregiver dyad needs to be considered as the unit of care.

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Financial Strain, Employment, and Role Captivity and Overload Over Time Among Dementia Family Caregivers

Background and Objectives This study examined how financial strain and changes in employment status affect subjective stressors over 12 months in 184 family caregivers of individuals with dementia. Research Design and Methods Subjective stressors of role overload and role captivity, and employment status were measured at baseline, 6-, and 12-months. Self-reports on financial strain were measured at baseline only. Caregivers were categorized into 3 groups based on changes in their employment status during the study over 12 months: (a) who were never employed, (b) who experienced some sort of employment status change, either going from employment to unemployment or vice versa, and (c) who were always employed. Growth curve analyses were conducted to examine within-person changes in role overload and role captivity, and associations with employment and financial strain. Results Caregivers with greater financial strain at baseline had higher levels of role overload and increasing role captivity over time. Caregivers who experienced a caregiving transition and had low financial strain at baseline showed greater decrease in role captivity over 12 months. Although caregivers who were consistently unemployed reported lower levels of role overload, they also showed steeper increase over time than those who were consistently employed. Discussion and Implications Caregivers' perceptions of financial strain add to the long-term stress of the caregiving role. Changes in caregivers' employment status may have complex associations with their feelings of stress over time. 

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Depression and Anxiety Among Partner and Offspring Carers of People With Dementia: A Systematic Review

Background and Objectives Family carers of people with dementia (PWD) experience high rates of depression and anxiety. However, the factors that are associated with these mental health concerns among family carers are not well understood. The purpose of this review was to identify factors that are associated with depression and anxiety in family carers of PWD. Research Design and Methods A systematic review was conducted of studies that examined depressive or anxiety symptoms among family caregivers of community-dwelling older adults with dementia. Twenty-six studies met inclusion criteria and were included in the review. Results Depressive and anxiety symptoms were related to demographic factors, dementia characteristics, carer psychological and social factors, and dyadic relationship factors. Some prominent factors were consistently associated with depressive symptoms across studies. Female carers and adult–child carers, rather than spousal carers, were more likely to experience depressive symptoms. Carers' coping strategies and activity restriction were also found to be strongly related to depressive symptoms. Severity of dementia-related problematic behaviors was related to carers' depression and anxiety symptoms. In addition, relationship type and quality were important factors associated with depressive symptoms. Discussion and Implications Several important risk factors for carer depression were highlighted in this review. However, a lack of measurement precision and a reliance on cross-sectional studies limits our understanding of exactly how depression and anxiety progress during the caregiving experience. The implications for prevention and intervention programs for depression and anxiety are discussed, as well as suggestions for future research to improve the quality of research in this area. 

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Dementia and Firearms: an Exploratory Survey of Caregiver Needs

We conducted an anonymous internet survey with a convenience sample of family members, friends, or other caregivers (hereafter referred to as "caregivers") of PWD (2/2018-10/2018). As expected, driving and home safety concerns were nearly universal, but concern about firearms was also common: half of caregivers identified firearm safety as an issue to address and a quarter of PWD were reported to live in a home with firearms. [Extracted from the article]

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Caring ability, burden, stress and coping of family caregivers of people in cancer treatment

Objective: To analyze the association between the caring ability and the burden, stress and coping of family caregivers of people in cancer treatment. Method: A crosssectional study with 132 family caregivers. The following instruments were applied: a characterization instrument, the Caring Ability Inventory, the Zarit Burden Interview, the Perceived Stress Scale, and the Brief COPE. The Spearman Correlation was used with significance <5%. Results: There were significant and positive correlations between total caring ability and: burden - interpersonal relationship (p=0.03); stress (p=0.02) and maladaptive coping (p=0.00); and inversely proportional correlations with problem-focused coping (p=0.03). The courage had inversely proportional correlation with: self-efficacy (p=0.03), interpersonal relationship (p=0.00), stress (p=0.04) and maladaptive coping (p=0.00). The knowledge had significant and positive correlation with problem-focused coping (p=0.00), adaptive coping (p=0.01), and inverse correlation with stress (p=0.02). Conclusion: The level of caring ability correlates with levels of stress and burden, and with the type of coping strategy used by family caregivers.

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Caregiving for older adults requiring hemodialysis: A comparison study

This study examined differences in caregiving appraisal between primary family caregivers of disabled older adults receiving hemodialysis (PFCGs-wHD) and disabled older adults not receiving dialysis (PFCGs-woD). A total of 242 PFCGs -wHD and 335 PFCGs-woD were included in the analyses. We used adjustment by propensity score to control for bias by confounding factors. Caregiving appraisal was measured in terms of role strain, emotional exhaustion, and caregiving satisfaction. On the first task, PFCGs-wHD demonstrated significantly worse levels on all three appraisal indicators than did PFCGs-woD. On the second task, only higher emotional exhaustion was significantly mediated by higher role strain in PFCGs-wHD. Further, PFCGs-wHD status directly influenced lower caregiving satisfaction without mediation by higher role strain. Caregiving for disabled older adults receiving HD may be associated with significant challenges for caregivers. 

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Caregivers' interactions with health care services – Mediator of stress or added strain? Experiences and perceptions of informal caregivers of people with dementia – A qualitative study

Background: There are an estimated 46.8 million people worldwide living with dementia in 2015, being cared for usually by family members or friends (informal caregivers). The challenges faced by informal caregivers often lead to increased levels of stress, burden and risk of care-recipient institutionalisation. Aim: The overarching aim of this study was to explore the experiences and perceptions of informal caregivers of people with dementia when interacting with the health care system, and whether the support received acted as a mediator of caregiver stress. The secondary aim was to investigate healthcare professionals' views and current practice regarding people with dementia and their interactions with informal caregivers. Method: We employed a qualitative research design, using focus groups and one face-to-face interview with a purposive sample of informal caregivers and healthcare professionals in Lincolnshire, UK. Data were collected between March and July 2015. We used the stress-process model of stress in caregivers as a theoretical framework. Results: We interviewed 18 caregivers and 17 healthcare professionals. Five themes, mapped to the stress-process in caregivers' model, captured the main challenges faced by caregivers and the type of support they wanted from health care services. Primary stressors included the challenge of diagnosing dementia; caregivers' needs and expectations of an in-depth knowledge and understanding of dementia from healthcare professionals; and need for carer education. Secondary role strain included lack of support and mismatch of communication and expectations. Caregiver involvement in monitoring care and disease was a potential mediator tool. Conclusions: Fragmentation of dementia care services, lack of training for healthcare professionals and the dearth of information for caregivers means health care services are only partially fulfilling a support role. In turn, lack of support may be intensifying caregiver stress leading to worsening in their health and well-being; thus, potentially increasing the risk of institutionalisation of their care-recipient.

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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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Caregiver burden and stress in psychiatric hospital admission

Objective: to evaluate the relation between sociodemographics factors, stress and burden of care of family caregivers of patients at a psychiatric hospital admission.; Method: quantitative study, with a cross-sectional correlation design. A total of 112 family caregivers participated, older than 18, in a Brazilian psychiatric hospital. A sociodemographic questionnaire was used to collect data, the Zarit Burden Interview and LIPP Adult Stress Symptom Inventory.; Results: burden of care in family caregivers at a psychiatric hospital admission was significantly associated with stress (p=0.000). The psychological symptoms of stress predicted severe burden. Most caregivers presented a moderate or severe burden, with 52.7% in the resistance phase of stress; 66.1% presented psychological symptoms.; Conclusion: results show the alarming situation of caregivers of patients from a psychiatric hospital, evidencing their own vulnerability to illness. Indeed, the during admission in a psychiatric hospital, not only patients need care, but also their caregivers.

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Burden in caregivers of adults with epilepsy in Asian families

Purpose: The literature on caregiver burden tends to focus on children and teenagers with epilepsy and less on adults. As caregiving is a dynamic, complex process across the trajectories, this study aims to examine the factors associated with caregiving burden in those caring for adults with epilepsy.; Method: This is a cross-sectional, survey-based study in which participants responded to questionnaires regarding perceived burden (ZBI), quality of life (IEQoL), psychological distress (DASS-21), family functioning (FAD) and perceived social support (MSPSS). Additional measures include socio-demographics and clinical characteristics of the care-recipient.; Results: A total of 111 caregivers participated, of whom 72.1% were females, 55% parents, 59.5% Chinese, 51.4% unemployed and 46.0% with tertiary education. Approximately half (42.3%) reported mild-to-moderate levels of burden (mean ZBI score 29.93, SD 16.09). Furthermore, multiple regression analysis identified10 predictors of caregiver burden, namely family functioning, weekly caregiving hours, number of caregivers per family, attitude towards epilepsy, family support, caregivers' gender, personal income and as well as care-recipients' age of onset, seizure frequency and ADL dependency (F(10, 85) = 11.37, p < 0.001). Stepwise regression highlighted family functioning as the main predictor (β = 0.299, p < 0.001). The total ZBI score was positively correlated with caregivers' reported levels of depression (r = 0.549, p < 0.001), anxiety (r = 0.599, p < 0.001) and stress (r = 0.576, p < 0.001) subscales in DASS-21, and negatively correlated with IEQoL (r=-0.637, p < 0.001).; Conclusion: This study shows that caregivers' burden is highly associated with the family system (family functioning, support and number of caregivers), besides demographics, psychosocial and clinical characteristics. Future research is required to learn how to support this sub-group of caregivers within the family system.

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The association between specific neuropsychiatric disturbances in people with Alzheimer's disease and dementia with Lewy bodies and carer distress

Objective: Neuropsychiatric symptoms (NPSs) are identified as important care-recipient variables in terms of the impact on carer distress. The aim of this study was to determine whether specific neuropsychiatric disturbances in people with Alzheimer disease (AD) and dementia with Lewy bodies (DLB) differentially impact carer distress. Methods: This was a cross-sectional study of people diagnosed with AD and DLB and their primary carers. The Relatives' Stress Scale (RSS) was used to assess the level of reported distress in carers, and the Neuropsychiatric Inventory (NPI) was used to assess NPSs. The effect of NPSs on carer distress was analyzed using correlation analysis and partial least squares regression. Results: This study included 159 participants diagnosed with AD (n = 97) and DLB (n = 62) and their primary carers (spouses and adult children). The majority of people diagnosed with dementia were women (64.2%), with a mean age of 75.9 years (SD, 7.4) and a mean Mini-Mental State Examination (MMSE) score of 23.5 (SD, 2.9). The main analysis identified apathy as the most important NPS contributing to carer distress. Compared with AD, the explained variance in the DLB group was higher (r2  = 37.3 vs r2  = 53.7). In addition, more NPSs were considered clinically important in the DLB group. Conclusion: The findings of this study identify apathy as the most important NPS contributing to carer distress among carers of people with AD and DLB. These findings help us identify the support needs of families dealing with dementia. 

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A Review of the Complex Role of Family Caregivers as Health Team Members and Second-Order Patients

In Palliative Care, the unit of care is the patient and their family. Although members of the health care team often address the family caregiver's opinions and concerns, the focus of care remains on the needs of the patient. The readiness and willingness of the family caregiver is often overlooked as they are expected to assume a complex caregiving role. When family caregivers are not intellectually or emotionally prepared or physically capable, the caregiver is at high risk for serious health issues and cognitive, emotional, and physical decline particularly as caregiving extends over time. Family caregivers are often a neglected and at-risk population. Illustrated through the use of a case study, this article addresses the complex role of family caregivers, as both health team members and second-order patients. It emphasizes the importance of family assessment and interventions to balance the burdens and benefits of family caregiving and protect caregivers' health and well-being.

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Caregiver influences on 'living well' for people with dementia: Findings from the IDEAL study

Objectives: The capability to 'live well' in people with dementia can be influenced by many factors, including those related to the experiences of their informal caregiver. How caregivers experience their own role can affect not only their well-being but also the way they provide care and hence the experience of the person with dementia. The aim of this study is to identify the potential impact of the caregiver's perception of the caregiving experience on how people with mild to moderate dementia self-rate their QoL, well-being and satisfaction with life. Method: This study utilised time-point 1 data from 1283 informal caregiver and the 1283 people with dementia whom they provide care from the IDEAL cohort study. Multivariate modelling was used to investigate the associations between measures related to the caregiver's perception of the caregiving experience (caregiving stress, perceived social restrictions, caregiving competence, positive aspects of caregiving, and coping) and the self-ratings of QoL, satisfaction with life, and well-being by the person with dementia. Results: Lower QoL ratings by the person with dementia were associated with high caregiver stress (-1.98; 95% CI: -2.89, -1.07), high perceived social restrictions (-2.04; 95% CI: -2.94, -1.14) and low caregiving competence (-2.01; 95% CI: -2.95, -1.06). Similar associations were found for satisfaction with life and wellbeing. Positive aspects of caregiving and coping were not associated with outcomes for the person with dementia. Conclusion: The findings indicate that how the caregiver experiences caregiving can affect the person with dementia. This finding reinforces the importance of providing support to caregivers.

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Informal Caregiver Burnout? Development of a Theoretical Framework to Understand the Impact of Caregiving

Informal caregiving is a rewarding but demanding role. The present theoretical framework proposes to adapt the tridimensional concept of burnout to informal caregiving as a way to address the potential consequences of caregiving. This adaptation reflects caregivers' reported difficulties, as well as empirical findings on emotional exhaustion, depersonalization, and personal accomplishment as caregiving outcomes. But to understand burnout in informal caregiving contexts, it is also necessary to find ways to model it. The Informal Caregiving Integrative Model (ICIM) is thus proposed. This model is based on the integration of elements from literature on both informal caregiving stress and professional burnout. The goal of the ICIM is to emphasize the importance of every category of determinants of informal caregiver burnout (i.e., relating to the caregiver, the caregiving setting, and the sociocultural context), with a key mediating role for the caregivers' appraisal of their situation and their relationship with the care-recipient. This article is a first integrative step in the consideration of a form of burnout specific to informal caregivers and supports the design of empirical and interventional studies based on the theoretical foundation that the ICIM proposes.

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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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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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Older adult caregivers of their spouses with acquired late-life disability: examining the effectiveness of an internet-based meditation program in mitigating stress and promoting wellbeing

This article reports a study examining the impact of an internet-based meditation program in mitigating stress and promoting wellbeing among older adult caregivers of their spouses with acquired late-life disability in Central Europe and South Asia compared to leisure. Posttest (T2) the meditation cohort exhibited lower caregiver burden and psychological distress, improved responses to care challenges, and greater wellbeing compared to the leisure group. South Asians, women, middle class, college educated, whose spouses had locomotor and sensory disabilities and lived as a couple alone, reported lesser caregiving burden, improved responses to care challenges, lesser distress and greater wellbeing at T2. Meditation lessons attended and self-practice mediated the relationship between demographic predictors and outcomes and self-practice had the largest positive impact. Meditation influenced certain aspects of caregiver wellbeing more such as self-care and certain specific aspects of wellbeing. Internet-based caregiver interventions are evidence as useful for social work with older caregivers.

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Web-based interventions to improve mental health in home caregivers of people with dementia: Meta-analysis

Background: Dementia is a major cause of disability and dependency in older adults worldwide. It is often accompanied by general psychological distress, such as depression and anxiety symptoms, among caregivers of people with dementia (PwD). The physical and mental health of the caregiver is a prerequisite and a promise to help PwD continue to live as long and as well as possible. Web-based interventions can provide convenient and efficient support and an education tool to potentially reduce the negative outcomes associated with providing care. Objective: The aim of this study was to examine the effect of internet-based interventions on the mental health outcomes of family caregivers of PwD and to explore which components of the Web-based interventions play an important role. Methods: A comprehensive literature search was conducted in PubMed, Excerpta Medica dataBASE, PsycINFO, Cochrane Database, and the Cumulative Index to Nursing and Allied Health Literature using relevant terms such as Web-based and caregiver as keywords, covering all studies published before June 2018. A total of 2 reviewers independently reviewed all published abstracts, according to established inclusion and exclusion criteria. We extracted information about the participants, interventions, and results and reviewed article quality in terms of the randomized trial methods, using the approach recommended by the Cochrane Handbook for Systematic Reviews of Interventions. Results: A total of 815 caregivers participated in 6 studies, with 4 of the studies using depression as an outcome. The analysis found that depression scores dropped an average of 0.23 (95% CI -0.38 to -0.07; P<.01) after Web-based interventions. In 2 studies of caregivers who were experiencing anxiety symptoms, the average score for anxiety dropped by 0.32 points (95% CI -0.50 to -0.14; P<.01). However, in terms of coping, pain, and stress, the Web-based interventions showed a poor effect. On the whole, the addition of professional psychological support on the basis of education can improve caregivers' mental health. Conclusions: Internet-based interventions were generally effective at reducing anxiety and depression in dementia caregivers, although negative results were found in some studies. As for burden and stress, further research is required. 

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Psychosocial Issues and Bereavement

Patients with serious illness and their family caregivers face numerous ongoing psychological and social concerns and stressors throughout the disease trajectory. Common challenges relate to the need to manage the disease by making complex and often difficult medical decisions. In addition, the presence of psychological and psychiatric distress, including depression and anxiety, may significantly add to the overall symptom burden for the patient and family caregivers. These challenges negatively impact mood, cognitive function, interpersonal relationships, and medical decision making. If not recognized and adequately addressed, they can seriously undermine coping and resilience, eroding psychological well-being and quality of life. 

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Caregiver Interventions for Adults Discharged from the Hospital: Systematic Review and Meta-Analysis

OBJECTIVES: To review the evidence evaluating the effectiveness of informal caregiver interventions to facilitate the recovery of older people discharged from the hospital. DESIGN: Systematic review and meta-analysis. SETTING: Hospital and community. METHODS: Published and unpublished randomized and nonrandomized controlled trials assessing the effectiveness of informal caregiver interventions to support the recovery of older people discharged from the hospital were identified (to March 2019). The primary outcome was patient health-related quality of life (HRQOL). Secondary outcomes included patient function, caregiver burden, caregiver HRQOL, psychological distress, adverse events, and health resource use. Studies were critically appraised and meta-analyzed. PARTICIPANTS: Adults who had been admitted to the hospital. RESULTS: A total of 23 studies were eligible (4695 participants). The indication for hospital admission was stroke in 21 trials (91%). Interventions consisted of training and/or skills-based programs, with or without home visits/telephone follow-up. Caregiver interventions for patients following stroke may provide no benefit for patient HRQOL at 12 months (standardized mean difference =.29; 95% confidence interval = -.12 to.69; low-quality evidence). Caregiver interventions demonstrated benefit for caregiver burden and both patient and caregiver anxiety at 12 months. No consistent effect was found on functional outcomes, depression, HRQOL, adverse events, or health resource use measures. CONCLUSIONS: Informal caregivers who receive training to facilitate the recovery of older people discharged from the hospital following stroke may have a lower burden and reduced anxiety at 12 months compared with those who do not. However, the evidence was moderate to low quality. Further study is warranted to explore whether caregiver interventions can be modified for nonstroke populations such as those with hip fracture. 

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Pre-surgical Caregiver Burden and Anxiety Are Associated with Post-Surgery Cortisol over the Day in Caregivers of Coronary Artery Bypass Graft Surgery Patients

Background: The relationship between pre-surgical distress and diurnal cortisol following surgery has not been investigated prospectively in caregivers of coronary artery bypass graft (CABG) patients before. We aimed to examine the relationship between pre-surgical anxiety and caregiver burden and diurnal cortisol measured 2 months after the surgery in the caregivers of CABG patients. Method: We used a sample of 103 caregivers of elective CABG patients that were assessed 28.86 days before and 60.94 days after patients’ surgery. Anxiety and caregiver burden were assessed using the anxiety subscale of the Hospital Anxiety and Depression Scale and the Oberst Burden Scale respectively. Saliva samples were collected to measure cortisol area under the curve with respect to ground (AUCg) and diurnal cortisol slope. Anxiety and caregiver burden were entered into linear regression models simultaneously. Results: While high levels of pre-surgical anxiety were positively associated with increased follow-up levels of AUCg (β = 0.30, p = 0.001), greater pre-surgery perceived burden score was associated with steeper cortisol slope (β = 0.27, p = 0.017) after controlling for a wide range of covariates. Conclusion: These outcomes support the utility of psychological interventions aimed to increase the awareness of caregiving tasks and demands in informal caregivers. 

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Influence of Positive and Negative Dimensions of Dementia Caregiving on Caregiver Well-Being and Satisfaction With Life: Findings From the IDEAL Study

Objective: The aim of this study was to identify the potential impact of positive and negative dimensions of caregiving on caregiver well-being and satisfaction with life (SwL). Methods: This study used time-point one data from the Improving the experience of Dementia and Enhancing Active Life (also known as IDEAL)cohort study that involved 1,283 informal caregivers of people in the mild-to-moderate stages of dementia recruited from 29 sites within Great Britain. Multivariate linear regression modeling was used to investigate the associations between positive dimensions of caregiving (measured by caregiving competence and perceptions of positive aspects of caregiving), negative dimensions of caregiving (measured by caregiving stress and role captivity), and caregiver well-being and SwL. Results: Lower well-being was associated with low caregiving competence (–13.77; 95% confidence interval [CI]:–16.67, –10.87), perceiving fewer positive aspects of caregiving (–7.67; 95% CI:–10.26, –5.07), high caregiving stress (–24.45; 95% CI:–26.94, –21.96), and high role captivity (–15.61; 95% CI:–18.33, –12.89). Lower SwL was associated with low caregiving competence (–4.61; 95% CI:–5.57, –3.66), perceiving fewer positive aspects of caregiving (–3.09; 95% CI:–3.94, –2.25), high caregiving stress (–7.88; 95% CI:–8.71, –7.06), and high role captivity (–6.41; 95% CI:–7.27, –5.54). When these four measures were combined within the same model, only positive aspects of caregiving and caregiving stress retained independent associations with well-being and SwL. Conclusion: Both positive and negative dimensions of caregiving were associated with caregiver well-being and SwL. Psychological therapies and interventions need to consider not only the negative aspects of caregiving but also positive caregiving experiences and their implications for caregiver well-being and SwL. 

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Coping and anxiety in caregivers of dependent older adult relatives

The aim of this study was to analyze the relationship between coping and anxiety in caregivers of dependent older adult relatives. A cross-sectional study was carried out in the province of Jaén (Andalusia, Spain). The convenience sample consisted of 198 family caregivers of dependent older adults. The main measurements were anxiety (Hamilton scale), coping (Brief COPE), subjective burden (Caregiver Strain Index), objective burden and sex of the caregiver. The main analyses were bivariate analysis using the Pearson correlation coefficient, and multivariate analysis using multiple linear regression. An independent regression model was developed for anxiety and each type of coping, adjusting for sex, subjective burden and objective burden. Our results demonstrate that anxiety was negatively associated with planning (partial r = -0.18), acceptance (partial r = -0.22) and humor (partial r = -0.20), and it was positively associated with self-distraction (partial r = 0.19), venting (partial r = 0.22), denial (partial r = 0.27) and self-blame (partial r = 0.25). Planning, acceptance and humor coping strategies may be protective factors of anxiety. Strategies such self-management, relief, denial and self-blame may be risk factors for anxiety.

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Building Better Caregivers: A Pragmatic 12-Month Trial of a Community-Based Workshop for Caregivers of Cognitively Impaired Adults

Building Better Caregivers (BBC), a community 6-week, peer-led intervention, targets family caregivers of those with cognitive impairments. BBC was implemented in four geographically scattered areas. Self-report data were collected at baseline, 6 months, and 1 year. Primary outcome were caregiver strain and depression. Secondary outcomes included caregiver burden, stress, fatigue, pain, sleep, self-rated health, exercise, self-efficacy, and caregiver and care partner health care utilization. Paired t tests examined 6 month and 1-year improvements. General linear models examined associations between baseline and 6-month changes in self-efficacy and 12-month primary outcomes. Eighty-three participants (75% of eligible) completed 12-month data. Caregiver strain and depression improved significantly (Effect Sizes =.30 and.41). All secondary outcomes except exercise and caregiver health care utilization improved significantly. Baseline and 6-month improvements in self-efficacy were associated with improvements in caregiver strain and depression. In this pilot pragmatic study, BBC appears to assist caregivers while reducing care partner health care utilization. Self-efficacy appears to moderate these outcomes. 

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Comparing the Effects of Grief and Burden on Caregiver Depression in Dementia Caregiving: A Longitudinal Path Analysis over 2.5 Years

Objectives: Caregivers of persons with dementia can experience loss and grief long before the death of the person. Although the phenomenon of caregiver grief has been increasingly described, it is uncertain if caregiver grief has independent effects—separate from the well-studied construct of caregiver burden—on adverse outcomes such as caregiver depression. We sought to compare the effects of baseline grief and burden on caregiver depression at baseline and 2.5 years later. Design and Setting: A cohort study with 2.5 years of follow-up. Participants: Family caregivers of community-dwelling persons with dementia (n = 183). Measures: Participants completed questionnaires with scales that assessed caregiver grief, burden, and depression. Baseline grief and burden scores were included in a path analysis to predict depression at baseline and at 2.5 years. Results: At baseline, grief and burden had synergistic relationships with each other (P = .012), where the high levels of grief amplified the effect of burden on caregiver depression. Both grief and burden had longitudinal effects on caregiver depression at 2.5 years (P <.001 and P = .047, respectively), albeit with some differences in mechanism; both had effects which were indirectly mediated through baseline depression (P < .001 and P = .002, respectively), but only grief had a direct path toward depression at 2.5 years (P = .030), which was distinct from baseline depression. Conclusions and Implications: The findings highlight the need to identify and address caregiver grief in dementia services. They present a window of opportunity to improve caregiving outcomes, especially during the “latent phase” when caregivers encounter loss and grief but have yet to fully experience the debilitating effects of depression.

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Effects on stress reduction of a modified mindfulness-based cognitive therapy for family caregivers of those with dementia: Study protocol for a randomized controlled trial

Background: Caring for people with dementia (PWD) is stressful and poses many life challenges for the family caregivers. Interventions targeting the stress and psychological well-being of the caregivers have been proposed but the sustainable effects and efficacies of these interventions vary considerably. Mindfulness-based cognitive therapy (MBCT) has been shown to be effective at reducing stress in several populations. However, limited research on the effects of MBCT in family caregivers of PWD has been conducted. This study protocol aims to examine the effects on stress reduction of a modified MBCT for family caregivers of PWD. Methods: A prospective, single-blind, parallel-group, randomized controlled trial will be adopted. A convenience sample of 100 community-dwelling family caregivers of PWD will be randomized to either the modified MBCT or the control groups. The modified MBCT group will receive a 10-week, seven-session, group-based modified MBCT whereas the control group will receive a social interaction and routine education (SIRE) on dementia care program at a frequency and timing similar to those in the intervention group. The primary outcomes (stress) and secondary outcomes (depression, anxiety, burden, health-related quality of life, and the behavioral and psychological symptoms of the care recipient) will be measured immediately post-intervention (T1) and at 6-month follow-up (T2), which will be compared with the baseline (T0). Discussion: Reducing the stress of caregiving can promote the well-being of the family caregivers and maintain their sustainability in providing daily care for their family members with dementia. MBCT is found to be effective for stress reduction in other populations, and the results of this study are able to provide us with evidence for using MBCT as a standard supportive intervention for the family caregivers of PWD. Trial registration: ClinicalTrials.gov, NCT03354819. Registered on 28 November 2017. 

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Effects of a modified mindfulness-based cognitive therapy for family caregivers of people with dementia: A pilot randomized controlled trial

Background: Caregivers of people with dementia experience high stress levels. Mindfulness-based cognitive therapy has been found to be effective in reducing stress and improving the psychological well-being of several populations. Objective: To explore the feasibility and preliminary effects of a modified mindfulness-based cognitive therapy for family caregivers of people with dementia. Methods: In a single-blinded, parallel-group, randomized controlled trial, 36 caregivers of people with dementia were randomized to either the intervention group, receiving the 7-session modified mindfulness-based cognitive therapy in 10 weeks; or the control group, receiving the usual family care and brief education on dementia care. The brief education sessions were similar in frequency and duration to the intervention group. Various psychological outcomes of caregivers were assessed and compared at baseline, immediately post-intervention, and at the 3-month follow-up. A focus group with eight participants from the intervention group was conducted to identify the strengths, limitations, and difficulties of the intervention. Results: Intervention feasibility was established with a high completion rate of 83% (completing ≥5 out of the 7 sessions) and a low attrition rate of 11.1%. The duration of the average weekly home-based mindfulness practice of the caregivers was 180 minutes (S.D. = 283.8). The intervention group experienced a statistically significant decrease in stress levels (Z = -1.98, p = 0.05, Cohen's d = 0.7) and depressive symptoms (Z = -2.25, p = 0.02, Cohen's d = 0.8) at the post-test; and a decrease in stress (Z = -2.58, p = 0.01, Cohen's d = 0.9), depressive symptoms (Z = -2.20, p = 0.03, Cohen's d = 0.7), and burden (Z = - 2.74, p = 0.006, Cohen's d = 1.0), and improved quality of life (physical) (Z = -1.68, p = 0.09, Cohen's d = 0.6) at the 3-month follow-up compared to the controls. A focus group conducted immediately after the intervention revealed three major themes: Impacts on the family caregivers, Impacts on the people with dementia, and Difficulty in practicing mindfulness. Conclusion: The findings support the feasibility and preliminary effects of the modified mindfulness-based cognitive therapy on reducing the stress of caregivers and improving their psychological well-being. Some potential effects on people with dementia (e.g., improvements in behavioral problems) were reported by the caregivers. A future study with a larger and more diverse sample is proposed to evaluate the longer-term effects and generalizability of the modified mindfulness-based cognitive therapy and the impacts on people with dementia. 

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'What happens when I can no longer care?' Informal carers' concerns about facing their own illness or death: a qualitative focus group study

OBJECTIVES: Older informal carers play an increasingly important role in supporting others with long-term health conditions. This study aimed to explore in depth the perspectives of older carers (70+ years) supporting others with a variety of conditions and disabilities focusing on their thoughts and experiences about when they are unable to continue caring. DESIGN: Qualitative with four focus groups. SETTING: Greater London, UK. PARTICIPANTS: 28 older carers (70+ years) recruited from the voluntary sector participated in this study. Most were women and many were spouses caring for partners with age-related conditions such as dementia, arthritis and visual impairment. Nearly a third were parents of adult children with severe physical or cognitive disabilities. FINDINGS: Thematic analysis identified two main aspects for carers when contemplating the future-when they are unable to care in the short term or long term if they die or can no longer manage. Themes included the following: the impact of age, health conditions and relationships on future planning; anxiety about future care; carers' ambivalence and challenges in broaching the subject; interventions that might help older carers talk about and plan for the future of those they care for. CONCLUSIONS: Services need to be open to talking about this difficult topic. Our findings suggest that frank discussions about when older carers cannot care and having plans in place, whether these are financial or address other practical issues, makes it easier for all concerned. However, this issue is not easily broached and its timing and ways to access this support must be carefully and individually gauged. Future research with more diverse demographic groups is needed to improve understanding of these carers' perspectives. Research is also needed to develop interventions to support older carers to talk about and plan for the future.

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Understanding the psychosocial impact of oral cancer on the family caregivers and their coping up mechanism: A qualitative study in Rural Wardha, Central India

A family caregiver is the one who provides care to their near and dear one who is suffering from some debilitating disease like oral cancer. Apart from providing physical care, they also provide emotional and financial support to their close relatives. They can be the patient's spouse, children, and siblings. This study was, hence, designed to understand the psychosocial impact of caregivers of oral cancer patients. Methodology: This was a qualitative study using in-depth interviews of 24 purposively chosen family caregivers irrespective of age, sex, and relationship with patients, who provided deep insight into the psychosocial impact of the disease on themselves during caregiving of their loved ones and how they coped with it. Interviews were taken in Hindi, in the houses of caregivers. Care was taken to maintain utmost privacy while taking the interviews, which were either audio recorded or noted down. Informed written consent was obtained from participants before the start of the study. Themes were evolved from the interviews and content analysis was performed using ATLAS.ti. Results: Six themes emerged after data analysis. Those were the impact on physical health and lifestyle, emotional impact, impact on family and social relationship, impact on financial and work status, improvement of hospital services, spiritual concern, and acceptance of the disease. A concept map was made to provide a vivid explanation of how oral cancer caused these impacts on caregivers and their interrelationship. Conclusion: Caregiving is not an easy job. This study recommends extra care to be taken in preparing them for caregiving to the oral cancer patients with adequate knowledge of the disease process and its consequences along with counseling facilities in the hospital to address the different psychosocial needs of the patients. 

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The emotional and psychological burden of the "burnout" in families of psychiatric patients

People, who assist patients with chronic health problems for work, voluntary or for family reasons, may be affected by burnout. This is defined as an excessive reaction to stress caused by one's environment that may be characterized by feelings of emotional and physical exhaustion, coupled with a sense of frustration and failure. A person who assists a suffering person, beyond the professional role, is indicated generally by the term "caregiver". The definition of Burnout in families is fairly recent, because the psychology of trauma has ignored a large segment of traumatized and disabled subjects (family and other assistants of "suffering people") unwittingly, for a long time. The burnout of secondary stress is due to one's empathic ability, actions trough disengagement, and a sense of satisfaction from helping to relieve suffering. Figley (1995) claims that being a member of a family or other type of intimate or bonded interpersonal relationship, one feels the others' pain. Closely associated with the suffering of the family caregiver is the concept of compassion fatigue, defined as a state of exhaustion and disfunction-biologically, psychologically, and socially - as a result of prolonged exposure to compassion stress and all that it evokes. In families, this can be the cause of serious conflicts and problems, quarrels, verbal and physical aggression, and broken relationships. The intervention on families requires practice and effectiveness approaches performed by experienced professionals. Some approaches focus more specifically, such as those that adopt a cognitive/behavioural technique with direct exposure, implosion methods, various drug treatments and family group psychotherapy. One of the most common models of intervention is based on the principle that the observation unit for the understanding of the disorder is not the single individual but the relationship between individuals.

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Perceived stress, resilience, and health‐related quality of life among Parkinson's disease caregivers in Mexico

The stress process model of caregiving posits that caregivers' internal psychosocial resources may serve as buffers between the stress associated with caregiving and well‐being. Empirical support for the stress process model exists for several caregiving contexts, but little research has investigated the Parkinson's disease caregiving experience in Mexico. Using a cross‐sectional, correlational design, the objective of this study was to examine whether resilience moderates the relation between perceived stress and health‐related quality of life (HRQOL) among Parkinson's disease caregivers in Mexico. Data were collected from April 2015 to February 2016 during outpatient neurology appointments in Mexico City, Mexico. Participants included informal caregivers (N = 95) for a family member with Parkinson's disease. Participants completed a battery of questionnaires assessing their level of perceived stress, resilience, and HRQOL. Regression analyses indicated that resilience moderated the inverse relation between perceived stress and mental HRQOL. However, contrary to hypotheses, resilience did not moderate the relation between stress and physical HRQOL. Findings shed light on resilience as a potential protective factor for mental HRQOL among Parkinson's disease caregivers in Mexico and indicate that resilience may be beneficial to target in mental health promotion interventions.

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Factors associated with high strain in caregivers of Alzheimer's disease (AD) in Malaysia

A cross-sectional study design involving a total of 230 participants, recruited through Alzheimer's Disease Foundation Malaysia (ADFM), was adopted to access and correlate caregiver strain index (CSI) and resilience (RES) levels of the AD caregivers with various patients’ and caregivers’ factors. Findings revealed that 77.7% of caregivers had a high level of stress, and there was a significant negative correlation between RES and CSI (P < 0.001). Care recipients’ physical function was negatively associated with CSI level. Caregivers’ gender and employment status were not directly associated with CSI but were significantly associated with caregivers’ RES level. Among the mediator variables, years of care was related to increase CSI and adult-children of AD patients experienced a higher level of caregiver strain compared to the other caregiver groups (P = 0.025). Thus, interventions to improve the family caregivers’ RES level, and support for AD patients will be helpful in lowering the strains of AD caregivers.

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Remembering Sleep: Sleep Deprivation and Symptom Management at Home

Carter focuses on sleep deprivation and symptom management at home. Family caregivers provide increasingly complex care at home to family members and friends with cancer. Care that was once provided in the hospital by skilled, highly educated, and often advanced certified oncology nurses is now being provided in the home by family caregivers who are most often not in possession of these skill sets. With the advancement of therapies and delivery methods such as oral therapies and outpatient infusions, cancer care has moved out of the hospital and into the community. A unique contribution of nursing science to the understanding of human experiences is that we holistically evaluate biopsychosocial contributors to those experiences.

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Anxiety, depression and quality of life in chronic obstructive pulmonary disease patients and caregivers: an actor–partner interdependence model analysis

Purpose: We aimed to assess the influence of anxiety and depression on the physical and mental quality of life (QoL) in patient with chronic obstructive pulmonary disease (COPD) and caregiver dyads, detect the simultaneous effect of anxiety and depression of each partner on the other’s QoL and determine the dyadic patterns. Methods: A cross-sectional descriptive design was used. The actor–partner interdependence model estimated by structural equation modeling was used for the dyadic analysis. Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorder-7 (GAD-7) and 12-Item Short-Form Health Survey (SF-12) were used to measure depression, anxiety and QoL, respectively. Results: Eighty COPD dyads were enrolled in the study. Patients presented higher depression symptoms and poorer physical and mental QoL than their caregivers, whereas comparable levels of anxiety were found in patients and caregivers. The model exploring the effects of depression and anxiety on mental QoL found that patients’ depressive symptoms negatively influence their mental QoL, and caregivers’ anxiety and depression symptoms negatively impact their mental QoL. The model exploring the effects of anxiety and depression on physical QoL detected one statistically significant actor effect with patients’ depressive symptoms negatively influencing their physical QoL, and two partner effects with caregivers’ anxiety worsening patients’ physical QoL and caregivers’ depression improving patients’ physical QoL. Conclusions: The results suggest that caregivers’ psychological distress influences caregivers’ mental QoL and patients’ physical QoL. Therefore, health-care professionals should assess and treat anxiety and depression in both members of the COPD dyad to improve their QoL.

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Intracranial Tumors: A nurse-led intervention for educating and supporting patients and their caregivers

BACKGROUND: Behavioral symptoms among postoperative patients with intracranial tumors and distress among caregivers are common. OBJECTIVES: This article aimed to assess the effectiveness of a brief nurse-led intervention on behavioral symptoms of postoperative patients with intracranial tumors and distress of their caregivers. METHODS: A randomized controlled trial was conducted on 80 patients with intracranial tumors and their family caregivers in a tertiary care institute in India. A brief nurse-led intervention was provided in the form of individual counseling, and a pamphlet was given to patients and caregivers in the experimental group at the time of discharge. Behavioral symptoms of patients and distress of caregivers were assessed. FINDINGS: Patients in the experimental group had significantly fewer behavioral symptoms and less severity of behavioral symptoms as compared to the control group. Caregivers in the experimental group had significantly less severity of distress as compared to the control group. 

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The impact of informal cancer caregiving: A literature review on psychophysiological studies

Caregiving can be experienced as a stressful process, which can cause psychological and physical consequences. The combination of prolonged stress and the physical demands of caregiving may impair the physiological functioning of caregivers and increase the risk of health problems creating considerable stress in the life of caregivers regarding emotional, physical, social and financial areas. This literature review explored studies that used measures of the autonomic nervous system in caregivers of oncology patients such as electrodermal and cardiovascular (re)activity. The results revealed that caregivers had elevated stress levels and a serious autonomic imbalance that may, in the long term, trigger negative health consequences such as infectious diseases, cancer progression, cardiovascular disease and even premature death. The results showed the need to carry out preventive strategies in this population, in order to improve the autonomic profile of caregivers of cancer patients.

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"I Don't Feel Like I Have Any Control of My Life at All . . . Everything Overwhelms Me. Everything": Analyzing Caregiver Uncertainty and Control Through Stance Marking

Informal caregivers immersed in the daily care of loved ones at end-of-life stages face such challenges as medical and household issues, worries, doubts, and uncertainties. Using a macro-mezzo-micro approach to discourse, we analyzed parent study interview data involving 46 caregivers facing end-of-life realities. At the mezzo level, we examined caregivers' expressed perceptions of control. We then more finely analyzed discursive expressions of affective stances pertaining to caregivers' emotions and feelings, and epistemic stances pertaining to their knowledge and belief states. Theories of uncertainty and control inextricably interweave areas of cognition, affect, and behavior regarding how caregivers perceive their realities and how they engage in or disengage from coping mechanisms in the process. The findings in this three-tiered approach make salient specific discursive patterns gleaned from systematic and fastidious attention to caregivers' own ways of using language that methodically afford deeper entry into the emotional, physical, and cognitive challenges in their everyday lived experiences.

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"He was no longer listening to me": A qualitative study in six Sub-Saharan African countries exploring next-of-kin perspectives on caring following the death of a relative from AIDS

In the era of widespread antiretroviral therapy, few studies have explored the perspectives of the relatives involved in caring for people living with HIV (PLHIV) during periods of ill-health leading up to their demise. In this analysis, we explore the process of care for PLHIV as their death approached, from their relatives' perspective. We apply Tronto's care ethics framework that distinguishes between care-receiving among PLHIV on the one hand, and caring about, caring for and care-giving by their relatives on the other. We draw on 44 in-depth interviews conducted with caregivers following the death of their relatives, in seven rural settings in Eastern and Southern Africa. Relatives suggested that prior to the onset of poor health, few of the deceased had disclosed their HIV status and fewer still were relying on anyone for help. This lack of disclosure meant that some caregivers spoke of enduring a long period of worry, and feelings of helplessness as they were unable to translate their concern and "caring about" into "caring for". This transition often occurred when the deceased became in need of physical, emotional or financial care. The responsibility was often culturally prescribed, rarely questioned and usually fell to women. The move to "care-giving" was characterised by physical acts of providing care for their relative, which lasted until death. Tronto's conceptualisation of caring relationships highlights how the burden of caring often intensifies as family members' caring evolves from "caring about", to "caring for", and eventually to "giving care" to their relatives. This progression can lead to caregivers experiencing frustration, provoking tensions with their relatives and highlighting the need for interventions to support family members caring for PLHIV. Interventions should also encourage PLHIV to disclose their HIV status and seek early access to HIV care and treatment services. 

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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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Cancer, a relational disease exploring the needs of relatives to cancer patients

Purpose : In this qualitative interview study we investigated the experiences of family members to cancer patients. Our objective was to explore and to differentiate their needs from the needs of cancer patients. Methods : Five focus groups and six individual narrative interviews with 17 family members to cancer patients in Sweden were conducted and compared with 19 cancer patient interviews. Our analysis was inspired by classic grounded theory. Results : Family members to cancer patients expressed own morbidity connected to high stress levels and difficulties in recognizing own stress due to ongoing comparisons with the cancer patient. Family members were trapped in a momentary terror-like situation where they became their sick relative’s safety net. A percieved inability to improve their loved one’s well being contributed to a feeling of guilt. The longing for it all to end was encumbered with shame since the end included possible death. Conclusions : By recognizing cancer as a disease striking both body and relationships, family members are given precedence over their own struggles, differentiated from the patient’s experiences. We define differences in needs between cancer patients and family members. Family members to cancer patients may be supported in developing balancing strategies towards less stress, increased safety and moments of contentment.

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Predictors of Secondary Role Strains Among Spousal Caregivers of Older Adults With Functional Disability

Background and Objectives: Aging spouses commonly care for a partner with functional disability, but little is known about how spousal caregiving may impact different life domains. This study evaluated how caregiving characteristics are associated with secondary role strains among spousal caregivers. Research Design and Methods: This cross-sectional study examined 367 spousal caregivers and their partners from the 2011 National Health and Aging Trends Study and National Study of Caregiving. Hierarchical regressions were estimated to determine how caregiver background factors (sociodemographics, health conditions) along with primary objective (care activities, care recipient health conditions, and dementia status) and subjective (emotional caregiving difficulties, role overload) stressors are linked to care-related valued activity restriction, negative caregiving relationship quality, and care-related family disagreements. Gender differences were considered. Results: After accounting for all predictors, older caregivers and caregivers providing more help with activities of daily living and health system interactions (e.g., scheduling appointments) were more likely to report activity restriction, whereas caregivers with more emotional difficulties reported higher negative caregiving relationship quality. Role overload was positively associated with all three secondary strains. For husbands only, caring for a partner with more chronic conditions was linked to higher negative caregiving relationship quality and caring for a partner with dementia was associated with a greater likelihood of family disagreements. Discussion and Implications: Secondary role strains may develop through similar and unique pathways for caregiving wives and husbands. Further research is needed to identify those who could benefit from support in managing their care responsibilities alongside other life areas.

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The effectivness of a strengths-oriented therapeutic conversation intervention on perceived support, well-being and burden among family caregivers in palliative home-care

Aims: To evaluate the effectiveness of a two-session multicomponent family strengths- oriented therapeutic conversation intervention among family caregivers of an individual with advanced/final stage cancer during ongoing palliative home-care.; Background: Family caregivers of patients in the advanced/final phases of cancer, experience multifaceted psychological distress and morbidity. Psychosocial interventions improve the well-being of family members who are caring for their close relative.; Design: A pre-experimental design with a one-group pre-test/posttests measurements.; Methods: Forty-eight family caregivers were assigned to receive two 60-90 min sessions of the intervention. The primary outcome was perceived emotional and cognitive support and psychological well-being, measured at baseline (T1). Then the participants were offered the first session of the intervention. About one week later, the second session was administered. The participants answered the same questionnaires again (T2) and then 2-4 weeks later (T3). The guideline; Criteria for Reporting Development and Evaluation of Complex Interventions 2, guided the reporting of the study.; Results: Family caregivers reported significantly higher emotional and cognitive support post-intervention (T2) and (T3). They also reported significantly reduced stress symptoms at (T3) and reduced caregiver burden post-intervention (T2) and at (T3).; Conclusion: The provision of the intervention contributed to extending knowledge about the usefulness of family conversations in the context of advanced/final stage cancer care.; Impact: There is a lack of knowledge regarding the benefit of therapeutic conversations interventions for family caregivers. The therapeutic conversation intervention offered, resulted in perceived support, decreased stress and decreased caregiving demands among caregivers in palliative home-care. 

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Acceptance and Commitment Therapy for Symptom Interference in Advanced Lung Cancer and Caregiver Distress: A Pilot Randomized Trial

Context: Advanced lung cancer patients typically have a poor prognosis and many symptoms that interfere with functioning, contributing to high rates of emotional distress in both patients and family caregivers. There remains a need for evidence-based interventions to improve functional outcomes and distress in this population.; Objectives: This pilot trial examined the feasibility and preliminary efficacy of telephone-based Acceptance and Commitment Therapy (ACT) for symptomatic, advanced lung cancer patients and their distressed family caregivers. Primary outcomes were patient symptom interference with functioning and patient and caregiver distress.; Methods: Symptomatic, advanced lung cancer patients and distressed caregivers (n=50 dyads) were randomly assigned to six sessions of ACT or an education/support condition. Patients completed measures of symptom interference and measures assessing the severity of fatigue, pain, sleep disturbance, and breathlessness. Patients and caregivers completed measures of distress and illness acceptance and struggle.; Results: The eligibility screening rate (51%) and retention rate (76% at 6 weeks post-intervention) demonstrated feasibility. No group differences were found with respect to patient and caregiver outcomes. Both groups showed a small, significant decrease in struggle with the illness over the study period, but did not show meaningful change in other outcomes.; Conclusion: Findings suggest that telephone-based ACT is feasible for many advanced lung cancer patients and caregivers, but may not substantially reduce symptom interference and distress. Low baseline levels of certain symptoms may have contributed to null findings. Next steps include applying ACT to specific, clinically meaningful symptom interference and varying intervention dose and modality.

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The impact of goal adjustment and caregiver burden on psychological distress among caregivers of cancer patients

Objectives: Research has demonstrated that serving in the caregiver role is often associated with increased symptoms of depression, stress, and anxiety, but some people fare better than others in managing the burden of caregiving. The goal of the present study was to examine the potential moderating role of goal adjustment (the ability to disengage from unattainable goals and reengage in alterative ones) on the relation between caregiver burden and distress in family caregivers of cancer patients. Methods: Caregivers of adult family members diagnosed with cancer in the past 3 years participated (N = 102). Participants were consented and completed online questionnaires on psychological distress, caregiver burden, and goal adjustment. Results: The ability to disengage from unattainable goals was associated with lower anxiety and stress in the face of increasing caregiver burden. By contrast, the ability to reengage in alternative goals was associated with lower depression as burden increased. Conclusions: The present study suggests that goal adjustment may play an important moderating role in the relationship between caregiver burden and distress. Caregivers who are better able to disengage from unattainable goals may experience less stress and anxiety, and caregivers who are better able to reengage in alternative goals experience less depressed mood. This study provides preliminary evidence that learning different ways to approach and adjust goals may reduce depression, anxiety, and stress in family caregivers. 

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Caregiver emotional distress: external open-behaviour signs

Objectives: To determine whether specific external signs of emotional distress (ESED) can be an indirect measure of emotional distress in caregivers.; Methods: A cross-sectional multicentre design was used. 148 primary caregivers of advanced cancer patients attended in four Spanish palliative care units participated in this study. The emotional distress of caregivers was measured using both the Emotional Distress of Caregivers Scale and a psychological interview. Health professionals collected data using a standard clinical interview process after a brief training period.; Results: More than half the caregivers (60%) presented with emotional distress. A positive correlation (r=0.566) was found between the intensity of ESED and emotional distress per se. Caregivers who presented emotional distress showed more ESED than those that did not (p<0.01). The study found significant differences for the categories 'visible signs of sadness, fear, crying, feeling overwhelmed' (p<0.001), 'difficulty in separating from the patient: family refuses to let the patient make decisions and insists on care' (p<0.001) and 'visible signs of anger, irritability or frequent disagreement with therapeutic measures' (p<0.001). No significant differences were found with respect to gender. The set of items to measure these external signs presented an adequate reliability assessed using Cronbach's alpha (α=0.773).; Conclusions: The assessment of ESED in caregivers could serve as a useful method to assess their emotional distress. Incorporating the systematic assessment of these external signs as part of the assessment of the emotional distress of primary caregivers could improve the overall assessment and treatment provided to these caregivers.

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The Effect of Group Counseling Based on Quality of Life Therapy on Stress and Life Satisfaction in Family Caregivers of Individuals with Substance Use Problem: A Randomized Controlled Trial

Family caregivers of people with substance abuse are exposed to psychological problems that diminish their life quality and satisfaction. The purpose of this study was to diagnose the efficacy of quality-of-life intervention on stress and life satisfaction of family caregivers of individuals with substance use problem. This is a randomized controlled trial conducted on 80 family caregivers of individuals with substance use problem in the process of withdrawal who were referred to a psychiatric center in southeastern Iran (2018). The intervention group received seven sessions of quality-of-life group counseling every other day based on predetermined content. Twelve weeks post-intervention, data were collected from the control and intervention groups using the Depression Anxiety and Stress Scales (DASS-21) and the Satisfaction with Life Scale (SWLS). The results were analyzed through statistical tests. After group counseling based on quality of life, the mean stress score in the family caregivers of the intervention group (11.50 ± 4.36) was significantly lower than in those of the control group (14.67 ± 4.93) (p = 0.003). Also, in the posttest, the mean score of life satisfaction in the intervention group (24.75 ± 4.28) was significantly higher than that of the control group (19.57 ± 7.33) (p = 0.001). Group counseling based on quality of life exerted a significantly positive impact on reducing the severity of stress and improving life satisfaction among family caregivers of individuals with substance use problem. Therefore, it is highly recommended that healthcare service providers incorporate this counseling approach in substance use withdrawal programs so as to increase the well-being and mental health of family caregivers.

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Qualitative study of bereaved carers' experiences in advanced melanoma

Melanoma is the deadliest form of skin cancer. In Australia, where this study was conducted, there were 1,281 deaths from melanoma in 2016. Treatments for melanoma have changed rapidly in recent years with the introduction of immune and targeted therapies. These have resulted in longer term survival for some, but it is not clear which patients these treatments will work for, and for how long. This study aimed to understand the impact of melanoma treatments, as they relate to diagnosis and prognosis, on the experiences of family carers. Interviews were conducted with twenty carers of patients who were treated at three melanoma centres in Australia and who subsequently died. The study found that diagnosis of advanced melanoma was a time of uncertainty as carers struggled to understand the implications of the diagnosis. Treatment options in the form of relatively new immune and targeted therapies added to uncertainty around prognosis (i.e. the likely outcome, such as chance of survival). Carers reported unclear communication of prognosis by medical specialists. Some carers reported that medical specialists did not want or were not able to give a prognosis. Many carers expected that treatments would have positive outcomes. The study findings indicate that medical specialists should recognise and address carer understanding of and need for information about prognosis as early as possible following diagnosis. Communication of the uncertain benefit of these new therapies can help patients and carers make decisions about treatment preference and care planning

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Caregivers' experiences of service transitions in adult mental health: An integrative qualitative synthesis

Approximately 5% of the UK population live with serious mental health problems. Data show that informal caregivers of people with mental illness provide care for the highest number of hours compared to other illness and the economic cost of this care is highest in the UK when compared internationally. People living with serious mental health problems make transitions between different intensities of service as their needs fluctuate, including referral, admission, transfer or discharge. Although caregiving is associated with both stress and positive reward, service transitions are particularly associated with increased stress. This review aimed to investigate what is known about the experiences of informal caregivers during mental health service transitions. An integrative qualitative synthesis was conducted following searches in six bibliographic databases and of the grey literature. Studies published in English between 2001 and 2017 were included if the study focus was on serious mental health problems, the experiences of caregivers and service transitions. Eleven studies were included, appraised using the Mixed Methods Appraisal Tool and synthesised, resulting in four themes: (a) Caregiver information, (b) Caregiver involvement in decisions about care and treatment, (c) Accessing services, (d) Being a caregiver. Caregivers' experiences were similar during transitions to their usual caregiving role but they faced more challenges and their experiences were amplified. Concerns about confidentiality created barriers to information sharing. Continuity of professionals across transitions was helpful. Caregivers struggled to deal with their own conflicting emotions and with the behaviours of the person yet rarely received help. The review findings point to a need for continuity of professionals across service transitions, co-designed and delivered training for professionals and caregivers about information sharing, greater understanding of barriers to implementation of family interventions and interventions that address emotional needs of caregivers.

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Community Treatment Orders and Supported Decision-Making

This paper presents findings from an interdisciplinary project undertaken in Victoria, Australia, investigating the barriers and facilitators to supported decision-making (SDM) for people living with diagnoses including schizophrenia, psychosis, bipolar disorder, and severe depression; family members supporting them; and mental health practitioners, including psychiatrists. We considered how SDM can be used to align Australian laws and practice with international human rights obligations. The project examined the experiences, views, and preferences of consumers of mental health services, including people with experiences of being on Community Treatment Orders (CTOs), in relation to enabling SDM in mental health service delivery. It also examined the perspectives of informal family members or carers and mental health practitioners. Victoria currently has high rates of use of CTOs, and the emphasis on SDM in the Mental Health Act, 2014, is proposed as one method for reducing coercion within the mental health system and working towards more recovery-oriented practice. Our findings cautiously suggest that SDM may contribute to reducing the use of CTOs, encouraging less use of coercive practices, and improving the experience of people who are subject to these orders, through greater respect for their views and preferences. Nonetheless, the participants in our study expressed an often ambivalent stance towards CTOs. In particular, the emphasis on medication as the primary treatment option and the limited communication about distressing side effects, alongside lack of choice of medication, was a primary source of concern. Fears, particularly among staff, about the risk of harm to self and others, and stigma attached to complex mental health conditions experienced by consumers and their families, represent important overarching concerns in the implementation of CTOs. Supporting the decision-making of people on CTOs, respecting their views and preferences about treatment, and moving towards reducing the use of CTOs require system-wide transformation and a significant shift in values and practice across mental health service delivery.

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Racial Differences in Caregiving: Variation by Relationship Type and Dementia Care Status

Objective: To examine differences between White and African American caregivers in strain, health, and service use in a population-based sample of informal caregivers for older adults. We also assessed whether relationship type (parent, other family, friend) and dementia care status (yes or no) were moderators of any racial differences. Method: We examined 887 informal caregivers via covariate-adjusted 3 × 2 × 2 factorial ANOVAs. Results: After covariate adjustment, there were few significant racial differences in caregiving strain, health, and service use. Dementia caregivers reported greater strain, and there were three-way interactions among relationship type, dementia care status, and race for physical strain and emotional stress. Discussion: Previous findings suggesting substantial racial differences in caregiver strain, which have primarily come from convenience samples that combined care relationship types, were not replicated. Racial and ethnic differences in caregiving may be context-specific. Historical changes in caregiving should be examined in future research.

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Informal health care: examining the role of women and challenges faced as caregivers in rural and urban settings in Ghana

Objective: Globally, the informal health sector is continuing to experience increasing growth despite the parallel development of the formal health care sector over the years. However, studies in Ghana concerning caregiving are limited since little attention has been given to the informal health care sector. This study therefore explores the role of women as caregivers and the challenges they face in the Kumasi Metropolis and Ejisu Juaben Municipality in Ashanti Region of Ghana. Methods: In-depth interviews were conducted with 20 caregivers from the two study areas. Data were analyzed and presented based on a content and thematic analysis approach. Results: Findings from the study showed that caregivers perform key roles including those of a domestic, health care, economic, social and spiritual nature. However, caregivers were confronted with many challenges, including inadequate funds, inability to work effectively, prolonged stress, limited time for socialization and emotional trauma. Conclusion: For caregivers to perform their roles efficiently and effectively, government and health care authorities must provide them with immediate financial support and training. Also, in the near future policy makers should put a comprehensive policy in place to bolster caregiving in general.

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A forgotten Army: Coping as a carer

Unpaid carers are the backbone of our society who often go unrecognised for their dedication and compassion. They face a range of challenges as they attempt to juggle their work-life-care responsibilities. That’s why we decided to commission YouGov to conduct a UK-wide research project focused on identifying gaps in support and sought to understand the views of unpaid carers.

Key findings

The impacts of loneliness, poor mental and physical health, financial worries and a lack of flexibility to learn or train are placing unpaid carers under increasing strain.

  • Two thirds (64%) of carers were most likely to feel the effect of caring on their social life, causing loneliness, which most commonly manifested as a result of having less time to themselves (48%), socialising less (47%) and generally having less contact with others (41%).
  • The next most common impact was mental ill health (49%). This included increased stress (42%), anxiety (33%) and depression (27%).
  • Almost half (45%) mentioned impacts that caring had on their family life, most notably spending less time with family.
  • Two in five carers reported an impact of caring on their physical health, most often mentioning tiredness (35%), trouble in sleeping (28%) and reduced fitness (20%).
  • More than two in five (44%) unpaid carers noted the impact of caring on their financial situation. The qualitative phase of the research also revealed many hidden costs of caring, including paying for medical supplies and transport to and from appointments.
  • Three in ten unpaid carers aged 16-34 said that their education or training had been affected.

When carers were asked about their support needs, a sizable majority (74%) of carers felt that further support in some form would be useful to them, with a common desire for emotional support (33%). Carers also sought information and advice about the support available, respite care, and finances. Our report also found that there was a need for advice about maintaining good mental and emotional health, shining a light on the often unexpected levels of stress, isolation and despondency felt by unpaid carers.

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Dementia caregiver interventions in Chinese people: A systematic review

Aims: The aim of this systematic review was to examine the characteristics and the efficacy of dementia caregiving interventions among the Chinese population. Background: In recent years, an increasing number of dementia caregiving interventions have been developed for Chinese older adults living in Asia that aim to reduce caregivers' burden, depression and distress, and enhance quality of life. Little is known, however, on the nature and the efficacy of these interventions. Design: Systematic review with narrative summary. Data sources: We searched four databases for studies published in English between 1 January 1994–30 December 2017. Nineteen studies reported in 23 articles were included in the final analysis. Review methods: We used a set of criteria from the Cochrane Collaboration tool to assess for the risk of bias across studies. Results: We found that interventions varied in length, frequency, approach, and content, making comparisons across studies challenging. Caregivers' burden, depression, and distress were improved among most included studies. All studies that examined quality of life of caregivers (N = 6) showed improvement. Most of the interventions showed beneficial effects on care recipients' behavioural symptoms, agitation, and depression; cognitive function, however, failed to improve. Conclusion: Although the review found mixed results on intervention outcomes, the majority of interventions showed a potential to improve the health and well‐being of dementia caregivers and care recipients. This review provides suggestions for future dementia caregiving research in the Chinese population, such as inclusion of relevant theoretical frameworks and more rigorous research designs

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Stress and burden faced by family caregivers of people with schizophrenia and early psychosis in Hong Kong

Background/aim: Families, especially in Chinese society, play a crucial role in care provision for relatives with schizophrenia, but the burden of caregiving has shown to cause significant distress among caregivers. The aim of the study is to assess the degree of stress and burden among caregivers of relatives with schizophrenia and early psychosis in Hong Kong.; Methods: A cross-sectional survey was conducted in 454 caregivers recruited from two mental health non-governmental organisations and the outpatient clinic of a psychiatric hospital. Data were collected through a questionnaire administered via face-to-face or telephone interview.; Results: Caregivers attributed most of their conflicts with the ill relative or other family members to their own lack of knowledge of patient symptoms (56.4%), other family members' lack of knowledge of patient symptoms (46.9%) or the ill relative's refusal to take medications (43.0%). Most of the caregivers had corresponding stress scores of 5 (scale: 1-5; mean = 3.88, 3.85 and 4.19, respectively). Nearly, a third (30.2%) of the caregivers surveyed reported an overall stress score of 5 (mean = 3.56). Regarding psychosocial problems, 78.0%, 49.8% and 45.8% of caregivers experienced anxiety, reduced socialising and insomnia, respectively.; Conclusions: Caregivers of relatives with schizophrenia and early psychosis experience significant stress and psychosocial burden. To help them cope with distress, community support services should be strengthened. Moreover, long-acting injectable antipsychotics are worth considering to alleviate caregiver burden due to ill relatives' medication compliance issues.

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Refining caregiver vulnerability for clinical practice: determinants of self-rated health in spousal dementia caregivers

Background: Caregivers of a family member with a chronic disability or illness such as dementia are at increased risk for chronic disease. There are many factors that contribute to dementia caregiver vulnerability and these factors can be challenging to assess in clinical settings. Self-rated health (SRH) is an independent measure of survival and physical health in the elderly. As an inclusive measure of health, SRH has been proposed as a reliable way to assess a patient's general health in primary care. Therefore, we sought to identify determinants of poor/fair SRH versus categories of at least good SRH in informal caregivers.; Methods: In a cross-sectional study, we examined 134 elderly (≥55 years) providing in-home care for a spouse with dementia who rated their own health with a single-item question: "In general, would you say your health is excellent, very good, good, fair or poor?". In a multivariable model, we compared caregivers with poor/fair SRH to those with good, very good, or excellent SRH on demographics, health characteristics (health behaviors, physical health indicators, psychosocial factors) and caregiving-specific stress (a composite index/total of four caregiving-specific stressors: years of caregiving, dementia severity, care recipient functional impairment and perceived caregiver burden).; Results: Compared with caregivers who rated their own health as either good (31.3%), very good (38.8%) or excellent (14.2%), caregivers with poor/fair SRH (15.7%) were more likely to have lower physical function and total greater caregiving-specific stress. More years of caregiving, severe dementia and care recipient functional impairment, but not perceived caregiver burden, were also more likely among caregivers with poor/fair SRH. Additionally, high negative affect and low positive affect were more likely in caregivers with poor/fair vs. good or excellent and very good or excellent SRH, respectively.; Conclusions: Caregivers with poor/fair SRH were characterized by higher levels of medical comorbidity, low physical function, high negative, but low positive affect and longer duration of caregiving, as well as more severe dementia and greater functional impairment of the care recipient. These findings suggest that caregivers need to be more closely evaluated and targeted for preventive interventions in clinical practice.; Trial Registration: ClinicalTrials.gov registration number: NCT02317523 .

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Predictors of burden in Australian mental health caregivers: a cross-sectional survey

Background: The shift towards providing mental healthcare in the community has resulted in caregivers becoming more involved in the delivery of these services. Supporting mental health consumers can be burdensome which, in conjunction with the anguish that may result from observing their relative develop a mental illness, can lead to carers experiencing significant levels of distress.; Aims: This study aimed to quantify the extent to which specific aspects of caregiving contribute to mental health burden in Australia.; Methods: Participants were included if they were Australian mental health caregivers. An online questionnaire was distributed via email. Multivariate logistic regression was used to identify predictors of burden in mental health caregivers.; Results: Completed questionnaires were collected from 231 respondents. The logistic regression analysis yielded five factors that contributed significantly to mental health caregiver burden. Of these factors, a strained atmosphere and regularly carrying out tasks for consumers were the two strongest predictors of burden.; Conclusion: Community health professionals could focus on interpersonal relationships between family members, access to disability and financial support services, and carers' views about the quality of healthcare provided to consumers. Addressing these issues may decrease carer burden and improve the quality of life for all family members.

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The Hidden Health Crisis: What Family Caregivers Want You to Know

I looked at the diagnostic specialist and burst into tears. She had seen other women like me and knew what was wrong with my shoulder. Finally, after 14 months of being tossed between physicians, specialists, and physical therapists and many misdiagnoses, I had an answer: frozen shoulder. It explained the extreme pain in my shoulder along with the stiffness and inability to move the shoulder joint. This condition takes 1 to 3 years to resolve, and there is little that can be done to relieve the pain or force the shoulder to move. 

  1. MaryAnne’s Story

  2. The Caregiving Journey

  3. Stories From the Front Lines

  4. The Hidden Health Crisis

 
 
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A pilot study: Resistive behavior in the context of informal caregiver-assisted activities of daily living

Providing care for people with dementia is difficult when resistive behaviors displayed by people impede caregiving efforts.; Purpose: To examined the frequency of resistive behaviors during informal caregiver-assisted activities of daily living and the impact of these occurrences.; Design: A cross sectional design was used to recruit 17 caregivers from Alzheimer's support group meetings in 2010.; Method: Self-report surveys were used to obtain participants' report of resistive behaviors.; Findings: A positive correlation was found between caregivers reported frequency of bathing behaviors and their reported upset with dressing behaviors. Gender differences emerged in caregiver reported frequencies of the resistive behaviors. Caregivers reported behaviors occurring between two and six times per week but rated the not frequent behaviors as somewhat to very upsetting when they occurred.; Conclusions: When informal caregivers provide assisted care, resistive behaviors occur. Future research is needed to identify interventions to help caregivers manage their upset when resistiveness occurs.

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Positive and negative impacts of schizophrenia on family caregivers: a systematic review and qualitative meta-summary

Purpose: Schizophrenia places a heavy burden on the individual with the disorder, as well as on his or her family; this burden continues over the long course of the disease. This study aimed to provide an overview of the positive and negative impacts of schizophrenia on family caregivers.; Methods: From April to June 2017, two investigators conducted a systematic review and meta-summary of studies obtained from five electronic databases and the footnotes and citations of eligible studies. Qualitative studies that explored the experiences of family caregivers of individuals with schizophrenia were included. Study findings published between 1993 and 2017 were extracted and synthesised using narrative and summative approaches.; Results: After the removal of duplicates, independent reviewers screened 864 records. Subsequently, 46 full-text articles were assessed for eligibility and 23 papers were included in the synthesis. Negative impacts identified were traumatic experiences, loss of expectation of life and health, lack of personal and social resources, uncertainty and unpredictability, family disruption, conflict in interpersonal relationships, difficulty in understanding, and stigma and heredity. Meanwhile, the positive impacts identified were family solidarity, admiration, affirmation, affection, compassion, learning knowledge and skills, self-confidence, personal growth, and appreciation.; Conclusions: Analysis of the studies suggested that family members of individuals with schizophrenia face a series of traumatic situations during the course of the illness. Their subsequent experiences can be conceptualised as a continuous circle of caregiving, in which the positive impacts can be centrally positioned within the negative impacts.

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How to relieve stress in adult child caregivers of the older adults with disabilities: a survey study from the city of Nanjing, China

The care of older adults with disabilities (OADs) in China is mostly provided by their adult offspring. As the population continues to age, carer stress will increase. A survey of 900 adult child caregivers of OADs was conducted in Nanjing City, Jiangsu Province, China, and used to investigate the status and stress levels of caregivers in order to explore effective support for offspring caregivers and suggest improvements to the social care system. Multiple linear regression models were used to examine the effects of coping strategies on carer stress. Caregivers experienced stress at moderate or high levels due to physical, psychological, financial, and work issues. Stress was significantly associated with OADs' health status and self-care ability, and the amount of care time. Caregivers sought help from their families to care for elderly parents, which significantly relieved stress. The purchase of social care services and professional medical services for OADs significantly reduced stress; however, for elderly persons with high self-care ability, the purchase of social care services increased caregiver stress, while government-subsidized family nursing allowances reduced it. It is necessary to focus on the role of family care to stimulate mutual family support, and to integrate society and government support systems.

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Illness perceptions, depression and anxiety in informal carers of persons with depression: a cross-sectional survey

Purpose: To examine the illness perceptions of informal carers of persons with depression, using the theoretical framework of Leventhal's Common-Sense Model (CSM) and to determine whether these illness perceptions are predictors of anxiety and depression, as measures of psychological well-being. Methods: A cross-sectional survey was conducted with 94 Maltese individuals caring for a person with depression within a community setting. The informal carers completed the modified Illness Perception Questionnaire (IPQS-Relatives version) and the Hospital Anxiety and Depression Scale (HADS). Data were analysed using descriptive statistics, Spearman's rank order correlations and ANCOVA regression models, to identify predictors of anxiety and depression respectively in the informal carers. Results: The informal carers perceived depression as a cyclical condition, having negative consequences on both the patient and on themselves. Participants perceived the causes of depression to be mainly psychosocial in nature and generally viewed the treatment as effective. Caring for a person with depression was perceived as having a considerable negative emotional impact on them. Years of caring was identified as a predictor of anxiety accounting for 20.4% of the variance, and timeline chronicity beliefs, consequences (relative) and illness coherence were identified as predictors of depression, accounting for 56.8% of the variance. Conclusion: Illness cognitions are significant predictors of depression, thereby suggesting that cognition-based interventions may be effective in targeting depression in these informal carers. Thus, health professionals should explore the carers' personal understanding of the disease, their timeline beliefs and the perceived consequences of providing care, as they relate to their psychological well-being.

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When chemotherapy fails: Emotionally charged experiences faced by family caregivers of patients with advanced cancer

Objective: To explore family caregivers' emotional experiences while caring for patients with advanced cancer and navigating distressing information, awareness of dying, and difficult decisions. Methods: Qualitative descriptive study of semi-structured interviews with 92 bereaved caregivers of patients with advanced cancer. Interviews explored caregivers' experiences as patients transitioned out of active cancer treatment and neared the end of life. Results:  Included in caregivers' characterization of this transition time were three particularly emotionally charged experiences. The first occurred when caregivers felt jolted into awareness that patients were dying.They were startled to realize that patients would die sooner than expected; some expressed frustration that they had not been adequately warned. In the second, caregivers felt conflicted when involved in decisions that pitted patients' preferences against what caregivers felt patients needed, resulting in ambivalence, guilt, and grief. Thirdly, caregivers who felt they did their best for patients expressed fulfillment and gratitude. Conclusion: Caregivers of patients with advanced cancer face unique, emotionally charged experiences that can lead to distress and affect care at the end of life. Practice Implications: Awareness of these situations may help oncology teams to provide sufficient guidance and support, partner with caregivers to clarify patients' needs, and deliver higher quality care. 

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Years of caregiving for chronically ill and disabled family members is not associated with telomere length in the Philippines

Background Caring for chronically disabled family members is a stressful experience. In turn, psychosocial stress is linked to premature aging. Telomere length (TL) is a plastic genetic trait that is a biomarker of aging, and a possible mechanism linking psychosocial stress and accelerated aging. Methods TL was measured using qPCR method from blood samples in 1233 Filipino adults from Cebu, Philippines. Caregiving was measured as chronicity of care, or the sum total number of years an individual was the primary caregiver for any household member with a chronic illness or disability. Linear regression models were used to test for associations between chronicity of care and TL. Interaction terms were used to test whether or not the association between chronicity of care and TL differed by sex, age, and relationship to the caregiver. Specific statistical designs were publicly pre-registered before analysis began. Results Chronicity of care was not associated with TL. Neither did we find any evidence for caregiving varying in its effect on TL by caregiver sex, age, or relationship to the chronically ill/disabled. Conclusions We found no evidence of an association between chronicity of care and TL. This result coupled with a recent study of a similarly sized cohort suggests that previous significant results linking caregiving and TL may be due to very particular types of caregiving populations or are possibly artifacts of small sample sizes. 

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The experiences and needs of primary family caregivers of patients with multiple myeloma: A qualitative analysis

Background: Family caregivers play a key role in the lives of patients with multiple myeloma. However, very little is known about the impact that the disease (its diagnosis, course and prognosis) has on the main family caregiver.; Aim: To achieve a deeper understanding of the lived experience of individuals who are the primary caregiver of a relative with multiple myeloma and to shed light on their needs.; Design: Interpretative phenomenological study.; Setting and Participants: A total of 12 individuals who were the main family caregivers of a relative with multiple myeloma who was under outpatient follow-up at a cancer unit in Barcelona were recruited via purposive sampling until data saturation was reached. In semi-structured in-depth interviews, participants described their experiences of caring for their relative with multiple myeloma. Interviews were recorded, transcribed and analysed using ATLAS.ti v7.2. The seven steps proposed by Colaizzi were used for data analysis, and the relationships among emerging themes were examined.; Findings: Four main themes emerged: (a) a new life, adapting to the disease, (b) commitment to the patient, (c) the emotional sphere and (d) experiences in relation to the care and support received. The analysis also revealed a core overarching theme: uncertainty.; Conclusion: Primary family caregivers experienced intense uncertainty, and they described a strong need to air their feelings. Specific practical initiatives, targeting both health-related and logistical aspects of care, need to be developed in order to support family caregivers of myeloma patients.

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Correlates of anxiety and depression symptoms among patients and their family caregivers prior to allogeneic hematopoietic cell transplant for hematological malignancies

Purpose: Given the complexities and risks of allogeneic HCT, patients and their family caregivers may experience elevated psychological distress, including symptoms of anxiety and depression, in anticipation of the procedure. Patients and caregivers also bring with them their pre-HCT experiences of diagnosis, prior treatment, and associated burdens, thus potentially compounding their acute distress. Identification of clinical, psychosocial, and sociodemographic factors related to pre-HCT distress would allow targeting of patients and caregivers who may require assistance during the HCT process. Methods: Consecutive patients (n = 111) and their caregivers (n = 110) completed measures of anxiety, depression, cancer distress, perceived threat, perceived control, self-efficacy, relationship quality, and physical quality of life in the week before HCT. Multivariate linear regression analysis was used to identify factors associated with patient and caregiver anxiety or depression, including disease type, donor type, and patient and caregiver sociodemographic, health-related, and psychosocial factors. Results: Family caregivers had higher levels of anxiety and depression symptoms than patients. Thirty percent of caregivers vs. 17% of patients met criteria for clinically significant anxiety and a lesser amount (5% for both) met criteria for clinically significant depression. Patient anxiety was related to younger age (b = - 0.22, p = 0.005) and greater cancer-related distress (b = 0.59, p < 0.001), while caregiver anxiety was related to lower self-efficacy (b = - 0.19, p = 0.011) and greater cancer-related distress (b = 0.58, p < 0.001). Similarly, patient depression was related to lower perceived control (b = - 0.17, p = 0.050), greater cancer-related distress (b = 0.34, p = 0.005), and lower physical functioning (b = - 0.26, p = 0.008), while caregiver depression was related to greater cancer-related distress (b = 0.46, p < 0.001). Conclusions: Family caregivers may be more emotionally vulnerable than patients before HCT and in need of additional assistance. Cancer-related distress was the strongest correlate of anxiety and depression in both patients and caregivers, suggesting that distress related to their cancer experience and its consequences plays a major role in their emotional functioning prior to HCT.

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Intergenerational Ambivalence and Dyadic Strain: Understanding Stress in Family Care Partners of Older Adults

Objectives: The present study used Pearlin, Mullan, Semple & Skaff's (1990) caregiving stress process model as a framework to examine the comparative influence of two stressors: (a) intergenerational ambivalence as a unified construct and (b) dyadic strain, which is one isolated component of intergenerational ambivalence. Methods: Participants were 120 women providing healthcare and medication assistance to an earlier generation family member with physical and/or cognitive impairments. Results: Hierarchical regression confirmed that intergenerational ambivalence explained perceived stress in family care partners, beyond the variance accounted for by other commonly reported stressors such as length of caregiving experience, memory/cognitive and functional impairments of the care recipient, caregiver overload, family conflict and financial strain. Further analyses revealed that examining dyadic strain apart from intergenerational ambivalence may more accurately explain the influence of ambivalence scores on care partners' perceived stress. Conclusions and Clinical Implications: The comparative influence of dyadic strain versus ambivalence suggests that stress-reducing interventions may benefit from a focus on reducing care partners' experiences of negative strain in the dyadic relationship rather than managing ambivalence.

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Health issues and informal caregiving in Europe and Italy

Informal caregivers are the unpaid persons who take care of a not self-sufficient family member, due to old age or chronic illness or disability. As in all the European countries, the demand for informal cares is further increased as a result of the ageing societies and the social and political fallout of informal caregiving is a very current and important issue. We have overviewed some international scientific literature, with the aim of understanding the key research objectives to be firstly pursued to address this problem. In particular, we focused on the psycho-physical health differences in informal caregivers, subjected to long lasting load and prolonged stress, as compared to non caregiver persons. We also underlined the relationship between caregiver health differences and stress, gender type, kind of the care recipient (autism) and social and political situation in Europe and Italy. The collected data indicate the necessity to prevent caregiver psychological and physical health by appropriate laws, especially supporting women, often most involved in care activities.

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Quality of Life and Emotional Strain in Caregivers of Patients with Multiple Sclerosis

Background and Purpose: This study aimed was to measure the quality of life, fatigue, stress, and depression in a consecutive sample of caregivers of multiple sclerosis (MS) patients.; Methods: We included data from 131 consecutive caregivers of MS patients [age=51.2±12.8 years (mean±SD), males=53.4%, duration of caregiving=10.0±6.3 years]. We assessed the quality of life, fatigue, stress, and depression of the caregivers using the 36-item Short Form Health Survey, Krupp Fatigue Severity Scale, Kingston Caregiver Stress Scale, and Hamilton Scale for Depression, respectively. The disability status of the patients was assessed using the Kurtzke Expanded Disability Status Scale. We used linear regression models to identify possible correlations between all of the aforementioned scales, while multivariable logistic regression models were employed to assess the correlations of caregiver fatigue with caregiver characteristics and patient disability.; Results: The linear regression analyses revealed that caregiver fatigue was positively associated with stress and negatively correlated with both physical health status and mental health status. Caregiver stress was positively associated with depression and negatively correlated with both physical health status and mental health status. Depression was negatively correlated with both caregiver physical health status and mental health status. In multivariable logistic regression analysis, caregiver fatigue was found to be independently associated with education status [odds ratio (OR)=0.61, 95% CI=0.37 to 0.99], history of chronic disease (OR=5.52, 95% CI=1.48 to 20.55), other chronic diseases in the family (OR=7.48, 95% CI=1.49 to 37.47), and the disability status of the patient (OR=1.36, 95% CI=1.03 to 1.80).; Conclusions: Fatigue, stress, and depression in caregivers of MS patients are negatively correlated with their physical health status and mental health status. Caregiver fatigue is independently associated with education status, history of chronic disease, other chronic disease in the family, and patient disability.

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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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Current Advances in Palliative & Hospice Care: Problems and Needs of Relatives and Family Caregivers During Palliative and Hospice Care-An Overview of Current Literature

Palliative and hospice care aims to improve quality of life of patients' relatives, but still little is known about their specific problems and needs. We present a comprehensive literature update. Narrative review to present an expert overview of peer-reviewed, English-written original research publications and reviews on psychosocial and existential problems, supportive needs as well as interventions for relatives during the patients' disease trajectory published between January 2017 and November 2018. A total of 64 publications were included. Relatives report high rates of psychological and existential distress, burden and psychological morbidity during the total disease trajectory of the patient. In addition, relatives report an alarmingly high number of unmet needs with information being the central issue. Relatives' problems and needs are part of complex systems influenced by various socio-demographic factors and patient⁻relatives-interactions and dependency between different psychological phenomena. First support interventions for relatives during disease trajectory have proven feasible and secondary data from randomized studies suggest beneficial effects of providing early palliative care also for relatives. Relatives should be addressed to a still larger extent in the daily practice of palliative and hospice care, thus further research to reveal more detailed systematic information is needed to improve relatives' psychological burden and quality of life.

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Risk of Posttraumatic Stress Disorder and Its Relationship With Perceived Social Support Among Family Caregivers of Individuals With Schizophrenia or Bipolar Disorder

A cross-sectional descriptive correlation study was performed to investigate the risk of posttraumatic stress disorder (PTSD) among 300 family caregivers of individuals with schizophrenia or bipolar disorder and examine the relationship between perceived social support and risk of PTSD. The Arabic version of the PTSD Checklist for DSM-5 (APCL-5) was used to investigate risk of PTSD; the Arabic version of the Multidimensional Scale of Perceived Social Support was used to measure perceived social support. Mean score of the APCL-5 was 46.1, indicating risk of PTSD among family caregivers. A negative moderate correlation was found between risk of PTSD and perceived social support. The caring process is demanding and highly stressful, putting family caregivers at risk for PTSD. Social support is crucial in decreasing this risk. [Journal of Psychosocial Nursing and Mental Health Services, xx(x), xx-xx.].; Copyright 2019, SLACK Incorporated.

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Family caregiver descriptions of stopping chemotherapy and end-of-life transitions

Purpose: The purpose of this study was to describe family caregivers' perspectives of the final month of life of patients with advanced cancer, particularly whether and how chemotherapy was discontinued and the effect of clinical decision-making on family caregivers' perceptions of the patient's experience of care at the end of life (EOL). Methods: Qualitative descriptive design using semi-structured interviews collected from 92 family caregivers of patients with end-stage cancer enrolled in a randomized clinical trial. We used a phased approach to data analysis including open coding, focused coding, and within and across analyses. Results: We identified three patterns of transitions characterizing the shift away from active cancer treatment: (1) "We Pretty Much Knew," characterized by explicit discussions about EOL care, seemingly shared understanding about prognosis and seamless transitions from disease-oriented treatment to comfort-oriented care, (2) "Beating the Odds," characterized by explicit discussions about disease-directed treatment and EOL care options, but no shared understanding about prognosis and often chaotic transitions to EOL care, and (3) "Left to Die," characterized by no recall of EOL discussions with transitions to EOL occurring in crisis. Conclusions: As communication and palliative care interventions continue to develop to improve care for patients with advanced cancer, it is imperative that we take into account the different patterns of transition and their unique patient and caregiver needs near the end of life. Our findings reveal considerable, and potentially unwarranted, variation in transitions from active treatment to death.

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Male Caregivers: Shifting roles among family caregivers

BACKGROUND: More than 16 million men in the United States are acting in the role of family caregiver. Men are usually viewed as not being caring simply because they provide care differently than women. However, this is not the case. OBJECTIVES: This article explores male caregiving from the perspective of family and professional roles. METHODS: A review of the literature related to men in the caregiving role was conducted. This review included only men providing care to a family member and was limited to men caring for an adult. FINDINGS: The main traits of male caregivers were defined as masculinization of caregiving behaviors, social support needs, and caregiver role strain/emotional aspects of caring. Men in the caregiving role must be supported. Education related to how men provide care is needed. Hands-on education should also be provided to men in the family caregiving role.

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Identifying and Addressing Family Caregiver Anxiety

Family caregivers are an increasingly diverse group of individuals who provide significant amounts of direct and indirect care for loved ones with long-term chronic illnesses. Caregiver needs are vast, particularly as these relate to the caregiver"s quality of life. However, caregivers are often unlikely to address their personal and health-related concerns. Unmet needs combined with the caregiving role often lead to high levels of caregiver anxiety. Unaddressed, this anxiety is likely to result in poor health and low quality of life. Nurses, along with the health care team, are well positioned to assess, monitor, intervene, and reassess anxiety levels in caregivers using standardized screening tools across care settings. This article focuses on the family caregiver anxiety symptom in community-based settings, where health care providers have unique opportunities to detect this symptom in a familiar environment and begin immediate intervention leading to promotion of quality of life for the caregiver and subsequently the care recipient. Additional research efforts should be focused on health care provider goals of care, dyadic assessments, and monitoring of caregiver needs while caring for their loved ones aging in place.

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Informal caregiving and diurnal patterns of salivary cortisol: Results from the Whitehall II cohort study

The objective was to investigate the relationship between various aspects of informal caregiving and diurnal patterns of salivary cortisol, with special attention to the moderating effect of sex and work status. The study population was composed of 3727 men and women from the British Whitehall II study. Salivary cortisol was measured six times during a weekday. Aspects of caregiving included the relationship of caregiver to recipient, weekly hours of caregiving, and length of caregiving. Diurnal cortisol profiles were assessed using the cortisol awakening response (CAR) and diurnal cortisol slopes. Results showed that men, but not women, providing informal care had a blunted CAR compared with non-caregivers (P Interaction = 0.03). Furthermore, we found a dose-response relationship showing that more weekly hours of informal care was associated with a more blunted CAR for men (P trend = 0.03). Also, the blunted CAR for men was especially pronounced in short-term caregivers and those in paid work. In women, the steepest cortisol slope was seen among those in paid work who provided informal care (P Interaction = 0.01). To conclude, we found different cortisol profiles in male and female informal caregivers. Male caregivers had a blunted CAR, which has previously been associated with chronic stress and burnout. Future research should investigate whether results are generalizable beyond UK citizens with a working history in the civil service.

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Family Caregivers, AIDS Narratives, and the Semiotics of the Bedside in Colm Tóibín's The Blackwater Lightship

This article examines the ways in which Colm Tóibín's The Blackwater Lightship carefully negotiates media discourses on HIV/AIDS and the genre of the AIDS narrative in order to shed new light on the physical and emotional experience of being a family caregiver. The novel elevates the otherwise mundane bed to the status of a symbol that reflects a myriad of unspoken social relations and shows how the daily life of the caregiver challenges their ideals, stretches emotional limits, and heightens interdependency. In reading the complex semiotics of the bedside in the novel, this article reveals the emotional costs of illness. In place of the biomedical focus on cellular decay and tissue damage, interactions at the bedside foreground the social realm of plans abandoned and abilities impaired. As The Blackwater Lightship reveals, bedsides are both real and imagined places of intimacy, care, and connection that are nevertheless fraught and weighted with meaning; they are the site of the complex emotional commitments that bind caregivers and patients together and provide spaces for intimacy, vulnerability, and reflection.

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Preparedness for caregiving: A phenomenological study of the experiences of rural Australian family palliative carers

The care of people with life-limiting illnesses is increasingly moving away from an acute setting into the community. Thus, the caregiver role is growing in significance and complexity. The importance of preparing and supporting family caregivers is well established; however, less is known about the impact of rurality on preparedness and how preparedness shapes the caregiving continuum including bereavement. The aim of this study, conducted in 2017, was to explore how bereaved rural family palliative carers described their preparedness for caregiving. Interpretative phenomenological analysis was employed following semi-structured interviews with four women and six men (N = 10, aged 55-87 years). Participants were recruited voluntarily through past engagement with a Regional Specialist Palliative Care Consultancy Service in Australia. The experiences of caregivers illustrated a lack of preparedness for the role and were characterised by four major themes: Into the unknown, Into the battle, Into the void and Into the good. The unknown was associated with a lack of knowledge and skills, fear, prognostic communication, exclusion, emotional distress and grief experience. Battles were experienced in a number of ways: intrapsychically (existing within the mind), through role conflict and identity; interpersonally with the patient, clinician and family; and systematically (against health, financial and legal systems). The void was felt during isolation in caregiving, in relinquishing the role, in bereavement and in feeling abandoned by service providers. Positive experiences, such as being valued, included and connected to supports, and the fostering of closer relationships and deeper meaning, occurred less frequently but temporarily buffered against negative aspects. Implications from this study for policy and practice centre on the frequent, purposeful and genuine engagement of caregivers. Services and clinicians are encouraged to enhance communication practices, promote meaningful inclusion, address access issues and enhance support at role relinquishment.

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Assessment of caregivers' strain during radiation therapy of head-and-neck cancer patients: An institutional report using modified caregivers' strain index scale

Aims: Very little works have been reported on the issues of burden perceived by the caregivers of head-and-neck cancer (HNC) patients. Job of the caregiver is complex, and it limits their social, psychological, and economical well-being. Our study aims at assessing caregivers' strain during radiation therapy (RT) of HNC patients using the Modified Caregivers' Strain Index (MCSI) Scale. Materials and Methods: In this single-institutional cross-sectional study, we interviewed caregivers of HNC patients undergoing curative RT. Along with MCSI, a 13-point questionnaire, which was self-administered in local languages; we collected baseline data of patients and their caregivers. Scores were evaluated. For each question, score varies 0–2. Higher the Median Hazard Score (H Score), more was the level of the strain. Results: We interviewed 24 participants. Response rate was 100%. About 45.8% of patients were in Stage III. The median age of caregivers was 40 years; 58.3% were male, 79.2% were employed, and 58.3% were belonging to the upper-lower class. Nearly 66.6% were spouse of the patients and 70.8% belong to joint family. In MCSI score analysis, H Score was 22 (range 14) with a minimum score of 14 and maximum score of 26. The most common score was 20. About 65.1% of participants responded Score 2 in all aspects of strain indices. Travel time had a significant positive association with total H Scores (Pearson's r = 0.663, P < 0.05). Conclusion: Majority of the caregivers was suffering from severe physical, personal, emotional, and social/financial strain. This issue must be addressed in holistic cancer care.

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Living on the edge: Family caregivers' experiences of caring for post-stroke family members in China: A qualitative study

Background: Globally, one-third of the 15 million people with stroke suffer permanent physical, cognitive, and emotional impairment. Because of traditional Chinese culture and the limited development of the primary healthcare system, most stroke survivors are cared for and live with their family after hospital discharge. However, previous literature shows a lack of qualitative studies on family caregivers' experience of caring for their relatives in China.; Objectives: The aim of this study was to explore the experience of family caregivers taking care of stroke survivors in China.; Methods: An explorative design was used wherein qualitative semi-structured interviews were conducted with family caregivers in China. Family caregivers were selected from one city and three communities using a purposive sampling method until no new data were generated (n = 26). A thematic analysis was used for the data analysis in this study.; Findings: Family caregivers' experience was described as living on the edge, which pulled their lives in multiple directions, created an unstable situation, and reduced their well-being and health. The participants believed they had total responsibility and felt that this was expected from both themselves and society. Little external understanding and insufficient support was emphasised, resulting in the caregivers feeling all alone, drained by caring, and like prisoners in their own lives. The family caregivers had to face all of the family events and make all of the decisions by themselves. They expressed love for their family members with stroke, but this was often overshadowed by feelings of sadness, depression, sensitivity, and anger. This resulted in an inability to see how things could improve and in the family caregivers being uncertain about the future.; Conclusion: All of these findings increased understanding and added knowledge of this topic that has been seldom studied in China. Healthcare authorities and professionals should recognise and understand the lives and situations of family caregivers since their relatives had a stroke to further identify their difficulties and needs. Appropriate and effective support, both from government and society, should be planned and implemented for family caregivers to relieve them from caring for their relatives with stroke and maintaining the quality of their own lives.

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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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Finding fault: Criticism as a care management strategy and its impact on outcomes for dementia caregivers

Background: Despite a large literature on the stress process, little attention has focused on how caregivers for persons living with dementia (PLWDs) provide care and how this may impact care outcomes. Criticism is a management strategy caregivers may use to respond to behavioral symptoms. We consider whether criticism is associated with caregivers' mental health and service utilization. Methods: Data are drawn from the Advancing Caregiver Training intervention study including 256 informal caregivers living with a PLWD. In multiple linear regressions controlling for caregivers' demographics and PLWDs' clinical factors, we consider criticism (criticism subscale of the Dementia Management Strategies Scale) as a predictor of caregiver burden, depressive symptoms, desire to institutionalize the PLWD, level of frustration with care, and the number of home-based, social, and health services utilized.  Results: On average, 15% of the sample sometimes reported using criticism as a management strategy to manage the challenges of care. Greater use of criticism was associated with significantly more caregiver burden (β = 0.26, P < 0.001) and frustration with caregiving (β = 0.66, P < 0.001), but not depressive symptoms or a desire to institutionalize the PLWD. Criticism was also associated with significantly greater utilization of home-based (β = 0.14, P < 0.05) and social services (β = 0.15, P < 0.05), but not health care services. Conclusion: Criticism appears to be used by more burdened and frustrated caregivers. The association of criticism with social and home-based services potentially reflects a need for greater support among this group of caregivers. Behavioral interventions that can help caregivers manage behavioral symptoms with positive, empirically validated strategies may be helpful.

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Transitioning into the caregiver role following a diagnosis of Alzheimer's disease or related dementia: A scoping review

Objectives: To identify experiences, needs, interventions and outcomes for caregivers of persons with Alzheimer's disease or related dementia as they transition into this new role following diagnosis.; Design: Scoping review of published literature.; Data Sources: A search for published articles was conducted in PsycINFO, Scopus, Ovid and Web of Science databases.; Review Methods: The Arksey and O'Malley methodological framework guided the review. Studies were screened independently for inclusion by two persons. A total of 955 studies, after duplicates removed, were found by the database search. From these, 127 full-text articles were retained through the screening of titles and abstracts by two reviewers. The two reviewers assessed 46 full-text articles for eligibility. The final 29 studies identified caregiver experiences, needs, and interventions during the period following a diagnosis of Alzheimer's disease or related dementia in the scoping review.; Results: Twenty-nine studies were organized around three major categories: i) family caregiver experiences on receiving the diagnosis (n = 23), ii) needs during this time of transition (n = 18), and iii) interventions and outcomes to support their transition into the caregiver role (n = 5). While studies may have addressed more than one topic, 16 studies intersected categories of both caregiver experience and needs, and one study intersected categories of needs and interventions. There were several studies that focused more specifically on the caregiver's initial reactions to a diagnosis of Alzheimer's disease or related dementia (n = 9), the emotional responses to the diagnosis (n = 14), changes in personal relationships and responsibilities with a new role (n = 16). Caregiver needs following the diagnosis included knowledge and information (n = 14), emotional and psychological support (n = 11), and assistance with care planning (n = 7). Five papers examined interventions specifically tailored to caregiver needs at this juncture, which support the transition into the caregiver role.; Conclusions: The time of receiving a diagnosis of Alzheimer's disease or related dementia is a critical period in the process of transitioning into caregiver role. This period marks a new phase in the process of caring by family caregivers. Thus, it is important to fully understand the experiences and needs of caregivers and effective interventions in order to better support their transition into this new role.

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Caring by telecare? A hermeneutic study of experiences among older adults and their family caregivers

Aims and Objectives: To obtain a deeper understanding of the persistent use of telecare for older adults and their family caregivers.; Background: Telecare is seen as part of the solution in home care services for ageing in place. Previous studies have shown that telecare is a complex intervention, and there is still a poor understanding of older adults' and their family caregivers' experience with the use of telecare.; Design: This study used a qualitative hermeneutic research approach.; Method: Interviews were conducted with 18 older adults and follow-up interviews were conducted with 15 participants after 5-6 months of use. In addition, interviews were conducted with seven close family caregivers. The COREQ checklist was used.; Results: The older adults expressed increased safety, security and independence. Although some of them experienced challenges, they continued to use the services. Furthermore, the findings revealed needs that telecare could not cover. Family caregivers reported that telecare eased their concern for a time. However, they felt increased responsibility which led to ambivalent feelings between wanting to comply with the older adults' desire to live at home and the stress and concern this caused.; Conclusion: Telecare does improve care offered by home care services. However, it must be considered in the context of assistance and other measures and be provided in response to each individual's specific needs. Family caregivers may benefit from telecare, but telecare may also add to their care burden.; Relevance To Clinical Practice: There is a need for increased knowledge and information about telecare and for follow-up from home care services. Family caregivers are important for promoting sustainable use, but a support system and better cooperation with home care services is needed.

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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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Facilitators and barriers to supporting individuals with spinal cord injury in the community: experiences of family caregivers and care recipients

Purpose: Family members make an important contribution to informal and formal care, as well as the overall health and wellbeing of individuals with spinal cord injury. Caregiving often results in negative outcomes which, if not addressed, threaten the sustainability of these critical supports. We sought to explore the perceptions of individuals with spinal cord injury and their family caregivers regarding the facilitators and barriers to undertaking and sustaining the caregiving role in the community.; Methods: A qualitative descriptive approach with semi-structured interviews. Thematic analysis was employed to determine key themes arising from individuals with spinal cord injury (n = 19) and their family members' (n = 16) experiences.; Results: The following four facilitators to caregiving were identified: access to community support services, positive coping in relationship, social support, and mastery of caregiving roles. Conversely, the following six barriers to caregiving were identified: lack of access to community resources, lack of knowledge about resources and formal training, fragmented continuity of care, negative coping in relationship, role strain, and caregiver injury or illness.; Conclusions: The current study demonstrated that positive coping, social support, skills training, access to community services and continuity of care contribute significantly to the sustainability of the spinal cord injury family caregiving role. As such, the development of future caregiver interventions should consider these facilitators. Implications for Rehabilitation Family caregivers make an important contribution to the care processes and overall quality of life of individuals with spinal cord injury post-discharge into the community. The potential negative effects of caregiving could threaten the sustainability of these critical supports. Positive coping, social support, skills training, access to community services, and continuity of care contribute significantly to the sustainability of the spinal cord injury family caregiving role. This study shows the need for better integration of family members during the rehabilitation and discharge process to better prepare them for the caregiving role.

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Stress-buffering Effect of Coping Strategies on Interrole Conflict among Family Caregivers of People with Dementia

Objectives: To examine the stress-buffering effect of coping strategies on the adverse effects of interrole conflict on the mental health of employed family caregivers, and clarify the moderating role of attentional control on this stress-buffering effect. Methods: Data were drawn from a two-wave longitudinal online survey of employed Japanese family caregivers of people with dementia (263 males, 116 females; age 51.54 ± 9.07 years). We assessed interrole conflict, coping strategies, attentional control, mental health variables (psychological strain and quality of life), and confounding factors. Results: Hierarchical regression analyses controlled for sociodemographic factors found formal support seeking had a stress-buffering effect for strain- and behavior-based caregiving interfering with work (CIW) only on psychological strain, and was moderated by attentional control. Single slope analysis showed higher CIW was related to higher psychological strain in those with greater use of formal support seeking and lower attentional control, but not in those with higher attentional control. Conclusions: Greater use of formal support seeking weakens the adverse effects of strain- and behavior-based CIW on psychological strain in people with high attentional control. Clinical Implications: Attentional control is a key factor in the stress-buffering effect of formal support seeking on strain- and behavior-based CIW. 

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Responding the "Wrong Way": The Emotion Work of Caring for a Family Member With Dementia

Background and Objectives: Although it is generally acknowledged that the changing behaviors of some people living with dementia can be emotionally exhausting for family members, there has been little research on how carers actually interpret and manage their emotional responses when interacting with persons with dementia in context and over time. Applying the concept of emotion work, this analysis examines when and where carers feel they are responding "the right way" to their kin and when and where they resist normative emotions around family care.; Research Design and Methods: Semi-structured qualitative interviews (N = 20) and diaries (N = 11) were conducted with, and collected from, family carers in Manitoba, Canada to explore how they negotiate their emotions and emotional displays when caring for a family member whose behaviors are changing.; Results: Carers expressed feelings of frustration, anger, and resentment and identified putting on a positive attitude, putting the person with dementia first, protecting the person with dementia, and avoiding conflict and arguing as the "right way" to respond to these feelings. They identified challenges responding the "right way," however, in relation to household chores, and situations that also involved isolation, fear, verbal aggression, and fatigue.; Discussion and Implications: Programs and policies must recognize the complex emotion work of family carers. There is a need for more nuanced education materials, support with household tasks, inclusion of carers' emotional needs in transition planning, and support for carers to exit the caring role when necessary.

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A Qualitative Study on Cancer Care Burden: Experiences of Iranian Family Caregivers

The aim of this study was to explore the experiences of Iranian family caregivers with regard to the burden of caregiving. This is in the context of illuminating and identifying the experiences of family members from different contextual perspectives. In this qualitative study, purposive sampling was conducted in 2016. Data were collected using semistructured interviews and were analyzed using content analysis. Data analysis identified 4 categories and 8 subcategories: (1) burnout (physical problems and psychoemotional stress), (2) role conflict (balancing caring roles and family responsibilities; failure in professional or educational roles), (3) health system tensions (inadequate support from health professionals; ignorance of family members in health structure), and (4) social challenges of cancer (economic burden; taboo of cancer). In conclusion, nurses need to provide individualized support and counseling that address the sources of burden. This highlights the benefit of training health care professionals to provide culturally sensitive support based on family caregivers' needs and circumstances.

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Exploring caregiving-related experiences among Chinese American and European American family caregivers of persons with mental illness

Family caregivers (FCs) of people with mental illness (PMI) experience caregiving-related distress. These challenges tend to be greater for Asian American families due to acculturative stress and structural barriers to services. However, little is known about caregiving-related experiences among FCs of PMI within a cultural context. By using an exploratory approach, we examined the experience of caregiver distress and the influence of cultural values on caregiving in European American and Chinese American FCs. In collaboration with community-based agencies, a combination of convenience and snowball sampling methods were used to recruit Chinese American and European American caregivers who co-reside with PMIs. Two focus groups with each ethnic group with 57 participants (30 Chinese and 27 European American) were conducted. Thematic analysis indicates that FCs experience intense emotions, health/mental health problems, and a negative impact on their personal/social lives. Whereas Chinese American FCs reported shame, lack of knowledge, and over-protectiveness of PMIs, European American FCs reported the need for advocacy on behalf of the PMI. Findings indicate a need for: 1) greater awareness of the caregiving experience on wellbeing of FCs; 2) an understanding of how cultural values may influence caregiver experience; and 3) developing culturally relevant prevention and intervention services that can support FCs from diverse cultural contexts.

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Preliminary investigation of predictors of distress in informal caregivers of patients with delirium superimposed on dementia

Objective: Delirium superimposed on dementia (DSD) is common and associated with adverse outcomes. Current evidence indicates that some patients with dementia may recall delirium with distress for them and their caregivers. The aim of this study is to identify predictors of distress in informal caregivers of older patient with DSD.; Methods: A total of 33 caregivers of 33 patients with DSD were interviewed 3 days after the resolution of delirium (T0) and at 1-month follow-up (T1) to describe their level of distress related to the delirium episode. A linear regression was used to identify predictors of caregivers' distress at T0 and T1 defined a priori: age, sex, level of education, employment status, delirium subtypes, delirium severity, type and severity of dementia, and the time spent with the patient during the delirium episode.; Results: Caregivers were mostly female (81%), 59 (± 13.0) years old on average. The predictors of distress at T0 were the patient's severity of both dementia and delirium. Moderate dementia was associated with lower distress, whereas higher delirium severity was associated with greater distress. At 1-month follow-up, the predictors of distress were the age of caregiver and time spent in care; the distress level was higher when caregivers were older, and they spent less time with their loved one.; Conclusions: These preliminary findings underline the importance of providing continuous training and support for the caregivers, especially in coping strategies, in order to improve the care of DSD patients and prevent the caregivers' distress in long time period.

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Experiences and support needs of older carers: A focus group study of perceptions from the voluntary and statutory sectors

Objectives: Older informal carers play a vital, growing role in supporting others with long-term health conditions but their support needs and experiences are poorly understood. The aim of this study was to explore the perceptions of volunteers and professionals of the experiences and support needs of older carers (aged 70+ years). Methods: Thirty-five volunteers and professionals working with older carers in the voluntary and statutory sectors participated in a series of focus groups in outer London, United Kingdom. Groups were audio recorded, transcribed and subjected to thematic analysis Findings: Five main themes were identified. These included participants' perceptions of older carers' ambivalence about asking for support, their multiple losses, often restricted lives, social isolation and loneliness and concerns for their loved ones when they can no longer care. Overall, these themes are similar to those reported for adult carers in general but older carers' experiences were regarded as more challenging primarily because of their pride, attitudes to caring and because of their age, their own health was often declining making the physical aspects of caring and leaving their homes more difficult. Concerns about the future are thought to be particularly important for older carers of adult children with disabilities because they expect to be outlived by their children, although similar concerns were voiced by spouses of partners living with dementia. Conclusions: Professionals and volunteers need to consider these additional challenges for older carers. Support with accessing services, for example from the voluntary sector, is important as is future exploration of how to support older carers in planning for the future care for their loved ones is needed. 

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"Death Lay Here on the Sofa": Reflections of Young Adults on Their Experience as Caregivers of Parents Who Died of Cancer at Home

The prevalence of terminally ill patients, who die at home, is increasing. The aim of this study was to address the meaning of being young adults, who were the caregivers of their dying parents. In-depth, semistructured interviews were conducted with 14 Israeli Jewish young adults, who had been the primary caregivers for parents who had cancer and eventually died at home. Three themes emerged: (a) "I was Chosen and was led into that situation": modes of taking on and performing the role of a caregiver, (b) "My life was on hold": the experience of performing the caregiving role, and (c) "I underwent . . . the real school of life": caring for the dying parent as an imprint on self-development. Participants integrated compassionate caring into their identity, reflecting an empowering encounter of young carers with their dying parents as a process of growth in the face of harsh, stressful experiences. 

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Telephone interventions, delivered by healthcare professionals, for providing education and psychosocial support for informal caregivers of adults with diagnosed illnesses

Plain language summary

Background Caregivers providing care to a family member, friend, or neighbour experience the role in differing ways. Some caregivers may find themselves in a caring role for which they are ill prepared and professional support is essential. This review examined whether telephone support interventions delivered by healthcare professionals had positive benefits on a range of outcomes including quality of life, burden (the experience of strain or load), skill acquisition (e.g. problem‐solving), psychological health (e.g. depression), knowledge, physical health, family functioning, satisfaction, or cost, for unpaid caregivers in the community. A telephone support intervention is one that is delivered via the telephone and designed to provide knowledge, advice, or help to caregivers to enable them to manage their own well‐being or that of the person they care for. It is an easily accessible method of providing support irrespective of geographical location. Studies that compared telephone support to usual care or to non‐telephone‐based professional support interventions were included.

Study characteristics We included 21 studies involving 1,690 caregivers caring for persons with a range of diagnosed conditions. Caregiver ages ranged from 19 years to 87 years. Most were female and caring for a family member. The majority were spouses, in particular wives, except for one study that mainly focused on adult children. Most caregivers had greater than secondary school education. Eighteen studies reported funding from reputable sources.

Key results Nineteen studies (18 studies contributing data) compared telephone support interventions and usual care. Telephone support interventions probably have little or no effect on caregiver quality of life (4 studies, 364 caregivers) and may have little effect on burden (9 studies, 788 caregivers) compared to usual care on completion of the intervention. Although anxiety may be slightly reduced and preparedness to care slightly improved following the intervention, we are uncertain about the effects on depression and overall, telephone interventions may have little or no effect on the outcomes assessed by this review. High satisfaction with the intervention was reported in six studies that measured this outcome, but no comparative data from usual care groups was reported. Two studies compared telephone and non‐telephone‐based support interventions. There may be little or no evidence of an effect of telephone support when compared non‐telephone‐based support interventions for any reported outcome. No adverse events were measured or reported in any of the included studies.

Quality of evidence The quality of the evidence was assessed as very low to moderate across outcomes, thus reducing confidence in the findings. Many of the results were based on data from single studies with few participants. Larger well‐designed studies are required to determine the effects of telephone support interventions.

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Ethical challenges in primary care: a focus group study with general practitioners, nurses and informal caregivers

Background: General practitioners (GPs), nurses and informal caregivers are often jointly involved in healthcare situations in which ethical issues play an important role.; Objectives: To describe ethical problems from the perspective of these three groups and to investigate whether there is a common experience of ethical issues in primary care.; Methods: We conducted six focus groups with general practitioners, nurses and informal caregivers in Germany. We asked the participants to describe at least one experience of ethical problem in detail and documented the findings by an illustration software that visualized and structured the discussion. We used thematic analysis to identify ethical problems and to develop categories of ethical issues.; Results: Problems reported barely overlapped. GPs had to do mainly with uncertainty about the scope and limits of their responsibility for patients. Nurses were concerned about bureaucratic and other barriers to professional care and about dual loyalty if they had to consider the conflicting interests of patients and family members. They often felt powerless and unable to act according to their professional standards. Informal caregivers reported problems that resulted from role strain and being both a family member and a caregiver. GPs, nurses and informal caregivers sometimes perceived the other parties as a source of ethical problems.; Conclusions: All parties may benefit from ethics support services, a rarity in German primary care so far. Furthermore, nurses' self-confidence towards GPs, demanding patients and family members has to be strengthened. Informal caregivers, the most vulnerable group, need more attendance and tailored support.

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Informal caregiving experiences in posttraumatic stress disorder: A content analysis of an online community

This study explored the experiences of individuals who self‐identify as providing support to a friend, family member, or significant other with posttraumatic stress disorder (PTSD). We analyzed and coded a total of 345 posts from an online support forum, with reference to 13 categories (finances, life interference, venting/emotional expression, maltreatment, sexual behavior, distress, prevented expression, physical health, communication, no personal space, isolation, and compassion fatigue). Categories for coding were established a priori and based on previous literature about caregiving and supporting. Results suggested that informal PTSD caregivers experience concerns involving interpersonal relations, emotional turmoil, and barriers to care for themselves and the individual they are caring for. This study provides a preliminary examination of the experiences and concerns of PTSD caregivers. Implications and suggestions for future research are discussed. 

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Effect of family intervention on family caregivers' burden, depression, anxiety and stress among relatives of depressed patients

Background: Depression is a major psychiatric disorder worldwide. It is a leading cause of individual disability and family burden worldwide. The aim of the study: the aim of this study was to investigate the effect of family intervention on caregivers' burden, depression, anxiety and stress among relatives of depressed patients. Subjects and method: A quasi-experimental design was conducted at the inpatient and outpatient Psychiatric Department Mansoura University Hospital, Egypt. Ninety five families participated in this study (n = 95). Pre-tests and post-tests (n = 95), and test 3 months after intervention were conducted on eighty six (n = 86). The caregivers were divided into ten groups, which ranged from 8 to 10 caregivers in each group; each group attended 12 sessions. A structured interview questionnaire for personal data for patients and their caregiver, Caregiver Burden scale, quality of life scale (QOL) and Depression, Anxiety and Stress Scale-21 items (DASS-21) were used to collect data. Results: The findings of the study indicate that caregivers' burden, depression, anxiety and Stress level significantly reduced, and quality of life significantly improved after implementation of family intervention. There is a negative correlation between QOL and Caregivers' burden, and their feeling of depression, anxiety and stress, while there was a positive correlation between caregivers' burden and their feeling of depression, anxiety and stress. Conclusions: Based on the current results, it can be concluded that caregivers' burden, |depression, anxiety and stress are highly prevalent among caregivers of patients with depression and significantly improved after implementation of family intervention one month after, moreover it slightly decreased three months after intervention. This conclusion leads to accept the hypothesis of the study that family interventions improve the caregivers' burden, QOL, and feelings of depression, anxiety and stress. Further research is needed to follow the intervention 6 and 12 months after family intervention.

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Sense of coherence, burden and mental health in caregiving: A systematic review and meta-analysis

Background: Informal caregiving is associated with a number of negative effects on carers' physical and psychological well-being. The salutogenic theory argues that sense of coherence (SOC) is an important factor in psychological adjustment to stress. The main aim of this study was to systematically review current evidence on the association between SOC, burden and mental health outcomes in informal carers. Method: A systematic search was carried out up to September 2017 in the following databases: PubMed, CINAHL (EBSCO), PsychInfo (OVID) and Scopus. Studies were included if they evaluated the relationship between sense of coherence and subjective caregiver burden and/or mental health outcomes, specifically symptoms of depression and anxiety. Meta-analyses were performed and subgroup analyses were carried out to explore if methodological factors influenced findings. Results: Thirty-five studies were included in the meta-analysis, which provided 40 independent samples with 22 independent comparisons for subjective caregiver burden, 26 for symptoms of depression and 7 for symptoms of anxiety. Higher levels of SOC were associated with lower levels of subjective caregiver burden and better mental health outcomes. Publication bias did not change the estimate of the effect. Limitations: Most of the studies included in this review were cross-sectional. Conclusions: Findings suggest that SOC is an important determinant of carer well-being and may protect carers from high levels of psychological distress and caregiver burden.

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The impact of social-emotional context in chronic cancer pain: patient-caregiver reverberations : Social-emotional context in chronic cancer pain

Purpose: Pain is a multifactorial and subjective experience. Psychological and social factors can modulate it. This study analyzed whether and how prolonged cancer pain is related to the social-relational environment's characteristics. Specifically, we investigated whether the caregiver's emotional support, his/her compassion ability or, on the contrary, his/her personal distress, associates with the patient's pain level. Methods: The sample consisted of 38 cancer patients suffering from pain and 38 family caregivers. The patients completed the McGill Pain Questionnaire (MPQ), the Balanced Emotional Empathy Scale (BEES) referred to caregiver, and an interview concerning the patient's perception of the caregiver's compassion level. Caregivers completed the distress thermometer (DT), the BEES, and an interview assessment of their compassion level. Results: Caregiver's distress level correlated with patient's pain intensity (r = .389; p = .028). Exploratory linear regression confirmed this association (R2 = .151; F (1, 30) = 5.33; p = .028; β = 0.389). The number of problems reported by caregivers correlated with the patients' pain level (r = .375; p = .020), which was verified in a regression analysis (R2 = .140; F (1, 36) = 5.88; p = .020; β = 0.375). In particular, the caregiver's amount of emotional problems was related to patient's pain level (r = .427; p = .007); this result was reaffirmed in a regression (R2 = .182; F (1, 36) = 8.03; p = .007; β = 0.427). Conclusions: Our results show an association between social suffering, as indicated by the caregiver's emotional distress and the patient's physical pain. The results also highlight high distress levels and emotional problems among caregivers. The work emphasizes the need of a bio-psychosocial approach in managing cancer pain, along with the necessity to find effective interventions to fight emotional distress in family caregivers. The recovery of the caregivers' emotional resources could have beneficial implications on the patients' pain.

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The Experience of Adult Children Caregiving for Aging Parents

When the normal progression of life for an aging person is interrupted by a decline in physical and or mental abilities, adult children are often suddenly faced with assuming care of their parent(s). Currently, adult child caregivers of aging parents work up to 100 hours per month at caregiving. Most existing literature is focused on informal caregivers, which can consist of spouses, relatives, and friends' caregiving for persons with debilitating illnesses. Despite the amount of time dedicated to parental caregiving, little is known about the experience of this exclusive caregiver group. The aim of this study was to explore and describe the experience of adult children caregiving for aging parents at any stage of health. A qualitative phenomenological approach was used to interview six daughters and one daughter-in-law. Themes were identified and presented through the use of narratives and poetry. The participants expressed they felt unprepared for caregiving and their culture had a direct impact on the expectations of caregiving. A myriad of unpleasant emotions and loss were voiced, yet their outlooks remained extremely positive. The overall health of adult child caregivers needs to be supported to prepare them for what lies ahead with caregiving. Caregivers report their loved one(s) required several hospitalizations, which lead to performing medical/nursing tasks at home. Nursing then has a unique opportunity during discharge preparation, to identify those who need community, state, and faith-based services. Replication is needed to address the limitation of the number of participants, ethnic, and gender diversity. 

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Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Establishing the Reliability and Validity of PROMIS Fatigue and Sleep Disturbance Item Banks

Objective To examine the reliability and validity of Patient-Reported Outcomes Measurement Information System (PROMIS) measures of sleep disturbance and fatigue in traumatic brain injury (TBI) caregivers and to determine the severity of fatigue and sleep disturbance in these caregivers. Design Cross-sectional survey data collected through an online data capture platform. Setting A total of 4 rehabilitation hospitals and Walter Reed National Military Medical Center. Participants Caregivers (N=560) of civilians (n=344) and service member/veterans (SMVs) (n=216) with TBI. Intervention Not applicable. Main Outcome Measures PROMIS sleep and fatigue measures administered as both computerized adaptive tests (CATs) and 4-item short forms (SFs). Results For both samples, floor and ceiling effects for the PROMIS measures were low (<11%), internal consistency was very good (all α≥0.80), and test-retest reliability was acceptable (all r ≥0.70 except for the fatigue CAT in the SMV sample r =0.63). Convergent validity was supported by moderate correlations between the PROMIS and related measures. Discriminant validity was supported by low correlations between PROMIS measures and measures of dissimilar constructs. PROMIS scores indicated significantly worse sleep and fatigue for those caring for someone with high levels versus low levels of impairment. Conclusions Findings support the reliability and validity of the PROMIS CAT and SF measures of sleep disturbance and fatigue in caregivers of civilians and SMVs with TBI. Highlights • The Patient-Reported Outcomes Measurement Information System (PROMIS) sleep and fatigue measures are both reliable and valid. • The PROMIS sleep and fatigue measures are clinically relevant for caregivers. • Caregivers of persons with brain injury have problems with sleep and fatigue.

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The unmet needs of family members of patients with progressive neurological disease in the Czech Republic

Background: Caring for patients with a progressive neurological disease (PND) causes stress that may impact on the state of health as well as the quality of life of the caring family. Objective: The aim of the study was to explore the unmet needs of the family members of patients with PND in advanced stages. Methods: Grounded theory (constructivist approach) was used to conceptualize the patterns of unmet care needs. Data collection methodology involved focus groups (n = 4) and interviews, in which a total of 52 people participated (patients, family members, and professionals). Results: Based on the data analysis, three domains (family situation, role of the caregiver, and professional help) were identified, which illustrate the unmet needs. In particular, lack of information about the disease and available support available resulted in a deterioration mutual understanding between the patient, family, and the medical staff; also increased stress for the caregiver, and lowered quality of life for the caring family. Conclusion: Family members expect health workers to provide them with support, which includes informing them about the possible help available from the health and social welfare systems.

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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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"A Fine Line That We Walk Every Day": Self-Care Approaches Used by Family Caregivers of Persons with Dementia

Individuals living with Alzheimer's disease and related dementias (ADRD) often exhibit behavioral and psychological symptoms of distress that can contribute to the strain experienced by their family caregivers. This strain can increase levels of stress for family caregivers and reduce quality of life, which can have a negative impact on physical health and wellbeing for both the caregiver and the person with ADRD. This study used blogs written by family caregivers of persons with ADRD to explore self-care strategies practiced by these caregivers. Using a qualitative thematic analysis, seven themes related to self-care approaches used by caregivers of persons with ADRD were identified: (1) health and wellness; (2) altruism and activism; (3) reminiscing and legacy building; (4) social support; (5) information exchange; (6) organization and planning; and (7) spirituality. By understanding the ways in which caregivers for someone with ADRD practice self-care, interventions and services can be developed in an effort to improve caregiver quality of life.

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"Like Death is Near": Expressions of Suicidal and Homicidal Ideation in the Blog Posts of Family Caregivers of People with Dementia

Background: The challenges of providing care for someone with Alzheimer's disease and related dementias (ADRD) have been associated with increased stress, poor mental and physical health, social isolation, and financial distress. More recently, caregiving has been associated with high rates of suicidal and homicidal ideation, but the research on these phenomena is limited. The present study analyzed a sample of blogs written by family caregivers of people with ADRD to explore thoughts of suicide and homicide expressed by these caregivers. Methods: Blogs written by self-identified informal caregivers of people with ADRD were identified using a systematic search method and data were analyzed using a qualitative thematic analysis. Results: Five themes related to thoughts of suicide and homicide by caregivers and people with ADRD were derived from the analysis: (1) end-of-life care; (2) thoughts of death and euthanasia by the person with ADRD; (3) surrogate decision making; (4) thoughts of suicide by the caregiver; and (5) thoughts of homicide and euthanasia by the caregiver. Conclusions: The results capture the reality of suicidal and homicidal thoughts among family caregivers of people with ADRD, supporting calls for more research on these complex topics and highlighting the need for changes to clinical practice to prevent thoughts from becoming behaviors or actions.

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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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Factors associated with high psychological distress in primary carers of people with disability

Background: Primary caregivers of people with disability provide extensive physically and emotionally demanding care.  Objectives: The aim of this study was to quantify the burden of high psychological distress in primary carers of people with disability and identify modifiable factors in relation to high psychological distress. Methods: The 2015 national 'Survey of Disability, Ageing and Carers in Australia' was used to derive a nationally representative sample and estimate weighted prevalence rates of high psychological distress (Kessler scores >=22) in primary carers of people with disability. Risk factors were evaluated using weighted logistic regression models with lasso techniques. Results: Approximately 27% of carers had high psychological distress. Nearly half of the study population reported changes in their health and wellbeing. A delay in general practitioner (GP) visits was common and associated with >2-fold increase in risk of high psychological distress. Discussion: The findings suggest targets for early diagnosis and intervention, and adequate referrals from GPs to meet the health needs of carers.

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Does Caregiving Strain Increase as Patients With and Without Dementia Approach the End of Life?

Context. Family caregivers play critical and demanding roles in the care of persons with dementia through the end of life. Objectives. The objective of this study was to determine whether caregiving strain increases for dementia caregivers as older adults approach the end of life, and secondarily, whether this association differs for nondementia caregivers. Methods. Participants included a nationally representative sample of community-living older adults receiving help with self-care or indoor mobility and their primary caregivers (3422 dyads). Older adults' death within 12 months of survey was assessed from linked Medicare enrollment files. Multivariable logistic regression was used to assess the association between dementia and end-of-life status and a composite measure of caregiving strain (range: 0–9, using a cut point of 5 to define “high” strain) after comprehensively adjusting for other older adult and caregiver factors. Results. The prevalence of dementia in our sample was 30.1%; 13.2% of the sample died within 12 months. The proportion of caregivers who experienced high strain ranged from a low of 13.5% among nondementia, non–end-of-life caregivers to a high of 35.0% among dementia caregivers of older adults who died within 12 months. Among dementia caregivers, the odds of high caregiving strain were nearly twice as high (aOR = 1.94, 95% CI: 1.10–3.45) for those who were assisting older adults nearing end of life. Among nondementia caregivers, providing care near the end of life was not associated with high strain. Conclusion. Increased strain toward the end of life is particularly notable for dementia caregivers. Interventions are needed to address the needs of this population.

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Male Caregivers Report Problems in Caring at Home After Spouses Survive Stroke

Stroke is sudden and often traumatic with results that affect both the patient and family members who provide care. Approximately 40% of individuals caring for family members/friends are male. Transitioning from the noncaregiver role to caregiver can be unsettling. Guided by Friedemann's framework of systemic organization, this secondary data analysis examined problems reported by men caring for spouses in the first year after stroke. Using a mixed methods design, 73 caregivers (CGs) participated in bimonthly telephone interviews for 1 year. For this analysis, only the males caring for spouses (n = 12 married and n = 1 unmarried partner) were examined. These data were analyzed using Colaizzi's rigorous method of content analysis. Five problem themes emerged: 1) adjusting to multitasking in everyday living (Friedemann's system maintenance and individuation), 2) recognizing physical and mental disabilities (coherence), 3) dealing with outside forces and limited resources (individuation), 4) struggling to return to normal (system maintenance), and 5) feeling physically, mentally, and emotionally exhausted (system maintenance). These problem themes demonstrated incongruence as the men sought to maintain their prior lives. Theory-based themes of male stroke CGs' problems were uncovered that can be used to target interventions to help them achieve balance between incongruence and congruence in their lives.

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A qualitative study of older informal carers’ experiences and perceptions of their caring role

Background and aims: Unpaid family carers, or caregivers as they are also known, often play a vital role in supporting others with illness or disability living in the community. Overall numbers of carers are growing but numbers of older carers are increasing particularly rapidly as populations age worldwide. However, little research has focused on this important older group. This qualitative study therefore investigated older carers’ experiences and their perceptions of their role. Methods: Five digitally recorded focus groups with carers from Greater London were undertaken. Recordings were transcribed and analysed thematically. Findings: Forty-four carers aged 70–87 years participated. Most were female and two-thirds were spouses or partners. Overall, the carers thought their experiences were similar to those of younger adult carers and included both satisfying and challenging facets. However, they thought that some of the more negative aspects of the role were more difficult for older carers. Their own declining physical and emotional health and strength were seen as making it harder to access support and maintain social contacts. Loneliness both outside and within relationships featured prominently and was perceived as especially significant for housebound carers and when caring for someone with dementia. Many of these older carers also worried about the future when they might no longer be able to be a carer due to their own ill-health or death. Conclusions: Older carers find their role challenging and future investigations should focus on identifying means of reducing their isolation and supporting them with planning for the future. 

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Qualitative analysis of the experience of patients with schizophrenia’ family caregivers at different stages of disease progression

Background: Caregivers play a crucial role in the clinical evolution of patients with schizophrenia. In order to optimize their support, it is necessary to adjust it according to the phase and severity of the patient's illness. However, little interest has been given in the experience of family caregivers as a function on disease progression. Objectives: The objective of this study was to explore the experiences of family caregivers of patients with schizophrenia at different stages of the disease. Materials and methods: Twelve family caregivers of schizophrenia patients at different stages of the disease e.g. First Psychotic Episode (n = 4), Relapse (n = 4), and Remission (n = 4) participated in the study. Each caregiver was interviewed for about an hour by a psychologist (the same for all) using an interview guide. This interview guide included key themes highlighted in the literature: family burden, stigma, potential gains in caregiving, and ways to cope with the disease. After retranscription, the research interviews were analyzed with the Alceste method in order to help reading and systematizing the data. Results: The qualitative analysis allowed to emerge representations, emotions and practices characteristic of each group. Thus, the interviews with the caregivers of the group First Psychotic Episode were marked by the confrontation with the psychiatric institution. This world was frightening for them: firstly because it was foreign, but also because the representations they associated with schizophrenia were often marked by stigmatization. Hence the shock of the diagnostic announcement, the pain related to the awareness of the disorder of their close relative and the worry about a future that has just darkened. In the Relapse group, caregivers expressed despair and disappointment about the new hospitalization of their relative. Some also expressed anger, often directed against the mental health care system, especially when the subjects didn't feel heard in their request. Finally, the speech of the caregivers of the Remission group showed a reconstruction process: the family go back to its daily life, not “despite” but “with” the patient's disease and its consequences. A new balance had been established, including better relations with their close relative with schizophrenia. The caregivers’ speech in the latter group also included some key components of the recovery process, such as accepting the mental illness, seeing it positively, perceiving gains related to illness and caregiving, and hope for the future. The clinical implications of these results are discussed. In particular, ideas for improving the caregivers’ support in psychiatric emergency units are proposed. Conclusions: The data collected in this study provide valuable insights into the experiences of those who “live with” a close relative with schizophrenia. Moreover, these data indicate that families would also experience a subjective recovery process comparable to that described in the literature on schizophrenia. In addition to its exploratory aspect, the results of this study suggest supportive strategies adapted to the concerns of families at different stages of the evolution of the patient's illness. 

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Rob Lowe: Who Cares for the Carer? | Opinion

In January 2018, President Donald Trump signed the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act, a law that directs Secretary of Health and Human Services Alex Azar to develop and maintain a strategy to support caregivers in the next 18 months. According to the initiative, nearly a quarter of the 3,516 unpaid caregivers they surveyed in 2017 said their careers had suffered because of caring for a family member. When you get on an airplane, the crew says, "Secure your own mask first before helping others." Because without you taking care of yourself, you can't take care of anybody else.

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Chronic Stress, Social Isolation, and Perceived Loneliness in Dementia Caregivers

Caregivers of individuals with dementia are at risk for chronic stress and social isolation. These exogenous factors may lead to perceived stress and perceived loneliness—psychosocial endogenous (subjective) elements of caregiving experience. Chronic stress and perceived loneliness may disrupt neuroendocrine and neuroimmunological regulation, creating low-grade systemic inflammation, promoting proinflammatory gene expression, and expediting cellular aging (endogenous physiological factors). These disturbances may enhance caregivers' risk for chronic conditions of inflammatory pathogenesis. Thus, caregivers' perceived stress and perceived loneliness may form a symptom cluster that can serve as a marker of risks for physical and mental illness. Due to the overwhelming reliance on family caregivers within the increasing population of individuals with dementia, it is essential that clinicians inquire about caregivers' perceived stress and perceived loneliness, are competent in supporting and educating caregivers, and are knowledgeable about specific resources for caregivers.

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Strain and Satisfaction in Caregivers of Veterans With Type 2 Diabetes

Purpose The purpose of this study was to identify predictors of informal caregiver strain and satisfaction associated with caring for veterans with type 2 diabetes (T2DM). Methods This study is a secondary analysis of data from 2 prior studies of caregiving in the Veterans Health Administration. The original studies used a telephone survey to examine veteran and caregiver (CG) characteristics associated with caregivers’ responses to caregiving. The data reported here include 202 veterans with T2DM and 202 caregivers. Linear regression models were generated alternatively using forward and backward selection of veteran and caregiver characteristics. Results Higher caregiver strain was associated with the CG providing activities of daily living assistance, CG receiving less help from friends and relatives and use of unpaid help, CG use of coping strategies, and CG depression scores. Predictors of CG satisfaction included better relationship quality with the veteran and receipt of social support. Conclusions The important role of family and friends in supporting patients with T2DM is widely accepted. Clinicians may engage the caregiver when there is inadequate self-care by the patient. However, less attention has been focused on the effect of caregiving on the caregiver. Greater attention needs to be focused on in-depth exploration of family needs to design and test effective interventions to meet these needs.

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On the road and away from home: a systematic review of the travel experiences of cancer patients and their families

Purpose: Traveling for cancer care is difficult as patients might be suffering from the side effects of treatment, need to cover additional costs, and face disruption of daily life. The aim of this review was to synthesize the evidence on travel needs and experiences during cancer treatment from the point of view of patients and their families.; Methods: This is a systematic review of the literature. The PRISMA statement was used to guide the reporting of the methods and findings. We searched for peer-reviewed articles in MEDLINE, CINAHL PLUS, and Web of Science and selected articles based on the following criteria: focused on patients and their families; presented findings from empirical studies; and examined travel and transport experiences for cancer screening, treatment, and related care. The MMAT was used to assess the quality of the studies.; Results: A total of 16 articles were included in the review. Most of the studies used a qualitative design, were carried out in high-income countries and were conducted more than 10 years ago. Several problems were reported regarding travel and relocation: social and physical demands of transport, travel, and relocation; life disruption and loss of daily routines; financial impact; and anxieties and support needs when returning home.; Conclusions: Patients and carers consistently reported lack of support when traveling, relocating, and returning home. Future research needs to explore patient experiences under current treatment protocols and healthcare delivery models, in a wider range of geographical contexts, and different stages of the patient pathway.

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Caregiving to Older Adults: Determinants of Informal Caregivers’ Subjective Well-being and Formal and Informal Support as Alleviating Conditions

Objectives In response to concerns about the sustainability of health care systems that increasingly rely on informal care, we first investigate explanations of informal caregivers’ subjective well-being: primary stressors (care-receivers’ cognitive impairment, functional disability, and problem behavior), primary appraisal (hours of informal caregiving), and secondary appraisal (burden). Second, we investigate the extent that formal (professional home care) and informal support (from other caregivers/volunteers and from family/friends) alleviate well-being losses due to informal care provision. We modified the stress–appraisal model to explicitly include buffering effects of support. Method We analyzed 4,717 dyads of Dutch informal caregivers and their older care-receivers from the Older Persons and Informal Caregivers Survey Minimum DataSet with multilevel techniques. Results Caregivers’ subjective well-being was directly correlated with burden, hours of informal caregiving, and problem behavior of care-receivers. It was indirectly correlated with care-receivers’ cognitive impairment and functional disability. Formal and informal support weakened the positive relationship between primary stressors and caregiving hours. Discussion Modification of the stress–appraisal model appears useful as it identifies which sources of support buffer at which stages of the stress process. Findings suggest that cutbacks in formal/professional care may aggravate negative well-being outcomes of informal caregiving and compromise informal caregivers’ labor market participation.

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Distress in informal carers of the elderly in New Zealand

Aims: Informal care, which is unpaid and often provided by family and friends, is the primary source of aged care in New Zealand. In addition to financial costs there are known psychological costs of being a carer, including poor mental health.; Methods: This research aimed to interview a group of New Zealand carers and describe their rates of depression and anxiety, their motivations for providing care, costs of care and their experience of aggression. Interviews used standardised questions and were conducted over the phone.; Results: Results are reported from interviews of 48 carers and suggest this group have elevated symptoms of depression and anxiety. Most of the carers are partners or children of the carees and likely do the caring out of love. Unpaid family carers experience low levels of aggression. Carers reported personal and social restriction, and physical and emotional health the most burdensome aspect of being a carer.; Conclusions: Carers of the elderly in New Zealand show elevated levels of distress. Higher levels of emotional support are needed for New Zealand carers. If the health system continues to rely on unpaid carers more should be done to support them.

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Caregiver correlates of patient-initiated violence in early psychosis

Patient-initiated violence may pose a significant risk to the strength and longevity of informal caregiving relationships in psychosis. We aimed to assess caregiver reports of patient-initiated violence in early psychosis and to examine the relationship between violent incidents and appraisals of caregiving, perceived mental wellbeing in caregivers and Expressed Emotion (EE) in the caregiving relationship. Eighty psychosis caregivers were recruited via Early Intervention (EI) psychosis services in London, United Kingdom. Caregivers were questioned about their experiences of patient-initiated violence during the semi-structured Camberwell Family Interview, and completed the Experience of Caregiving Inventory and the RAND SF-36 health survey in a cross-sectional experimental design. One third of the sample reported at least one incident of patient-initiated violence. Reports of violence were associated with poorer mental wellbeing scores amongst caregivers and more negative appraisals of caregiving. Patient-initiated violence also correlated with greater criticism and hostility expressed towards patients, and a rating of high EE in caregiver reports. The results underscore the need to ask explicitly and routinely about the physical safety of caregivers looking after someone with psychosis. Families should be directed towards appropriate interventions to help manage any risk of violence and the likely negative impact on the caregiving relationship.

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Neuropsychological consequences of chronic stress: the case of informal caregivers

Introduction: Caring for a family member with a long-term illness is a significant source of chronic stress that might significantly accelerate the cognitive ageing of informal caregivers. Nevertheless, the absence of a defined theoretical body of literature on the neuropsychology of this population makes it difficult to understand what the characteristic neuropsychological deficits of these caregivers are.; Aims: The main aim of this study is to carry out a systematic review of studies of cognitive deficits present in informal caregivers of people with several chronic pathologies, and analyse the effects of cognitive-behavioural interventions on caregivers' cognition.; Methods: The scientific literature was reviewed following the PRISMA quality criteria for reviews using the following digital databases: PubMEd, PsycINFO, and Dialnet.; Results: Identification of 2046 abstracts and retrieval of 211 full texts led to the inclusion of 38 papers. The studies showed heterogeneous results, but most of the cross-sectional studies reviewed that employed neuropsychological assessments concluded that informal caregivers reported a generalized cognitive deterioration, especially memory dysfunctions (i.e. learning verbal, visuospatial, and digit information). Moreover, they also presented low selective attention and capacity for inhibition, along with slow processing speed. Longitudinal studies confirmed that caregivers whose care situation was more prolonged showed a marked deterioration in their overall cognitive state, memory, processing speed, and vocabulary richness. However, although the patient's death does not seem to reverse the neuropsychological alterations in caregivers, cognitive-behavioural interventions that employ techniques to reduce stress levels, cognitive biases, and inadequate adaptation schemas seem to improve some of the aforementioned cognitive abilities.; Conclusions: Results from this synthesis and critical analysis of neuropsychological deficits in informal caregivers offer guidelines for diagnosing caregivers' cognitive status by including a test battery covering all the domains considered relevant. Finally, given the ability of cognitive behavioural interventions to improve cognition in caregivers, further studies on their long-term effects on caregivers are warranted. Chronic stress entails an acceleration of the cognitive ageing Cross-sectional studies concluded that informal caregivers reported a generalized cognitive deterioration Cognitive-behavioural interventions seem to improve cognitive abilities of caregivers.

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The Impact of Stigma on Community Reintegration of Veterans With Traumatic Brain Injury and the Well-Being of Their Caregivers

Objective: To assess the association between perceived stigma and discrimination and caregiver strain, caregiver well-being, and patient community reintegration.; Design: A cross-sectional survey study of 564 informal caregivers of U.S. military service veterans of wars in Iraq and Afghanistan who experienced traumatic brain injuries or polytrauma (TBI/PT).; Setting: Care settings of community-dwelling former inpatients of U.S. Department of Veterans Affairs Polytrauma Rehabilitation Centers.; Participants: Caregivers of former inpatients (N=564), identified through next-of-kin records and subsequent nominations.; Interventions: Not applicable.; Main Outcome Measures: Caregiver strain, depression, anxiety, loneliness, and self-esteem; as well as care recipient community reintegration, a key aspect of TBI/PT rehabilitation.; Results: Family stigma was associated with strain, depression, anxiety, loneliness, lower self-esteem, and less community reintegration. Caregiver stigma-by-association was associated with strain, depression, anxiety, loneliness, and lower self-esteem. Care recipient stigma was associated with caregiver strain, depression, anxiety, loneliness, lower self-esteem, and less community reintegration.; Conclusions: Perceived stigma may be a substantial source of stress for caregivers of U.S. military veterans with TBI/PT, and may contribute to poor outcomes for the health of caregivers and for the community reintegration of the veterans for whom they provide care.

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Risky wandering behaviors of persons with dementia predict family caregivers' health outcomes

Objectives: To examine the relationships between dementia persons' risky wandering behaviors and family caregivers' physical and mental health. Methods: A secondary analysis was conducted using the original cross-sectional data from180 dyads. The Risky Wandering and Adverse Outcome model assessed behaviors of eloping and getting lost outside the house for dementia persons. Data were analyzed using descriptive statistics, Pearson's correlation coefficient and hierarchical regressions. Results: The mean age of caregivers was 56.01 years (SD = 13.8); 65% were female. Younger caregivers experienced greater physical fatigue and sleep disturbance. Presence of foreign helpers predicted a reduction in mental and physical fatigue of caregiver (β = −0.186, p <.05; β = 0.198, p <.05, respectively). Getting lost outside of the house influenced caregivers' mental fatigue (β = 0-0.215, p <.05); eloping behavior influenced caregivers' sleep disturbance (β = 0.231, p <.05). Care-receivers' activities of daily living affected caregivers' depressive symptoms (β = −0.179, p <.05). Conclusions: Dementia family caregiver physical and mental health problems have distinct predictors. Employing the Risky Wandering and Adverse Outcome model could inform policy makers regarding long-term care resources to improve dementia care.

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'It's a traumatic illness, traumatic to witness': a qualitative study of the experiences of bereaved family caregivers of patients with cutaneous T‐cell lymphoma

Background: Cutaneous T‐cell lymphomas (CTCL) are rare cancers, which can be difficult to diagnose, are incurable and adversely affect quality of life, particularly in advanced disease. Families often provide care, but little is known about their experiences or needs while caring for their relative with advanced disease or in bereavement. Objectives: To explore the experiences of bereaved family caregivers of patients with CTCL. Methods: Single, semi‐structured qualitative interviews were conducted with bereaved family caregivers of patients with CTCL recruited via a supra‐regional CTCL clinic. Transcribed interviews were analysed thematically, focusing on advanced disease, the approach of death and bereavement. Results: Fifteen carers of 11 deceased patients participated. Experiences clustered under four themes: (1) complexity of care and medical intervention; (2) caregiver roles in advanced CTCL; (3) person‐centred vs. organization‐centred care in advanced CTCL and (4) knowing and not knowing: reflections on dying, death and bereavement. Caregivers often had vivid recollections of the challenges of caring for their relative with advanced CTCL and some took on quasi‐professional roles as a result. Advanced disease made high demands on both organizational flexibility and family resources. For many caregivers, seeing disease progression was a prolonged and profoundly traumatic experience. The extent to which they were prepared for their relative's death and supported in bereavement was highly variable. Sub‐themes within each theme provide more detail about caregiver experiences. Conclusions: Family caregivers should be considered part of the wider healthcare team, acknowledging their multiple roles and the challenges they encounter in looking after their relative with CTCL as the disease progresses. Their experiences highlight the importance of organizational flexibility and of good communication between healthcare providers in advanced CTCL. 

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Experiences of bereaved family caregivers of patients with CTCL

Summary: Cutaneous T‐cell lymphomas (CTCL) are rare types of skin cancer. Skin may develop tumours or ulcers. Sometimes these may cover quite large areas and feel itchy or uncomfortable. Internal body parts may be affected in more advanced disease. Only a few people are diagnosed each year (8 per million), so most GPs do not meet people with this disease. This study from the U.K. aimed to find out about the experiences of family or close friends of people who had died because of the disease (not all people with this disease die of it). Relatives of 11 patients with CTCL who had died were interviewed, four months or more after the death. The themes from what they said are described. Family members gave vivid descriptions of how the illness changed the appearance of their relative. They spoke of how difficult it was to look after someone with very damaged skin. They described the many different things they had to do to care for their relative both in hospital and at home. Some patients had frequently been in and out of hospital. Some caregivers expected them to come home each time and so had not felt prepared when their relative died. Several caregivers described how upsetting it was to see how illness affected their relative before they died. The authors say that family caregivers should be seen as part of the care team looking after the patient. They recommend that carers' needs for practical and emotional support and information should be considered during each patient's illness. Support for carers should also be offered following the death of their relative. 

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Informal Caregiving Relationships in Psychosis: Reviewing the Impact of Patient Violence on Caregivers

A modest association can be found between people with a schizophrenia spectrum diagnosis (psychosis) and perpetrating acts of violence. When a person with psychosis does engage in violence, it is their informal carers, when compared to those from the general population, who are more likely to be the targets, and violence will often occur within the family home. Despite the importance of carer support for improving patient outcomes, our understanding of how carers are impacted by patient initiated violence in psychosis remains limited. This paper reviews literature documenting the effects of patient-initiated violence in psychosis on carer functioning. The review comprised searches of Medline, PsychInfo, Embase, and Web of Science databases and the hand searches of reference lists from relevant published papers. The review was limited to English language publications from inception to 11th September 2017, and where carer experiences following reports of violence from patients with psychosis were specifically recorded. Data from 20 papers using mixed methodologies were reviewed. Patient violence in psychosis was linked to poorer carer outcomes, including carer reports of burden, trauma, fear, and helplessness. There is, however, a significant need for further studies to systematically quantify the impact and correlates of patient initiated violence on psychosis caregivers, and improve prevention.

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Preventing Chronic Emotional Distress in Stroke Survivors and Their Informal Caregivers

Background/objective: Chronic emotional distress (e.g., depression, anxiety, post-traumatic stress) is common after stroke and interdependent between patients and their informal caregivers. We measured stroke survivors', caregivers', and neurocritical care nurses' views of primary drivers of distress during the stroke experience, and needs and preferences for the structure, topics, mode of delivery, and timing of an intervention to promote emotional recovery.; Methods: We conducted semi-structured interviews with 24 patient-caregiver dyads within the Neuroscience Intensive Care Unit (Neuro-ICU). Additionally, we conducted two focus groups with 15 nurses. Interviews and focus groups were audio-recorded, transcribed, and coded using NVivo 11 (QSR International) software.; Results and Conclusions: The challenges and impacts of stroke most commonly reported by dyads were: uncertainty about future health, fear of recurrent strokes, negative emotions, and role changes post-stroke. Dyads and nurses agreed that resiliency skills such as mindfulness/focusing on the present, problem solving, gratitude/optimism, self-care, interpersonal communication and developing a supportive team of family, friends, and medical staff are beneficial to optimize recovery. The potential barrier to intervention delivery was accessibility, due to challenges of time and travel to appointments. Participants agreed that starting the intervention at hospitalization and continuing via live video after discharge is an ideal delivery modality. Stroke survivors, caregivers, and Neuro-ICU nurses believe that a resiliency skills-based intervention to prevent chronic emotional distress is necessary and urgent. This qualitative study provides valuable information on the challenges faced by dyads, intervention topics to prioritize, and strategies to maximize feasibility, acceptability, and effect.

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Association between incongruence about survivor function and outcomes among stroke survivors and family caregivers

Background: Stroke survivors and family caregivers often have incongruent appraisals of survivor cognitive, physical, and psychosocial function. Partner incongruence contributes to poor outcomes for survivors and caregivers. Objectives: This study explored whether partner incongruence: (1) differs by function domain; (2) increases or decreases over time, and; (3) is associated with self-rated health, distress, stress, and depressive symptoms. Methods: Structured surveys were administered to 32 survivors and caregivers at approximately 3 (enrollment) and 7 months (follow-up) post-stroke. Paired t-tests were used to examine partners' ratings of survivor function at enrollment and follow-up, and changes in incongruence over time. Partial correlations were used to examine the association between incongruence at enrollment and outcomes at follow-up. Results: Survivors consistently rated their own memory and thinking as significantly better than caregivers rated their memory and thinking. At follow-up, survivors rated their own communication as significantly better than caregivers rated their communication. Incongruence about survivor memory and thinking was associated with survivor distress, as well as caregiver distress, stress, and depressive symptoms. Incongruence about survivor ADLs was associated with caregiver stress and depressive symptoms. Incongruence about survivor social participation was associated with caregiver distress. Conclusions: Findings from this study suggest that survivors and caregivers often have incongruent appraisals of survivor function, that incongruence does not improve naturally over time, and that incongruence may be detrimental for survivor and caregiver outcomes. Further research should be directed at the mitigation of incongruence and strategies to improve outcomes for both survivors and family caregivers.

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“Stuck in a loop of fear”: a phenomenological exploration of carers’ experiences supporting a spouse with acquired brain injury

Purpose: Family caregivers are important to facilitating the rehabilitation of individuals with brain injury. However, research shows spousal carers often reporting poorer health and well-being with psychosocial challenges including increased marital dissatisfaction. This study explores the accounts of participants caring for a spouse with brain injury. Materials and methods: This study used semi-structured interviewing and interpretative phenomenological analysis. Results: One theme, “Living in and beyond the loop of fear”, with two subheadings is reported. Participants’ attempts to manage their fears prominently defined their early caregiving. Fears were aggravated by the vulnerability of their spouse’s health which partially owed to brain injury sometimes having no symptoms prior to its onset. Consequently, participants anxiously strove to prevent further harm to their spouse’s health due to what they perceived as the continued “hidden” threat of brain injury. Therefore, participants became hypervigilant, leaving themselves vulnerable to burnout. Over time, some participants modified care practices and managed fears using beliefs accepting their limits to protect their spouses’ health. Conclusions: Findings suggest that beliefs conducive to acceptance helped carers to develop more sustainable, less over-protective, care. Interventions to help carers develop similar beliefs could be provided in therapeutic settings. Recommendations for future research are made. Implications for Rehabilitation: Caring for a long-term partner with acquired brain injury has considerable challenges which can threaten an individual’s health and well-being. Our research reports on carers’ experiences of anxiety which they managed through hypervigilant and overprotective practices which put them at risk of burnout. Consequently, we recommend the promotion of care beliefs that reframe caregiving: recognising the carer’s limitations to safeguard a spouse, whilst accepting the vulnerability of the spouse’s health. We propose that promoting such principles in therapeutic settings may better equip carers emotionally to provide sustainable care, something which could benefit the carer and spouse’s rehabilitation alike.

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The impact of depression and anxiety on quality of life in Chinese cancer patient-family caregiver dyads, a cross-sectional study

Background: Cancer and its treatment can result in psychological distress in both adults with cancer and in their family caregivers. This psychological distress acts as a significant adverse factor in patient-caregiver dyads. The study purposes included: (i) to assess anxiety and depression in adults with cancer and their family caregivers, and examine the dyadic relationship of anxiety and depression in patient-caregiver dyads; (ii) to investigate factors that may modify these relationships; and (iii) to explore the impact of anxiety and depression on patient-caregiver dyad quality of life (QOL).; Methods: This was a secondary analysis of a cross-sectional study. Participants consisted of 641 patient-caregiver dyads. Participants completed a survey assessing adults with cancer-related, family caregiver-related, and family-related variables using a demographic/clinical information sheet. In addition, anxiety/depression and QOL were assessed by using the Chinese version of the Hospital Anxiety and Depression Scale and SF-12 respectively. Data were analyzed by using descriptive statistics, Pearson correlations, subgroup analysis, and the Actor-Partner Interdependence Model.; Results: Nearly one-third of participants had experienced anxiety and depression. Adults with cancer and family caregivers experienced a similar degree of anxiety and depression. Correlations (r) of anxiety and depression between patient-caregiver dyads ranged from 0.25 to 0.32. Various factors influencing the anxiety and depression relationship between patient-caregiver dyads were identified, including adults with cancer-related (e.g., age, gender, marital status, level of being informed about the disease, different types of cancer and treatment), family caregiver-related (e.g., being the spouse of a patient, duration in their role as a family caregiver, and amount of time spent on caregiving each day), and family-related (family relationship pre- and post-cancer, financial burden on the family due to cancer treatment) variables. To some extent, both actor and partner effects were identified for anxiety and depression on the QOL of patient-caregiver dyads.; Conclusions: Study findings call attention to anxiety and depression, as well as related factors, in patient-caregiver dyads. The underlined essential components and focus of intervention, which will be developed to decrease psychological distress and improve QOL in patient-caregiver dyads, included individual characteristics of patient-caregiver dyads, family relationship, and anxiety and depression in their counterparts.;

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Turkish Family Decision Making Process for Placing a Loved One with Dementia in Long-Term Care

Aims: This descriptive qualitative study was conducted in an attempt to understand the experiences of family members of people with dementia in the process of deciding to institutional their care. Methodology: The data were collected from 15 caregivers using a semi-structured data form with in-dept interviews. The data were analyzed using qualitative content analysis. Results: Three main themes identified were having difficulty providing care, seeking solutions to maintaining care at home, and difficulty in decision-making to place their family members in a long-term care facility. Conclusions: Turkish families experiences difficulties about decision making process for placing their loved ones in a long term care. Results showed us that they need support in this process. Nurses should consider their feelings and support them.

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Changes in caregiving appraisal among family caregivers of persons with dementia: A longitudinal study over 12 months

Aim: The main purpose of this study was to identify changes in both caregiver burden and positive caregiving appraisal over time, as well as factors affecting these variables. Methods: This analysis included 41 in‐home family caregivers who had completed questionnaires at baseline, 6 months, and 12 months. We assessed various caregiver and care recipient characteristics, caregivers' positive appraisal of caregiving, caregiver burden, desire to continue caregiving, severity of care recipients' cognitive impairment, and behavioural and psychological symptoms of dementia. Results: We observed no significant differences in caregiver burden, positive caregiving appraisal, or behavioural and psychological symptoms of dementia across the three measurement times. However, we did find differences in the desire to continue caregiving and in the personal strain and role strain dimensions of caregiver burden. Conclusion: Overall, our study suggests that caregiving service providers should consider support that focuses on improving the subjective caregiving appraisals of caregivers.

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Immediate and Lagged Effects of Daily Stress and Affect on Caregivers’ Daily Pain Experience

Purpose of the Study We examined the effect of daily stress, affect, and adult day service (ADS) use on the daily pain experience among caregivers of individuals with dementia (IWD). Participants were interviewed for 8 consecutive days. Caregivers utilized an ADS program on some days and provided care at home on other days. We hypothesized ADS use, care-related and noncare-related subjective stress, and affect would significantly influence and interact in ways to exacerbate or buffer the experience of daily pain. Design Participants were 173 family caregivers of IWDs using ADS more than 2 days per week. Participants with IWDs diagnosed with “mild cognitive impairment” were excluded. Daily telephone interviews assessed stress, affect, and pain. Methods Multilevel models were used to examine the relation between daily stress and daily pain and interaction effects of other daily experiences within the context of ADS use. Results Multilevel models revealed a significant relation between care-related subjective stress and daily bodily pain as well as an interaction between noncare-related subjective stress and daily bodily pain. ADS use and affect did not predict daily pain. Lagged effects revealed a significant interaction between yesterday’s ADS use and today’s positive affect on today’s bodily pain. Implications Findings suggest that further studies are warranted for understanding and controlling pain among caregivers. Addressing the physical health needs through pain management interventions, positive affect maximization, and ADS use may improve the overall wellbeing of caregiving dyads. 

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Bidirectional relationship between caregiver burden and neuropsychiatric symptoms in patients with Alzheimer's disease: A narrative review

Objective: The aim of this review is to make a state of the art of the potential influence of neuropsychiatric symptoms (NPs) on caregiver stress and vice versa.; Methods: We searched PubMed and Google Scholar for potential eligible articles.; Results: Patients with Alzheimer's disease (AD) usually need high levels of care in all activities of daily living, most of them provided by family members, friends, or informal caregivers. Caregivers have to cope with both age-related conditions and dementia-related factors. Therefore, caregiving in dementia is more difficult and stressful than caregiving for older adults, affected by other conditions. Neuropsychiatric symptoms, such as anxiety, agitation, disinhibition, aggressive behavior, and sleep disturbances are more closely related to caregiver burden, and associated with more negative outcomes such as decline in their general health, quality of life, and social isolation. Caregiver burden worsens relationship between caregiver and patients with AD. Thus, this relationship may increase the frequency and severity of NPs. Predictors of burden were being a woman, a spouse, and old person with immature coping mechanisms, social isolation, with insufficient knowledge about dementia, poor premorbid relationship with patient, and high levels of negative expressed emotions.; Conclusion: Because of the bidirectional relationship between caregiver burden and NPs, the active management strategies of dementia care should include early identification and treatment risk factors for both caregiver stress and NPs in patients with AD. Therefore, to improve one of them can be exert beneficial for the other.

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The Cost of Caring: Economic Vulnerability, Serious Emotional Distress, and Poor Health Behaviors Among Paid and Unpaid Family and Friend Caregivers

This study examined differences between paid and unpaid family/friend caregivers to better understand the consumer-driven caregiving workforce. We compared economic vulnerability, unhealthy behavior, and serious emotional distress for 475 paid and 10,500 unpaid family/friend informal caregivers from the 2009 California Health Interview Survey. We then estimated whether caregiver status moderated the relationship between economic vulnerability and health outcomes. Compared to unpaid family/friend caregivers, paid family/friend caregivers had a 27% greater risk ( p = .002) of economic vulnerability. Among all family/friend caregivers, the probabilities of serious emotional distress and unhealthy behaviors increased by >100% and 28% for those with the greatest compared to the least economic vulnerability, and caregiver type did not moderate these relationships. To address economic and health vulnerabilities of paid informal caregivers, policy makers might increase wages in consumer-driven programs. These changes could prove beneficial to both paid informal caregivers and their care recipients, while reducing long-term inefficiencies in consumer-driven programs.

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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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The influence of the individual neuropsychiatric symptoms of people with Alzheimer disease on family caregiver distress-A longitudinal ALSOVA study

<bold>Objectives: </bold>Family caregivers (FCs) face a variety of demands while caring for persons with Alzheimer disease (AD). Longitudinal studies identifying the specific AD-related neuropsychiatric symptoms (NPS) that contribute to FC distress are rare. We analyzed which NPS in association with care recipient and caregiver demographic factors are associated with FC psychological distress over a 36-month follow-up period.<bold>Design: </bold>This is a longitudinal study with annual follow-up. Participants were people with AD (n = 226) and their FCs (n = 226).<bold>Measurements: </bold>The Neuropsychiatric Inventory was used to assess NPS, and The General Health Questionnaire was used as a measure of caregiver distress. The effect of NPS on FC psychological distress over time was analyzed using a linear-mixed effect model.<bold>Results: </bold>Delusions (P = .003), agitation (P < .001), and sleep disturbance (P = .005) are associated with FC psychological distress. One of four people with AD developed delusions and agitation during the early stages of the disease. Sleep disturbances increased over the follow-up time. A marital relationship was associated with FC distress, while some prevalent symptoms, such as depression, did not affect distress.<bold>Conclusions: </bold>Delusions, agitation, and sleep disturbances may cause distress to the FCs of persons with AD, especially if they live together. Clinicians should meet with FCs regularly and recognize those FCs at risk for a decline in psychosocial health. 

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Effects of family-centered empowerment intervention on stress, anxiety, and depression among family caregivers of patients with epilepsy

Objectives Family caregivers face numerous challenges in taking care of their family members with epilepsy. The empowerment of this group of people, who can be described as forgotten patients, should always be considered through supportive interventions; therefore, this study investigated the effect of a family-centered intervention program on stress, anxiety, and depression among family caregivers of patients with epilepsy. Methods In 2017, a trial was conducted in Iran among subjects selected by the convenience sampling method and randomly assigned to two groups: intervention and control. After five sessions per week over a four-week period, the intervention- and control-group data were collected using the Depression Anxiety Stress Scale (DASS) in three stages: before, immediately after, and two months after the intervention. Data were analyzed with Statistical Package for the Social Sciences (SPSS) software using descriptive and analytical statistics, an independent t -test, and repeated measures Analysis of variance (ANOVA). Results In this study, the family caregivers included 61.3% women and 38.7% men, with a mean age of 37.5 years. The findings showed no significant differences in the mean scores of stress (p = 0.93), anxiety (p = 0.91), and depression (p = 0.56) before the interventional program between the intervention and control groups, but these differences were statistically significant in the mean score of stress (p = 0.003) in the immediately after the interventional program, whereas the mean scores of depression were not decreased significantly (p = 0.3). Two months after the interventional program the mean scores of stress (p = 0.001) and anxiety (p = 0.001) were significantly decreased in the intervention group, but the mean score of depression was not decreased significantly (p = 0.09). Conclusion The results suggested that a family-centered intervention program reduced the stress, anxiety, and depression of caregivers because of feasibility, simplicity, and utility of intervention. This program was focused on psychological issues of caregivers, and an emphasis on their empowerment helped them in managing their problems in the caregiving situation and achieved greater psychological potency in the caring process. 

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The consensual universe of family caregivers and their standing in the care services: a social representation study

Objective: The study's aim has been to analyze the relatives' representations of patients under palliative care. Methods: It is a descriptive research with a qualitative approach, which is based on the Serge Moscovici's Social Representation Theory. Results: The research's results showed that death is described as a final physiological stage, in other words, a technically well-ordered process of nature and the only certainty that we have in life. Moreover, death can be understood as an incomprehensive mystery, an unacceptable absurd or can be treated as a taboo or a social representation of a personal universe. Conclusion: Although a patient can be cured through standard treatment, he needs either special or palliative care.

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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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The effects of leisure on stress and health of family caregivers

The number of older adults is projected to grow significantly by 2050. Predictions also suggest that living longer but not healthier lives will increase the demand for family caregivers as well. Regrettably, caregivers in comparison with noncaregivers will likely continue to experience higher levels of stress, poorer health, and increased propensity for using unhealthy behaviors to address their stress. This study used mediation analysis to examine the relationship among 3 leisure variables, perceived stress, and self-reported general health (SRGH) of family caregivers (n = 240) who completed an online survey. Results indicated that individually, each of the 3 leisure variables was positively associated with higher SRGH. Results also showed that perceived stress significantly predicted SRGH. Of greater significance, however, was the observation that perceived stress was significantly predicted by both satisfaction with time for leisure and satisfaction with the quality of the leisure experience but not by leisure participation. Thus, the variables that addressed caregivers' satisfaction with both the time for leisure and with the quality of the leisure experience were more effective than mere leisure participation to reduce perceived stress and ultimately provide better self-reports of health. These results are consistent with the literature about the ability of leisure to cope with stress. More importantly, they provide strong support for the design and implementation of interventions to help caregivers develop meaningful leisure-based activities to reduce perceived stress.

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Ambivalence, families and care

Although research shows that most parents and adult children report generally positive and supportive ties, there is also evidence that negative interactions and emotions are common in intergenerational relationships. To investigate this complexity, researchers have moved beyond simple models to orientations and approaches that recognise contradictory emotions and attitudes regarding family relationships in later life. These efforts have given rise to what has come to be termed the 'intergenerational ambivalence' perspective. In this article, we explore the applicability of this perspective to the issue of family caring. We begin by reviewing recent developments in the intergenerational ambivalence perspective. We then discuss a paradox: although caring appears to be a situation particularly prone to conflicting emotions, little research has focused specifically on ambivalence among carers. We present results from our work that shed light on the measurement of carer ambivalence, as well as substantive findings regarding sources of ambivalence for carers.

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Home Alone Revisited: Family Caregivers Providing Complex Care

The AARP Home Alone study in 2012 was the first national look at how families, neighbors, and friends are managing medical/nursing tasks—that is, the complex care associated with administering multiple medications, changing dressings, handling medical equipment, and providing many other kinds of help that were formerly offered by trained professionals.  (See www.aarp.org/homealone.) Seven years later, this Home Alone Revisited study sought a deeper understanding of what family caregivers who perform medical/nursing tasks experience. Employing an oversampling of multicultural groups, it took a closer look at specific difficult tasks, such as managing incontinence, pain, and special diets. It also offered greater attention to resources and outcomes as well as multicultural, gender, and generational experiences. A nationally representative, population-based, online survey of 2,089 family caregivers provided the basis for our analyses. An organizing framework, qualitative findings, and multivariate analyses provided further insights into the stories these family caregivers told us. Their voices led to our recommendations, found in these pages, for professionals, health care organizations, policy makers, and private-sector stakeholders.

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Challenges of Family Caregivers of Patients with Mental Disorders in Iran: A Narrative Review

Background: Family caregivers of patients with mental disorders play the most important role in the care of psychiatric patients (PPs) and preventing their readmission. These caregivers face different challenges in different cultures. We conducted this study to determine the challenges of caregivers of patients with mental disorders in Iran. Materials and Methods: This study is a narrative review with a matrix approach conducted by searching electronic databases, SID, IRANMEDEX, MAGIRAN, PUBMED, SCOPUS, Web of Sciences, from February 2000 to 2017. Searched keywords include challenges, family caregivers of psychiatric patient, family caregivers and psychiatric patient, mental illness, families of psychiatric patient, and Iran. One thousand two hundred articles were found in English and Farsi, and considering inclusion and exclusion criteria, 39 articles were examined. Results: The results of the studies show that not meeting the needs of caregivers, burnout and high burden of care, high social stigma, low social support for caregivers, and low quality of life of caregivers were among the most important challenges faced by caregivers. Conclusions: Despite the efforts of authorities in Iran, family caregivers of patients with mental disorders still face challenges. Therefore, the need for all-inclusive support for family caregivers of patients with mental health problems is necessary. 

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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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Dedication in caring of hemodialysis patients: Perspectives and experiences of Iranian family caregivers

Background: Although dialysis treatment is considered as a life-saving treatment for chronic renal failure patients, the caregivers face challenges in caretaking of these patients. Objectives: This study is aimed to explain the perspectives and experiences among caregivers of the patients undergoing hemodialysis in Iran. Methods: A qualitative design, based on a thematic analysis approach, was used to reach the study aim. In this study, 25 hemodialysis family caregivers were selected by purposeful sampling. The data were gathered through in-depth and unstructured interview and field observation and analyzed by the inductive thematic approach. Results: The three main themes were generated from the analysis of the data indicating that the caregivers face challenges such as heavy burden of care, tension in care, and emotional exhaustion. Conclusion: Caretaking of the hemodialysis patients is constantly accompanied with challenges and concerns regarding the effective care for patients. Health-care providers need to address these concerns based on both patient- and caregiver-focused approaches, rather than only patient focused, to the design and planning for helping the patients and their caregivers.

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Exploring family members' experiences of the Assessment and Treatment Unit supporting their relative

Background Learning disability services must include the people who use them (individuals and their families/carers) in service commissioning, planning and delivery (Department of Health 2012. Transforming care: A national response to Winterbourne View Hospital. Department of Health review: Final report). One group of important stakeholders in learning disability services are the family members and carers of people with a learning disability. The aim of this study was to explore how family members experienced their involvement with one Assessment and Treatment Unit, with a view to shaping future service developments. Materials and Methods Qualitative methods were employed to explore family members' lived experiences. Four participants, all parents of service users, took part in semi-structured interviews. Interview transcripts were analysed using thematic analysis. Results Analysis elicited four master themes under which subordinate themes clustered. The master themes were as follows: “Admission as traumatic, a relief, or both,” “Negotiating a new role,” “Valued features of the unit” and “Negative experiences.”. Conclusions The findings have implications for learning disability services and future research. Findings are discussed with relevance to strengths, limitations, wider literature and policies driving learning disability services. 

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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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Anxiety and Depression Associated With Burden in Caregivers of Patients With Brain Metastases

Purpose/Objectives: To describe and examine the relationship between caregiver burden and the affective disorders anxiety and depression in caregivers of patients with brain metastases. Design: Cross-sectional, descriptive, correlational. Setting: Moores Cancer Center at the University of California, San Diego.Sample: 56 family caregivers of patients with brain metastases from solid tumors at other primary sites. Methods: Self-administered survey. Main Research Variables: Caregiver burden, anxiety, and depression. Findings: With the exception of caregiver esteem, no statistically significant relationships were noted between impact on schedule, a dimension of caregiver burden, and screening positive for affective disorders. Conclusions: Findings from this study support previous reports indicating that the odds of having anxiety and depressive symptoms are greater in family caregivers who report higher levels of caregiver burden. Implications for Nursing: The identification and management of caregiver burden are important considerations for a comprehensive cancer care program. Addressing the needs of the cancer caregiver, who is at heightened risk for various psychological, physical, financial, and social problems, is increasingly vital.

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Bridging the divide: The adjustment and decision-making experiences of people with dementia living with a recent diagnosis of cancer and its impact on family carers

The risk of living with dementia and, separately, cancer, increases exponentially with age. However, to date, there is a paucity of research investigating the experiences of people living with both these conditions. This study used semi-structured interviews to explore the decision-making and treatment options for people who live with both dementia and cancer. In total, ten people living with both dementia and cancer (aged 39-93 years) and nine family carers were interviewed. Braun and Clarke's approach to thematic analysis was used together with framework matrices to organise the data. In this article four sequential and descriptive themes are presented. 'Reaching a diagnosis of cancer' describes the vital role that family carers play in encouraging the person with dementia to seek an explanation for their presenting (undiagnosed cancer) symptoms to their general practitioner. 'Adjusting to the cancer diagnosis when living with dementia' outlines a variety of emotional and practical responses to receiving news of the diagnosis. 'Weighing up the cancer treatment options' highlights the different decisions and circumstances that family carers and people living with both dementia and cancer are faced with post-diagnosis. 'Undergoing cancer treatment' shares the finding that cancer treatment decision-making was not straightforward and that people living with both dementia and cancer would often forget about their cancer and what procedures they had been through.

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Measuring Ambivalent Feelings in Dementia Family Caregivers: The Caregiving Ambivalence Scale

Purpose of the Study: Ambivalence has been described as simultaneous positive and negative emotional experiences. Although ambivalent feelings are often reported by dementia family caregivers, the effect of these feelings on caregivers' mental health has not been studied. Furthermore, the measurement of ambivalence specific to caregiving situations has not been studied. The aims of this study are to analyze the psychometric properties of the Caregiving Ambivalence Scale (CAS) and, drawing upon the stress and coping model, to test whether ambivalent feelings significantly contribute to caregivers' distress. Design and Methods: Participants were 401 dementia family caregivers. Face-to-face interviews were conducted which included measures of ambivalence, depressive (CES-D) and anxious symptomatology (POMS), stressors (disruptive behaviors subscale of the RMBPC), and sociodemographic information. Results: Results from exploratory, parallel, and confirmatory factor analyses suggest that the CAS has a unidimensional structure, explaining a 64.26% of the variance of ambivalent feelings. Good reliability and validity indexes were found, including a Cronbach's alpha of .86. The results revealed significant (p < .01) positive associations with depressive and anxious symptomatology, and frequency and reaction to disruptive behaviors. Ambivalent feeling scores significantly contributed to the explanation of caregivers' depressive and anxious symptoms after controlling for sociodemographic and stressor variables. Implications: The CAS shows good psychometric properties that recommend its use as a measure of ambivalent feelings in caregivers and appears to be a relevant variable for understanding caregivers' mental health.

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The Challenges, Emotions, Coping, and Gains of Family Caregivers Caring for Patients With Advanced Cancer in Singapore: A Qualitative Study

Background: Caring for a family member with advanced cancer at home is demanding as the ill family member is likely to have complex physical and emotional needs. There is a paucity of studies on the experience of home family caregivers of people with advanced cancer in the Asian region. Objective: The aim of this study was to describe the experiences of family caregivers caring for a person with advanced cancer at home in Singapore. Methods: This was a qualitative study; data were collected by semistructured interviews and analyzed using content analysis. A purposive sample of 19 family caregivers who were taking care of a family member with advanced cancer were recruited from home hospice care services in Singapore. Results: Most of the caregivers were female (n = 14), ranging in age from 21 to 64 years (mean, 46.4 [SD, 10.5] years). Four themes were generated from the data: (1) caregiving challenges, (2) negative emotions, (3) ways of coping, and (4) positive gains of caregiving. Conclusions: This study generated insights into the challenges, emotions, and coping of Asian family caregivers caring for patients with advanced cancer. Such understanding could help in developing appropriate intervention for caregivers to reduce their burden and stress. Implications for Practice: Caregivers require knowledge on resolving family conflicts and about communicating and enhancing closeness with the ill family member. Support from healthcare professionals is essential even if caregivers have support from family members and friends; nurses can make conscious efforts to show concern for caregivers as well as for patients.

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How much care is enough? carer's guilt and Bergsonian time

Despite devoting their time to another person's needs, many carers paradoxically experience guilt during their caregiving tenure concerning whether they are providing enough care. When discussing the "enough" of anything, what is at stake is that thing's quantification. Given that there are seemingly no quantifiable units of care by which to measure the role, concerns regarding whether enough care is being provided often focus on what constitutes enough time as a carer. In exploring this aspect of the carer's experience, two key parameters emerge; (1) guilt, and, (2) quantified time. The guilt that carers report regarding whether they devote "enough time" to their caring responsibilities can be examined through Henri Bergson's philosophical conception of quantification. By integrating contemporary analyses of carers' guilt from the social sciences, most significantly via the sociology of Rebecca Olson, the relationship between quantified time and guilt becomes apparent. A quantified conception of time frames the assumption that spending more time on caregiving will reduce the amount of guilt felt by a carer. However, whilst care is structured according to quantified, clocked and calendared time, there are not comparable, quantifiable parameters for guilt. This means that suppositions of an inverse relationship between how much time one spends giving care, and how much guilt they will feel in terms of their caregiving, are problematic. These insights become relevant to health care policies via a coherence with calls to make the role of unpaid, caregiving, labour time more visible, and by explaining how understanding quantified time can help policies guide how caregivers negotiate guilt. 

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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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The Mediating Role of Sleep Quality on Well-Being Among Japanese Working Family Caregivers

The purpose of this study was to investigate whether the well-being of caregivers is mediated by the association between behavioral and psychological symptoms in elderly relatives and the quality of sleep experienced by caregivers using a mediational model. The participants were 105 working family caregivers in Japan. We assessed well-being based on the Kessler Scale 10, self-rated health, and satisfaction in daily life. Our results showed that the well-being in working family caregivers was impacted by the severity of behavioral and psychological symptoms in elderly relatives. Well-being in working family caregivers was also affected by quality of sleep. Maintaining good quality of sleep in working family caregivers is important for reducing caregiver burden and psychological distress, and for improving the balance between work and family life. 

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A retrospective study of a multicomponent rehabilitation programme for community-dwelling persons with dementia and their caregivers

INTRODUCTION: This study determined whether the multicomponent rehabilitation programme of a memory clinic had positive outcomes on ameliorating everyday functioning, quality of life, mood and behavioural disturbances of persons with dementia and reducing distress and burden of caregivers. METHOD: A retrospective pre-test-post-test study without control group was conducted on the first cohort of persons with dementia (n=30) and their caregivers (n=30), who participated in a programme lasting for a maximum of 1 year with 25 1-hour counselling sessions. The assessment contained an evaluation of everyday functioning in basic, instrumental and advanced activities of daily living, cognition, mood, emotional and behavioural disturbances, quality of life and caregiver burden. RESULTS: Eight participants dropped out prematurely. For persons with dementia (n=22), participating in the programme did not improve everyday functioning and cognition but ameliorated quality of life significantly (Z=-2.7, p=0.006, 95 per cent CI (.003-.005)) and stabilized mood, emotional and behavioural disturbances for 60 per cent or more of them. For caregivers (n=22), the mild to moderate burden of care remained stable or got better for 63.6 per cent of the caregivers. CONCLUSION: This programme appears to be promising and valuable, and might reduce institutionalization rates. Future explorations are recommended to research how participants evolve and to investigate which participants responded in a positive way. 

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Psychological distress, social support, and quality of life among cancer caregivers in Albania

Objective Drawing on the Stress Process Model, this study examines cancer caregiving in Albania. We used conditional process analysis to test the relationship between psychological distress and quality of life through social support and to examine whether gender moderates pathways in this mediation model. Methods Face-to-face interviews were conducted with a non-probability sample of 377 caregivers from the public oncology service. Standardized measures were selected based on psychometric properties and cross-cultural adequacy; all had good internal consistency. Results Participants reported high levels of psychological distress, moderate social support, and poor quality of life. Compared with men, women had higher levels of distress, worse quality of life, and comparable levels of support. Men were more likely to be caring for a spouse and to rely on friends, while women also cared for others and relied more on family. Social support mediated a strong negative relationship between psychological distress and QoL. These pathways did not differ by gender. Conclusions Cancer is increasing rapidly in developing countries, where family caregiving is the preferred and often only option for long-term, intensive care. This study points to high risks for psychological distress and reduced quality of life, especially for female caregivers in Albania. Findings further highlight the importance of social supports an as avenue for prevention and intervention to improve quality of life for both men and women. 

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Silent strain of caregiving: Exploring the best predictors of distress in family carers of geriatric patients

Objectives: The aim of this article was to identify the best predictors of distress suffered by family carers (FCs) of geriatric patients. Methods: A cross-sectional study of 100 FC-geriatric patient dyads was conducted. The negative impact of care (NIoC) subscale of the COPE index was dichotomized to identify lower stress (score of #15 on the scale) and higher stress (score of ≤16 on the scale) exerted on FCs by the process of providing care. The set of explanatory variables comprised a wide range of sociodemographic and care-related attributes, including patient-related results from comprehensive geriatric assessments and disease profiles. The best combination of explanatory variables that provided the highest predictive power for distress among FCs in the multiple logistic regression (LR) model was determined according to statistical information criteria. The statistical robustness of the observed relationships and the discriminative power of the model were verified with the cross-validation method. Results: The mean age of FCs was 57.2 (±10.6) years, whereas that of geriatric patients was 81.7 (±6.4) years. Despite the broad initial set of potential explanatory variables, only five predictors were jointly selected for the best statistical model. A higher level of distress was independently predicted by lower self-evaluation of health; worse self-appraisal of coping well as a caregiver; lower sense of general support; more hours of care per week; and the motor retardation of the cared-for person measured with the speed of the Timed Up and Go (TUG) test. Conclusion: Worse performance on the TUG test was only the patient-related predictor of distress among the variables examined as contributors to the higher NIoC. Enhancing the mobility of geriatric patients through suitably tailored kinesitherapeutic methods during their hospital stay may mitigate the burden endured by FCs. 

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Carers’ experience of memory screening tests

Background: Current evidence suggests that patients with dementia find memory tests humiliating and embarrassing. However, the knowledge concerning carers’ experience of witnessing patients with dementia undergo memory screening has not been fully explored.

Aims: This study was to explore the experiences of relatives of patients with dementia witnessing memory-screening tests.

Method: Eleven relatives of patients with dementia were recruited from three memory clinics using a purposive sampling method. A semi-structured questionnaire was used to collect data. The data was subjected to thematic analysis.

Results: The relatives appreciated the memory-screening tests as a diagnostic tool but the majority did not understand the questioning in the tests. Witnessing memory-screening tests generated anxiety in the relatives and they felt that memory screening tests were humiliating for patients.

Conclusion: A collaborative approach where the clinician, the patient and the relative(s) participate in the memory-screening tests is advised. Some relatives may benefit from counselling.

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A Brief, 6-Item Scale for Caregiver Grief in Dementia Caregiving

Caregivers of persons with dementia (PWD) can experience loss and grief long before the death of the person. Although such experience of caregiver grief is measurable, available scales (such as the Marwit–Meuser Caregiver Grief Inventory, MM-CGI) are lengthy and have overlaps with other caregiving constructs. We developed a briefer scale that captures the essence of caregiver grief—with comparable psychometric properties and total score to MM-CGI, as well as less overlap with other caregiving constructs. Family caregivers of community-dwelling PWD (N = 394) completed questionnaires containing MM-CGI and other caregiving scales. Initially, we split the study samples into two —the derivation sample (n = 179) was used to develop a brief scale that best predicts MM-CGI (using the best-subset approach with tenfold cross-validation), whereas the validation sample (n = 215) verified its actual performance in predicting MM-CGI. Thereafter, we evaluated the derived scale in its reliability and validity, and mapped its scores to MM-CGI using the equipercentile equating method.We derived a 6-item scale, which explained 84.1% of the variability in MM-CGI and had area under the receiver operating characteristic curve of .96 in discriminating high caregiver grief (95% CI: .94–.99). It had single dimension in confirmatory factor analysis (comparative fit index = .98; Tucker–Lewis index = .97) and maintained good psychometric properties similar to those of MM-CGI, while showing lower correlation with caregiver burden and depression. It also had scores that could be mapped to MM-CGI with reasonable precision. We developed the first brief scale with less than 10 items that can conveniently and accurately measure caregiver grief, which opens the way for grief-related interventions in clinical care. Notably, this 6-item scale was developed using rigorous methods and demonstrated consistent evidence of capturing the essence of caregiver grief.

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The impact of personal budgets on unpaid carers of older people

Summary: This paper focuses on the impact of a personal budget – either in the form of a direct payment or managed personal budget – on the role of unpaid carers of older budget holders. Data were collected via postal survey of 1500 unpaid carers and semi-structured interviews with 31 carers. Findings: Unpaid carers played a central role in supporting older budget holders irrespective of the type of budget received. The allocation of a personal budget may have decreased the amount of ‘hands-on’ care they provided, enabling them to do different things for and with the person cared for, but most did not relinquish direct involvement in care provision. Both kinds of personal budget provided greater flexibility to juggle caring tasks with other roles, such as childcare or paid employment. However, carers supporting direct payment users did experience higher levels of stress. This seemed linked to the additional responsibilities involved in administering the direct payment. Carers seemed relatively unsupported by their local Adult Social Care Department: the survey found that only one in five said they had ever received a carer assessment. Application: The findings offer a detailed exploration of the impact of personal budgets on carers, suggesting that even in countries with relatively well-developed systems of support for carers such as England their impact remains overlooked. The paper may be of interest to social work practitioners, managers, academics and social work policy specialists working in countries that have, or are about to introduce, personal budgets or other forms of cash-for-care scheme.

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Association of informal caregiver distress with health outcomes of community‐dwelling dementia care recipients: a systematic review

Background: Most dementia care occurs in the community with support from informal caregivers who are often distressed. Dementia caregiver distress is known to be hazardous to the caregiver's health, but the impact on the dementia care recipient is not well known. Methods: the Medline, Embase, PsycINFO, CINAHL, and Cochrane databases were searched from inception until June 2017 for studies investigating the association of informal caregiver distress with health outcomes of community‐dwelling dementia care recipients. The search results were screened and then data abstracted, and the risk of bias was appraised independently by pairs of reviewers. Results: 81 original investigations were included (n = 43 761 caregivers and dementia care recipients). Sixty‐six studies (81.5%) were observational or cross‐sectional in design, and 47 studies (58%) had a low risk of bias. There was considerable clinical and methodological heterogeneity precluding quantitative synthesis. Dementia care recipients (n = 21 881) had a mean age of 78.2 years (SD ± 3.8 y), half (50.0%) were women, and two‐thirds (66.1%) had Alzheimer's disease. The dementia caregivers (n = 21 880) had a mean age of 62.5 years (SD ± 23.3), three‐quarters (74.1%) were women, and one‐half (50.5%) were spouses of the dementia care recipient. Twenty‐two unique dementia care recipient outcomes were studied including cognition, mood, quality of life, function, healthcare utilisation, and costs. Overall, informal caregiver distress is commonly associated with the institutionalization of the dementia care recipient, worsening behavioural and psychological symptoms of dementia, and experiencing elder abuse. Conclusion: Informal caregiving is a cornerstone of dementia care, and distress related to this role is associated with worsening of several dementia care recipient health outcomes. It is important that clinicians and researchers worldwide consider the broader consequences of caregiver distress.

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The family caregiver experience – examining the positive and negative aspects of compassion satisfaction and compassion fatigue as caregiving outcomes

Objectives: Caregiving results in both positive and negative outcomes for caregivers. The purpose of this study was to examine compassion fatigue and compassion satisfaction in family caregivers. Methods: Using a cross sectional descriptive survey design with a convenience sample, 168 family caregivers of individuals with chronic illness completed a web-based survey. Measures included a demographic questionnaire, Caregiver Burden Interview, Brief COPE inventory and Professional Quality of Life (ProQOL). Results: The majority of participants (71%) reported high levels of caregiver burden, moderate to low levels of the compassion fatigue concepts of burnout (59.5%) and secondary traumatic stress (STS) (50%), and moderate levels of compassion satisfaction (82.7%). Regression analyses showed that caregiver burden, time caregiving, coping, social support, and caregiving demands explained a total variance of 57.1%, F(11,119) = 14.398, p < .00 in burnout and a total variance of 56%, F(11, 119) = 13.64, p < .00 in STS. Specifically, behavioural disengagement is a predicator that may indicate early compassion fatigue. Conclusion: Findings suggest that despite high caregiver burden and moderate compassion fatigue, family caregivers are able to provide care and find satisfaction in the role. This study supports the use of compassion fatigue and compassion satisfaction as alternative or additional outcomes to consider in future research.

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Episodic memories of relationship quality, procedural knowledge of attachment scripts, and the experience of daughters caring for a parent with dementia

A caregiver’s attachment history with their parents may affect the thoughts, feelings, and behaviour they now have as they care for a parent with dementia. Participants were 77 daughters of a parent with dementia. The nature of participant conscious episodic memories of their parental figures and unconscious procedural knowledge of caregiving processes (secure base script knowledge) were identified as two aspects of the caregiver’s relationship history that may impact their involvement in care, relationship conflict, critical attitudes, and strain. The authors findings indicated that the nature of episodic memories of the caregiver relationship history with parental figures were significantly associated with stress and criticism of their parent. Greater unconscious procedural knowledge of the secure base script was associated with caregiver report of less conflict and less involvement in the caregiving tasks. Potential clinical implications of this pattern are also discussed.

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Subjective wellbeing amongst informal caregivers of people with wounds: A cross-sectional survey

Objective: The present study investigated subjective wellbeing amongst informal caregivers of people with wounds. Although under-investigated in the wound care literature, prior research indicates that informal caregiving results in a series of poorer outcomes for the caregiver. Methods: A convenience sample of 57 caregivers (16 male, 41 female, 19-84 years old), was recruited from public outpatient facilities. Participants completed measures of caregiving satisfaction, and subjective wellbeing, in addition to characteristics about themselves and the care provided. Results: The informal caregivers of people with wounds scored significantly lower on a measure of subjective wellbeing than the Australian population to a large effect (d = 1.11). Negative associations were identified between sleep and subjective wellbeing, while positive associations were found between caregiving satisfaction, and relationship quality with subjective wellbeing. Discussion: Caregivers displayed lower subjective wellbeing than the general population. Subjective wellbeing was related to sleep, satisfaction, and relationship quality. Future research should compare outcomes of the caregivers of people with different forms of wounds, and should determine if correlating stressors and mediators are causal to wellbeing.

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Predicting personal self-care in informal caregivers

Caregiver research often focuses on negative health outcomes, yet little is known about the self-care practices of caregivers. The present study investigates self-care practices among family caregivers and the relationships between personal self-care, perceived stress, and other health variables. Data were collected from informal caregivers through self-administered Internet and paper surveys that included the Medical Outcomes Study Short Form 36-item Health Survey, Perceived Stress Scale, and Self-Care Practices Scale. Personal self-care was most strongly associated with emotional well-being, pain, perceived stress, and general health. The relevance of study findings to strengthening family caregiver programs and future research is discussed. 

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Gratitude and coping among familial caregivers of persons with dementia

Objectives: Gratitude is widely perceived as a key factor to psychological well-being by different cultures and religions. The relationship between gratitude and coping in the context of familial dementia caregiving has yet to be investigated. Design: This study is the first to examine the associations among gratitude, coping strategies, psychological resources and psychological distress using a structural equation modelling approach. Results: Findings with 101 Chinese familial caregivers of persons with dementia (mean age = 57.6, range = 40–76; 82% women) showed that gratitude was related to the greater use of emotion-focused coping (positive reframing, acceptance, humour, emotional social support seeking, religious coping) and psychological resources (caregiving competence and social support). Psychological resources and emotion-focused coping in turn explained the association between gratitude and lower levels of psychological distress (caregiving burden and depressive symptoms). Conclusion: The present results indicate the beneficial role of gratitude on coping with caregiving distress and provide empirical foundation for incorporating gratitude in future psychological interventions for caregivers.

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General and proximal associations between unpaid eldercare, time constraints and subjective well-being

Population ageing requires understanding the implications of eldercare. Using American Time Use Surveys, the authors find that caregivers spend less time on personal care and social activities/sports, and more time on housework, than individuals who do not provide any eldercare. They also report higher stress and lower happiness. In addition, caregivers may not provide care every day, but on days when they do, they also spend more time on housework and less on paid work, and report higher levels of sadness than on days when they do not provide care. Regular caregivers experience worse wellbeing than non-caregivers, but also experience additional strain on days when they provide care.

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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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Family caregiving and compassion fatigue: A literature review

As the population ages, there is a growing need for families and friends to support frail older adults in their home. Although many family caregivers report feeling satisfied with their caring role, a growing number of caregivers also feel physically, emotionally, and financially drained by the experience. The purpose of this literature review is to explore the experience of compassion fatigue (CF) among family caregivers, and to suggest strategies to combat this possible consequence of caregiving. A literature search was conducted using the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PubMed, and ProQuest databases. In total, six English peer reviewed articles related to CF and family caregiving were identified for review. Although there are few studies available on this topic, the literature suggests that CF is a concern for this group of caregivers. Caregivers were found to be consumed by a sense of responsibility to support their relatives, and they showed signs of hopelessness, guilt, resentment, and social isolation. To combat CF, we advocate implementing a systems management approach, which would bring together all healthcare stakeholders to support family caregivers and those they care for.

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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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Caregiver determinants of patient clinical event risk in heart failure

Background: Preventing hospitalization and improving event-free survival are primary goals of heart failure (HF) treatment according to current European Society of Cardiology guidelines; however, substantial uncertainty remains in our ability to predict risk and improve outcomes. Although caregivers often assist patients to manage their HF, little is known about their influence on clinical outcomes. Aims: To quantify the influence of patient and caregiver characteristics on patient clinical event risk in HF. Methods: This was a secondary analysis of data using a sample of Italian adults with HF and their informal caregivers (n = 183 patient–caregiver dyads). HF patients were followed over 12 months for the following clinical events: hospitalization for HF, emergency room visit for HF or all-cause mortality. Influence of baseline caregiver- and patient-level factors (patient and caregiver age; dyad relationship type; patient New York Heart Association (NYHA) Class, cognition, and comorbidities; and caregiver strain, mental health status, and contributions to HF self-care) on patient risk of death or hospitalization/emergency room use was quantified using Cox proportional hazards regression. Results: Over the course of follow up, 32.8% of patients died, 19.7% were hospitalized for HF and 10.4% visited the emergency room. Higher caregiver strain, better caregiver mental health status and greater caregiver contributions to HF self-care maintenance were associated with significantly better event-free survival. Worse patient functional class and greater caregiver contributions to patient self-care management were associated with significantly worse patient event-free survival. Conclusion: Considering caregiving factors together with patient factors significantly increases our understanding of patient clinical event risk in HF.

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Symptom burden and life challenges reported by adult chordoma patients and their caregivers

Purpose This study aims to characterize the symptom burden and life challenges that chordoma patients and their caregivers experience. Methods In this cross-sectional study, we analyzed data from the Chordoma Foundation online community survey conducted in 2014. Frequency counts and percentages were calculated to determine the prevalence of self-reported symptoms and life challenges in the sample. We used Fisher's exact test to compare self-reported symptoms among subgroups with different disease status, tumor locations, and treatments received. Results Among the survey participants, 358 identified themselves as chordoma patients and 202 as caregivers. The majority of the patients were over 45 years (72%), male (56%), educated beyond high school degree (87%), and from North America (77%). Skull base was the most prevalent tumor location (40%). Chronic pain (35%) was the most commonly reported symptom followed by depression or severe anxiety (32%) and chronic fatigue (31%). Among patients, the most commonly reported challenges included delayed care (37%), long-term disability (33%), and confusion or unanswered questions about chordoma (28%). For caregivers, grief (55%), delayed diagnosis (47%), and difficulty helping the patient cope with his or her disease (45%) were most common. Conclusions Our study findings suggest a high symptom burden and life challenges among chordoma patients and their caregivers. This study provides preliminary, limited estimates of the prevalence of a wide range of self-reported symptoms and challenges that will inform the assessment of patient-reported outcomes in future clinical trials and help clinicians better manage chordoma patients' symptoms.

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Assessment of the mental health of carers according to the stage of patients with diagnosis of Alzheimer-type dementia

In this study, the aims were to assess the mental health state of carers for patients with Alzheimer-type dementia (AD) according to stage of disease and to collect data with the aim of determining precautions to reduce the load of the patient and disease on the carer. The study included 120 patients with stages determined, according to the clinical dementia rating scale (CDR), and 120 patient relatives above the age of 18 who cared for these patients every day, for the whole day or part of the day, and who accepted participation in the research. This prospective and cross-sectional study performed a detailed neurological examination of patients, and after completing the “personal information form” with the interviewer, each patient had CDR and mini-mental test (MMSE) applied to determine stage of dementia and physical state. Carers first completed the “personal information form” and then had the short symptom inventory (SSI) applied. According to the stage of patients, there were significant differences determined in the points for all sub-scales belonging to the SSI of carers. As the disease stage increased, all sub-scale points for the SSI increased. With the transition of disease stages from 0.5–1 to stage 2, from stage 2 to 3, and with the inverse reduction in MMT scores, the points obtained by carers on the SSI sub-scales increased. This data shows that with progressing disease stage, the load on the carer increases and mental health begins to dysfunction.

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Patterns of carer distress over time in mild dementia

Objective To study the level of carer reported distress in mild dementia, over a 3‐year period. Methods This study is part of the Norwegian DemVest‐study and utilises data from carers of people with mild dementia (n = 223). Those diagnosed with dementia with Lewy bodies (DLB, n = 63) and Alzheimer's disease (AD, n = 97) were included together with other dementia types (n = 63). The Relatives' Stress Scale was used to assess the level of reported distress in carers. Descriptive and a linear mixed effects models including diagnosis, time, and the interaction between time and diagnosis were performed. Results Carer distress in mild dementia increased significantly over time (P = 0.011), particularly from baseline until 2 (P = 0.001) years follow‐up. Carer distress in people caring for those with AD increased significantly, from baseline until 2 (P = 0.047) and 3 (P = 0.019) years follow‐up. Distress in carers of people with DLB was high at baseline and remained relatively stable across the 3‐year period. However, admission to a nursing home during the first year of follow‐up was associated with a significantly lower reported carer distress in those caring for a person with DLB (P = 0.002), compared with those caring for a person with DLB living at home. Conclusion Being a carer to a person with mild dementia is associated with increasing distress. However, the burden of distress changes with the diagnosis, time, and situation, which highlights the dynamic nature of the caring role. Findings have important implications for health services for people diagnosed with mild dementia and their carers.

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Caregiving Stress Among American Indians With Type 2 Diabetes: The Importance of Awareness of Connectedness and Family Support

American Indian (AI) communities experience a disproportionate rate of Type 2 diabetes (T2D) and cumulative exposure to stress. Although this link is well researched among various populations, it has not been examined among AI communities. Path analysis was used to examine a multiple-mediator model to explain how caregiver stress influences self-reported mental and physical health among 100 AI participants with T2D. Caregiver stress was negatively associated with physical and mental health. Physical health was positively associated with family/community connectedness and mental health was positively associated with both family support and connectedness. The relationship between caregiver stress and mental health was partially mediated by family/community connectedness; caregiver stress had no indirect effects on physical health via either hypothesized mediator. Findings demonstrate the importance of integrating individuals’ connection to family and community and its influence on caregiver stress and mental health in intervention programs targeting diabetes management and care among AI communities.

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Young Adult Carers: The Impact of Caring on Health and Education

Research has shown that young people who care for parents and relatives (young carers and young adult carers) are at greater risk of mental and emotional difficulties and are more likely to do badly at school or college. To explore the difficulties faced by young adult carers (aged 14–25) in the UK, an online survey was conducted. Almost half (45%) of the 295 respondents reported having a mental health problem. The relationship between the extent of caring and perceived mental health problems and the impact of caring responsibilities on work and education were investigated.

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Stress, stress-related symptoms and social support among Taiwanese primary family caregivers in intensive care units

Objectives To explore the associations between stress, sleep disturbances, fatigue severity and social support among primary family caregivers in intensive care units during the early period of ICU hospitalisation.Design Cross-sectional, descriptive correlational study.Setting Intensive Care Units in a teaching hospital in Taiwan.Main outcome measures Perceived stress (Impact of Events Scale-Revised), sleep disturbances (General Sleep Disturbance Scale), fatigue severity (Lee’s Fatigue Scale), social support (Norbeck Social Support Questionnaire) and one open-ended question.Results The primary family caregivers (N = 87) were distressed and experienced poor sleep quality and fatigue during the early period of ICU hospitalisation. Primary family caregivers have various social support needs but being updated on the patients’ prognosis was at the top of the list. Perceived ICU hospitalisation stress was the only significant predictor for fatigue while age along with perceived event stress were the significant predictors for sleep disturbances.Conclusion Stress-coping interventions are needed to reduce stress-related symptoms for the primary family caregivers. Social supports did not buffer stress in this study, which calls for further research to explore the culture variance and quality of social support.

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Medication administration by caregiving youth: An inside look at how adolescents manage medications for family members

Introduction: Children take on the role of family caregiver throughout the world. No prior published research exists surrounding the particular circumstances of the task of medication administration and management by these youth, which was explored in this study. Methods: A series of focus groups were conducted using semi-structured interviews of 28 previously identified caregiving youth ages 12–19 years old who live in the United States. Data analysis followed guidelines of conventional content analysis. Results: The following categories emerged about youth caregivers handling medications: 1) tasks involve organizational and administrative responsibilities; 2) youth have varying degrees of knowledge pertaining to these medications; 3) most share responsibility with other family members; 4) they lack formal education about their responsibilities; 5) multiple challenges exist relating to this task; 6) managing medications is associated with emotional responses; and 7) possible safety issues exist. Conclusions: These responsibilities represent a unique hardship and merit support and research from the medical, healthcare, legislative, and public health communities, among others.

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The coping experiences of spouses of persons with dementia

Aims and objectives: To explore how spouses who are caregivers to persons with dementia experience everyday life 6–12 months after participation in the intervention condition in the Norwegian Cognitive Behavioural Therapy for Early Dementia (N‐CORDIAL) study. Background: There is no current medical curative treatment for cognitive impairment and dementia‐associated conditions. These conditions will lead to an increased need for daily assistance and care, as well as greater stress for caregivers. The Norwegian CORDIAL Study is a manual‐based randomised controlled trial based on the German CORDIAL study (cognitive rehabilitation and cognitive behavioural treatment for early dementia in Alzheimer's disease), consisting of cognitive rehabilitation, cognitive behavioural therapy and life review methods. Design and methods: A descriptive exploratory study with qualitative semi‐structured in‐depth interviews with six spouses of persons with dementia who had participated in the Norwegian CORDIAL study. The transcribed text was analysed by systematic text condensation. Result: The main theme identified, “An everyday search for meaning,” referred to the stress experienced by the caregivers and their coping strategies in everyday life. Conclusion: The caregivers had gained increased awareness of coping strategies in everyday life 6–12 months after the intervention. Caregivers who experienced fewer neuropsychiatric symptoms in their spouses with dementia benefitted most from the intervention. Relevance to clinical practice: The study is relevant to clinical practice as interventions focusing on how to improve coping strategies may reduce caregiver stress and contribute to postponement of nursing home placement.

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"Something that happens at home and stays at home": An exploration of the lived experience of young carers in Western Australia

There are approximately 350,000 young carers in Australia, yet their experience is not well understood. Young carers face adversities and disenfranchisement by being a young person in a caring role, and the role can affect other areas of their lives. We explored the lived experiences of young carers, aged 14-25 years (N = 13), from Western Australia through in-depth semi-structured interviews. A phenomenological approach was adopted. A thematic analysis of the transcribed interview data revealed four key themes. "Lessons from the experience" articulates the perceived benefits of the role and the themes: "navigating competing demands," "desire for normalcy" and "lost in the system" capture the struggles and complexities associated with being a young carer. Although there are challenges to being a young carer, it is something that young carers report can be beneficial and something that is done for those they love.

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The experience of palliative care service provision for people with non-malignant respiratory disease and their family carers: An all-Ireland qualitative study

Aim: To explore specialist and generalist palliative care provision for people with non‐malignant respiratory disease, in rural and urban areas in the North and Republic of Ireland. Background: Globally, palliative care is recommended as an appropriate healthcare option for people with advanced non‐malignant lung disease. Yet, there is limited evidence regarding the integration of palliative care for this client group. Design: Qualitative study. Methods: Convenience sample of 17 bereaved carers and 18 healthcare professionals recruited from two rural and two urban sites on the Island of Ireland. Data were collected throughout 2012 and 2013 through semi‐structured interviews with carers of patients with Chronic Obstructive Pulmonary Disease (N = 12), interstitial lung disease (N = 4) or bronchiectasis (N = 1) who had died 3–18 months previously; and four focus groups with healthcare professionals. Data were analysed using a thematic analysis framework. Results: Carers’ interviews yielded three overarching themes: (1) lack of preparedness for death, due to ambiguity regarding disease trajectory; (2) lack of consistency in palliative care delivery, in relation with the receipt of generalist and specialist palliative care; and (3) role ambiguity, related to their caregiving role. Focus groups identified two overarching themes: (1) barriers to appropriate palliative care; and (2) the future direction of palliative care for patient with non‐malignant respiratory disease. Conclusion: The uncertain disease trajectory was not only experienced by carers but also healthcare professionals. Although referral to specialist palliative care services was perceived as increasing, the availability and coordination of generalist and specialist palliative care services were fragmented and varied dependent on geographical location.

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What effect does delirium have on family and nurses of older adult patients?

Objectives: This study aims to analyse the level of distress caused by delirium in patients' family and their nurses, and to identify factors associated with psychological distress in families of older adult inpatients in Intermediate Care Units/IMCUs regarding their global experience during hospitalization. Method: A prospective pilot study was carried out with families and nurses of older adult patients (≥65 y.o.) consecutively recruited from two IMCUs in Intensive Care Medicine Service in a University Hospital. Patients with Glasgow Coma Scale ≤11, brain injury, blindness/deafness and inability to communicate were excluded. Delirium was daily assessed with Confusion Assessment Method/CAM. The distress level regarding this episode in family and nurses was measured with Delirium Experience Questionnaire/DEQ. Family psychological distress of all recruited patients was assessed with Kessler Psychological Distress Scale/K10. Results: This study included 42 inpatients (mean age/MA = 78 y.o., 50% women), 32 families (68.8% sons/daughters, MA = 50.6 y.o., 81.3% women) and 12 nurses caring for delirium patients (MA = 33 y.o., all women). A total of 12 (28.6%) patients had delirium. Distress related to this episode were higher for families than for nurses (M = 3 vs. M = 2), but differences did not reach statistical significance (Z = –1.535, p = 0.125). The hierarchical regression model explained 44.3% of variability in family psychological distress. Higher levels of psychological distress were associated with living with the patient (p = 0.029), presence of previous cognitive decline (p = 0.048) and development of delirium (p = 0.010). Conclusion: These preliminary results show that family psychological distress is higher, when older adult patients developed delirium during hospitalization. Particular attention to these family carers should be given in future development of psychological support and psychoeducational interventions.

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The moderating role of the amount of caregiving tasks on the relationships between dementia caregivers’ characteristics and outcomes

Aim This study identified the moderating role of the amount of caregiving tasks on relationships between dementia family caregivers’ characteristics (age, education, etc.) and outcomes (burden, etc.). Design A cross‐sectional analysis of surveyed data. Method A convenience sample of 369 family caregivers (151 males, 218 females) aged 20 years or older was recruited from 10 cities in the southern area of South Korea. Data were collected from November–December 2011. Measures of caregiver burden, perceived health status and emotional distress of caregivers related to the memory‐behaviour problems of the care recipient were used to assess the outcomes of family caregivers of older adults with dementia. Results The amount of caregiving tasks has a moderating effect on the relationships between caregivers’ characteristics (such as living with the recipient and duration of caregiving) and the caregiver burden. The interaction between the amount of caregiving tasks and status of living with recipient was significant in relation to the emotional distress of caregivers related to the memory‐behaviour problems of the care recipient with dementia; however, there was no effect of the amount of caregiving tasks on the relationships between caregivers’ characteristics and perceived health status. Conclusion The amount of caregiving tasks can have a moderating role in the caregiving stress model. Intervention programs need to be developed and implemented to reduce negative outcomes of family caregivers, particularly those living with older adults with dementia.

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Caregiving, Employment and Social Isolation: Challenges for Rural Carers in Australia

Australia has one of the world’s highest life expectancy rates, and there is a rapidly growing need for informal caregivers to support individuals who are ageing, have chronic illness or a lifelong disability. These informal carers themselves face numerous physical and psychological stressors in attempting to balance the provision of care with their personal life, their work commitments and family responsibilities. However, little is known about the specific challenges facing rural carers and the barriers that limit their capacity to provide ongoing support. A cross-sectional survey composed of open-ended responses and demographic/socioeconomic measures used routinely by the Australian Bureau of Statistics (ABS) and the Australian Institute of Health & Welfare (AIHW) was used with a cohort of 225 rurally-based carers within New South Wales, Australia. Demographic questions specified the respondents’ age, gender, employment, caregiving status, condition of and relationship to the care recipient, postcode, residency status, and distance and frequency travelled to provide care. Open-ended comments sections were provided to allow participants to describe any issues and problems associated with caregiving including employment, travel, residency, carer support groups and any other general information. The results show that most rural carers were middle-aged women supporting a spouse or a child. Unpredictability associated with providing care exacerbated demands on carers’ time, with many reporting significant employment consequences associated with inflexibility and limited job options in rural locations. Specific issues associated with travel requirements to assist with care were reported, as were the impacts of care provision on the respondents’ own personal health. The majority of carers were aware of the social supports available in their local rural community, but did not access them, leaving the carers vulnerable to marginalisation. Problems associated with employment were noted as resulting in financial pressures and associated personal stress and anxiety for the caregivers. While this issue is not necessarily limited to rural areas, it would appear that the lack of opportunity and flexibility evident in rural areas would exacerbate this problem for non-metropolitan residents. The participants also identified specific barriers to the provision of care in rural areas, including the significant impact of travel. Access to support services, such as carer groups, were rarely accessed due to a mix of factors including inaccessibility, poor timing and a lack of anonymity. Financially, there was considerable evidence of hardship, and there is an urgent need for a comprehensive review of government and community-based support to better meet the needs of rural carers.

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Providing care for a person with late-stage dementia at home: What are carers' experiences?

Background It is widely reported that carers who provide care for a family member with dementia endure physical and psychological burdens. Not only do they fulfil an important role for the person with dementia but also for the wider society. This study aims to explore the experiences of carers who provide end-of-life care for a person with late-stage dementia at home. Method Semi-structured interviews were conducted with 17 current carers and 6 past carers of a family member with late-stage dementia. Data was analysed using interpretative phenomenological analysis. Results Four super-ordinate themes were identified which described the challenges faced by carers at different stages of their care giving journey: (1) The experience of dementia grief (2) Parenting the parent (3) Seeking support (4) Death, dying and life after death. Conclusion Dementia grief was experienced by carers as a result of a relationship change and an inability to recognise the person with dementia as their mother, father or spouse. A role transition ensued resulting in the carer adopting the role of parent. Carers expressed a desire to provide care for the person with dementia at home until the time of death however, support is required in this area at both individual and community level. Family carers require education to help identify the dying phase which will assist to minimise the shock of death. Strong evidence suggests that the burden of care may leave family carers poorly equipped to adapt to life after the death of the person with dementia. Greater pre-death support is required to facilitate a better post bereavement adjustment.

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The chronic sorrow experiences of caregivers of clients with schizophrenia in Taiwan: A phenomenological study

Purpose :The aim of the article is to explore the chronic sorrow experiences of the caregivers of clients with schizophrenia in Taiwan. Design and Methods: Descriptive, phenomenological, and purposive sampling and one‐to‐one, in‐depth, and unstructured interviews were used. Data saturation was achieved after interviewing 12 participants. Narratives were analyzed using Colaizzi's (1978) method. Findings: Three themes and eight subthemes emerged, including encountering sorrow (disordered life, disintegrated self‐esteem, little prospect for hope, and collapsed sense of security), talking with sorrow (cognitive change and transformation of action), and living with sorrow (living with defects and living with responsibilities). Practice Implications: Advanced practice psychiatric nurses should take the emotional stability of caregivers into consideration. Caregivers should be encouraged and taught effective culture‐oriented strategies for living with sorrow.

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'Between a rock and a hard place': family members' experiences of supporting a relative with bipolar disorder

Purpose: Clinical guidelines emphasise the central role of family members in supporting people with bipolar disorder. However, there has been little focus on the challenges family members face in supporting their relative. This qualitative study explored the challenges of providing support to a relative with bipolar disorder, and how family members attempted to meet these challenges. Factors that helped or hindered their efforts were also explored, including experiences of professional support. Methods: Semi-structured interviews were conducted with 18 family members (partners, parents, adult children, and siblings). Transcripts were analysed using the Framework approach. Results: Participants faced numerous challenges pertaining to the nature of the disorder and specific illness phases, their relative’s responses to their attempts to help, and the limitations of support from healthcare professionals. Although participants were resourceful in managing these challenges, they strongly valued professional input. Six themes were identified: ‘Not knowing: like being in a minefield’, ‘It’s out of my control: sitting waiting for the next thing to happen’, ‘Treading on eggshells’, ‘Picking up on signs’, ‘Times of crisis: between a rock and a hard place’, and ‘I have to make my voice heard’. Conclusions: Family members supporting a relative with bipolar disorder face significant challenges but show considerable resourcefulness in managing them. The findings underline the importance of input from healthcare professionals to help family members effectively support their relative and manage the challenges they face. Professional support should be strengths-based, and tailored to family members’ needs.

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The Effect of a Brief Cognitive Behavioural Stress Management Programme on Mental Status, Coping with Stress Attitude and Caregiver Burden While Caring for Schizophrenic Patients

This experimental study was carried out using a pre-test/post-test control group model to evaluate the effect of a "Brief Cognitive Behavioural Stress Management Programme" (BCBSMP) on mental status, coping with stress attitude, and caregiver burden while caring for patients with schizophrenia. A total of 61 caregivers who provided care for schizophrenia patients at a community mental health centre were included in the study. Caregivers were matched according to gender and scale scores and were assigned to either the study or the control group. Before and after the programme, caregivers in both groups were given the "Demografic Data Form", "Zarit Caregiver Burden Scale", "Coping Attitude Evaluation Scale", "Stress Indicators Scale", and the "General Health Survey-28". Caregivers in the study group were taken to a BCSMP one session per week (each session lasted 120min) for seven weeks. We determined that the stress indicators, the risk of developing a psychological disorder, and caregiver burden decreased and skills related to both the problem-oriented and emotion-oriented aspects of stress increased in the study group after the programme.

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Exploring experiences of informal carers of mental health: Developing community intervention in social work in Jordan

The purpose of this article is to generate meaningful understanding of the mental health informal carers’ experience and to identify a possible approach to social work intervention. A mixed method of quantitative and qualitative analysis was used for data collection. The findings reveal that most of the informal carers are female adult. They experience stress, domestic violence, social exclusion as a result of the caring role, and fear of stigma. Cultural and religious factors must be considered when translating the caring role. The findings suggest implications for social work practice at a community level, utilizing a familial and support-group approach, with a practice that is sensitive to gender and religion.

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Behind the smile: qualitative study of caregivers' anguish and management responses while caring for someone living with heart failure

Background Caregivers support self-management in heart failure but often experience stress, anxiety and ill health as a result of providing care. Aims 1. To identify the factors that contribute to the experience of anguish. 2. To understand how caregivers learn to live with what is frequently a challenging and demanding role. Methods Individual interviews with caregivers who had been caring for someone with heart failure for a minimum of 6 months. We used thematic analysis to inductively analyse transcripts. Results Twenty-two caregivers, from three centres in the United Kingdom, took part in individual interviews. The caregivers were aged between 39 and 84 years, and six were men. Twenty were in spousal or partner relationships. We found that caregivers often hide the extent of their emotional stress or anguish. We identified four main themes with explanatory subthemes—emotional impact (fear for the future and sense of hopelessness), role definition (changing sense of who I am, reduced resilience, learning care skills, role conflict and changing role), exclusion (exclusion by the cared-for person and by health professionals and feeling alone) and ignoring one’s own health—that were associated with anguish. From these findings, we produced a caregiver needs assessment model in the context of caring for a person with heart failure. Conclusions and implications for practice Caregivers have many unmet and hidden needs. Primary care health professionals are well placed to meet the needs of caregivers. The model may be used by health and social care professionals to identify needs and to provide caregivers with targeted practical and emotional support; and for researchers developing interventions to enhance self-management in heart failure.

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The Trial of Ascertaining Individual Preferences for Loved Ones' Role in End-of-Life Decisions (TAILORED) Study: A Randomized Controlled Trial to Improve Surrogate Decision Making

Context Patients with terminal illnesses often require surrogate decision makers. Prior research has demonstrated high surrogate stress, and that despite standards promoting substituted judgment, most patients do not want their surrogates to make pure substituted judgments for them. It is not known how best to help loved ones fulfill the surrogate role. Objectives To test the effectiveness of an intervention to help surrogate decision makers. Methods One hundred sixty-six patients (41% with amyotrophic lateral sclerosis and 59% with gastrointestinal cancers) and their surrogates at two university medical centers were randomized to an intensive nurse-directed discussion of the end-of-life decision control preferences of the patient (TAILORED) or a discussion of nutrition (CONTROL) 163 completed baseline interviews and underwent the intervention. Results Twelve patients died during follow-up and 137 dyads completed the study. Post-intervention, using all available data, TAILORED patients and surrogates became more likely to endorse mutual surrogate decision making, that is, a balance of their own wishes and what the surrogate thinks best (adjusted odds compared with baseline for patients = 1.78, P = 0.04 adjusted odds for surrogates = 2.05, P = 0.03). CONTROL patients became 40% less likely to endorse mutual surrogate decision making (P = 0.08), and CONTROL surrogates did not change significantly from baseline (adjusted odds = 1.44, P = 0.28). Stress levels decreased for TAILORED surrogates (impact of events scale = 23.1 ± 14.6 baseline, 20.8 ± 15.3 f/u, P = 0.046), but not for CONTROL (P = 0.85), and post-intervention stress was lower for TAILORED than CONTROL (P = 0.04). Surrogates' confidence was uniformly high at baseline and did not change. Caregiver burden (Zarit) increased from 12.5 ± 6.5 to 14.7 ± 8.1 for TAILORED (P < 0.01), while not changing for CONTROL, yet satisfaction with involvement in decision making was higher at follow-up for TAILORED than for CONTROL (71% vs. 52%, P = 0.03). Conclusion TAILORED patients and surrogates who completed the study adopted a more mutual decision-making style, balancing their own wishes with what the surrogate thinks would be best for them. Surrogates reported less stress and more satisfaction. Confidence was high at baseline and did not change. There was a modest increase in caregiver burden. These findings suggest that interventions like TAILORED might positively impact surrogate decision making.

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Life Interrupted: The Trauma Caregiver Experience

Traumatic injury frequently leads to an abrupt change in physical and psychological functioning; informal caregivers play a significant role in the recovery process in the hospital and at home. The purpose of this study was to describe the range of stressors and burdens experienced by orthopedic trauma family caregivers in the acute care setting, as well as responses and strategies employed. Qualitative, in-depth interviews were conducted in the hospital with 12 family caregivers of severely injured orthopedic trauma patients. Interviews were audiotaped, transcribed, and analyzed to identify the range of experiences and common themes. Data were organized into 4 categories: stressors and needs; barriers; resources; and response. Stressors and barriers included the confusion and turmoil of life in the hospital, exposure to tragedy, difficulty obtaining and understanding information, and a sense that the family was not considered an integral part of the care plan. Factors influencing caregiver coping included access to the patient, provider communication, caregiver internal and external resources, and the presence of staff assisting in negotiation of the complex and unfamiliar hospital system. Understanding the caregiver experience enables nursing providers to build trust and offer effective support and guidance; caregiver-centered systems of information from admission to discharge may facilitate adaptation and improved caregiving.

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Family caregiving of individuals with traumatic brain injury in Botswana

Background The impairments that affect survivors of TBI impact the person’s independence, and family members frequently have to take on a caregiver role. This study examined the experience of caregiving for individuals with TBI in Botswana and its impact on psychological distress in caregivers. Methods Using a mixed methods study design, qualitative data from semi-structured interviews were thematically analyzed and triangulated with data regarding functional status from the Structured Head Injury Outcome Questionnaire and the Hospital Anxiety and Depression Scale (HADS). Results The study included 26 participants with moderate to severe TBI, and a total of 18 caregivers were recruited. Caregivers commonly reported receiving limited information regarding their relatives’ injuries and management methods. Heavy caregiving demands were placed on them, with little support from the healthcare system. A significant proportion of caregivers experienced anxiety and depression, which was associated with lower functional independence in their injured relative. Somewhat more spouses than parents reported clinically significant anxiety levels. Other consequences of caregiving included social isolation and limited support from the wider community as well as financial difficulties. Despite these stresses caregivers tended to accept their caregiving role. Cultural factors such devotion to their families and faith and belief in God moderated burden and distress. Conclusions Carers of individuals with TBI in Botswana face significant challenges. Rehabilitation efforts need to take these into account. Specifically, more information and support needs to be provided to survivors and their families. Psychological, economic and health needs of the care providers also should be addressed in the planning of rehabilitation interventions.

Implications for Rehabilitation

  • Caregivers of individuals with TBI in under-resourced countries carry much of the burden of care, face many challenges and experience significant stress. 
  • More information and support needs to be provided to survivors of TBI and their families in countries such as Botswana in a culturally sensitive manner.
  • Psychological, economic and health needs also need to be addressed in the planning of rehabilitation interventions, which are currently non-existent in Botswana.
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Young adults with severe intellectual disability: Culture, parent, and sibling impact

Background Having a child with intellectual disability impacts all family members, with both parents and siblings having to adjust. Negative impact on the typically developing sibling, specifically, has been shown to vary based on caregiving responsibilities and mothers' stress level. Method This study gathered information from 238 Latina and Anglo mothers of young adults with intellectual disability to explore sibling negative impact related to maternal stress, positive feelings about parenting, sibling diagnostic category, and cultural group. Results Mothers experiencing more stress reported higher levels of sibling impact mothers with more positive feelings about parenting reported lower levels of negative impact, with Latina mothers reporting higher levels of stress and positive feelings about parenting. Anglo mothers, however, were less likely to designate a sibling as a future caregiver. Conclusions These findings suggest culture and diagnostic classification should be given more attention relative to their impact on typically developing siblings.

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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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Family Caregiving in Critical Illness: Research Opportunities and Considerations

Family caregivers provide essential support, information, and surrogate decision making for critically ill patients and are recognized as important care partners with the clinical team in the intensive care unit (ICU). Unfortunately, many family members who assume a caregiving role during critical illness also experience the detrimental effects of this stressful life event. 

This is an exciting time for family caregiver research and nursing research leadership in the ICU. Nursing acknowledges the importance of families and has led research in family-centered care. The needs of critically ill patients and their families are enormous and adequately tested interventions to improve outcomes and health are few. Research led by nurses can improve lives of ICU patients and their families.

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Images of suffering depicted in diaries of family caregivers in the acute stage of necrotising soft tissue infection: A content analysis

Objectives Severe necrotising soft tissue infections (NSTI) are rare life threatening rapidly progressing bacterial infections requiring immediate diagnosis and treatment. The aim of the study was to explore the experience of family caregivers of patients with necrotising soft tissue infection during the acute stage of disease. Methods Our study had a qualitative descriptive binational design using qualitative content analysis to explore diaries written by close family members (n=15). Participants were recruited from university hospitals in Denmark and Sweden. Findings Three main categories emerged: Trajectory, Treatment, and Patient & Family. The first helped us construct an overview of the NSTI trajectory showing issues of importance to patient and family caregivers. The following categories were analysed further to describe four themes central to the family caregiver experience: craving information, needing to be near, suffering separation and network taking over. Conclusions Necrotising soft tissue infections are uncommon causing shock and concern. Centralised treatment might involve physical separation of patient and family during the acute stage of illness. Family accommodations near the patient and accessibility to adequate communication devices at the bedside are recommended. Health professionals need to keep in mind the importance of information and reassurance on the wellbeing of the family and ultimately of the patient.

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Achieving positive outcomes in complex cases: The Admiral Nurse Dementia Helpline (Innovative Practice)

Carer distress is an all too common factor in caring for someone with dementia, whether living with the person with dementia, or trying to maintain their independence when they are living alone. Providing support for families on many day-to-day issues with immediacy as and when they arise can be very difficult to achieve for services on the ground as carer need can be difficult to anticipate as well as the changing status of the person with dementia. This paper discusses the innovative role of managing complexity on a dementia telephone helpline manned by Admiral Nurses, specialist dementia nurses, in expertly supporting a family over a weekend where there were health concerns of a family member with dementia and a high level of carer distress.

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The impact of cardiac arrest on the long-term wellbeing and caregiver burden of family caregivers: a prospective cohort study

Objective: The purpose was to gain insight in the functioning of caregivers of cardiac arrest survivors at 12 months after a cardiac arrest. Secondly, the course of the wellbeing of the caregivers during the first year was studied. Finally, factors that are associated with a higher care burden at 12 months after the cardiac arrest were investigated. Subjects: A total of 195 family caregivers of cardiac arrest survivors were included. Main measures: Quality of life (SF-36, EuroQol-VAS), caregiver strain (CSI) and emotional functioning (HADS, IES) were measured at two weeks, three months and one year after the cardiac arrest. Thereby, the caregiver was asked to fill out the cognitive failure questionnaire (CFQ) to evaluate their view on the cognitive status of the patient. Results: Caregiver strain was high in 16 (15%) of the caregivers at 12 months. Anxiety was present in 33 (25%) caregivers and depression in 18 (14%) caregivers at 12 months. The repeated measures MANOVA showed that during the first year the following variables improved significantly: SF-36 domains social and mental health, role physical, role emotional and vitality, caregiver strain, HADS and IES (P<0.001). At 12 months caregiver strain correlated significantly (explained variance 63%, P=0.03) with caregiver HADS (P=0.01), EuroQol-VAS (P=0.02), and the CFQ (P<0.001), all measured at 12 months after the cardiac arrest. Conclusions: Overall wellbeing of the caregivers improves during the first year up to normal levels, but caregivers with emotional problems or perceived cognitive problems at 12 months are at risk for developing a higher care burden. 

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Experience and needs of family members of patients treated with extracorporeal membrane oxygenation

Aims and objectives: To explore the experiences of family members of patients treated with extracorporeal membrane oxygenation. Background: Sudden onset of an unexpected and severe illness is associated with an increased stress experience of family members. Only one study to date has explored the experience of family members of patients who are at high risk of dying and treated with extracorporeal membrane oxygenation. Design: A qualitative descriptive research design was used. Methods: A total of 10 family members of patients treated with extracorporeal membrane oxygenation were recruited through a convenient sampling approach. Data were collected using open‐ended semi‐structured interviews. A six‐step process was applied to analyse the data thematically. Four criteria were employed to evaluate methodological rigour. Results: Family members of extracorporeal membrane oxygenation patients experienced psychological distress and strain during and after admission. Five main themes (Going Downhill, Intensive Care Unit Stress and Stressors, Carousel of Roles, Today and Advice) were identified. These themes were explored from the four roles of the Carousel of Roles theme (decision‐maker, carer, manager and recorder) that participants experienced. Conclusion: Nurses and other staff involved in the care of extracorporeal membrane oxygenation patients must pay attention to individual needs of the family and activate all available support systems to help them cope with stress and strain. Relevance to clinical practice: An information and recommendation guide for families and staff caring for extracorporeal membrane oxygenation patients was developed and needs to be applied cautiously to the individual clinical setting.

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Psychometric Evaluation of Kingston Caregiver Stress Scale

Objectives: Standardized measurement of caregiver stress is a component of Medicare’s new health care benefit supporting care planning for people with dementia. In this article we identify existing measures of caregiver stress, strain and burden and propose specific criteria for choosing tools that may be suitable for wide use in primary care settings. We reviewed 22 measures and identified one, the Kingston Caregiver Stress Scale (KCSS), which met all the proposed criteria but had not been studied in a U.S. sample. We conducted a psychometric evaluation of KCSS to determine its potential usefulness as a care planning tool with a U.S. sample. Methods: We examined the internal consistency, test-retest reliability, component structure, and relationship to depression and anxiety in 227 dementia caregivers at two U.S. sites. Results: The KCSS has high internal consistency and test-retest reliability, a strong factor structure, and moderate to high correlations with caregiver depression and anxiety. Conclusion: KCSS is a good candidate for use as part of comprehensive care planning for people with dementia and their caregivers. Clinical Implications: Routine assessment of caregiver stress in clinical care may facilitate timely intervention and potentially improve both patient and caregiver outcomes.

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Female Caregivers and Stroke Severity Determines Caregiver Stress in Stroke Patients

Background: Stroke is among the major causes of short- and long-term disability. This study aimed to understand the caregivers (CGs) stress in stroke survivors. Materials and Methods: A 22-item questionnaire was administered to 201 CGs of stroke survivors. The variables tested were physical and mental health, social support, financial, and personal problems. CGs were divided into Group A (Barthel index [BI] <75) and B (BI >75) according to patient's BI, according to gender (male and female CG) and relation; spouses (wife, husband), daughters, sons, daughter-in-law, grandchildren, and rest (father, mother, brother, sister, and in-laws). Data were analyzed using SPSS software version–21. Data were analyzed to determine which variables of the patient effects the CG stress. Results: Majority of the CGs (74.62%) were females. 65% of CGs graded their burden as moderate to severe. 81% of CGs had left their work for caregiving. More than half of the CGs felt sleep disturbance and physical strain. Psychological instability and financial burdens were reported in 3/4th of CGs. Group A CGs faced more sleep, financial, health, and social life disturbance. Patient's bladder and bowel problems, shoulder pain, patients noncooperative attitude for medication administration, and physiotherapy were more upsetting for Group A CGs. Female CGs were subjected to more sleep disturbance, physical and psychological stress, faced more difficulty regarding the patient's bladder, bowel, personal hygiene needs, and physiotherapy. Female CGs felt less motivated in caregiving than male CGs. Wives and daughters-in-law experienced more burden. Time spent and burden perceived was more by female CGs (χ2 = 15.199, P = 0.002) than males (χ2 = 11.931, P = 0.018); wives and daughters than other relations (χ2 = 32.184, P = 0.000), (χ2 = 35.162, P = 0.019). Conclusion: Our study showed that caregiving burden was predominantly shouldered by females CGs. CGs faced physical, psychological, and socioeconomic burden. The burden was more evident in female CGs and in patients with severe stroke.

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Mindfulness training for psychological stress in family caregivers of persons with dementia: a systematic review and meta-analysis of randomized controlled trials

Caring for a relative with dementia is extremely challenging; conventional interventions may not be highly effective or easily available on some occasions. This study aimed to explore the efficacy of mindfulness training in improving stress-related outcomes in family caregivers of people with dementia using a meta-analytic review. We searched randomized controlled trials (RCT) through April 2017 from five electronic databases, and assessed the risk of bias using the Cochrane Collaboration tool. Seven RCTs were included in our review. Mindfulness interventions showed significant effects of improvement in depression (standardized mean difference: -0.58, [95% CI: -0.79 to -0.37]), perceived stress (-0.33, [-0.57 to -0.10]), and mental health-related quality of life (0.38 [0.14 to 0.63]) at 8 weeks post-treatment. Pooled evidence did not show a significant advantage of mindfulness training compared with control conditions in the alleviation of caregiver burden or anxiety. Future large-scale and rigorously designed trials are needed to confirm our findings. Clinicians may consider the mindfulness program as a promising alternative to conventional interventions.

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The Family in Care for the Elderly: Managing the Overload and Coping with Difficulties

Introduction: Family is considered the main support of the elderly in a situation of dependency. Caregiving often results in overloading, leading to diverse problems. Aim: To evaluate the self-perception of the family caregiver’s overload and the strategies used to provide informal care to the dependent elderly considering their level of dependence. Method: The sample consisted of 21 children, 16 spouses, and nine other relatives of elderly dependents who responded to the Caregiver’s Overload Scale (Sequeira, 2007), the Portuguese version of Caregivers’ Assessment Management Index (CAMI, Nolan, Keady, & Grant, 1995) and the Barthel Index (Mahoney & Barthel, 1965). Results: The Barthel Index showed 34.8% of the elderly as severely dependent and 37.0% as totally dependent. The care most provided respected to medication, hygiene, food, and monitoring. Above 56.5% of the caregivers had an intense overload, both at the objective (impact of care and interpersonal relationship) and subjective (F3-Expectations regarding care and F4-Perceived self-efficacy) levels. The main reason for maintaining caregivers was family/personal obligation (95.7%). Caregivers reasonably assessed the effectiveness of their strategies in dealing with their dependent elderly (CAMI M = 101.0, SD = 15.0). There was a negative relationship between the perception of the caregiver’s overload and the age and health status of the elderly, as well as between the number of strategies used by the caregiver to overcome difficulties and the self-perception of the overload. Conclusion: The multiplicity of daily tasks performed in support of a family member in a situation of severe dependence translates into situations of intense overload, negatively impacting on care, interpersonal relationship, expectations regarding caring, and perception of self-efficacy of care.

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Effects of stress appraisal on the quality of life of adult patients with multiple myeloma and their primary family caregivers in Korea

Background: Modern treatment for multiple myeloma (MM) has improved disease control and prolonged survival; thus, maintenance of quality of life (QoL) is considered a great concern for MM patients and their caregivers. The purpose of this study was to identify dyadic associations between stress appraisal and the QoL of patients with MM and their caregivers in Korea. Methods: A total of 102 MM patient‐caregiver dyads participated in this study. They independently reported their stress appraisal and QoL. The study was guided by a transactional model of stress and coping, and analyzed by using the actor‐partner interdependence model. Results: The results revealed good data adjustment with acceptable indices: χ2 = 6.211 (df = 6), CFI = 0.999, TLI = 0.994, RMSEA = 0.019, and SRMR = 0.043. MM patients' QoL were significantly correlated with caregivers' QoL. The stress appraisals of patients and caregivers mutually influenced each other's QoL. The patients' illness perception and the caregivers' burden were strong predictors for their QoL. The self‐efficacy of patients and caregivers was also associated with their QoL. Conclusions: Our findings suggest that the way patients and caregivers perceive and respond to stress plays a significant role in their QoL during the treatment experience. Interventions designed to reconstruct negative perspectives and improve self‐efficacy may help both patients and caregivers to improve their QoL.

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Understanding the association between time spent caregiving and well-being among employed adults: testing a model of work–life fit and sense of community

This study examines factors associated with work–life fit and sense of geographic community as mediators of the negative association between caregiving demands and well-being among employed informal caregivers. Data were drawn from a larger project assessing well-being among residents of three mid-size cities in Ontario, Canada. A subsample was selected of informal caregivers who worked for pay for at least eight hours/week ( n  = 276). Caregiving demands were measured by time spent caring for an adult who was a relative, friend, or neighbour. Well-being followed a holistic conceptualization advanced by the Canadian Index of Wellbeing. The more time spent caregiving, the lower participants’ well-being ratings were. This association was mediated by perceived time adequacy, income adequacy, and sense of community, such that the more time participants spent caregiving, the lower their ratings of these three resources. This explained the initial association of caregiving hours with reduced well-being. Enhanced well-being was more strongly associated with sense of community than any other factor, which supports the importance of the community domain in understanding well-being among employed caregivers and suggests its further testing with other population groups. Policy implications for employers and community organizations are provided.

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Transitions From Hospitals to Skilled Nursing Facilities for Persons With Dementia: A Challenging Convergence of Patient and System-Level Needs

Purpose of the Study: To describe skilled nursing facility (SNF) nurses’ perspectives on the experiences and needs of persons with dementia (PwD) during hospital-to-SNF transitions and to identify factors related to the quality of these transitions. Design and Methods: Grounded dimensional analysis study using individual and focus group interviews with nurses (N = 40) from 11 SNFs. Results: Hospital-to-SNF transitions were largely described as distressing for PwD and their caregivers and dominated by dementia-related behavioral symptoms that were perceived as being purposely under-communicated by hospital personnel in discharge communications. SNF nurses described PwD as having unique transitional care needs, which primarily involved needing additional discharge preplanning to enable preparation of a tailored behavioral/social care plan and physical environment prior to transfer. SNF nurses identified inaccurate/limited hospital discharge communication regarding behavioral symptoms, short discharge timeframes, and limited nursing control over SNF admission decisions as factors that contributed to poorer-quality transitions producing increased risk for resident harm, rehospitalization, and negative resident/caregiver experiences. Engaged caregivers throughout the transition and the presence of high-quality discharge communication were identified as factors that improved the quality of transitions for PwD. Implications: Findings from this study provide important insight into factors that may influence transitional care quality during this highly vulnerable transition. Additional research is needed to explore the association between these factors and transitional care outcomes such as rehospitalization and caregiver stress. Future work should also explore strategies to improve inter-setting communication and care coordination for PwD exhibiting challenging behavioral symptoms.

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Carers as System Navigators: Exploring Sources, Processes and Outcomes of Structural Burden

Background and Objectives: Structural features of formal care systems influence the amount, difficulty, and complexity of what carers do as they interface with those systems. In this study, we explored how carers navigate health and social care systems, and their experiences of structural burden related to features such as complexity and fragmentation. Research Design and Methods: This qualitative descriptive inquiry drew on data from in-person interviews with 32 carers of older adults, which were analyzed first using inductive thematic analysis and then using structural burden as a conceptual lens. Results:  Participant accounts revealed how navigating formal systems on behalf of older adult family members can exact considerable demands on carers in terms of time investment and emotional energy. In this way, care systems exacerbate the stress and structural burden experienced by carers, even when formal services alleviate other forms of carer burden. Discussion and Implications: Our findings contribute to knowledge of how the structural context of formal services shapes carer experiences and outcomes. To promote equity and prevent burden, system navigation work should be considered as a public, structural issue, rather than an individual-level problem of skills and learning.

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Knowledge, help-seeking and efficacy to find respite services: an exploratory study in help-seeking carers of people with dementia in the context of aged care reforms

Research highlights the need for carers of people with dementia to acquire relevant and timely information to assist them to access appropriate respite services. Unfortunately, negative experiences of information-seeking can create additional stress for carers and contribute to delays in up-take, or not using respite services at all. Methods: Cross-sectional survey data was collected from a convenience sample of n = 84 carers of older people with dementia living in the Illawarra-Shoalhaven region of NSW, Australia. We assessed knowledge, attitudes, information seeking behaviours, and unmet need for respite services in 2016, following national aged care reforms. Results:  Over the previous 12 months, 86% of carers sought respite service information. The majority (73%) of all carers reported an unmet need for respite services, and were relying on personal networks to provide support for respite information. Few utilised the new government gateway ‘My Aged Care’ phone line (11%) or website (25%). However, 35% used a pre-existing helpline to access short term or emergency respite. We found a preference for interpersonal information sources, including local doctor (65%), professionally and volunteer led carer support groups (49%), and family and friends (46%). Those using four or more information sources showed higher capacity to name local respite services. Respite service information seekers were more likely to be caring for someone with behavioural problems, to have received assistance to access services, and to have used respite services in the past 3 to 6 months. Conclusions: New reforms in the Australian aged care sector have not adequately responded to the needs of carers of people with dementia for respite service information and support. Wider, community-based messaging promoting positive service options and the provision of active personal support is required to address the unmet need for respite in carers of people with dementia.

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Psychological health of caregivers and association with functional status of stroke patients

Objective: Stroke does not only affect the physical state of patients but also the emotional state of their relatives, most effectively their caregivers. The study aims to examine the mood of caregivers experienced with care for patients with stroke who are highly dependent on the assistance and also to establish the relationship between the emotional state of caregivers and the severity of disability of the patients.

Methods: This study contained a total of 76 patients with sufficient cognitive functions and severe physical disabilities with hemiplegia caused by a cerebrovascular accident and their caregivers and 94 controls. The functional state of patients was assessed by the Barthel Index (BI). Furthermore, emotional state of the caregivers was assessed by the Hospital Anxiety and Depression Scale (HADS) and their life quality was assessed by the SF36 Health Survey.

Results: The mean anxiety (9.73 ± 4.88) and depression rates (9.81 ± 5.05) in the caregivers were significantly higher than those in controls (p<0.001, respectively). Significant impairments were observed in both their mental and physical health. Regression analysis also showed a significant negative correlation between the BI scores and the HADS scores.

Conclusion: Caregivers had an impaired emotional state and the level of their anxiety was associated with the severity of functional disability of the patients. Therefore, the support provided to the caregiver might be influential on the functional recovery of the patients.

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Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review

Many of the 23 million individuals with heart failure (HF) worldwide receive daily, unpaid support from a family member or friend. Although HF and palliative care practice guidelines stipulate that support be provided to family caregivers, the evidence base to guide care for this population has not been comprehensively assessed. In order to appraise the state-of-the-science of HF family caregiving and recommend areas for future research, the aims of this review were to summarize (1) how caregivers influence patients, (2) the consequences of HF for caregivers, and (3) interventions directed at HF caregivers. We reviewed all literature to December 2015 in PubMed and CINAHL using the search terms “heart failure” AND “caregiver.” Inclusion criteria dictated that studies report original research of HF family caregiving. Articles focused on children or instrument development or aggregated HF with other illnesses were excluded. We identified 120 studies, representing 5700 caregivers. Research on this population indicates that (1) caregiving situations vary widely with equally wide-ranging tasks for patients to help facilitate their health behaviors, psychological health and relationships, and quality of life (QoL); (2) caregivers have numerous unmet needs that fluctuate with patients’ unpredictable medical status, are felt to be ignored by the formal healthcare system, and can lead to distress, burden, and reduced QoL; and (3) relatively few interventions have been developed and tested that effectively support HF family caregivers. We provide recommendations to progress the science forward in each of these areas that moves beyond descriptive work to intervention development and clinical trials testing.

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Resiliency is independently associated with greater quality of life among informal caregivers to neuroscience intensive care unit patients

Objective: Every year, millions of Americans become informal caregivers to loved ones admitted to Neuroscience Intensive Care Units (Neuro-ICU), and face challenges to Quality of Life (QoL). This study sought to identify associations between resiliency, distress, and caregiver QoL at time of Neuro-ICU admission.; Methods: Informal caregivers (N = 79, Mage = 53, 64% female) of Neuro-ICU patients were recruited and completed self-report questionnaires during the hospitalization. We used hierarchical regression to test relative contributions of caregiver mindfulness, perceived coping abilities, and preparedness for caregiving to caregiver QoL, above-and-beyond non-modifiable patient and caregiver factors (e.g., gender) and caregiver psychological distress (i.e., anxiety, depression, history of mental health conditions).; Results: Preparedness for caregiving was uniquely and positively associated with Physical Health QoL (sr2 = 0.07, p = 0.001), Social QoL (sr2 = 0.05, p = 0.021), and Environmental QoL (sr2 = 0.14, p < 0.001), even after accounting for psychological distress. Mindfulness was uniquely and positively associated with Physical Health QoL (sr2 = 0.12, p < 0.001) and Psychological QoL (sr2 = 0.07, p = 0.004), above-and-beyond variance accounted for by psychological distress.; Conclusions: Mindfulness and preparedness for caregiving emerged as consistent, unique resiliency factors associated with greater caregiver QoL across QoL dimensions. Results highlight the importance of resiliency factors in QoL among Neuro-ICU caregivers and the need for early interventions to support resiliency.

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Me and You in Caregivinghood - Dyadic resistance resources and deficits out of the informal caregiver's perspective

Objective: To present Specific and Generalized Resistance Resources (SRRs/GRRs) and Deficits (SRDs/GRDs) described by 32 informal caregivers as originating from themselves and their older adult carerecipients as dyads.; Method: Salutogenic interviewing was used to assemble data from caregivers. A theory-driven, memo-guided and comparative analysis using within- and across- case analysis was applied to unravel resources and deficits influencing the outcomes when they managed tension associated with caregiving.; Findings: Living in fellowship in a well-functioning dyad unites the essence of having access to dyadic SRRs/GRRs. Such access enables dyads to use their specific dyadic tension management to resolve challenges through cooperation, derives 'positive' life-experiences and preserves dyad functioning. Struggling alone in a malfunctioning dyad indicates the presence of dyadic SRDs/GRDs counteracting such a development. If these SRDs/GRDs accumulate, the dyad become less able to resolve challenges, 'negative' life-experiences accumulates, the carerecipient's capability to cooperate decreases, caregiver's workload increases, the dyad becomes increasingly malfunctioning and moves towards the point where caregiving ends due to lack of usable SRRs/GRRs.; Conclusions: Findings reveals the complex duality of caregiving and the necessity to assess all available SRRs/GRRs and SRDs/GRDs for caregiving dyads, including out of the carerecipient's perspective. Appropriate 'salutogenic' support reduces SRDs/GRDs, makes available SRRs/GRRs usable or provides alternative SRRs/GRRs, thereby dyadic tension management and dyadic functionality is preserved during this phase of life labelled Caregivinghood. The study adds new knowledge to the salutogenic framework regarding central, theoretical concepts and suggests how data for health promoting initiatives conducted the 'salutogenic way' may be acquired.

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The Burden and Benefits of Caregiving: A Latent Class Analysis

Background and Objectives: Informal caregiving to older adults is a key part of the U.S. long-term care system. Caregivers' experiences consist of burden and benefits, but traditional analytic approaches typically consider dimensions independently, or cannot account for burden and benefit levels and combinations that co-occur. This study explores how benefits and burden simultaneously shape experiences of caregiving to older adults, and factors associated with experience types.; Research Design and Methods: 2015 National Health and Aging Trends Study (NHATS) and National Study of Caregiving (NSOC) data were linked to obtain reports from caregivers and recipients. Latent class and regression analysis were conducted on a nationally representative sample of U.S. informal caregivers to older persons.; Results: Five distinguishable caregiving experiences types and their population prevalence were identified. Subjective burden and benefits level and combination uniquely characterize each group. Primary stressors (recipient depression, medical diagnoses), primary appraisal (activities of daily living, instrumental activities of daily living, medical task assistance, hours caregiving), and background/contextual factors (caregiver age, race, relationship to recipient, mental health, coresidence, long-term caregiving) are associated with experience types.; Discussion and Implications: Findings highlight caregivers' experience multiplicity and ambivalence, and identify groups that may benefit most from support services. In cases where it is not possible to reduce burden, assistance programs may focus on increasing the benefits perceptions.

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Inpatient dependency in activities of daily living predicts informal caregiver strain: A cross-sectional study

Aims and Objectives: To investigate what factors influence caregiver strain in informal caregivers just before inpatients are discharged.; Background: Previous research has investigated the risk factors related to the burden on caregivers in different clinical contexts. However, the findings from studies analysing these factors just before inpatients are discharged are uncertain.; Design: A cross-sectional study design.; Methods: The study involved 100 inpatients and 100 informal caregivers from seven different hospital units. Sociodemographic, clinical, functional and cognitive factors of inpatients-caregivers, and caregiver strains were recorded. Descriptive, bivariate correlation and multiple regression analyses were performed.; Results: Caregivers of inpatients at risk of ulcers had significantly higher scores of strain. Dependency in activities of daily living scores and cognitive status scores were statistically inversely proportional to caregiver strain. Almost 27% of total variance of caregiver strain was due to dependency in activities of daily living.; Conclusions: Caregiver strain was mainly associated with those situations in which the hospitalised patients presented the risk of ulcers, dependency and cognitive disorders, with dependency in activities of daily living being the factor that most influenced informal caregiver strain.; Relevance To Clinical Practice: Dependency in activities of daily living, among other risk factors, should be evaluated at an early stage, monitored and controlled by hospital nursing staff. These strategies could protect and promote the well-being and quality of life of informal caregivers during patient hospitalisation and after discharge.

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The last taboo: The experience of violence in first-episode psychosis caregiving relationships

Objectives: Informal caregiving relationships play an important role in facilitating recovery outcomes in psychosis. The relationship can serve as a source of positive experiences that co-exist alongside common challenges typically associated with mental health problems. People with psychosis, when compared to the general population, are more likely to perpetrate acts of violence, a relationship that is particularly evident during the first psychosis episode. Although victims of service user violence are typically people already known to them, such as informal carers, there remains a lack of understanding about their caring experiences and needs. This study sought to address gaps in the literature by exploring the subjective accounts of informal carers supporting a relative experiencing their first episode of psychosis who has also behaved violently towards them.; Design: A cross-sectional design was employed.; Methods: Individual semi-structured interviews, which were audio recorded and later transcribed for analyses, were undertaken with a convenience sample of eight carers drawn from a specialist early psychosis service. Interview questions focused on their experiences of patient violence, the subjective impact, and coping strategies. An interpretative phenomenological approach was used to analyse the data.; Results: Participants were mostly living with their relative with psychosis and were typically female, parents, and from a black and minority ethnic background. Data analyses identified seven key themes from participant interviews including the lack of predictability over when the violence occurred, being scared and fearful, keeping quiet about what happens at home and in the caregiving relationship, and staying safe.; Conclusions: Reports by informal carers about experiencing violence and victimization from their relatives with psychosis are an important issue in some caregiving relationships during the first episode. Developing a more informed understanding of the specific needs of these carers and the caregiving relationship is indicated. The implications for service providers are discussed.; Practitioner Points: Carers were exposed to a broad range of patient violence, which included being kicked and having weapons used against them. The violence typically occurred within carers' homes, when no other people were around. Patient violence impacted negatively on carer emotional and physical functioning, which included leaving carers living in fear of their own safety and what might become of their relative. The results highlight the importance of routinely asking first-episode carers about their experience of patient violence. The development of interventions (e.g., identification of early triggers, de-escalation) that are able to take account of the ongoing nature and complexity of the caregiving relationship but are purposefully aimed at supporting carers to remain safe in their relationship should be explored for their impact.

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Impact of informal caregiving on cognitive function and well-being in Canada

Background: With a rise in the aging population and a consequential rise in persons diagnosed with dementia comes an increase in the number of informal caregivers who are caring for a loved one. The objective of the proposed study was to assess the neurocognitive and psychological effects of caring for a person with dementia or a related neurodegenerative disease in a sample of Canadian informal caregivers.; Methods: Fifty-seven informal caregivers of a person with dementia or a related neurodegenerative disease (mean age = 66.26, SD = 7.55) and 97 non-caregivers (mean age = 69.16, SD = 4.84) were recruited. Neuropsychological measures of attention, cognitive flexibility, verbal learning, delayed recall, and verbal fluency were examined, and questionnaires related to perceived stress, quality of life, mood, and self-esteem were administered.; Results: Caregivers made more errors on a measure of cognitive flexibility (p = 0.02), generated fewer words on measures of phonemic fluency (p < 0.01) and semantic fluency (p < 0.001), and learned significantly fewer words on a list-learning task (p < 0.01). Caregivers also reported experiencing significantly more perceived stress (p < 0.001), lower quality of life (p < 0.001), and were more likely to meet the cut-off for clinically significant depressive symptoms on a self-report scale (p < 0.001).; Conclusion: These data contribute to a growing body of literature that consistently points to the need for immediate action to improve the welfare of caregivers.

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Does the Health of Adult Child Caregivers Vary by Employment Status in the United States?

Objective: This study investigates whether the health effects of informal caregiving for aging parents vary by employment status in the United States. Two opposing hypotheses are tested: dual role strain and role enhancement.; Method: Using national longitudinal data from the U.S. Health and Retirement Study, multivariate regression models predicted self-rated health and mental health among older adult children caregiving for their parents (2009-2012) and noncaregivers.; Results: A statistically significant interaction was found between caregiving duration and employment, indicating that employed caregivers had significantly worse health than retired caregivers. Caregiving duration also predicted significantly higher levels of depressive symptoms.; Discussion: Our results support the dual role strain hypothesis and suggest that caregiving for a parent up to 4 years is enough to predict significantly worse health among older adult Baby Boomers, especially those in the labor force. The broader implications for public health and workplace policies are discussed.

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Prevalence and predictors of psychosocial problems in informal caregivers of older cancer survivors - A systematic review: Still major gaps in current research

Despite the abundance of studies concerning caring for patients with cancer, less is known about caring for an older cancer survivor (≥65 years). We aimed to systematically gather literature about the psychosocial well-being of caregivers of older cancer survivors and to identify possible risk factors for developing psychosocial problems. Fourteen articles met the following inclusion criteria: articles about (a) cancer, (b) informal caregivers, (c) older survivors and a (d) curative setting. After critical appraisal, nearly all were considered to be of moderate-to-strong quality. This results mainly from the specific study population, the valid and reliable measurement instruments and the appropriate statistical methods used in the articles. Main outcomes were burden, depression, anxiety, self-esteem, distress, communication issues, stress and QoL. For all these outcomes, measurement instruments and timing of measurements vary. Also, the results on studied predictors vary widely or not all of them were described in the reviewed articles. There seems to be a higher prevalence of distress, lower QoL and more anxiety in informal caregivers of older cancer survivors compared with the general population, but all were understudied. Based on these results and more focused future research, specific and qualitative support for this group of caregivers can be developed.

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Helping Carers Care: An Exploratory Study of Factors Impacting Informal Family Carers and Their Use of Aged Care Services

This exploratory study considered the role of informal carers and their decision-making regarding various aged care services that supposedly support their ageing relatives. Consideration was given to the stressors and overall well-being of informal carers and the support services they did or did not receive during their time of caregiving. A questionnaire was utilised to gain exploratory quantitative and qualitative data plus basic demographic information from informal carers who connected with a single caregiver association based in Victoria, Australia. Several themes emerged from the analysis of data regarding carer well-being, carer decision-making and carer relationships-particularly with respect to the various authorities and organisations ostensibly responsible for supporting carers. While the majority of participants indicated a religious association, nevertheless spiritual considerations were not stress factors paramount in their decision-making or their criticism of carer support services. Other concerns dominated such as the need of having appropriate practical support, better case management, organisational transparency and greater recognition of the role of informal carers. Although this research was isolated to a particular locality, carers in similar situations globally have indicated comparable stresses and challenges further indicating that greater accountability and improved organisation are required for the support of carers internationally. Recommendations are suggested for how service providers can support carers-most importantly, the need for ongoing government assessment and government service improvement in order to help carers care into the future.

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The role and profile of the informal carer in meeting the needs of people with advancing Parkinson's disease

Background: Many people with Parkinson's disease (PD) (PwP) require care from either informal or formal carers, due to worsening symptoms. Carer strain is a recognised consequence of caring. However there are few data on the role and profile of informal carers and if this impacts on carer strain.; Method: People with moderate to advanced PD, with an informal carer were invited to participate. Data regarding motor and non-motor symptoms of the participant, along with demographics, tasks and duration of caring and health issues of the carer were collected.; Results: One-hundred and fifteen participants and their carer were recruited. Mean carer age was 70.7 years, 66.1% were female caring for a median of 16 hours per day. Over 80% provided help in housework and companionship activities, 63.2% with dressing and 49.1% with feeding. There was a significant relationship between disease stage and level of strain. Participant age, physical and cognitive disability were significantly associated with greater care need. High care need was associated with poor carer quality of life.; Conclusions: The care needs of PwP are considerable. To reduce carer strain and improve quality of life, carers' needs must be considered to enable them to carry on with their vital role.

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Effectiveness of two home ergonomic programs in reducing pain and enhancing quality of life in informal caregivers of post-stroke patients: A pilot randomized controlled clinical trial

Background: Informal caregivers of post-stroke patients usually undergo high levels of pain and stress and have a reduced quality of life.; Objective: To evaluate the effectiveness of two home ergonomic interventions aimed at reducing pain intensity and perceived stress and enhancing the quality of life in informal caregivers of chronic post-stroke patients.; Methods: A randomized single-blind controlled clinical trial was conducted, with a sample of 33 informal caregivers of patients with stroke. Three groups were included: one received postural hygiene training and kinesiotherapy, for 12 weeks, two days a week, one hour per session; another received adaptation of the home environment, and the third was a control group. Pain intensity, stress level and general quality of life were evaluated at three-time points: pre-intervention, post-intervention, and after a follow-up period of three months.; Results: Neck pain decreased in the two experimental groups, and increased in the control group. Pain in the shoulders and knees was alleviated in the group that received postural hygiene and kinesiotherapy. In addition, regarding quality of life, this group obtained an improvement in the physical health dimension, while the home adaptation group reported improved social relationships.; Conclusions: These results suggest that 12 weeks of training in postural hygiene, combined with kinesiotherapy, and home adaptations can reduce pain and improve several aspects of the quality of life of this population. CLINICALTRIALS.; Gov Id: NCT03284580.; Copyright © 2018 Elsevier Inc. All rights reserved.

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Sex disparities in access to caregiving in Parkinson disease

Objective: To compare access to caregiving between men and women with Parkinson disease (PD).; Methods: This was a cross-sectional and longitudinal study among participants with PD enrolled in the National Parkinson Foundation Parkinson's Outcomes Project from 2009 to 2014 at 21 international sites. The primary outcome measures were presence of a caregiver at the baseline visit, caregiver burden as measured by the Multidimensional Caregiver Strain Index (MCSI) at baseline, and time to first paid caregiver.; Results: A total of 7,209 participants (63% men, 37% women) with PD were evaluated. Men had a mean age of 66.0 (SD 9.8) years, and women had a mean age of 66.9 (SD 9.7) years. More men than women had a caregiver (88.4% vs 79.4%, p < 0.0001). Caregivers of men reported greater strain than those of women (MCSI score 19.9 vs 16.4, p < 0.0001). These differences persisted after controlling for age, disease stage, number of comorbidities, cognitive and mobility measures, and health-related quality of life. In addition, the odds of caregiver accompaniment at baseline visit were lower for women compared to men (odds ratio 0.76, 95% confidence interval [CI] 0.67-0.86), and women had a faster rate to using a paid caregiver than men (hazard ratio 1.76, 95% CI 1.35-2.28) after controlling for potential confounders.; Conclusions: Informal caregiving resources are lower for women than men with PD, despite the finding that their caregivers report less strain than those of men. In addition, women are more likely to use formal, paid caregivers. Strategies to improve access to caregiving, particularly for women, are needed.

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An intervention that reduces stress in people who combine work with informal care: randomized controlled trial results

Background: The aim of the research was to examine whether a role-focused self-help course intervention would decrease caregiver stress and distress, and functioning problems, among people who suffer stress because they combine paid work with informal care.; Methods: A pre-registered (NTR 5528) randomized controlled design was applied (intervention vs. wait list control). Participants (n = 128) were people who had paid work and were suffering stress due to their involvement in informal care activities. Participants allocated to the intervention group (n = 65) received the role-focused self-help course. Control group members (n = 63) received this intervention after all measurements. Prior to the random allocation (pre-test), and 1 month (post-test 1) and 2 months (post-test 2) after allocation, all participants completed a questionnaire that measured their caregiver stress (primary outcome), distress, work functioning, negative care-to-work interference and negative care-to-social and personal life interference. Mixed model ANOVAs were used to test the effectiveness of the intervention.; Results: Two months after allocation, the intervention group participants had lower levels of caregiver stress and distress compared with the control group participants. The intervention did not directly resolve impaired work functioning or interference of care with work and social/personal life.; Conclusion: The intervention decreases caregiver stress and distress in people who suffer stress because they combine paid work with informal caring. The intervention (Dutch version) can be downloaded at no cost from www.amc.nl/mantelzorgstress.

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Evaluation of chronic stress indicators in geriatric and oncologic caregivers: a cross-sectional study

Caregiving induces chronic stress with physical and psychological impact on informal caregivers health. Therefore, subjective and objective indicators are needed for the early diagnosis of pathologic stress to prevent the risk of developing stress-related diseases in caregivers. Our aim was to assess the self-perceived stress, that is, how and how much the stressor affects the individual, through endocrine, metabolic, and immunologic biomarkers levels in geriatric and oncologic informal caregivers. Informal caregivers and non-caregivers were invited to participate in a cross-sectional study at the Clinic Hospital of Barcelona. Demographic and lifestyle characteristics, self-perceived stress (Perceived Stress Scale, State-Trait Anxiety Inventory and Stress Visual Analogue Scale), and biomarkers (copeptin, glucose, glycated hemoglobin, low-density lipoprotein cholesterol (LDL), high-density lipoprotein cholesterol (HDL), cholesterol, triglycerides, α-amylase, cortisol, tumor necrosis factor (TNF-α), and Interleukins (IL-6 and IL-10)) were evaluated. Descriptive and non-parametric statistical data analysis were performed. Fifty-six subjects (19 non-caregivers, 17 geriatric caregivers, and 20 oncologic caregivers) participated. Median age (IQR) was 57 years (47-66) and 71.46% were women. Self-perceived stress was higher in oncologic caregivers than geriatric caregivers in all psychometric test analyzed (Wilcoxon Rank Sum test, p value < .05). Glucose concentrations and glycated hemoglobin levels differed statistically among groups (Kruskal-Wallis test (K-W tests), p value < .05), even though the median levels were not clinically relevant. Levels of other biomarkers did not differ significantly (K-W tests, p value > .05). These findings suggest that perceived stress is not homogeneous in the caregivers community and thus these two groups could be differentiated. These results provide the baseline information to initiate social actions addressed to each group of caregivers to increase their wellbeing.

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Brain Structural Markers and Caregiving Characteristics as Interacting Correlates of Caregiving Strain

Objective: To evaluate the association between brain structural markers and caregiving strain among older informal caregivers.; Design: A secondary data analysis combining data from the Caregiver Health Effects Study (1993-1994) and the Cardiovascular Health Study MRI examination (1992-1994).; Setting: Four United States communities.; Participants: Co-residing spousal caregivers (N = 237; mean age: 76.2 years, SD: 2.2 years).; Measurements: Visually rated ventricular and white matter (WM) grades from magnetic resonance imaging, caregiving strain defined as "emotional or physical strain associated with providing care" for any of 12 activities of daily living (ADLs) and instrumental activities of daily living (IADLs), plus measures of caregiving characteristics and caregiver's health.; Results: Overall, 56% of caregivers reported strain. We detected an interaction where strain was very common (>82%) among caregivers who helped with four or more IADLs, regardless of WM grades, and among caregivers with the worst WM grades (WM grades ≥4), regardless of the number of IADLs they helped with. Among caregivers helping with fewer than four IADLs, having WM grade 4 or greater was associated with a 55% higher prevalence ratio for reporting strain. This association remained statistically significant but was most markedly attenuated by adjustments for: care recipient's memory and behavioral problems, caregiver's depression symptoms, and caregiver's ADL impairment.; Conclusions: Caregiving strain is very common among older informal caregivers who provide help with many IADLs, and among caregivers who help with fewer IADLs, but have manifest signs of white matter pathology. Modern quantitative-neuroimaging studies are needed to evaluate whether more subtle variability in brain structure confers caregiving strain and the related health consequences.

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Coping strategies and psychological distress in caregivers of patients with Amyotrophic Lateral Sclerosis (ALS)

Background: Amyotrophic lateral sclerosis (ALS) causes distress in caregivers. The present study aims to examine the association between coping strategies and psychological distress in caregivers of ALS patients.; Methods: Coping strategies were assessed in 96 ALS informal caregivers by means of the Coping Inventory for Stressful Situations. Data about caregivers' demographic characteristics, levels of burden, depression and anxiety (psychological distress) were also gathered by standardised questionnaires. Patients' clinical, cognitive and behavioural disturbances were evaluated by ALS specific assessment tools.; Results: Sequential logistic regression analysis showed that emotion-oriented coping strategy was significantly associated with high levels of depressive (p < 0.01) and anxiety (p < 0.05) symptoms and high levels of burden (p < 0.05), after controlling for all other variables. Moreover, a significant relationship of patients' functional dependence levels with burden experienced by caregivers was observed. No relationships were detected between task-oriented and avoidance-oriented coping strategies and caregivers' levels of psychological distress.; Conclusions: The present study supported the mediating effects of coping strategies on intensity of burden, depression and anxiety experienced by ALS caregivers. These findings suggest that interventions aimed at reducing utilisation of maladaptive coping strategies may improve well-being in ALS caregivers, and, possibly, management of symptoms in ALS patients.

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Reduced cardiovascular activation following chronic stress in caregivers of people with anorexia nervosa

Caring for offspring diagnosed with eating disorders (EDs) puts caregivers under high levels of chronic stress, which have negative consequences for their health. Unfortunately, caregivers have received little attention from mental health professionals. Chronic stress experienced by informal caregivers has been associated with the alteration of body homeostasis, and therefore, the functioning of various physiological systems. This could be the basis of health problems in informal caregivers of people with EDs. The main objective of this study was to analyze physiological response, in terms of heart rate (HR) and heart rate variability (HRV), to an acute laboratory stressor in a sample of informal caregivers of individuals with anorexia nervosa (n = 24) compared to a sample of noncaregivers (n = 26). In addition, the relationship between depressive mood and the aforementioned cardiovascular response parameters was analyzed in the group of caregivers. Caregivers had higher high-frequency (HF) power HRV, and lower HR, low-frequency (LF) power HRV and LF/HF ratio values than noncaregivers, which suggests lower cardiovascular reactivity to the acute stressor than noncaregivers. Moreover, a blunted HR response to stress was associated with high depressive mood scores in caregivers. Hence, it seems that the worse the mood the lower the cardiovascular reactivity to stressful events in this population. Developing and implementing psychotherapeutic interventions focused on stress management would help caregivers to reduce their stress levels and cope more effectively with stressors.

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Stress-Induced Endocrine and Immune Dysfunctions in Caregivers of People with Eating Disorders

Caregivers have to cope repeatedly with acute stressors in their daily lives, and this is associated with disturbances in the hypothalamic-pituitary-adrenal (HPA) axis and the immune system. Such disturbances could contribute to the development of health problems in informal caregivers of people with chronic illnesses, such as eating disorders (EDs). The main objective of this study was to examine endocrine (salivary cortisol levels (Csal)), immune (immunoglobulin-A (IgA)), and psychological (anxiety, mood, and anger feelings) responses to an acute psychological stressor in a sample of informal caregivers of individuals with EDs compared to a sample of non-caregivers. In addition, it also aimed to analyze the potential relationship of the aforementioned endocrine and immune response parameters with psychological variables in the caregivers. Caregivers had lower Csal and IgA levels at all assessment points except baseline. Moreover, they also exhibited lower Csal and IgA responses and greater worsening of mood in response to acute psychosocial stress than the non-caregivers, which suggests that caregivers had dampened endocrine and immune reactivity to acute stress. On the other hand, endocrine and immune parameters were unrelated to psychological variables. These findings advance our understanding of how a chronically stressed population reacts to acute stress, and should be considered for the development of effective interventions focused on stress management that could help caregivers to reduce their stress levels, which, in turn, would improve their health.

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The lived experience of caregivers of persons with heart failure: A phenomenological study

Background: Heart failure (HF) patients need to follow a strict pharmacological and nonpharmacological regimen in order to counteract the burden of the disease, and informal caregivers are an important resource for HF patients in managing and coping with their disease. Few studies have examined the lived experience of these caregivers with a rigorous phenomenological approach, and none have been conducted in Italy.; Aim: To describe the lived experience of the caregivers of HF patients.; Methods: A hermeneutic phenomenological method was used. Caregivers were enrolled in a HF clinic in central Italy. Interviews were analysed using a phenomenological approach. Credibility, dependability, confirmability and transferability were adopted in order to strengthen trustworthiness.; Findings: Thirty HF caregivers (mean age: 53 years) were enrolled. Of these, 63% of the caregivers were female and 80% were patients' spouses or children. Six themes emerged: (1) fear and worry related to the illness; (2) life changes and restrictions; (3) burden due to caregiving; (4) uncertainty about illness management; (5) helping patients to cope with the illness; and (6) love and affection towards the patient.; Conclusion: The findings of our study may help providers to guide interventions for HF caregivers. Providers should be supportive of caregivers and provide them with education in order to reduce their fears and worries about the illness and to handle the course of HF and its symptoms. An empathetic and practical approach with caregivers that considers the patient-caregiver relationship may help caregivers to cope with the changes and restrictions that caregiving brings to their lives and to reduce their burden.

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Burnout in early course psychosis caregivers: the role of illness beliefs and coping styles

Aims In occupational settings, burnout is a common response to chronic exposure stressors and has been frequently documented in formal caregivers (i.e. paid psychiatric staff). However, the literature is limited on reports of burnout among informal caregivers and particularly within early psychosis groups. The current study sought to investigate reports of burnout in carers of young adults treated within a specialist early psychosis service and links with key appraisals reported about the illness and coping. Methods Seventy-two carers completed the Maslach Burnout Inventory along with self-report measures of coping styles and illness beliefs. Results Seventy-eight per cent of carers reported high burnout in at least one of the three key burnout markers (i.e. emotional exhaustion, depersonalization or low personal accomplishment). Seven per cent of carers met full criteria for high burnout across all the three domains. A carer's belief about the negative consequences of the illness for themselves was a significant predictor of emotional exhaustion and depersonalization. Low personal accomplishment was linked to a carer's less optimistic beliefs about the illness timeline and fewer reports of adaptive coping. Conclusions The results provide preliminary support for the importance of asking carers in the early illness phase about their experiences of caregiving. Targeted assessment may serve as a helpful tool to identify and intervene with carers in need of additional support with stress management, use of adaptive coping strategies, and balanced recovery focused information about psychosis.

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Impact of informal caregiving on older adults' physical and mental health in low-income and middle-income countries: a cross-sectional, secondary analysis based on the WHO's Study on global AGEing and adult health (SAGE)

Objectives: A high proportion of care stemming from chronic disease or disability in low-income and middle-income countries is provided by informal caregivers. The goal of this study was to determine the level of burden experienced by these caregivers, explore associated factors and assess whether caregivers' and non-caregivers' health differed.; Design and Setting: This cross-sectional study was a secondary analysis of data on caregivers' burden, health and health risk factors in Ghana, India and the Russian Federation collected as part of the WHO's Study on global AGEing and adult health (SAGE) Wave 1.; Participants: Caregivers in Ghana (n=143), India (n=490) and Russia (n=270) completed the measures.; Outcome Measures: Factors associated (ie, demographics and caregiving profile variables) with burden were explored among caregivers. Then, quality of life (QOL), perceived stress, depression, self-rated health (SRH) and health risk factors were compared between caregivers and matched non-caregivers (1:2).; Results: The largest caregiving subgroups were spouses and adult children. Caregivers mostly cared for one person and provided financial, social/emotional and/or physical support, but received little support themselves. Burden level ranged from 17.37 to 20.03. Variables associated with burden were mostly country-specific; however, some commonality for wealth, type of care and caregiving duration was noted. Caregivers with a moderate or high level of burden reported lower QOL and higher perceived stress than those experiencing low burden. Caregivers reported lower QOL and SRH than non-caregivers.; Conclusion: Given the lack of support received and consequences of the burden endured by caregivers, policy and programme initiatives are needed to ensure that caregivers in low- and middle-income countries can fulfil their role without compromising their own health.

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Balancing satisfaction and stress: carer burden among White and British Asian Indian carers of stroke survivors

Objectives: This paper presents the findings of a qualitative study exploring White and British Indian informal stroke carers' experiences of caring, factors contributing to their stress, and strategies used to overcome stress.; Design: A qualitative approach involving in-depth interviews was used to explore informal carers' experiences of caring for stroke survivors and the stress of caring at one and three to six months from the onset of stroke. Interviewers bilingual in English and Gujarati or Punjabi conducted interviews with carers. Socio-demographic data of carers and stroke survivors were collected at one, and three to six months by dedicated stroke research nurses.; Results: A total of 37 interviews with carers caring for stroke survivors with a wide range of physical and mental impairments were completed. A majority of carers had assumed the task of caring within a few weeks of the stroke. Irrespective of ethnicity, carers' emotional and physical well-being was undermined by the uncertainty and unpredictability of caring for stroke survivors, and meeting their expectations and needs. The strain of managing social obligations to care was common to all carers irrespective of gender and ethnicity, but the higher levels of anxiety and depression reported by Indian British female carers appeared to stem from the carers' pre-existing physical ailments, their cultural and religious beliefs, and household arrangements. Carers' strain in extended households was exacerbated by the additional responsibility of caring for other dependent relatives.; Conclusion: Since the role of carers is clearly indispensable in the successful rehabilitation of survivors, it is vital to ensure that their well-being is not undermined by a lack of information and training, and that their need for professional support is prioritised.

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Informal caregiving, work-privacy conflict and burnout among health professionals in Switzerland - a cross-sectional study

Introduction: Health professionals were found to have an elevated burnout risk compared to the general population. Some studies also reported more emotional exhaustion - a component of burnout - for health professionals with informal caregiving responsibilities for children (double-duty child caregivers) or adults (double-duty adult caregivers) or a combination of both (triple-duty caregivers) compared to health professionals without informal caregiving roles (formal caregivers). However, the potential mediating effect of the work-privacy conflict in this relationship as well as differences between occupational groups have not yet been studied in healthcare settings.; Aim: To assess the impact of informal caregiving on burnout risk among health professionals and whether this relationship is mediated by work-privacy conflict or differs between occupational groups.; Methods: Data were collected through an employee survey in six hospitals from German-speaking Switzerland in 2015/2016. Mediation analyses were performed using linear mixed models with fixed effects for caregiving situation and work-privacy conflict as well as random effects for hospitals.; Results: Triple-duty caregivers were found to have a significantly higher burnout risk compared to formal caregivers only. Work-privacy conflict did not mediate this relationship, except among the "other health professionals" group.; Conclusion: Additional and large-scale studies focusing on the combination of formal and informal caregiving roles are needed to better understand its effect on burnout among healthcare professionals and to evaluate the role of work-privacy conflict.;

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Functional Limitations Experienced by Older Adults with Complex Care Needs and Its Impact on Access to Community Based Health and Social Care

Introduction: Multimorbidity is often combined with functional limitations among older adults. It is therefore important to ensure the built and social environment encourages older adults to safely age while maintaining independence. Previous findings have focused on the impact of the built environment as a barrier to an active lifestyle, but not specific to accessing community-based health and social care (CHSC). We propose to investigate the impact of patient and caregiver limitations on accessing care, including the impact of the built environment. Methods: Secondary thematic coding analysis was undertaken with 53 patient and 38 informal caregiver interviews from communities in Canada and New Zealand. Reported findings are from a broader research program titled, Implementing integrated Care for Older Adults with Complex Health needs (iCOACH). Older complex seniors were recruited for participation from a community primary healthcare team if they were greater than 50 years of age, and managing ongoing chronic conditions. Caregivers were unpaid informal carers of older adults. A specific thematic code about unmet need was extensively reviewed for examples related to the built environment and access to care. Results: Functional limitations hindered self-management at home as well as accessing CHSC. Attributes of the physical environment at home impacted the use of assistive devices, and impaired the ability to leave the home. Physical barriers within the social environment included the inability to use public transportation, access community programs, and conduct daily living tasks. Consequences from not being able to access supports included greater financial strain, social isolation, poor safety at home, lack of independence, and greater caregiver strain. Older adults appeared to be less impacted by access barriers when living in supportive housing settings, where on-site staff were available to provide direct support, or initiate referrals for additional services. Discussions: Experiences of older adults and informal caregivers highlighted access to care issues specific to the immediate and external physical environment, and examples of when support was efficiently provided. When considering how to best deliver services to people with complex care needs and their caregivers, it is important to consider how those services can be accessed. Conclusions: When services cannot be easily accessed, patients and caregivers may make critical trade-offs. To maintain independence and safety, it is important to design services which consider the adaptations and supports that are required to support older adults both at home, as well as the environment they have to navigate to access care. 

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Caring for Individuals with Chronic Illness and Minor Depression: Latino Perceptions of Caregiver Burden

Informal caregiving can be fundamental to disease management. Yet, the psychosocial, physical, and financial burden experienced by caregivers can be significant. In the US, Latinos experience increasing rates of chronic conditions, the highest uninsured rates in the country, and a growing dependence on informal caregivers. This article explores the impact of caregiving on caregivers of individuals with comorbid chronic disease and depression. Findings highlight the impact of caregiving on financial insecurity, balancing competing demands, increased emotional distress, and community supports. Findings support the inclusion of caregivers in disease management programs to enhance psychosocial outcomes for both caregivers and their patients.

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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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Characterizing Caregiving Intensity Among Mexican-origin Women Caregivers

Purpose of the Study: Objective (physical) caregiving burden has not often been associated with subjective (emotional) burden among Mexican-origin women caregivers. Yet, many studies show that Latina caregivers suffer from negative psychological outcomes related to caregiving at a higher rate than non-Latino Whites. This study considered whether self-rated intensity of ADL/IADL support explained the relationship between number of care recipient illnesses and caregiver emotional drain among Mexican American women caregivers.; Design and Methods: Participants included Mexican-origin women caregivers (n = 132) in East Los Angeles, CA who completed a survey that asked culturally appropriate questions about their experiences caring for elderly relatives.; Results: Logistic regression models indicated that ADL/IADL supports ranked as difficult were also chosen as causing emotional drain. Mediation models revealed a significant indirect effect of number of care recipient illnesses on caregiver emotional drain for English-speaking caregivers but not for Spanish-speaking caregivers. These results indicate that Mexican-origin women caregivers do experience subjective burden associated with specific objective ADL/IADL supports and suggest that culturally relevant survey design can assist in better understanding the emotional drain among this population.; Implications: Cultural values should be considered when discussing aspects of care provision with Mexican-origin women caregivers in order to elicit an accurate description of their informal caregiving experiences that may contribute to caregiver burden.

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Burden and Strain among Familial Caregivers of Patients with Dementia in China

Background: Alzheimer's disease is one of a variety of progressive and ultimately fatal neurodegenerative diseases that are characterized by a number of nervous and mental symptoms and behavior disorders. These problems are likely to cause burden and strain on caregivers. In this study, we demonstrated the level and relationship of burden and strain among caregivers of dementia patients in China. Methods: A total of 212 caregivers of family members with dementia responded to the survey. A 22-item of the Zarit Burden Interview and a 13-item Caregiver Strain Index (CSI) were used. Results: The results showed that women comprised 88.2% of caregivers, and 58.5% of caregivers reported a level of medium burden. Over one-half of the caregivers reported a level of high strain, with the low income group being more likely to have high levels of burden and strain. Conclusion: Chinese familial caregivers of patients with dementia experience a moderate level of burden and a high level of strain. The main strain factors that affected the burden were changes in personal plans, time demands, and emotional adjustment. 

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Modeling Cortisol Daily Rhythms of Family Caregivers of Individuals With Dementia: Daily Stressors and Adult Day Services Use

Objectives: The study examined the typical diurnal cortisol trajectory and its differential associations with an intervention, the adult day services (ADS) use, among a sample of family caregivers who experienced high levels of daily stress. Method: On hundred and sixty-five caregivers of individuals with dementia completed an 8-day diary on daily stressors, positive events, sleep quality, and ADS use. The caregivers also provided five saliva samples on each diary day. Daily cortisol trajectories were modeled as a function of time elapsed since awakening, and three spline growth curve models were fit to the cortisol data. Based on the best-fitting linear spline model, the effect of daily ADS use was examined at both daily and person levels. Covariates included daily experiences and other caregiving characteristics. Results: On ADS days, caregivers had a steeper cortisol awakening response (CAR) slope and a steeper morning decline. ADS use remained significant after controlling for covariates at both daily and person levels. Discussion: The findings suggested potential biophysiological benefits of daily ADS use for a sample that was under chronic stress and high levels of daily stress. 

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I just can't please them all and stay sane: Adult child caregivers’ experiences of family dynamics in care‐giving for a parent with dementia in Australia

Family caregivers of people with dementia who live within the community often experience stress and poor quality of life due to their care‐giving role. While there are many factors that affect this, one influential factor is the family context. This study focussed on adult child caregivers. It examined the specific ways that family dynamics contribute to adult child caregivers’ distress in the context of caring for a parent with dementia. Semi‐structured interviews were conducted with 17 participants who were adult child primary caregivers for a parent with dementia who was living within the community. Interviews were audiotaped and transcribed verbatim. Transcripts were analysed using thematic analysis. Four themes were identified that represented areas of particular concern and distress for the caregivers: family expectations and caregivers’ lack of choice in adopting the care‐giving role; denial and differential understandings of dementia among family members; differential beliefs and approaches to care‐giving among family members; and communication breakdown between family members. The findings demonstrate several avenues for further research including the development of interventions to support adult child caregivers and address problematic family dynamics within the context of caring for a parent with dementia.

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Outcome of a web-based mindfulness intervention for families living with mental illness - A feasibility study

Background: Families living with a person with mental illness can experience distress requiring therapeutic interventions. Web-based mindfulness interventions have shown beneficial health outcomes for both clinical and healthy populations, and may help families cope and overcome barriers that can otherwise hinder a help-seeking process.; Aims: To develop and assess outcomes of a web-based mindfulness intervention for families living with a person with mental illness.; Methods: A pilot study investigating an 8-week web-based mindfulness intervention with a pre-post design and follow-up after 3 months, with mindfulness as the primary outcome and perceived stress, caregiver burden and self-compassion as secondary outcomes. The study included a sample of 97 persons approached by advertisement in newspapers, newsletters, and online.; Results: The study showed significant improvements in levels of mindfulness post-intervention and at follow-up as well as significant improvements in levels of perceived stress, caregiver burden, and self-compassion both post-intervention and at follow-up.; Discussion: Acceptability and feasibility of the intervention were high, outcomes were relevant, and the intervention showed positive and significant results supporting the hypothesis that the intervention may help families cope with a stressful situation.; Conclusion: Further randomized controlled studies of the intervention are needed to investigate the intervention's effectiveness, including dose-effect studies.;

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Does it Matter if We Disagree? The Impact of Incongruent Care Preferences on Persons with Dementia and Their Care Partners

Purpose: To gain a better understanding of how actual and perceived incongruence of care preferences affects the psychosocial well-being of persons with dementia and their family caregiver. Design and Methods: In-depth interviews were conducted with 128 dyads each consisting of a person with dementia and a family caregiver. Baseline data from an intervention study were used to examine the relationship between the caregiver's care-related preferences, the person with dementia's care-related preferences, and the caregiver's perception of the person with dementia's preferences. Preferences for three care-related domains were recorded: personal activities of daily living (PADLs), instrumental activities of daily living (IADLs), and socioemotional issues. Primary outcomes included dyadic relationship strain, quality of life, and mood for both the caregiver and person with dementia. Results: Perceived incongruence of care preferences was a better predictor of negative psychosocial outcomes than actual incongruence. Actual incongruence for socioemotional care preferences was a predictor of greater relationship strain and worse mood for the person with dementia, whereas perceived incongruence for socioemotional care preferences was related to lower quality of life and worse mood for the caregiver. Interestingly, perceived incongruence for PADLs predicted higher quality of life and better mood for the caregiver. Implications: Findings have implications for communication between care partners, especially regarding socioemotional care preferences. Socioemotional preferences, which might be overlooked in the creation of a care plan, may influence the person with dementia's well-being. 

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A dyadic analysis of stress processes in Latinas with breast cancer and their family caregivers

Objective: Breast cancer diagnosis and treatment negatively affect quality of life for survivors and their family caregivers. The stress process model has been useful for describing the cascade of social and psychological experiences that culminate in degraded quality of life for both survivors and their family caregivers. This study is designed to test theoretically specified predictors of negative psychosocial outcomes in a dyadic context. Methods: Participants were 230 dyads composed of Latinas recently diagnosed with breast cancer and their primary family caregiver, who completed measures of socioeconomic status, stress, family conflict, depression, and anxiety. Data were analyzed following the Actor-Partner Interdependence Mediation Model in structural equation modeling. Results: For both survivors and caregivers, there were significant direct and indirect actor effects (through family conflict) of perceived stress on depression and anxiety. Several indirect partner effects were also evident in this sample. Specifically, caregivers' stress was predictive of survivors' depression and anxiety through survivors' increased perceptions of family conflict. Conclusions: As predicted by the stress process model, stress and family conflict were predictive of psychological distress in breast cancer survivors and their family caregivers. Significant partner effects in the Actor-Partner Interdependence Mediation Model suggest that there are some dyadic influences, particularly from caregivers' stress to survivors' perceptions of exacerbated family conflict. These findings show how strained family relationships can aggravate the well-being of cancer survivors and their family caregivers through this challenging experience. 

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Spiritual Distress Within Inpatient Settings-A Scoping Review of Patients' and Families' Experiences

Context: Spiritual distress contributes to patients' and families' experiences of care. Objectives: To map the literature on how seriously ill patients and their family members experience spiritual distress within inpatient settings. Methods: Our scoping review included four databases using search terms "existential" or "spiritual" combined with "angst," "anxiety," "distress," "stress," or "anguish." We included original research describing experiences of spiritual distress among adult patients or family members within inpatient settings and instrument validation studies. Each study was screened in duplicate for inclusion, and the data from included articles were extracted. Themes were identified, and data were synthesized. Results: Within the 37 articles meeting inclusion criteria, we identified six themes: conceptualizing spiritual distress (n = 2), diagnosis and prevalence (n = 7), assessment instrument development (n = 5), experiences (n = 12), associated variables (n = 12), and barriers and facilitators to clinical support (n = 5). The majority of studies focused on patients; two studies focused on family caregivers. The most common clinical settings were oncology (n = 19) and advanced disease (n = 19). Terminology to describe spiritual distress varied among studies. The prevalence of at least moderate spiritual distress in patients was 10%-63%. Spiritual distress was experienced in relation to self and others. Associated variables included demographic, physical, cognitive, and psychological factors. Barriers and facilitators were described. Conclusion:  Patients' and families' experiences of spiritual distress in the inpatient setting are multifaceted. Important gaps in the literature include a narrow spectrum of populations, limited consideration of family caregivers, and inconsistent terminology. Research addressing these gaps may improve conceptual clarity and help clinicians better identify spiritual distress. 

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Reduced mortality rates among caregivers: Does family caregiving provide a stress-buffering effect?

Multiple studies have confirmed a seemingly paradoxical finding that family caregivers have lower mortality rates than comparable samples of noncaregivers. Caregivers are often also found to report more symptoms of depression and higher stress levels, but psychological distress and mortality are rarely examined in the same study. This study tests a possible mechanism for the mortality effect by applying a theoretical model that posits psychological and physiological stress-buffering benefits from prosocial helping behaviors. Participants in the population-based REasons for Geographic and Racial Differences in Stroke (REGARDS) study included 3,580 family caregivers who were individually matched to 3,580 noncaregivers on 15 demographic, health history, and health behavior variables using a propensity score matching algorithm. Baseline measures of depressive symptoms and perceived stress levels were also collected. The results indicated that caregivers reported significantly more depressive symptoms and higher perceived stress levels than propensity-matched noncaregivers (ps < .0001). However, consistent with our previous analysis (Roth et al., 2013), an analysis of 7-year survival rates showed that caregivers had a 16.5% lower mortality rate than noncaregivers (hazard ratio = 0.835, 95% CI = 0.719, 0.970). Significant caregiving*psychological distress interaction effects supported the stress-buffering hypothesis. Both depressive symptoms and perceived stress scores were significant predictors of mortality for the matched noncaregivers (ps < .0001), but not for the caregivers (ps > .49). Family caregiving appears to be similar to other prosocial helping behaviors in that it provides stress-buffering adaptations that ameliorate the impact of stress on major health outcomes such as mortality. (PsycINFO Database Record 

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Trapped like a butterfly in a spider's web: Experiences of female spousal caregivers in the care of husbands with severe mental illness

Aims and objectives: To explore the experiences of female spousal caregivers in the care of husbands with severe mental illness. Background: Family involvement in the care of patients with chronic illness is essential to provide a backbone of support for them. However, little is known about how female spousal caregivers are confronted with challenges while taking care of their husbands with severe mental illness. Design: An exploratory qualitative study. Methods: Fourteen female spousal caregivers of people with severe mental illness (defined here as schizophrenia, schizoaffective disorders and bipolar affective disorders) were recruited using purposive sampling and were interviewed using a semistructured in‐depth interview method. Data were analysed by conventional content analysis until data saturation was achieved. Results: Care of a husband with severe mental illness had a disruptive influence on the emotional relationships of the family and resulted in emotional detachment over time. Despite the caregivers’ struggle to protect their families, the lack of supportive resources caused emotional exhaustion. Caregiving tasks interfering with their many other responsibilities, along with being a reference for family matters, led to loss of self. Consequently, they experienced psychological distress because of the transition to a caregiver role without any supportive resources. Conclusion: Constant caring, without supportive resources, forced them to do various roles and manage other issues within the family. Being unprepared for a caregiving role led to the psychological distress of female spousal caregivers. Therefore, adequate information, education and supportive resources must be provided for spouses to facilitate their transition to caregiving roles. Relevance to clinical practice: It is necessary to pay close attention to the spousal caregivers’ own mental health problems while they care for their mentally ill husbands. Mental health professionals should adopt a new approach to the prioritisation and planning of policies that support both family caregivers and patients. 

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To be or not to be? A caregiver's question: the lived experience of a stroke family during the first 18 months poststroke

Background: Disability following a stroke often requires family, commonly a spouse, to provide care enabling the stroke survivor to return home. Immediate or extended family and friends may help provide direct care or support the primary caregiver. While family members share the common stroke experience, this is lived within the context of separate lives. Research examining the individual nuances, roles and contribution of family and/or friends forming part of collective stroke networks, has largely been overlooked. Aim: This New Zealand study aimed to explore the lived experience of three stroke family members during the 18 months following a first‐ever stroke. Method: Hermeneutic phenomenology guided the study. Informed consent was obtained prior to individual interviews conducted 6 weeks, 12 months and 18 months poststroke. Findings: Three main themes emerged: (i) Being prepared, (ii) Where you stand changes the view and (iii) Relinquishing and reclaiming. Being prepared revealed how these family members anticipated the stroke and drew on personal and professional experience in facing the phenomenon. The second theme showed the influence of expectation and positionality on family members' experiences. Relinquishing and reclaiming identified loss, grief and a quest for equity in the synthesis of competing stroke survivor and caregiver desires. Conclusions: Familiarity with the caregiving role and experience of unreliable community services led stroke family members to question the primary caregiver's ability to resume caregiving following a family member's stroke. The primary caregiver was physically and emotionally spent, and rest home care for the survivor became the only self‐preserving option. A new caring arrangement was formulated seeking equity for both stroke survivor and caregiver. 

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Perceptions of family caregivers of cancer patients about the challenges of caregiving: a qualitative study

Background: The experience of caring for a family member with cancer is associated with several care‐related problems and challenges for the caregiver. The comprehensive and in‐depth understanding of the trials and tribulations of caregiving can be a step towards resolving the problems faced by family caregivers of these patients. Aim: The present study aimed to explore challenges faced by Iranian family caregivers of cancer patients. Materials and methods: The present qualitative study was conducted through in‐depth semi‐structured interviews held with 21 family caregivers of cancer patients selected through purposive sampling. Interviews continued until saturation of data. All interviews were recorded, transcribed and analysed through conventional content analysis. Finding: The codes extracted from interviews produced four main themes, including ‘confusion’, ‘uncertainty’, ‘disintegration’ and ‘setback’, which collectively caused suffering for family caregivers. Conclusion: Care provided in an atmosphere of suffering and discontent diminishes caregiver's quality of life and quality of patient care. Health planners should therefore consider the challenges and sufferings faced by family caregivers and should seek to obviate them through appropriate plans. 

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Exploration of Factors Related to Depressive Symptomatology in Family Members of Military Veterans With Traumatic Brain Injury

Traumatic brain injury (TBI) is a family affair, affecting those with the injury and their families. Psychological distress, often measured as depression or depressive symptoms, is highly prevalent among family members. Predictors of depression in family members of civilians with TBI have been examined, but predictors of depression in family members of military veterans have received very little research attention and are poorly understood. To address the knowledge gap, this study explored factors related to depressive symptoms in family members of veterans in the United States, using an ecological framework. Baseline data from 83 family members were used. Family members with higher caregiver burden, presence of a veteran with posttraumatic stress disorder (PTSD), and greater financial difficulty experienced significantly more depressive symptoms. Findings suggest that efforts to support family members and decrease their depression should aim to reduce caregiver burden and financial difficulty, and help family members cope with veteran PTSD and TBI. Family-focused interventions are needed. 

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The development of service user-led recommendations for health and social care services on leaving hospital with memory loss or dementia - the SHARED study

Background Health and social care services are under strain providing care in the community particularly at hospital discharge. Patient and carer experiences can inform and shape services. Objective To develop service user-led recommendations enabling smooth transition for people living with memory loss from acute hospital to community. Design Lead and co-researchers conducted semi-structured interviews with 15 pairs of carers and patients with memory loss at discharge, 6 and 12 weeks post-discharge and one semi-structured interview with health and social care professionals and Admiral Nurses. Framework analysis was guided by co-researchers. Two focus groups of study participants, facilitated by co-researchers, met to shape and finalize recommendations. Setting and participants Recruitment took place in acute hospitals in two National Health Service (NHS) Trusts in England. Patients were aged 65 and over, with memory loss, an in-patient for at least 1 week returning to the community, who had a carer consenting to be in the study. Results Poor delivery of services caused considerable stress to some study families living with memory loss. Three key recommendations included a need for a written, mutually agreed discharge plan, a named coordinator of services, and improved domiciliary care services. Discussion and conclusions Vulnerable patients with memory loss find coming out of hospital after an extended period a stressful experience. The SHARED study contributes to understanding the hospital discharge process through the eyes of the patient and carer living with memory loss and has the potential to contribute to more efficient use of resources and to improving health outcomes in communities. 

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Incongruent perceptions of the care values of hospitalized persons with dementia: a pilot study of patient-family caregiver dyads

Objective: Many difficult decisions are made in the inpatient hospital setting regarding the daily care of persons with dementia (PWDs). Incongruent perceptions of the PWD's care values limit the family caregiver's ability to make surrogate decisions. The objectives of this pilot study were to describe and identify determinants of incongruent perceptions in the hospital setting. Methods: Using multilevel modeling (MLM), we examined cross-sectional data collected from 42 PWD-family caregiver dyads. Results: There was a significant amount of incongruence, on average, for all four subscales representing the PWD's care values: autonomy = −0.33 (p< .001); burden = −.49 (p< .001); safety/quality of care = −.26 (p< .001); and social interactions = −.21 (p= .004). Family caregivers (CG) rated the importance of care values to the PWD as lower than the PWD rated the importance. Determinants of greater incongruence included higher relationship strain and fewer positive dyadic interactions. Conclusion: Our findings reveal significant levels of incongruence in perceptions of the PWD's values among dementia care dyads in the hospital setting. Our analysis suggests a potential impact of relationship variables on incongruence. Further research is needed around this overlooked interpersonal context for supporting the dementia care dyad in the hospital setting. 

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Attentional avoidant biases as mediators in the association between experiential avoidance and blood pressure in dementia family caregivers

Objectives: Experiential avoidance in caregiving (EAC) has been found to be related with dementia family caregivers' distress and blood pressure (BP). The association between EAC and avoidant attentional biases to emotional stimuli in dementia caregivers, and the potential mediating role of these attentional biases in the association between EAC and increased BP are explored. Method: Seventy nine dementia family caregivers performed a dot-probe task with emotional pictures (distressing and positive) varying in content (general vs. caregiving-related (CR)) and time of exposure (100 vs. 500 ms). They also completed measures of EAC, anxiety, depression, alexithymia and rumination, and their BP was measured. Results: EAC was associated with avoidant attentional biases to CR emotional pictures and negative pictures in general at 100 ms. Experiential Avoidance in Caregiving Questionnaire (EACQ) 'avoidant behaviors' and EACQ 'intolerance of negativity' factors were associated with diastolic and systolic BP, respectively, with attentional avoidance of CR emotional pictures (distressing and positive, respectively) mediating this association. Conclusion: Attentional avoidance of CR emotional stimuli may be the link between EAC and increased BP, as it prevents emotional processing and facilitates the maintenance of physiological activation. EAC may pose a risk for cardiovascular disease in dementia caregivers. 

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On being a caregiver: The experiences of South African family caregivers caring for cancer patients

The purpose of our study was to describe the experiences of family caregivers of cancer patients using the public healthcare system in South Africa. We used a qualitative descriptive design and conducted in‐depth interviews with 20 purposively selected family caregivers. Data saturation determined the sample size, and qualitative content analysis was used to analyse the data. Three themes arose from the data: emotional responses and feelings towards the cancer diagnosis, fulfilling the role of the caregiver and living and coping with a changed life and a changed person. Caring for a person with cancer was not easy. Participants were overwhelmed with the care responsibilities, which were aggravated by poverty. Some felt emotionally broken and alone in this journey and experienced the rest of their family as uncaring. The lives the participants knew changed and they had to put their own lives on hold and make sacrifices involving their children, work, possible relationships and their normal activities to care for the sick person. For some, the sick person they cared for changed and became a person they did not know. Most participants used religious practices to cope with their situation; however, some used other coping mechanisms, such as recreation and even smoking. 

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Falls and Hospitalizations Among Persons With Dementia and Associated Caregiver Emotional Difficulties

Background and Objectives: Falls and hospitalizations are adverse health events commonly experienced by persons with dementia (PWDs). These events often require urgent care from a family caregiver and may increase caregiver stress. We examine falls and hospitalizations among PWDs as predictors of caregivers' reported care-related emotional difficulty, in addition to care-related stressors. Research Design and Methods: Cross-sectional telephone survey of 652 informal caregivers for PWDs. A multinomial logistic regression examined falls (last month) and hospitalizations (prior year) experienced by PWDs as predictors of caregivers' care-related emotional difficulty, accounting for demographic characteristics and primary and secondary caregiving stressors. Results: Over 20% of caregivers reported high levels of care-related emotional difficulty. Controlling for demographic characteristics and primary and secondary caregiving stressors, the PWD's prior month fall was significantly associated with greater care-related emotional difficulty; the PWD's hospitalizations were not associated with care-related emotional difficulty. Discussion and Implications: Approximately 30% of PWDs had experienced a past year hospitalization and prior month fall, and one in five caregivers reported high emotional difficulty related to care. Although secondary strains and resources of caregiving were strong predictors of care-related emotional difficulty, PWDs' falls represent a significant stressor that increases odds of caregiver emotional difficulty over and above other strains. Consequently, a fall experienced by a PWD may represent a key time for clinicians to assess caregiver well-being. 

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Traumatic brain injury caregivers: A qualitative analysis of spouse and parent perspectives on quality of life

The objective of this qualitative study was to examine how family caregivers of individuals with traumatic brain injury (TBI) describe their quality of life in the context of their caregiving role. Fifty-two caregivers of adults with moderate or severe TBI (n = 31 parents,n = 21 partners/spouses; 77% female; mean age = 57.96 years, range = 34–78 years) were recruited from three data collection sites to participate in focus groups. Thematic content analysis was used to identify two main meta-themes: Caregiver Role Demands and Changes in Person with TBI. Prominent sub-themes indicated that caregivers are (1) overburdened with responsibilities, (2) lack personal time and time for self-care, (3) feel that their life is interrupted or lost, (4) grieve the loss of the person with TBI, and (5) endorse anger, guilt, anxiety, and sadness. Caregivers identified a number of service needs. A number of sub-themes were perceived differently by partner versus parent caregivers. The day-to-day responsibilities of being a caregiver as well as the changes in the person with the TBI present a variety of challenges and sources of distress for caregivers. Although services that address instrumental as well as emotional needs of caregivers may benefit caregivers in general, the service needs of parent and partner caregivers may differ.

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Music therapy and intimacy behaviors of hospice family caregivers in South Korea: A randomized crossover clinical trial

Family caregivers may experience emotional and relational distress due to decreased intimacy and communication with their loved one at end-of-life. The purpose of the study was to examine intimacy behaviors in a family-patient relationship at the end-of-life with the central research question: Is there a difference in frequency of family caregivers’ intimacy acts, defined and recorded as verbal intimacy, affective intimacy, and physical intimacy with their dying loved one when comparing music therapy and chaplaincy? Ten patient and family caregiver dyads participated in both a 15-min music therapy session, and a 15-min chaplaincy session in a randomized controlled crossover trial with AB/BA design. Sessions were video recorded and analyzed using the Family Intimacy Observation Scale, a researcher-developed tool. Intimacy behaviors were compared using the Wilcoxon Signed-rank Test. Music therapy resulted in statistically significant higher affective intimacy and physical intimacy behaviors toward a dying loved one when compared to chaplaincy. No statistically significant differences were found in overall verbal intimacy; however, the verbal behavior of “letting go of loved one” was significantly higher in music therapy versus chaplaincy. Music therapy may be an effective therapeutic modality to increase emotional and physical intimacy in a family-patient relationship at the end-of-life.

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What Behavioral and Psychological Symptoms of Dementia Affect Caregiver Burnout?

Objectives: Patients’ irritability and aggression have been linked to caregiver depression, but the behaviors that most burden caregivers are not yet definitively identified. This study examines the connection between behavioral and psychological symptoms of dementia (BPSD) and the burnout of caregivers caring for home-dwelling elders with dementia symptoms in Japan. Methods: 80 Japanese rural and urban family caregivers completed detailed questionnaires about their experiences in caring for demented family members. We statistically analyzed the results for correlations between types of dementia, Pines Burnout, and Caregiver Distress. Results: BPSD symptom severity significantly correlated with caregiver distress. The dementia symptoms most strongly correlated with caregiver burnout were: aggression, irritability, abnormal motor behavior, and hallucinations. Conclusions: Among the commonest symptoms, apathy, anxiety, and depression did not seriously aggravate caregiver burnout. Caregivers displayed higher burnout facing agitation/aggression, irritability, aberrant motor behavior, and hallucinations. Caregivers’ reported distress was surprisingly dissimilar to their burnout scores; patients’ delusions and anxiety led to higher distress reporting but not to burnout. Clinical Implications: Advance diagnosis of BPSD symptoms should be helpful to support nurses and caregivers of dementia patients. Particular support should be considered for caregivers and nurses of patients expressing aggression, irritability, abnormal motor behavior, and hallucination. 

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Profile and burden of care among caregivers of Ultra-Orthodox Frail Elders

Objective: A paucity of research exists on burden of care (BoC) and factors associated with it among minority groups, such as Ultra-Orthodox Jews. The aims of this study were (1) to portray the profile of Ultra-Orthodox Jewish (UOJ) caregivers and their BoC;(2) to explore relations between care recipients' characteristics, care situations, characteristics of caregivers, and BoC. Methods: A total of 107 UOJ (66 women, 41 men) family caregivers were interviewed face to face in their homes, using valid and reliable measures. Results: Participants reported moderate BoC and high level of social support. Caregiver's self-rated health, caregiver's anxiety, and social support emerged as significant predictors of caregiver burden. Conclusions: Our findings might help social workers and other health professionals to better understand the unique characteristics of the UOJ community and to target caregivers with higher anxiety, lesser social support, and poorer self-rated health in order to reduce their caregiving burden. 

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Participation and interest in support services among family caregivers of older adults with cancer

Objective: The purpose of this study was to describe distressed and underprepared family caregiver's use of and interest in formal support services (eg, professional counseling, education, organizational assistance). Method: Cross-sectional mail survey conducted in communities of 8 cancer centers in Tennessee, Alabama, and Florida (response rate: 42%). Family caregivers of Medicare beneficiaries with pancreatic, lung, brain, ovarian, head and neck, hematologic, and stage IV cancers reported support service use and completed validated measures of depression, anxiety, burden, preparedness, and health. Results: Caregivers (n = 294) were on average age 65 years and mostly female (73%), White (91%), and care recipients' spouse/partner (60%); patients averaged 75 years were majority male (54%) with lung cancer (39%). Thirty-two percent of caregivers reported accessing services while 28% were "mostly" or "extremely" interested. Thirty-five percent of caregivers with high depressive symptoms (n = 122), 33% with high anxiety symptoms (n = 100), and 25% of those in the lowest quartile of preparedness (n = 77) accessed services. Thirty-eight percent of those with high depressive symptoms, 47% with high anxiety symptoms, and 36% in the lowest quartile of preparedness were "mostly" or "extremely" interested in receiving services. Being interested in support services was significantly associated with being a minority, shorter durations of caregiving, and with higher stress burden. Conclusions: A large proportion of family caregivers, including those experiencing depression and anxiety symptoms and who were underprepared, are not using formal support services but have a strong interest in services. Strategies to increase service use may include targeting distressed caregivers early in their caregiving experience. 

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Relation Among Anxiety and Family Burden in Primary First-Degree Caregivers of Outpatients with Mental Disorders in Turkey

The aim of this study was to determine the relation among anxiety and family burden in primary first-degree relative caregivers of outpatients with mental disorders in Turkey. Data were collected with patients'primary first-degree relative caregivers via the Information Form, Beck Anxiety Inventory (BAI), and Perceived Family Burden Scale (PFBS). In all, 481 caregivers (325 women and 156 men) participated in this study. Based on this study's results, primary caregivers of patients with mental disorders had a moderate level anxiety, and as anxiety increased, family burden also increased. Those results suggest that mental health nurses should plan interventions not only for patients, but also for their family member or their caregivers to decrease anxiety level. 

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The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia: A qualitative study

Aim: To explore the experience and the preparedness of family carers in their caregiving role as best interest decision-makers of a relative living with advanced dementia. Background: The prevalence of dementia is a global issue. The role of being a carer of a relative living with dementia does not necessarily lessen once they are admitted to a nursing home. Best interest decision-making including end-of-life care decisions need to be made and reaching these choices can be challenging. The preparedness of family carers in this role needs greater understanding. Design: Descriptive qualitative study. Methods: During 2015 twenty semi-structured interviews were conducted of family carers of nursing home residents living with advanced dementia, then analysed using Braun and Clarke's thematic analysis. Results: Three themes were identified: (1) Caring for someone living with dementia. The impact on the carer's holistic well-being and their experience of being a best interest decision-maker; (2) Accessing support. The influential nature of formal and informal networks; (3) Perceived knowledge and understanding of the dementia trajectory of carers and nursing staff. Conclusion: The experiences and preparedness of informal carers is a reflection of their personal response, but the distress experienced highlights the significant need of adequate support availability and of enhancing nursing staffs' dementia expertise to maximize their role in facilitating best interest decision-making. This has significant implications for nursing practice and for service user and nursing staff education. Considering the global impact of dementia, our findings have international relevance to similar nursing homes across the world. 

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The experience of psychological distress in family caregivers of people with dementia: A cross‐sectional study

Purpose: To evaluate the degree of psychological distress in family caregivers of people with dementia. Design and Methods: A nonprobabilistic sample of 54 dyads (people with dementia and family caregivers) was recruited. A sociodemographic questionnaire, the Brief Symptom Inventory (BSI), and the Barthel Index were used for data collection. Findings: About half of the caregivers had significant levels of psychological distress. Caregivers showed high scores in some BSI dimensions: somatization, obsessive–compulsion, interpersonal sensitivity, anxiety, and paranoid ideation. Practice Implications: Alleviating the caregivers’ distress is likely to have positive effects on the overall health and capacity to care. Frameworks for providing palliative care to people with advanced dementia and support the caregivers would enhance the quality of care provided and may reduce the distress on the caregiver. 

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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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Randomized Controlled Trial of Inner Resources Meditation for Family Dementia Caregivers

Objective: This randomized controlled trial examined the comparative effectiveness of 2 interventions for improving diurnal cortisol slope and life satisfaction and reducing stress symptoms among older female dementia family caregivers.; Method: Thirty-one family dementia caregivers were randomized to 8 weeks of Inner Resources for Stress mindfulness meditation and mantra training (IR) or psychoeducation and telephone support (PTS).; Results: Intention-to-treat analyses revealed statistically significant pre-post improvements in diurnal cortisol slope and overall life satisfaction, but not depression or self-efficacy, in the IR relative to the PTS group. Adherence to between-session meditation practice was significantly associated with decreases in depression and self-reported improvements in ability to cope with stress. In addition, IR participants rated the overall benefits of the program more highly than the PTS group.; Conclusion: These results indicate that mindfulness meditation and mantra has promise as a feasible and effective caregiver intervention for quality of life and physiological responding to stress.; © 2017 Wiley Periodicals, Inc.

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Psychological distress, perceived burden and quality of life in caregivers of persons with schizophrenia

Background: Caregiving in schizophrenia is a demanding and exhausting activity that challenges the physical and emotional resources of family caregivers. In traditional societies such as India, this is further compounded by illiteracy, ignorance and religious and cultural explanations attributed to mental illness.; Aims: This study aimed to assess primary caregivers of persons with schizophrenia in terms of their perceived burden, manifestation of psychological distress and quality of life (QOL).; Methods: The study used a quantitative cross-sectional design and survey methodology to collect data from caregivers in a hospital setting in Thanjavur, India. Standardized instruments were used to collect data from patients and their caregivers.; Results: High perceived burden and lower QOL were seen in the majority of caregivers. They also manifested high levels of anxiety and depression. Patient characteristics such as age, gender, symptoms and duration of illness did not influence the perceived burden of caregivers, while positive and negative symptoms and the duration of illness were correlated with their QOL.; Conclusions: Findings indicate the need for intervention for family caregivers to enable them cope more effectively with the demands of caregiving. Psychoeducation and participation in peer support groups are advocated as low resource and effective outcome strategies for caregivers in India.;

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Frail elderly with and without cognitive impairment at the end of life: Their emotional state and the wellbeing of their family caregivers

Purpose Of the Study: (1) To identify the main predictors of the emotional state of the frail elderly at the end-of-life and that of their primary family caregivers, taking into consideration the presence/absence of significant cognitive impairment in the patient and (2) to analyse the relationship between the emotional state of the patient and that of their primary family caregiver.; Methods: Our study is cross-sectional. 85 frail elderly patients at the end-of-life and their primary family caregivers participated. Information on the following aspects was collected: (1) From the patients: Socio-demographics, Functional independence, and Cognitive and Emotional state; (2) From the caregivers: Socio-demographics, Emotional state and Overburden (according to Zarit Scale). Descriptive, correlational and linear regression analyses were computed using SPSS.; Results: The models that best predict the observed variance in the emotional state of patients (with or without significant cognitive impairment) include the same variables: functional independence of the patient and caregiver's overburden. Similarly, the models that best predict the observed variance in the emotional state of family caregivers include: cognitive state of the patient and caregiver's overburden.; Implications: The overburden of the family caregiver stands out as a key factor in the reduction of the emotional distress of frail elder patients -whether or not they present significant cognitive impairment- and that of their family caregivers. Our results suggest that reducing overburden of the family caregiver may also reduce the emotional distress of the patient and that of their family caregiver.; Copyright © 2017 Elsevier B.V. All rights reserved.

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Do stress and support matter for caring? The role of perceived stress and social support on expressed emotion of carers of persons with first episode psychosis

Background: Caring for a person with first episode psychosis (FEP) is a challenging and distressing task for the carers. The carers' stress in the early stage of psychosis can increase their expressed emotion (EE) while social support is hypothesized to decrease EE. However, the influence of stress and social support on carers' EE is not well understood in FEP.; Aim: To examine how the stress and social support shape expressed emotion in the carers of FEP.; Methods: Seventy one carers of the patients with non-affective FEP were recruited from the inpatient psychiatry ward of a tertiary mental health care center in South India. The family questionnaire, perceived stress scale and multidimensional scale of perceived social support were used to measure their EE, stress and social support respectively.; Results: Carers experienced high level of perceived stress, EE and poor social support. Perceived stress significantly increased EE (β=0.834; p<0.001) and social support did not significantly influence EE (β=-0.065; p>0.05). Perceived stress predicted 76 percent of the variance on EE (Adjusted R2=0.761).; Conclusion: The results emphasize high level of stress and EE in carers of patients with FEP that implies the need for appropriate psychosocial interventions to manage their stress.; Copyright © 2016 Elsevier B.V. All rights reserved.

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Negative Consequences of Family Caregiving for Veterans With PTSD and Dementia

Recent research shows veterans with posttraumatic stress disorder (PTSD) are twice as likely as other veterans to develop dementia. However, no studies to date have examined the impact of co-existing PTSD and dementia on family caregivers, who provide the majority of care to these veterans. Using the Stress Process Model, the current investigation explored the similarities and differences in psychosocial, health, and service use outcomes among caregivers assisting veterans with PTSD and dementia compared with caregivers assisting veterans with dementia only. Caregivers of veterans with PTSD and dementia indicated that their relative exhibited more difficult behavior symptoms and used more community services. These caregivers also reported more difficulties understanding veterans' memory problems and more physical strain. Together, results suggested caregivers of veterans with both PTSD and dementia were at greater risk of negative caregiving consequences. Implications and suggestions for future research are discussed.

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Beyond quality of life: a cross sectional study on the mental health of patients with chronic kidney disease undergoing dialysis and their caregivers

Background: Patients with terminal chronic kidney disease (CKDT) requiring renal replacement therapies (RRT) undergo important changes in living habits and frequently need caregiving. These patients and their caregivers are risk groups for the development of physical and psychological symptoms. This study aimed to evaluate the prevalence of anxiety, depression, stress, fatigue, social support, and quality of life in patients with CKD and their caregivers.; Method: This cross sectional study was conducted with 21 patients and their caregivers, from January to September 2015. We included patients aged over 18 years, with at least 6 months on dialysis treatment, and caregivers who were family members. The participants' social, demographic, clinical, laboratory, and psychological variables were evaluated. A descriptive analysis and an examination of the association between patients and caregivers were performed.; Results: Among patients, we observed that 38.1% had symptoms that indicated anxiety and depression. The average score for practical social support was 3.15 ± 0.769 and that for emotional social support was 3.16 ± 0.79. As for fatigue, 14.3% of patients reported being 'extremely tired' and 14.3% reported that they engaged in all the activities they usually performed before the illness. Further, 57.1% presented stress, and of these, 66.7% were at the resistance stage, with predominance of psychological symptoms in 60.0%. The quality of life domain in terms of functional capacity (FC) presented a correlation with haemoglobin level (r = 0.581, p = 0.006) and non-anaemic patients presented better FC. Among caregivers, we observed symptoms that indicated anxiety and depression in 33.3% of the sample. Caregivers exhibited an average score of 2.88 ± 0.77 for practical social support and 3.0 ± 0.72 for emotional social support. Further, 14.3% reported being 'extremely tired' and 28.8% reported that they engaged in all activities that they usually performed before the patient's illness. When comparing the two groups (patients vs. caregivers), we observed that they presented similar results for the presence of anxiety, depression, and fatigue. Caregivers received less social support than patients did. Both groups presented similar predominance of stress levels; however, patients presented more predominance of psychological symptoms. With reference to quality of life, patients and caregivers presented similar results on the social aspects, vitality, mental health, and mental domains.; Conclusion: The mental health characteristics of patients and caregivers were similar, and within the context of dialysis for renal disease, both must undergo specific interventions.

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Health related quality of life during cancer treatment: Perspectives of young adult (23-39 years) cancer survivors and primary informal caregivers

Purpose: There is a paucity of information regarding health related quality of life (HRQoL) of young adults (YAs) with cancer and caregivers. Therefore, we characterize YA and caregiver perspectives on the impact of cancer and its treatment on HRQoL.; Methods: We conducted descriptive qualitative in-depth, semi-structured interviews with YAs receiving cancer care at an academic health center in Albuquerque, New Mexico (USA) and primary informal caregivers. The interviews, conducted from September through December 2015, focused on perspectives on the impact of the disease and its treatment in terms of physical and emotional effects, coping, and strategies to enhance HRQoL. We used an iterative thematic analysis approach to identify emergent themes and create a coding structure.; Results: We reached thematic saturation after interviewing 8 YAs and 8 caregivers. YAs and caregivers discussed cancer triggered challenges such as anxiety, depression, isolation, fear, and financial hardships. YAs and caregivers coped by maintaining positive perspectives, relying on friends and family, and prayer. Caregivers discussed how expectations for and experiences of a "good day" changed depending on their loved ones' stage of cancer treatment. YAs navigated challenges by focusing on activities and thoughts that provided meaning to their lives. YAs and caregivers suggested strategies to enhance HRQoL through patient/provider communication, support services, and decision making tools as potential mechanisms for grounding patient-centered interventions to improve cancer care.; Conclusions: Implications include the development and evaluation of informational and behavioral interventions tailored and targeted to address the pragmatic needs of YAs undergoing cancer treatment and informal caregivers.; Copyright © 2017 Elsevier Ltd. All rights reserved.

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A tailored relocation stress intervention programme for family caregivers of patients transferred from a surgical intensive care unit to a general ward

Aims and Objectives: To develop and examine a relocation stress intervention programme tailored for the family caregivers of patients scheduled for transfer from a surgical intensive care unit to a general ward.; Background: Family relocation stress syndrome has been reported to be similar to that exhibited by patients, and investigators have emphasised that nurses should make special efforts to relieve family relocation stress to maximise positive contributions to the well-being of patients by family caregivers.; Design: A nonequivalent control group, nonsynchronised pretest-post-test design was adopted.; Methods: The study subjects were 60 family caregivers of patients with neurosurgical or general surgical conditions in the surgical intensive care unit of a university hospital located in Incheon, South Korea. Relocation stress and family burden were evaluated at three times, that is before intervention, immediately after transfer and four to five days after transfer.; Results: This relocation stress intervention programme was developed for the family caregivers based on disease characteristics and relocation-related needs. In the experimental group, relocation stress levels significantly and continuously decreased after intervention, whereas in the control group, a slight nonsignificant trend was observed. Family burden levels in the control group increased significantly after transfer, whereas burden levels in the experimental group increased only marginally and nonsignificantly. No significant between-group differences in relocation stress or family burden levels were observed after intervention.; Conclusions: Relocation stress levels of family caregivers were significantly decreased after intervention in the experimental group, which indicates that the devised family relocation stress intervention programme effectively alleviated family relocation stress.; Relevance To Clinical Practice: The devised intervention programme, which was tailored to disease characteristics and relocation-related needs, may enhance the practicality and efficacy of relocation stress management and make meaningful contribution to the relief of family relocation stress, promote patient recovery and enhance the well-being of patients and family caregivers.; © 2016 John Wiley & Sons Ltd.

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How family caregivers help older relatives navigate statutory services at the end of life: A descriptive qualitative study

Background: A key challenge in meeting the palliative care needs of people in advanced age is the multiple healthcare and social service agencies typically involved in their care. The 'patient navigator' model, originally developed in cancer care, is the professional solution most often recommended to address this challenge. However, little attention has been paid, or is known, about the role that family carers play in enabling their dying relatives to negotiate service gaps. Aim: To explore the role family caregivers play in helping people dying in advanced old age navigate health services at the end of life. Design: Qualitative study using semi-structured interviews and analysed via thematic analysis. Setting/participants: A total of 58 interviews were conducted in New Zealand with the family caregivers of 52 deceased older relatives who had been participants in Life and Living in Advanced Age: a Cohort Study in New Zealand. Results: Fragmentation of services was the key concern, causing distress both for the older person and their family caregivers. Carers identified and engaged with appropriate services in order to facilitate care and treatment. Their involvement was not always met by healthcare professionals with respect or regard to their knowledge of the older person's needs. Conclusion: Family caregivers are trying to help their older relatives overcome the limitations of fragmented health systems at the end of life. They are doing so at times by stepping in to perform patient navigator tasks usually conceptualised as a role for statutory services to carry out. Programmes and services need to be implemented that will better support family carers who are acting as care navigators.

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Family carers' experiences of coping with the deaths of adults in home settings: A narrative analysis of carers' relevant background worries

Background: Internationally, evidence on the support needs of family carers who look after a terminally ill adult in home settings is incomplete. Aim: To illustrate the relevance of 'relevant background worries' in family carers' accounts of caring at home for a dying adult. Design: A qualitative cross-sectional observational study was conducted in England, United Kingdom, in 2011-2013 on the experiences of adult family carers (n = 59) of older dying adults (aged 50+ years) with malignant and/or non-malignant conditions. Interviews occurred post-bereavement. This article reports on a subset of participants' interview transcripts (n = 30) where narrative analysis was undertaken. Setting/participants: Carers were interviewed in their home setting, having been purposively recruited via general practitioner practices in two study sites in England. The subset of participants (n = 30) was purposively selected from the parent sample with reference to carers' age, relationship to the patient, family circumstances and study sites. Results: Evidence is provided on the importance of what we conceptualise as carers' 'relevant background worries'; these varied in nature, significance and impact. Four case studies are presented where these worries constituted psychosocial factors that impacted on caregivers' actions and emotional well-being. Two themes are discussed: (1) whether relevant background worries are important enough to be identified and responded to and (2) how such worries could be picked up and managed by professionals. Conclusion: It is argued that the quality of clinical practice could be improved if specialist palliative care teams in community contexts both identified and responded to significant support needs associated with family carers' relevant background worries

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Perceived Stress in Family Caregivers of Individuals With Mental Illness

The current study aimed to measure the stress levels of family caregivers of individuals with mental illness and compare their stress levels according to the diagnosis and other sociodemographic characteristics. The sample comprised 310 family caregivers of individuals with mental illness in Jordan. Family caregivers completed a demographic checklist and the Arabic version of the Perceived Stress Scale 10-Item (PSS-10) questionnaire. A significant difference was found in PSS-10 levels among family caregivers according to gender, diagnosis of their family member, and time since diagnosis. Female caregivers reported significantly higher stress levels than male caregivers. Family members of individuals with schizophrenia reported the highest stress levels (p < 0.001). Results also indicated that there was a significant negative correlation between PSS-10 levels of family caregivers and time since diagnosis. Investigating stress levels in family members of individuals with mental illness may be helpful when designing interventions to reduce such stress. [Journal of Psychosocial Nursing and Mental Health Services, 55(6), 30-35.].; Copyright 2017, SLACK Incorporated.

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Caregiver burden and prevalence of depression, anxiety and sleep disturbances in Alzheimer's disease caregivers in China

Aims and Objectives: To evaluate caregiver burden and factors that influence this burden among caregivers and patients with Alzheimer's disease in China.; Background: Long-term care can reduce the quality of life for caregivers and result in both mental and physical exhaustion. However, little is known about caregiver burden and associated factors in China.; Design: The study had a quantitative cross-sectional design.; Methods: A total of 309 caregivers and their patients were included in the study. The patients' cognitive, psychological and functional status and their caregivers' burden, sleep quality and mental state were evaluated. Descriptive analyses, single-factor regression and stepwise factor regression were used to determine the effects of various factors on caregiver burden.; Results: Older females and spouses still play an important role in providing family care for those with dementia. Most of the caregivers were the sole full-time caregiver and had little time for themselves. Sleepiness was a common physical problem for caregivers, and some of them had moderate to severe depression and anxiety. A lower functional status of the patient was associated with higher caregiver burden. Poorer physical status compared with before caregiving began, lower life satisfaction, and higher degrees of depression and anxiety were associated with higher caregiver burden.; Conclusion: Depression, anxiety and sleep problems are the main challenges that are faced by family caregivers of patients with Alzheimer's disease. Caregivers' functional status, lower life satisfaction, depression and anxiety influenced caregiver burden. Caregiver burden was related to the severity of the patient's dementia and the personal factors of the caregivers.; Relevance To Clinical Practice: To provide information about caregivers' current status while caring for patients with Alzheimer's disease and to understand caregiver burden and its related factors. Professionals who work with Alzheimer's disease should pay more attention to caregiver burden, especially those with mental and physical problems.; © 2016 John Wiley & Sons Ltd.

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Six key topics informal carers of patients with breathlessness in advanced disease want to learn about and why: MRC phase I study to inform an educational intervention

Introduction: Breathlessness is a common symptom of advanced disease placing a huge burden on patients, health systems and informal carers (families and friends providing daily help and support). It causes distress and isolation. Carers provide complex personal, practical and emotional support yet often feel ill-prepared to care. They lack knowledge and confidence in their caring role. The need to educate carers and families about breathlessness is established, yet we lack robustly developed carer-targeted educational interventions to meet their needs.; Methods: We conducted a qualitative interview study with twenty five purposively-sampled patient-carer dyads living with breathlessness in advanced disease (half living with advanced cancer and half with advanced chronic obstructive pulmonary disease (COPD). We sought to identify carers' educational needs (including what they wanted to learn about) and explore differences by diagnostic group in order to inform an educational intervention for carers of patients with breathlessness in advanced disease.; Results: There was a strong desire among carers for an educational intervention on breathlessness. Six key topics emerged as salient for them: 1) understanding breathlessness, 2) managing anxiety, panic and breathlessness, 3) managing infections, 4) keeping active, 5) living positively and 6) knowing what to expect in the future. A cross-cutting theme was relationship management: there were tensions within dyads resulting from mismatched expectations related to most topics. Carers felt that knowledge-gains would not only help them to support the patient better, but also help them to manage their own frustrations, anxieties, and quality of life. Different drivers for education need were identified by diagnostic group, possibly related to differences in caring role duration and resulting impacts.; Conclusion: Meeting the educational needs of carers requires robustly developed and evaluated interventions. This study provides the evidence-base for the content of an educational intervention for carers of patients with breathlessness in advanced disease.

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Pre-admission functional decline in hospitalized persons with dementia: The influence of family caregiver factors

Older adults with dementia are more likely than those who do not have dementia to be hospitalized. Admission functional (ADL) performance is a salient factor predicting functional performance in older adults at discharge. The days preceding hospitalization are often associated with functional loss related to the acute illness. An understanding of functional changes during this transition will inform interventions to prevent functional decline. This secondary analysis examined data from a study that evaluated a family educational empowerment model and included 136 dyads (persons with dementia and their family caregiver). AMOS structural equation modeling examined the effects of family caregiver factors upon change in patient ADL performance (Barthel Index) from baseline (two week prior to hospitalization) to the time of admission, controlling for patient characteristics. Eighty-two percent of the patients had decline prior to admission. Baseline function, depression, and dementia severity, as well as Family caregiver strain, were significantly associated with change in pre-admission ADL performance and explained 40% of the variance. There was a good fit of the model to the data (Χ2=12.9, p=0.305, CFI=0.97, TLI=0.90, RMSEA=0.05). Findings suggest the need for a function-focused approach when admitting patients with dementia to the hospital. FCG strain prior to hospitalization may be a factor impacting trajectory of functional changes in older person with dementia, especially in those with advanced dementia. FCG strain is an important assessment parameter in the risk assessment for functional decline, to be considered when engaging the FCG in the plan for functional recovery.; Copyright © 2017 Elsevier B.V. All rights reserved.

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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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Impact of psycho-education on burden and other correlates of caregivers of patients suffering from bipolar mood disorder

Psycho education to family members has been emerged as an important prerequisite to modern psychiatric treatment and rehabilitation, since through psycho education many problematic areas related to patient care and compliance with the treatment can be successfully addressed. Being an indispensable adjunct to modern psychiatric treatment it is more efficacious in targeting all areas of patient's illness and functionality quite suitably than any single therapy based approach. Effects of bipolar disorder can be far-reaching, both into the lives of patients and those around them. Severe cognitive, emotional and behavioural dysfunctioning related to illness lead to burden, expressed emotion, life stress, avoidance coping, decreased quality of life and lesser social support in family members of patients because of their inability in understanding the meaning of psychiatric and neurological symptoms. Primary caregiver plays multiple role in care of the ill persons, not only they take day-to-day care of the patient, supervise medications, take the patient to the hospital and look after the financial needs but also they have to bear with the behavioral disturbances in the patient. Experiencing considerable stress and burden they might develop an unhealthy coping style which may adversely affect the caregiving function and their own health. Interventions techniques have proven efficacy in reducing relapse rates and negative impact of symptoms on caregivers and can diminish negative attitudes and increase the willingness in the caregivers in providing care to patients. Through intervention caregivers are imparted knowledge about illness, its course, etiology, warning signs and various ways of managing the patient during distress and dysfunctioning. Psychoeducational training is a way of offering help for caregivers, representing a forum for knowledge sharing, and in which the primary focus is on psychological themes aimed at carers developing coping skills and strategies. It helps caregivers to become skilled in closer monitoring of disease treatment and symptoms which can have major implication in the evolution of the disease over the long term. The goals of these efforts are educational, prevention and to promote psychological health among caregivers as well as the patients. 

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Mental Wellbeing of Family Members of Autistic Adults

Family members are often the primary caregiver for autistic adults and this responsibility may impact on the carer's wellbeing and quality of life. 109 family members of autistic adults completed an online survey assessing their wellbeing relating to their caring role for their autistic relative. Family members who were supporting an autistic relative with co-occurring mental health difficulties and who they reported as unprepared for the future, self-reported higher levels of worry, depression, anxiety and stress, and poorer quality of life. These findings emphasise the importance of support for family members of autistic adults, whether through external services to support their relative or individual mental health support for the carer.

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Physical and psychological health of family carers co‐residing with an adult relative with an intellectual disability

Background: Providing long‐term care to an adult relative with intellectual disability can impact negatively on caregivers’ health and well‐being. Methods: Data were collected via online and postal questionnaires on 110 family carers’ physical and psychological health, family stress and perceived positive gains from caring. Psychological adaptation and carers’ satisfaction with available support were also examined. Results: Study participants reported more health problems than general populations. Higher support needs of care recipients were associated with increased family stress. Carers being female were associated with lower family stress. Older age and better socio‐economic position were associated with better psychological outcomes. Other associations were consistent with psychological adaption and perceived helpfulness of support buffering negative outcomes and facilitating positive gains from caring. Conclusions: Family carers of adults with intellectual disability appear to experience poorer health outcome than population norms. Adaption to the caregiving role may buffer negative outcomes. Further large scale, population‐based, longitudinal research is needed.

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The experiences of caregivers of patients with delirium, and their role in its management in palliative care settings: an integrative literature review

Objectives: To explore the experiences of caregivers of terminally ill patients with delirium, to determine the potential role of caregivers in the management of delirium at the end of life, to identify the support required to improve caregiver experience and to help the caregiver support the patient. Methods: Four electronic databases were searched-PsychInfo, Medline, Cinahl and Scopus from January 2000 to July 2015 using the terms 'delirium', 'terminal restlessness' or 'agitated restlessness' combined with 'carer' or 'caregiver' or 'family' or 'families'. Thirty-three papers met the inclusion criteria and remained in the final review. Results: Papers focused on (i) caregiver experience-distress, deteriorating relationships, balancing the need to relieve suffering with desire to communicate and helplessness versus control; (ii) the caregiver role-detection and prevention of delirium, symptom monitoring and acting as a patient advocate; and (iii) caregiver support-information needs, advice on how to respond to the patient, interventions to improve caregiver outcomes and interventions delivered by caregivers to improve patient outcomes. Conclusion: High levels of distress are experienced by caregivers of patients with delirium. Distress is heightened because of the potential irreversibility of delirium in palliative care settings and uncertainty around whether the caregiver-patient relationship can be re-established before death. Caregivers can contribute to the management of patient delirium. Additional intervention studies with informational, emotional and behavioural components are required to improve support for caregivers and to help the caregiver support the patient. Reducing caregiver distress should be a goal of any future intervention.

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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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Parents caring for adult children with physical disabilities: the impact of hope and closeness on caregiving benefits

In the present study, we examined 82 parents of adult children with physical disabilities. The parents described the benefits of caregiving, and reported positive feelings about their involvement in caregiving as well as a sense of personal growth as a result of caregiving. When parents perceived caregiving as causing less emotional strain (subjective burden), and when they felt higher levels of closeness with their offspring, and expressed higher levels of hope, they were more likely to indicate that caregiving yielded benefits. In the discussion, we focus on the importance of developing closeness and hope among parents who care for their adult offspring with physical disabilities. The implications of this conclusion for social work intervention are also discussed.

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Promoting participation of people with dementia in research

Dementia is a neurodegenerative disorder that can have a severe effect on the quality of life of individuals with the condition, and can place considerable strain on informal carers and healthcare systems. Research is required to identify ways to prevent or delay the onset of dementia. The government is committed to dementia research, yet funding for dementia research is eclipsed by funding for research into other conditions. Moreover, dementia research can only progress if individuals with the condition participate in research studies. This article discusses barriers associated with research into dementia and describes a UK government initiative, Join Dementia Research, which supports research participation for people with dementia.

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The development and validation of a quality of life measure for the carers of people with Parkinson's disease (the PDQ-Carer)

Background: Parkinson’s disease (PD) can have substantial effects not only on the quality of life of those diagnosedwith the condition but also upon the informal carers who provide support and assistance to them. However, to date no well-validated carer specific quality of life measure has been developed for carers of people with PD.

Objective: This paper documents the development and validation of a PD specific carer quality of life scale.

Methods: In depth interviews were undertaken with carers of people with PD. The interviews were transcribed and analysed thematically to derive a pool of potential items for the questionnaire. A pilot survey was used to refine the initial version of the questionnaire. A developmental survey was undertaken and the results analysed to produce the final 29-item measure. A validation survey was then undertaken to assess the construct validity and reliability of the measure.

Results: Survey results suggest a 29-item questionnaire tapping four dimensions of quality of life (Social and Personal Activities, Anxiety and Depression, Self care, and Strain). Internal consistency reliability was found to be high for all domains. Data completeness was high. Construct validity (assessed by correlations with a generic measure of quality of life) confirmed prior hypotheses.

Conclusion: The 29-item Parkinson Disease Questionnaire for Carers (PDQ-Carer) is a short, meaningful quality of life instrument, which taps areas of specific salience and concern to PD carers.

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High score on the Relative Stress Scale, a marker of possible psychiatric disorder in family carers of patients with dementia

Objective: To compare the scores on the Relative Stress Scale (RSS) with those on the General Health Questionnaire (GHQ) and the Geriatric Depression Scale (GDS), and to establish a cut-off score for RSS in order to distinguish carers with symptoms of psychiatric disorders from those without.

Methods: One hundred and ninety-four carers of 194 patients suffering from dementia according to ICD-10 were included in the study. Burden of care was assessed by the 15-items RSS, and psychiatric symptoms by means of the GHQ-30 and the 30-items GDS. A case score above 5 on GHQ and above 13 on GDS were used to define carers with probable psychiatric morbidity. Sensitivity (SS), specificity (SP), accuracy and likelihood ratio for a positive test (LR+) were calculated for different cut-points of the RSS.

Results: Fifty-six percent of the carers had a GHQ score above 5, and 22% had a GDS score above 13. A two-step cluster analysis using 192 of the 194 carers, identified three groups of carers; a low risk group for psychiatric morbidity (LRG), 82 carers with GHQ ≤ 5 and GDS ≤ 13; a medium risk group (MRG), 69 carers with GHQ > 5 and GDS ≤ 13; and a high-risk group (HRG), 40 carers with GHQ > 5 and GDS > 13. The optimal RSS cut-off to distinguish between the LRG and the others was > 23 (SS 0.72, SP 0.82, accuracy 0.76, LR + 4.0), whereas the optimal cut-off to separate the HRG from the others was >30 (SS 0.74, SP 0.87, accuracy 0.84, LR + 5.7).

Conclusion: The RSS is a useful instrument to stratify carers according to their risk of psychiatric morbidity. Copyright © 2006 John Wiley & Sons, Ltd.

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Association between cultural factors and the caregiving burden for Chinese spousal caregivers of frail elderly in Hong Kong

Objectives: The aim of this study was to explore the relationship between cultural factors and the caregiving burden of Chinese spousal caregivers who provided care to their frail partners.

Method: A sample consisting of 102 Chinese caregivers for frail elderly spouses was recruited from home care services across various districts in Hong Kong. Structured interviews were conducted with the participants in their homes, measuring demographics, the functional status of the spouse, the degree of assistance required in daily care, perceived health, the caregiver's orientation to traditional Chinese family values, social support, coping, and caregiver burden.

Results: Findings of regression analysis indicated that gender, activities of daily living (ADL) status, orientation to traditional Chinese family values, passive coping, and marital satisfaction associated with caregiver burden. Being female, having lower functioning in ADL or a strong orientation toward traditional Chinese family values, employing the strategies of passive coping more frequent, or experiencing a low degree of marital satisfaction were associated with high levels of caregiver burden.

Conclusion: These findings provided a basis for developing appropriate interventions to minimize the caregiver burden of spousal family caregivers.

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The impact of TCARE® on service recommendation, use, and caregiver well-being

Purpose of the Study: Findings are reported from a study that examined the effects of the Tailored Caregiver Assessment and Referral (TCARE®) protocol, a care management process designed to help family caregivers, on care planning and caregiver outcomes. Design and Methods: A longitudinal, randomized controlled trial was conducted with 97 caregivers enrolled in a demonstration project in Georgia. Data included on care plans pertaining to service recommendations, compliance, and use were reviewed. Caregiver identity discrepancy, objective burden, relationship burden, stress burden, and depressive symptoms were assessed up to 4 times during a 9-month observation period. Chi-square tests, independent samples t tests, random effects regression growth curve analysis, and random intercept regression analysis were conducted. Results: A greater variety of services were recommended to and used by caregivers in the intervention group than in the control group. Caregivers in the intervention group had lower caregiver identity discrepancy, stress burden, and depressive symptoms over time than caregivers in the control group. Implications: Study findings provide initial support for the merits of the TCARE® protocol as a process that can be used to effectively target services to individual caregivers’ needs.

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Perceptions of psychosis, coping, appraisals, and psychological distress in the relatives of patients with schizophrenia: an exploration using self-regulation theory

OBJECTIVE: Following Leventhal's self-regulation model, the purpose of the present study was to provide an examination of the relationship between psychosis perceptions, coping strategies, appraisals, and distress in the relatives of patients with schizophrenia.

DESIGN: Cross-sectional study. METHOD: Participants were 42 relatives of patients with schizophrenia who completed the Hospital Anxiety and Depression Scale (HADS), a brief coping strategies measure (COPE), the Revised Illness Perception Questionnaire (IPQR), and a measure of primary and secondary appraisals (Family Questionnaire).

RESULTS: In general, carers who viewed their relative's psychosis as chronic, who had a stronger illness identity (experience of symptoms), who held a stronger belief in the severity of its consequences, and who reported weaker beliefs in treatment control but stronger beliefs that their relative could exert control over their condition had higher distress scores. Coping through seeking emotional support, the use of religion/spirituality, active coping, acceptance, and positive reframing were associated with less distress, while coping through self-blame was associated with higher distress scores. Hierarchical regression demonstrated that illness perceptions and coping (acceptance, positive reframing, and self-blame), respectively, made significant additional contributions to the variance in distress when entered after demographics, and primary and secondary appraisals. Furthermore, a mediational analysis suggested that coping strategies characterized by greater positive reframing, less self-blame, and greater acceptance mediated the relationship between distress, and both illness identity and carer's beliefs about how much personal control the patient could exercise over their condition. There was no mediational effect of coping on the relationship between distress and carers' perceptions about symptom control through medical treatment.

CONCLUSION: Results provide partial but not unequivocal support for the self-regulation model in the current sample. Findings may invite us to consider the further use of the self-regulation/common sense model as a framework for understanding distress in the carers of people with a diagnosis of schizophrenia.

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Home support workers perceptions of family members of their older clients : a qualitative study

Background: Health care discourse is replete with references to building partnerships between formal and informal care systems of support, particularly in community and home based health care. Little work has been done to examine the relationship between home health care workers and family caregivers of older clients. The purpose of this study is to examine home support workers’ (HSWs) perceptions of their interactions with their clients’ family members. The goal of this research is to improve client care and better connect formal and informal care systems.

Methods: A qualitative study, using in-depth interviews was conducted with 118 home support workers in British Columbia, Canada. Framework analysis was used and a number of strategies were employed to ensure rigor including: memo writing and analysis meetings. Interviews were transcribed verbatim and sent to a professional transcription agency. Nvivo 10 software was used to manage the data.

Results: Interactions between HSWs and family members are characterized in terms both of complementary labour (family members providing informational and instrumental support to HSWs), and disrupted labour (family members creating emotion work and additional instrumental work for HSWs). Two factors, the care plan and empathic awareness, further impact the relationship between HSWs and family caregivers.

Conclusions: HSWs and family members work to support one another instrumentally and emotionally through interdependent interactions and empathic awareness. Organizational Care Plans that are too rigid or limited in their scope are key factors constraining interactions.

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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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Considerations in developing and delivering a non-pharmacological intervention for symptom management in lung cancer: the views of health care professionals

Background: A respiratory distress symptom cluster has recently been identified in lung cancer associated with breathlessness, cough and fatigue, and the study reported here is part of a wider body of work being undertaken to develop a novel non-pharmacological intervention (NPI) for the management of this symptom cluster. The current paper reports the views of health care professionals (HCPs) involved with cancer care regarding the most appropriate ways of developing and delivering such a novel intervention.

Methods: Five focus groups, supplemented with additional telephone interviews, were conducted with a range of both community- and acute-based HCPs involved in symptom management for lung cancer patients. Participants included oncologists, palliative care consultants, specialist nurses, occupational therapists and physiotherapists. The focus groups were transcribed verbatim and analysed using NVIVO to support a framework analysis approach.

Results: The current delivery of NPIs was found to be ad hoc and varied between sites both in terms of what was delivered and by which health care professionals. The provision of NPIs within acute medical settings faced common problems concerning staffing time and space, and there was a recognition that the preference of most patients to make as few hospital visits as possible also complicated NPI teaching. Moreover, there may only be a small window of opportunity in which to effectively teach lung cancer patients a novel NPI as the period between diagnosis and the onset of severe symptoms is often short.

Discussion: The participants agreed that the novel symptom management NPI should be individually personalised to the needs of each patient and be available for patients when they become receptive to it. Moreover, they agreed that the intervention would be most effective if delivered to patients individually rather than in groups, outside acute medical settings where possible and closer to patient’s homes, should be delivered by an HCP rather than a trained volunteer or lay person and should involve informal carers wherever practicable.

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The relation of entrapment, shame and guilt to depression, in carers of people with dementia

There is increasing research exploring depression in carers of people with dementia. This study explored the relation of entrapment, shame and guilt to depression in a group of 70 carers of those with dementia. As in other studies the experience of entrapment in the role was highly related to depression. Moreover, experiences of shame relating to self-criticism, other people's expectations and the fear of their criticism were significantly related to depression, entrapment and guilt. Guilt however, as focused on the fears of harming others, letting others down and sense of responsibility, was not associated with depression or entrapment. Depression in carers may relate in part to feeling trapped in a role but also being vulnerable to criticism and feelings of inadequacy in that role. In this study, degree of behavioural disturbance/dependence was not found to be significantly associated with any of the research variables.

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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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The effect of caregiving on women in families with Duchenne/Becker muscular dystrophy

Duchenne/Becker muscular dystrophy (DBMD) is a disorder of progressive muscle weakness that causes an increasing need for assistance with activities of daily living. Our objective was to assess the psychosocial health and contributing factors among female caregivers in families with DBMD. We conducted a survey of adult women among families with DBMD in the United States (US) from June 2006 through January 2007, collecting data related to the care recipient, perception of caregiving demands, personal factors, and socio-ecologic factors. Life satisfaction, stress, and distress were assessed as outcomes. Existing validated instruments were used when available. We received responses from 1238 women who were caring for someone with DBMD, 24.2% of whom were caring for two or more people with DBMD. Caregivers were more likely to be married/cohabitating than women in the general US population, and a high level of resiliency was reported by 89.3% of caregivers. However, the rate of serious psychological distress was significantly higher among caregivers than among the general population. Likewise, 46.4% reported a high level of stress, and only 61.7% reported that they were satisfied with their life. A high level of caregiving demands based on the Zarit Burden Interview (ZBI) was reported by 50.4% of caregivers. The post-ambulatory phase of DBMD was associated with decreased social support and increased ZBI scores. In multivariate logistic regression modelling, life satisfaction was dependent on high social support, high resiliency, high income, and form of DBMD. Distress and high stress were predicted by low resiliency, low social support, and low income. Employment outside of the home was also a predictor of high stress. Interventions focused on resiliency and social support are likely to improve the quality of life of DBMD caregivers, and perhaps caregivers of children with other disabilities or special health care needs as well.

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Carer burden in dementia

For the carer, supporting a person suffering from dementia of an aetiology is stressful. This review summarises some of the factors associated with stress and some of the interventions aimed at alleviating distress.

Caregiver strain and factors associated with caregiver self-efficacy and quality of life in a community cohort with multiple sclerosis

Purpose. To describe the level of caregiver strain and factors associated with caregiver self-efficacy and quality of life (QoL) in a community cohort with multiple sclerosis (MS).

Method. A cross-sectional survey of 62 informal caregivers and 101 participants with confirmed MS and quantified physical and cognitive disability recruited from a tertiary hospital MS database. Structured interviews conducted at home using standardized assessments to measure: (i) Caregiver strain and subjective burden of care; (ii) participant with MS and caregiver QoL and self-efficacy; and (iii) participant with MS level of depression, anxiety and stress.

Results. The mean caregiver age was 54 years (range 37 – 62). The mean caregiver strain score was 5.63 (SD 3.63). Twenty-six of 62 (42%) caregivers reported strain for items such as emotional adjustments, demands on time, change in personal plan and disrupted sleep. Caregiver burden was higher in those caring for the more severely affected persons with MS, especially those with higher depression, anxiety and stress levels. The caregiver strain correlated with a lower QoL in both the person with MS and their caregiver, but not with their self-efficacy scores.

Conclusion. Caregivers of persons with MS reporting high levels of caregiver strain experienced a lower QoL and were caring for persons with MS with a lower QoL and higher levels of depression and anxiety. Interventions to reduce caregiver strain and burden in those at risk are necessary to reduce poor outcomes among both caregivers and care recipients with MS.

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The nature and scope of stressful spousal caregiving relationships

The caregiving literature provides compelling evidence that caregiving burden and depressive symptoms are linked with stressful care relationships, however, relational difficulties around caregiving are seldom described in the literature. This article presents findings from content analysis of baseline interviews with 40 Alzheimer’s disease (AD) and Parkinson’s disease (PD) spousal caregivers enrolled in a home care skill-training trial who identified their care relationship as a source of care burden. Disappointment and sadness about the loss of the relationship; tension within the relationship; and care decision conflicts within the relationship were recurrent themes of relational stress in caregiving. These spousal caregivers had relationship quality scores below the mean and burden and depressive symptom scores above the means of other caregivers in the study. These findings provide support for developing dyadic interventions that help spouses manage relational losses, care-related tensions, and care decision-making conflicts.

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An evaluation of the needs and service usage of family carers of people with dementia

This study investigated, by way of interview (n=45), the needs of those caring for a person with dementia and their satisfaction with current services in the Caerphilly County Borough of South Wales. Carers reported having the most difficulty coping with the demands on their time and the emotional strain associated with caring. Carers requested more information regarding available services, the diagnosis of dementia and the legal and financial aspects of caring. They also mentioned the need for a night‐sitter service, a 24‐hour helpline, more support groups and more visits from social workers and community psychiatric nurses (CPNs). On the whole, the carers were satisfied with the services provided, although their use of these services was not extensive. However, issues around lack of support, quality and availability of homes and hospitals and poor communications were identified as areas of concern. The findings were welcomed by strategic planners and the information is being used as a basis for developing and improving specific carer support services.

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What do carers of people with psychosis need from mental health services? Exploring the views of carers, service users and professionals

The literature on carer burden, needs and interventions developed to address care needs of those caring for people with psychosis are reviewed. The findings of a study which explored the views and experiences of carers, service users and professionals with regard to what carers of people with psychosis need from mental health services are then reported.

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Nothing on the Move or Just Going Private? Understanding the Freeze on Child- and Eldercare Policies and the Development of Care Markets in Italy

Since the 1990s European conservative-corporatist welfare states have expanded public support for child-and eldercare needs. This is in marked contrast to Southern European countries, of which Italy is a paradigmatic example. In Italy, the traditional configuration (limited development of social services coupled with the importance of informal care, mainly provided by women) has recently come under strain, also because of the increasing employment of women. Nonetheless, rather than the development of new policies, this has given rise to a hybrid combination of informal care and the development of a loosely regulated and little supported care market. In this sense, the article asks why care in Italy has been "going private" instead of "going public". It is argued that cultural features and political ideology do not provide a sufficient explanation: in addition to sharp financial constraints, the structure and functioning of the state and labor market and migration regulation need to be considered.

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Out-of-hours palliative care: a qualitative study of cancer patients, carers and professionals

Background: New out-of-hours healthcare services in the UK are intended to offer simple, convenient access and effective triage. They may be unsatisfactory for patients with complex needs, where continuity of care is important.

Aim: To explore the experiences and perceptions of out-of-hours care of patients with advanced cancer, and with their informal and professional carers.

Design of study: Qualitative, community-based study using in-depth interviews, focus groups and telephone interviews.

Setting: Urban, semi-urban and rural communities in three areas of Scotland.

Method: Interviews with 36 patients with advanced cancer who had recently used out-of-hours services, and/or their carers, with eight focus groups with patients and carers and 50 telephone interviews with the patient's GP and other key professionals.

Results: Patients and carers had difficulty deciding whether to call out-of-hours services, due to anxiety about the legitimacy of need, reluctance to bother the doctor, and perceptions of triage as blocking access to care and out-of-hours care as impersonal. Positive experiences related to effective planning, particularly transfer of information, and empathic responses from staff. Professionals expressed concern about delivering good palliative care within the constraints of a generic acute service, and problems accessing other health and social care services.

Conclusions: Service configuration and access to care is based predominantly on acute illness situations and biomedical criteria. These do not take account of the complex needs associated with palliative and end-of-life care. Specific arrangements are needed to ensure that appropriately resourced and integrated out-of-hours care is made accessible to such patient groups.

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Managing carer stress: an evaluation of a stress management programme for carers of people with dementia

Examines the effect of carer stress management using the Carers' Checklist (Hodgson et al 1998) as a measure of outcome. Pre-course and post-course questionnaires were used with carers, who agreed to attend a structured stress management course. The carers who attended demonstrated a better awareness and understanding of stress and its management following the course. Positive measures of outcome were also determined by a decrease in the carers' rating in frequency of dementia-related problems, carer burden of dementia-related problems and overall carer burden. The findings confirm that structured stress management can reduce carer burden and offer better coping strategies through raising carers' awareness and understanding.

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Supporting families and carers of drug users: a review; summary

This research summary provides an overview of the findings from a review of the literature on the needs of, and services for, families of drug users. A literature search and review was conducted using standard bibliographic search procedures in order to: establish what is known about the support needs of families of drug users; establish what is known about effective ways of addressing those needs; examine whether, and how, family support groups/ services link with other services; examine whether involving families within the treatment or service offered to the drug user has beneficial effects upon the family and the drug user.

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Caring for a person in advanced illness and suffering from breathlessness at home: threats and resources

Little is known about the factors that mediate the caregiving experience of informal carers at home, which could inform about ways of supporting them in their caregiving role. Our objective was to investigate the caring experience of carers for patients with an advanced progressive illness (chronic obstructive pulmonary disease [COPD], heart failure, cancer, or motor neuron diseases [MND]), who suffer from breathlessness.

A purposive sample of 15 carers was selected. They were recruited via the patients they cared for (who suffered from COPD, cancer, MND, or heart failure) from the hospital and the community. Data were collected through semistructured, in-depth interviews. All were tape-recorded and transcribed verbatim. The analysis used a Grounded Theory approach and NVivo software facilitated the management and analysis of the data.

Several key issues affected caring in a positive or a negative way. The threats to caring were uncertainty, carers' own health problems, an imploded world, negative reactions from outside, person loss, and acute exacerbations. Resources that carers drew on were acceptance, self-care, availability of support, feeling that caring is a shared responsibility with the patient, and “getting on with” caring in case of emergencies. Breathlessness was particularly challenging, and carers did not have any strategies to relieve the symptom. They were ill prepared for acute exacerbations.

Carers need to be included in opportunities for support provision in advanced illness. Negotiated involvement of a health professional could buffer the heavy responsibilities related to home care. They could provide problem-solving skills and build on the resources that carers draw on in response to what they experience as most threatening to their caring role.

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Stressors and common mental disorder in informal carers – An analysis of the English Adult Psychiatric Morbidity Survey 2007

This study investigates potential explanations of the association between caring and common mental disorder, using the English Adult Psychiatric Morbidity Survey 2007. We examined whether carers are more exposed to other stressors additional to caring – such as domestic violence and debt – and if so whether this explains their elevated rates of mental disorder. We analysed differences between carers and non-carers in common mental disorders (CMD), suicidal thoughts, suicidal attempts, recent stressors, social support, and social participation. We used multivariate models to investigate whether differences between carers and non-carers in identifiable stressors and supports explained the association between caring and CMD, as measured by the revised Clinical Interview Schedule.

The prevalence of CMD (OR = 1.64 95% CI 1.37–1.97), suicidal thoughts in the last week (OR = 2.71 95% CI 1.31–5.62) and fatigue (OR = 1.33 95% CI 1.14–1.54) was increased in carers. However, caring remained independently associated with CMD (OR = 1.58 1.30–1.91) after adjustment for other stressors and social support. Thus caring itself is associated with increased risk of CMD that is not explained by other identified social stressors. Carers should be recognized as being at increased risk of CMD independent of the other life stressors they have to deal with. Interventions aimed at a direct reduction of the stressfulness of caring are indicated. However, carers also reported higher rates of debt problems and domestic violence and perceived social support was slightly lower in carers than in non-carers. So carers are also more likely to experience stressors other than caring and it is likely that they will need support not only aimed at their caring role, but also at other aspects of their lives.

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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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Carer distress: a prospective, population-based study

This study investigates whether transitions into and out of unpaid caregiving are associated with increased risk for onset of or delayed recovery from psychological distress, and traces the prevalence of distress across successive years of caring activity and after caregiving has ceased. The analysis is based on data from the British Household Panel Survey covering 3000 would-be carers, 2900 former carers, and 11,100 non-carers during the 1990s; their psychological well-being was assessed at annual intervals using the General Health Questionnaire. Carers providing long hours of care over extended spells present raised levels of distress, women more so than men. Compared with non-carers, risk for onset of distress increases progressively with the amount of time devoted to caregiving each week. Adverse effects on the psychological well-being of heavily involved carers are most pronounced around the start of their care episodes and when caregiving ends. Ongoing care increases their susceptibility to recurring distress, and adverse health effects are evident beyond the end of their caregiving episodes. Several groups of carers experience psychological health inequalities compared with non-carers, especially those looking after a spouse or partner, and mothers caring for a sick or disabled child. The findings underline the importance for effective carer support and health promotion of early identification of carers, monitoring high risk groups, timing appropriate interventions, and targeting resources.

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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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Caring for people with eating disorders: factors associated with psychological distress and negative caregiving appraisals in carers of people with eating disorders

OBJECTIVES: Carers of people with eating disorders (ED) have high levels of distress, but little is known about the contributing factors. The aim of this study was to examine predictors of carers' distress and caregiving appraisals using a model of caregiving adapted from the previous literature.

DESIGN: A cross-sectional design was used.

METHODS: A sample of 115 individuals currently caring for someone with an ED participated in the study. Carers completed self-report assessments of psychological distress (GHQ-12; Goldberg & Williams, 1988), experience of caregiving (Szmukler et al., 1996), illness representations (IPQ-SCV; Barrowclough, Lobban, Hatton, & Quinn, 2001) and caregiving needs (CaNAM; Haigh & Treasure, 2003). Simple and multiple hierarchical regressions were conducted.

RESULTS: Approximately 36% (39/109) of carers had scores on the GHQ which indicated mental health difficulties, with 17% (19/109) experiencing high psychological distress. A negative experience of caregiving was associated with carers' distress. The dependency of the individual with the ED and stigma associated with the illness were most highly predictive of carers' distress. Shorter illness duration, higher levels of needs (lower levels of support) and perceptions of high illness consequences contributed to greater negative caregiving appraisals. The belief that the illness was attributable to the sufferers' personality was related to fewer positive appraisals.

CONCLUSIONS: Adjusting to the impact of a family member experiencing an ED is problematic, as suggested by the relationship between shorter illness duration and greater negative appraisals of caregiving. Interventions to help reduce dependency and alleviate stigma may help to decrease carers' distress.

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Does physical activity reduce burden in carers of people with dementia? A literature review

Objectives: Physical exercise has been associated with a range of positive outcomes including improvements in psychological well-being. The aim of the present study was to review current evidence on the effects of physical activity interventions for carers of people with dementia.

Methods: Systematic review. We searched electronic databases and key articles of studies that have evaluated the effectiveness of physical activity interventions in improving psychological well-being in carers of people with dementia. Relevant papers were scored according to established criteria set by the Cochrane Review Group. Selection criteria for studies were a randomized controlled trial (RCT) design, and comparing physical activity with a control group receiving no specific physical activity intervention. Two reviewers worked independently to select trials, extract data, and assess risk of bias.

Results: A total of four RCTs met the inclusion criteria. Studies evaluated home-based supervised physical activity of low to moderate intensity, which included either aerobic exercise, or endurance training. Pooled data showed that physical activity reduced subjective caregiver burden in carers, standardized mean difference −0.43; 95% confidence interval (CI) −0.81 to −0.04, in comparison to a control group of usual care.

Conclusions: There is evidence from two RCTs that physical activity reduces subjective caregiver burden for carers of people with dementia. Although statistically significant, the observed benefits should be interpreted with caution as the studies conducted so far have limitations. Further high-quality trials are needed for evaluating the effectiveness of physical activity in improving psychological well-being in carers of people with dementia. Copyright © 2014 John Wiley & Sons, Ltd.

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Bringing Young Carers Out of the Shadows

The article discusses the difficulties experienced by young carers and how to develop and strengthen their caregiver skills and experience. It says that young carers are children, adolescents, and younger members of the family below the age of 25 who has become the primary caregiver of the family and takes adult responsibilities in managing the family due to parental absence. It says that due to their young age, most young carers experience psychological and physical stress in their lives, social isolation from their peers, and educational delays. However, many young carers also see positive outcomes of their role like heightened sense of self-worth, satisfaction from caregiving tasks, and belief that they are more mature.

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Improving caregiving competence, stress coping, and mental well-being in informal dementia carers

AIM: To study the effectiveness of Reitman Centre “Coaching, Advocacy, Respite, Education, Relationship, and Simulation” (CARERS) program, which uses problem-solving techniques and simulation to train informal dementia carers.

METHODS: Seventy-three carers for family members with dementia were included in the pilot study. Pre- and post-intervention data were collected from carers using validated measures of depression, mastery, role captivity and overload, caregiving competence and burden, and coping styles. To assess program effectiveness, mean differences for these measures were calculated. One-way ANOVA was used to determine if change in scores is dependent on the respective baseline scores. Clinical effects for measures were expressed as Cohen’s D values.

RESULTS: Data from 73 carers were analyzed. The majority of these participants were female (79.5%). A total of 69.9% were spouses and 30.1% were children of the care recipient. Participants had an overall mean age of 68.34 ± 12.01 years. About 31.5% of participating carers had a past history of psychiatric illness (e.g., depression), and 34.2% sustained strained relationships with their respective care recipients. Results from carers demonstrated improvement in carers’ self-perception of competence (1.26 ± 1.92, P < 0.0001), and significant reduction in emotion-focused coping (measured by the Coping Inventory of Stressful Situations, -2.37 ± 6.73, P < 0.01), Geriatric Depression scale (-0.67 ± 2.63, P < 0.05) and Pearlin’s overload scale (-0.55 ± 2.07, P < 0.05), upon completion of the Program. Secondly, it was found that carers with more compromised baseline scores benefited most from the intervention, as they experienced statistically significant improvement in the following constructs: competence, stress-coping style (less emotion-oriented), sense of mastery, burden, overload.

CONCLUSION: Study results supported the effectiveness of the CARERS Program in improving caregiving competence, stress coping ability and mental well-being in carers caring for family members with dementia.

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The spiritual gifts and burdens of family caregiving

This article acknowledges the gifts of caregiving and recognises the special spiritual burden that may accompany, and at times even displace, those rewards.  Counselors and others can offer the types of spiritual support that caregivers require as they struggle with the daily difficulties of caregiving and the spiritual issues that caregiving raises.

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Quality of relationships between care recipients and their primary caregivers and its effect on caregivers' burden and satisfaction in Israel

Research on the impact of quality of relationships between primary caregivers and their care recipients on burden and satisfaction with caregiving is still rare. The sample included 335 dyads of primary caregivers and care recipients who were cognitively intact. Face-to-face interviews were conducted at the respondents' homes using structured questionnaires. No significant correlation between caregiving burden and caregiving satisfaction was found. Quality of relationship was the most significant variable in explaining both caregiving burden and caregiving satisfaction, yet different sets of additional variables were found to explain each of the outcomes. Interventions should address quality of relationships in order to reduce burden and increase caregiving satisfaction.

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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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Drawing the line: the boundaries of volunteering in the community care of older people

Volunteers can play important roles in the provision of support and care to frail or confused older people living in their own homes. There are conflicting expectations as to what these roles should be since there are unclear boundaries with those of paid care and with informal care. The present article explores some of these boundaries, drawing on material from a study of 14 volunteer schemes in England. The aim of the research was to explore the roles played by volunteers in the overall care division of labour. The main method used was that of semistructured interviews with organizers and volunteer coordinators of the schemes involved. The findings presented here relate to the limitations on the type of cases taken on, and to the boundaries with professional care, paid manual work and informal care. It concludes that the ways in which these boundaries are established and maintained depends not only on legal and policy constraints at the level of the state, but also on negotiation between organizations and individuals at a local level. The issues raised are of importance not only to research in the area, but to anyone planning similar schemes in the future.

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Perceptions of Giving Support and Depressive Symptoms in Late Life

Purpose of the Study: Research shows that parents benefit psychologically from generativity—giving and caring for the next generation—but older adults’ perceptions on giving support to their children are rarely if ever explored in these studies. The current study examines the association between the support that aging parents give to one of their middle-aged offspring, their perception of this support as rewarding or stressful, and their levels of depressive symptoms.

Design and Methods: The sample draws from The Family Exchanges Study and consisted of 337 older parents (mean age: 76) who were drawn from a larger study of middle-aged adults (i.e., target participants). Older parents reported tangible and nontangible forms of support given to the target middle-aged child and the extent to which they viewed providing such support as stressful and/or rewarding.

Results: We found significant interactions between tangible support and feelings of reward and between nontangible support and feelings of stress in explaining parental depressive symptoms. Parents who found giving support to be highly rewarding had lower levels of depressive symptoms when giving high amounts of tangible support. Conversely, parents who view giving support to be highly stressful had higher levels of depressive symptoms when they gave low amounts of nontangible support.

Implications: Findings suggest older parents’ perceptions of supporting their offspring may condition how generativity affects their mental health.

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Negotiating lay and professional roles in the care of children with complex health care needs

BACKGROUND: Children with complex health care needs are now being cared for at home as a result of medical advances and government policies emphasizing community-based care. The parents of these children are involved in providing care of a highly technical and intensive nature that in the past would have been the domain of professionals (particularly nurses).

AIMS OF THE PAPER: To assess how the transfer of responsibility from professionals to parents was negotiated, the tensions and contradictions that can ensue, and the implications for professional nursing roles and relationships with parents.

DESIGN: Using a Grounded Theory methodology, in-depth interviews were conducted with 23 mothers, 10 fathers and 44 professionals to gain insight into the experience of caring for children and supporting families in the community.

FINDINGS: From the parents' perspective, their initial assumption of responsibility for the care of their child was not subject to negotiation with professionals. Prior to discharge, parents' feelings of obligations, their strong desire for their child to come home, and the absence of alternatives to parental care in the community, were the key motivating factors in their acceptance of responsibility for care-giving from professionals. The professionals participating in the study had concerns over whether this group of parents was given a choice in accepting responsibility and the degree of choice they could exercise in the face of professional power. However, it was following the initial discharge, as parents gained experience in caring for their child and in interacting with professionals, that role negotiation appeared to occur.

CONCLUSION: This study supports other research that has found that professionals' expectations of parental involvement in the care of sick children role can act as a barrier to negotiation of roles. In this study, parental choice was also constrained initially by parents' feelings of obligation and by the lack of community services. Nurses are ideally placed to play the central role not only in ensuring that role negotiation and discussion actually occurs in practice, but also by asserting the need for appropriate community support services for families. Being on home territory, and in possession of expertise in care-giving and in managing encounters with professionals, provided parents with a sense of control with which to enter negotiations with professionals. It is important that changes in the balance of power does not lead to the development of parent-professional relationships that are characterized by conflict rather than partnership.

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Caring for a relative with chronic fatigue syndrome : difficulties, cogntion and acceptance over time

The present study explored the difficulties experienced by carers of chronic fatigue syndrome (CFS) sufferers, their cognitions, and their efforts to accept the illness. Semi-structured interviews were conducted with 17 carers to study these issues, retrospectively, over three stages: before the diagnosis of CFS, shortly after the diagnosis, and at present. Surprisingly, the results suggested that carers, several of them absent from home during the day, felt that their lives were only minimally constrained by the illness. Nevertheless, all carers reported specific coping efforts to manage both the illness and their own distress, and indicated that they learned to accept the illness over time. However, acceptance appeared to be a form of resignation rather than a positive appreciation of the illness. In light of the uncertainties surrounding the origin of CFS and carers’ apparent confusion, the results obtained in the present study are significant in that they increase our understanding of CFS carers’ quality of life, their efforts to cope with the illness, and the physical and emotional help they may provide to the sufferer. Such information can be usefully employed in the increasing development of counselling interventions and instrumental support networks that involve both sufferers and their carers.

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Giving voice to informal caregivers of older adults

This study focused on the experiences of informal caregivers of older adults and explored whether employment, use of home-care services, or other factors influence the health of caregivers and their ability to manage their caregiving and other responsibilities. Focus groups conducted with 26 caregivers and personal interviews with 4 caregivers identified 12 themes under 5 conceptual areas: caregiver health, relationships, independence, employment, and use of home-care services. The findings reveal that caregiving coupled with other responsibilities can have serious health effects. Participants spoke of the tenuous balance of decision-making control between caregiver and care recipient. Many caregivers expressed a desire to be included as part of the formal health-care team. Implications for nursing are discussed.

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Reducing caregiver stress with internet-based interventions: a systematic review of open-label and randomized controlled trials

Objective The high level of stress associated with caring for others with medical conditions has been recognized for some time. Reducing caregiver stress can improve caregiver quality of life as well as improve the care they provide to loved ones. This systematic review assesses the effectiveness of internet-based interventions to decrease caregiver stress.

Materials and methods A comprehensive literature search of Ovid MEDLINE (1946–2013), Embase (1988–2013), PsycINFO (1987–2013), and CINAHL was conducted using terms related to caregiver and internet-based interventions. Internet-based interventions involving informal caregivers in an open-label or randomized controlled trial setting were included. A pair of raters independently reviewed all published abstracts. Data regarding participants, interventions, and outcomes were extracted and, for randomized trials, methodology quality was also reviewed.

Results Eight open-label trials met the review criteria: three showed positive benefit in reducing caregiver stress, four were partially positive (some outcomes positive, others negative), and one was a negative study. Sixteen randomized trials met the review criteria: six showed positive benefit, five were partially positive, and five were negative. There were no clear patterns as to the variables (such as study duration and complexity of intervention) associated with better outcomes, although earlier studies typically had more negative outcomes.

Discussion Internet-based interventions were mostly effective in reducing aspects of caregiver stress and improving their well-being. Further studies to assess outcomes for caregivers and their recipients’ health, different technology delivery methods, and the cost of such interventions are needed.

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Awareness of carer distress in people with dementia

Objectives: People caring for family members who have dementia often experience considerable levels of anxiety and depression. However, relatively little is known about the awareness of carer distress among people with dementia. This study investigated whether or not people with dementia are aware of the level of distress experienced by their carers.

Method: Two groups of participants were studied, a dementia group and a control group of people with arthritis. Each group consisted of pairs of people, the person with dementia or arthritis and the family member who acted as their main carer; 40 pairs participated in total. For both groups, the carer's psychological health was rated by the carer themselves and by the care-recipient, using the Hospital Anxiety and Depression Scale. For the dementia group, memory functioning in the person with dementia was rated by the care-recipient themselves and by the carer, using the Memory Function Scale. The ratings made by the carer and care-recipient were compared to give an indication of the level of awareness in the care-recipient.

Results: People with dementia have a significant level of awareness of their carers' state of psychological health. Their awareness follows the same pattern as that shown by a control group of people with arthritis. The level of awareness of carer psychological health shown by the dementia group was not related to their level of awareness of their own memory difficulties.

Conclusion: The clinical implications of awareness of carer distress in people with dementia should be considered. Copyright © 2009 John Wiley & Sons, Ltd.

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The nutrition-related needs of family caregivers

Models depicting the strain and burden that caregivers experience are well known. But none of the models include nutrition, despite its importance to health. About 20 percent of caregivers report changes of appetite and weight. In this article, the author explores nutritional status and its relationship to the experience of caregivers—and their care recipients.

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Global Perspective on Children's Unpaid Caregiving in the Family

This article provides the first cross-national review and synthesis of available statistical and research evidence from three developed countries, the UK, Australia and the USA, and from sub-Saharan Africa, on children who provide substantial, regular or significant unpaid care to other family members (‘young carers/caregivers’). It uses the issue of young carers as a window on the formulation and delivery of social policy in a global context. The article examines the extent of children’s informal caregiving in each country; how young carers differ from other children; and how children’s caring has been explained in research from both developed and developing countries. The article includes a review of the research, social policy and service developments for young carers in each country. National levels of awareness and policy response are characterized as ‘advanced’, ‘intermediate’, ‘preliminary’ or ‘emerging’. Explanations are provided for variations in national policy and practice drawing on themes from the globalization literature. Global opportunities and constraints to progress, particularly in Africa, are identified. The article suggests that children’s informal caring roles in both developed and developing nations can be located along a ‘caregiving continuum’ and that young carers, globally, have much in common irrespective of where they live or how developed are their national welfare systems. There is a need in all countries for young carers to be recognized, identified, analysed and supported as a distinct group of ‘vulnerable children’.

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Coping strategies of families in HIV/AIDS care: some exploratory data from two developmental contexts

Caring for a family member with HIV/AIDS presents multiple challenges that strain a family's physical, economic and emotional resources. Family carers provide physical care and financial support and deal with changes in family relationships and roles, often with little support from outside of the family. Carers in developing countries face even greater challenges, due to lack of medical and support services, poverty and widespread discrimination against those with HIV/AIDS. Little is known about how family carers cope with these challenges or about the ways that development impacts on the process of coping. The current study explored coping strategies used by family carers in two contexts, Kerala, India and Scotland, UK. As part of a larger study, 28 family carers of persons living with HIV/AIDS were interviewed −23 in Kerala and 5 in Scotland. A modified version of the Ways of Coping scale was used to assess coping strategies. Responses were compared on the total number of coping responses used as well as on selected subscales of the WOC. Differences were assessed using the Mann-Whitney U-test. The two cohorts differed significantly in terms of the coping strategies used. The carers from Scotland used a larger number of different coping strategies and scored higher on measures of problem focused coping, positive reappraisal, seeking social support, self-controlling and distancing/detachment. Respondents from Kerala scored higher on a measure of self-blame. Results are discussed in terms of the impact of community resources on coping strategies.

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Caring-related inequalities in psychological distress in Britain during the 1990s

Background This paper examines recent trends in inequalities in psychological distress associated with the provision of unpaid care by those who look after frail older people and younger disabled adults and children. Caring activities intensified during the 1990s, associated with increasing amounts of time devoted to the more demanding types of care and to those relationships that typically make heavy demands on the carer. Heavy involvement in caregiving is often associated with symptoms of anxiety and distress, and the intensification of care may increase rates of distress in carers relative to that in non-carers.

Methods A secondary analysis was carried out of data drawn from the first 10 waves of the British Household Panel Survey covering 1991–2000, based on around 9000 adults interviewed personally in successive waves. Symptoms of psychological distress, including anxiety and depression, were assessed using the 12-item General Health Questionnaire.

Results Carers present higher rates of distress than noncarers and the health gap widens as the definition of caregiving focuses on those living with the person they care for, and those devoting 20 h or more per week to their caring activities. Differences in distress rates between carers and non-carers are greater for women than for men. There is no support for the hypothesis that inequalities in distress associated with caregiving have increased over time.

Conclusion There was no change during the 1990s in the extent of inequalities in psychological distress associated with caregiving in Britain. The need to maintain carers' emotional and mental health is as compelling as ever it was.

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Caring as worrying: the experience of spousal carers

Background.  With the emerging focus on home-based care, there is an increasing demand on spouses to look after their chronically ill partners at home. The theoretical aspects of caring have been much discussed in the literature, but the pragmatic aspects have received less attention. Carer stress has been explored, but little has been written about the meaning of caring to informal carers.

Aim.  The aim of this paper is to report one of the major themes that emerged from a study conducted between 1998 and 1999 to explicate the meaning of caring from the perspective of spousal carers for people with multiple sclerosis in order to shed light on and understand the challenges and demands these carers encountered.

Methodology.  An interpretive phenomenological approach was used to describe spousal carers’ experiences of caring for their partner. Ten spousal carers of people with multiple sclerosis participated. Data were collected through unstructured in-depth interviews and analysed by the method of hermeneutic analysis.

Findings.  This paper presents one of the major themes identified: ‘caring as worrying’. While the meaning of caring that emerged from this theme supports many of the philosophical understandings of caring as discussed in the literature, worrying as a care responsibility provides a further insight. Caring as worrying describes caring as a complex emotional relationship of responsibility in these participants. They worried about their partners, their relationships with their partners and their future. They also worried about their own health, institutional care, and lack of government support.

Conclusion.  Spousal carers’ worries have significant implications for health care professionals. The findings provide insight into the concerns and worries the carers of people with multiple sclerosis face when caring for their chronically ill partners at home.

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Unintended consequences: caregivers may be a barrier to the aging becoming tech savvy

"Caregivers are so overwhelmed by the demands of managing basic needs that they tend to only think of technology as tools to save time or provide safety," said Bill Novelli, founder of the Global Social Enterprise Initiative and Georgetown McDonough distinguished professor of the practice. "We need to eliminate the disconnect between the caregivers' ability to incorporate enriching technology into their care routines and their role in providing basic care for their loved ones." In addition to time constraints placed on the caregiver, the caregiver's perception of what defines successful aging focuses on the health of the adult for which they are caring. As a result, caregivers are viewing technology for aging well too narrowly and products aimed at caregivers primarily fall into the category of health and safety monitoring - which give caregivers comfort and peace of mind. 

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A question of survival: who cares for carers?

This paper describes a young refugee's experience of unbearable emotional pain, and its impact on the professionals who work with her. It demonstrates the importance of adequate support for professionals working with refugees; and the difficulties for both individuals and organizations in tolerating the limitations of resources.

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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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Active living: what works

Reports on a study which took place at a memory clinic in the south west of England to investigate the reasons why people with dementia and their carers do, and do not, stay physically active. The study also wanted to find out which activities would be acceptable and sustainable for people with dementia and their carers. Five people living with Alzhiemer's Disease and their five spouse carers were interviewed using semi-structured interviews. Barriers and facilitators to physical activity were linked to both the progression of dementia and the relationship between carers and the person with dementia. Other issues identified include time constraints; previous activities undertaken; social acceptance and general attitudes towards dementia. The findings highlight the need to understand the attitudes, routines, previous activities and abilities of people with dementia.

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Adjusting to the caregiving role: the importance of coping and support

Background: Although informal end-of-life care is associated with significant physical and psychological morbidity for caregivers, few interventions have been developed to meet these needs. This study aimed to identify existing coping and support mechanisms among informal cancer caregivers in order to inform intervention development.

Method: One-to-one semi-structured qualitative interviews were undertaken with 20 informal cancer caregivers of home palliative care patients.

Results: Caregivers’ existing coping strategies included distraction, mental stimulation, emotional release, looking for the positive aspects of caregiving, and disengaging from stressful thoughts. The majority of the participants described the importance of support and understanding from family and friends.

Conclusions: The data suggests that feasible and acceptable interventions will be those that are targeted to caregivers to assist them in optimising existing coping strategies and support from family and friends.

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S09-05 Beyond family burden - the complexities of carer roles

In her talk, Sigrid Steffen will speak about the core aims of EUFAMI in respect to family members and carers. Sigrid will base a lot of her talk around her own personal experience as a carer of a son who was diagnosed with schizophrenia, and she will augment this with experiences of other members of EUFAMI from across Europe. She will elaborate on the stresses and strains under which family members (the carers) come under and will discuss the challenges which carers face on a daily basis. Her talk will also include a description of a typical 'journey' which carers and families travel in the execution of their caring role in an attempt to describe the various feelings and pressures they experience. Sigrid will also discuss what she understands to be the critical needs of carers and the level of support required. In particular Sigrid will concentrate on the stigma which families feel and experience during their lifetime, a aspect which is little understood and appreciated by the wider public. In conclusion, Sigrid will detail some of the work which EUFAMI has been and is involved with and which is related to the subject of her talk. 

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Hip fracture patients' cognitive state affects family members' experiences - a diary study of the hip fracture recovery

Background: Many patients with hip fractures suffer from dementia disease, which has shown to affect the outcome of recovery strongly, as well as care and treatment. As most hip fracture patients are discharged home early after surgery, caregiving often falls on family members – spouses, daughters, sons, or even neighbours become informal carers.

Aim: To explore how hip fracture patients’ cognitive state affect family members’ experiences during the recovery period.

Methods: Eleven diaries written by family members’ of hip fracture patients were analysed by means of qualitative content analysis.

Findings: The analysis generated two main categories with four categories. The first main category was; ‘Being a family member of a cognitively impaired patient’ with the categories ‘Dissatisfaction with lack of support’ and ‘Emotional distress due to the patient’s suffering’. The second main category was ‘Being a family member of a cognitively intact patient’ with the categories ‘Satisfaction with a relative’s successful recovery’ and ‘Strain due to their caring responsibilities’. Being a family member of a patient with cognitive impairment and a hip fracture meant being solely responsible for protecting the interests of the patient; in regard to care, rehabilitation and resources. The family members were also burdened with feelings of powerlessness and sadness due to the patients’ suffering. On the contrary, family members of cognitively intact hip fracture patients had positive experiences. The family members expressed pleasure from seeing their close ones make progress. However, when the healing process was delayed this led to strain on the family members.

Conclusions: The findings suggest the hip fracture patient’s cognitive state is more decisive than the hip fracture itself for the family members’ experiences.

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Effectiveness of cognitive-behavioural family intervention in reducing the burden of care in carers of patients with Alzheimer's disease

Background The majority of patients with Alzheimer's disease live outside institutions and there is considerable serious psychological morbidity among their carers.

Aims To evaluate whether family intervention reduces the subjective burden of care in carers of patients with Alzheimer's disease and produces clinical benefits in the patients.

Method A prospective single-blind randomised controlled trial with three-month follow-up in which the experimental group received family intervention and was compared with two control groups.

Results There were significant reductions in distress and depression in the intervention group compared with control groups at post-treatment and follow-up. There were significant reductions in behavioural disturbance at post-treatment and an increase in activities at three months in patients in the intervention group. Based on an improvement on the General Health Questionnaire resulting in a carer converting from a case to a non-case, the number to treat was three immediately post-treatment and two at follow-up.

Conclusions Family intervention can have significant benefits in carers of patients with Alzheimer's disease and has a positive impact on patient behaviour.

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Young Carers: Mature Before Their Time

The article provides an overview on young carers the services they need within their community. It notes that young carers are individuals under 18 who provide primary care in their families due to parental addiction, disability, illness. Further, it states that parental absence due to divorce, desertion, or overseas military service can also serve as a ground for youth to become young carers. It mentions the negative impact of caregiving among young carers including the loss of childhood through having to provide care for other family members, poor social skills, and stress caused by conflicting needs and situations.

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Cohort study of informal carers of first-time stroke survivors: profile of health and social changes in the first year of caregiving

Informal carers underpin community care policies. An initial cohort of 105 informal live-in carers of new stroke patients from the South Coast of England was followed up before discharge, six weeks after discharge and 15 months after stroke with face-to-face interviews assessing physical and psychological health, and social wellbeing. The carer cohort was compared to a cohort of 50 matched non-carers over the same time period. Carer distress was common (37–54%), started early on in the care-giving experience and continued until 15 months after stroke. Carers were 2.5 times as likely as non-carers to have significant psychological distress. Presence of early distress predicted 90% of those significantly distressed 15 months after stroke. Female carers were likely to develop distress earlier than male carers and in anticipation of the care-giving situation. Male carers developed similar levels of distress but only once the care-giving situation became reality. Further research is needed to establish ways to screen for psychological distress early after onset of caregiving, to find ways to tailor proven support interventions to the individual carer, and to evaluate the effect of early detection and support provision on later carer distress.

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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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Shadow Times: The Temporal and Spatial Frameworks and Experiences of Caring and Working

In this article we explore temporal and spatial frameworks for analysing the experience of combining caring for children with participation in paid work. We highlight the pressure to undertake paid employment routinely, which places particular strains upon people who are most likely to have to combine caring and working. The authors assert that mothers continue to have the main responsibility for the organization, if not the conduct, of caring work (Sevenhuijsen, 1998). Traditional assumptions about the seeming relationship between femininity and caring remain relatively intact, despite major shifts in family formation, women’s participation in the labour market and debates about the changing role of men (Cancian and Oliker, 1999; Lister, 1997). Drawing upon the work of Adam (2000) on timescapes we develop the notion of caringscapes as a means by which the processes of combining caring and working may be theorized and also incorporated into UK government policy related to caring (whether directly or indirectly). We draw attention to the inadequacy of public policy that does not incorporate an awareness of the demands of the everyday across the lifecourse, of which a spatial-temporal component should be fundamental. The authors propose a caringscape perspective as a basis for both future research and policy developments and conclude that an enhanced recognition of the fluidity and praxis of caring and gender is necessary to support the evolving roles of parents, especially mothers who combine caring and working.

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Informal carers and wound management: an integrative literature review

Objective:The consequences of informal care giving have been well documented in recent decades, and in many fields of illness and chronic disease, the role of informal carers has been recognised and investigated. Informal caregivers in the field of wound management and prevention have been largely unnoticed, despite the chronic nature of many wounds, the enduring nature of treatments and the impact on the physical and social environment; factors likely to have a significant impact on family and friends. The aim of this study was to consider what published evidence is available regarding the experience and role of informal caregivers in wound management or prevention.

Method: An integrated literature review was completed in October 2014 searching ESBCOhost database, Wound Management Association websites, and reviewing reference lists of accessed papers.

Results: A number of challenges were noted in accessing information about informal carers in relation to wound management and prevention. Most of these arose from the scarcity of studies for which informal carers was the primary focus. The available evidence suggests that informal carers have a role in wound management and prevention and that their involvement is likely to represent a noteworthy economic contribution to the wound management health-care team. Wound management was also determined to yield physical and psychological impacts for the carer. There was limited evidence of structured information, support or training for informal carers, which was flagged by carers as an area of need.

Conclusion: General conclusions about the burdensome experience and the valuable role of carers were the main interpretations possible from the evidence. More research which purposively and comprehensively examines the experience and role of informal caregivers is required. This knowledge would provide a foundation upon which interventions and support for informal carers and patients can be generated, which could further serve to enhance wound healing and the prevention of skin damage.

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Family caregivers' distress levels related to quality of life, burden, and preparedness

Objective: Family caregivers (FCGs) caring for loved ones with lung cancer are at risk for psychological distress and impaired quality of life (QOL). This study explores the relationship between FCGs' distress, per the distress thermometer (DT) and FCGs' QOL, burden, and preparedness. The purpose is to identify types of problems unique to FCGs in cancer care.

Methods: Family caregivers of patients diagnosed with non-small cell lung cancer were recruited from an adult outpatient setting at a comprehensive cancer center. Questionnaires included demographic information, City of Hope QOL Scale-Family Version, Caregiver Burden Scale, FCG preparedness, and DT. Baseline data were utilized for this analysis.

Results: Of the FCGs (N = 163), 68% were spouses, 64% female, and 34% worked full-time. FCG age ranged from 21 to 88 years with a mean of 57 years. FCGs cared for patients with non-small cell lung cancer stage I–III (44%) and stage IV (56%). Psychological distress (DT mean = 4.40) was moderate. DT scores were highly correlated with seven of the eight explanatory variables. Secondary principal components analysis of the explanatory variables combined correlated variables into three constructs identified as self-care component, FCG role component, and FCG stress component. Simultaneous multiple regression of distress onto the three components showed they accounted for 49% of the variance in distress.

Conclusion: This exploration of FCGs' concerns associated with elevated distress scores, as measured by the DT, helped identify three component problem areas. These areas warrant further psychosocial assessment and intervention to support FCGs as they care for the patient with cancer. Copyright © 2014 John Wiley & Sons, Ltd.

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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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Family carers’ distress and abusive behaviour: longitudinal study

Background A third of family carers of people with dementia report abusive behaviour towards the person for whom they are caring. This is the first longitudinal study to investigate such behaviour. Aims To test our hypotheses that carers’ reports of abusive behaviour would increase over time, and that change in abuse scores would be predicted by change in anxiety and depression scores. Method In total, 131 (71.6%) of the family/friend dementia carers consecutively recruited from new referrals to Essex and London community mental health teams who were interviewed at baseline, completed the revised Modified Conflict Tactics Scale to measure abuse 1 year later.

Results Sixty-three (48.1%) of the carers reported any abusive behaviour at baseline compared with 81 (61.8%) a year later (χ2 = 6.9, P = 0.009). An increase in abuse scores was predicted by an increase in anxiety and depressive symptoms (respectively β = 0.32, t = 3.9, P<0.001 and β = 0.24, t = 2.9, P = 0.005), and by less domiciliary care at baseline (β = –0.18, t = –2.2, P = 0.031).

Conclusions Most abusive behaviour reported by carers at baseline persisted or worsened in the following year, despite contact with specialist services. We suggest that trials of psychological interventions shown to reduce anxiety and depression in the carers of people with dementia are needed to determine whether they also reduce elder abuse, and can be delivered cost-effectively within the National Health Service (NHS).

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Prevalence and predictors of carer burden and depression in carers of patients referred to an old age psychiatric service

Background: Too little is currently known about the prevalence of and risk factors for depression and carer strain among informal carers of community-dwelling elderly mentally ill. This study seeks to assess the prevalence of depression, using the Geriatric Depression Scale-15 (GDS-15), the degree of carer burden/strain, and their risk factors among the primary informal carers of patients referred to our community-based old age psychiatry service.

Methods: A cross-sectional study design was used, with the subjects comprising 100 primary informal carers of patients who live at home and were referred to our service. The main carer measures were the GDS-15 and an adapted version of Gilleard's Strain Scale. Patients were assessed the Clifton Assessment Procedure for the Elderly–Survey version, the GDS-15 and the Mini-mental State Examination.

Results: Depression was found in 21% of the carers (a score of 5 or more on the GDS-15). The more problem behaviors identified and the greater the functional impairment of the patient, the higher the strain score deciles and the more likely the carer was to be depressed. Spouses were associated with lower carer strain scores. Patient diagnoses did not affect carer depression or carer strain.

Conclusion: We found high levels of depression in the primary carers of community-dwelling patients attending an old age psychiatric service. The patients' behavior and their cognitive and functional ability conferred greater risk of carer depression or strain than their diagnosis. These risk factors may help identify carers at risk of strain and depression.

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Nursing support and caregiver strain

Objective. To examine the possible association between satisfaction with nursing support and the risk of caregiver strain in informal carers in four Basic Health Areas in Barcelona from 2001 to 2002. Method. An observational, descriptive, cross-sectional study was performed. Subjects were 65 informal carers of both sexes of individuals aged 65 years or older with chronic or terminal diseases, or dementia. Carer-related variables were: age, gender, family relationship with the patient, degree of burden, risk of abandonment, and satisfaction with nursing support. Patient-related variables were: age, gender, type the disease, and degree of dependency. To evaluate the degree of burden in the informal carer, the Zarit scale was used. Results. The mean age of informal carers was 60 years, and most were women (56; 86%). Informal carers had a mean score of 61.20 points on the Zarit scale (SD = 16.50; 95% confidence interval, 57.11-65.29). There were 42 (65%) informal carers at risk of caregiver strain (65%). No statistically significant differences were found between satisfaction of the informal carer and the risk of caregiver strain. Conclusions. The profile of the informal carer corresponds to women with a high level of satisfaction with nursing support and a high risk of caregiver strain.

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Support for the families and carers of drug users: a review of the literature

This report seeks to review research and evaluation evidence with qualitative consultations to elicit views and experiences of service providers and users. It sseks to identify key principles and elements of effective practice possibly leading to models of service The approach adopts current work on treatment services and support for the families and carers of drug users follows this model.

Original report on Scottish Government website.

Coping with dementia and older families of adults with Down syndrome

The authors studied a group of older carers of aging adults with Down syndrome (DS) to ascertain what effects such caregiving may have on them given the presence or possibility of age-associated decline or dementia. The study also examined the comparative levels of care provided, key signs noted when decline was beginning, the subjective burden experienced, and what were the key associated health factors when carers faced a changed level of care. The authors found that this group was made up of long-term, committed carers who have decided early on to look after their relative with DS over their lifetime. When faced with the onset and ongoing progression of dementia, their commitment was still evident as evidenced by adopting physical accommodations and finding ways to continue to provide care at home, while also seeking help from outside sources. Most saw a family or group home environment as the place of choice for their relative with DS when they decided they could no longer offer care. The study did not ascertain any burn-out or significant health related problems associated with their continued caregiving save for their concerns about day-to-day strain and what will happen in the future.

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Patterns of exclusion of carers for people with mental health problems - the perspectives of professionals

A major issue in research, policy and professional practice is the social exclusion of carers, in particular carers for people with mental health problems. In order to address the issue of social exclusion from the perspectives of professionals, 65 participants were interviewed. The sample included directors, managers and senior staff from the social care, health and voluntary sectors. Respondents were asked to comment at length on the social exclusion of carers. Findings highlight four main types of exclusion: first, personal exclusions, including stigma; keeping mental health problems ‘a secret’; and taboos surrounding mental health care; second, social exclusions, such as isolation; narrowing of social networks; restrictions due to time commitments; exclusions relating to education, training, employment and leisure; and young carers; third, service exclusions involving carers being taken for granted and having difficulties with access to appropriate services; and fourth, financial or economic exclusions that lead to carers paying for care. This paper documents patterns of exclusion and draws out implications for research, policy and professional practice. In conclusion this paper also considers the ways in which professionals and services may better promote the social inclusion of carers for people with mental health problems in the future.

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Clinical digest. Profiling of young carers could lead to better support from health professionals

Caring for a chronically ill relative takes a physical and mental toll on young carers, suggests a study in Austria.

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Caregiver Assessment of Support Need, Reaction to Care, and Assessment of Depression

The aims of this study were to: (a) identify New Zealand informal carers' support needs; (b) assess caregivers' depression; and (c) assess positive and negative aspects of caregiving. A sample of 287 carers from throughout New Zealand was recruited by advertisements in carer support organizations literature, in 2008. Data were collected using Centre for Epidemiologic Short Depression scale (CES-D10), Caregivers Reaction Assessment scale (CRA), and open-ended questions. Carer burden was significant (p ≤ .01) in the 60 to 69 age group. The relationship between CRA and CES-D10 in carers in the 50 to 59, 60 to 69 carer age groups; and 0 to 29, 60 to 69, 70 to 79, and 80 plus care recipient age groups were also significant. Mean burden was highest in the 50 to 59 age group (77/120) with depression mean highest in the 30 to 39 age group (14/30). Carers commonly discussed the adverse effects of caregiving on identity, lifestyle, health, and financial situation. Lack of information, poor respite care, and combining work with care were major frustrations. If the government wishes to successfully pursue initiatives allowing people to remain at home, more resources are needed to adequately support carers.

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Barriers to community support for the dementia carer: a qualitative study

Objectives: To understand how carers of dementia sufferers gain access to community support and to determine potential barriers for carers.

Design: Qualitative study using semi-structured interviews of carers after an Aged Care Assessment Team intervention.

Setting: Australian metropolitan Aged Care Assessment Team.

Subjects: 24 live-in carers of dementia sufferers.

Main outcome measures: Carers' subjective experience of sources of stress in their care of the dementia sufferer focusing on interactions with the general practitioner and formal community support agencies.

Results: Most carers suffered high levels of stress, mainly due to behaviour disturbances and care needs of the dementia sufferers. Problems with health care agencies were also reported by a majority of the carers to be contributors to their distress. General practitioners were perceived to have referred dementia sufferers late for community care, despite the carer having experienced difficulties for a considerable time period. Carers also complained that too little information was provided about the diagnosis of dementia, how to deal with problem behaviours and how to access support services before and after the assessment procedure.

Conclusions: Problems with the interaction between the carer and the general practitioner appear to be important in delaying access to appropriate support and information. Earlier recognition of carers' problems, the provision of better education and earlier access to support services may lessen the degree of stress experienced by carers. Copyright © 2000 John Wiley & Sons, Ltd.

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A comparative study of stress and unmet needs in carers of South Asian and white adults with learning disabilities

People with learning disabilities have high dependency needs and high prevalence of physical, psychological and social morbidities. Some studies have shown that South Asian and white populations have a similar prevalence of learning disabilities and related psychological morbidity (McGrother et al, 2002), although other studies have shown an increased prevalence of severe levels of learning disabilities in the South Asian population (Emerson et al, 1997). The aim of this study was to compare stress levels and unmet service needs in informal carers of South Asian and white adults with learning disabilities.A sample of 742 informal carers was selected from the Leicestershire Learning Disability Register. Data on carers' and subjects' demographic details, stress levels and unmet service needs were analysed and compared using chi‐square tests and logistic regression analyses. Substantial differences were observed between the two groups. Carers of South Asian adults with learning disabilities reported significantly higher levels of care provision and unmet needs. Major stress was reported in 23% of carers. This was more common in carers with poor health, in those caring for younger adults, carers of adults with psychological symptoms, and in those with an expressed need for moral support or respite care.Stress is common among informal carers of adults with learning disabilities and inequalities, in reported care given and unmet needs, exist between carers of South Asian and white adults. Practitioners need to be aware of factors associated with stress when assessing carers in this population.

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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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An evaluation of the effectiveness of a case-specific approach to challenging behaviour associated with dementia

Objectives: Treatment of challenging behaviour in dementia using standardized psychopharmacological or psychosocial approaches remains problematical. A case-specific approach was trialled in this study, based on extensive evidence that each case is different in aetiology, the effects of the behaviour on others and what interventions are possible given the available resources.

Method: Forty-four consecutive referrals for challenging behaviour (two-thirds in residential care) were assessed across multiple causal domains. Both assessment and development of interventions were undertaken in collaboration with family carers and care staff. Measures of behaviour and associated carer distress, as well as medication and service use, were taken pre-intervention and at 2- and 5-month follow-ups.

Results: Psychotropic medication was used with a minority of participants but, overall, antipsychotic use was reduced. Psychosocial methods predominated, with 77% of cases judged as mainly or entirely psychosocial by an expert panel. There were significant mean improvements in behaviour and carer distress. Using conservative criteria there was a 65.9% clinical success rate.

Conclusion: Results confirm those of other studies which have used multifaceted interventions tailored to the unique needs of each case. They compare favourably with results from trials of standardized psycho-pharmacological or psychosocial approaches. More trials are needed, necessarily involving further development of robust methodologies which reflect the case-specific nature of challenging behaviour associated with dementia.

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Dyadic relationship scale: A measure of the impact of the provision and receipt of family care

Purpose: This study evaluated the psychometric properties of the Dyadic Relationship Scale (DRS), which measures negative and positive dyadic interactions from the perspective of both the patient and the family caregiver. An important aspect of evaluating the DRS was that it be statistically sound and meaningful for both members of the dyad. Design and Methods: The study used a cross-sectional design. Survey packages were mailed to home health care patients and their family caregivers. The unit of analysis was the dyad, and exploratory and confirmatory factor analyses were conducted. We examined the reliability, discriminant, and concurrent validities of the instrument. Results: The data supported a two-factor DRS that included negative dyadic strain (patient α =.84; caregiver α =.89) and positive dyadic interaction (patient α =.86; caregiver α =.85). The analysis supported the DRS's construct, discriminant, and concurrent validity, as well as its reliability for both patients and family caregivers. Implications: Using the DRS to measure the impact of family care on positive and negative interactions inclusive of patients and caregivers can assist in identifying areas of difficulty and guide interventions to improve outcomes for both members of the dyad.

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Perceptions and management of change by people with dementia and their carers living at home

This article presents findings from a research study that examined, by observation and interview, the nature of care as a form of social organization in the homes of people with dementia whose care was at least partly provided by relatives or friends. Twenty situations were included in which the carers and people with dementia were interviewed. Each participating pair was observed for an average of nine hours. Change was perceived, on the whole, in negative terms for both caregiver and the person with dementia. The main categories of change to emerge were those to do with normal routines or practices, perceived deterioration in the condition of the person with dementia, and changes concerning living arrangements. Coping strategies used reflect those in the general coping literature. They included denial, attempts to restore the situation or regain control, making positive comparisons, attempting to understand dementia and acceptance.

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Monitoring the formal and informal carers' stress in the Alzheimer Special Care Units: Methodology and results

The care process of the person with dementia takes place within the so called "social triangle" formed by the person, family members, professional carers. One of the main objectives in dementia care is to build up a therapeutic alliance aimed at promoting the well vbeing of the persons suffering for dementia and their carers. The placement of the person with dementia doesn't always meens the end of the burden of care for family members, who typically continue their caregiving activities after instituzionalzation. The pourpose of the work was to better understand the stress of the unformal caregivers, during the placement, and to know the main stress predictors among the staff working in the Special Care Units for Alzheimer Disease and related disorders. For the family we found a correlation between stress and: being femele, being spouse, taking care of people with an erliar age of onset, low education, cohabitation with the person with dementia. For the staff we found an opposite correlation between stress and years of work: for more years of work lower stress levels. The physical space in which the person with dementia lives and the staff works, was related to stress for both unformal and formal carers. The appraisal of their own work was much better for people working in Special Care Units when compared with people working in long-stay wards.

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Stress, distress and mucosal immunity in carers of a partner with fronto-temporal dementia

Objectives: This study investigates the psychological and physiological impact of caring for a partner with fronto-temporal dementia (FTD). Carers were expected to exhibit greater stress and poorer psychological well-being in comparison with non-carers, and suppressed mucosal immunity.

Method: Twenty-five carers and 36 non-carers completed standardised psychological assessments of perceived stress, psychological well-being, coping and social support. Levels of mucosal immunity were assessed in saliva samples collected over the 3 days of the study, alongside daily assessments of stress, arousal and mood.

Results: Informal carers as a group reported greater stress and poorer psychological well-being, but there was considerable variation, with some carers reporting better psychological functioning than non-carers. Immune levels were not suppressed in carers compared with non-carers; counter to hypothesis, there was a positive correlation between immunity and poorer psychological well-being.

Conclusions: This research suggests that caring for a partner with FTD increases distress and carers might benefit from psychological intervention. However, the variation in psychological well-being requires explanation. Furthermore, this first examination of mucosal immunity employing participants experiencing enduring stress suggests that, in contrast to previous research, enduring stress does not lead to suppression of mucosal immunity and may actually enhance it.

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Tools to measure quality of life and carer burden in informal carers of heart failure patients: A narrative review

Background: Heart failure is a complex cardiac syndrome prevalent in an older population. Caring for heart failure patients through the disease trajectory presents physical and emotional challenges for informal carers. Carers have to deal with clinically unstable patients, the responsibility of managing and titrating medication according to symptoms and frequent admissions to acute care. These challenges compound the demands on caregivers’ physical and psychosocial well-being. Alongside the negative impact of being a carer, positive aspects have also been demonstrated; carers describe feelings of shared responsibility of caring with professional carers and the reward of supporting a loved one, which creates a new role in their relationship.

Aim: This review explores the dimensions that impact caregiver burden and quality of life in carers of patients with heart failure and highlights both the negative and positive aspects of being an informal carer for heart failure patients.

Design: This review followed the processes recommended for a narrative review. Studies identified were selected systematically following the PRISMA guidelines.

Data sources: Searches were conducted using the Medical Subject Headings (MeSH) and keywords of the following search engines: MEDLINE, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Embase, Applied Social Sciences Index and Abstracts (ASSIA), PsycINFO and Cochrane for literature published until January 2012.

Results: Quality assessment of the studies was conducted using quality indicators, and the studies included in this review were categorised as fair or good according to the criteria. Of the 1008 studies initially identified, 16 studies met the inclusion criteria. A thematic synthesis was undertaken, and the following themes were identified

  • Perceived carer control;

  • Mental and emotional well-being;

  • Types and impact of caregiving tasks;

  • Impact of patients’ physical condition;

  • Impact of age/gender/demographic factors;

  • Positive aspects of caregiving.

Conclusions: This review highlights evidence that informal carers supporting patients with heart failure face many challenges impacting their physical and mental well-being. The studies described provide an insight into the individual dimensions that make a carer particularly vulnerable, namely, younger carers, female carers and carers with existing physical and emotional health issues. Additionally, there are external influences that increase risk of burden, including New York Heart Association Score status of the patient, if the patient has had recurrent emergency admissions or has recently been discharged home and the level of social support available to the carer. A further finding from conducting this review is that there are still limited measures of the positive aspects of caregiving.

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Spousal Caregiving and Financial Strain Among Middle-Aged and Older Adults

We examine whether spousal caregivers face difficulties in meeting their basic household expenses compared to nonspousal caregivers and whether social support mechanisms ameliorate any financial strain from caregiving responsibilities. We use data for caregivers aged 45 and over drawn from a nationally representative, cross-sectional Canadian Community Health Survey-Healthy Aging (N = 5,067). Spousal caregiving is associated with a 35% increase in the likelihood of experiencing difficulties in meeting basic expenses compared to other types of caregiving. Each of social support mechanisms (affectionate, emotional/informational, and positive social interaction), singularly and combined, lessens financial strain from caregiving. Our findings suggest that spousal caregivers are particularly vulnerable because they have fewer resources to draw on for support and perform much more intensive care. Our results highlight the importance of developing appropriate policies and programs to support caregivers.

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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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Determinants of burden in those who care for someone with dementia

Objectives: Caregiver burden is a key measure in caregiver research and is frequently used as a baseline measure in intervention studies. Previous research has found numerous factors associated with caregiver burden such as the relationship quality between carer and patient, the patient's cognitive ability, behavioural and psychological symptoms displayed by the patient, caregiver gender, adverse life events to name a few. Many studies have investigated these factors singularly however current thought suggests a multi-factorial role and inter-dependence of these factors. Based on this it was decided to investigate factors associated with caregiver burden using a multiple regression analysis in order to ascertain the predictive quality of these factors of caregiver burden.

Method: Cross-sectional study using validated measures of a patient's cognitive ability, ability to carry out day-to-day tasks and behavioural and psychological symptoms. Caregiver outcomes used are caregiver burden, relationship quality, caregiver confidence, experience of adverse life events, neuroticism, age and gender. Interviews and questionnaires were carried out on 74 patients diagnosed with dementia and their main caregivers from the Midlands of England.

Results: Multiple regression analysis showed that caregiver overload, carer-patient relationship quality, the experience of adverse life events, caregiver gender, caregivers' level of neuroticism, caregiver role captivity and the level of caregiver confidence accounted for over 80% of the variance in caregiver burden.

Conclusion: These results confirm previous correlational research on caregiver burden. Furthermore, due to the use of multiple regression analysis the findings also show factors that are clear predictors of caregiver burden and we offer possible suggestions from these findings on future clinical practice interventions on caregiver burden. Copyright © 2008 John Wiley & Sons, Ltd.

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Exploring coping strategies of carers looking after people with intellectual disabilities and dementia

Purpose – Carers play a vital role in looking after people with intellectual disabilities (ID). Caring role can be stressful and challenging in nature. Carers use various coping strategies to deal with stressors. The purpose of this paper is to explore coping strategies of carers looking after people with ID and dementia.

Design/methodology/approach – Qualitative methodology was used to explore coping strategies. Focus groups and face-to-face interviews were carried out. These interviews were transcribed and analysed using thematic analysis.

Findings – Nine interviews with carers (six paid carers and three family carers) and two focus groups with nursing staff looking after people with ID were carried out. Three key themes of “Narrative”, “Strategy toolbox” and “Compartmentalisation” emerged from analysis. Narrative and strategy took box were further subthemed. Carers had narratives about them and the person they look after. These “narratives” helped them to deal with day to day stressors. They also carried a “strategy toolbox”, which they used when they were in stressful situations. Compartmentalisation helped them to separate their personal life from work life as a carer.

Originality/value – Understanding carers’ coping strategies is important when planning services to help carers who play an important role in our society. Professionals can support carers to understand and improve their existing coping skills and help them to thrive in their role as carers.

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Giving care to people with symptoms of AIDS in sub-Saharan Africa

In rural sub-Saharan Africa, most care for patients with AIDS is provided at home by relatives. Caring for those with AIDS is assumed to be a substantial burden, but little is known from the perspectives of those who provide the care. In this paper we use interviews with caregivers, supplemented with survey data from a larger study in rural Malawi, to investigate this issue. We focus on the caregivers’ diagnoses of the illness of their patients, the type and duration of the care they provided, the support they received from relatives and other members of the community, and the extent to which caregiving was experienced as an emotional, physical, and financial burden. Although none of the caregivers knew of a formal diagnosis and few explicitly named their relative's disease as AIDS, most appeared to suspect it. They described the illness using the typical symptoms of AIDS as they are locally understood and sometimes related the illness to their patient's sexual history. The care, typically given by close female relatives of the patient, was limited to the care that would be given to anyone who was seriously ill. What was striking, however, was the compassion of the caregivers and the attempts they made to provide the best care possible in their circumstances. For most caregivers, kin and members of the community provided social, moral, and physical support, as well as modest financial assistance. Caregiving was physically and emotionally demanding and confined the caregivers to their home, but most caregivers did not consider caregiving a problem primarily because the patients were close relatives. The financial impact of caregiving was typically modest because the caregivers had very little income and few possessions to sell.

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A stress process model of family caregiver service utilization: factors associated with respite and counseling service use

This study examines whether caregivers' differential utilization of respite and counseling support services is associated with different situational stress processes. A multinomial regression analysis was conducted to compare respite users, counseling users, and those who used neither service, using data collected on a statewide random sample of 1,643 California caregivers providing assistance to individuals aged 50 or older. Compared with caregivers who used neither service, respite service users were more likely to have demanding care situations giving rise to physical symptoms of stress, and were more likely to use community services for the care recipient to augment their care. In contrast, counseling service users were more likely to be managing the meaning of their care situation by seeking out information about services and talking with a confidant about their situation, while coping with both emotional and physical symptoms of stress. Tailoring caregiver interventions to meet the support needs and coping strategies stemming from diverse caregiving situations and caregiver characteristics may increase the likelihood that those interventions will be effective in alleviating or preventing deleterious secondary stress frequently experienced by family caregivers.

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Caring for children with learning disabilities: an exploratory study of parental strain and coping

Despite recurring concerns about the role and appropriate support of informal carers, little is known about the parental experience of caring for children with learning disabilities in Ireland. This study describes and analyses the nature and consequences of care and coping among parents of children (<16) with learning disabilities living in the Greater Dublin area. Participants ( n = 32) completed the Caregiver Strain Questionnaire and an adapted version of the Carers Questionnaire which assessed: care tasks/behavioural difficulties; caregiver attitudes; service provision; and coping strategies. Qualitative analysis examined factors affecting carers' ability to cope. Participants showed high levels of objective and subjective caregiver strain and most were receiving inadequate support. However, parents employed a range of strategies to help them cope more effectively. The qualitative data highlighted the difficulties and rewards of caregiving and the inadequacies of current service provision.

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Burden of care in amyotrophic lateral sclerosis

Objectives: Amyotrophic lateral sclerosis (ALS) is a fatal disease with unique demands on patients and carers. Patients and methods: The total burden of care and burden components in 37 ALS carers were measured using validated questionnaires. Furthermore, influencing factors (functional impairment of the patient, additional carers, participation in support groups) were assessed. Results: The mean total burden of care for ALS was low compared with dementia, mixed neuropsychiatric and internal diseases, but was correlated with functional impairment (P = 0.003). The main burden components were 'personal and social restrictionsfland ’physical and emotional problems‘. Problem behaviour of the patients was low in general, but was higher in carers participating in support groups (P = 0.002). Carers supported by additional carers had higher strain. Conclusion: The low burden of ALS carers may be caused by the low incidence of problem behaviour in ALS patients. However, if problem behaviour exists, carers participate more often in support groups, indicating the need for assistance. The burden of care increases with the functional impairment. Support for the carers has to start sooner.

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Burden weighs heavily

A carer is in danger of collapsing under the weight of responsibility. This article looks at how social workers were able to provide her with the support to help her carry on.

The long-term effect of group living homes versus regular nursing homes for people with dementia on psychological distress of informal caregivers

Objective: In this follow-up study, the long-term influence of group living homes (GLHs) on informal caregiver distress was compared with modern yet regular nursing homes (NHs).

Method: Informal caregivers of GLH (N = 37) and NH residents (N = 49) were studied at the time of admission, 6 months thereafter, and approximately 24 months after admission. Repeated measures of ANOVA were performed to study group-by-time effects on psychopathology, role overload, and feelings of competence.

Result: All outcomes of psychological distress in GLH caregivers showed significantly greater decline compared with NH caregivers during the first six months after admission. The course of psychological distress stabilized in both caregiver groups after six months.

Conclusion: GLHs may have played a role in reducing caregiver burden during the first six months after the nursing home admission of the care recipient. The stabilization of caregivers’ psychological distress between T1 and T2 may indicate that there is no further room for improvement in the GLH and NH groups after six months. The implication would be that both GLHs and NHs succeeded in keeping caregivers’ distress relatively low over the long term. More knowledge is needed on whether and how caregivers’ psychological distress after institutionalization of the care recipient can be reduced to a greater extent.

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Effectiveness of web-based versus folder support interventions for young informal carers of persons with mental illness: A randomized controlled trial

Objective: Compare the impact of two interventions, a web-based support and a folder support, for young persons who care for people who suffer from mental illness.

Methods: This study was a randomized control trial, following the CONSORT statements, which compared the impact of two interventions. Primary outcome variable was stress, and secondary outcome variables were caring situation, general self-efficacy, well-being, health, and quality of life of young informal carers (N = 241). Data were collected in June 2010 to April 2011, with self-assessment questionnaires, comparing the two interventions and also to detect changes.

Results: The stress levels were high in both groups at baseline, but decreased in the folder group. The folder group had improvement in their caring situation (also different from the web group), general self-efficacy, well-being, and quality of life. The web group showed increase in well-being.

Conclusion: Young informal carers who take on the responsibility for people close to them; suffer consequences on their own health. They live in a life-situation characterized by high stress and low well-being. This signals a need for support.

Practice implications: The non-significant differences show that each intervention can be effective, and that it depends upon the individual's preferences. This highlights the importance of adopting person-centered approach, in which young persons can themselves choose support strategy.

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Screening for elder abuse in dementia in the LASER-AD study: prevalence, correlates and validation of instruments

Background: Several studies have investigated abusive behaviour by carers towards people with dementia, most using unvalidated scales; only two reported correlates of abuse after controlling for mediators and confounders, and these controlled for different factors.

Objective: To investigate the acceptability and validity of the Modified Conflict Tactics Scale (MCTS) and abuse correlates.

Methods: Eighty-six people with Alzheimer's disease and their family carers, originally recruited for a representative community study were interviewed. We asked carers about acceptability of the MCTS and investigated its validity by comparing scores to the Minimum Data Set (MDS) abuse screen (an objective measure) and testing hypotheses that MCTS score would correlate with the COPE dysfunctional coping scale but not carer education.

Results: Twenty-four (27.9%) were identified as abuse cases by interview. No care recipients (CRs) screened positive for abuse using the MDS screen. Seventy-two (83.7%) participants thought that the scale was acceptable, ten (11.6%) that it was neither acceptable nor unacceptable, and three (3.5%) that it was unacceptable. As hypothesised, MCTS scores correlated with dysfunctional coping scale score but not carer education.

Conclusions: This is the most comprehensive study so far in this field. The MCTS was acceptable and had convergent and discriminant validity for measuring carer abuse. The MDS failed to identify cases of abuse. Carer male gender and burden, and greater CR irritability, cognitive impairment but less functional impairment predicted carer abusive behaviour. Our findings appear to refute UK government elder abuse reduction policy which assumes that few incidents of abuse arise from carer stress.

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Trauma and growth in Canadian carers

The phenomenon of post-traumatic growth has been explored within the context of HIV disease in only a limited fashion. One hundred and seventy-six bereaved HIV/AIDS carers located all over Canada responded to a questionnaire about their experiences; 51.7% of these individuals were male, 46% were female and 2.3% were transgender. The range of deaths experienced was from 0 to 110. Forty-four per cent of the carers were themselves HIV-positive. Of all the HIV carers in this study, 86.4% of them exhibited symptoms of post-traumatic stress disorder. Despite this, 81.8% had scores high enough to be indicative of post-traumatic growth. This study provides a portrait of bereaved HIV carers in Canada and both the positive and negative realities associated with that situation.

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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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Caregiving for Parents and In-Laws: Commonalities and Differences

This study examined support, stress, and well-being between adults who provide care for an aging and disabled parent and those who care for an aging and disabled parent-in-law. The study utilized a sample of individuals caring for a parent (n = 77), individuals caring for an in-law (n = 26) and a comparison group of noncaregivers (n = 1,939) from the Midlife Development in the United States study. In-law caregivers provided more financial assistance but adult child caregivers provided more emotional support and unpaid work. Adult child caregivers reported poorer mental health and family strain; in-law caregivers reported more spouse support and less family strain.

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Attitudes and support needs of Black Caribbean, South Asian and White British carers of people with dementia in the UK

Family carers are the most important source of dementia care, especially among ethnic minority populations, who are less likely to access health or social services. The evidence base on the carer experience in these communities is profoundly limited.

To explore the caregiving attitudes, experiences and needs of family carers of people with dementia from the three largest ethnic groups in the UK.

A qualitative study, using a grounded theory approach. In-depth individual interviews were conducted with 32 carers of people with dementia (10 Black Caribbean, 10 south Asian, 12 White British).

Carers were identified as holding a ‘traditional’ or ‘non-traditional’ caregiver ideology, according to whether they conceptualised caregiving as natural, expected and virtuous. This informed feelings of fulfilment, strain, carers' fears and attitudes towards formal services. The majority of the south Asian, half of the Black Caribbean and a minority of the White British participants were found to possess a traditional ideology.

The findings suggest that specific cultural attitudes towards the caregiving role have important implications for how carers can best be supported.

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A pilot study of how information and communication technology may contribute to health promotion among elderly spousal carers in Norway

The objective of this pilot Norwegian intervention study was to explore whether use of information and communication technology (ICT) by informal carers of frail elderly people living at home would enable them to gain more knowledge about chronic illness, caring and coping, establish an informal support network and reduce stress and related mental health problems. Potential participants were close relatives of an elderly person with a diagnosis of a chronic illness dwelling in the same household who wished to continue caring for their relative at home, were 60 years of age or older, had been caring for less than 2 years, were a computer novice and had Norwegian as their first language. Nineteen elderly spousal carers participated in the study from two municipalities in eastern Norway. The project commenced in January 2004 and consisted of a multimethod evaluation model. Outcomes measured included carers’ social contacts (measured by the Family and Friendship Contacts scale); burden of care (measured by the Relative Stress scale); and knowledge about chronic disease and caring, stress and mental health and use of ICT (examined via a composite carer questionnaire). These quantitative data were collected immediately prior to the study and at 12 months. Qualitative data were also collected via focus group interviews with participant carers at 7 months. At follow-up, quantitative measures did not reveal any reduction in carer stress or mental health problems. However, carers reported extensive use of the ICT service, more social contacts and increased support and less need for information about chronic illness and caring. Contact with and support from other carers with similar experiences was particularly valued by participants. The intervention also enhanced contacts with family and friends outside the carer network. Thus, it can be seen that ICT has the potential to contribute to health promotion among elderly spousal carers.

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An investigation of carers' burden: before and after a total hip replacement

Osteoarthritis in the hip joint is a chronic degenerative condition, causing pain and disability. As the disease progresses, the individual's health deteriorates. This often results in one of the family members having to assume a carer role to assist the care receiver in personal and domestic activities of daily living. The purpose of this study was to investigate whether carers experienced stress from looking after individuals with osteoarthritis who were waiting for a total hip replacement.

The survey was conducted with 23 carers using postal questionnaires before and 3 months after the care receivers had undergone a total hip replacement. It concluded that carers do experience stress from looking after people with osteoarthritis waiting for a total hip replacement and that the carers' stress level was not reduced significantly 3 months after the hip operation. The results of this study have implications for health care professionals who come into contact with this group of carers.

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Work-related factors and early retirement intention : a study of the Danish eldercare sector

Background: Western countries are experiencing an ageing and shrinking workforce in the eldercare sector. This study investigated whether 12 different work-related factors are associated with early retirement intentions of employees in the Danish eldercare sector. We tested whether three hypotheses explained the increase of early retirement intention: (i) high job demands (four factors) and low resources (four factors); (ii) low job attitude (three factors); and (iii) high physical strain (one factor). Methods: We included 2444 employees (aged 45–57 years) from two waves (T1 and T2) from a prospective study. Multinomial logistic regression models showed whether 12 work-related factors (T1) were associated with early retirement intention (T2); very early retirement intention and early retirement intention vs. normal retirement intention. Results: Only 14% of the participants wished to retire at the normal retirement age (65 years or older). High physical strain [hypothesis (iii)] and low and normal affective organizational commitment [hypothesis (ii)] were associated with very early retirement intention. None of the other work-related factors associated with early retirement intention. Conclusions: Future interventions should focus on reducing physical strain and increase or maintain affective organizational commitment among employees in the eldercare sector to postpone retirement.

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Informal caring for stroke survivors: Meta-ethnographic review of qualitative literature

Stroke is a very common cause of adult disability often leaving stroke survivors dependent on others. Much of this support comes from informal carers. Research has demonstrated the importance of these carers to survivors’ recovery but also suggests that caregiving has adverse consequences. Meta-ethnography was applied to review qualitative research looking at informal stroke carers’ experiences and responses to caring. Electronic databases from 2006 to 2009 were searched and after application of inclusion and exclusion criteria, seven studies were reviewed.

The experience of caring for stroke survivors centres around change and loss overlaid with uncertainty. Change includes changes in roles and relationships. Losses include former relationships, autonomy and taken-for-granted futures. These challenge carers’ perception of their identity.

Carers respond cognitively and practically and attempts to reconstruct their lives may lead to acceptance and adjustment. This process is one of biographical disruption for carers but can result in personal growth.

If carers and stroke survivors are to be supported, acknowledging specific issues including role and relationship changes and perceptions of reduced autonomy may be more valuable than attempting to reduce carer burden or strain. Clinicians frequently only see families over short periods and may therefore have little understanding of the major, long-term disruptive impact of caregiving. If professionals working with families of stroke survivors are made aware of this and of the necessity for carers to come to terms with their changed roles and identities, they will be better equipped to understand and respond to carers’ practical and emotional needs.

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A structured multicomponent group programme for carers of people with acquired brain injury: effects on perceived criticism, strain, and psychological distress

OBJECTIVES: The purpose of this study was to examine whether a brief structured multicomponent group programme for carers of people with acquired brain injury (ABI) was effective in reducing carer distress, strain, and critical comments between carer and person with an ABI compared to a waiting list control condition. DESIGN: Waiting list controlled study. Pre- and post-test design with outcomes measured at induction, at the end of the intervention, and at the 3-month follow-up.

METHODS: One hundred and thirteen carers took part in the study: 75 carers in the intervention group and 38 in the waiting list control group (2:1 ratio). All participants completed assessments of caregiver strain (Caregiver Strain Index), perceived criticism towards and from the person with an ABI (Perceived Criticism Scale), and psychological distress (Hospital Anxiety and Depression Scale). The person with an ABI was also assessed on the Functional Independence Measure/Functional Assessment Measure.

RESULTS: Using an intention to treat analysis, there were significant effects of group (intervention vs. waiting list control) at the 3-month follow-up on carers' perceptions of stress and strain resulting from caring, and perceptions of criticism received by the carer from the person with an ABI. A subsequent per-protocol analysis showed an additional reduction at 3 months in levels of criticism expressed towards the person with an ABI by the carer. There was no significant effect of the intervention on psychological distress.

CONCLUSIONS: The structured multicomponent carers programme showed beneficial effects in terms of reducing carer strain and in the reduction of elements of perceived criticism at the 3-month follow-up; however, it did not significantly affect psychological distress in carers, suggesting the need for additional support for this group of carers.

STATEMENT OF CONTRIBUTION: What is already known on this subject? A number of studies have suggested that carers of people with acquired brain injury (ABI) experience greater levels of carer burden and mental health difficulties than carers of other patient groups. Previous interventional studies on ABI are few, and such studies have diverged in the extent to which they have been oriented towards education, psychological support, or management of behavioural difficulties, making results somewhat difficult to apply in community health settings with this potential client group. What does this study add? We develop, describe, and evaluate a brief structured multicomponent carers' training and support programme for carers of people with ABI. Not all outcomes were affected positively by the intervention. While the intervention successfully reduced carer strain and critical comments, distress did not significantly reduce compared to people in a waiting list control group. Carers who were spouses/partners and carers who were parents exhibited comparable levels of strain, distress, and perceived criticism. Younger carers reported significantly higher levels of distress and carer strain at induction to the programme. The positive effects of the programme were maintained for at least 3 months, suggesting that it may have initial validity for improving some of the negative aspects of the carer experience.

© 2015 The British Psychological Society.

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Predictors of psychological distress in caregivers of older persons with wet age-related macular degeneration

Objectives: Several studies have investigated the biopsychosocial impacts of age-related macular degeneration (AMD) in regards to the older patient, little is known about the impacts associated with caring for individuals with AMD. We aimed to determine the predictors of subjective caregiver distress and other negative outcomes associated with caring for someone with advanced AMD.

Methods: Cross-sectional, self-complete survey involving 500 caregivers of persons with advanced AMD. Respondents were identified from the Macular Disease Foundation of Australia client database. Logistic regression tested the independent effects of care recipient and caregiver characteristics on study outcomes, including: caregiver psychological well-being, participation in recreational/social activities and retirement plans.

Results: Around one third of caregivers self-reported a high level of care recipient dependence. Over one in two caregivers reported a negative state of mind. Comorbid chronic illnesses in the care recipient were associated with the caregiver reporting psychological distress, multivariable-adjusted odds ratio, OR, 1.45 (95% confidence intervals, CI, 1.14–1.86). If the care recipient was highly dependent on the caregiver, there was 99% greater likelihood of caregiver distress, OR 1.99 (95% CI 1.01–3.93). Comorbid chronic conditions in the care recipient was associated with 49% and 31% higher odds of the caregiver reporting disruption to other areas of their life and retirement plans related to the caregiving experience, respectively.

Conclusions: A high prevalence of caregiver distress related to caring for persons with advanced AMD was observed. Level of dependence on the caregiver and presence of comorbid chronic illnesses were independent predictors of the caregiver experiencing psychological distress.

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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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A grounded theory longitudinal study of carers’ experiences of caring for people with dementia

Introduction: Increasingly the provision of care for older people with dementia has shifted from institutions to the community. This has resulted in an increase in burden and a reduction in autonomy for those who care for these individuals.

Aims: This study sought to identify, describe and explore the changes in the carers’ experiences of looking after a relative living with dementia, and the effects of caring on the carers’ autonomy and health over time.

Research Methods: A longitudinal, grounded theory approach in three phases was used. In-depth interviews were conducted with six spouses at the beginning, at six months and at eighteen months. A constant comparative analysis of taped and transcribed interviews was used.

Findings: Four categories emerged: My Life Changed, Commitment, Responsibility and Duty, and Support. The core category My Life Changed was identified as representing the beginning of the caregiving journey; and the learning from experience that occurred as a consequence of that journey, offering a new perspective on the experience of carers. Commitment refers to a deepened and sustained element; Responsibility and Duty increases over time and finally Support refers to the fluctuating nature of help provided by formal and informal sources. All participants experienced changes in the caregiving journey; the degree and nature of necessary adaptations varied.

Conclusions: A Theory of Caring emerged, but what changes were experienced did not appear to conform to any fixed pattern. All carers learned by experience to manage their situations. For all carers their autonomy and health was challenged.

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Caregiving burden, stress, and health effects among family caregivers of adult cancer patients

Unlike professional caregivers such as physicians and nurses, informal caregivers, typically family members or friends, provide care to individuals with a variety of conditions including advanced age, dementia, and cancer. This experience is commonly perceived as a chronic stressor, and caregivers often experience negative psychological, behavioural, and physiological effects on their daily lives and health. In this report, the authors describe the experience of a 53-year-old woman who is the sole caregiver for her husband, who has acute myelogenous leukaemia and was undergoing allogenic haematopoietic stem cell transplantation. During this intense and unpredictable course, the caregiver's burden is complex and complicated by multiple competing priorities. Because caregivers are often faced with multiple concurrent stressful events and extended, unrelenting stress, they may experience negative health effects, mediated in part by immune and autonomic dysregulation. Physicians and their interdisciplinary teams are presented daily with individuals providing such care and have opportunity to intervene. This report describes a case that exemplifies caregiving burden and discusses the importance of identifying caregivers at risk of negative health outcomes and intervening to attenuate the stress associated with the caregiving experience.

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The effects of nursing home placement on the perceived levels of caregiver burden

Providing care for an ageing parent can be one of the most fulfilling life experiences for an adult child. It can also be one of the most exhausting physically, emotionally and financially. A carer experiences psychological and emotional changes when their dependent parent or spouse is placed into formal care. This research project uses the Montgomery Borgatta Caregiver Burden Scale, amended with a questionnaire, in a self-administered, anonymous survey to explore perceptions of caregiving burden before and after the nursing home placement periods. This research showed that numerous factors influence carers' perceptions of burden and the quality of relationships among family members.

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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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Family support for stroke: a randomised controlled trial

BACKGROUND: Attention is currently focused on family care of stroke survivors, but the effectiveness of support services is unclear. We did a single-blind, randomised, controlled trial to assess the impact of family support on stroke patients and their carers.

METHODS: Patients with acute stroke admitted to hospitals in Oxford, UK, were assigned family support or normal care within 6 weeks of stroke. After 6 months, we assessed, for carers, knowledge about stroke, Frenchay activities index, general health questionnaire-28 scores, caregiver strain index, Dartmouth co-op charts, short form 36 (SF-36), and satisfaction scores, and, for patients, knowledge about stroke and use of services, Barthel index, Rivermead mobility index, Frenchay activities index, London handicap scale, hospital anxiety and depression scales, Dartmouth co-op charts, and satisfaction.

FINDINGS: 323 patients and 267 carers were followed up. Carers in the intervention group had significantly better Frenchay activities indices (p=0.03), SF-36 scores (energy p=0.02, mental health p=0.004, pain p=0.03, physical function p=0.025, and general health perception p=0.02), quality of life on the Dartmouth co-op chart (p=0.01), and satisfaction with understanding of stroke (82 vs 71%, p=0.04) than those in the control group. Patients' knowledge about stroke, disability, handicap, quality of life, and satisfaction with services and understanding of stroke did not differ between groups. Fewer patients in the intervention group than in the control group saw a physiotherapist after discharge (44 vs 56%, p=0.04), but use of other services was similar.

INTERPRETATION: Family support significantly increased social activities and improved quality of life for carers, with no significant effects on 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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Informal caregivers' experiences of formal support in a changing context

As the location of long-term care of elderly people moves to homes and communities, and responsibility for care shifts to families, understanding the experience of people in this situation is necessary to ensure that support is appropriate, accessible and effective. The present paper explores informal caregivers’ and recipients’ relationships with formal support, drawing on thematic and narrative analysis of 30 in-depth interviews with self-identified family caregivers conducted over a year in a mid-size city in Ontario, Canada. All but six of these caregivers had had some interaction with formal support. The semistructured interviews explored caregivers’ knowledge about, and perceptions and experiences of accessing and using formal support. Interpretation reveals how confusion and lack of knowledge about services, the inflexibility and lack of availability of services, and increasing pressure on the quantity and quality of publicly funded community-based resources combine to impact negatively on the experience of accessing and using formal support. Different ideas about the relative roles and responsibilities of seniors, informal caregivers and ‘family’ in general, and the state both shape and are shaped by policies and the situated realities of the provision of formal support. Providing care at home creates both opportunities and constraints for caregivers in their interactions with formal support. Lastly, this paper highlights the difficulties of interacting with publicly funded formal support as the costs of care are moved away from the state and onto families and individuals.

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A cognitive behavioural approach for carers of significant others with depression: a pilot study

Depression is a common and chronic illness affecting nearly one in five people in their lifetime. The main responsibility for people suffering from depression falls to their carers. Research indicates that carers find the burden of caring for a family member enormous and often feel isolated with this burden (Highet et al, 2004). This paper presents an evaluation of a six‐week course held in Leeds, based on the principles of cognitive behavioural therapy and specifically aimed for carers. Cognitive behaviour therapy (CBT) is a recognised intervention technique for people with mental distress (Beck, 1976; Beck et al, 1979). The approach was used with carers to help them to become aware of their thoughts, feelings, behaviour and physical reactions to certain stressful situations when caring for a family member. The approach was introduced within the safety of a supportive group situation. Average attendance was 84% and feedback suggested that this approach was beneficial to carers in coping with the stress of the carer role.

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Reducing emotional distress in people caring for patients receiving specialist palliative care - Randomised trial

Background: Caring for relatives with advanced cancer may cause psychological and physical ill health.

Aims: To evaluate the effectiveness of increased support for distressed, informal carers of patients receiving palliative care.

Method: The sample was composed of 271 informal carers who scored over 5 on the 28-item General Health Questionnaire (GHQ–28). The intervention comprised six weekly visits by a trained advisor. Primary outcome was carer distress (GHQ–28) at 4-week, 9-week and 12-week follow-up. Secondary outcomes were carer strain and quality of life, satisfaction with care, and bereavement outcome.

Results: Scores on the GHQ–28 fell below the threshold of 5/6 in a third of participants in each trial arm at any follow-up point. Mean scores in the intervention group were lower at all time points but these differences were not significant. No difference was observed in secondary outcomes. Carers receiving the intervention reported qualitative benefit.

Conclusions: The intervention might have been too brief, and ongoing help might have had accruing benefits. Alternatively, informal carers of patients with cancer may already receive considerable input and the advisor’s help gave little additional advantage; or caring for a dying relative is extremely stressful and no amount of support is going to make it much better.

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A Yoga and Compassion Meditation Program Reduces Stress in Familial Caregivers of Alzheimer's Disease Patients

Familial caregivers of patients with Alzheimer's disease exhibit reduced quality of life and increased stress levels. The aim of this study was to investigate the effects of an 8-week yoga and compassion meditation program on the perceived stress, anxiety, depression, and salivary cortisol levels in familial caregivers. A total of 46 volunteers were randomly assigned to participate in a stress-reduction program for a 2-month period (yoga and compassion meditation program—YCMP group) (n=25 ) or an untreated group for the same period of time (control group) (n=21 ). The levels of stress, anxiety, depression, and morning salivary cortisol of the participants were measured before and after intervention. The groups were initially homogeneous; however, after intervention, the groups diverged significantly. The YCMP group exhibited a reduction of the stress (p<0.05 ), anxiety (p<0.000001 ), and depression (p<0.00001 ) levels, as well as a reduction in the concentration of salivary cortisol (p<0.05 ). Our study suggests that an 8-week yoga and compassion meditation program may offer an effective intervention for reducing perceived stress, anxiety, depression, and salivary cortisol in familial caregivers.

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Symptoms of dementia among adults with Down's syndrome: a qualitative study

Background  Dementia is common among adults with Down's syndrome (DS); yet the diagnosis of dementia, particularly in its early stage, can be difficult in this population. One possible reason for this may be the different clinical manifestation of dementia among people with intellectual disabilities.

Aims  The aim of this study was to map out the carers' perspective of symptoms of dementia among adults with DS in order to inform the development of an informant-rated screening questionnaire.

Method  Unconstrained information from carers of people with DS and dementia regarding the symptoms, particularly the early symptoms of dementia, was gathered using a qualitative methodology. Carers of 24 adults with DS and dementia were interviewed. The interviews were recorded and fully transcribed. The transcripts were then analysed using qualitative software.

Results  There appeared to be many similarities in the clinical presentation of dementia in adults with DS and the non-intellectually disabled general population. Like in the non-intellectually disabled general population, forgetfulness especially, impairment of recent memory combined with a relatively intact distant memory and confusion were common, and presented early in dementia among adults with DS. However, many ‘frontal lobe’-related symptoms that are usually manifested later in the process of dementia among the general population were common at an early stage of dementia among adults with DS. A general slowness including slowness in activities and speech, other language problems, loss of interest in activities, social withdrawal, balance problems, sleep problems, loss of pre-existing skills along with the emergence of emotional and behaviour problems were common among adults with DS in our study.

Conclusions  This study highlights the similarities in the clinical presentation of dementia among the general population and people with DS with a particular emphasis on the earlier appearance of symptoms associated with the frontal lobe dysfunction among adults with DS.

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The association between caregiving satisfaction, difficulties and coping among older family caregivers

Aims and objectives.  The aim was to study the association between gender, extent and content of care, satisfaction, coping and difficulties in the caregiving situation among older (75+) caregivers and to identify clusters of caregivers. The aim was also to explore psychometrically two instruments assessing satisfaction and difficulties in family caregivers.

Background.  Caregiving is a complicated phenomenon. Much of the research has focused on negative aspects, such as the burden, stress and emotional strain. Caregiving is known to affect health negatively for the caregivers. Little is known about satisfaction and motivation in voluntary work, such as informal caregiving, especially among older persons.

Design and methods.  Cross-sectional. The sample for this study consisted of 171 informal caregivers aged 75 and over, identified from an age-stratified sample in a postal survey among older people in the southern part of Sweden.

Results.  Male caregivers proved to be more satisfied than female caregivers; caregiving had seemingly widened their horizon and had helped them to grow as persons. Based on satisfaction scores, those satisfied had a higher proportion of male caregivers and a significantly higher amount of caregiving hours per week. They used other coping strategies than the respondents in the other cluster, i.e. less satisfied in using more problem-solving strategies.

Conclusions.  The instruments tested were appropriate for work in clinical and research settings, although the internal dropout indicates that a shorter version would be more useful. Those who found satisfaction in care used more problem-focused coping strategies and were more often men than women. From a salutogenic point of view, this may give important knowledge about factors that can promote health. The findings indicate that women deserve extra attention as informal caregivers as they did not find caregiving as rewarding as the men did. This may in turn make them less protected against the negative consequences of caregiving.

Relevance to clinical practice.  Reinforcing the health-promoting qualities in caregivers who are not feeling well, with women as a particularly vulnerable group, may restrict unnecessary suffering for both the caregiver and the person cared for.

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Can pharmacological treatment of behavioural disturbances in elderly patients with dementia lower the buden of their family caregiver?

Family caregivers of a community-dwelling demented relative experience significant burden in their caregiving role. In particular, behavioural disturbances are expected to be responsible for high caregiver distress and burden. Above, in approximately 80% of the cases, institutionalization of the demented patients with dementia occurs as a result of a burdened caregiver. Because of the impressive disruptive character of behavioural disturbances, most caregivers appeal for pharmacological intervention at a given moment, expecting instant suppression of the aberrant behaviour. Beside the antipsychotic drugs, the cholinesterase inhibitors are commonly used in the treatment of agitation, aggression, delusions, etc. Although in meta-analyses on the efficacy of both categories of drugs, only little evidence of their efficacy has been found and an important placebo effect has been reported that >90% of the demented elderly was treated at least once. The aim of this study was to investigate if pharmacological treatment of behavioural disturbances of the demented can lower the burden and the time spent in the family caregiver irrespective of their effect on the demented himself. A systematic literature search was performed by means of Medline, Embase, Cochrane DSR, Dare, CCTR and ACP Journal Club. Based on this review, pharmacological treatment of demented elderly seems to lower caregiver burden (mean difference 0.27) and the time caregivers spent (mean difference 41.65 minutes). Considering that family caregivers confronted with the troublesome behaviour of their demented relative will apply for pharmacological intervention, future research should particularly focus on the outcome measures of the caregivers' well-being.

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Informal carers of mentally infirm elderly in Lancashire

Objectives: To investigate the determinants of satisfaction in caregiving and to compare satisfaction in care-giving amongst carers of demented and non-demented mentally infirm elders; and, assess carer attitudes and concerns, and their implications on care in the community.; Design: Cross-sectional study of informal carers of the elderly referred to a psychogeriatric service, using a questionnaire investigating carer satisfaction (CASI), care-recipient dependency needs, carer burden (CADI), carer concerns and attitudes in relation to caregiving, and the 28-item GHQ.; Setting: Lancashire communities of Fleetwood, Thornton-Cleveleys, Poulton-Le-Fylde, and Over-Wyre.; Results: Carers achieved significant degrees of satisfaction in their role as care-givers; there was no significant difference in the degree of satisfaction gained by carers of the demented and non-demented. The mean CASI score, for carers of the demented and non-demented was 23(5.5) and 24.4 (5.7) respectively (mean difference -2.9; CI -4.6, 0.1; p=0.058). Dissatisfaction in care giving was determined by total burden (CADI) scores, and younger carer age. Emotional distress in carers was weakly inversely correlated with CASI scores (r=-0.21, p=0.042). Concerns expressed by carers, included desire for information on care recipient disability (39.5%) and fear of nursing/residential home placements (43%). Most carers had a generally positive attitude to care giving, in spite of significant degrees of burden to which they were subjected. Conclusions: Carer-related factors, particularly younger age, rather than dependency factors, were determinant of care giving satisfaction. Greater involvement of older persons in care giving should be encouraged, with younger persons assisting if care giving becomes overbearing. Carers require education on care-recipient disabilities and the benefits of care in formal care institutions.

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Understanding the caring capacity of informal networks of frail seniors: a case for care networks

Population ageing and constraints on public sector spending for older people with long-term health problems have led policy makers to turn to the social networks of older people, or the ‘informal sector’, as a source of long-term care. An important question arising from this policy shift is whether these social networks have the resources to sustain the high levels of care that can be required by older people with chronic health problems. In the face of both dire warnings about the imminent demise of the informal sector, and concurrent expectations that it will be the pillar of community long-term care, it is timely to undertake a critical analysis of the caring capacity of older people's social networks. In this paper we argue that the best way to understand the caring capacity of informal networks of frail older people is to establish their membership and caring capacity. It is useful to make conceptual distinctions between ‘social’, ‘support’, and ‘care-giving’ networks. We argue that transitions of networks from social through support to care roles are likely to show systematic patterns, and that at each transition the networks tend to contract as the more narrowly defined functions prevail. A focus on ‘care networks’, rather than the more usual ‘care dyads’, will move forward our understanding of the caring capacity of the informal sector, and also our ability to forge sound social and health policies to support those who provide care.

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Young carers as social actors: coping strategies of children caring for ailing or ageing guardians in Western Kenya

There is a vast body of research on the impact of HIV/AIDS on children, but little which acknowledges the role of children in providing care and support for ailing parents or ageing guardians. There has been a tendency to downplay the active role and agency of young carers, with young carers often represented as victims of damaging circumstances that compromise their psychosocial well-being. To counter-balance this tendency, and to develop the critical trend that views children as social actors, we explore how young carers cope with challenging circumstances, often with skill and ingenuity, drawing on data collected in Western Kenya in 2007. Forty-eight young carers (aged 11–17) used photography and drawing to provide accounts of their coping strategies. They described 240 of the resulting photographs and drawings in writing. In addition, 34 individual interviews and 2 group discussions were conducted with children to explore the findings further and 10 individual interviews with local adults were conducted to elucidate the dynamics between adults and children. Our data revealed that young carers cope by mobilising social support, engaging in income generating activities and constructing positive social identities around their caring roles. We conclude that children's ability to cope is determined by the extent to which they are able to participate in their community and negotiate support from it.

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Association between unmet needs for community services and caregiving strain

This study describes informal caregivers' unmet needs for community services and investigates the association between unmet needs and caregiving strain. The data used in this study were extracted from the Family Caregiving in the U.S. Survey and included 463 caregivers caring for an older adult who received community services. Among these caregivers, over one-third reported that the community services used by the care receivers did not meet their needs. Findings indicated informal caregivers who reported unmet needs were more likely to experience higher levels of emotional strain than those who did not report unmet needs after potential confounding factors were controlled for. However, the relationship between unmet needs and physical strain was marginally significant. 

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Correlates of intrusion and avoidance as stress response symptoms in family carers of patients suffering from dementia

AIMS: To explore intrusion and avoidance in family carers of dementia patients. METHOD: We studied 196 family carers of 196 home-dwelling dementia patients. Carers were assessed by the Impact of Events Scale (IES), the Geriatric Depression Scale (GDS), the State Trait Anxiety Inventory (STAI) and the Distress scale of the Neuropsychiatric Inventory (NPI-D), and patients with the Mini Mental State Examination (MMSE), the Disability Assessment for Dementia (DAD), and the Neuropsychiatric Inventory (NPI). RESULTS: Twenty carers (10%) scored above 19 on the intrusion and avoidance subscales of the IES, whereas 90 (47%) scored above 8 on both subscales. This moderate to high stress response was independently explained by being a spouse (OR 3.74 (95% CI 1.81-7.74)), high scores on GDS (OR 1.12 (95% CI 1.06-1.18) per unit increase) and high score on NPI-D (OR 1.05 (95% CI 1.01-1.09) per unit increase). CONCLUSIONS: Spouses and other family carers having daily contact with patients with dementia experience moderate to high levels of intrusion and avoidance. These symptoms are associated with symptoms of anxiety, distress and depression and should be taken into account when tailoring interventions for carers. Copyright (c) 2008 John Wiley & Sons, Ltd.

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A support group for caregivers of patients with frontotemporal dementia

Several recent articles have pointed out that caregivers of patients with frontotemporal dementia (FTD) need counselling and support. To date, however, no support groups have been provided other than those available to caregivers of patients with Alzheimer's disease (AD). At our outpatient unit for cognitive disorders we initiated a specific support group for caregivers of patients with FTD. This pilot project had four objectives: 1) to provide information, advice and support to caregivers, 2) to learn more about the specific problems and needs of family carers of patients with FTD and to explore the differences to caregiver burden in AD, 3) to encourage mutual support and development of coping strategies, 4) to evaluate the intervention using a questionnaire completed by the caregiver. Eight spouse caregivers of patients diagnosed with frontotemporal dementia (FTD) participated in special support groups. Seven weekly sessions of 90 minutes' duration were held. To evaluate the program participants were asked to complete a questionnaire about their satisfaction with the support group immediately after the final session. Six months after the intervention they received a questionnaire by mail gathering information on coping efficacy. It became obvious that many problems faced by caregivers of patients with FTD are different from those encountered in AD. During group meetings participants were encouraged to express their own needs and to deal with painful emotions, including aggression, anger, mourning and guilt. Caregivers felt relieved by sharing their problems with others. They were able to learn from each other and to share coping strategies. The group also helped to establish new social relations contacts and even friendships. The participants rated the program as useful and said that benefits were sustained even six months after termination. We conclude from these initial observations that caregiver support groups are a useful component in the management of patients with FTD. Such groups should be tailored to the specific problems and needs of these caregivers. To maintain benefits, self-help groups are recommended even in the absence of professional input.

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Family caregivers' compassion fatigue in long-term facilities

A Canadian study offers staff in the UK insight into the feelings of hopelessness and sadness that can engulf relatives assisting with care, say Beth Perry and colleagues

Aim: The aim of this study was to explore the presence of compassion fatigue in family carers who assist staff with care of older relatives in long-term settings.

Method: arrative data were collected through observation and conversations with five purposively selected family carers.

Findings: hematic and poetic analysis suggest that family carers exhibit symptoms associated in the literature with compassion fatigue in nurses and other healthcare professionals. Two major themes emerged: role engulfment and enveloping sadness.

Conclusion: Nurses working in long-term care settings should educate family carers about compassion fatigue, recognise its presence in them and provide support to family carers experiencing the condition.

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Family caregivers' experiences of relinquishing the care of a person with dementia to a nursing home: insights from a meta-ethnographic study

Many people with dementia are cared for in their homes by family caregivers. As the dementia progresses, admission of the family member to a nursing home becomes inevitable. The aim of this meta-ethnographic study was to describe caregivers’ experiences of relinquishing the care of a family member with dementia to a nursing home. A systematic literature search of PubMed, Cinahl and PsychInfo, between the years 1992 and 2012, was performed, and 10 qualitative articles, based on 180 family caregivers’ experiences, were included. The family caregivers’ described their experiences as a process that went from being responsible for the decision, through living with the decision, adjusting to a new caring role and having changed relationships. They felt unprepared and lonely with these changes. They experienced loss, guilt and shame, but also feelings of relief. Their roles in the nursing home environment were to make sure that the individual needs of the person with dementia were respected and to monitor the quality of care. They wished to maintain their relationship with the person with dementia and to establish meaningful relationships with caring staff. The process of relinquishing care is similar to a crisis process, which starts with a turning point, followed by a coping face and finally the outcome of the process. The adaption to the new situation can be facilitated if the family caregivers are recognised as partners in the care of the person with dementia. The family caregivers’ unique knowledge of their relatives’ previous life story should be acknowledged in both care planning and daily care. Welcoming family caregivers to regular meetings with staff can contribute to increase the feeling of partnership. Offering staff clinical supervision could be one way of preparing them to deal with the emotional strain reported by family caregivers.

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Psychological distress and rumination in palliative care patients and their caregivers

Background: This study is the first to explore how rumination or recurrent dwelling may contribute to psychological distress in palliative care. We hypothesised that rumination is important in palliative care because: (1) rumination is triggered by significant life events; (2) the diagnosis of a life-limiting illness means the reevaluation of a number of personal goals, which may become unattainable, and, thereby, lead to rumination; (3) palliative care patients and caregivers report a number of existential concerns, which in their style and content are characteristic of rumination.

Methods: This study adopted a cross-sectional design, comparing samples of palliative care patients (n = 36), their caregivers (n = 29), and an age-matched control group (n = 30). Participants completed a combination of standardized questionnaires to assess their levels of anxiety, depression, and rumination, and open-ended interviews to identify the concerns they were ruminating on and their idiosyncratic experience of rumination.

Results: As predicted, palliative care patients and their caregivers reported significantly more psychological distress than the control group. Palliative care patients and their caregivers also reported significantly more rumination on existential concerns (e.g., about the future) than the control group. The frequency of existential concerns and measures of rumination reported by participants positively correlated with increased psychological distress.

Conclusion: The results support the importance of addressing rumination on existential concerns in palliative care because of its association with psychological distress. Rumination was identified as a mechanism that may be important in addressing psychological distress in palliative care.

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Satisfaction with respite care: a pilot study

Satisfaction with respite care may be bound up with a variety of factors. The interaction of social support with ratings of a carer's satisfaction with respite care has not been explored in published work. The present authors postulated that social support, both during caring and during periods of relief from caring whilst in receipt of respite care, would be associated with greater satisfaction with respite care. They embarked upon a pilot study of carers who were looking after dependants with dementia, a particularly demanding form of care. Previously validated scales were used for determining levels of social support, and for assessing possible confounding factors such as carer depression or strain. One hundred and forty carers were contacted, but only 26 completed the questionnaires. In terms of perceived benefit to the carer, satisfaction was high (rating scale = 1–7, mean = 5.8, mode = 7) and correlated significantly with the numbers of people in the social support network (r = 0.57, P = 0.002), albeit not with any of the four measured types of support which they may have provided. Carer satisfaction was not significantly correlated with carer strain nor depression scores. Regression analysis demonstrated that 17% of the variance in this satisfaction score was accounted for by the numbers in the social support network. Other factors did not significantly explain the observed variation.

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Caregiver burden in family carers of people with dementia with Lewy bodies and Alzheimer's disease

Objective: To characterise the differences in caregiver distress between carers of people diagnosed with dementia with Lewy bodies (DLB) and people with Alzheimer's disease (AD), with a view to differentiating and improving support for caregivers. Methods: This study is a part of two larger Norwegian studies, DemVest (n = 265) and The Norwegian Dementia Register (n = 2220), with data from caregivers and people diagnosed with AD (n = 100) and DLB (n = 86) between 2005 and 2013. The average age was 74.9 years (SD = 7.8). Caregiver distress was rated by the Relative Stress Scale. Diagnosis of the person receiving care was based on a comprehensive standardised assessment program (International Classification of Diseases, Revision 10 or Diagnostic and Statistical Manual for Mental Disorders, fourth edition). Additional data collected from people receiving care were neuropsychiatric symptoms, comorbidity and activities of daily living (ADL) score. Linear regression analyses were applied, first unadjusted and then in stepwise-adjusts in addition to descriptive analyses. Results: Caregivers to people with AD (20.2%) and 40% of caregivers for people with DLB experienced moderate or high caregiver burden with an increased risk of psychiatric disorders in the early stage of dementia. High Relative Stress Scale (RSS) total scores in caregivers was significantly associated with neuropsychiatric symptoms (Neuropsychiatric Inventory, p = 0.004) and also with impaired ADL functioning (Rapid Disability Rating Scale-2, p < 0.0005). Conclusion: Caregiver distress differed (RSS total, p = 0.005) between people caring for someone with AD (15.0) and those caring for someone with DLB (19.9). These findings have direct implications for the needs and resources that could be available for these individuals and indicate the need for further research into caregiver burden in carers to people with DLB. Copyright © 2016 John Wiley & Sons, Ltd. Ethics and dissemination: Cohorts were ethically approved by the Regional Ethics Committee for Medical Research Ethics in Eastern and Western Norway.

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Children and young people as active agents in care-giving: Agency and constraint

This paper envisions children and young people who provide informal care to family members with illness or disability as active agents within the care relationship, whilst emphasising that this agency operates within constraints. These constraints include familial and kinship obligations, socio-economic and demographic circumstances and policy and service constraints. This paper examines the costs incurred and benefits conferred by young people who provide care. It presents the findings from an analysis of Australian national data on young people who provide informal care. It also presents some findings from focus groups conducted with young people involved in informal care-giving. The paper concludes with a discussion of the policy implications of the research. [Copyright Elsevier B.V.]

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A dimensional analysis of caregiver burden among spouses and adult children

Purpose of the study: Caregiver burden is a multidimensional construct, addressing tension and anxiety (stress burden), changes in dyadic relationships (relationship burden), and time infringements (objective burden) resulting from caregiving. The study aims were to assess (a) whether the dimensions of burden were the same for caregiving spouses and adult children, (b) the role of assisting with problem behaviors (PBs) and activities of daily living (ADLs) on each dimension of burden, and (c) the role of each dimension of burden on self-rated health and intention to institutionalize the care receiver. Design and Methods: This study included 280 spouse/partner and 243 adult child caregivers of persons with chronic illnesses. Results: Analysis using 2-group structural equation modeling showed that the factor structure of burden was equivalent for spouses and adult children. For both groups, assisting with ADLs was directly related with objective burden, whereas PBs were directly related to all dimensions of burden. For both groups, stress burden was the only predictor of self-rated health, whereas PBs were significantly linked with intention to institutionalize. However, stress burden among spouses and relationship burden among adult children were significantly linked with intention to institutionalize. Implications: We discuss the research and practice implications of the differing needs of spouses and adult children.

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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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Coping with caring: profiles of caregiving by informal carers living with a loved one who has dementia

Background and aim: While the number of people suffering from dementia in the Netherlands will double in the next 25 years, there are no plans to expand the capacity of residential care facilities for these patients. This will almost inevitably lead to an increase in the burden placed on informal carers. We investigated how caregivers living with a loved one who has dementia experience their caregiving situation.

Methods: For this study, 53 caregivers ranked a structured set of opinion statements covering a representative range of aspects of caregiving. By-person factor analysis was used to uncover patterns in the rankings of statements.

Results: Five distinct profiles of caregiving were identified that provide information on the various care situations that can occur, the needs and dilemmas that these caregivers face, and the subjective burden and perseverance time of the carers.

Conclusions: The findings contribute to the development of interventions for the support of informal caregivers.

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Further exploration of the Young Carers Perceived Stress Scale: identifying a benefit-finding dimension

Objectives: A substantial number of children are involved in informal caregiving and make a significant contribution to health care delivery. While this places high levels of demand on their coping resources, there is some evidence that these children find benefit in their caring role. The Young Carers Perceived Stress Scale (YCPSS) (Early et al., 2006, JChild FamStud., 15, 169) identified a positive dimension of caring, which appears to have potential in terms of measuring benefit finding in this group. The current study aimed to further explore YCPSS to clarify this dimension.

Design: A survey design using questionnaire data collection was used with a sample of 329 children between the ages of 12 and 16.

Methods: A pool of 52 items based on the YCPSS was administered along with measures of support, coping, and psychological distress to 329 young carers attending organized support groups.

Results: Factor analysis with maximum likelihood extraction identified six factors including one 8-item dimension labelled benefit finding, which had good internal reliability and produced a pattern of correlations with support, coping, and psychological distress indicating initial evidence of validity.

Conclusions: The study produced initial evidence for reliability and validity of an 8-item benefit-finding measure, as well as a clearer set of dimensions for the original YCPSS. The resulting measures should prove useful in further explorations of benefit finding and resilience in young carers.

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Distressed fathers and their children: A review of the literature

Background: Many men diagnosed with mental health problems are also fathers. This literature review addresses issues relating to both the fathering role taken on by men who have mental health problems as well as the impact of their mental health on their children. Material: An integrative review of the literature was conducted from studies originating in four countries, resulting in an analysis of 31 journal articles. Discussion and conclusions: Most of the quantitative literature focuses on the many risks and negative outcomes for children. However, qualitative studies suggest positive outcomes such as strong parent-child relationships, which demand further attention both in research and in practice. [Reprinted by permission of Sage Publications Ltd., copyright holder.]

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Psychosocial factors affecting hip fracture elder's burden of care in Taiwan

OBJECTIVE: The aim of this study was to analyze the factors that affect the burden of care for primary caregivers of older people during the transition period after discharge from the hospital to home.

METHODS: Using convenience sampling, 95 older patients who had been hospitalized for a hip fracture and their primary caregivers were enrolled. Data pertaining to the burden experienced by the caregivers were collected 1 week and 1 month after discharge from the hospital.

RESULTS: The burden of care was characterized as moderate. Physical functioning of the older people improved gradually with time after discharge from hospital (F = 164.582, p < .001) and were negatively related to caregiver burden. The predictive factors for caregiver burden 1 week after hospital discharge included the older people's physical functioning and self-efficacy, which together contributed to 15.6% of the total variance in caregiver burden. The predictive factors for caregiver burden 1 month after hospital discharge were the degree of caregiver burden at 1 week and social support, which together contributed to 56.0% of the total variance in caregiver burden.

CONCLUSION: A health education program should be designed to improve the primary caregiver's knowledge of providing care and suggest strategies to increase social support to reduce the overall burden of care.

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A review of research outcomes in elder abuse

Provides a commentary on research outcomes in the field of elder abuse and challenges assumptions about older people, carers, vulnerability and risk.

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Worried sick: the emotional impact of cancer

Macmillan Cancer Support’s Worried Sick report presents a summary of the findings of a major quantitative survey conducted by Opinion Leader Research (OLR). The survey explores the impact of a cancer diagnosis on the lives of both people with cancer (who have received the diagnosis) and people affected by cancer (family members and friends who often help them cope with their cancer experience). Specifically our research objectives were to examine the impact of a cancer diagnosis on: • Living with cancer every day, including people’s experience of the cancer information and support system and the physical impact of cancer • People’s emotional well-being and relationships • People affected by cancer (informal carers, who may be a relative or friend) The research also aimed to establish any differences between the views and experiences of people living with or affected by cancer, and those who had never been affected by the disease.

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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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Assessing needs from patient, carer and professional perspectives: the Camberwell Assessment of Need for Elderly people in primary care

Background: despite evidence that needs assessment of older people can improve survival and function when linked to effective long‐term management, there is no structured needs assessment tool in widespread use. The Camberwell Assessment of Need for the Elderly is a new tool not previously evaluated in primary care. It includes the views of patients, carers and health professionals, enabling a direct comparison of their perspectives.

Aim: to conduct a feasibility study of Camberwell Assessment of Need for the Elderly in primary care and to compare the needs identified by patients, carers and health professionals.

Methods: we selected a random sample of 1:20 of all people aged 75 and over from four general practices in inner‐city and suburban north‐west London. We interviewed the patients, their informal carers and lead health professionals using the Camberwell Assessment of Need for the Elderly schedule.

Results: 55 (65.5%) of 84 patients, 15 (88.2%) of 17 carers and all of 55 health professionals completed interviews. The patients' three most frequently identified unmet needs were with ‘eyesight/hearing’, ‘psychological distress’ and ‘incontinence’. The carers' three most frequently identified unmet needs were with ‘mobility’, ‘eyesight/hearing’ and ‘accommodation’ and the health professionals' were with ‘daytime activities’, ‘accommodation’ and ‘mobility’. κ tests comparing patient and health professional assessments showed poor or fair agreement with 18 of the 24 variables and moderate or good agreement with six. None showed very good agreement.

Conclusion: the Camberwell Assessment of Need for the Elderly schedule is feasible to use in primary care and can identify perceived needs not previously known about by health professionals. A shorter version of Camberwell Assessment of Need for the Elderly focusing on areas of poor agreement and high levels of need might be useful in the assessment of needs in older people in primary care.

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Evercare study: More Hours Spent Caregiving Equated with Greater Decline

Previous studies have shown that caregivers spend on average 4.5 years caregiving, with the needs escalating over time, thus impacting caregiver health significantly over that period (Caregiving in theU.S., AARP and National Alliance for Caregiving). The Evercare study revealed that the more time caregivers spend caring for a loved one, the greater their health decline. This is even more true for those caregivers providing a higher level intensity of caregiving such as giving medications or injections, bathing, feeding, dressing or other activities of daily living. Caregivers who reported their health got a lot worse as result of caregiving (15%) spend an average of 58 hours a week caregiving and those with a moderate deterioration in health (44 percent) spend an average of 42 hours a week caregiving.

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The Carer Support Needs Assessment Tool (CSNAT) for Use in Palliative and End-of-life Care at Home: A Validation Study

Context. Family carers need to be supported in their central role of caring for patients at the end of life, but brief practical tools to assess their support needs have been missing. To address this gap, we developed a brief evidence-based Carer Support Needs Assessment Tool (CSNAT) suitable for everyday practice. Objectives. To assess face, content, and criterion validity of the CSNAT and measure sensitivity to change over time. Methods. Participants were 225 adult carers of patients from six U. K. Hospice Home Care services. Carers were surveyed at baseline and at four-week follow-up using self-completed questionnaires, including CSNAT, standard measures (distress, strain, positive appraisals, preparedness, and global health), help provided with activities of daily living, and patients' symptom levels. Qualitative feedback on CSNAT was sought through 10 pilot carer interviews and professional and carer advisory group input. Results. The CSNAT has good face, content, and criterion validity. CSNAT domains comprehensively covered carer support needs. CSNAT scores showed clear and consistent positive correlations with strain and distress and negative correlations with preparedness for caregiving and global health. There also were clear correlations with help with activities of daily living and some relationships with positive appraisals and symptom burden. The CSNAT's sensitivity to change in relevant domains was similar to other measures. Conclusion. The CSNAT is a valid tool for the direct measurement of carers' support needs. It combines comprehensiveness of content with feasibility of administration and has utility both as a research tool and a tool for everyday palliative care practice.

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A stress-busting program for family caregivers

Aging baby boomers, longer life spans, and rising levels of Alzheimer's disease and related dementias (ADRD) will result in a caregiver crisis in the near future. The ways in which caregivers deal with stresses related to caregiving will be critical to both their own well-being and their ability to care for others. The purpose of this article is to describe the Stress-Busting Program (SBP) for family caregivers and its effectiveness. The essential components of the SBP are education, stress management, problem solving, and support delivered in a group setting for 9 weeks. Results of the SBP indicate that throughout the program, caregivers experienced significant improvements in general health, vitality, social function, and mental health scores and decreases in anxiety, anger/hostility, depression, perceived stress, and caregiver burden. The SBP is a cost-effective health-promotion strategy for caregivers who have substantial ongoing stress.

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Reasons of informal caregivers for institutionalising dementia patients previously living at home: the Pixel study

Context: Study of the problems and requirements of the main caregiver providing home care for dementia patients that have resulted in the patient being institutionalised.

Objectives: To determine the reasons for placing the dementia patient in an institution.

Resources: Self-administered questionnaire of 48 questions on the patient and caregiver, including a list of complaints, given to the main caregiver. Medical questionnaire on the patient filled in by the geriatrician.

Results: Data were collected from 109 questionnaires concerning 75 females with dementia (84.7 ± 6.7 years) and 34 demented males (80.8 ± 7.4 years). In two-thirds of cases the main caregiver was a female, aged 61.1 ± 12.1 years. Cognitive disorders were not the main reasons for institutionalising patients. The most frequent caregiver complaint at the time of institutionalisation was incontinence, followed by withdrawal. The caregiver's main problem resulting in institutionalisation was dependence, with behavioural disorders in second place. A treatment with anticholinesterase for dementia was associated with a live-in carer being provided for 20 months longer than in the case of patients not receiving this treatment. Statistical analysis revealed 6 groups of separate caregiver-patient situations. On the one hand there were those patients who appeared to be easy for the caregiver to cope with: those with no problems, docile patients and passive patients not opposing care. In these cases the caregiver was most often young and male, or not directly related to the patient. On the other hand there were 3 other groups: patients with inappropriate motor behaviours, violent/agitated patients and unmotivated patients who opposed care. These patients lived with an elderly caregiver who had been looking after the patient for several years.

Discussion: Caregivers' requirements are for help with coping with and preventing dependence. The caregiver suffers terribly from a lack of relief, particularly when young.

Conclusion: It is necessary to change the focus of home care for dementia patients towards preventing loss of autonomy and its consequences and to allow for periods of relief for home caregivers. Copyright © 2004 John Wiley & Sons, Ltd.

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A warm welcome

A £1.54 million grant will enable another 70 children in Wales to access short breaks. However, there are 460 children in Wales still waiting for short breaks – and many more who are not even on a waiting list. This money is a good starting point and it is hoped a down payment for the future development of short break services in Wales. More carers will be needed to meet the increased demand, and the DVD has come at the right time to inspire new short break carers.

The impact of caring for an adult with intellectual disability and psychiatric comorbidity on carer stress and psychological distress

Background: Given that carers of individuals with intellectual disability (ID) and carers of individuals with psychiatric disorders experience elevated levels of stress and psychological distress, carers of individuals with both ID and a comorbid psychiatric disorder are potentially at even greater risk for psychological difficulties. The aim of the present study was to investigate the psychological well-being of carers of adults with a dual diagnosis compared with carers of adults with intellectual disability alone.

Method: Four-hundred and forty-two questionnaires were sent to four community services and seventy-five family carers of adults with intellectual disability responded. Psychological well-being of carers was assessed using the Questionnaire on Resources and Stress – Friedrich edition (QRS-F) and the General Health Questionnaire (GHQ). Comorbid psychopathology for their family member with ID was assessed using the Reiss Screen for Maladaptive Behaviour (RSMB).

Results: Twenty-four percent of the individuals with ID were reported to have comorbid psychopathology. Between-group analyses compared carers of people with ID and comorbid psychopathology to carers of people with ID alone. Regression analyses examined the relationship between psychopathology and other care-related variables to carer stress and psychological distress. Carers of people with ID and comorbid psychopathology were found to have significantly higher levels of stress and psychological distress than carers of people with ID alone. Autism was found to be the only significant predictor of both stress and psychological distress among measures of psychopathology.

Conclusions: Additional comorbid psychopathology in individuals with intellectual disability has a significant impact on their carers’ psychological well-being.

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Work, gender, and stress in family cancer caregiving

Goals of work: The objective of this study was to examine whether employment status and gender was associated with family cancer caregivers’ reports of stress and well-being.

Materials and methods: Using a correlational, cross-sectional survey design, this study included 183 primary caregivers (i.e., those individuals who provided the most help to persons with cancer). Caregivers were recruited in a radiation oncology cancer clinic and were administered detailed interviews that collected a wide range of information about the stress process.

Results: Bivariate and multivariable analyses suggested a number of differences between various classifications of employment status and gender. In particular, women who worked appeared more likely to provide instrumental care to the person with cancer when compared to men who did or did not work. In addition, women who worked were more likely to report feelings of exhaustion and fatigue when compared to men who worked.

Conclusions: The results emphasize the need to consider the context of cancer care when analyzing the stress process. When faced with employment, women appear particularly at risk for emotional distress and greater perceived care demands. Utilizing tools that identify cancer caregivers at risk based on work, gender, or other contextual variables may inform the development and targeting of clinical interventions for this population.

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Multicenter randomized controlled trial of an outreach nursing support program for recently discharged stroke patients

Background and Purpose— Many stroke patients and informal carers experience a decreased quality of life after discharge home and are dissatisfied with the care received. We assessed the effectiveness of an outreach nursing care program.

Methods— In a multicenter trial, 536 stroke patients were randomized at discharge to standard care (n=273) or standard care plus outreach care (n=263). The outreach care consisted of 3 telephone calls and 1 home visit within 5 months after discharge by 1 of 13 stroke nurses. Patients were masked for the trial objectives. Six months after discharge, they assessed the 2 primary outcomes: quality of life (Short Form 36 [SF-36]) and dissatisfaction with care. Secondary measures of outcome were disability, handicap, depression, anxiety, and use of health care services and secondary prevention drugs. Informal carers assessed strain, and social support. Analysis was by intention to treat.

Results— Twelve patients died before follow-up, 38 declined outcome assessment, and 486 completed the primary outcome assessments. Outreach care patients had better scores on the SF-36 domain “Role Emotional” than controls (mean difference 7.9 [95% confidence limit, 0.1 to 15.7]). No statistically significant differences were found on the other primary outcome measures. For secondary outcomes, no statistically significant differences were found, except that intervention patients used fewer rehabilitation services (relative risk, 0.66 [0.44 to 1.00]) and had lower anxiety scores (median difference 1 [0.19 to 2.79]).

Conclusions— This outreach nursing stroke care was not effective in improving quality of life and dissatisfaction with care of recently discharged patients.

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Carers’ perspectives on the internet: implications for social and health care service provision

To date, little is known about carers’ experience of using online services and informa­tion. Data are reported from the Carers Online national postal survey of 3,014 adult carers and from an assisted access study involving 60 other adults who had been given training and cost-free Internet access at home. Half of the survey respondents reported having used the Internet on at least one occasion for a range of purposes related to both caring and other aspects of their lives. Major barriers to use identified by both users and non-users included lack of access to equipment and the Internet, difficulties with equipment and systems, cost, limitations on time, and lack of interest and skill. Fourteen per cent of the whole sample said that nothing would encourage them to use the Internet. All of the assisted access group used the Internet for a similarly wide range of purposes. Key benefits identified included convenience, flexibility, speed and range of information available, while problems with equipment and systems and time constraints were major barriers to effective Internet use. Findings suggest that while direct Internet access has some benefits for some carers, it should currently be only one of a range of ways of meeting their information needs.

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Evaluation of informal carers of persons with dementia

Caring for an older adult with dementia at home, is a complex process that creates chronic stress, affecting to a greater or lesser degree the physical and mental health of caregivers, so the evaluation of objective and subjective burden, as well as stressors and ways to tackle them, should not be absent in the Occupational Therapy evaluation, not to mention the family member-caregiver dyad. The preliminary results of the stage of reality immersion, have allowed constituting a sample which initiates the collection of data through in depth interviews and life histories.

Supporting carers to care in a crisis: an analysis of additional service provision essential to carers of people with learning disabilities

Research into how unpaid carers for people with learning disabilities cope with 'crisis' in their lives and the lives of those they care for was commissioned by Gwalia Housing in Wales. Twenty four carers who had experienced a crisis situation were interviewed. Although carers feedback found great variation in carers experience and definitions of crisis, the most frequent theme was that a crisis was something that stopped carers carrying out their duties. Carers were also asked about their experience of services and how they could help in crisis. The article concludes with a number of recommendations for practice.

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The role of the home-care worker in palliative and end-of-life care in the community setting: a literature review

The majority of people would prefer to die at home if assured of high quality care and proper support for their families and informal carers. Home-care workers play a vital role in enabling patients to be cared for in their own homes; however, there is a lack of research on their role, focusing specifically on palliative and end-of-life care. A broad literature search was undertaken as part of a research study to explore the role of home-care workers in palliative and end-of-life care in the community. Key questions for the review included: exploring the role of home-care workers; factors that affect this role and examining training and support needs of home-care workers in providing palliative: and end-of-life care in the community. Positive aspects of their contribution were identified in terms of providing physical and social support, and having a key role to play in caring for patients at home. However, several studies highlighted negative aspects of the role, including limited availability of services, lack of continuity of care, time constraints, lack of flexibility and poor quality of communication with other services.

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The hospice caregiver support project: providing support to reduce caregiver stress

Introduction: The vast majority (80%) of care provided to hospice patients is given by informal and unpaid caregivers, who are often family members. They may be responsible for everything from management of the household and finances to medical and personal care. Providing this kind of care to a loved one at the end of life can contribute to increased stress, health problems, and decreased quality of life.

Methods: Hospice social workers referred caregivers identified as needing additional support into a special project that funded services not covered by hospice and that the family could not afford to purchase. There were no restrictions on the types of services that could be requested. The Pearlin role overload measure (ROM) was administered and the family selected a service provider from an approved list of agencies. Upon completion of the service period, the ROM was re-administered. Use of the hospice respite benefit by any hospice patient during this study was compared with use before the project began.

Results: Self-reported caregiver stress, as measured by the Pearlin ROM pre- and post-services, decreased by 52% (t122 = 10.254; p < 0.0001). Use of the hospice respite benefit requested by any hospice patient caregiver decreased during the project period (χ2, p < 0.02), and when respite was requested fewer days were used as compared with the same time period prior to the project (χ2, p < 0.0043).

Conclusion: The project results show that offering such services relieved caregiver stress, reduced use of respite, and reduced the number of respite days used.

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The emotional costs of caring incurred by men and women in the British labour market

This study investigates whether men and women in caring occupations experience more negative job-related feelings at the end of the day compared to the rest of the working population. The data are from Wave Nine of the British Household Panel Survey (1999) where respondents were asked whether, at the end of the working day, they tended to keep worrying or have trouble unwinding, and the extent to which work left them feeling exhausted or “used up.” Their responses to these questions were used to develop ordinal dependent variables. Control variables in the models include: number of children, age, hours worked per week, managerial responsibilities and job satisfaction, all of which have been shown in previous research to be significantly related to “job burnout.” The results are that those in caring occupations are more likely to feel worried, tense, drained and exhausted at the end of the working day. Women in particular appear to pay a high emotional cost for working in caring occupations. Men do not emerge unscathed, but report significantly lower levels of worry and exhaustion at the end of the day than do women.

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Caring Situation, Health, Self-efficacy, and Stress in Young Informal Carers of Family and Friends with Mental Illness in Sweden

This study compared the caring situation, health, self-efficacy, and stress of young (16-25) informal carers (YICs) supporting a family member with mental illness with that of YICs supporting a friend. A sample of 225 carers, assigned to a family group (n = 97) or a friend group (n = 128) completed the questionnaire. It was found that the family group experiences a lower level of support and friends experienced a lower positive value of caring. No other differences in health, general self-efficacy and stress were found. YICs endure different social situations, which is why further study of the needs of YICs, especially those supporting friends, is urgently needed.

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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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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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Correlates of stress in carers

BACKGROUND: Mental health services are required to take account of the needs of carers, yet little is known about how services affect carers.

AIMS: This paper explores the relationship between the user's mental health problems, the services received and the impact of caring on carers.

METHODS: Sixty-four carers were interviewed, measuring their experiences of care-giving, carer stress and the service user's level of impairment. A robust, composite measure of user severity was derived.

RESULTS: Carers were sometimes better judges than care co-ordinators of user impairment. Their experience reflected the independently rated severity of service users' problems. When carers were aware of care plans, they felt less negative about caring. Even in above-average mental health services, carers lacked information about: care plans, medication and complaints procedures.

CONCLUSIONS: This evidence can be used in allocating resources such respite care, family therapy and CBT to carers. These findings have implications for how mental health services might improve their provision for carers, for instance, involvement in care planning may help carers to cope.

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Distress relief

Reports on research from the Social Policy Research Unit (SPRU) designed to measure and monitor health inequalities between carers and noncarers. The study used data from the British Household Panel Survey (BHPS) covering the period from 1991 to 2000. Results found that emotional and mental health problems are more often associated with caregiving than physical health problems

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A multi-centre survey among informal carers who manage medication for older care recipients: problems experienced and development of services

The UK Government has highlighted the need to develop appropriate information and support services for informal carers. Previous research that has investigated informal caring has found that managing medication is one aspect of the caring role that presents its own problems; however, these have not been subject to detailed examination. The objective of the present paper was to report the number and type of problems experienced by informal carers when managing medication for older care recipients, and to relate these to measures of coping and health. This was a cross-sectional survey undertaken in one district in each of four randomly selected health authority areas in England. Structured interviews, comprising closed and open questions, with 184 informal carers and 93 associated older care recipients were conducted in participants' own homes. Data were gathered on the number and type of medication-related problems experienced in relation to the informal caring role, and the impact of these from carers' perspectives in terms of coping and health. Sixty-seven per cent of carers reported problems with at least one medication-related activity. Problems were associated with all types of medication-related activities, and experienced by carers providing different levels of care for older people. Four themes were identified from carers' accounts which illustrated a diversity of practical problems and anxieties: maintaining continuous supplies of medication in the home; assisting with administration; making clinical judgements; and communicating with care recipients and health professionals. Carers reporting greater numbers of medication-related problems were more likely to experience higher levels of carer strain (P < 0.001) and poorer mental health status (P < 0.001). The findings of the present study provide insights to inform the development of primary care services to support informal carers in the management of medication for older people.

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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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Is Policy Well-Targeted to Remedy Financial Strain among Caregivers of Severely Injured US Service Members?

US. military service members have sustained severe injuries since the start of the wars in Iraq and Afghanistan. This paper aims to determine the factors associated with financial strain of their caregivers and establish whether recent federal legislation targets caregivers experiencing financial strain. In our national survey, 62.3% of caregivers depleted assets and/or accumulated debt, and 41% of working caregivers left the labor force. If a severely injured veteran needed intensive help, the primary caregiver faced odds 4.63 times higher of leaving the labor force, and used $27,576 more in assets and/or accumulated debt compared to caregivers of veterans needing little or no assistance.

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Posttraumatic stress disorder, depression, executive functioning, and autobiographical remembering in individuals with HIV and in carers of those with HIV in Iran

Two studies examined autobiographical remembering in those with HIV (Study 1) and in carers of those with HIV (Study 2) in Iran. Study 1 investigated posttraumatic stress disorder (PTSD) and depression symptoms, executive control, and autobiographical remembering in those with HIV. Individuals with HIV (n = 34) and healthy controls (n = 34) completed the Impact of Event Scale-Revised, Beck's Depression Inventory-II, Beck's Anxiety Inventory, Autobiographical Memory Interview, Autobiographical Memory Test, Wisconsin Card Sorting Test, and Tower of London. The results indicated higher PTSD and depression symptoms among the HIV group. The findings also showed that those with HIV had lower levels of executive functioning, deficits in autobiographical remembering (semantic and episodic) and retrieved less specific autobiographical memories than the control group. Study 2 examined depression, executive functioning, and autobiographical memory performance among carers of those with HIV (n = 26) and healthy controls (n = 26). The same measures were completed as in Study 1. The results indicated higher depression among the carers group but the groups did not differ in terms of executive functioning or semantic recollection. The carers had lower episodic recall scores and less specific memories than the control group. The findings are discussed in terms of the processes involved in nonspecific retrieval of autobiographical material in relation to HIV.

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Alzheimer's disease: the psychological and physical effects of the caregiver's role, part 2

The purpose of this study was to investigate the physical and psychological effects on informal caregivers of looking after a person with Alzheimer’s disease. A descriptive survey was conducted in counties Galway, Mayo and Roscommon in Ireland using a simple random sample of caregivers registered with the Alzheimer Society of Ireland, Galway, or the Western Alzheimer’s Foundation. The findings from the study show that a significant proportion of caregivers reported poor self-rated health and depression. Restless sleep and a decreased tolerance for pain were also common.

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Breaking point: a report on caring without a break for children and adults with severe or profound learning disabilities

Mencap’s 2003 Breaking Point report identified the appalling situation faced by the majority of families caring for children and adults with severe and profound learning disabilities. Despite highlighting the issues with central and local government at every opportunity, Mencap continues to meet families pushed to breaking point. We have revisited the issues in this report, as we have come across many more stories of families who are still not getting the short break they need. We can confirm that, sadly, nothing has really changed. From May to July 2006 we followed up our work with a survey of 353 families in six local authority areas in England1 and throughout Northern Ireland to find out about the short breaks they get and need. This report tells the shocking stories of families still being denied the right to a family life due to a continuing lack of short breaks. Families are still left to reach breaking point, experience ill health and lead diminished lives as short break services are not being provided to help them care for their sons and daughters. 

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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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The impact of organisational culture on the delivery of person-centred care in services providing respite care and short breaks for people with dementia

Ensuring the development and delivery of person-centred care in services providing respite care and short breaks for people with dementia and their carers has a number of challenges for health and social service providers. This article explores the role of organisational culture in barriers and facilitators to person-centred dementia care. As part of a mixed-methods study of respite care and short breaks for people with dementia and their carers, 49 telephone semi-structured interviews, two focus groups (N= 16) and five face-to-face in-depth interviews involving front-line staff and operational and strategic managers were completed in 2006-2007. Qualitative thematic analysis of transcripts identified five themes on aspects of organisational culture that are perceived to influence person-centred care: understandings of person-centred care, attitudes to service development, service priorities, valuing staff and solution-focused approaches. Views of person-centred care expressed by participants, although generally positive, highlight a range of understandings about person-centred care. Some organisations describe their service as being person-centred without the necessary cultural shift to make this a reality. Participants highlighted resource constraints and the knowledge, attitudes and personal qualities of staff as a barrier to implementing person-centred care. Leadership style, the way that managers' support and value staff and the management of risk were considered important influences. Person-centred dementia care is strongly advocated by professional opinion leaders and is prescribed in policy documents. This analysis suggests that person-centred dementia care is not strongly embedded in the organisational cultures of all local providers of respite-care and short-break services. Provider organisations should be encouraged further to develop a shared culture at all levels of the organisation to ensure person-centred dementia care.

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Grandmothers and caregiving to grandchildren: continuity, change, and outcomes over 24 months

Purpose: Transitions in caregiving, such as becoming a primary caregiver to grandchildren or having adult children and grandchildren move in or out, may affect the well-being of the grandmother. Design and Methods: This report describes caregiving patterns at 3 time points over 24 months in a sample of 485 Ohio grandmothers and examines the effects of stability and change in grandmother caregiving roles (raising a grandchild, living in a multigenerational home, or not caregiving to grandchildren). Drawing on the Resiliency Model of Family Stress, the study examined caregiving stress and reward, intrafamily strain, social support, resourcefulness, depressive symptoms, mental and physical health, and perceived family functioning. Caregiver group, time of measurement, switching between caregiver groups, and baseline age, race, education, work status, and marital status were considered as independent variables within the context of a one-way treatment structure in a mixed-model multivariate analysis. Results: There were significant caregiver group effects for all variables, except mental health and resourcefulness. Grandmothers raising grandchildren reported the most stress, intrafamily strain, and perceived problems in family functioning, the worst physical health and more depressive symptoms, and the least reward and subjective support. Across groups, there were significant time effects, with worsening physical health and increased stress over time. Switching to higher levels of caregiving was associated with worsening physical health and increases in stress, intrafamily strain, and perceived problems in family functioning. Implications: Recommendations for research and for practice, especially during times of caregiving transition or for grandmothers raising grandchildren, are discussed.

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'He stopped being my husband and became my carer'

Outlines ongoing research into the way care in mental health is constructed by professionals in law and policy, and the impact of those constructions for people who find themselves identified as 'carer' or 'cared for'. The research also looks at how people construct and experience care within their partnerships.

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Perceptions of the role of general practice and practical support measures for carers of stroke survivors: a qualitative study

Background: Informal carers frequently suffer adverse consequences from caring. General practice teams are well positioned to support them. However, what carers of stroke survivors want and expect from general practice, and the practical support measures they might like, remain largely unexplored.

The aims of this study are twofold. Firstly it explores both the support stroke carers would like from general practice and their reactions to the community based support proposed in the New Deal. Secondly, perceptions of a general practice team are investigated covering similar topics to carer interviews but from their perspective.

Methods: Semi-structured interviews were conducted with 13 stroke carers and 10 members of a general practice team. Carers' experiences and expectations of general practice and opinions of support measures from recent government policy were explored. General practice professionals were asked about their perceived role and their perceptions of carers' support needs. Interviews were content analysed.

Results: Carers' expectations of support from general practice were low and they neither received nor expected much support for themselves. General practice was seen as reactive primarily because of time constraints. Some carers would appreciate emotional support but others did not want additional services. Responses to recent policy initiatives were mixed with carers saying these might benefit other carers but not themselves.

General practice professionals' opinions were broadly similar. They recognise carers' support needs but see their role as reactive, focussed on stroke survivors, rather than carers. Caring was recognised as challenging. Providing emotional support and referral were seen as important but identification of carers was considered difficult. Time constraints limit their support. Responses to recent policy initiatives were positive.

Conclusions: Carers' expectations of support from general practice for themselves are low and teams are seen as reactive and time constrained. Both the carers and the general practice team participants emphasised the valuable role of general practice team in supporting stroke survivors. Research is needed to determine general practice teams' awareness and identification of carers and of the difficulties they encounter supporting stroke carers. Carer policy initiatives need greater specificity with greater attention to diversity in carer needs.

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The Impact of Caring on Informal Carers' Employment, Income and Earnings: a Longitudinal Approach

In Australia the policy balance has shifted away from institutional forms of health and aged care towards supporting people in their own homes. This change presupposes a significant and growing supply of informal caring labour. A large proportion of informal carers (40–60 per cent) currently combine paid employment with their caring responsibilities. Using the longitudinal Household, Income and Labour Dynamics in Australia Survey, the paper examines the effect of caring on employment, hours worked and earnings. The analysis shows that working age carers experience disadvantage. Carers are more likely than non-carers to reduce their hours of work or exit from the labour force, and earn lower levels of income. In planning for an ageing population, policies will need to address these negative effects and privatised costs of caring if the supply of informal care is to be sustained in the future.

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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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Systematic Review and Meta-Analysis of the impact of carer stress on subsequent institutionalisation of community-dwelling older people

Background: In the caregiving literature there is a common assertion that a higher level of carer stress is a critical determinant of premature ending of homecare. However, this contention has not been systematically assessed. We therefore systematically reviewed and meta-analysed the prospective association between various forms of carer stress and subsequent institutionalisation of community-dwelling older people.

Methods: Systematic literature search of prospective studies measuring carer stress at baseline and institutionalisation at follow-up. Given substantial interchangeability in the measurement of carer stress, we included a wide number of exposure measures, namely: carer stress, burden, depression, distress, anxiety, burnout, and strain. Institutionalisation included both acute and long-term care utilisation. The standardised mean difference between stressed and non-stressed carers was the primary measure of effect. We assessed study quality with the Crowe Critical Appraisal Tool (CCAT). Pre-planned sensitivity analysis included examination of estimates according to study size; decade published; study quality according to quartiles of CCAT scores; population; follow-up period; study design and impact of adjusted or unadjusted estimates.

Results: The search yielded 6,963 articles. After exclusions, we analysed data from 54 datasets. The meta-analysis found that while carer stress has a significant effect on subsequent institutionalisation of care recipients, the overall effect size was negligible (SMD=0·05, 95% CI=0·04–0·07). Sensitivity analyses found that, the effect size was higher for measurements of stress than for other measures, though still relatively small (SMD=0·23, 95% CI=0·09–0·38). Thus, whether analysing the association between carer stress, burden, distress, or depression with either acute or long-term care, the effect size remains small to negligible. Concurrently, we found estimates reduce over time and were smaller with larger studies and those of higher quality, according to the CCAT scores.

Conclusion: Despite strong statements to the contrary, it appears that the effect of carer stress on subsequent care recipient institutionalisation is small to negligible. The current findings point to a biased literature, with significant small study effects. The results suggest a need to re-evaluate the degree to which carer stress predicts premature ending of home care. Concurrently, other factors may be more crucial in institutional placement than carer stress and should be investigated

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Global Perspectives on Children's Unpaid Caregiving in the Family

This article provides the first cross-national review and synthesis of available statistical and research evidence from three developed countries, the UK, Australia and the USA, and from sub-Saharan Africa, on children who provide substantial, regular or significant unpaid care to other family members ('young carers/caregivers'). It uses the issue of young carers as a window on the formulation and delivery of social policy in a global context. The article examines the extent of children's informal caregiving in each country; how young carers differ from other children; and how children's caring has been explained in research from both developed and developing countries. The article includes a review of the research, social policy and service developments for young carers in each country. National levels of awareness and policy response are characterized as 'advanced', 'intermediate', 'preliminary' or 'emerging'. Explanations are provided for variations in national policy and practice drawing on themes from the globalization literature. Global opportunities and constraints to progress, particularly in Africa, are identified. The article suggests that children’s informal caring roles in both developed and developing nations can be located along a ‘caregiving continuum’ and that young carers, globally, have much in common irrespective of where they live or how developed are their national welfare systems. There is a need in all countries for young carers to be recognized, identified, analysed and supported as a distinct group of ‘vulnerable children’.

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Assessing multiple sclerosis patients' and carers' views of respite care

Background: People with multiple sclerosis (MS) often require full-time care, which may be provided by informal carers. Respite becomes a vital part of carers' lives allowing temporary relief. Little attention in the literature is given to the people who experience respite care. Aim: The aim of this study was to assess the views of respite care by MS patients and their carers. Method: A cross sectional survey was conducted in Northern Ireland, one questionnaire for patients and another for carers. The lists of two long stay respite units provided the sample for the study, from these 96 patients and 96 carers were approached. A total of 70 patients (73%) and 28 carers (29%) responded. Results: Seventy-one percent of patients used respite care to give their carers a break; 64% of carers used respite to relieve stress. More than half, 64% of patients, enjoyed respite; 6% were angry about requiring respite; 57% of carers felt guilty about using respite. Overall, 81% of patients were satisfied with respite. Almost all carers (96%) stated that respite allowed them to continue caring. Conclusions: Both patients and carers felt respite was a positive and necessary form of care. The study did highlight that activities or outings for patients in respite would be welcomed.

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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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One million and counting: the hidden army of young carers in Canada

The term ‘young carer’ refers to those youth under the age of 25 years who provide substantial unpaid support to a family member due to factors including, but not limited to, familial or parental absence, disability, mental health issue(s) or problems with alcohol and/or other drugs. In the UK, national statistics have been integral to tracking the prevalence of young carers while serving as an important tool towards the development of (and justification for) a national legislative framework supporting these youth. In Canada, research and awareness for young carers remains in its infancy and available national datasets have yet to be examined in relation to youths providing unpaid caregiving. As a result, this research provides the first trend analysis of youth-based caregiving in Canada using census data for the 1996–2006 time-period. Methodological limitations of official statistics are also discussed in terms of conceptual and operational constraints limiting the full identification of all those potential young carers.

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Family support for older people in an area of demographic change and policy constraints

This paper introduces the Special Issue of four empirical studies on the provision of family support to older people that have been written members of the Family Support for Older People: Determinants and Consequences (FAMSUP) network. They have in common the use of individual-level data and recognition of the importance of demographic forces, cultural variations and public policy in shaping patterns of elder care. The four papers are also explicitly comparative, and emphasise both between- and within-country differences. The European countries examined by the FAMSUP researchers exhibit several broadly similar demographic trends, but these are superimposed on very different policy regimes. The ‘macro’ focus of much comparative policy-oriented research facilitates the identification and description of population ageing, while illuminating the policy issues raised by demographic change. A macro-focus is also characteristic of much comparative welfare-state analysis. The ‘micro’ orientation of the research presented in this collection typically treats the policy environment as an implicit or residual category. We argue that progress in understanding comparative patterns of elder care, and in developing policy responses to demographic change, will be facilitated through blending the macro and micro perspectives, in which variations in the policy environment are explicitly linked to individual- and family-level behaviour.

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Workplace practices for retaining older hospital nurses: implications from a study of nurses with eldercare responsibilities

Attempts to address the nursing shortage must consider the aging nursing supply and the decreased labour participation among nurses at age 55 and older. Efforts to retain older, experienced nurses have been meagre, and little attention is paid to the role of eldercare in decisions to leave the profession. This pilot study examines current workplace practices that may contribute to early withdrawal of older nurses from the hospital workforce. Interviews with 28 elder caregiving registered nurses and assistive nursing personnel at a New York hospital were conducted. Respondents reported that successful management of their dual roles rests on identifying units and shifts that suit their needs, erecting clear boundaries between home and work, and their love of nursing. `Caregiver-friendly' practices such as creative, flexible scheduling; access to social workers; financial and legal services; and increased awareness among managers about caregiver strains were recommended.

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Rehabilitation of stroke patients needs a family-centred approach

Purpose. To highlight the importance of the spouse in stroke rehabilitation. Stroke not only affects the patients, but also their families, but rehabilitation practice is still primarily focused on the patient only.

Method. Analysis of the position of the spouse and possible consequences of stroke for the spouse, based on the literature.

Results. Three roles of spouses are described: (i) the role of caregiver, as the spouse often provides extensive and comprehensive care for the patient; (ii) the role of client, as this informal care may lead to physical and emotional strain; and (iii) the role of family member, as the stroke affects the interpersonal relationships within the family system, not least the emotional and sexual relationship between the partners. This analysis provides an understanding of problems experienced by spouses as roles conflict and identifies topics for assessment and interventions directed at the spouse in the acute phase, rehabilitation phase and chronic phase of stroke.

Conclusion. We support a family-centred approach in which the strengths and needs of all family members, the patient with stroke included, are considered throughout all phases of the rehabilitation process.

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Models of Earning and Caring: Determinants of the Division of Work

This paper examines possible determinants of models of the division of earning and caring activities in Canadian couples. Using the General Social Survey on Time Use, we identify five models of the division of work: complementary-traditional, complementary-gender-reversed, women's double burden, men's double burden, and shared roles. While the complementary-traditional model is declining, it still represents a third of couples. Women's double burden is the second largest category, representing 27 percent of couples in 2005, with men's double burden representing another 11 percent. The shared roles account for about a quarter of couples. Building on these typologies of earning and caring, we analyze the relative importance of life course, as well as structural and cultural factors as determinants of the division of paid and unpaid work within couples. We find that the complementary-traditional and women's double burdens are more likely for older persons, and for persons with young children. Alternative models are more common when women have higher relative resources, for younger persons, and for persons living in Quebec and in urban areas.

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An interpretive phenomenological account of the experiences of family carers of the elderly

Research on family caregiving has focused on the quantitative as opposed to the qualitative investigation of the impact of caregiving on the health and psychological well-being of family carers. In this study, interpretive phenomenological analysis (IPA) was used to explore the subjective experience, needs and appraisals from the perspectives of family carers of older adults. Six family carers were recruited from a carer support group; one male and five female primary carers to an elderly family member with age or disease-related impairment. Two super-ordinate themes emerged from the analysis of interview transcripts. The first was labelled ‘feeling helpless to being wise’. The second, ‘perceptions of support’. The latter related to family carers' personal coping processes and self-constructions as carers, and to family carers' perceptions of support and predominant challenges of support seeking. Findings pointed to an evolving self-construction and explanatory framework for the tasks of caring among family carers at different points along a caring trajectory, with evidence of positive reappraisal processes. The findings also support IPA as a viable methodology for supplementing the quantitative coping literature on family caregiving and emphasise the importance of understanding the elements of ‘support’ from the perspective of being a family carer.

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Evaluation of a multiprofessional community stroke team: a randomized controlled trial

Objectives: There is inconclusive evidence of the effectiveness of stroke rehabilitation by a community stroke team. The aim was to evaluate a specialist multiprofessional team in a community setting.

Design: Randomized controlled trial.

Setting: Community.

Participants: Stroke patients and their informal carers who were referred to receive rehabilitation from a community stroke team.

Outcome measures: Barthel Index, Extended Activities of Daily Living Scale (EADL), General Health Questionnaire (GHQ-12) by patient and carer, Carer Strain Index (CSI), Euroquol, knowledge of stroke and satisfaction with services six months after recruitment.

Results: There were no significant differences between patients who received rehabilitation from community stroke team (n = 189) and those who received routine care (n = 232) in their independence in activities of daily living, mood, quality of life or knowledge of stroke. The patients in the community stroke team group were significantly more satisfied with the emotional support they had received (p < 0.01). There were no significant differences between the groups in satisfaction with practical help or overall satisfaction. Carers of patients in the community stroke team were under significantly less strain than carers in the routine care group (p < 0.04). Carers of patients in the community stroke team group were significantly more satisfied with their knowledge of stroke (p < 0.01) and were more satisfied overall (p < 0.01).

Conclusions: The patients treated by the community stroke team were more satisfied with the emotional support they received and had equivalent outcomes in terms of independence in activities of daily living and mood. Their carers were under less strain and were more satisfied with their knowledge of stroke recovery, the emotional support they received and overall satisfaction with services. The results support the provision of rehabilitation by a community-based specialist multiprofessional team.

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Living with moderate or severe traumatic brain injury: the meaning of family members' experiences

Traumatic brain injury (TBI) has long-lasting consequences not only for the individual with the injury but also for family members. The aim of this study is to elucidate the meaning of family members' experiences of living with an individual with moderate or severe TBI. The data have been collected by means of qualitative research interviews with eight family member participants. A phenomenological hermeneutic interpretation (Ricouer, 1976) of the data reveal that family members struggle with their own suffering while showing compassion for the injured person. Their willingness to assume care for the injured person is derived from their feeling of natural love and the ethical demand to be responsible for the other. Hope and natural love from close relatives, the afflicted person, and other family members give the family members strength. It is important that professionals pay more attention to the suffering of close relatives. 

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Social problem-solving abilities and distress among family members assuming a caregiving role

We examined the relation of social problem-solving abilities to distress experienced by family members assuming a caregiving role for a loved one who had recently incurred a severe physical disability. Family members completed measures of problem-solving, depression and health, while their loved one participated in an inpatient rehabilitation programme. Correlational analyses indicated that a negative problem orientation was significantly predictive of caregiver distress, regardless of the degree of physical impairment of the care recipient. Women reported more distress on several measures than men, and disability severity was also associated with depression and impaired social functioning. Family members with a greater negative orientation may be at risk to develop psychological and health problems upon assuming a caregiver role. These results are discussed in light of theoretical models of social problem-solving, and implications are presented for psychological interventions and for health policy concerning family caregivers and their care recipients.

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Relatives as paid care-givers: how family carers experience payments for care

Payments for care, by which people in need of long-term care directly employ care workers, have been introduced in many European countries. In The Netherlands, care dependants are allowed to use these payments to hire relatives to perform care tasks. Care-givers who are employed by their relatives are in a hybrid position, because they are contracted as employees in the informal setting of a family home and its affective care relationships. This paper reports a qualitative study of relatives' experiences of payments for care and how these affect their care-giving. In-depth interviews were undertaken with 17 paid carers: they were asked to respond to three fictional vignettes of contrasting care trajectories. It was found that the cash nexus had mixed and partly contradictory implications for the paid care-givers. On the one hand, the care-givers were satisfied with the arrangement, as the payments recognised and raised their status as carers, and were seen as reward and reciprocation for their care work. Some carers had found that the contract helped manage strained relationships, by enabling a clearer differentiation of care tasks from affection. On the other hand, some who regarded themselves as employees and saw their role as equivalent to formal carers felt a greater obligation to provide high-quality care, and found that they were thanked less often and received fewer tokens of gratitude.

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Choice literature review: a review of the literature and consultation on choice and decision-making for users and carers of mental health and social care services

This literature review on choice in mental health was commissioned by the Department of Health in July 2005 and submitted to the Department in January 2006. The main part of the review looked at the English language literature on choice in mental health over the past five years. It aimed to identify in particular what tools there are to help people make meaningful choices; what media are effective in facilitating decision-making; and to what extent methods such as advance directives might be used. The review also included a consultation exercise and an overview of how choice is reflected in national policy and guidance in four other countries.

Mental health service users' ability to make choices may be constrained by their own limitations (lack of knowledge, information, capacity), others' shortcomings (lack of appropriate and available services, staff unreceptive to the principle of user choice, restrictive referral processes), and by legal constraints imposed on those who are subject to compulsion under the Mental Health Act 1983. How service users make and communicate their choices also needs to be considered; there may be particular problems for people with learning difficulties, those with some form of mental impairment, those with communication difficulties due to auditory or visual impairment, people who communicate non-verbally, and those for whom English is not their first language. In addition, the choices of carers may be at odds with what service users would choose for themselves. 

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Coping and subjective burden in caregivers of older relatives: a quantitative systematic review

Aim.  This article is a report on a review of the effect of coping strategies on subjective burden in informal caregivers of older adults.

Background.  Informal care has negative effects on caregivers’ health, and subjective burden is one of these. It has been linked with other effects (e.g. anxiety and depression). Thus, greater prevention of subjective burden will mean increased prevention of these effects. To achieve this, identification of factors related to subjective burden is essential.

Data sources.  Electronic databases and manual searches of scientific journals.

Review methods.  A quantitative systematic review was conducted including: (a) original studies (b) that related caregiver subjective burden to coping strategies compatible with the classifications of Lazarus & Folkman or Moos et al. (c) in informal caregivers of older relatives. The searches ranged from the first year included in each database until January 2010. After quality appraisal, ten studies were included; these, care-recipients living at home and having cognitive impairment.

Results.  Four coping categories have been related to subjective burden: problem-focused, emotion-focused, approach and avoidance. Interesting results were only found for avoidance coping (positive association). In other categories, results were heterogeneous (problem-focused and approach) or we found few valid studies (emotion-focused).

Conclusion.  We found some evidence for a positive association between avoidance coping and subjective burden in home caregivers of older relatives with cognitive impairment. It is probable that avoidance coping either mediates or moderates the relationship between subjective burden and its outcomes, or that avoidance coping precedes subjective burden, which in turn leads to the coping outcomes. In both situations, avoidance coping is an ineffective coping.

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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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A new direction

NAViGO, a community interest company formed by service users and carers in partnership with mental health workers, has take over the running of all mental health services in northeast Lincolnshire. This article investigates this innovative example of service user and carer involvement in designing and delivering mental health services. The introduction of RESPECT training, which trains mental health workers to defuse difficult situations without using control and restraint techniques, is also discussed.

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Stress factors and mental health of carers with relatives suffering from schizophrenia in Hong Kong: implications for culturally sensitive practices

Based on Spaniol and Jung's stress and coping framework (1993), this study examined the difficulties and stresses experienced by carers with relatives suffering from schizophrenia in Hong Kong. The impact of these difficulties and stresses and of mastery as a coping resource on carers' mental health was also explored. Results show that carers experience most difficulties and stresses related to the management of negative symptoms such as refusal to perform household duties and neglect of personal hygiene, and less to handling positive symptoms such as bizarre behaviours and thoughts. It is also revealed that perceptions of stress associated with difficulties in the care of relatives with schizophrenia accounts for poorer mental health among carers. Lastly, carers with a strong sense of mastery have better mental health. Cultural issues such as 'family shame and face saving', 'family obligations and reciprocal expectations', 'external orientation to personal control' and the 'the Confucian work ethics' are put forward as explanations for these findings. Suggestions on culturally sensitive practices are made.

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Caregiving-related needs analysis: a proposed model reflecting current research and socio-political developments

The present authors have developed a model for assessing caregiving-related problems and needs, the Economic, Social, Psychological and Educational Requirements Table (ESPERT). The model was based on an analysis of the international literature concerning caregiving-related problems, and current specific European and Italian legislation, as well as the authors’ own research results (which also permitted them to design a specific instrument for the general assessment of caregivers). This paper describes the socio-psychological and socio-political background prompting the development of the model, the general instrument for the assessment of caregivers and an example of its use in a sample of caregivers of cancer patients. In the example study, 80 caregivers of cancer patients were asked to complete questionnaires evaluating their state and trait anxiety, depressive symptoms, personality traits, and specifically, their neuroticism or emotional instability, caregiving strain and the degree of satisfaction with their lives. In addition to the specific information obtained about this group of caregivers, the present results show that the completion of the ESPERT makes it possible to identify the proportion of subjects at economic, social and emotional risk, and to decide rapidly what kind of resources/interventions can be implemented, bearing in mind the most balanced cost–benefit ratio.

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The effect of caregiver support interventions for informal caregivers of community-dwelling frail elderly : a systematic review

INTRODUCTION: Informal caregivers are important resources for community-dwelling frail elderly. But caring can be challenging. To be able to provide long-term care to the elderly, informal caregivers need to be supported as well. The aim of this study is to review the current best evidence on the effectiveness of different types of support services targeting informal caregivers of community-dwelling frail elderly. METHODS: A systematic literature search was performed in Medline, PsychINFO, Ovid Nursing Database, Cinahl, Embase, Cochrane Central Register of Controlled Trials and British Nursing Index in September 2010. RESULTS: Overall, the effect of caregiver support interventions is small and also inconsistent between studies. Respite care can be helpful in reducing depression, burden and anger. Interventions at the individual caregivers' level can be beneficial in reducing or stabilizing depression, burden, stress and role strain. Group support has a positive effect on caregivers' coping ability, knowledge, social support and reducing depression. Technology-based interventions can reduce caregiver burden, depression, anxiety and stress and improve the caregiver's coping ability. CONCLUSION: Integrated support packages where the content of the package is tailored to the individual caregivers' physical, psychological and social needs should be preferred when supporting informal caregivers of frail elderly. It requires an intense collaboration and coordination between all parties involved.

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The effect of coping on the burden in family carers of persons with dementia

Objectives: This study explores the association between coping, measured by the extent of locus of control, and the burden of care on family carers of persons with dementia (PWD).

Method: Two hundred thirty PWD living at home and their family carers were recruited from 20 Norwegian municipalities. The carers’ burden was assessed by the Relatives’ Stress Scale (RSS) and coping by the Locus of Control Behaviour Scale. The PWD were assessed by the Neuropsychiatric Inventory (NPI-Q), the Physical Self-Maintenance Scale (PSMS), the Instrumental Activities of Daily Living (IADL) scale, and the Mini Mental Status Examination (MMSE).

Results: Locus of control (LoC) was found to be the most important factor associated with the burden on carers of PWD, even when we had controlled for the PWD variables, such as the NPI-Q score. The LoC and the carer's use of hours per day to assist the PWD were the only two variables the carers found that affected the extent of the burden. The NPI-Q was the most important variable in the PWD that affected the burden on the carers.

Conclusion: Carers who believe that what happens to them is the consequence of their own actions are likely to be less burdened than carers not expecting to have control. This finding gives a possibility to identify carers with a high risk of burden.

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The Effects of Mindfulness-Based Stress Reduction for Family Caregivers: Systematic Review

Caring for patients with various conditions is demanding and stressful and can have a negative impact on both physical and psychological health. This paper reports a systematic review and critical appraisal of the evidence on the effectiveness of mindfulness-based stress reduction for the family caregivers of patients with various conditions. There were improvements in the self-rated psychological symptoms, such as stress, depression, anxiety and mindfulness. To conclude, mindfulness-based stress reduction, as a safe and transportable approach, has potential to improve the psychological symptoms in the caregivers of patients with various conditions.

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Caregiver distress in dementia in rural Victoria

Aim: The aim of this study was to explore the levels of stress, anxiety and depression of informal carers caring for someone with dementia in a rural setting.

Methods: Carers of people with dementia were recruited to complete a survey that incorporated the Depression Anxiety Stress Scales (DASS) to measure carer emotional well-being. The survey also included the Neuropsychiatric Inventory Questionnaire (NPI-Q), which assesses the presence and severity of behavioural and psychological symptoms of dementia (BPSD) of care recipients and their effects on the carer.

Results: A total of 39 carers completed surveys. Almost half of the respondents reported levels of stress and depression in the moderate to severe range as measured on the DASS. BPSD exhibited by care recipients, such as agitation, anxiety, aggression and nocturnal disturbance, were associated with the level of stress reported by the carer as measured with the NPI-Q.

Conclusion: Caring for care recipients who exhibit BPSD predisposes carers in rural areas to high levels of stress and depression. Regular, periodic screening of carers is required to detect abnormal levels of stress, depression and anxiety in order to enable timely introduction of interventions.

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Losing the living

It is bad enough that carers witness the decline of the person closest to them, but to have to attend to their every need and be on the receiving end of their anger and frustration is worse. The author explains how one care home has helped her mother cope with her living loss.

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A general practice-based prevalence study of epilepsy among adults with intellectual disabilities and of its association with psychiatric disorder, behaviour disturbance and carer stress

BACKGROUND: Although the elevated occurrence of epilepsy in people with intellectual disabilities (ID) is well recognized, the nature of seizures and their association with psychopathology and carer strain are less clearly understood. The aims were to determine the prevalence and features of epilepsy in a community-based population of adults with ID, and to explore whether the presence of epilepsy was associated with greater psychopathology or carer strain.

METHODS: Data were collected on the age, gender, place of residence, adaptive and challenging behaviour, social abilities and psychiatric status of 318 adults from 40 general practices, together with the degree of malaise and strain of family carers. For participants with epilepsy, a nurse collected information on seizures, investigations, treatment and carer concerns by interview. Association between epilepsy and psychiatric morbidity, challenging behaviour and caregiver malaise or strain, was explored by comparing those with epilepsy with a comparison group matched on adaptive behaviour.

RESULTS: Fifty-eight participants (18%) had epilepsy: 26% were seizure free, but 34% had extremely poorly controlled seizures. Earlier onset and seizure frequency were associated with adaptive behaviour. Carer concerns were related to seizure frequency and a history of injury. There were no significant differences in psychopathology, carer malaise or caregiver strain between the matched epilepsy and non-epilepsy groups.

CONCLUSIONS: This study supports the high occurrence and chronicity of epilepsy among people with ID. While psychopathology and carer strain is common within this population, underlying disability-related factors appear to be more important than the presence of epilepsy per se.

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Former family carers' subjective experiences of burden: a comparison between group living and nursing home environments in one municipality in Sweden

The general knowledge of family caregivers’ experience of burden during the continuing care of a close relative with dementia is incomplete. Several types of care settings are available today, and, for carers, modalities of burden probably differ between these settings. The aim of this study was to explore whether burden differed significantly between former family caregivers (FFCs) to people with dementia who were in group living care (GLC), a small home-like unit for six to eight people, compared with people with dementia in nursing homes (NH). Twenty-six FFCs to people with dementia living in GLC and 17 FFCs to people with dementia living in NHs participated in the study. Validated scales were used to assess symptoms of dementia and provide a picture of caregiver burden, including factors such as strain, emotional involvement and environmental burden. We found that FFCs to people with dementia in NH care had a significantly higher degree of total burden, strain and environmental burden compared with FFCs to people with dementia in GLC. A significant percentage of FFCs also reported receiving insufficient information about dementia and support services. It is suggested that by adjusting physical and psychosocial settings to the cognitive state of the resident, as was done in the GLC approach, may explain the feelings of reduced burden experienced in these group of FFCs.

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From provider to enabler of care? reconfiguring local authority support for older people and carers in Leeds, 2008 to 2013

This article explores developments in the support available to older people and carers (i.e., caregivers) in the city of Leeds, United Kingdom, and examines provision changes during a period characterized by unprecedented resource constraint and new developments in national-local governance. Using documentary evidence, official statistics, and findings from recent studies led by the author, the effects of these changes on service planning and delivery and the approach taken by local actors to mitigate their impact are highlighted. The statistical data show a marked decline in some types of services for older people during a 5-year period during which the city council took steps to mobilize citizens and develop new services and system improvements. The analysis focuses on theories of social quality as a framework for analysis of the complex picture of change related to service provision. It concludes that although citizen involvement and consultations exerted a positive influence in delivering support to some older people and carers, research over a longer timescale is needed to show if these changes are adequate to protect older people and carers from the effects of ongoing budgetary constraints.

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Relations between social support, appraisal and coping and both positive and negative outcomes in young carers

This study examined a stress/coping model of adjustment in early caregiving. It was hypothesized that better adjustment would be related to higher social support and approach coping, and lower stress appraisals and avoidant coping. One hundred young carers aged 10-25 years completed questionnaires. Predictors included choice in caregiving, social support, stress appraisal and coping. Dependent variables were global distress and positive outcomes (life satisfaction, positive affect, benefits). Correlations supported all hypothesized relations between the stress/coping predictors and adjustment outcomes. Regression analyses showed social support as the strongest predictor of adjustment, whereas coping and choice in caregiving emerged as weaker predictors and stress appraisal was unrelated to adjustment. The stress/coping framework and findings have the potential to inform interventions designed to promote well-being in young carers. Copyright © 2007 SAGE Publications Ltd.

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Psychological distress and subjective burden of caregivers of people with mental illness: the role of affiliate stigma and face concern

This study examined the internalization of stigma among carers of people with severe mental health problems experiencing stigma. One hundred and eight Chinese caregivers in Hong Kong were surveyed. Affiliate stigma was found to serve as a partial mediator between face concern and caregiver distress and a full mediator between face concern and subjective burden. Cultural linkage of stigma and caregiver outcomes was identified, suggesting that researchers and practitioners should use a culturally sensitive approach to understand caregivers’ experience and alleviate their stigma.

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Religiosity as a mediator of caregiver well-being: does ethnicity make a difference?

This study used an adaptation of the stress and appraisal model to examine the mediating effects of religiosity on caregiving strain and gain with an ethnically diverse sample of 384 Alzheimer's disease caregivers in the United States. While the regression analysis indicated that religiosity did not mediate the stress of providing care for the entire sample, there were significant differences in the use of religiosity depending on the ethnicity (African American, Hispanic, and White non-Hispanic) of the caregiver, as well as significant differences between the three cohorts in the levels of caregiving strain (depression) and gain (self-acceptance). Implications for the use of religiosity as a protective factor for AD caregivers are discussed.

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Stressors and life goals of caregivers of individuals with disabilities

Caregivers of individuals with disabilities can experience stress as they manage care giving responsibilities while they attempt to balance family, work, and the satisfaction of their personal goals. In this pilot study, 31 caregivers of individuals with a variety of disabilities completed a quantitative-qualitative survey. A statistically significant relationship was found between the age and severity of disability of the family member receiving care, the length of time care had been provided, the educational level and the relationship of the caregiver to the family member and reported feelings of optimism, humbleness, quality of family relationships, financial concerns, loss of control, and hope. When life goals were probed, the most common reported were achieving financial stability, having a strong, healthy family, and experiencing happiness. The implications for supporting caregivers and their families are discussed. [Journal abstract]

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Differentiated coping strategies in families with children or adults with intellectual disabilities: the relevance of gender, family composition and the life span

This article considers the coping strategies of families with children and adults with intellectual disabilities. It is argued that the literature on coping and resilience in families has often been overlooked in favour of deficit models of family functioning. The study was designed to provide a further test of the transactional model of coping, but more especially, to explore which problem-solving, cognitive and stress reduction coping strategies family members found useful. Based on the use of a coping inventory Carers Assessment of Managing Index (CAMI), coping is shown to be differentiated according to gender, life stage and family structure. Implications for continuing research into family care are considered and some questions are raised about family support.

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Self-management by family caregivers to manage changes in the behavior and mood of their relative with dementia : an online focus group study

Background: Self-management is important for family caregivers of people with dementia, especially when they face changes in their relative’s behavior and mood, such as depression, apathy, anxiety, agitation and aggression. The aim of this study is to give insight into why these changes in behavior and mood are stressful for family caregivers, what self-management strategies family caregivers use when managing these changes and the stress they experience.

Methods: A qualitative study was conducted using four online focus groups with 32 family caregivers of people with dementia living in the Netherlands. Transcripts of the focus group discussions were analyzed using principles of thematic analysis.

Results: Managing changes in the behavior and mood of their relative with dementia is stressful for family caregivers because of constantly having to switch, continuously having to keep the person with dementia occupied and distracted, the fact that others see a different side to the relative, and the fact that caregivers know what to do, but are often not able to put this into practice. Caregivers use calming down and stimulation as self-management strategies for influencing the changes in the behavior and mood of their relative. Furthermore, caregivers describe three self-management strategies that let them manage their own stress and keep up the care for their loved ones: looking for distractions, getting rest, and discussing their feelings and experiences.

Conclusions: Behavior and mood changes of a person with dementia are stressful for family caregivers. They use several self-management strategies to positively affect the mood and behavior changes, and also to manage their own stress.

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The relative stress scale, a useful instrument to identify various aspects of carer burden in dementia?

Objective: To identify carer and patient characteristics associated with various aspects of burden of care.

Method: The burden on 196 carers, each caring for one patient with dementia, was rated by means of the Relative Stress Scale (RSS). Patients were assessed with the Mini Mental State Examination (MMSE), the Disability Assessment for Dementia (DAD) and the Neuropsychiatric Inventory (NPI).

Results: Factor analysis of the RSS resulted in three subgroups: ‘emotional distress’, ‘social distress’ and ‘negative feelings’. The total NPI score contributed to the explanation of the RSS total score and the three RSS subgroup scores with an explanatory power of 37% for total RSS, 34% for emotional distress, 27% for social distress and 20% for negative feelings. In multiple regression analysis, total NPI, DAD%, the carer being a wife and the hours spent caring per week, contributed to the explanation of total RSS with an explanatory power of 48%. Total NPI, the carer being a female and the hours spent caring, explained 38% of the variance in ‘emotional distress’. Total NPI, the DAD%-score, contact with the patient on a daily basis and the hours spent caring, explained ‘social distress’ (49%). ‘Negative feelings’ were associated with total NPI, younger patients and the carer being a wife (27%).

Conclusions: The RSS offers an opportunity to differentiate between different patterns of distress. This facilitates the creation of tailored intervention to reduce the strain of caring.

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Care arrangements for people with dementia in developing countries

Background: Rapid demographic ageing will soon lead to large increases in the numbers of persons with dementia in developing countries. This study is the first comprehensive assessment of care arrangements for people with dementia in those regions.

Methods: A descriptive and comparative study of dementia care; caregiver characteristics, the nature of care provided, and the practical, psychological (Zarit Burden Interview, General Health Questionnaire) and economic impact upon the caregiver in 24 centres in India, China and South East Asia, Latin America and the Caribbean and Africa.

Results: We interviewed 706 persons with dementia, and their caregivers. Most caregivers were women, living with the person with dementia in extended family households. One-quarter to one-half of households included a child. Larger households were associated with lower caregiver strain, where the caregiver was co-resident. However, despite the traditional apparatus of family care, levels of caregiver strain were at least as high as in the developed world. Many had cutback on work to care and faced the additional expense of paid carers and health services. Families from the poorest countries were particularly likely to have used expensive private medical services, and to be spending more than 10% of the per capita GNP on health care.

Conclusions: Older people in developing countries are indivisible from their younger family members. The high levels of family strain identified in this study feed into the cycle of disadvantage and should thus be a concern for policymakers in the developing world.

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The dyadic interaction of relationships and disability type on informal carer subjective well-being

Purpose: Care-related factors have frequently been associated with elevated levels of distress and diminished subjective well-being. However, these variables have traditionally been considered independently. The objectives of this study were to explore the subjective well-being of informal carers in Australia and to specifically examine the effect of the dyadic interaction between the caring relationship and type of disability on the subjective well-being of informal carers.

Methods: Informal carers (n = 4,096) completed the Personal Wellbeing Index (PWI) and Depression and Stress Scales. Analysis of covariance was used to compare the subjective well-being of carers to the general population while controlling for socio-demographic factors. To examine the dyadic relationship, a multivariate analysis of covariance was employed.

Results: After socio-demographic variables were controlled, informal carers reported significantly lower PWI scores compared to the general population. The results of the multivariate analysis of covariance revealed a significant interaction between the caring relationship and the type of disability being managed on subjective well-being. No differences were found for symptoms of depression and stress.

Conclusions: The findings of this study imply that the detrimental effect of caring on subjective well-being is magnified for carers who support a child with a mental illness or multiple types of disabilities. These carers displayed the lowest levels of subjective well-being, highlighting the dyadic effects of care-related variables. Consideration of these factors is essential to target effective intervention programs for those most at risk of diminished well-being.

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Is caring associated with an increased risk of mortality?: A longitudinal study

Informal care is a fundamental component of care in the community which, given current demographic trends and increasing prevalence of debilitating chronic disease, is likely to assume even greater significance in future. Research indicates that caregivers are more likely than non-carers to report poor health, though this has usually been measured in terms of psychological or emotional health such as depression or ‘caregiver strain’. Relatively little is known about the effects of caring on physical health. This study examines the health of caregivers recorded in the 2001 Northern Ireland Census and their subsequent mortality over the following four years. Caregivers were a heterogeneous group, with those providing fewer hours of care being relatively more affluent than those providing care at greater intensities. Overall, caregivers had lower mortality risks than non-carers and effects were more pronounced for women, older people, and for those reporting poorer health at the start of the study period. While this study does not exclude the possibility of significant detrimental health effects of caring for some sub-groups of caregivers, it does add support to the growing body of literature which suggests that the positive aspects of caring have been underreported.

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Combining work and care: carers' decision-making in the context of competing policy pressures

Issues related to paid work and care are of global importance, reflecting the twin pressures of population ageing and efforts to increase labour market participation. Informal carers of sick, disabled or older people can experience tensions between policies aimed at support for care and support for employment. This article discusses a study of carers’ decision-making around work and care, drawing on evidence from interviews with 80 working-age carers in England. Carers are not homogeneous; their circumstances and needs differ reflecting age, gender, ethnicity, labour market participation, and the condition and/or needs of the person they support. This diversity is illustrated by contrasting rural and urban carers’ decisions and experiences about work and care. Key factors that impact on carers’ decisions are: current and anticipated financial need; the constraints arising from receipt of carers’ and other means-tested income maintenance benefits; personal identity; job opportunities and scope for flexibility; social services provision; carers’ own health. Distance, travel times and transport are unique additional challenges for rural carers who (wish to) work. These difficulties are further intensified when they intersect with other factors such as the Carer's Allowance, the local labour market and social services provision. The findings are evaluated in terms of the adequacy of current government policy measures.

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The impact of stroke on the well-being of the patient's spouse: an exploratory study

Aims.  The aim of this study was to investigate the impact of stroke on the patient's spouse, paying particular attention to psychiatric morbidity and the strain of caring, and correlating these with the degree of disability of the patient. The impact of impairment of speech was also investigated.

Background.  The impact of a stroke is not limited to the person who suffers it but also to the family, with the patient's spouse being particularly vulnerable. The literature suggests that the consequences for the spouse can be physical, psychological, economic and social.

Methods.  A quantitative approach was employed to investigate 44 couples who volunteered to participate in the study. A small battery of validated instruments was used to describe the patient's degree of disability, and psychiatric morbidity and the strain of caregiving in the spouse. Pearson's Correlation and Mann–Whitney U-test were used in data analysis.

Results.  The spouses were found to have a greater degree of psychiatric morbidity than a reference group and a large proportion of them found caregiving to be stressful. Psychiatric morbidity and strain in the spouses were not directly proportional to the extent of the patient's disability. Spouses whose partners’ speech was affected by the stroke were more likely to experience strain than those who were unaffected in this way.

Conclusions.  This study contributes to our knowledge of the relationship between patients’ physical disability and the level of strain and psychiatric morbidity in spouses. The relationship is a complex one, in which it is not possible to predict with confidence which spouses will be most vulnerable.

Relevance to clinical practice.  Caring for a patient following a stroke is very stressful, particularly in cases where the patient's speech is affected and there is also likely to be a significant effect on the psychological well-being of the spouse. This information is relevant to all nurses caring for patients with stroke and the patients’ spouses.

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Economic deprivation and its effects on subjective wellbeing in families of people with multiple sclerosis

Background: There has been limited research on the role of financial strain on the adjustment of people with multiple sclerosis.

Aims: This study examined the financial costs of MS and the impact of financial strain on the quality of life and adjustment of people with MS and their families.

Methods: Interviews were conducted with 16 health professionals, 26 people with MS and 11 family members of people who have MS.

Results: Economic deprivation impacted on the subjective well being of many families living with MS. Concerns included adjustment to a lower income if the person with MS reduced or ceased work, and meeting the costs of home alterations, mobility equipment, and special transport. The additional cost of living with MS is a stress factor, especially for people dependent on disability support pensions.

Conclusions: It is anticipated that the findings from this study will raise the awareness of health professionals and politicians regarding the potential impact of financial stress on people with MS and their families.

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Contrasting perceptions of health professionals and older people in Australia: what constitutes elder abuse?

Objectives: To explore the perceptions of family carers, older people and health professionals in Australia about what constitutes elder abuse.

Methods: The Caregiving Scenario Questionnaire (CSQ) was disseminated to health professionals from two metropolitan hospitals, older volunteers and carers of older people with dementia recruited for other studies.

Results: One hundred and twenty health professionals, 361 older people and 89 carers returned the surveys. χ2 analyses indicated that significantly more health professionals than older people identified locking someone in the house alone all day (χ2 (2) = 10.20, p = 0.006, Cramer's V = 0.14), restraining someone in a chair (χ2 (2) = 19.984, p = 0.0005, Cramer's V = 0.19) and hiding medication in food (χ2 (2) = 8.72, p = 0.013, Cramer's V = 0.13) as abusive. There were no significant differences between healthy volunteer older people and carers in their perceptions of elder abuse. A significant minority (40.8%) of health professionals and over 50% of carers did not identify locking the care recipient alone in the house all day as abusive.

Conclusion: In Australia, there is limited consensus between older people, carers and health professionals regarding what constitutes elder abuse. Health professionals were more likely to identify abusive and potentially abusive strategies correctly than carers or healthy older people, but nonetheless between one quarter and two-fifths [correction made here after initial online publication] of health professionals did not identify the abusive strategies. Copyright © 2010 John Wiley & Sons, Ltd.

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How do informal caregivers of patients with cancer cope: A descriptive study of the coping strategies employed

Purpose: A trend exists towards moving from the hospital and caring for the patients with cancer at home, which has directed the burden of caring to the family. As a result the numbers of informal caregivers, who assumed the care of their loved ones, has increased rapidly. The aim of the study is to explore the ways that families use to cope with the stressors and hardships of caregiving and expand the knowledge about coping.

Methods: This is a descriptive research design, with the use of a convenience sample of 130 dyads. Consenting patients identified their primary family caregiver who was asked to participate in the study.

Key results: The majority of the caregivers employed emotionally focused ways of coping with the caregiving burden such as: “I was hoping for a miracle” (mean 2.19), “I was hoping that time would change things and simply waited” (mean 2.14) and “I found consolidation in my faith to God” (mean 2.05). Assertive ways of coping such as “I expressed my anger to the patient” (mean 0.78) and “I dared to do something risky” (mean 0.98) were less likely to be used by the caregivers.

Conclusions: Findings are consistent with those of previous research that informal caregivers experience substantial psychological morbidity in the form of depression in addition to caregiver burden when they assume the role of the informal caregiver. Caregivers employ various strategies in order to cope with the strains associated with the complex physical and emotional demands involved in caring.

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The influence on carer wellbeing of motivations to care for older people and the relationship with the care recipient

This paper reports an analysis of the relative influence of work-related, care-related and personal factors on carer outcomes among 204 working female carers. To examine the importance of personal factors, the ‘Motivations in Elder Care Scale’ (MECS) and the ‘Relationships in Elder Care Scale’ (RECS) were developed. In a qualitative pilot study, interviews with working-age carers were drawn on to form the items for inclusion. The MECS included items for external pressures to care, e.g. guilt, the older person's expectation of care, and perceived disapproval of others, and for internal desires to adopt the caring role, e.g. carer's resistance to other forms of care, living up to one's principles and caring nature. Psychometric tests revealed that two subscales had greater reliability, the EXMECS (extrinsic motivations to care) and the INMECS (intrinsic motivations). The RECS included both positive items, e.g. respect, admiration for the older person, and lack of generational differences, and negative relationship items, e.g. struggle for power, and older person's resistance to caring efforts, and had good reliability. Measures of carer stress and carer satisfaction were included as outcome variables. Multiple regression analyses showed that the RECS and the MECS were the most significant predictors of carer outcomes. Greater extrinsic motivations to care and poorer quality of the relationship with the older person were the most significant predictors of carer stress. Better relationship quality and greater intrinsic motivations to care were the most significant predictors of carer satisfaction.

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Stress in carers of individuals with demtenia and Community Mental Health Teams: an uncontrolled evaluation study

Aim.  The aim of this was to evaluate the effectiveness of interventions provided by a Community Mental Health Team (CMHT) in reducing stress in carers of individuals with dementia.

Background.  The CMHT had been created to working specifically with older people with mental health problems and their carers. Following initial multidisciplinary assessment a range of interventions were provided to both clients and carers according to assessed need. There is an established need for mental health services to focus on the need of carers and the study attempts to see if the interventions provided were useful in reducing carer stress.

Method.  The study used a time series design over a 2-year period on all referrals to the CMHT. All carers of individuals with dementia or clearly identified memory problems were invited to participate and a total of 26 carers consented and participated in all stages of data collection. Data were collected on initial assessment, as well as 3 and 6 months following the initial assessment using the Caregiver Strain Index (CSI). A questionnaire was also administered which collected basic demographic information and details of symptoms demonstrated by the carer's relatives.

Results.  On initial assessment the mean CSI score for the overall sample was 9·23. The mean CSI reading at 3 months (6·63) and 6 months period (4·12) demonstrated statistically highly significant reductions in carer stress (P = 0·000). A linear stepwise regression analysis of the impact of the different interventions on reductions in the CSI scores showed a statistically significant relationship between respite care and reduction in carer stress (B = 1·705, t = 2·586, P = 0·017).

Conclusion.  The results add support to the role of multidisciplinary community based services for individuals with dementia, offering a range of interventions to both clients and their carers, in reducing carer stress. The authors also argue for the routine use of the CSI in such teams as means of monitoring the well-being of carers as well as evaluating the effectiveness of service delivery.

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Determinants of satisfaction with care and emotional distress among informal carers of demented and non-demented elderly patients

Little research has been carried out into determinants of both carer satisfaction in the caregiving role and how these compare with determinants of emotional distress among carers. Principal informal caregivers to 91 patients with dementing or non-dementing disorders were identified from consecutive referrals to community psychiatric nurses in an old age psychiatry service. Clinical, demographic, service and carer satisfaction variables were recorded. Emotional distress in carers was measured with the 28 item General Health Questionnaire. Dissatisfaction with caregiving was weakly correlated with emotional distress (r=0.21, p=0.042). Multiple linear regression revealed two variables which were associated with greater dissatisfaction with the caregiving role, the carers' overall rating of the degree of difficulty in the caregiving role (p<0.001) and younger age of the carer (p=0.014). Emotional distress was independently associated with the degree of difficulty in the caregiving situation (p<0.001) and inversely with the dependency of the patient on the care (p=0.038). The caregiver's assessment of the difficulty in caregiving was associated with both carer dissatisfaction and emotional distress in the caregiving role. While emotional distress was associated with the perception that the patient could do more for themselves, carer dissatisfaction was associated with younger age of the carer. There were competing demands on younger carers, particularly work. Copyright © 2000 John Wiley & Sons, Ltd.

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Living with the dying: using the wisdom of mindfulness to support caregivers of older adults with dementia

High levels of stress among family and professional caregivers of older adults with dementia are associated with physical and mental health problems, and decreased quality of care. Existing stress reduction interventions are based on the western medical model of care. They typically focus on providing caregivers with support, psychoeducation or behaviour management skills, and these interventions have typically had modest outcomes. An especially promising intervention for dementia caregivers, which is based on the eastern holistic model of care, is mindfulness training. Despite more than 20 years of research demonstrating the effectiveness of mindfulness-based interventions, their applicability for caregivers has received very little attention in the psychological research literature. We discuss how mindfulness training, as an alternative or adjunct to existing interventions, can help caregivers cope with providing care to dying older adults more skilfully, leading to reduced stress, enhanced well-being and improved quality of care.

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Pilot study of an exercise intervention suitable for older heart failure patients with left ventricular systolic dysfunction

Background: Most studies of exercise training for heart failure have been conducted on relatively young patients with little comorbidity. Such programmes are unsuitable for the majority of older frail heart failure patients.

Aims: To test the acceptability and tolerability of an outpatient exercise programme in older heart failure patients with comorbid disease.

Methods: 17 patients aged 70 years and over with left ventricular systolic dysfunction attended twice weekly group exercise classes for 12 weeks, focussing on endurance exercise and everyday functional tasks. Outcome measures were proportion of sessions attended; adverse events and reasons for non-attendance; six-minute walk, accelerometry, hospital depression and anxiety score, Guyatt quality of life scale, carer strain and satisfaction scores.

Results: 83% of sessions were attended; 80% of subjects attended at least 80% of allocated sessions. One adverse incident occurred in 324 person-sessions. Encouraging improvements were seen in six minute walk test (+ 19 m, p = 0.14) and in Functional Limitation Profile score (− 82 points, p = 0.02). 50% of informal carers attended at least one session. No increase in carer strain was noted.

Conclusions: Twice-weekly group exercise focussing on aerobic endurance and everyday functional tasks was acceptable and well-tolerated in this patient group.

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Identifying needs, burden, and distress of carers of people with Frontotemporal dementia compared to Alzheimer's disease

The literature on carers of people with Frontotemporal dementia (FTD) is negligible compared to the vast literature on carers of people with Alzheimer’s disease (AD), and little research has compared the two groups. Research has mainly focused on identifying the behavioural characteristics of people with FTD or AD. The impact of these behaviours on the psychological well-being of carers of people with FTD is relatively unexplored. This study investigated the needs, burden, and extent of depression and anxiety in carers of people with FTD (n = 30) compared to carers of people with AD (n = 30). Findings indicated that needs of carers of people with FTD were significantly higher than those of the carers of people with AD. The elevated needs were related to the younger onset of FTD, financial dissatisfaction, typical FTD characteristics, and access to appropriate services, information and support. Results also suggested that female carers were more likely to report a greater severity and impact of disruptive symptoms associated with FTD. No significant differences were found between the two groups on carers’ levels of burden, depression or anxiety. In order to address the needs of carers of people with FTD, we recommend specific educational and support programs, raising community awareness and understanding, and tailoring existing domiciliary services and activities for people with FTD.

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What works well in community care: supporting older people in their own homes and community networks

This paper presents findings from a qualitative study that sought to identify what works well in supporting older people to live in their own homes and local communities. Drawing on data from six focus groups conducted with key stakeholders, including older people, carers, care managers and direct service providers, the shortcomings of existing services to meet the needs of older people are recognised and the paper seeks to move discusion forward to what might help improve provision. Examples identified during the focus groups are explored and highlight the importance of enabling older people to maintain community connections and draw on existing community facilities. To be effective, support needs to be underpinned by a person‐centred approach which takes into account individual preferences and priorities, and is organised locally to where older people live. Statutory organisations are often constrained by restrictive thinking and financial pressures lead to resourcecentred rather than person‐centred responses to individuals in need. Our findings suggest that commissioners of services should be more creative in developing flexible providers in local communities and that we consider approaches that may be helpful in achieving this and transforming support arrangements. The potential of an action research programme to explore the ideas raised and enable processes for development, outcomes for older people, their carers and the communities in which they live, as well as the costs, to be tested comparatively with traditional services is noted. The importance of capacity building and investment in the independent sector and other community partners is critical to achieving change.

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Dementia caregiving burden and breakdown

This article summarises PhD research undertaken by the author and provides readers with the carer assessment tools validated in the study. [Journal abstract]

Older carers in the UK: who cares?

Long-term care in the UK relies heavily on informal and unpaid carers. Statistical data regarding the number of carers in the 2001 Census compared with the 2011 Census identify an increase of around 600 000 carers. It is also significant that many of these carers are themselves in their late middle age. The reasons for taking on the caring role are varied, but there are significant potential physical, mental and financial issues associated with taking on the caring role. Positive benefits in terms of support provision for the carer do exist, but support services across the UK are variable. This article outlines the problems that may be faced by carers and provides directions for future developments and research into how this situation might be improved.

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Coping with the caregiving role: differences between primary and secondary caregivers of dependent elderly people

Objectives: The topic of how primary informal caregivers cope with their caregiving demands has generated significant research. However, little is known about secondary informal caregivers, who often share caregiving responsibilities. This cross-sectional study aims to analyse and compare the use and effectiveness of coping strategies of primary and secondary informal caregivers of dependent elderly people, living at home.

Method: A sample of 180 informal caregivers of dependent elderly people – 90 primary and 90 secondary caregivers – was obtained. The study was conducted in the district of Aveiro (Portugal). The Portuguese version of Caregivers’ Assessment Management Index – CAMI (Nolan, Keady, & Grant, 1995) was administrated to both sub-samples.

Results: Findings suggest that emotion-cognitive strategies are less efficient for secondary caregivers (e.g. drawing on personal or religious beliefs). Common problem-solving strategies adopted by both types of caregivers involve relying on own their experience and expertise and addressing and finding a solution to the problem. Neither group were highly efficient at managing care-related stress, but both identified benefits from taking time off or maintaining interests outside of caregiving.

Conclusion: These findings can guide professionals in targeting and monitoring interventions aiming to develop caregivers’ effective coping strategies. Besides, engaging secondary caregivers in current available interventions and services, usually targeted to the primary caregiver, is of paramount need, as they can reduce the burden of primary caregivers and delay institutionalisation.

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When a little knowledge is a dangerous thing: a study of carers' knowledge about dementia, preferred coping style and psychological distress

The aim of this study was to improve understanding of the relationship between carers' existing knowledge about dementia, their coping style and psychological morbidity. Fifty carers and patients attending day services were recruited. Carers were given questionnaires to assess knowledge of dementia, preferred coping style, anxiety, depression and strain. The results indicated that carers who demonstrated more knowledge about the biomedical aspects of dementia were more anxious. Furthermore, carers who had a preferred coping style of monitoring for threat relevant information were more anxious. Understanding more about those factors that are associated with knowledge about dementia will help to identify profiles of carers who are in need of education and in matching individually tailored interventions to carers with specific learning needs.

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Integrated transitional care: patient, informal caregiver and health care provider perspectives on care transitions for older persons with hip fracture

Introduction: Complex older adults, such as those with hip fracture, frequently require care from multiple professionals across a variety of settings. Integrated care both between providers and across settings is important to ensure care quality and patient safety. The purpose of this study was to determine the core factors related to poorly integrated care when hip fracture patients transition between care settings.

Methods: A qualitative, focused ethnographic approach was used to guide data collection and analysis. Patients, their informal caregivers and health care providers were interviewed and observed at each care transition  A total of 45 individual interviews were conducted. Interview transcripts and field notes were coded and analysed to uncover emerging themes in the data.

Results:  Four factors related to poorly integrated transitional care were identified: confusion with communication about care, unclear roles and responsibilities, diluted personal ownership over care, and role strain due to system constraints. 

Conclusions: Our research supports a broader notion of collaborative practice that extends beyond specific care settings and includes an appropriate, informed role for patients and informal caregivers. This research can help guide system-level and setting-specific interventions designed to promote high-quality, patient-centred care during care transitions.

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Activities enjoyed by patients with dementia together with their spouses and psychological morbidity in carers

Caring for a spouse with dementia is stressful and respite care is sometimes used to reduce this burden. Spouses may find some aspects of caring rewarding but the literature on positive aspects of caring is limited. To describe activities enjoyed by patients with dementia together with their spouses, and examine their relationship with psychological morbidity in carers. A convenience sample of 46 patients with mild to moderate dementia (91% with Alzheimer's disease, AD) and their spouses were interviewed at home. Spouses completed the Pleasant Events Schedule (PES-AD) to identify activities enjoyed by patients and spouses on their own and together. Psychological morbidity in spouses was assessed using the General Health Questionnaire (GHQ-12). Cognitive functions, and non-cognitive symptoms were also assessed in patients. Multiple regression analysis using age, Mini-Mental State Examination, Cornell Scale for Depression in Dementia, Revised Memory and Behaviour Problems (RMBP) checklist frequency, and PES-AD- together scores as independent variables found PES-AD-together and RMBP-frequency to be independent predictors of GHQ-12 scores in spouses, but the model could explain only 28% of variance. Facilitating activities that are enjoyed by both patients with dementia and spouses may be an alternative intervention strategy to reduce carer burden.

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Supporting families and carers of drug users: a review

This review examines the impact of drug use upon families and carers and identifies their needs. It examines and describes the range of provision and methods of addressing the needs of families and carers. It gives particular attention to the development of family support groups. It also offers information about resources available to agencies, service providers and family support groups.

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Burnout of caregivers: a comparison between partners of psychiatric patients and nurses

Care of a person with mental illness involves multiple burdens, possibly leading to burnout. This study compares partners of persons with schizophrenia and depression with nursing staff based on dimensions of burnout. Nursing staff and partners of patients with schizophrenia or depression were consecutively recruited from psychiatric hospitals and interviewed with the Maslach Burnout Inventory. No significant differences were found in the three dimensions of burnout (emotional exhaustion, depersonalization, and personal accomplishment) for the two groups of caregivers. About one fourth of the respondents in both groups showed a high degree of burnout. Professional and nonprofessional caregivers face a similar degree of burden and need support to perform their caretaking tasks.

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The experience of caring for a family member with Alzheimer's disease

The purpose of this phenomenological study was to describe the experience of caring for a family member with Alzheimer’s disease or related disorder (ADRD) living at home among a diverse sample of 103 family caregivers. The study involved secondary analysis of in-depth transcribed interview data using van Kaam’s rigorous four phase, 12-step psychophenomenological method. A total of 2,115 descriptive expressions were categorized into 38 preliminary structural elements. Eight essential structural elements emerged from an analysis of the preliminary structural elements. The eight elements were then synthesized to form the following synthetic structural definition: Caring for a family member living at home with ADRD was experienced as “being immersed in caregiving; enduring stress and frustration; suffering through the losses; integrating ADRD into our lives and preserving integrity; gathering support; moving with continuous change; and finding meaning and joy.”

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Measuring the impact of caregiving on informal carers: a construct validation study of the CarerQol instrument.(Research)(Report)

Background: Informal caregivers provide a significant part of the total care needed by ill or disabled persons. Although informal care is often the preferred option of those who provide and those who receive informal care, caring can nevertheless be very straining. This study investigates construct validation of an instrument of the impact of caregiving, the CarerQol.

Methods: Data was collected among adult caregivers (n = 1,244) selected from the general population using an online questionnaire in October 2010, in the Netherlands. The CarerQol measures and values the impact of informal care. The CarerQol measures subjective burden (CarerQol-7D) and well-being (CarerQol-VAS). Construct validation comprised clinical, convergent and discriminative validity tests.

Results: Clinical validity was supported by statistically significant associations of CarerQol-VAS and caregivers’ health, income and employment status, care recipients’ health, and the relationship between caregiver and care recipient. Convergent validity was supported by positive associations of CarerQol-VAS with the two positive CarerQol-7D dimensions (fulfillment and support) and negative associations with the five negative CarerQol-7D dimensions (relational problems, mental health problems, problems combining daily activities, financial problems and physical health problems). Moreover, CarerQol-VAS was negatively associated with other instruments measuring caregiving burden.

Conclusions: Construct validity tests in a large, heterogeneous sample of caregivers show that the CarerQol validly measures the impact of caregiving. The CarerQol can be used in informal care research and economic evaluations of health care interventions. Hence, its use can facilitate informed decision making in health care.

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Interventions to improve the experience of caring for people with severe mental illness: systematic review and meta-analysis

Background: Informal caregiving is an integral part of the care of people with severe mental illness, but the support needs of those providing such care are not often met.

Aims: To determine whether interventions provided to people caring for those with severe mental illness improve the experience of caring and reduce caregiver burden.

Method: We conducted a systematic review and meta-analyses of randomised controlled trials (RCTs) of interventions delivered by health and social care services to informal carers (i.e. family or friends who provide support to someone with severe mental illness).

Results: Twenty-one RCTs with 1589 carers were included in the review. There was evidence suggesting that the carers’ experience of care was improved at the end of the intervention by psychoeducation (standardised mean difference –1.03, 95% CI –1.69 to –0.36) and support groups (SMD = –1.16, 95% CI –1.96 to –0.36). Psychoeducation had a benefit on psychological distress more than 6 months later (SMD = –1.79, 95% CI –3.01 to –0.56) but not immediately post-intervention. Support interventions had a beneficial effect on psychological distress at the end of the intervention (SMD = –0.99, 95% CI –1.48 to –0.49) as did problem-solving bibliotherapy (SMD = –1.57, 95% CI –1.79 to –1.35); these effects were maintained at follow-up. The quality of the evidence was mainly low and very low. Evidence for combining these interventions and for self-help and self-management was inconclusive.

Conclusions: Carer-focused interventions appear to improve the experience of caring and quality of life and reduce psychological distress of those caring for people with severe mental illness, and these benefits may be gained in first-episode psychosis. Interventions for carers should be considered as part of integrated services for people with severe mental health problems.

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Stress affects carers before patient’s first visit to a memory clinic

OBJECTIVE: To measure and compare the burden on spousal carers of patients with and without dementia who were consulting a memory clinic for the first time.

METHODS: We included 413 dyads of patients and their spousal carers consulting a memory clinic for the first time. Of them 276 had a diagnosis of Cognitive Impairment No Dementia (CIND) and 137 had a dementia diagnosis. The burden of care was measured with the Relative Stress Scale (RSS). The gender of patients and their spouses was recorded and measures of cognition, depression and functional capacity of the patients were included in the analysis.

RESULTS: Of all carers, 27.6% had a score on the RSS of above 23, indicating a moderate to severe burden. The corresponding score for carers of patients with CIND was 20.3%, compared to 42.2% for those with dementia. However, in a linear regression analysis with RSS as the dependent variable, the dementia diagnosis variable was not significant. Three variables were significant (p < 0.05) and has explained 34% of the variance of the score on the RSS, impaired function in activities of daily living (ADL) was the most important variable (beta 0.56), followed by female gender of carers (beta 0.19) and the extent of the symptoms of depression observed in the patients (beta 0.10).

CONCLUSION: Carers of both CIND and dementia patients when attending a memory clinic for initial diagnostic assessment experience high levels of stress. Impaired function in ADL in patients is the strongest predictor of this stress.

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Surgical and psychosocial outcomes in the rural injured—a follow-up study of the 2001 earthquake victims

Introduction: After a major disaster in a developing country, the graphic media coverage of the dead and injured invariably leads to an influx of volunteering healthcare personnel to the disaster zone. Very few studies document the outcomes of the treatment rendered in this field setting, under compromised conditions. We revisited the rural victims of the 2001 Gujarat earthquake in an attempt to analyse their surgical outcome and the status of their physical/psychosocial rehabilitation, 2 years after the disaster.

Method: We traced displaced victims treated for earthquake-related injuries to their new homes. A community health worker interviewed patients with an oral questionnaire in the local language about injuries, the examining physician and first aid, orthopaedic implants, amputations, wounds, disability, deformity, residual pain, occupational and economic rehabilitation, post traumatic stress disorder (PTSD) and perceptions of healthcare rendered.

Results: We located 133 of the 179 non-urban victims, from 11 villages. There were 10% missed injuries, 19% infection rate, restricted range of motion in 12%, non-union rate in 23% and reoperations in 30.5% patients. Fifty-one percent had resumed their previous occupation, but only 30% had recovered economically. Of 98% who had destroyed homes, 89% had their homes rebuilt. Residual sadness was the only significant PTSD symptom.

Conclusion: This trauma outcome study highlights the shortcomings of surgeons for disaster-related work. One-tenth of the injuries were missed, suggesting that field examination at the site of disaster was more difficult than in the comfort of the hospital emergency room. Further there were inappropriately timed, aggressive implant operations, short time commitments, a lack of follow-up and a high rate of reoperations contributing to subsequent morbidity. These pointed to a need for training in disaster medicine within the curriculum of surgical residency. On the brighter side, despite poor sterility, prolonged transport times and no prehospital care, the postoperative infection rate was lower than expected. This perhaps was due to use of potent antibiotics in a previously unexposed rural population. Good physiotherapy given in the temporary shelters, by the informal carers within the family and by voluntary groups, kept up a good range of motion and reduced the final disability. PTSD was marked 3–6 months after the event, but was minimal 2 years postquake. Sadness about the event was the only residual PTSD symptom. While there were varying perceptions of satisfactory outcome, we found good coping mechanisms in place. The simple village folks were largely happy to be alive and accepted the residual deformities and cosmetic blemishes as a “small price to pay”.

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Carer burden in apathy and impulse control disorders in Parkinson's disease

Background: The neuropsychiatric complications of Parkinson's disease (PD), which include behaviour disturbances such as apathy and the impulse control disorders (ICDs), may have a significant effect on patients with PD and their carers. The contribution of these behaviour disorders to carer burden is less understood. Therefore, the aim of this study was to explore the relationship that apathy and ICDs have with carer burden.

Methods: Non-demented (n = 71) PD–carer dyads (spouse or adult child) participated in the study. The PD participants were divided into three behavioural groups: ICD (n = 21), apathy (n = 22) and controls (n = 28). The three groups were compared for level of burden in their carers by using the Zarit Burden Interview. The PD participants were rated for levels of apathy, impulsivity and motor and psychiatric symptoms. Using a multivariate analysis, we sought the PD-related predictors of carer burden.

Results: Significantly, greater burden was seen in carers of PD participants with ICDs (p = 0.002) or apathy (p = 0.004), compared with carers of PD participants without such behavioural disturbances. Linear regression models revealed that attentional ability accounted for burden in carers of the group with apathy, whereas dopaminergic load and depression accounted for burden in carers of the group with impulsivity.

Conclusion: PD-related behaviour disturbances, such as apathy and ICDs, as well as psychiatric complications, have significant negative implications for burden of care.

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Predicting mental health outcomes in female working carers: a longitudinal analysis

This study investigated the factors contributing to psychological distress and positive affect over time in female working carers of older people. Questionnaires (including measures of work-related, care-related, interpersonal and psychological aspects of working and caring) were distributed to 275 female working carers in the UK, the majority of whom were working as nurses in the National Health Service. In cross-sectional analyses, higher work stress and work demands predicted higher psychological distress among respondents. Better carer health, lower external pressures to care and higher work satisfaction predicted greater positive affect. The combined effects of greater work stress and work demands also predicted higher levels of psychological distress at follow-up (after one year), whereas younger age and lower work stress predicted greater positive affect over time. We conclude that more stressful and demanding work roles appear detrimental to carers’ mental health, while lower stress occupational roles may be beneficial, providing satisfaction and fulfilment outside of the caring role. Older female carers may be especially at risk of psychological distress, possibly due in part to increasing health problems of their own.

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'Tinged with bitterness': re-presenting stress in family care

The provision of care within families, and specifically the difficulties within such relationships, has become the focus of much research, legislation and debate in recent years. This paper explores carers' and carees' talk about 'stress', home-based care. Carers' and carees' accounts are presented to theorise the construction of difficulties in the present relationship--focusing in particular on the taking up of or resistance to roles and responsibilities within the family. Family care is re-presented with a focus on language, and a reflection on how such relationships can become tinged with bitterness.

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Prevalence of stress, anxiety and depression in with Alzheimer caregivers

Background: Alzheimer's disease presents a social and public health problem affecting millions of Italians. Those affected receive home care from caregivers, subjected to risk of stress. The present investigation focuses on stress, anxiety and depression in caregivers.

Methods: Data on 200 caregivers and their patients were collected using a specific form to assess cognitive, behavioural, functional patient (MMSE, and ADL-IAD) and caregiver stress (CBI). The relationship between stress, depression and disease has been assessed by means of a linear regression, logistic analysis which reveals the relationship between anxiety, stress and depression and cognitive problems, age, the patient's income.

Results: The caregivers are usually female (64%), mean age of 56.1 years, daughters (70.5%), pensioners and housewives (30%), who care for the sick at home (79%). Of these, 53% had little time for themselves, 55% observed worsening of health, 56% are tired, 51% are not getting enough sleep. Overall, 55% have problems with the patient's family and/or their own family, 57% at work. Furthermore, 29% feel they are failing to cope with the situation as they wish to move away from home. The increase in the degree of anxiety and depression is directly proportional to the severity of the illness, affecting the patient (r = 0.3 stress and depression r = 0.4 related to CBI score). The memory disorders (OR = 8.4), engine problems (OR = 2.6), perception disorders (OR = 1.9) sick of the patient with Alzheimer's disease are predictive of caregiver stress, depression is associated with the presence of other disorders, mainly behavioural (OR = 5.2), low income (OR = 3.4), patients < 65 years of age (OR = 2.9).

Conclusion: The quality of life of caregivers is correlated with the severity of behavioural disorders and duration of the Alzheimer's disease. The severity of the disease plays an important role in reorganization of the family environment in families caring for patients not institutionalised. It is important to promote measures to soften the impact that the patient has on the caregiver, and that, at the same time, improves the quality of life of the patient.

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Linkages among empathic behaviors, physical symptoms, and psychological distress in patients with ovarian cancer: a pilot study

Purpose/Objectives: To explore linkages among empathic responding by informal caregivers with the physical symptom experiences and psychological distress of patients with ovarian cancer. Design: Preliminary, descriptive, correlational, and cross-sectional. Setting: Psychosocial oncology support group in Canada. Sample: Convenience sample of 13 women with stage I-IV ovarian cancer with the majority diagnosed with disease recurrence. Methods: Data were collected on a single telephone call using the Hospital Anxiety and Depression Scale, the Empathic Responding Scale, the Memorial Symptom Assessment Scale, and the Dyadic Perspective-Taking Scale. Analysis included a correlation of variables. Main Research Variables: Empathic responding, physical symptom experiences, and psychological distress. Findings: Preliminary findings provided partial support for linkages among the perceived empathic behaviors of informal caregivers and the psychological distress and physical symptom experiences of patients with ovarian cancer. Patients who were more depressed reported elevated symptom experiences. Patients also reported more anxiety and depression when they perceived that their informal caregivers were engaging in less empathic behaviors toward them. Conclusions: The empathic behavior of informal caregivers toward patients appeared to be related to lower levels of anxiety and depression in patients with end-stage ovarian cancer.

Implications for Nursing: Clinicians need to be aware that anxiety and depression in patients with ovarian cancer appear to be related to the patients' physical symptom experiences and the degree of empathic support the patients perceive from their informal caregivers. This has implications for clinical assessment of patients' anxiety and depression, physical symptoms, and available empathic social support.

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Burden on family carers and care-related financial strain at the end of life: a cross-national population-based study

Background: The rising number of deaths from cancer and other life-limiting illnesses is accompanied by a growing number of family carers who provide long-lasting care, including end-of-life care. This population-based epidemiological study aimed to describe and compare in four European countries the prevalence of and factors associated with physical or emotional overburden and difficulties in covering care-related costs among family carers of people at the end of life.

Methods: A cross-national retrospective study was conducted via nationwide representative sentinel networks of general practitioners (GPs). Using a standardized form, GPs in Belgium, The Netherlands, Italy and Spain recorded information on the last 3 months of life of every deceased adult practice patient (1 January 2009–31 December 2010). Sudden deaths were excluded.

Results: We studied 4466 deaths. GPs judged family carers of 28% (Belgium), 30% (The Netherlands), 35% (Spain) and 71% (Italy) of patients as physically/emotionally overburdened (P < 0.001). For 8% (Spain), 14% (Belgium), 36% (The Netherlands) and 43% (Italy) patients, GPs reported difficulties in covering care-related costs (P < 0.001). Patients <85 years of age (Belgium, Italy) had higher odds of having physically/emotionally overburdened family carers and financial burden. Death from non-malignant illness (vs. cancer) (Belgium and Italy) and dying at home compared with other locations (The Netherlands and Italy) were associated with higher odds of difficulties in covering care-related costs.

Conclusion: In all countries studied, and particularly in Italy, GPs observed a considerable extent of physical/emotional overburden as well as difficulties in covering care-related costs among family carers of people at the end of life. Implications for health- and social care policies are discussed.

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Electronic tagging of people with dementia who wander

Once again the issue of using electronic tagging to safeguard older people who wander has attracted media attention. It is tempting to see the arguments as simply two sided—one side stressing the need to ensure safety and the other waving the banners of civil liberties and human rights. We think that this is not simply a factual matter but one that touches important values to do with respect for people. The correct position, therefore, is to face the complex dilemma. Decisions about limiting a person's liberty should remain a matter of ethical concern even when technology finally makes the practical management of wandering easier.In electronic tagging the tag is usually a wristband. The circuitry in the tag may either set off a boundary alarm or emit a radio signal that allows the wearer to be tracked down by means of a hand held detector.

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Consumers in charge of care: The Dutch personal budget and its impact on the market, professionals and the family

One of the icons of the Dutch welfare state reforms is the Personal Budget. With the introduction of this budget, care patients now have become consumers. They can manage their own budget and employ a care worker who cares according to the cared-for's wishes. The Personal Budget intends to create a market of care, as well as a shift of balance of power from professionals to care receivers. In practice, the market has not come yet. Instead, the majority of budget holders employ a family member. This is important as it gives recognition to informal carers. On the other hand, this may hamper the employment career of people with care responsibilities as they are likely to be constrained in their care relationship. Another caveat is that the Personal Budget undermines the professionalisation process of care workers. When consumers are in charge, care workers are no longer the custodians of their professional development. This may have unwelcome consequences for the quality of care in the long term.

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Invisible and in distress: prioritising the mental health of England's young carers

Young carers doing more than 50 hours of care a week are five times more likely to report that their health is 'not good'. There are an estimated 700,000 young carers in the UK; people who are under 18 who help look after someone in their family, or a friend, who are ill, disabled or misuse drugs or alcohol. The report highlights recommendations based on discussions with young carers, sector leaders and young carers services in the Carers Trust network. 'Invisible and in distress: prioritising the mental health of England's young carers' found that while young carers frequently report that their caring role can cause distress and impact on their mental health, there are gaps in support and there are barriers that prevent them from accessing the support that they need.

Key findings

  • Nearly half of the young carers in the survey (48%) said that being a young carer made them feel stressed and 44% said it made them feel tired.

  • A different survey of 61 young carers in school found that 38% had mental health problems.

  • The demands of their caring role and their family’s circumstances were often one of the reasons they found it difficult to access support, from the difficulty of arranging appointments without help from a parent, to worrying about revealing that they are “not good enough” to care for their family member.

  • The criteria for accessing Children and Adolescent Mental Health Services can discourage young carers from getting support so that problems become even harder to tackle and cause more harm.

Key recommendations

  • Caring roles amongst children and young people should be seen as a risk factor for their mental health.

  • NHS England, the Department of Health, mental health trusts and local authorities can implement frameworks developed by Carers Trust, such as the Young Carers in Schools programme or Triangle of Care for Young Carers to ensure that the right information and support is given to young carers. They should ensure that they meet their duties to support young carers under the Children and Families Act 2014 and Care Act 2014.

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Female family carers for survivors of stroke: occupational loss and quality of life

Purpose: This study examined activity changes in female carers for working-age husbands with mild to moderate stroke. It explored whether carers who reduced or quitted some of their valued activities had more burden and decreased health compared with other carers who continued their valued activities.

Method: This was a cross-sectional, quantitative self-report study. The Activity Card Sort measured reduction or termination of valued activities as a potential indicator of secondary strains, such as role captivity, constricted social life and loss of self. Outcomes were health-related quality of life and burden.

Findings: Eleven of the 20 participants reduced or quitted some of their valued activities. This change was labelled ‘occupational loss’. Several statistically significant differences were found: carers with occupational loss reported more primary stressors, higher levels of burden, less vitality and lower general mental health. No difference between groups was found for physical health.

Conclusion: Data from this study suggest that occupational loss may be related to deleterious outcomes for family carers. Further investigation with a larger sample and longitudinal design could explore the nature of that relationship to guide occupational therapy with this population.

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Burden of informal carers of mentally infirm eldery in Lancashire

OBJECTIVES: To compare the burden of supporting demented and non-demented mentally infirm elders in an English community; determine the prevalence of emotional distress in carers and to investigate the relationship between carer well being and duration of care giving.

DESIGN: Cross-sectional study of informal carers of the elderly referred to a psychogeriatric service, using a questionnaire investigating carer socio-demography, carer-dependant interpersonal relationship in relation to care giving and care-recipient dependency needs using a modified version of the CADI; and, the 28-item GHQ.

SETTING: Lancashire communities of Fleetwood, Thornton-Cleveleys, Poulton- Le-Fylde and Over-Wyre.

RESULTS: Ninety one (72%) carers of the elderly mentally infirm participated in the study. Carers (n = 48) of the demented experienced significantly more burden, including psychological and physical health problems than carers (n = 43) of the non-demented (P = 0.001). The prevalence of emotional distress in all carers was 42% (dementia supporters = 56%, non-dementia supporters = 26%). Emotional distress in supporters was directly related to the degree of difficulties (particularly lack of private time, loss of control in caregiving tasks, patient behavioural problems) experienced in care giving, and, the degree of patient dependency needs. Carer/patient interpersonal relationship tended to worsen as care giving progressed; however, no significant association was established between duration of care and emotional distress in carers. Out of 51 carers receiving respite admission services, six (12%) considered such admissions as additional burden.

CONCLUSIONS: Carer burden, including psychological and physical health concerns, was comparatively greater in carers of the demented than in carers of the non-demented. Respite care services although beneficial to most care givers, may constitute further burden to some. Factors accounting for these observations are explained. To ameliorate carer burden, measures enabling greateravailability of private time, and, improving care giving skills, should be encouraged.

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