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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,, 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:, 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: 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 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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