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Burden of care

The following resources examine the experience of caring as a burden.

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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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The Effects of Caring for Young Children with Developmental Disabilities on Mothers’ Health and Healthcare Use: Analysis of Primary Care Data in the Born in Bradford Cohort

We explored the association between caregiving for preschool children with developmental disabilities and maternal health and healthcare use using linked primary care and Born in Bradford birth cohort data. Adjusting for prenatal health, healthcare use and socioeconomic status, mothers who were caregivers were more likely than other mothers to have symptoms of psychological distress (odds ratio 1.24; 95% CI 1.01, 1.53), exhaustion (1.42; 1.12, 1.80) and possibly head and musculoskeletal pain (1.18; 0.97, 1.43). Despite the higher prevalence of symptoms, they did not access healthcare services more and may seek healthcare for psychological distress less often (0.64; 0.40, 1.02). In general, socioeconomic disadvantage was associated with worse health. Pakistani ethnicity (versus white British) and prenatal consultation were strongly associated with higher postnatal consultation rates. Prenatal ill health, healthcare use and socioeconomic status are important factors in the detection of postnatal ill health via primary care services. If caregiver burden and the risk of under-detecting (and thus under treating) caregiver ill health is not addressed during the preschool period health inequalities between caregivers and other mothers and their families may persist and grow. The health of mothers of young disabled children, in particular their unmet health needs, warrants attention in research and clinical practice.

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Family Burden After Out-of-Hospital Cardiac Arrest in Children

Objectives: To describe family burden among caregivers of children who survived out-of-hospital cardiac arrest and who were at high risk for neurologic disability and examine relationships between family burden, child functioning, and other factors during the first year post arrest.

Design: Secondary analysis of data from the Therapeutic Hypothermia after Pediatric Cardiac Arrest Out-of-Hospital trial.

Setting: Thirty-six PICUs in the United States and Canada.; Patients: Seventy-seven children recruited to the Therapeutic Hypothermia after Pediatric Cardiac Arrest Out-of-Hospital trial who had normal prearrest neurologic functioning and were alive 1 year post arrest.;

Interventions: Family burden was assessed using the Infant Toddler Quality of Life Questionnaire for children less than 5 years old and the Child Health Questionnaire for children 5 years old or older at baseline (reflecting prearrest status), 3 months, and 12 months post arrest. Child functioning was assessed using the Vineland Adaptive Behavior Scale II, the Pediatric Overall Performance Category, and Pediatric Cerebral Performance Category scales and caregiver perception of global functioning.

Measurements and Main Results: Fifty-six children (72.7%) were boys, 48 (62.3%) were whites, and 50 (64.9%) were less than 5 years old prior to out-of-hospital cardiac arrest. Family burden at baseline was not significantly different from reference values. Family burden was increased at 3 and 12 months post arrest compared with reference values (p < 0.001). Worse Pediatric Overall Performance Category and Pediatric Cerebral Performance Category, lower adaptive behavior, lower global functioning, and higher family burden all measured 3 months post arrest were associated with higher family burden 12 months post arrest (p < 0.05). Sociodemographics and prearrest child functioning were not associated with family burden 12 months post arrest.

Conclusions: Families of children who survive out-of-hospital cardiac arrest and have high risk for neurologic disability often experience substantial burden during the first year post arrest. The extent of child dysfunction 3 months post arrest is associated with family burden at 12 months.

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Feeding a child with cerebral palsy: parents' difficulties

Background: The nutritional status of children with cerebral palsy (CP) is an issue where nurses have a major responsibility towards children and their parents.

Objectives: To assess the weight, height and body mass index of children with CP; To identify the caregivers’ perception of the nutritional status of their child with CP; To identify the caregivers’ difficulties in feeding their child; To identify the association between family functionality and the child’s weight.

Methodology: Mixed study with a sample of 104 children and their father/mother (104). The Anthropometric Assessment Questionnaire was applied to parents. Results: About 45% of children were below the 5th percentile. Most caregivers were aware of their child’s weight-for-height deficit. These caregivers’ difficulties were related to food spilling out of the mouth, choking, and frequent vomiting.

Conclusion: A high percentage of children with CP have weight-for-height deficit. Caregivers are aware of this issue, indicating difficulties in feeding their children. The families of children with weight-for-height deficit are the most dysfunctional families.

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Correlates of Subjective Caregiver Strain in Caregivers of Youth Evaluated in a Pediatric Psychiatric Emergency Room

Background: Although caregiver burden is relevant to the outcome for psychiatrically ill youth, most studies have focused on caregiver burden in the community or research settings. Therefore, we aimed at evaluating the subjective caregiver strain (SCS) at the time of presentation of youth to a pediatric psychiatric emergency room (PPER), assessing potential correlates to provide leads for improvements in formal support systems.

Methods: In this retrospective cohort study, the internalized, externalized, and total SCS were assessed in caregivers of youth <18 years of age consecutively evaluated at a PPER during a 1 year period using the Caregiver Strain Questionnaire. Sociodemographic and a broad range of clinical data were collected during the PPER visit using a 12-page semistructured institutional evaluation form. The Appropriateness of Pediatric Psychiatric Emergency Room Contact scale, incorporating acuity, severity and harm potential, was used to rate appropriateness of the visit.

Results: In caregivers of 444 youth, the internalized SCS was significantly higher than the externalized SCS (p < 0.001). Multivariable analyses indicated that higher total and externalized SCS were associated with disruptive behavior or substance abuse/dependent disorder diagnosis, presenting complaint of aggression, and discharge plan to the police. Higher total and internalized SCS were associated with lower child functioning, whereas total and internalized SCS were lower in adopted children. In addition, higher externalized SCS was associated with investigator-rated inappropriateness of the emergency visit, presenting complaint of defiance, and a lack of prior psychiatric ER visits.

Conclusions: High levels of CS in PPER highlight the necessity to adhere to existing guidelines regarding the inclusion of caregivers' perceptions into comprehensive psychiatric assessments. The particularly high strain in caregivers of children with externalizing disorders and in families with low-functioning youth may need to prompt PPER staff to provide efficient information on appropriate treatment options for these children and on support facilities for the parents.

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The relationship between barriers to care, caregiver distress, and child health-related quality of life in caregivers of children with cancer: A structural equation modeling approach

The current study examined the relationship between demographic variables, treatment factors, and perceived barriers to care to both caregiver distress and caregiver-reported child health-related quality of life in caregivers of children diagnosed with cancer utilizing path analysis. Parental distress is examined as a potential mediator between barriers to care and income, as well as child age and caregiver-reported health-related quality of life (HRQOL). The final model demonstrated close fit to the data. Family income and perceived barriers to care demonstrated direct effects on caregiver distress. Child age, treatment intensity, severity of illness, and caregiver distress also demonstrated direct effects on caregiver-reported HRQOL. These results suggest a significant relationship between burden of care, caregiver functioning, and caregiver-reported child outcomes and support the transactional relationship between caregiver and child functioning.

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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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Impacts of caring for a child with the CDKL5 disorder on parental wellbeing and family quality of life

Background: Although research in this area remains sparse, raising a child with some genetic disorders has been shown to adversely impact maternal health and family quality of life. The aim of this study was to investigate such impacts in families with a child with the CDKL5 disorder, a newly recognised genetic disorder causing severe neurodevelopmental impairments and refractory epilepsy.

Methods: Data were sourced from the International CDKL5 Disorder Database to which 192 families with a child with a pathogenic CDKL5 mutation had provided data by January 2016. The Short Form 12 Health Survey Version 2, yielding a Physical Component Summary and a Mental Component Summary score, was used to measure primary caregiver's wellbeing. The Beach Center Family Quality of Life Scale was used to measure family quality of life. Linear regression analyses were used to investigate relationships between child and family factors and the various subscale scores.

Results: The median (range) age of the primary caregivers was 37.0 (24.6-63.7) years and of the children was 5.2 (0.2-34.1) years. The mean (SD) physical and mental component scores were 53.7 (8.6) and 41.9 (11.6), respectively. In mothers aged 25-54 years the mean mental but not the physical component score was lower than population norms. After covariate adjustment, caregivers with a tube-fed child had lower mean physical but higher mean mental component scores than those whose child fed orally (coefficient = -4.80 and 6.79; p = 0.009 and 0.012, respectively). Child sleep disturbances and financial hardship were negatively associated with the mental component score. The mean (SD) Beach Center Family Quality of Life score was 4.06 (0.66) and those who had used respite services had lower scores than those who had not across the subscales.

Conclusions: Emotional wellbeing was considerably impaired in this caregiver population, and was particularly associated with increased severity of child sleep problems and family financial difficulties. Family quality of life was generally rated lowest in those using respite care extensively, suggesting that these families may be more burdened by daily caregiving.

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The Effect of Barkley's family-oriented program on the burden of care on families of children with attention deficit-hyperactive disorder

Background: Attention deficit-hyperactive disorder (ADHD) is the most common behavioral disorders during childhood whose treatment is greatly dependent on families; therefore, families of such children should improve their relation with them so that they could enjoy their lives. Hence, this study was conducted to evaluate the effect of Barkley's family-oriented program on the burden of care on such families.

Materials and Methods: This clinical trial was conducted among 64 family care givers for children with ADHD. By simple sampling, samples passing the inclusion criteria were selected and randomly allocated into two groups of control and intervention. The intervention group received Barkley's family education program through 9 sessions; the control group participated in 3 group sessions and expressed their problems and experiences. Data were collected and analyzed using the Zarit Burden Interview.

Results: Burden of care was gradually reduced through the study in the intervention group, however, the mean score of burden of care did not have a significant reduction in the control group.

Conclusions: Because Barkley's family-oriented program was able to reduce the burden of care in families of children with ADHD, it is recommended to develop similar programs and evaluate them through various studies.

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Burden on parents of children with haemophilia: The impact of sociodemographic and child's medical condition

Aims and Objectives: To describe the perceived burden on parents of children with severe or moderate haemophilia and the impact of sociodemographic aspects and the child's medical condition on this.

Background: Parents of children with haemophilia face a multitude of demands. The child needs frequent intravenous injections, hospital visits, extra supervision and care. The child's illness and related management might have psychosocial effects on the parents.; Design: A multicentre, cross-sectional study.

Methods: Caregiver burden was evaluated in 102 parents of children with haemophilia, using the HEMOCAB questionnaire which consists of 54 items divided into 13 domains which are to be answered on a 5-point Likert scale. To assess the impact of sociodemographic aspects and clinical data on parental burden, linear regression analyses were undertaken. The study followed the STROBE checklist throughout the research process.

Results: Greater burden was seen in parents of children with past or present inhibitors, in parents of younger children, if a family member administered the clotting factor and in parents of children with overweight/obesity. No significant differences in burden were observed for type of haemophilia, if the child had bleeding in the past 12 months, if the child self-infused, had another family member with haemophilia or if the parent had more children.

Conclusions: Parental perceived burden can be negatively affected by the child's medical condition; our results underline that healthcare professionals need to be aware of increased parental burden if the child is young, has or had inhibitors and has overweight/obesity.

Relevance to Clinical Practice: More psychosocial support from the healthcare professionals needs to be directed towards parents of younger children and particularly the parents of young children with inhibitors, thus decreasing the parental burden. Parental burden may be reduced if healthcare professionals more actively treat overweight and refer children to appropriate specialists. 

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Impact of childhood Dravet syndrome on care givers of patients with DS, a major impact on mothers

Background: The aim of this study was to understand the impact of Dravet syndrome (DS) on patients with Dravet syndrome and their families, with a focus on the social and economic impact on both mothers and fathers.

Methods: A French language on-line survey was distributed (October 2014-January 2015) for completion by caregivers of patients aged <18 years with DS. The survey was hosted on the French Dravet Syndrome Alliance website, and the survey link was provided to patients and caregivers during clinics at the Necker Hospital (Paris, France).

Results: Survey responses were available for 91 patients (median age 7.6 years; 81.6% SCN1A mutation positive). Total seizure frequency was >2 per week for 16.1% of patients, 1-8 per month for 55.2% and < 1 per month for 28.7%; tonic-clonic and myoclonic were the most frequent seizure types. Patients showed various degrees of intellectual disability and DS had a high impact on concentration and school learning in 70.1% and 80.5%. In addition, patients showed appetite disorders in 73.6%, sleep disorders in 72.4% and behavior disorders in 62.1%. Most parents were married (80.5%) with higher rates than the French general population (53.5%). Educational achievement and socio-professional categories for the parents were higher than observed in the French general population, while monthly net income was similar. Preparation of medication was generally done by the mother and father (46.0% of patients) or the mother only (37.9%). Most caregivers reported very low or no difficulty with treatment preparation and low or no risk of error. Parents typically spent <30 min per day on treatment preparation and administration and around 4 h per week for attending therapy appointments. Although most patients and parents were perceived to have good general health, mothers had a worse perception of their own general health than fathers. Compared with fathers, mothers reported a greater impact of caring for a child with DS on their social life, relationships with family and friends, time and energy, and professional life. 

Conclusion: Families caring for a child with DS experience considerable social and economic impact, with an apparent greater burden of care on the mother than the father.

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An exploration of caregiver burden for children with nodding syndrome (lucluc) in Northern Uganda

Background: Caregivers of patients with chronic illnesses are often uncompensated for work that is physically demanding, time consuming and emotionally and economically draining. This is particularly true for caregivers of children with nodding syndrome, an emergent neurological disorder of unknown etiology in resource poor settings in Africa. We aimed to explore perceptions of caregivers regarding challenges that a typical caregiver faces when caring for a child with nodding syndrome.

Methods: We used a qualitative exploratory study design with focus group discussions and in-depth interviews to collect data. We analyzed data using the qualitative analysis software package of NVivo and thematic query building.

Results: Emergent themes centered on burden of care with emotional agony as the most prominent. Subthemes reflecting the burden of care giving included child and caregiver safety concerns, burnout, social isolation and rejection, and homicidal ideation. Caregivers also complained of physical and financial constraints associated with the care of children with nodding syndrome.

Conclusions: The findings point to a high burden of care for caregivers of children with nodding syndrome and suggests the need to incorporate community-based psychosocial and mental health care services for the caregivers of affected children into the national health system response.

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Determinants of care efficiency in a group of Polish parents raising children with different developmental disorders: a cross-sectional study

Objectives: Care efficiency of family can be determined by many factors such as mental and physical health status of family members and their socioeconomic situation. Raising children with disabilities is a burdening and stressful situation for their caregivers. This article examines determinants of care efficiency in a group of Polish parents raising children with developmental disorders.

Methods: The cross-sectional study was conducted in 9 Polish schools for disabled children located in Cracow. Questionnaire that included the Caregiver Burden Scale and the Scale Efficiency of Care was completed by 213 mothers and 30 fathers. During the data analysis parametric tests (e.g. ANOVA) and nonparametric tests (e.g. a Mann–Whitney U test, Kruskal–Wallis test) were used.

Results: Parents' care efficiency and burden of care were on an average level. Sociodemographic variables such as gender, age, place of residence, education and family structure were not related to the care efficiency. The relationship with housing and material conditions of the respondents was shown. The statistical analysis showed the relationship between the level of parents' care efficiency and all subscales of Caregiver Burden Scale. Parents who demonstrated a higher level of care efficiency experienced lower level of burden in areas such as General Strain, Isolation, Disappointment, Emotional Involvement and Environment.

Conclusions: Disability of a child reduces caring potential of a family. Parents experience more physical and mental fatigue, which aggravates their disappointment. It is important to make precise diagnosis of parents' care problems and implement an individualized program to help a family.

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Unsung heroes, flying blind-A metasynthesis of parents' experiences of caring for children with special health-care needs at home

Aims and Objectives: To aggregate, synthesise and interpret qualitative research studies of parents' experiences of caring for a child with special health-care needs at home.

Background: Advances in the field of medical and nursing science have ensured better survival rates for children with chronic illnesses. Many of these children have significant special health-care needs. Today parents assume a caregiver role, undertaking tasks previously provided by nurses in hospitals. As the complexity of care delivered by parents continues to develop, synthesised knowledge can provide an evidence base that will support and guide nurses when caring for these families.

Design: Metasynthesis.

Methods: Based upon a systematic search protocol, a structured literature search, covering the years 2003-2016, was conducted in five electronic databases. Ten studies were included and appraised using the Critical Appraisal Skills Program assessment tool. A metasummary and a metasynthesis were undertaken guided by the metasynthesis methodology as described by Sandelowski and Barroso (Handbook for synthesizing qualitative research. New York, NY: Springer, 2007).

Results: The results were interpreted and integrated under the overarching theme "unsung heroes, flying blind," supported by eight elucidating categories that illustrate aspects of the parents' life world.; Conclusions: The enormous burden of care can weaken the parents' will to carry on and result in a decreased ability to provide care. This can have an impact on the parents' health, family functioning and the sick child's potential health outcomes. Nurses are in a unique position to help these families and should be better prepared for the role.

Relevance to Clinical Practice: Knowledge of how parents of children with special health-care needs experience their daily lives can promote trust in nurses and guide them in their efforts to support families with children living with chronic illness.

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Estimating the Productivity Burden of Pediatric Pneumococcal Disease in Thailand

Background: Pneumococcal diseases were estimated to cause 1.6 million deaths annually worldwide in 2008, with approximately half of these occurring in children aged under 5 years. The consequences and deaths adversely impact individuals' and caregivers' work productivity.

Objectives: This study aimed to quantify the potential lifetime productivity loss due to pneumococcal diseases among the pediatric population in Thailand using productivity-adjusted life years (PALYs).

Methods: A decision analytic model was used to estimate the burden of pneumococcal diseases among the current Thai population aged 0-5 years and followed up until aged 99 years or death. Base-case analysis compared years of life and PALYs lost to pneumococcal diseases. Scenario analyses investigated the benefits of prevention with pneumococcal conjugated vaccine 13 (PCV 13). All health outcomes were discounted at 3% per annum.

Results: The base-case analysis estimated that 453,401 years of life and 457,598 PALYs would be lost to pneumococcal diseases, equating to a loss of US$5586 (95% CI 3338-10,302) million. Vaccination with PCV13 at birth was estimated to save 82,609 years of life and 93,759 PALYs, which equated to US$1144 (95% CI 367-2591) million in economic benefits. The incidence of pneumonia in those aged 0-4 years, vaccine efficacy, and the assumed period of protection were key determinants of the health economic outputs.

Conclusions: The disease and financial burden of pneumococcal diseases in Thailand is significant, but a large proportion of this is potentially preventable with vaccination.

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Corticosteroid phobia among parents of asthmatic children

Corticosteroid phobia among parents of asthmatic children. Turk J Pediatr 2018; 60: 142-146. Asthma is one of the most prevalent chronic diseases among children. Its prevalence and morbidity have been rising in recent decades. Pediatric asthma causes a significant burden on families; allergen-avoidance measures, uncontrolled disease, and disease severity which are the major cost predictors of childhood asthma in Turkey. Inhaled corticosteroids (ICS) are considered as cornerstone medications in asthma management which reduce asthma morbidity and mortality. Our aim was to address corticosteroid phobia in caregivers of asthmatic children and its impact on asthma management. Five hundred caregivers of asthmatic children were interviewed using structured questionnaire in this study. Over fifty percent of the caregivers (56.8%), most of whom (82.6%) are already aware of using corticosteroids in their anti-asthma drug regimen, mentioned that they are afraid of using them. Almost one fourth of caregivers (24.8%) made either some changes in their treatment regimen or stopped using the drugs due to corticophobia. Of the caregivers 55.2% had no idea about the side effects of corticosteroids and only 12.6% of them mentioned that they were informed by their physicians about the effects of corticosteroids. Any change in asthma treatment regimen due to corticophobia was found to be related with poor asthma control level (p: 0.004). The impact of parental information about the effects and importance of steroids given by the physicians on better asthma control was found to be highly significant (p < 0.001). That`s why physicians and health care providers should spend enough time explaining the importance of adherence to treatment in asthma management, which may help in overcoming the fear of using ICS.

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The challenges of caring for children who require complex medical care at home: ‘The go between for everyone is the parent and as the parent that’s an awful lot of responsibility’

Background: Increasing numbers of children with complex health‐care needs are cared for at home by their family. The aim of this qualitative study was to explore the challenges experienced by families caring for children who need complex medical care at home.MethodsWe conducted a thematic analysis of eleven in‐depth interviews with parents who carry out specialist medical procedures (eg, enteral feeding, bowel washouts and tracheostomy care) for their children at home. Participants were purposely selected from an existing sample of interviews with parents whose child had abdominal surgery in the first year of life.

Results: We identified three overarching themes: (a) responsibilities of the parent, (b) impact on daily life and (c) the parent journey over time. Parents have substantial responsibilities, including performing medical procedures, managing emergencies (sometimes life‐threatening), co‐ordinating care and advocating for their child. Their responsibilities have an enormous impact on the family: going out of the home becomes a challenge, there are constant constraints on time, parents are sleep‐deprived and there are wider impacts on siblings. The third theme explores the parent journey over time as parents become experts and make sense of the new normal.

Discussion: The burden of care on families caring for children with complex medical needs is much greater than is generally understood by either multidisciplinary health‐care teams or the general public. Families need to be better prepared and supported for the responsibilities they take on and the burden of care needs to be shared by others.

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Time burden of caring and depression among parents of individuals with cerebral palsy

Purpose: The presence of an individual with disability in a family affects the whole family. Families of individuals with cerebral palsy (CP) experience increased psychological anxiety and financial problems; specifically, parents tend to feel time pressure and struggle to maintain their social and cultural activities.

Methods: t-Tests and ANOVA with post hoc Tukey tests were used to compare caregiving time, time pressure, and depression between parents. Multivariate logistic regression analysis was used to examine the effect of caregiving time and time pressure on depression in parents.

Results: Regarding depression, 58 (38.2%) respondents scored ≥16 on the Center for Epidemiological Studies – Depression scale. Respondents supporting a preschool child spent more time than those supporting adults did; those supporting adults reported less time pressure than those supporting individuals of other ages. Caregiving time's effect on depression was not supported, whereas increased time pressure raised the risk of depression.

Conclusions: The frequency of depression among parents supporting individuals with CP exceeded preceding findings. Time pressure due to support appears to directly predict depression. Total time spent caring appears unrelated to depression. It is necessary to prepare various community and family support systems in order to relieve parental caregivers' burden and exhaustion. Interventions should focus on parents with higher time pressure than parents with high caregiving time. Physical and psychological difficulties experienced by parents supporting a child with a disability vary with the child's life stage, meaning that families' care burden partly depends on the age of the individual with disabilities. 

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Home Gastrostomy Feeding Education Program: Effects on the Caregiving Burden, Knowledge, and Anxiety Level of Mothers

Background: It is highly important for healthcare professionals to give discharge education to families to increase their knowledge of gastrostomy care and complications and to inform them about the correct behaviors. The purpose of the present descriptive pretraining and posttraining evaluation study was to investigate the effects of a standardized, evidence-based discharge education program prepared for children with gastrostomy tubes on the caregivers' knowledge, anxiety levels, and caregiving burden.

Methods: The primary caregivers of children with a gastrostomy tube (n = 30) were interviewed on the first day of the education program and the first week and third month after the program, and a pretest/posttest, the Zarit Caregiver Burden Scale and the State-Trait Anxiety Inventory were applied. Complications were determined by assessing the number of unplanned clinic visits and complications in the study group compared with the historical control group (historical comparison; n = 30).

Results: The study revealed that the knowledge levels of mothers increased in the first week and third month after training, and their caregiving burden and state-trait anxiety levels significantly decreased. Although some complications arising from the enteral nutrition process were observed, it was found that the complications were fewer, and the difference was statistically significant compared with the group that did not receive the standardized, evidence-based discharge education program.

Conclusion: The standardized education program should be recommended because caregivers managed the home care process more successfully, and the stress, anxiety, and difficulties experienced during homecare decreased. 

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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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School satisfaction in parents of children with severe developmental disabilities

Background: Previous research suggests parents' level of satisfaction with their child's school experience is highly variable. The present author explored school satisfaction in a Canadian sample of parents of children with severe and often complex developmental disabilities.

Method: Parents of 185 children completed questionnaires regarding their satisfaction with nine aspects of their child's school experience. Satisfaction was examined in relation to child's age, diagnosis of Autism, adaptive level, and maladaptive behaviour; parents' mental health difficulties and perception of caring burden; and the child's classroom type and level of clinical services at school.

Results: School satisfaction was unrelated to parents' mental health or burden scores, was related to child's adaptive and maladaptive behaviour, as well as type of classroom placement.

Conclusions: It is important to understand what aspects of the school experience are influential for different children and families so that their experience can be optimized as far as possible. 

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Emotional symptoms and family functioning in caregivers of children with newly diagnosed leukemia/lymphomas and solid tumors: Short-term changes and related demographic factors

Background: Pediatric oncology diagnoses are distressing to caregivers. However, researchers have not investigated the impact that the type of cancer diagnosis has on caregiver anxiety, depression, distress, and family functioning. The purpose of this study was to longitudinally investigate the early trajectory of caregiver psychological symptoms of anxiety, depression, distress, and family functioning near diagnosis and 6 months later by cancer type, and to examine the demographic factors that may be associated with caregiver emotional and family functioning outcomes. 

Methods: Caregivers (n = 122) of children with a recent diagnosis of leukemia/lymphoma or solid tumor completed self-report measures of psychological and family functioning (Hospital Anxiety and Depression Scale, Distress Thermometer, and Family Environment Scale).

Results: In general, caregivers endorsed elevated psychological symptoms at the time of diagnosis, which decreased 6 months later. Caregivers of children with solid tumors endorsed greater anxiety across time than caregivers of children with leukemia/lymphoma did. In addition to caring for a child with a solid tumor, female sex, non-White ethnicity, and non-English language spoken in the home were factors associated with anxious and depressive symptoms and poorer family functioning.

Conclusion: When creating psychosocial interventions for families of children with cancer, the unique demands of solid tumor treatments, the caregiver's sex, and cultural characteristics must be considered to promote coping, resiliency, and problem-solving skills around the time of diagnosis, particularly in more vulnerable families. 

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Talking with caregivers of children living in the community with ventricular assist devices

A VAD is a mechanical pump used to support the functioning of a failing heart. As a pediatric therapy, a VAD is used as a temporary solution for poor heart function, a bridge to transplantation or recovery, or a destination therapy. The goal of this qualitative study was to explore the perspectives of family and professional caregivers of children who are supported by VADs in outpatient settings. Semi-structured interviews were conducted with 22 caregivers of school-aged children discharged home on VAD support. Interviews were transcribed, and data were analyzed using qualitative content analysis. Caregivers identified issues facing children on VAD support in the contexts of home, school, and other childhood places including being physically connected to a device; experiencing changes; living a medical life; negotiating restrictions; cost of care; family, kinship, and community; and, present and future living. While a child with a VAD may have much in common with other medically complex children, the technological complications and risks of living with a VAD are uniquely identified by caregivers as an issue, especially when considering the way that children with a VAD are connected to their device-implanted yet exterior, mobile yet restricted, and autonomous yet dependent. 

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Caring for the Caregiver: Supporting Families of Youth With Special Health Care Needs

Caregivers of youth with special health care needs (YSHCN) are a critical part of the health care team. It is important for pediatric providers to be cognizant of the burden and strain caregiving can create. This article will discuss the health, psychological, social, and financial effects of caregiving, as well as strategies to screen for caregiver strain among families of YSHCN. Caregivers of YSHCN, for example, are more likely to report poor health status and demonstrate higher rates of depression and anxiety. Numerous validated screens for caregiver strain have been developed to address the multi-faceted effects of caregiving. Finally, we will discuss strategies to alleviate caregiver strain among this vulnerable population. We will describe services pediatric providers can encourage caregivers to utilize, including financial support through Supplemental Security Income (SSI), benefits available through the Family Medical Leave Act (FMLA), and options for respite care. Addressing caregiver strain is an important aspect of maintaining a family centered approach to the care of YSHCN. 

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Caregiving burden of children with chronic diseases

Background: The care demands of children with chronic diseases can affect caregivers' health by imposing caregiving burden to them. The health status of caregivers plays a vital role in the quality of care provided to such children and in their quality of life.; Objective: To determine caregiving burden in caregivers and to identify relevant influential factors.

Methods: In this cross-sectional study, a total number of 249 caregivers of children with chronic diseases who referred to hospitalization and ambulatory departments of Bandar Abbas, Iran in 2016 were selected using convenience sampling method. The main caregivers who were older than 18 years and provided care to a sick child for at least three months consecutively were included. Caregiving burden was measured using the Caregiver Burden Scale. Data was analyzed SPSS 16 using descriptive statistics, Spearman's correlation coefficient and Mann-Whitney U test.

Results: Mean score of caregiving burden was 1.98 which was close to moderate level. The highest caregiving burden was observed in general strain dimension (2.35), and cerebral palsy imposed the maximum burden to caregivers (2.24). Correlation coefficient revealed that perceived caregiving burden was in connection with children's and caregivers' age, duration of disease and caregiving, child's level of disability, number of family members and income level (p<0.05). Mann-Whitney U test showed that female caregivers, villagers, and caregivers dealing with more than one patient experienced higher burden (p<0.05).

Conclusion: Different variables can increase caregiving burden. Therefore, planning for holistic and family-centered interventions to decrease caregiving burden is necessary for health care providers.

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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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Barriers and Facilitators of Asthma Management as Experienced by African American Caregivers of Children with Asthma: An Integrative Review

African American children with asthma demonstrate significant health disparities and poor health outcomes. Understanding the burdens faced by parents and caregivers of children with asthma may be helpful to develop future interventions to address this disparity. The purpose of this integrative review was to reveal the barriers and facilitators of child asthma management experienced by African American caregivers. Whittemore and Knafl's (2005) method of integrative review was used to review 40 articles. The integrative review involved appraising the quality of the literature, conducting a thematic analysis, and evaluating the barriers and facilitators of pediatric asthma management experienced by African American caregivers. Barriers and facilitators were identified as themes. Barriers included caregiver burdens, and lack of home and neighborhood safety. Facilitators were family and community support, education and empowerment, and culturally competent healthcare providers. To improve the care of African American children with asthma, nurses should work to engage, communicate, and foster trust with families. Nurses should assess and address the family caregivers' burdens while emphasizing support systems.

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Health care and societal costs of the management of children and adolescents with attention-deficit/hyperactivity disorder in Spain: a descriptive analysis

Background: Attention-deficit/hyperactivity disorder (ADHD) is a common neurodevelopmental condition in childhood (5.3% to 7.1% worldwide prevalence), with substantial overall financial burden to children/adolescents, their families, and society. The aims of this study were to describe the clinical characteristics of children and adolescents with ADHD in Spain, estimate the associated direct/indirect costs of the disorder, and assess whether the characteristics and financial costs differed between children/adolescents adequately responding to currently available pharmacotherapies compared with children/adolescents for whom pharmacotherapies failed.

Methods: This was a multicenter, cross-sectional, descriptive analysis conducted in 15 health units representative of the overall Spanish population. Data on demographic characteristics, socio-occupational status, social relationships, clinical variables of the disease, and pharmacological and non-pharmacological treatments received were collected in 321 children and adolescents with ADHD. Direct and indirect costs were estimated over one year from both a health care system and a societal perspective.

Results: The estimated average cost of ADHD per year per child/adolescent was €5733 in 2012 prices; direct costs accounted for 60.2% of the total costs (€3450). Support from a psychologist/educational psychologist represented 45.2% of direct costs and 27.2% of total costs. Pharmacotherapy accounted for 25.8% of direct costs and 15.5% of total costs. Among indirect costs (€2283), 65.2% was due to caregiver expenses. The total annual costs were significantly higher for children/adolescents who responded poorly to pharmacological treatment (€7654 versus €5517; P = 0.024), the difference being mainly due to significantly higher direct costs, particularly with larger expenses for non-pharmacological treatment (P = 0.012).

Conclusions: ADHD has a significant personal, familial, and financial impact on the Spanish health system and society. Successful pharmacological intervention was associated with lower overall expenses in the management of the disorder.

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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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The Lived Experience of Parents of Children with Special Healthcare Needs on Public and Private Insurance: A Phenomenological Study

Due to recent advances in medical technology, the number of children with special healthcare needs (CSHCN) is steadily growing in the United States. CSHCN comprise more than 40% of overall healthcare costs nationwide, even though this group is only comprised of 16% of the U.S. child population. There are significant differences between private and public health plans in terms of cost, adequacy, and parent satisfaction. As an added benefit, some public and private health insurance plans offer nursing care coordination (or nursing case management) services. The purpose of this study was to understand the experiences of parents of CSHCN enrolled in public and private insurance with or without a nurse care coordinator assigned. A phenomenological approach was used. One-to-one semi-structured interviews were conducted with 16 participants. Colaizzi’s (1978) eight steps of data analysis was the selected methodological interpretation. Five themes emerged from this study: Struggle with Self- Preservation, Abandonment and Isolation, Self-Reliance and Advocate, Interdependence, and Lifeline. These study findings highlighted the major differences with parents navigating their child’s health insurance. These differences were dependent on the type of insurance and sources of support available. The experience of parents with a nurse care coordinator differed from parents without a nurse. Parents of CSHCN enrolled in public insurance with a nurse care coordinator considered the nurse to be a primary source of support. These nurses were instrumental in solving problems with the public health plan. On the contrary, parents with CSHCN enrolled in private insurance without a nurse care coordinator carried this additional burden. There were also noticeable differences in parents’ satisfaction with the adequacy and cost of their child’s health insurance. Parents of CSHCN enrolled in private insurance voiced dissatisfaction with higher costs associated with their child’s plan. Meanwhile, parents of CSHCN enrolled in Medicaid expressed that out-of-pocket expenses were covered. Results from this study can be used to make policy changes by insurance companies. Incorporating nursing care coordination not only results in healthcare savings for the health plan but improved health outcomes for its members as well.

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Perceived discrimination and self-esteem among family caregivers of children with autism spectrum disorders (ASD) and children with intellectual disabilities (ID) in Spain: The mediational role of affiliate stigma and social support

Background: People with autism spectrum disorders (ASD) and people with intellectual disabilities (ID) are stigmatized, and therefore discriminated against worldwide and, on many occasions, this stigma and discrimination are expanded to include their family caregivers. The main objective of this research was to examine the consequences of perceived discrimination on family caregivers of children with ASD and children with ID.

Methods: The sample consisted of 109 Spanish caregivers of children with ASD and 83 caregivers of children with ID. They completed four questionnaires: Multidimensional Perceived Discrimination Scale, Affiliate Stigma Scale, Social Support Questionnaire and Rosenberg Self-Esteem Scale.

Results: Using path analysis, we found support for a model in which personal discrimination perceived by caregivers was positively associated with affiliate stigma, which, in turn, was negatively related to caregivers' self-esteem. The model also shows the total mediational role of affiliate stigma in the association between perceived discrimination and self-esteem and the partial mediational role that social support plays in the association between perceived discrimination and caregivers' self-esteem.

Conclusions: Caregivers' perceived discrimination negatively influences caregivers' self-esteem, but this relationship is mediated by both affiliate stigma (totally) and social support (partially). These results have theoretical and practical implications and may contribute to improving the quality of life of parents of children with ASD and ID that in turn would result in an improvement of the quality of life of their children.

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Pediatric Traumatic Brain Injury: Families and Healthcare Team Interaction Trajectories During Acute Hospitalization

Purpose: To identify common or unique family-healthcare team interactions during acute hospitalization for pediatric patients with a traumatic brain injury (TBI) using a life course trajectory (LCT) theoretical approach.

Design and Methods: A 3-year prospective observational study of 35 children, ages 5 days to 15 years who were admitted to an urban Level-1 trauma hospital for a TBI. We defined brain injury severity using the admission Glasgow Coma Scale score (mild 13-15, moderate 9-12, and severe 3-8). Using a life course trajectory theoretical approach, we extracted from the patient's electronic health record the first eight-days of hospitalization and plotted the number and type of daily family-healthcare team interactions to visualize patterns or phases.

Results: A general trajectory for each severity group was determined. When individually compared, family trajectories were similar based on injury severity. Visual interpretations of family-healthcare interactions based on the brain injury severity yielded three phases. The interactions phases included: (1) information seeking, (2) watchful waiting and (3) decision making.

Conclusion: Using a LCT approach, phases identified based on injury severity and family interactions support the need for proper timing of tailored communication and support. The findings also support the development of future best care practices that facilitate family's needs, decrease caregiver burden to improve functional outcomes. 

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Being a dad to a child with Down’s syndrome: Overcoming the challenges to adjustment

Background: Historically, research exploring the impact of having a child with an Intellectual Disability (ID), has focussed exclusively on mothers. The present study aimed to investigate fathers’ experiences of parenting a child with Down's syndrome (DS), their contributions, influences on family functioning and inclusion in their child's support provision.

Method: Semi‐structured interviews were conducted with 15 fathers. Interviews were analysed using Grounded Theory (GT).ResultsFathers’ adjustment appeared to be on a fluid trajectory with three key categories influencing this: “Accommodating the Child,” “Adapting the Parental/Spousal Role” and “Adapting Society.”

Conclusions: The accounts uncovered fathers’ adjustment trajectory to parenting a child with DS, concluding that despite practical and emotional challenges, fathers employed strategies to achieve positive adjustment. Fathers identified the need for services to recognize their role and involve them in their child's support provision. Implications for clinical practice and future research are discussed.

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Evaluation of family management of an adolescent with sickle cell disease

Objective: to describe the experience of the family management of an adolescent with sickle cell disease.

Method: case study, which used the theoretical model of the Family Management Style Framework (FMSF). Data was collected through interviews with the mother and documental analysis and, previously, being submitted to hybrid thematic analysis.

Results: the family defines that they are adapted to the situation. The management behaviors are shaped according to the unpredictability of the disease, which, consequently lead to a "fighting" management style.

Conclusion: the mother is the main caregiver of the adolescent, is overloaded, and presents difficulties regarding the therapeutic regimen. Mother and daughter are afraid of the disease, which contributes to the low self-esteem of the adolescent, limiting it in the performance of activities, and both are with impaired quality of life.
 

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Initial Challenges of Caregiving During COVID-19: Caregiver Burden, Mental Health, and the Parent-Child Relationship

Research confirms that the mental health burdens following community-wide disasters are extensive, with pervasive impacts noted in individuals and families. It is clear that child disaster outcomes are worst among children of highly distressed caregivers, or those caregivers who experience their own negative mental health outcomes from the disaster. The current study used path analysis to examine concurrent patterns of parents' (n = 420) experience from a national sample during the early months of the U.S. COVID-19 pandemic. The results of a multi-group path analysis, organized by parent gender, indicate good fit to the data [X2(10) = 159.04, p < .01]. Results indicate significant linkages between parents' caregiver burden, mental health, and perceptions of children's stress; these in turn are significantly linked to child-parent closeness and conflict, indicating possible spillover effects for depressed parents and compensatory effects for anxious parents. The impact of millions of families sheltering in place during the COVID-19 pandemic for an undefined period of time may lead to unprecedented impacts on individuals' mental health with unknown impacts on child-parent relationships. These impacts may be heightened for families whose caregivers experience increased mental health symptoms, as was the case for fathers in the current sample. 

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Aggression in Autism Spectrum Disorder: Supporting the Entire Family

Case: Juanita is a 13-year-old non-verbal Latina girl with autism spectrum disorder, moderate intellectual disability, and a seizure disorder whose aggressive behaviors toward her parents have significantly worsened over the past few months.Juanita's monolingual Spanish-speaking parents are here today for medication management at her primary care clinic. The parents report that Juanita pinches them, pulls their hair, and hits her head with her fists. Her aggression toward them is usually triggered by feelings of frustrations, leaving her parents feeling like they have to walk on eggshells around her and have led to differing parenting styles. Her father reports that he tries to avoid getting her upset and prefers to watch TV with her, whereas her mother takes on the day-to-day caretaking. Although he wants to take a more active role in parenting Juanita, when he tries, Juanita becomes more aggressive and reacts violently toward him. During the visit, Juanita keeps her eyes downcast, is withdrawn, and some strain is noted between her parents. While speaking to them, Juanita's mother chimes in and reports that she considers herself the primary caregiver and the one who knows her daughter the best. She often dismisses Juanita's father's reporting, saying that "he doesn't know what really is going on." When Juanita is taken to the restroom by her mother, her father tearfully reports that he feels that it may be best for everyone that he leaves the family because of Juanita's worsening aggression toward him and the toll it is taking on his marriage. How would you approach her management?

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Measuring the impact of dermatological conditions on family and caregivers: a review of dermatology-specific instruments

The patient is the centre of a web of relationships, and the impact of his/her disease on family members and caregivers must be taken into account. The aim of this study was to identify the specific instruments that measure the impact of a dermatological disease on the quality of life (QoL) of family members, by performing a systematic search of the literature. Fifteen papers were identified, describing the creation and validation of nine instruments. Four of them concerned atopic dermatitis (Dermatitis Family Index, DFI; Parents' Index QoL Atopic Dermatitis, PiQoL-AD; QoL in primary caregivers of children with atopic dermatitis, QPCAD; Childhood Atopic Dermatitis Impact Scale, CADIS), two measured the impact of psoriasis in family members (Psoriasis Family Index, PFI; FamilyPso), one the impact of epidermolysis bullosa (Epidermolysis Bullosa Burden of Disease, EB-BoD), one of ichthyosis (Family Burden Ichthyosis, FBI), and one was generic for dermatological conditions (Family Dermatology Life Quality Index, FDLQI). The European Academy of Dermatology and Venereology quality of life taskforce recommends that the impact of a skin disease on family and caregivers should be measured as part of any thorough evaluation of the burden of a disease. Guidelines are given to choose the most appropriate instruments.

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Measuring hemophilia caregiver burden: validation of the Hemophilia Caregiver Impact measure

Aims: The purpose of this article is to describe the psychometric development of the Hemophilia Caregiver Impact measure.

Methods: Qualitative interviews (n = 22) and a cross-sectional web-based study (n = 458) were implemented with caregivers of people with hemophilia. Classical test theory and item response theory analyses were implemented to evaluate the psychometric characteristics of the measure.

Results: The study sample had a mean age of 39 and a median level of college education. It was predominantly female (88%), and had an average of two children. 85% of this study sample had at least one child with hemophilia. The final 36-item Hemophilia Caregiver Impact measure is composed of seven subscales assessing relevant negative aspects of caregiver impact (Burden Summary) as well as one subscale reflecting a positive aspect of caregiver impact (Positive Emotions). These two summary scores are orthogonal and can be used together in analyses examining negative and positive aspects of caregiver impact. The items included within each subscale reflect a unidimensional construct, demonstrate good item information and trace lines, and lack of local dependence. The resulting subscales demonstrate high reliability, and good construct validity. They show moderate incremental and discriminant validity. 

Conclusions: The Hemophilia Caregiver Impact measure is a useful new tool for clinical research on hemophilia. In addition to having eight relevant subscales, the measure can also be summarized with two scores. This versatility can be useful in analyzing studies with very small samples, which is to be expected when dealing with a rare condition like hemophilia.

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The quality of life of home-ventilated children and their primary caregivers plus the associated social and economic burdens: A prospective study

Background: Despite the obvious challenges faced by families caring for children on home ventilation, there is surprisingly little research into the details of their daily lives. In particular, little is known about the quality of life of the child and caregiver plus the associated social and economic burdens of care.

Methods: We prospectively studied 90 families enrolled in a paediatric home ventilation service in British Columbia. In the clinic, we recorded demographic information, patient acuity score and quality of life for patient and caregiver using standardised questionnaires. Parents then monitored social and financial costs of care at home over the subsequent 8 weeks. These data were collected by telephone at 1 and 2 months.

Results: Most children led rich active lives. Camping trips, wheelchair sports and foreign travel were the norm, not the exception. Over 90% assessed the burden of care as mild or moderate. Government support covers medical expenses and home nursing (median 32 h/week, IQR 0-62.5 h). Monthly unreimbursed family expenses were low (median $87.7, IQR $15.3-$472). Despite this, nearly 25% of primary caregivers assessed burden of care as severe and over 50% had chronic illnesses requiring daily medication (principally depression, anxiety and arthritis). Quality of life for children or caregivers did not correlate with income or education. Interpretation Home ventilation of complex children is a successful strategy but it places significant strain on the primary caregiver. Specific attention to the physical and mental health of the caregiver should be an integral part of the management of home-ventilated children. 

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When children with profound multiple disabilities are hospitalized: A cross‐sectional survey of parental burden of care, quality of life of parents and their hospitalized children, and satisfaction with family‐centered care

Purpose: We aimed to assess parental burden of care, satisfaction with family‐centered care, and quality of life (HRQoL) of parents and their hospitalized children with profound intellectual and multiple disabilities (PIMD), and determine the relationship among these factors.

Design: A cross‐sectional study using printed questionnaires and qualitative questions was undertaken at a Swiss University Children's Hospital.

Results: The 117 parents (98 mothers, 19 fathers) studied indicated a substantial impact on burden of care and parental health‐related quality of life. Significant correlations with the hospitalized children's well‐being were rs = .408 for burden of care and rs –.368 for quality of life. Qualitative results showed parents struggling to safeguard their children and worrying most about the children's well‐being.

Practice Implications: Health professionals need to be aware of parental burden and that the perception of the children's well‐being and the parents' efforts determine their support needs. Easing parents’ burden and fostering confidence in the hospitalized children's well‐being requires coordination of care provided by advanced nurse specialists, with an institutional framework that clarifies parental collaboration.

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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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Analysis of the caregiver burden associated with Sanfilippo syndrome type B: panel recommendations based on qualitative and quantitative data

Background: Sanfilippo syndrome type B (Sanfilippo B) belongs to a group of rare lysosomal storage diseases characterized by progressive cognitive decline from an early age, acute hyperactivity, and concomitant somatic symptoms. Caregivers face a unique set of challenges related to the complex nature of Sanfilippo B, but the burden and impact on quality of life (QoL) of caregivers is poorly defined and best practice guidance for clinicians is lacking.

Methods: An international clinical advisors meeting was convened to discuss key aspects of caregiver burden associated with Sanfilippo B based on findings from qualitative and quantitative research undertaken to identify and quantify the nature and impact of the disease on patients and caregivers. 

Results: Providing care for patients with Sanfilippo B impinges on all aspects of family life, evolving as the patient ages and the disease progresses. Important factors contributing toward caregiver burden include sleep disturbances, impulsive and hyperactive behavior, and communication difficulties. Caregiver burden remained high throughout the life of the patient and, coupled with the physical burden of daily care, had a cumulative impact that generated significant psychological stress.

Conclusion: A Sanfilippo-specific QoL questionnaire is needed that is directed at caregiver needs and burden and best practice management of these domains.

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Quality of Life in Caregivers of Patients With Cystic Fibrosis: An Integrated Literature Review

Cystic fibrosis (CF) is a life-shortening genetic disease with many treatment requirements that necessitate the participation of a caregiver, especially if the patient is a child. We performed an integrated literature review of original research evaluating quality of life in caregivers of patients with CF. We searched the terms quality of life, cystic fibrosis, and caregivers in the MEDLINE, CINAHL, Child Development and Adolescent Studies, PsycARTICLES, and Psychology and Behavioral Sciences Collection databases from 2007 to 2017. Nine articles were included and showed that caregiver quality of life is affected by caring for a child with CF as evidenced by high rates of anxiety and depression. Anxiety and depression in caregivers affects adherence to the child's treatment regimen, causing detrimental effects on the health of the child. Screening for depression and anxiety and referral for treatment when necessary are needed to optimize family health. Findings include 1) CF has numerous treatment burdens for caregivers, 2) rates of anxiety and depression are two to three times higher in caregivers of patients with CF than in the general population, 3) depressed parents are less likely to adhere to their child's treatment regimen, and 4) few CF families report having received mental health screening or treatment.

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Burden of Care Among Mothers Having Children with Congenital Heart Diseases

Introduction: Congenital Heart Disease (CHD) is a problem with structure and function of the heart that is present at birth. Children with CHD require special care, treatment and follow up for a number of common conditions which may be quite straining to the care givers. The objective of the study was to find out the burden of care among mothers having children with CHD.

Methods: This descriptive cross-sectional study was carried out in a cardiac centre of Nepal. A total of 95 mothers having children with CHD attending outpatient department of our institute were selected as the sample for the study using non-probability purposive sampling technique. A semi structured interview questionnaire consisting of the Modified Caregiver Strain Index was used to assess the burden of care among mothers having children with CHD. Frequency and percent were used to describe the variables and chi- square test at 0.05 significance level was used to analyse associations.

Results: Most (77.9%) of the mothers were regularly strained to find that their children's health condition was deteriorating due to CHD. Nearly half (44.2%) of the mothers always had financial constrain while giving care to the child, nearly half (40%) of the mothers had done emotional adjustments to take care of their children with CHD, another two-fifths (28.4%) of the mothers sometimes had disturbed sleep and almost half (46.3%) of the mothers were always upset due to some behaviour of their child with CHD. Half (50.5%) of the mothers had high level of burden of care. Statistically significant association were found between age of the mother and level of burden of care (p value = 0.05). Similarly, the type of family (p value = 0.005), age of the children (p value = 0.000) and type of CHD (p value = 0.002) were significantly associated with the level of burden of care among the mothers.

Conclusion: The study concluded that mothers tend to feel less burden of care as the child grows older, mothers having children with cyanotic heart disease tend to experience more burden of care. 

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Satisfaction With Care Coordination for Families of Children With Disabilities

Introduction: Children with disabilities have significant health care needs, and receipt of care coordinator services may reduce caregiver burdens. The present study assessed caregivers' experience and satisfaction with care coordination.

Method: Caregivers of Medicaid-enrolled children with disabilities (n = 2,061) completed a survey (online or by telephone) collecting information on the caregivers' experiences and satisfaction with care coordination using the Family Experiences with Coordination of Care questionnaire.; Results: Eighty percent of caregivers with a care coordinator reported receiving help making specialist appointments, and 71% reported help obtaining community services. Caregivers who reported that the care coordinator helped with specialist appointments or was knowledgeable, supportive, and advocating for children had increased odds of satisfaction (odds ratio = 3.46, 95% confidence interval = [1.01, 11.77] and odds ratio = 1.07, 95% confidence interval = [1.03, 1.11], respectively).

Discussion: Findings show opportunities for improving care coordination in Medicaid-enrolled children with disabilities and that some specific elements of care coordination may enhance caregiver satisfaction with care. 

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The burden of systemic juvenile idiopathic arthritis for patients and caregivers: an international survey and retrospective chart review

Objectives: To investigate the burden of systemic juvenile idiopathic arthritis (SJIA) on health-related quality of life (HRQOL) and resource use of patients and caregivers (families) on biologic therapy.

Methods: This international study assessed SJIA burden in patients on biologics, using a caregiver questionnaire and retrospective chart review. Validated measures included: Child Health Questionnaire Parent-Form 50 (CHQ-PF50), 36-Item Short-Form Health Survey (SF-36v2) and Work Productivity and Activity Impairment questionnaire: Specific Health Problem (WPAI:SHP). Caregivers completed function, treatment satisfaction and resource utilisation questions. 

Results: Sixty-one biologic treated patients participated (12 anakinra, 25 canakinumab, 24 tocilizumab). Mean age at diagnosis and survey completion was 6.4 and 11.3 years, respectively. Mean (±SD: standard deviation) CHQ-PF50 physical (PhS) and psychosocial (PsS) summary scores were significantly lower in SJIA patients than a normative population (PhS: 40.0±18.2 vs. 53.0±8.8; PsS: 46.6±11.3 vs. 51.2±9.1) as was caregivers' mean SF-36v2 mental component score (MCS; 46.2±10.7 vs. 50.0±10). Assistive devices were required by 54%; 20% required home/car alterations. According to caregivers, biologic treatment completely improved SJIA symptoms in 48% on canakinumab or tocilizumab and 32% on anakinra. Over 2 months, patients missed 2.9 school days due to SJIA (10% yearly loss). Caregivers lost 25 work days annually and 27.5 days of productivity (WPAI-SHP: mean absenteeism 10%; presenteeism 11%). Yearly SJIA travel/treatment costs averaged $1,130.

Conclusions: SJIA patients on biologic therapy experience HRQOL impairment, caregivers' mental well-being suffers and productivity losses and expenses are incurred. Therapeutic interventions that reduce the burden of SJIA are required.

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The Applicability of the "Revised Burden Measure" in Pediatric Settings: Measuring Parents' Caregiving Burdens and Uplifts

In pediatric settings, a valid and reliable assessment of negative and positive dimensions of caregiving can inform intervention processes and improve parent–child adaptation outcomes. While caregiving is a normative component of parenting, the experience can be quantitatively and/or qualitatively different for parents of children with a chronic health condition. The aim of this study was to systematically examine the psychometric properties of the "Revised Burden Measure" in a sample of parents of children with and without chronic health conditions. The "Revised Burden Measure" and self-reported measures of quality of life and mental health were administered to a sample of parents who had children with (n = 277) or without (n = 117) chronic health conditions. Classical test theory, item response theory, multi-group confirmatory factor analysis, and multivariate and univariate analyses of covariance were conducted to investigate the reliability and validity of the instrument. The "Revised Burden Measure" was shown to have good reliability, as well as criterion and known-groups validity. The data showed minor DIF by children's health status. Confirmatory factor analyses revealed a second-order model of caregiving burden (with Relationship, Objective and Subjective burdens loading on Overall Burden) and the construct validity of the complementary Uplifts subscale. Additionally, multi-group analyses ascertained the measurement and structural invariance of the model by children's health status. The results generally confirm the reliability and validity of the "Revised Burden Measure" and demonstrate its overall clinical and developmental applicability in pediatric settings. Highlights: The "Revised Burden Measure" is a valid and reliable measure for use in pediatric settings. This clinically informative instrument is easy to administer, score and interpret. The "Revised Burden Measure" enables a comprehensive assessment of negative and positive dimensions of caregiving. This measure may be used to assess the caregiving experience of parents who have children with or without chronic conditions. The instrument is recommended for the assessment of caregiver's burdens and uplifts across different life-span periods. 

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Economic burden, work, and school productivity in individuals with tuberous sclerosis and their families

Aims: Tuberous sclerosis complex (TSC) is a multi-organ autosomal-dominant, genetic disorder with incomplete penetrance. The multiple manifestations of TSC and impacts to numerous organ systems represent significant disease, healthcare, and treatment burden. The economic and employment burden of the disease on individuals and their families is poorly understood. This study assessed the cost of illness and work and school productivity burden associated with TSC in a cross-sectional web-survey sample.

Materials and Methods: Eligible TSC individuals and caregivers were invited through the Tuberous Sclerosis Alliance advocacy group to complete a web-based survey about illness characteristics, treatment, disease burden, direct and indirect healthcare costs, work and school impairment.

Results: Data from 609 TSC adults or caregiver respondents with no cognitive impairments were analyzed. TSC adults (>18 years of age) had significantly higher direct out-of-pocket costs for ER visits, expenses for medical tests and procedures, alternative treatments, medications and lifetime cost of surgeries compared to TSC pediatric individuals. Both TSC adults and TSC caregivers reported work and school absenteeism and presenteeism; however, adults reported significantly higher absenteeism and presenteeism and overall activity impairment due to TSC, as might be expected, compared to TSC caregivers. TSC adults had significantly higher absenteeism and presenteeism rates compared to adults with moderate-to-severe plaque psoriasis and muscular sclerosis.

Conclusions: TSC results in considerable direct out-of-pocket medical costs and impairment to work productivity, especially for adults. Future studies should include the comparator group and examine direct cost burden in the US using electronic medical records and insurance databases.

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Respite needs of families receiving palliative care

Aim: The care of a child with a life-limiting condition proves an emotional, physical and financial strain on the family that provides care for their child. Respite care is one way which allows carers to receive some relief and support in the context of this burden of care. The provision of and the requirements for respite in this context is poorly understood. This survey aims to describe the types of respite care families receive, the respite that they would ideally receive and the barriers that prevent this.

Methods: A cohort of 34 families cared for by the Paediatric Palliative Care Service in Queensland were approached to participate in a 20-question survey about their current respite preferences for future respite, with 20 surveys returned.

Results: Three of the families (15%) reported receiving no respite in the previous 12 months. Families who received respite received a combination of formal respite (a structured care provider) and informal respite (family or friends). Ten families (50%) reported that they would want the time of respite changed. Barriers to receiving adequate respite included complexity of care of the child, financial barriers and lack of a respite provider. 

Conclusions: There is disparate provision of respite care with the main perceived barrier to attaining 'ideal respite' being the lack of a provider able to meet the complex care needs of their child. The provision of respite across diversity in geography; medical condition; social and cultural needs remains a challenge. 

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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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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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Experiences of family members of children with cystic fibrosis under the light of Callista Roy

Objective: To know the experiences of family members of children with cystic fibrosis under the light of the theory of Callista Roy.

Method: Qualitative research that used the adaptation theoretical framework of Callista Roy for inductive content analysis. Fifteen family members, in a university hospital, between 23 and 63 years old, participated in the study, from September to October 2018.

Results: Two categories were elaborated: "Evaluation of stimuli" and" Evaluation of behaviors". The first has three subcategories: "focal", "contextual" and "residual". And the second, four subcategories: "physiological domain", "self-concept","role function" and "interdependence".

Final Considerations: During the evaluation of stimuli, work overload and stress were identified as focal stimuli. Regarding contextual stimuli, it was noticed that the social life of caregivers was prejudiced. As for residual stimuli, the fear of loss is constant, and it appears that the emotional aspect of family members is the most affected comparing with physical exhaustion.

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Family therapy for autism spectrum disorders

Background: Autism spectrum disorders (ASDs) are characterised by impairments in communication and reciprocal social interaction. These impairments can impact on relationships with family members, augment stress and frustration, and contribute to behaviours that can be described as challenging. Family members of individuals with ASD can experience high rates of carer stress and burden, and poor parental efficacy. While there is evidence to suggest that individuals with ASD and family members derive benefit from psychological interventions designed to reduce stress and mental health morbidity, and enhance coping, most studies to date have targeted the needs of either individuals with ASD, or family members. We wanted to examine whether family (systemic) therapy, aimed at enhancing communication, relationships or coping, is effective for individuals with ASD and their wider family network.

Objectives: To evaluate the clinical effectiveness and acceptability of family therapy as a treatment to enhance communication or coping for individuals with ASD and their family members. If possible, we will also seek to establish the economic costs associated with family therapy for this clinical population.; Search Methods: On 16 January 2017 we searched CENTRAL, MEDLINE, Embase, 10 other databases and three trials registers. We also handsearched reference lists of existing systematic reviews and contacted study authors in the field.; Selection Criteria: Randomised controlled trials (RCTs) and quasi-RCTs investigating the effectiveness of family therapy for young people or adults with ASD or family members, or both, delivered via any modality and for an unspecified duration, compared with either standard care, a wait-list control, or an active intervention such as an alternative type of psychological therapy.

Data Collection and Analysis: Two authors independently screened each title and abstract and all full-text reports retrieved. To enhance rigour, 25% of these were independently screened by a third author.; Main Results: The search yielded 4809 records. Of these, we retrieved 37 full-text reports for further scrutiny, which we subsequently excluded as they did not meet the review inclusion criteria, and identified one study awaiting classification.

Authors' Conclusions: Few studies have examined the effectiveness of family therapy for ASD, and none of these are RCTs. Further research studies employing methodologically robust trial designs are needed to establish whether family therapy interventions are clinically beneficial for enhancing communication, strengthening relationships, augmenting coping and reducing mental health morbidity for individuals with ASD and family members.

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Parents Need More Support: A Qualitative Study of the Experiences of Australian Parents Who Are Waiting for Surgical Intervention for Their Children With Otitis Media

Objective: To explore the experiences, expectations, and motivations of parents/caregivers of children with otitis media who were booked to undergo tympanostomy tube insertion.

Method: A cross-sectional cohort study was conducted using semistructured interviews with 39 parents. Interviews were conducted via telephone and analyzed for key themes.

Results: Three themes emerged that incorporated a range of subthemes: (1) the impact of the child's underlying condition on the family, (2) the cues and prompts that influenced parents to seek intervention, and (3) the parents' expectations of the health-care system. The child's otitis media disrupted the day-to-day functioning of the family and the child's well-being, but despite this, the families found ways to adapt and cope. Parents were influenced by their friends, family, and medical practitioners when making treatment decisions and had differing expectations of the health-care system.

Conclusion: Parents need support during their child's illness to help with pressures placed on the family and also in making health-care decisions for their child. Clinicians should consider these issues when discussing treatment options with parents. (© The Author(s) 2019.)

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Family Psychoeducation Program to Support Caregivers and Children/Adolescents with Mood and Anxiety Disorders

Anxiety and mood disorders represent two of the most common disorders experienced by children/adolescents. Untreated anxiety or mood disorders can put children and adolescents at risk for other conditions, like disruptive behavior and substance use disorders, that can have far-reaching consequences even after the mood or anxiety disorder is treated. For caregivers, providing care or raising a child or adolescent with a diagnosed mood or anxiety disorder can impact caregivers in various ways. The burden of care associated with providing care to a child or adolescent who carries a mood or anxiety disorder diagnosis includes fiscal responsibility, conflicts between family members, missed time at work, exhaustion, increased sadness, and limitations of personal freedom. The proposed program will integrate the ecological perspective, system theory, and the biopsychosocial framework to develop interventions that use cognitive-behavioral and family-systems based interventions to provide psychoeducation to caregivers and children or adolescents with a diagnosed mood or anxiety disorder. The proposed program offers practical strategies that use these multiple theories to provide a workbook that mental health professionals can use to engage, inform, and educate caregivers and children or adolescents with a diagnosed mood or anxiety disorder. The proposed program's likely outcomes include reducing anxiety and mood-related symptoms in children and adolescents, reduced caregiving burden, and increased service utilization to manage mood and anxiety symptoms in children and adolescents.

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Quality of life of the family of children with asthma is not related to asthma severity

The quality of life for the family is an important outcome of childhood asthma. The aim of the study was to describe the quality of life in families who have a child with asthma. The Pediatric Quality of Life Inventory Family Impact Module was completed by the parents of 527 children with asthma. The median overall score was 75.0 (interquartile range 63.9, 87.5). The following factors were independently associated with lower quality of life: additional difficulties such as anxiety and financial hardship (3.81 [2.45, 5.93]), waking with asthma symptoms one or more nights a week (odds ratio 2.53 [1.34, 4.75]), regular use of symptoms reliever medication (2.47 [1.57, 3.87]), and female gender (1.97 [1.27, 3.05]). Lower socioeconomic status of the family and exposure to molds at home doubled the odds for lower quality of life. Physician's diagnosed asthma severity and control were associated with quality of life in univariate, but not multivariate analysis.

Conclusion: Multiple factors, several of which are not related to asthma, contribute to the family burden of having a child with asthma. Clinicians should be mindful of the impact of asthma on the child and the family, and consider exploring factors not directly related to childhood asthma.

What is Known:

• Childhood asthma as a chronic disease impacts the quality of life of the patient, but there is also an impact on the immediate family.

• There are relatively few studies exploring the quality of life of parents of a child with asthma; the results are heterogeneous and none has been carried out in an Eastern European country.

What is New:

• This is the first study to describe caregiver's quality of life in an Eastern European population in the context of childhood asthma.

• The quality of life of the family of asthmatic child depends not only on factors related to asthma, but also non-asthma related factors such as poverty which play even more important role.

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A systematic review of instruments assessing dimensions of distress among caregivers of adult and pediatric cancer patients

Objective: Caregivers of cancer patients face intense demands throughout the course of the disease, survivorship, and bereavement. Caregiver burden, needs, satisfaction, quality of life, and other significant areas of caregiving are not monitored regularly in the clinic setting, resulting in a need to address the availability and clinical effectiveness of cancer caregiver distress tools. This review aimed to determine the availability of cancer caregiver instruments, the variation of instruments between different domains of distress, and that between adult and pediatric cancer patient populations.

Method: A literature search was conducted using various databases from 1937 to 2013. Original articles on instruments were extracted separately if not included in the original literature search. The instruments were divided into different areas of caregiver distress and into adult versus pediatric populations. Psychometric data were also evaluated.

Results: A total of 5,541 articles were reviewed, and 135 articles (2.4%) were accepted based on our inclusion criteria. Some 59 instruments were identified, which fell into the following categories: burden (n = 26, 44%); satisfaction with healthcare delivery (n = 5, 8.5%); needs (n = 14, 23.7%); quality of life (n = 9, 15.3%); and other issues (n = 5, 8.5%). The median number of items was 29 (4-125): 20/59 instruments (33.9%) had [LESS-THAN OR EQUAL TO]20 items; 13 (22%) had [LESS-THAN OR EQUAL TO]20 items and were psychometrically sound, with 12 of these 13 (92.3%) being self-report questionnaires. There were 44 instruments (74.6%) that measured caregiver distress for adult cancer patients and 15 (25.4%) for caregivers of pediatric patients.

Significance of results: There is a significant number of cancer caregiver instruments that are self-reported, concise, and psychometrically sound, which makes them attractive for further research into their clinical use, outcomes, and effectiveness.

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Factors associated with anxiety in family caregivers of children with chronic diseases

Background: Currently, information on factors associated with anxiety in family caregivers of children with chronic diseases is unavailable, indicating a significant gap in the literature. Therefore, this study aims to identify the psychosocial and sociodemographic variables associated with anxiety in family caregivers of children with chronic diseases.

Methods: In 2018, a nonprobability sample of 446 family caregivers was recruited at the National Institute of Health in Mexico City. The participants completed a sociodemographic variable questionnaire, clinical questions, and 18 psychosocial assessment scales, including a scale to assess family caregiver anxiety.

Results: Family caregiver anxiety was correlated with almost all psychosocial variables and one out of three clinical variables but with none of the sociodemographic variables. Furthermore, a multiple linear regression model with five psychosocial variables was established to predict family caregiver anxiety.

Conclusions: Some psychosocial variables have effects on caregiver anxiety that are relevant for interventions. Clinical interventions should be implemented based on the psychosocial variables associated with family caregiver anxiety. 

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Development and validation of the CAREGIVERS questionnaire: multi-assessing the impact of juvenile idiopathic arthritis on caregivers

Background: The primary caregiver is an important person in the life of patients with JIA. Their reactions depend on social, emotional and economic factors that affect the therapeutic alliance. Some generic instruments have been used to evaluate burden, anxiety, or quality of life of caregivers. This study aims to develop a specific instrument to measure the psychosocial and economic impacts on primary caregivers of patients with JIA.

Methodology: This is a mixed methods research, that includes qualitative and quantitative data, and was carried out in two phases. First phase: a pragmatic qualitative study (questionnaire construction) was conducted in two parts, a non-systematic literature review followed by interviews with primary caregivers. Second phase: a cross-sectional study (questionnaire validation) to complete validation and estimate Cronbach's alphas based on tetrachoric correlation coefficients, correlation matrix and Cohen's kappa coefficient test.;

Results: There were 38 articles found related to the experience of caregivers. 15 primary caregivers were interviewed (female 93%, median age 45 years). Thematic analysis identified 9 important topics from the perspective of participants (economic impact, coping, family roles, impact of diagnosis, mental health, couple/mate relationships, impact at work, religion, and knowledge of the disease). These topics were combined to create the interview questionnaire (56 items). Later, it was modified to 62 items that were divided into five dimensions: impact of the disease (psychosocial, economic, family, and relationships), knowledge of the disease, alternative medicine, future, and religion. The interview questionnaire was applied to 32 primary caregivers (female 93%, median age 37 years), results identify depression on 29 (90%), 18 (56%) feel sadness at diagnosis, 20 (63%) mentioned that JIA has influenced in their financial situation, 23 (72%) feel anxiety about the future, and 11 (37%) considered that their family relationships have changed. Statistical analysis identified inconsistencies during convergent and divergent validity of the construct. Consequently, 11 items were eliminated, 3 relocated, 6 modified, and 39 compacted obtaining the "Impact of Pediatric Rheumatic Diseases on Caregivers Multi-assessment Questionnaire" (CAREGIVERS questionnaire). This final version resulted on an eight-dimension (28 items) instrument.

Conclusions: The CAREGIVERS questionnaire captures perspectives of both the participants and clinicians. It will be helpful to measure the impact of the disease and thus, to improve the quality of care of children with JIA and their families.

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Long-Term Efficacy of the Workshop Vs. Online SUCCEAT (Supporting Carers of Children and Adolescents with Eating Disorders) Intervention for Parents: A Quasi-Randomised Feasibility Trial

Interventions for main carers of adult patients with anorexia nervosa (AN) can reduce the caregiving burden and increase caregiver skills. However, the effectiveness and feasibility for carers of adolescent patients, the optimal form of the intervention and long-term outcomes are largely unknown. We evaluated the efficacy and feasibility of the "Supporting Carers of Children and Adolescents with Eating Disorders in Austria" (SUCCEAT) workshop vs. online intervention. Main caregivers (parents) of adolescent patients with AN were randomly allocated to a workshop ( n = 50) or online version ( n = 50). Participants were compared to a non-randomised comparison group ( n = 49) receiving multi-family or systemic family therapy. Primary (General Health Questionnaire) and secondary outcomes were obtained at baseline, three-month and 12-month follow-up. Adherence was high for workshop and online participants (6.2 and 6.7 sessions completed out of 8). Intention-to-treat analyses revealed significant pre-post reductions in the primary outcome for the workshop (d = 0.87 (95%conficence interval (CI): 0.48; 1.26)) and online (d = 0.65 (95%CI: 0.31; 0.98)) intervention that were sustained at the 12-month follow-up. There was no significant group difference ( p = 0.473). Parental psychopathology and burden decreased and caregiver skills increased in all groups; the improvement of caregiver skills was significantly higher in SUCCEAT participants than in the comparison group. Online interventions for parents of adolescents with AN were equally effective as workshops. The improvements remained stable over time.

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Shifting Priorities for the Survival of My Child: Managing Expenses, Increasing Debt, and Tapping Into Available Resources to Maintain the Financial Stability of the Family

Background: Parents are confronted with a range of direct costs and intense caregiving demands following their child's cancer diagnosis, which may potentially threaten the financial stability of the family. Objective The aims of this study were to explore the financial impact of a new childhood cancer diagnosis on families and understand the strategies families use to manage these financial impacts.

Methods: As part of the mixed-methods Childhood Cancer Cost Study, a descriptive qualitative design was conducted. Parents discussed costs and their impact in a semistructured, audio-taped interview. A qualitative content analysis was used to analyze the transcribed data.

Results: Seventy-eight parents participated. Parents used several strategies to maintain financial stability. These strategies consisted of managing expenses, which entailed reducing living expenses and cutting unexpected cancer costs. Efforts to absorb these expenses required families to increase their debt while seeking ways to tap into available resources, including relying on their savings and leveraging their benefits and assets, increasing their paid work hours, relying on their support networks, and seeking help from philanthropy and government agencies for financial help.

Conclusion: Parents used several strategies to manage the increased out-of-pocket expenses and reduced household income.

Implications for Practice: Our findings of the financial impact of cancer costs on families provide insight into needed practice and policy changes aimed at lessening the economic impact of a childhood cancer diagnosis on the family and allow healthcare professionals and researchers to pursue more in-depth cost assessments in the future.

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Burden of caregivers of children with cerebral palsy: an intersectional analysis of gender, poverty, stigma, and public policy

Background: Caregivers of children with cerebral palsy suffer from a substantial psychosocial burden. However, there is a scarcity of documentation of the various sources of burden in low- and middle-income settings. 

Methods: We conducted qualitative in-depth interviews among mothers of children with cerebral palsy attending a physiotherapy facility. We purposively sampled mothers from rural and peri-urban areas in Tamil Nadu, India, till the point of data saturation. We analysed the transcripts using the socio-ecological model to identify the major dimensions of psychosocial burden among these mothers.

Results: At the individual level the mothers perceived aches and pains due to the heavy physical activity of caregiving. They also suffered from a feeling of guilt about the child's condition. Due to the difficulty in balancing family and work, they had significant financial burdens. They also perceived a lack of knowledge and awareness about possible options for the treatment of their child. At the interpersonal level, the mothers lacked support from their husband and family in the process of caregiving. They also had to suffer the ill effects of alcoholism and domestic violence from their husbands. They had to compromise on the care they provided to the other family members and their children without cerebral palsy. At the community level, the mothers had no support from the community members and felt isolated from others. The mothers also reported discrimination and lack of participation in social events. Environmental stressors like lack of inclusive public spaces, lack of options for public transport and unfriendly work timings and environment were major sources of burden. The mothers felt that the disability welfare support offered by the government was grossly insufficient and there was no platform for interactions with other peers and mothers suffering from a similar burden.

Conclusion: Caregivers of children with cerebral palsy have unique burdens in a typical low- and middle-income setting including an intersection of gender norms, poverty, stigmatization and non-inclusive public policy, which need to be addressed to improve the quality of life of caregivers.

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Quality of life and parental care burden in cochlear implanted children: A case-control study

Objectives: Cochlear implantation is a widely accepted and effective surgical method used to treat severe hearing loss. What's more, it affects the lives of both cochlear implanted children and their parents. This study aims to compare cochlear-implanted children (CIC) and their parents with healthy counterparts and their parents in terms of the quality of life (QOL) and parental care burden (CB).

Methods: This study was conducted between February and December 2018 in Turkey after receiving approval from the ethics committee. The Case Group included 34 children between 3 and 7 years of age, who received a CI due to bilateral prelingual sensorineural hearing loss and were using it for at least 1 year, and their parents. The Control Group consisted of 68 healthy children and their parents. The data were collected using disease and age-specific quality of life scales and burden interview. Normally distributed variables were analysed using parametric tests while non-normally distributed variables were analysed using nonparametric tests. The odds ratio (OR) and confidence interval (95%) were also calculated. Results were evaluated at significance level of p < 0.05.

Results: The mean age of the children and their parents in both Case and Control Groups was 63.9 months and 33.8 years, and 61.3 months and 36.6 years, respectively. There was a positive correlation between PPQ social relationship subscale and KINDL subscale scores in CIC (p < 0.05). The Case Group obtained lower mean scores from the subscales of KINDL and WHOQOL-BREF (p < 0.001, p < 0.01). The ZBI mean scores of the parents in Case and Control Groups were 43.18 and 27.54, respectively (p = 0.000).

Conclusion: It was determined that the QOL of the Case Group was lower than QOL of the Control Group, while the CB of the Case Group was higher than CB of the Control Group.

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Mitigating distress and promoting positive aspects of caring in caregivers of children and adolescents with schizophrenia: Mediation effects of resilience, hope, and social support

Assistance for distressed caregivers can indirectly facilitate recovery of the people being cared for, yet how resilience, hope, and social support mediate between caregiving burden and adjustment outcomes is unclear. A structural equation model was constructed based on data from a cross-sectional survey of 324 caregivers of children and adolescents with schizophrenia using multidimensional caregiver burden inventory, Connor-Davidson resilience scale, Herth hope index, perceived social support scale, distress management screening measure, and positive aspects of caregiving instruments. On distress, caregiving burden had a relatively large direct effect, and an indirect effect, mainly mediated by resilience. Resilience had a greater effect than social support or hope on distress. On positive aspects of caregiving (PAC), caregiving burden had only an indirect effect, primarily via the processes from social support and resilience to hope. Hope had a significant direct effect, while resilience and support had moderate indirect effects on PAC via hope. Resilience is an important mediator between caregiving burden and distress, with a greatest effect. Resilience, hope, and social support all mediated between caregiving burden and PAC, with hope having a greatest effect. Reducing the care burden may greatly help to relieve caregiver distress. Providing needed social support, encouraging caregivers to proactively utilize the support, and enhancing resilient coping skills will be helpful in developing resilience and mitigating distress. Health professionals should assess and ameliorate burden, be particularly aware of caregiver hopes, provide formal support, and encourage informal support to promote PAC. (© 2019 Australian College of Mental Health Nurses Inc.)

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Quality of life in paediatric tracheostomy patients and their caregivers - A cross-sectional study

Objectives: (1) To better outline quality of life outcomes in paediatric tracheostomy patients and their caregivers. (2) To establish whether quality of life outcomes for children are associated with those of their caregivers. (3) To establish whether quality of life outcomes were associated with the demographic and clinical variables of age, duration of time with a tracheostomy, number of comorbidities, and ventilator dependence.

Methods: Cross-sectional methodology was applied to gather quantitative data on quality of life outcomes, through PedsQL written questionnaires. These questionnaires covered social, emotional, physical and role/cognitive functioning. Caregivers also provided information on communication, worries, daily activities and family relationships. All children with a tracheostomy in situ, or recently decannulated, attending Sheffield Children's Hospital during the study period were eligible for inclusion.

Results: 25 families wished to participate, with patients ranging from 0.5 to 16.5 years (median 6.25). Both patients and caregivers attained lower scores than many other chronic diseases studied. Mean patient HRQoL was 56.2, with a physical health score of 52.4, psychosocial health score of 61.7. Caregiver HRQoL was 63.8, family functioning score was 68.1 and total family impact score was 61.6. Relative deficits were seen in caregiver social functioning (54.9), communication (56.3), worries (49.1) and daily activities (48.9), whilst role/cognitive functioning (73.8) and family relationships (79.6) subsections produced higher scores. Child psychosocial health showed moderate positive correlation (r = 0.492, p = 0.015) with both caregiver HRQoL and total family impact score. No correlation was identified between quality of life outcomes and demographic or clinical variables.

Conclusions: Disease burden appears to be particularly high for children and families with tracheostomies, especially when compared to other serious childhood disease. Lack of time and energy to complete daily activities, social isolation, worries, as well as difficulty communicating and perceived lack of understanding of their child's health were instrumental in reduced quality of life of caregivers. Anxiety about the future affected the majority of caregivers. This psychosocial impact may be lost in the busyness of delivery of medical care. We recommend provision of psychosocial support for these families as is now also recommended in other chronic childhood illness. 

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Caregivers' voices: The experiences of caregivers of children who sustained serious accidental and non-accidental head injury in early childhood

Head injury is a leading cause of mortality and acquired neurological impairment in children. Head-injured children may have neurobehavioural deficits that persist for years following injury. Head injury can result in significant and persistent caregiver burden, including mental health issues, family stress and disorganisation, and unmet social and healthcare service needs. Few studies have examined the healthcare and social service needs of children and their families following head injury sustained at an early age. This qualitative study aims to describe the experiences of caregivers of children who sustained a serious head injury (particularly non-accidental head injury) before the age of 2 years. Caregivers were interviewed up to 15 years following the initial injury. Semi-structured interviews with 21 caregivers of 15 children (aged 3-15 years at the time of interview) were completed. Thematic analysis of interview data generated three key themes: impact, support and information. The study's findings reveal the broad impact of serious childhood head injury on caregivers, specifically the significant distress and burden brought about through lack of information, challenges in accessing support and inconsistent care. Recommendations for developing a quality 'model of care' and improving ease of access to supports for caregivers are provided. (© The Author(s) 2015.)

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Caregiver burden in pediatric dialysis

In spite of improvements in expected survival, neurodevelopmental outcome, and quality of life, decision-making in neonatal dialysis remains controversial in high-resource countries. In part, this may be based upon the significant burdens experienced by the child, and also those experienced by the parents as caregivers. Emerging research offers a clearer description of the burdens experienced by dialysis caregivers worldwide. Caregiver burden represents an important area for nephrologists to advocate for patients and their families; however, nephrologists must also recognize the realities caregivers currently experience. Incorporation of caregiver burden into medical decision-making for children with end-stage kidney disease is necessary, but raises several ethical concerns.

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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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Quality of life and burden in caregivers of youth with obsessive-compulsive disorder presenting for intensive treatment

Background: Pediatric obsessive-compulsive disorder (OCD) is associated with deleterious familial effects; caregivers are often enmeshed in the disorder and can experience considerable burden and decreased quality of life (QoL). Consequently, this study examined burden and QoL in caregivers of youth with OCD enrolled in an intensive outpatient or partial hospitalization program.

Method: The relationships between caregiver QoL and burden and the following variables were investigated: OCD symptom severity, functioning (youth functional impairment, general family functioning), family (family accommodation, parental relationship satisfaction, positive aspects of caregiving), and comorbid psychopathology (caregiver anxiety and depressive symptoms, youth internalizing and externalizing behaviors). Seventy-two child and caregiver dyads completed clinician- and self-rated questionnaires.

Results: Components of caregiver QoL correlated with caregiver-rated functional impairment, family accommodation, youth externalizing behaviors, and caregiver psychopathology. Aspects of caregiver burden correlated with child OCD symptom severity, functional impairment related to OCD, as well as caregiver and child comorbid psychopathology. Caregiver depressive symptoms predicted caregiver QoL, and caregiver depressive symptoms and child externalizing symptoms both predicted caregiver burden. Caregiver burden did not mediate the relationship between obsessive-compulsive symptom severity and caregiver QoL.

Conclusion: Ultimately, elucidating factors associated with increased caregiver burden and poorer QoL is pertinent for identifying at-risk families and developing targeted interventions.

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Investigation of the relationship between disease severity, caregiver burden and emotional expression in caregivers of children with cerebral palsy

Purpose: The aim of this study was to investigate the relation between the physical problems of children with CP and caregiving burden and the emotional expression characteristics of caregivers.

Methods: The study included 144 caregivers of child with cerebral palsy and Zarit Burden Interview (ZBI) and Expressed Emotion Scale (EES) will be applied to the caregivers who will participate in the study. Disease severity of children with cerebral palsy will be evaluated by the Gross Motor Function Classification System (GMFCS) and Manual Ability Classification System (MACS) in children with cerebral palsy. Communication Function Classification System (CFCS) will be used to examine the communication of children with their families.;

Results: Accordingly, a positive, statistically significant, moderate correlation was found between the GMFCS, MACS, and CFCS scores and ZBI scores in patients with cerebral palsy (r ~ 0.50; p < 0.01). In this study, a positive, statistically significant but weak correlation was found between GMFCS, MACS, and CFCS scores and EES scores in patients with cerebral palsy (r ~ 0.30; p < 0.01). A statistically significant, moderate correlation was found between ZBI and EES (r ~ 0.50; p < 0.01).

Conclusion: According to the results of our study, as motor skills and communication skills decrease, especially the burden of caregivers increases and the family's emotional expression processes are related to these variables. We think that in the long-term follow-up of children with CP, it may be useful to provide appropriate psychiatric support by evaluating caregivers appropriately.

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Caring for a Child with Phenylketonuria: Parental Experiences from a Eurasian Country

Objectives: Phenylketonuria (PKU) and mild hyperphenylalaninemia (HPA) are characterized by increased blood phenylalanine concentrations varying from mild to severe. Management of PKU was reported to be time consuming and burdensome for caregivers. This study intended to explore the experiences of families caring for a child with PKU/HPA in a country with a high PKU rate. The aim of this study was to compare parental well-being between parents of children with and without dietary restrictions and to explore the factors associated with parental psychological well-being.

Methods: Participants were interviewed about their experiences, concerns, and challenges related to the disease by using a semistructured questionnaire. After the interview, parents filled out the Beck Depression Inventory and State-Trait Anxiety Inventory-Trait.

Results: This study highlighted the adverse psychological, financial, and social effects of the diagnosis and management of the disease regarding the lives of the families of children with PKU/HPA. Although parental anxiety scores of children with and without dietary restrictions were similar, depressive symptom scores were higher in parents of children with dietary restrictions. However, in multiple regression analysis, lower household income and absence of perceived social support were found to be independent factors associated with higher depressive symptom scores. Having a daughter diagnosed with PKU/HPA and lower household income were found to be factors associated with higher anxiety scores.

Conclusion: This study revealed that income level, perceived social support, and gender of the child were factors associated with psychological well-being of parents caring for children with PKU/HPA. Health care professionals should identify the challenges faced by families and should be aware of risk factors associated with lower parental well-being to achieve better family adjustment and better health outcomes.

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Family Burden of Raising a Child with ADHD

The purpose of the study was to estimate the burden to families of raising a child with attention-deficit/hyperactivity disorder (ADHD). Data were drawn from a longitudinal sample recruited in western Pennsylvania. When participants were between 14 and 17 years old, parents completed a questionnaire assessing economic burden over the course of raising their children. Domains of economic burden to families included direct costs related to child's behaviors (excluding treatment expenses) and indirect costs related to caregiver strain. On average, participants with ADHD incurred a total economic burden over the course of child development that was more than five times greater compared to youths without ADHD (ADHD = $15,036 per child, Control = $2,848 per child), and this difference remained significant after controlling for intellectual functioning, oppositional defiant symptoms, or conduct problems. Parents of participants with ADHD were more likely to have changed their job responsibilities or been fired and reported lower work efficiency. The current evaluation of economic burden to individual families extends previous estimates of annual societal cost of illness (COI) of ADHD. Our rough annual estimate of COI for ADHD in children and adolescents is $124.5 billion (2017 US Dollars). Findings underscore the need for interventions to reduce the costly dysfunctional outcomes in families of children with ADHD. 

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Childhood disability in Turkana, Kenya: Understanding how carers cope in a complex humanitarian setting

Background: Although the consequences of disability are magnified in humanitarian contexts, research into the difficulties of caring for children with a disability in such settings has received limited attention.

Methods: Based on in-depth interviews with 31 families, key informants and focus group discussions in Turkana, Kenya, this article explores the lives of families caring for children with a range of impairments (hearing, vision, physical and intellectual) in a complex humanitarian context characterised by drought, flooding, armed conflict, poverty and historical marginalisation.

Results: The challenging environmental and social conditions of Turkana magnified not only the impact of impairment on children, but also the burden of caregiving. The remoteness of Turkana, along with the paucity and fragmentation of health, rehabilitation and social services, posed major challenges and created opportunity costs for families. Disability-related stigma isolated mothers of children with disabilities, especially, increasing their burden of care and further limiting their access to services and humanitarian programmes. In a context where social systems are already stressed, the combination of these factors compounded the vulnerabilities faced by children with disabilities and their families.

Conclusion: The needs of children with disabilities and their carers in Turkana are not being met by either community social support systems or humanitarian aid programmes. There is an urgent need to mainstream disability into Turkana services and programmes.

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Impact of Childhood Psoriasis on Caregivers' Quality of Life, Measured with Family Dermatology Life Quality Index

Psoriasis is a chronic skin disease, that often develops below the age of 18. In an integrated approach to childhood psoriasis, the impact of psoriasis on family members merits consideration. In this study, the impact of childhood psoriasis on caregivers (61 mothers and 4 fathers) of 65 children (age range 5-17.5 years) was measured using Family Dermatology Life Quality Index (FDLQI). Childhood psoriasis exerted a substantial impact on the QoL of caregivers (mean FDLQI 13.62 +/- 6.15 points). Caregivers rated routine household expenditure, time spent caring for the skin of the child, and emotional distress as the areas most impacted by psoriasis. The areas least affected were parent-child relationships, and caregivers' social lives. The impact of other people's reactions to the child's disease was rated as more severe by caregivers of girls compared with those of boys (p = 0.004).

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Impact of severe polyhandicap cared for at home on French informal caregivers' burden: a cross-sectional study

Objectives Polyhandicap (PLH), defined by a combination of profound intellectual impairment and serious motor deficits, is a severe condition with complex disabilities. In France, care of the large majority of PLH individuals is managed in specialised rehabilitation centres or residential facilities, but some of PLH individuals are cared for at home. The aims of this study were to assess the self-perceived burden among informal caregivers of PLH individuals and to identify potential determinants of this burden. Design Cross-sectional study (Neuropaediatric Department, Trousseau Hospital, Paris, France). Settings PLH children were recruited from a specialised paediatric/neurological department. Participants The selection criteria of caregivers were age above 18 years and being the PLH individual's next of kin. Outcomes measures From March 2015 to December 2016, data were collected from the caregivers, including sociodemographical data, health status, psycho-behavioural data (quality of life, mood disorders and coping) and self-perceived burden. In addition, the health status of the PLH individual was collected. Relationships between the burden scores and potential determinants were tested (correlations coefficients, Mann-Whitney tests, generalised estimating equations models). Results Eighty-four children were eligible; 77 families returned their questionnaire. The informal caregivers of PLH children experienced a high level of perceived burden (scores ranged from 55 +/- 20 to 81 +/- 12). Eighty per cent of them had more than 5 hours of daily caregiving and 51% of them had to get up more than twice during the night. The main factors associated with caregiver burden were age, financial issues, health status, daily care and coping strategies. The patients' health status was not associated with caregiver burden. Conclusions Some of the caregiver burden determinants might be modifiable. These findings should help healthcare workers and health-decision makers implement specific and appropriate interventions.

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Quality improvement study on early recognition and intervention of caregiver burden in a tertiary hospital

BACKGROUND: Caregivers play a crucial role in taking over the important task of looking after patients post-hospitalisation. Caregivers who are unfamiliar with patients' post-discharge care often experience caregiver stress, while patients may see deterioration in their condition. As caregivers are our core partners in healthcare, it is therefore necessary for patient navigators to recognise, assess and address caregivers' needs or burden as early as on admission to hospital. Patient navigators are trained registered nurses whose main role is to provide patients and caregivers with personalised guidance through the complex healthcare system. OBJECTIVES: This quality improvement study examined the efficacy of using the Zarit Burden Interview as a tool in helping patient navigators recognise caregiver burden early and the effectiveness of targeted interventions on caregiver burden. METHODS: Various quality improvement tools were used. Eighty-six patient-caregiver dyads who met the inclusion criteria were enrolled. Informal caregivers were assessed for caregiver burden using the Zarit Burden Interview during hospital admission (T0) and again at 30 days postdischarge (T1), post-intervention. RESULTS: There was significant improvement in the Zarit Burden mean scores from T0 to T1 reported for the 80 dyads who completed the study, even after adjusting for covariates (T0 mean=11.08, SD=7.64; T1 mean=2.48, SD=3.36, positive ranks, p<0.001). Highest burden identified by most caregivers were the personal strain; trying to meet other responsibilities and uncertain about what to do in caring for their loved one. By recognising the different aspects of caregiver burden early, patient navigators were able to focus their interventions. CONCLUSION: Early recognition of caregiver burden and targeted interventions were found to be effective at reducing caregiver burden in a tertiary hospital.

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Caregiving burden among informal caregivers of African American cancer survivors

Purpose Relatively little is known about caregivers of African American cancer survivors. Our goal was to identify the extent of burden among this group of caregivers. Methods Responses from 560 informal caregivers of African American participants of the Research on Cancer Survivors (ROCS) study in Detroit, MI, were analyzed including demographics, assistance provided including activities of daily living (ADLs) and instrumental activities of daily living (IADLs), time spent in caregiving, and caregiver burden (CGB). We assessed relationships between CGB and demographic variables, ADLs/IADLs, and level of care. Multivariable logistic regression determined which ADLs and IADLs were associated with high CGB. Results Over 75% of caregivers were female and 97% identified as African American. Mean age was 52.6 years. Fifty-six percent were employed outside the home, and 90% were related to the survivor. Caregivers averaged 35.7 h/week providing care, assisting with on average 2.8 ADLs and 5.0 IADLs. Despite the many hours and activities reported, no caregivers rated CGB as severe; only 4% rated it moderate to severe. ADLs associated with the top quartile of CGB were feeding and toileting; IADLs were finances, telephoning, housework, and medications. Conclusions Caregivers for African American cancer survivors provide many hours of care, yet most describe their CGB as low. Although ADL assistance is often available through the healthcare system, assistance with IADLs presents an opportunity to lessen the burden for these caregivers and their care recipients. Implications for Cancer Survivors African American cancer survivors receive much care from informal family caregivers, who assist with multiple ADLs and IADLs. Formal IADL assistance programs, similar to those available for ADLs, would benefit both survivors and caregivers.

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Journal of Advanced Nursing

Aim To assess the effects of family nursing conversations on family caregiver burden, patients' quality of life, family functioning and the amount of professional home health care. Design A controlled before-and-after design. Methods Intervention group families participated in two family nursing conversations incorporated in home health care; control group families received usual home health care. Patients and family members completed a set of questionnaires on entering the study and 6 months later to assess family caregiver burden, family functioning and patients' quality of life. The amount of home health care was extracted from patient files. Data were collected between January 2018-June 2019. Results Data of 51 patients (mean age 80; 47% male) and 61 family members (mean age 67; 38% male) were included in the results. Family caregiver burden remained stable in the intervention group whereas it increased in the control group. Family functioning improved significantly compared with the control group for patients and family members in the intervention group. No significant effects on patients' quality of life emerged. The amount of professional home health care decreased significantly in the intervention group whereas it remained equal in the control group. Conclusion Family nursing conversations prevented family caregiver burden, improved family functioning, but did not affect patients' quality of life. In addition, the amount of home health care decreased following the family nursing conversations. Impact Countries with ageing populations seek to reduce professional and residential care and therefore encourage family caregiving. Intensive family caregiving, however, places families at risk for caregiver burden which may lead to increased professional care and admission into residential care. This study demonstrates that family nursing conversations help nurses to prevent family caregiver burden and improve family functioning while decreasing the amount of home health care.

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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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Patient and caregiver characteristics associated with caregiver burden in Parkinson’s disease: a palliative care approach

Background: Parkinson’s disease (PD) is a neurodegenerative disorder associated with caregiver burden. Higher rates of burden are associated with adverse outcomes for caregivers and patients. Our aim was to understand patient and caregiver predictors of caregiver burden in PD from a palliative care approach. Methods: We conducted a cross-sectional analysis of baseline data from PD patients and caregivers in a randomized trial of outpatient palliative care at three study sites: University of Colorado, University of Alberta, and University of California San Francisco. The primary outcome measure of caregiver burden, the Zarit Burden Interview (ZBI), was compared against the following patient and caregiver variables: site of care, age, disease/caretaking duration, presence of atypical parkinsonism, race, income, education level, deep brain stimulation status, the Unified Parkinson’s Disease Rating Scale (UPDRS) and Edmonton Symptom Assessment System Revised: Parkinson Disease (ESAS) for symptom severity and burden, the Montreal Cognitive Assessment (MoCA) for cognitive function, Quality of Life in Alzheimer’s Disease (QOL-AD) scale for patient and caregiver perspectives on patient general quality of life, Parkinson’s Disease Questionnaire 39 (PDQ-39) scale for health-related quality of life, Hospital Anxiety and Depression Scale (HADS) for patient and caregiver mood, Prolonged Grief Questionnaire, Functional Assessment of Chronic Illness Therapy- Spiritual Well-Being (FACIT-SP) of patient and caregiver, and Palliative Performance Scale for functional status. A stepwise multivariate linear regression model was used to determine associations with ZBI. Results: A total of 175 patients (70.9% male; average age 70.7±8.1 years; average disease duration 117.2±82.6 months), and 175 caregivers (73.1% female; average age 66.1±11.1 years) were included. Patient spiritual well-being (FACIT-SP Faith subscale, r 2 =0.024, P=0.0380), patient health-related quality of life (PDQ-39, r 2 =0.161, P 2 =0.062, P=0.0014), caregiver anxiety (HADS Anxiety, r 2 =0.077, P=0.0002), and caregiver perspective on patient quality of life (QOL-AD Caregiver Perspective, r 2 =0.088, P Conclusions: Patient and caregiver factors contribute to caregiver burden in persons living with PD. These results suggest targets for future interventions to improve caregiver support.

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A validation of the Croatian version of Zarit Burden Interview and clinical predictors of caregiver burden in informal caregivers of patients with dementia: a cross-sectional study

Aim: To validate the Croatian version of the Zarit Burden Interview (ZBI) and to investigate the predictors of perceived burden.; Methods: This cross-sectional study involved 131 dyads of one informal caregiver family member and one patient with dementia visiting primary care practices (Health Care Center Zagreb-West; 10/2017-9/2018). Patient-related data were collected with the Mini-Mental-State-Examination, Barthel-index, and Neuropsychiatric-Inventory-Questionnaire (NPI-Q); caregiver-related data with the ZBI, and general information on caregivers and patients with a structured questionnaire. Principal-axis-factoring with varimax-rotation was used for factor analysis.; Results: The caregivers' mean age was 62.1±13 years. They were mostly women (67.9%) and patients' children (51.1%). Four dimensions of ZBI corresponding to personal strain, frustration, embarrassment, and guilt were assessed and explained 56% variance of burden. Internal consistency of ZBI (α=0.87) and its dimensions (α1=0.88, α2=0.83, α3=0.72, α4=0.75) was good. Stronger cognitive and functional impairment of patients was associated only with personal strain, whereas more pronounced neuropsychiatric symptoms and the need for daily care were associated with more dimensions. Longer caregiver education suppressed embarrassment and promoted guilt. Guilt was higher in younger caregivers, caregivers of female patients, patients' children, and non-retired caregivers. In multivariate analysis significant predictors of higher overall burden were male sex of the patient, higher NPI-Q, the need for daily-care services, shorter duration of caregiving, non-spouse relationship, higher number of hours caring per-week, and anxious-depressive symptoms in a caregiver.; Conclusion: The Croatian version of ZBI is reliable and valid. Our data confirm that ZBI is a multidimensional construct. Caregivers may benefit from individually tailored interventions.

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Types of stroke-related deficits and their impact on family caregiver's depressive symptoms, burden, and quality of life

Background: Stroke caregiving has been associated with higher rates of caregiver burden, depression, and lower quality of life compared to non-caregivers. Little is known about relationships between stroke survivors' Cognitive/Emotional and Motor/Functional deficits and caregivers' outcomes.; Objective: To determine the relationship between stroke survivors' Cognitive/Emotional deficits and Motor/Functional deficits and caregivers' depression, burden, and quality of life.; Method: This is a retrospective secondary data analysis. The sample consisted of 109 caregivers of stroke survivors. Step-wise linear multiple regression analyses were conducted to determine if Cognitive/Emotional deficits and/or Motor/Functional deficits, were predictive of caregivers' depressive symptoms, burden, physical quality of life, and mental quality of life.; Results: The Cognitive/Emotional deficits category was a better predictor than the Motor/Functional deficit of caregivers' depressive symptoms, burden, and mental quality of life. The Cognitive/Emotional deficit score positively predicted both depression (β = .49, p < .001) and burden (β = 0.39, p < .001) and negatively predicted mental quality of life (β = -0.42, p < .001), though it did not significantly predict physical quality of life (β = -0.01, p = .90). The motor/functional deficits failed to significantly predict any of the caregiver outcomes (all p-values >.05).; Conclusions: The Cognitive/Emotional deficits appear to impact caregiver well-being more than the Motor/Functional deficits. Understanding the impact of Cognitive/Emotional and Motor/Functional deficits on caregivers can help clinicians identify caregivers at the highest risk for negative outcomes. 

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A study of disability profile and burden in caregivers of stable schizophrenia patients

Introduction: Schizophrenia is one of the most devastating disorders, leading to long-term and progressive disability in numerous individuals. Disability reflects an interaction between features of a person's body and of the society. In all treatments, family psycho-education is also very important as disability of schizophrenia leads to burden upon family members. Caregiver burden can be either objective or subjective. Objective burdens are behavioural phenomena: disruption of the social activities and financial difficulties. Subjective burdens comprise emotional strain on caregivers. Due to the chronic nature of the disease and the disability, patients with schizophrenia as a group need most care in social and economic areas. Aim of the study: To assess the level of burden in caregivers of stable schizophrenia patients and their relation with degree of disability in schizophrenia patients. It was a cross-sectional and observation study. Material and methods: The study was carried out with 154 stable patients of International Classification of Diseases diagnosed schizophrenia and their primary caregivers. The patients were evaluated on the Indian Disability Evaluation and Assessment Scale (IDEAS) and Positive and Negative Syndrome Scale (PANSS), and the Burden Assessment Schedule (BAS) was used for their primary caregiver. Results: Two thirds of schizophrenia patients who were stable on medication for at least 6 months and diagnosed with schizophrenia for at least 2 years had mild (70.12%) and the rest had moderate disability (29.87%). Greater burden of care was experienced with increasing age. Conclusions: Caregivers' burden has a direct correlation with overall disability. Deficiency in interaction, communication and employment leads to more burden of care, but not a deficiency in self-care.

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Stigma and burden of mental illness and their correlates among family caregivers of mentally ill patients

Background and objectives Family caregivers play a curial role in supporting and caring for their mentally ill relatives. Their struggle for facing stigma and shouldering caregiving burden is marginalized, undervalued, and invisible to medical services. This study assessed the stigma and burden of mental illnesses, and their correlates among family caregivers of mentally ill patients. Methods A cross-sectional study design was used to collect data from 425 main family caregivers of mentally ill patients at Assiut University Hospital. A structured interview questionnaire was designed to collect socio-demographic data of both patients and their caregivers. Stigma scale for caregivers of people with mental illness (CPMI) was used to assess the affiliate stigma, while the associative stigma was assessed by the explanatory model interview catalogue stigma scale (EMIC-Stigma scale). The caregivers' burden was assessed using Zarit burden Interview, and Modified Attitude toward Mental Illness Questionnaire was used to assess caregivers' knowledge and attitude towards mental illness. Results Bipolar disorder (48%) and schizophrenia/other related psychotic disorders (42.8%) were the most common mental illnesses among the study patients. The mean scores of CPMI total scale, EMIC-Stigma scale, and Zarit Burden scale were 56.80 +/- 7.99, 13.81 +/- 5.42, and 55.20 +/- 9.82, respectively. The significant correlates for affiliate stigma were being parents of patients (ss = 4.529, p < 0.001), having higher associate stigma (ss = 0.793, p < 0.001), and aggressive behavior of mentally ill patients (ss = 1.343, p = 0.038). The significant correlates for associate stigma of the study caregivers were being caregivers' relatives other than parents (ss = 1.815, p = 0.006), having high affiliate stigma (ss = 0.431, p < 0.001), having poor knowledge and negative attitude towards mental illness (ss = - 0.158, p = 0.002), and aggressive behavior of mentally ill relatives (ss = 1.332, p = 0.005). The correlates for the high burden were being male (ss = 3.638, p = 0.006), non-educated caregiver (ss = 1.864, p = 0.045), having high affiliate stigma (ss = 0.467, p < 0.001), having high associative stigma (ss = 0.409, p < 0.001), having poor knowledge and negative attitude toward mental illness (ss = - 0.221, p = 0.021), seeking traditional healers and non-psychiatrist's care from the start (ss = 2.378, p = 0.018), and caring after young mentally ill relatives (ss = - 0.136, p = 0.003). Conclusion The studied caregivers suffered from stigma and a high level of burden. Psycho-educational programs directed toward family caregivers are highly recommended.

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Severity of illness and distress in caregivers of patients with schizophrenia: Do internalized stigma and caregiving burden mediate the relationship?

Aims To test a multiple mediation model of internalized stigma and caregiving burden in the relationship between severity of illness and distress among family caregivers of persons living with schizophrenia. Design This is a cross-sectional study. Methods Data were collected from a consecutive sample of 344 Chinese family caregivers of persons living with schizophrenia between April-August 2018. Instruments used in this research included the Clinical Global Impression-Severity of Illness, the Internalized Stigma of Mental Illness Scale, the Caregiver Burden Inventory, and the Distress Thermometer. Data analysis was conducted using descriptive statistics, the Spearman correlation, and regression analysis to estimate direct and indirect effects using bootstrap analysis. Results This research found that internalized stigma and caregiving burden can separately and sequentially mediate the relationship between severity of illness and distress. Moreover the mediation of internalized stigma plays the largest role among the multiple mediations. Conclusion The severity of illness, internalized stigma, and caregiving burden are significant factors of distress among family caregivers of persons living with schizophrenia. The future intervention studies which be designed aiming at the three factors may be beneficial for family caregivers of persons living with schizophrenia. Impact This research examined the psychosocial development of distress and indicated that interventions improving patients' symptoms and decreasing internalized stigma and caregiving burden can help to prevent or reduce distress among family caregivers.

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The relationship between the burden on caregivers in caring for older people and their quality of life

Older people have decreased functions, which lead to increased dependence on others, especially their families. This dependence can impose a burden on the caregivers who help with the daily needs of older people, and any resulting inability to provide care has an impact on their quality of life. This study aims to identify relationship between the burden on caregivers in caring for older people and their quality of life. The research method is a cross-sectional design based on 135 respondents; the inclusion criteria for the study are families and the older people who live in the same house. The results of the statistical tests, there is a relationship between the burden on caregivers in caring for older people and the quality of life of the latter (p<0.05). The analysis also obtained the result OR=2.382 (95% CI=1.193; 4.757). Based on the results of the study, various efforts are needed to reduce the burden on caregivers, in order to increase their ability to care for older people and improve the quality of those in need. 

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The Relationship Between Spiritual Well-Being and Care Burden in Unofficial Caregivers of Elderly Patients With Dementia

Objectives Dementia is a common disease in the elderly and imposes a heavy care burden on family members. Many factors can be associated with care burden. One of these factors can be the caregivers' Spiritual Well-Being (SWB). This study aimed to examine the relationship between SWB and care burden in caregivers of dementia patients. Methods This correlational study was conducted on 60 caregivers (75% female and 25% male with a mean age of 47 years) of patients with dementia referred to Rasoul-e-Akram Hospital and Brain & Cognitive Clinics in Tehran, Iran in 2019. Samples were selected using purposive and convenience sampling methods. The caregivers were evaluated by using the Caregiver Burden Questionnaire and SWB Scale and a socio-demographic checklist. Data were analyzed by using Pearson's correlation coefficient and multiple linear regression analysis in SPSS software at the significance level of P<0.05. Results About 16.7% of caregivers had little care burden, 35% had moderate to severe burden, 25% moderate burden and 23.3% severe burden. Moreover, 1.7% had poor SWB, 66.7% moderate SWB and 31.7% high SWB. The care burden had a negative and non-significant relationship with religious dimension of SWB (r=-0.089, P=0.505), and a negative and significant relationship with existential dimension of SWB (r=-0.283, P=0.032). Linear regression model revealed that existential dimension had a relationship with care burden (beta=-0.298, P=0.023) and explained 9% of variation in care burden. Conclusion SWB plays an important role in improving the overall health of caregivers. in addition to being one of determinant of care burden, it acts as a factor in enhancing other aspects of health. Overall, caregiving is a stressful job; being aware of positive topics such as spirituality helps therapists provide strategies for caregivers to reduce their stress and care burden.

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Psychoeducational intervention on burden and emotional well-being addressed to informal caregivers of people with dementia

Background In dementia it is necessary that a family member become an informal caregiver. This labour has social, physical and emotional repercussions on the caregiver's health. The objective was to assesses the impact of the INFOSA-DEM intervention on burden and emotional well-being among caregivers of people with dementia, evaluating the effects at 3 and 6 months. Method We adopted an experimental, non-randomised design with an intervention group and a control group. The intervention group received the intervention and the control group received usual care. The study was carried out in the catchment areas of three centres specialising in the care of people with cognitive impairment in the province of Barcelona. Results At 3 months, there was an improvement with respect to burden in the intervention group with a significant worsening (P< 0.012) in the control group. Similarly, a positive effect on emotional well-being was observed in the intervention group compared with a small negative effect among controls. Conclusions Programs addressed to informal caregivers based on psychoeducational and cognitive-behavioural therapies are effective in improving quality of life and emotional well-being, and in reducing burden, with a positive effect on the quality of care provided at home.

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Pathological narcissism: A study of burden on partners and family

Pathological narcissism is characterized by impaired interpersonal functioning, but few studies have examined the impact of the disorder on those living in a close relationship. Participants (N = 683; comprising romantic partners [77.8%], mothers [8.5%] or other family members [10%]) in a close relationship with a relative with pathological narcissism completed measures assessing levels of grief, burden, mental health, and coping style. Participants' reported burden was over 1.5 standard deviations above comparison carers of people with mood, neurotic, or psychotic disorders, and higher than carers of people with borderline personality disorder. Similarly, caseness for depression (69% of sample) or anxiety disorders (82%) in the sample was high. Relationship type, subtype expression (vulnerable/grandiose), and coping style were all found to significantly relate to experienced psychopathology. Although limitations exist regarding sample selection that may influence interpretation of results, these findings quantify the significant interpersonal impact of pathological narcissism in this sample.

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Loneliness and Burden Perceived by Family Caregivers of Patients With Alzheimer Disease

Background: The present study aimed at investigating loneliness and burden experienced by family members caring for relatives diagnosed with Alzheimer disease. Methods: Participants were 40 caregivers of inpatients with Alzheimer disease. Correlation and multiple regression analyses were conducted to investigate whether caregivers' loneliness (uni- and multidimensional) and burden are associated with and predicted by (1) specific caregiver characteristics and/or (2) patients' dementia severity and neuropsychiatric symptoms. Results: Loneliness was significantly correlated with caregivers' sex, age, and living circumstances, while burden was significantly correlated with caregivers' education solely. Regression analyses revealed that caregivers' sex and living circumstances contributed significantly to variance explanation of loneliness (but not burden), while the additional consideration of patient variables did not improve model fit. Conclusions: Loneliness reported by caregivers of relatives diagnosed with dementia is significantly modulated by caregiver (but not patient) characteristics. Notably, both uni- and multidimensional loneliness scales seem to be sensitive diagnostic tools.

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Latina/o and non-latina/o brain injury and dementia patients' and caregivers' health: An actor/partner interdependence model

Background: The interdependence between patient and caregivers' health, which is when the patients' and informal caregivers' emotion, cognition and/or behavior affects that of the other person is well documented among dyads experiencing cancer and heart disease, but scant research has assessed interdependence among those with brain injuries or dementia and Latina/o populations. This study aimed to assess the interdependence of patient and caregiver depression, patient functional independence and caregiver burden among non-Latina/o and Latina/o and patients with brain injuries and dementia and their caregivers. Methods: Patients and caregiver dyads (n = 96) were recruited from a trauma hospital. Participants completed measures on patient and caregiver depression, patient functional independence and caregiver burden. Participants provided written informed consent. Patient inclusion criteria included: (1) diagnosis with a brain injury or dementia, (2) minimum age of 12, (3) community dwelling and (4) ability to verbally communicate and complete study measures. Caregivers were only included if they were informal, unpaid, family or a friend. Nonparametric Spearman's Rho correlations were conducted to test the study hypotheses. Discussion: There was consistently a statistically significant positive relationship between caregiver depression and caregiver burden for all groups. For non-Latina/o patient and caregiver dementia dyads, there were associations between patient depression and caregiver depression. For non-Latina/o dementia dyads, functional ability was only associated with patient depression. For Latina/o patient and caregiver brain injury and dementia dyads, the only statistically significant relationship was between caregiver depression and caregiver burden. Health services should embrace family-focused mental health and respite interventions.

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Is informal caregiving at odds with optimal health behaviour? A cross-sectional analysis in the caregiving partners of persons with spinal cord injury

Background: The intricate relationship between caregiving and health may to some extent be determined by the burden and restrictions imposed on informal caregivers, and the impact these experiences have on health behaviours. It is assumed that a positive caregiver experience leads to health promoting behaviours in caregivers, whereas a negative experience induces the opposite. The objective of this study is to test these assumptions and to investigate the association between the caregiver experience and health behaviours in the caregiving partners of persons with severe physical impairment, due to spinal cord injury. Methods: Cross-sectional survey data from 133 couples of caregiving partners and persons with spinal cord injury living in Switzerland was used. We employed multivariable regression to evaluate the associations of the caregiver experience (objective and subjective caregiver burden, and satisfaction with caregiving) with health behaviours (physical activity, fruit and vegetable consumption, alcohol consumption, smoking, and sleep duration). Results: The most robust associations were found between subjective caregiver burden and health behaviours, whereby caregivers reporting a higher burden reported less physical activity (Incidence Rate Ratio [IRR]:0.41; 95% CI 0.35-0.49), more alcohol consumption (IRR: 1.46; 1.20-1.77), greater smoking intensity (IRR: 1.29; 0.95-1.73), and a higher likelihood of insufficient sleep duration (Odds Ratio [OR]: 4.98; 1.58-15.74). Caregivers, who reported high objective burden, i.e. invested long hours in caregiving, were more prone to partake in health adverse behaviours, in particular greater alcohol consumption. Results also suggested that caregivers who were satisfied in their role and who received social support in caregiving were more likely to be physically active. Conclusion: Caregivers suffering from high emotional and time burden may benefit from both practical and psychological support. This support may release resources enabling individuals to partake in health promoting behaviours, or to develop coping strategies to better deal with the burden of caregiving.

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Informal caregiver burden and influencing factors in gynaecological oncology patients hospitalized for chemotherapy: a cross-sectional study

Objective To determine the level and influencing factors of informal caregiver burden in gynaecological oncology inpatients receiving chemotherapy. Methods This cross-sectional study enrolled gynaecological oncology patients and their informal caregivers between May 2018 and November 2018 and measured the caregivers' burden using the Caregiver Burden Inventory. The influencing factors were evaluated with univariate regression analysis and multivariate linear stepwise regression analysis. Results A total of 138 patients and their informal caregivers completed the questionnaire. The mean +/- SD total informal caregiver burden score was 53.18 +/- 10.97. The highest mean +/- SD score was recorded in the dimension of time-dependent burden (14.28 +/- 2.74), followed by developmental burden (13.65 +/- 2.15), physical burden (10.52 +/- 2.07), social burden (7.61 +/- 2.58) and emotional burden (7.12 +/- 1.43). Multivariate analysis showed that the informal caregiver's sex, relationship to the patient, daily duration of care, presence of chronic health problems and the duration of the patient's disease were factors influencing the level of caregiver burden. Conclusions The informal caregivers of gynaecological cancer patients hospitalized for chemotherapy experience a moderate level of burden. Nursing measures should be considered to reduce informal caregiver burden and improve the quality of lives of both patients and their caregivers.

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Impacts of informal caregiving among the family caregivers of patients with schizophrenia: A qualitative study

Background: Caregiving to patients with schizophrenia is burdensome for family caregivers and has profound effects on them. Objectives: This study aimed to explore the impacts of informal caregiving among the family caregivers of patients with schizophrenia. Methods: This qualitative study was conducted on a purposive sample of 12 family caregivers of patients with schizophrenia and 3 health-care providers. Semi-structured interviews were held for data collection, and conventional content analysis was used for data analysis. Results: Four main subthemes were developed during data analysis, namely threatened health, helplessness, patient abandonment, and personal growth. Together with their eight subcategories, these subthemes were grouped into the main theme of the "Consequences of caregiving burden." Conclusion: Caregiving to patients with schizophrenia imposes heavy burden on family caregivers and has different consequences for them. The findings of this study can improve the knowledge and awareness of mental health and psychiatric nurses about schizophrenia and its consequences for family caregivers and can help them identify family caregivers who are at risk for negative consequences and design proper family-based interventions to reduce the effects of these negative consequences.

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Impact of Supporting People with Advanced Parkinson's Disease on Carer's Quality of Life and Burden

Purpose: The aim of this study was to assess the burden and the quality of life (QoL) perceived by caregivers assisting advanced Parkinson's disease (PD) patients.; Patients and Methods: Consecutive advanced PD patients treated with levodopa/carbidopa intestinal gel (LCIG) or continuous subcutaneous apomorphine infusion (CSAI) or care as usual (CU) and their care partners were recruited during routine visits according to a cross-sectional design. Caregiver's distress was assessed by Zarit Burden Interview (ZBI) and a QoL survey to evaluate and understand the burden experienced by care partners during family and working activities.; Results: A total of 126 patients (53 LCIG, 19 CSAI and 54 CU) and their care partners were enrolled. The ZBI score boxplot showed that LCIG and CU populations have a similar distribution (ZBI inter-quartile range [IQR] values respectively 18-42 for LCIG and 19-43 for CU group), while the CSAI group has a wider score range (IQR 16-52). Caregivers assisting patients in treatment with LCIG have more time to perform family or household duties (p=0.0022), or to engage in leisure activities (p=0.0073) compared to CU, while no difference was found when compared to CSAI group. Approximately 50% of the care partners showed mood changes in the last 6 months and LCIG and CSAI had less impact on caregiver's mood compared to CU. Patients treated with LCIG were more independent in taking a bath or shower without assistance and were more able to move and walk without assistance.; Conclusion: Care partners of advanced PD patients treated with device-aided therapies have more time for their own life and a better perception of their QoL with a tendency to an improvement of mood compared with those of patients treated with CU. 

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Gender differences in the manifestation of burden among family caregivers of people with mental disorders

This is a cross-sectional study conducted with 537 family caregivers of people with mental disorders. The objective was to quantify the degree of burden experienced by men and women, and identify the most affected dimensions of their lives and the factors associated with burden manifestation by gender. The Zarit Burden Interview (ZBI) scale was used to assess burden. Mean burden was 22.8 points (SD = 6.3) for men and 27.8 points (SD = 17.8) for women. The most affected dimensions among the two groups were the same; however, among the 22 items on the scale, 11 presented significantly higher means among women. The factors associated with the manifestation of burden in both groups were as follows: low income; use of psychotropic drugs; greater degree of dependence of the service user; not receiving family support; and dissatisfaction with family relationships. For men, manifestation of burden was also associated with age. For women, there were further associations of the outcome with the presence of health problems, not having someone to share care with, and caring for the assisted person for >10 years. Our findings suggest that the degree of burden of family members caring for those with mental disorders is associated with gender, and this should be considered by services responsible for planning care shared by professionals and relatives. Guidelines for Strengthening the Reporting of Observational Studies in Epidemiology (STROBE Statement) were adhered to in this study. 

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Family Caregivers of Veterans Experience High Levels of Burden, Distress, and Financial Strain

BACKGROUND/OBJECTIVES: To describe the caregiving experiences and physical and emotional needs of family members and friends who provide care to veterans with mental, physical, and cognitive comorbidities. DESIGN: Cross‐sectional study. SETTING: National telephone surveys administered from 2017 to 2019. PARTICIPANTS: Family caregivers of veterans enrolled in the Veterans Affairs (VA) Program of General Caregiver Support Services between October 2016 and July 2018 who responded to a telephone survey (N = 1,509; response rate = 39%). MEASUREMENTS: We examined caregiver burden, depressive symptoms, financial strain, satisfaction with care, amount and duration of caregiving, life chaos, loneliness, and integration of caregiver with the healthcare team using validated instruments. We also collected caregiver demographic and socioeconomic characteristics and asked caregivers to identify the veteran's condition(s) and provide an assessment of the veteran's functioning. RESULTS: Average caregiver age was 62.2 (standard deviation [SD] = 13.7) and 69.8 (SD = 15.6) for veterans. Among caregivers, 76.7% identified at White, and 79.9% were married to the veteran. Caregivers reported having provided care for an average of 6.4 years and spending on average 9.6 hours per day and 6.6 days per week providing care. Average Zarit Subjective Burden score was 21.8 (SD = 9.4; range = 0–47), which is well above the cutoff for clinically significant burden (>16). Caregivers reported high levels of depressive symptoms; the sample average Center for Epidemiologic Studies Depression 10‐item Scale score was 11.5 (SD = 7.1; range = 0–30). Caregivers also reported high levels of loneliness and financial strain. CONCLUSION: Caregivers who care for veterans with trauma‐based comorbidities reported intensive caregiving and significant levels of distress, depressive symptoms, and other negative consequences. These caregivers require comprehensive support services including access to health care, financial assistance, and enhanced respite care. Planned expansion of VA caregiver support has the potential to provide positive benefits for this population and serve as a model for caregiver support programs outside the VA health care system.

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Family caregivers' burden in inflammatory bowel diseases: An integrative review

Inflammatory bowel disease (IBD), including Crohn's and ulcerative colitis diseases, is characterized by clinical periods of remission and relapse. Excessive care stress can have long-term negative physical and psychological consequences not only for caregivers but also for the recipients of care. This integrative review aims to identify, describe, and synthesize the results of current available research focused on the burdens of IBDs on family caregiver. An integrative review was performed using Whittemore and Knafl methodology. A systematic search of electronic databases including Web of Science, PubMed, Embase, and Scopus from January 2000 to October 2019 was conducted. Articles were included if published in English and focus on IBD burden on family caregivers. Of 730 records, 16 articles with quantitative, qualitative, and Q methodology study designs were eventually included in the review. The synthesis of these articles led to the identification of four key types of effects: biopsychosocial, daily life activities, physical health, and financial. The chronic and relapsing nature of IBD exposes family caregivers to considerable risk. Thus, the care burden of IBD patients' caregivers needs to be evaluated continuously and relieved through family-centered interventions.

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Family caregiver's burden and the social support for older patients undergoing peritoneal dialysis

SUMMARY: Background: Most elderly people undergoing peritoneal dialysis (PD) treatment have a high incidence of frailty, cognitive impairment and emotional disturbance leading to a significant impact on families. The burden experienced by the family caregivers could affect their physical and emotion health. The objective of this study was to examine the level of burden on family caregivers of elderly adults receiving PD and to identify any contributing factors. Materials and Methods: This was a cross‐sectional study employing convenience sampling. Patient–caregiver dyads were recruited from the outpatient clinic of a university hospital in China in 2019. Caregivers provided information on their perceived burden and health‐related quality of life. The elderly patients reported their functional dependence and depressive symptoms in the same interview. Linear regression analyses were used to determine the factors contributing to caregivers' burden. Results: Sixty patient–caregiver dyads were recruited. The patients had a mean age of 70.7 ± 7.4 years. The caregivers reported moderate levels of burden having ZBI score of 30.5 ± 15.9. Multivariate analyses showed that being female, perceiving one's financial status as insufficient, a low level of social support for the caregiver, depressive symptoms in the patients and disability in carrying out the instrumental activities of daily life were statistically significant predictors of caregiver burden (adjusted R2 = 0.46, p < 0.001). Conclusion: Elderly adults receiving PD who experience physical dependence and depressive symptoms are a burden for caregivers. In response to this challenge, interventions designed with the goal of supporting the emotional and mental wellbeing of caregivers are warranted.

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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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Emotional and physical exhaustion of family caregivers

Objective: The study's main purpose has been to verify the profile of musculoskeletal disorders, emotional burden and health profile of caregivers of people bearing central nervous system injury sequelae. Methods: It is a descriptive study with 23 participating caregivers. There were applied musculoskeletal injury tests (Nordic Musculoskeletal Questionnaire), overload tests (Caregiver Burden Scale) and the Physical Mobility and Transfer Risk Assessment Scale. Results: The caregivers' profile were as follows: average age of 52.9 years old, women, spouses, elementary school, responsible for providing care to the patient, residence without a salary, and an average working hours of 15.8 hours per day. A total of 47.8% received little guidance on how to provide care services. Older people suffer more with pain (spine and upper limbs) and stay more away from activities from activities compared to younger ones (p-value = 0.01). Overall tension, isolation, and emotional burden were impactful (p-value = 0.03). Conclusion: The caregivers are family members, low income, have musculoskeletal pain, considerable emotional burden and physical pain, as well as they need support from the health team.

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The Effects of COVID-19 Home Confinement in Dementia Care: Physical and Cognitive Decline, Severe Neuropsychiatric Symptoms and Increased Caregiving Burden

Purpose: This study aims to analyze home confinement impact on individuals with neurocognitive disorders (NCD) through informal caregiver's perspective and examine how it has affected caregiving burden. Methods: Thirty-six caregivers (64.94 +/- 13.54 years, 41.7% female) of individuals with NCD (74.28 +/- 6.76 years, 66.7% female) selected from the Body & Brain exercise program were interviewed over the phone. The following instruments were used: Barthel Index (BI) to assess care recipients' ability to function independently on activities of daily living (ADL), the Neuropsychiatric Inventory (NPI) to evaluate neuropsychiatric symptoms, and the CarerQol-7D/ CarerQol-VAS to determine caregiver subjective burden/well-being. Results: Pre and post-confinement comparisons showed that care recipients significantly declined their independence in ADL (p = 0.003) and increased NPI total score (MD = 5.72; 95% CI: 1.19 to 10.25, p = 0.015). As for caregivers, results also showed an increased caregiving burden (MD = -0.17; 95% CI: -0.27 to -0.08; p = 0.001) and a decline in their well-being (p = 0.015). Discussion: COVID-19 crisis sheds light on how imperative it is to find solutions and design contingency plans for future crisis, in order to ensure properly sustained support to dementia caregiving dyads and mitigate caregivers' burden.

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Effectiveness of palliative care consultation service on caregiver burden over time between terminally ill cancer and non-cancer family caregivers

Purpose: The responsibility of taking care of terminal patients is accepted as a role of family members in Taiwan. Only a few studies have focused on the effect of palliative care consultation service (PCCS) on caregiver burden between terminal cancer family caregivers (CFCs) and non-cancer family caregivers (NCFCs). Therefore, the purpose of this study is to address the effect of PCCS on caregiver burden between CFC and NCFC over time.; Methods: A prospective longitudinal study was conducted in a medical center in northern Taiwan from July to November 2017. The participants were both terminally ill cancer and non-cancer patients who were prepared to receive PCCS, as well as their family caregivers. Characteristics including family caregivers and terminal patients and Family Caregiver Burden Scale (FCBS) were recorded pre-, 7, and 14 days following PCCS. A generalized estimating equation model was used to analyze the change in the level of family caregiver burden (FCB) between CFC and NCFC.; Results: The study revealed that there were no statistically significant differences in FCB between CFC and NCFC 7 days and 14 days after PCCS (p > 0.05). However, FCB significantly decreased in both CFC and NCFC from pre-PCCS to 14 days after PCCS (β = - 12.67, p = 0.013). PPI of patients was the key predictor of FCB over time following PCCS (β = 1.14, p = 0.013).; Conclusions: This study showed that PCCS can improve FCB in not only CFC but also NCFC. We suggest that PCCS should be used more widely in supporting family caregivers of terminally ill patients to reduce caregiver burden.

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Effect of family and patient centered empowerment program on depression, anxiety and stress in patients with obsessive-compulsive disorder and their caregivers' burden

Background: Considering the importance of family participation in patients' treatment and the positive effects of simultaneous patient and family education, this study was conducted to determine the effect of a family and patient-oriented empowerment program on depression, anxiety, and stress in patients with Obsessive-Compulsive Disorder (OCD) and their caregivers' burden. Materials and Methods: This quasi-experimental study was conducted on 50 OCD patients along with their primary caregivers. The intervention group participated in eight sessions of training, each lasting from 60 to 90 min (twice a week), and the control group received the usual treatment. The Depression, Anxiety and Stress Scale, Maudsley's Obsessive-Compulsive Inventory, Goldberg's General Health Questionnaire, and Zarit's Burden Inventory were used to collect the data before, immediately after and 1 month after the intervention, and then the gathered data were analyzed with t-test and analysis of variance using the Statistical Package for the Social Sciences software, version 21. Results: The changes in the mean scores of depression (F2,48= 21.02, p < 0.001), anxiety (F2,48= 29.72, p < 0.001), and stress (F2,48= 16.52, p < 0.001) of the patients in the intervention group showed significant decrease over time; however, in the control group, there was no significant decrease in the mean scores of depression (F2,48= 1.69, p = 0.19), anxiety (F2,48= 0.47, p = 0.62), and stress (F2,48= 1.09, p = 0.34) over time. The changes in the caregiver's burden score in both groups indicated a significant decrease over time in the intervention group (F2,48= 24.70, p < 0.001) and the control group (F2,48= 33. 30, p < 0.001). Conclusions: The findings of this study revealed that concurrently training the patients and caregivers could reduce the negative emotions of the patients and their caregivers' burden.

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Disease burden and associated factors in caregivers of patients with obsessive-compulsive disorder

Objective: Obsessive-compulsive disorder (OCD) is one of the leading causes of disability and poor quality of life, with impairment in many areas. It can also adversely affect family members and friends that the person lives with, and this results in a burden. We aimed to evaluate the disease burden in caregivers of patients with OCD and the factors that negatively affect caregiver burden. Method: The study population consisted of 94 patients with OCD and their caregivers. The Yale-Brown Obsessive-Compulsive Scale (YBOCS), the Hamilton Depression Rating Scale, and the World Health Organization Quality of Life Questionnaire Brief Form were filled out by the patients, and the Burden Assessment Scale (BAS) by the caregivers. Results: Longer duration of treatment, higher YBOCS obsession and compulsion scores of the patients, and lower environmental quality of life dimension scores of the patients were found to increase the BAS scores of the caregivers. Additionally, these variables were found to be significant predictors for disease burden (BAS score) (p<0.05). Conclusion: Our study revealed that many variables affect burden, even in caregivers who have no extra burden (who has no disease to cause a burden). Caregivers of patients with OCD should be included in the behavioral and pharmacologic treatment process for the benefit of both the OCD treatment management and the protection of family health.

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Creation and Initial Validation of the Caregiver Analysis of Reported Experiences with Swallowing Disorders (CARES) Screening Tool

Purpose: Dysphagia is a debilitating condition with widespread consequences. Previous research has revealed dysphagia to be an independent predictor of caregiver burden. However, there is currently no systematic method of screening for or identifying dysphagia-related caregiver burden. The aim of this study was to develop a set of questions for a dysphagiarelated caregiver burden screening tool, the Caregiver Analysis of Reported Experiences with Swallowing Disorders (CARES), and pilot the tool to establish preliminary validity and reliability. Method: The questionnaire was developed through an iterative process by a team of clinical researchers with expertise in dysphagia, dysphagia- related and general caregiver burden, and questionnaire design. A heterogenous group of 26 family caregivers of people with dysphagia completed the CARES, along with the Eating Assessment Tool (EAT-10), the International Dysphagia Diet Standardisation Initiative Functional Diet Scale ( IDDSI-FDS), and the Zarit Burden Interview (ZBI). Information on construct validity, item fit, convergent validity, internal consistency, and reliability was determined via Rasch analysis model testing, Cronbach's alpha, and Spearman's rho calculations. Results: The final CARES questionnaire contained 26 items divided across two subscales. The majority of the questionnaire items fit the model, there was evidence of internal consistency across both subscales, and there were significant relationships between dysphagia-specific burden (CARES) and perceived swallowing impairment (EAT-10), general caregiver burden (ZBI), and diet restrictiveness (IDDSI-FDS). Conclusions: Results from the current study provide initial support for the validity and reliability of the CARES as a screening tool for dysphagia-related burden, particularly among caregivers of adults with swallowing difficulties. While continued testing is needed across larger groups of specific patient populations, it is clear that the CARES can initiate structured conversations about dysphagia-related caregiver burden by identifying potential sources of stress and/or contention. This will allow clinicians to then identify concrete methods of reducing burden and make appropriate referrals, ultimately improving patient care.

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Caring for Older Adults With Vision Impairment and Dementia

Background and Objectives: Dementia and vision impairment (VI) are common among older adults but little is known about caregiving in this context. Research Design and Methods: We used data from the 2011 National Health and Aging Trends Study, a nationally representative survey of Medicare beneficiaries, linked to their family/unpaid helpers from the National Study of Caregiving. Vision impairment was defined as self-reported blindness or difficulty with distance/near vision. Probable dementia was based on survey report, interviews, and cognitive tests. Our outcomes included hours of care provided, and number of valued activities (scored 0-4) affected by caregiving, per month. Results: Among 1,776 caregivers, 898 (55.1%, weighted) assisted older adults without dementia or VI, 450 (21.9%) with dementia only, 224 (13.0%) with VI only, and 204 (10.0%) with dementia and VI. In fully adjusted negative binomial regression analyses, caregivers of individuals with dementia and VI spent 1.7 times as many hours (95% confidence interval [CI] = 1.4-2.2) providing care than caregivers of those without either impairment; however, caregivers of individuals with dementia only (95% CI = 1.1-1.6) and VI only (95% CI = 1.1-1.6) spent 1.3 times more hours. Additionally, caregivers of individuals with dementia and VI had 3.2 times as many valued activities affected (95% CI = 2.2-4.6), while caregivers of dementia only and VI only reported 1.9 times (95% CI = 1.4-2.6) and 1.3 times (95% CI = 0.9-1.8) more activities affected, respectively. Discussion and Implications: Our results suggest that caring for older adults with VI involves similar time demands as caring for older adults with dementia, but that participation impacts are greater when caring for older adults with both dementia and VI. Translational Significance: When compared with caring for older adults with either dementia or vision impairment, caring for older adults with both dementia and vision impairment involves more hours of caregiving per month and further limits caregivers' ability to participate in social activities. Low-vision rehabilitation and integration of low-vision services into the care of older adults with dementia and vision impairment may reduce caregiver burden.

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Caregiver Well-Being and Burden: Variations by Race/Ethnicity and Care Recipient Nativity Status

Background and Objectives: Despite growing diversity among the aging population and extensive previous research on racial/ethnic minority caregivers, little research has been conducted on the potentially unique experiences and outcomes of informal caregivers of foreign-born care recipients. Using nationally representative data and the Stress Process Model, the current study examined the differences in caregiver outcomes (care burden, psychological well-being, and self-rated health) by care recipient nativity status (U.S.-born vs. foreign-born) and the extent to which caregiver outcomes vary by care recipient nativity status and caregiver race/ethnicity (non-Hispanic white, non-Hispanic black, Hispanic, and Others). Research Design and Methods: The current study used Round 5 of the National Health and Aging Trends Study and the National Study of Caregiving (N = 1,436). We conducted ordinary least squares regression to analyze the differences in caregiver's outcomes by care recipient nativity status and caregiver race/ethnicity and to investigate the impacts of the inclusion of caregiving factors (background factors, primary stressors, secondary stressors, and resources). Results: Regression analyses showed that only care burden significantly varied by care recipient nativity status after controlling for covariates. Caregivers of foreign-born care recipients reported a higher burden. However, when interactions of care recipient nativity status x caregiver race/ethnicity were introduced, non-Hispanic black and Hispanic caregivers of foreign- born care recipients were more likely to report better psychological well-being and self-rated health compared to their counterparts. Across caregiver groups, better caregiver-care recipient relationship quality and less caregiver chronic conditions were associated with less burden and better caregiver psychological well-being and self-rated health. Discussion and Implications: Care recipient nativity status and caregiver race/ethnicity may have complex effects on caregiving experiences. Given the observed significant interaction effects for caregiver psychological well-being and self-rated health, cultural factors may affect the extent to which these caregivers appraise their caregiving. Future research should delve into the appropriate ways to assess care stress as well as resilience among each caregiver group. Our results indicate the need for research, education, and practice that assess cultural and within-group differences among caregivers and inform needed changes to structural barriers. Translational Significance: Caregivers of foreign-born older adults report more care burden than caregivers of U.S.-born older adults. These caregivers typically are the adult children of their care recipient and spend more time helping with daily activities and medical care than caregivers of U.S.-born care recipients. Non-Hispanic black and Hispanic caregivers of foreign-born care recipients were more likely to report better psychological well-being and self-rated health compared to their counterparts. Culturally appropriate assessments and interventions are needed to address the unique challenges and resilience of caring for foreign-born care recipients.

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Caregiver Burden and Associated Factors Among Informal Caregivers of Stroke Survivors

BACKGROUND: Informal caregiving of stroke survivors often begins with intensity compared with the linear caregiving trajectories in progressive conditions. Informal caregivers of stroke survivors are often inadequately prepared for their caregiving role, which can have detrimental effects on their well-being. A greater depth of understanding about caregiving burden is needed to identify caregivers in most need of intervention. The purpose of this study was to examine caregiver burden and associated factors among a cohort of informal caregivers of stroke survivors. METHODS: A cross-sectional study of 88 informal caregivers of stroke survivors was completed. Caregiver burden was determined with the Zarit Burden Interview, caregiver depressive symptoms were measured with the Patient Health Questionnaire-9, and stroke survivor functional disability was assessed with the Barthel Index. Ordinal logistic regression was used to identify independent factors associated with caregiver burden. RESULTS: Forty-three informal caregivers (49%) reported minimal or no caregiver burden, 30 (34%) reported mild to moderate caregiver burden, and 15 (17%) reported moderate to severe caregiver burden. Stroke survivor functional disability was associated with informal caregiver burden (P = .0387). The odds of having mild to moderate caregiver burden were 3.7 times higher for informal caregivers of stroke survivors with moderate to severe functional disability than for caregivers of stroke survivors with no functional disability. The presence of caregiver depressive symptoms was highly correlated with caregiver burden (P < .001). CONCLUSION: Caregivers of stroke survivors with functional disabilities and caregivers experiencing depressive symptoms may have severer caregiver burden. Trials of interventions aimed at decreasing informal caregiver burden should consider the potential impact of stroke survivors' functional disability and the presence of depressive symptoms.

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Caregiver burden among informal caregivers in the largest specialized palliative care unit in Malaysia: a cross sectional study

Background: Informal caregivers (IC) are often overshadowed by the attention required by the terminally ill. This study aims to reveal the estimated proportion of caregiver burden, psychological manifestations and factors associated with caregiver burden among IC in the largest specialized Palliative Care Unit (PCU) in Malaysia. Methods: This was a cross-sectional study involving IC attending a PCU. Caregiver burden and psychological manifestations were measured using previously translated and validated Zarit Burden Interview and DASS-21 questionnaires respectively. Two hundred forty-nine samples were selected for analysis. Result: The mean ZBI score was 23.33 ± 13.7. About half of the population 118(47.4%) was found to experienced caregiver burden whereby majority have mild to moderate burden 90(36.1%). The most common psychological manifestation among IC is anxiety 74(29.7%) followed by depression 51(20.4%) and stress 46(18.5%). Multiple logistic regression demonstrated that women who are IC to patients with non-malignancy were less likely to experience caregiver burden. IC who were highly educated and spent more than 14 h per day caregiving were at least twice likely to experience caregiver burden. Finally, those with symptoms of depression and anxiety were three times more likely to suffer from caregiver burden. Conclusion: Caregiver burden among IC to palliative patients is prevalent in this population. IC who are men, educated, caregiving for patients with malignancy, long hours of caregiving and have symptoms of depression and anxiety are at risk of developing caregiver burden. Targeted screening should be implemented and IC well-being should be given more emphasis in local policies.

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Burdens experienced and perceived needs of relatives of persons with SMI − a systematic meta-synthesis

Background: Close relatives of people with severe mental illness (SMI) experience problems known as family burdens. In addition, they may have their own needs for support, something often overlooked by the healthcare system. Meta-syntheses in this area may help explore the meaning of the experience of living with someone who has a SMI. Aim: Our aim was to describe the burdens experienced and needs perceived on a daily basis by relatives to someone who has a SMI. Methods: The databases PubMed, CINAHL, and PsychInfo were searched using a systematic search strategy. Studies were screened for relevance and quality was appraised. A meta-synthesis of nine qualitative studies was then conducted. Results: The nine studies discerned the following themes. Burden themes; Forced to carry a sometimes unbearable burden; Burdened by own ill-health and disrupted relationships; Distressed and stigmatized by society. Needs themes; strengthening protective factors; Skills and practical support greatly appreciated. Conclusions: The burdens and needs of relatives of persons with SMI strongly influence their lives. They require relief from both practical and emotional burdens. Family interventions and other programs to support relatives should be encouraged with this knowledge in mind.

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Burden in primary family caregivers caring for uremic patients on maintenance peritoneal dialysis

Background: Managing the burden of care for patients with chronic debilitating diseases is an important issue. Herein, we assessed the burden in primary family members caring for uremic patients on maintenance peritoneal dialysis. Methods: One hundred seventy caregivers and 170 patients were recruited. Self-perceived scoring along the Zarit Caregiver Burden Scale (ZCBS), World Health Organization Five-item Well-Being Index (WHO-5), and Warwick-Edinburgh Mental Well-being Scale (WEMWBS) were determined for caregivers. Results: There was an inverse relationship between ZCBS and WHO-5 or WEMWBS scores in caregivers, suggesting that the higher the burden, the lesser the self-perceived well-being. One hundred two of 170 caregivers (60%) reported mild to moderate burden, indicating a common presence of mild to moderate caring-related mental and physical stress. Moreover, 31 caregivers (18.2%) reported moderate to severe burden. Several patient disease factors, including diabetes and frailty, increased caregiver burden, while insurance coverage and out-of-pocket medical costs were also positively correlated. Caregivers who lived with patients and spent longer hours in caring-related activities had higher burden scores, while regular exercise seemed to partially alleviate the burden. Conclusion: Our study clearly showed that caring for patients with maintenance peritoneal dialysis caused physical, mental, and social burden in family caregivers, with the extent of the stress being influenced by patients' disease severity and other demographic factors in both patients and caregivers.

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Assessment of burden and coping strategies among caregivers of cancer patients in sub-Saharan Africa

Background: Cancer is a devastating and debilitating chronic disease that affects both patients and family members. Available evidence has confirmed that the care of chronically ill relatives by family members can be very challenging. This is because caregiving of cancer patients often presents a high level of burden on the caregivers. Consequently, this leads to a necessity to adopt coping mechanisms to cushion the effect of the burden experienced during caregiving.; Aim: To determine the burden experienced and coping strategies among caregivers of advanced cancer patients attending University of Calabar Teaching Hospital (UCTH), Cross River State, Nigeria.; Methods: The study adopted a descriptive cross-sectional study design and the study population included informal family caregivers providing services to histologically diagnosed advanced cancer patients receiving treatment at the UCTH at the time of this survey. A researcher-developed structured questionnaire, a 22-item standardized validated Zarit Burden Interview (ZBI) and a modified 17-item Coping Orientation to Problems Experienced (COPE) Inventory were used to collect data from 250 eligible informal caregivers who were selected with regard to caregiver's characteristics, caregivers' level of burden and caregiver's coping strategies, respectively. Data gathered from the respondents were collated, coded and analyzed using Statistical Package for Social Sciences (SPSS version 24.0) software and Predictive Analytical Software (PAS version 19.0). Chi-square was used to test for association between categorical variables at the 0.05 level of significance. The results are presented in tables and charts.; Results: The respondents consisted of more females 132 (62.86%) than males 78 (37.14%).  The majority of respondents (46.2%) were aged between 31-50 years with a mean age of 35.9 ± 18.1 years. The assessment of burden level revealed that 97 caregivers (46.19%) experienced severe burden, 37 (17.62%) experienced trivial or no burden, while 76 (36.2%) perceived moderate burden. The coping strategies used by caregivers to ease the level of burden experienced during caregiving included; acceptance, reprioritization, appreciation, family, positive self-view and empathy. Also, it was documented that there was a strong association between caregivers' level of burden and coping strategies ( P = 0.030). Findings also showed that age ( P = 0.000), sex ( P = 0.000), educational status ( P = 0.000), functional ability ( P = 0.000), duration of care ( P = 0.000), desire to continue caregiving ( P = 0.000) and type of cancer ( P = 0.000) were statistically significantly associated with caregivers' coping strategies.; Conclusion: There is great recognition of the role of informal caregivers in improving the health of their relatives and family members who are chronically ill. It was recommended that support groups in collaboration with health care providers should organize a symposium for informal caregivers on the intricacies of caregiving in chronically ill patients. This would create a platform for experience sharing, information dissemination and health care professional-caregiver interaction to enhance positive caregiving outcomes. 

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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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Race/Ethnicity and Informal Caregiver Burden After Traumatic Brain Injury: A Scoping Study

Background: Informal caregivers for persons with traumatic brain injury (TBI) face a range of unique issues, and racial/ethnic group differences in caregiver challenges are poorly understood. We undertook a scoping study of peer-reviewed literature to assess the quantity and quality of available research describing differences by race/ethnicity in informal caregiving roles and burden. Methods: Using Arksey and O'Malley's framework and guided by the Preferred Reporting Items of Systematic Reviews and Meta-analyses Extension for Scoping Reviews, we conducted electronic searches of PubMed, CINAHL, PsycARTICLES, PsycINFO, Social Work Abstracts, Embase, and Scopus to identify peer-reviewed studies that examined TBI informal caregiver burden and reported on the influences of race or ethnicity. Results: Among 4523 unique publications identified and screened, 11 studies included sufficient race/ethnicity data and were included in the analysis. Of these, six studies described civilian populations and five described military Veterans Affairs (VA). Included studies revealed that nonwhite caregivers and white caregivers use different approaches and coping strategies in their caregiving role. Some studies found differences in caregiver burden by race or ethnicity, others did not. Most were limited by a small sample size and overdependence on assessment tools not validated for the purposes or populations for which they were used. This was particularly true for race/ethnicity as a factor in TBI caregiver burden in VA groups, where essential characteristics moderate the association of race/ethnicity with socioeconomic factors. Conclusions: This scoping study highlights the paucity of information on race/ethnicity as a factor in TBI caregiver burden and roles, and suggests that innovative and alternative approaches to research are needed to explore needed changes in practice. 

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Factors Influencing Burden in Spouse-Caregivers of Patients with Chronic-Acquired Brain Injury

In this cross-sectional study, we assess associated factors of burden in spouse-caregivers of patients with acquired brain injury (ABI) in the chronic phase. 35 spouse-caregivers (71% female, mean age ± SD : 55.7 ± 11.1 y) of patients with mild/moderate ABI (29% female, mean age ± SD : 57.5 ± 10.7 y), admitted to the intensive rehabilitation unit of the Institute S. Anna (Crotone, Italy) between January 2013 and December 2017, were contacted 2 years postinjury and asked to complete a series of questionnaires. The outcome measure was the Caregiver Burden Inventory (CBI) test, while several demographical and clinical data were considered as predictive factors. Two years after injury, a high level of burden was reported in 34.2% of spouse-caregivers. Stepwise multiple linear regression analyses revealed that caring for a patient with more severe disability (as measured by the Barthel Index scale) and the family life cycle (from the initial phase of engagement to marriage with adult children) explain the vast majority of variance for higher caregiver burden. The functional clinical status and the stages through which a family may pass over time were identified as areas in which the spouse-caregiver of ABI patients experienced high levels of burden in the chronic phase. 

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Changes over time in family members of adults with mild traumatic brain injury

Objective: The impact of traumatic brain injury (TBI) extends beyond the person who was injured. Family caregivers of adults with moderate to severe TBI frequently report increased burden, stress and depression. Few studies have examined the well-being of family members in the mild TBI population despite the latter representing up to 95% of all TBIs. Methods: Five areas of well-being were examined in 99 family members (including parents, partners, siblings, other relatives, adult children, friends or neighbours) of adults (aged >= 16 years) with mild TBI. At 6- and 12-month post-injury, family members completed the Bakas Caregiver Outcomes Scale, Short Form-36 Health Survey, EQ-5D-3L, Hospital Anxiety and Depression Scale and the Pittsburgh Sleep Quality Index. Outcomes and change over time and associated factors were examined. Results: At 6 months, group mean scores for health-related quality of life for mental and physical components and overall health status were similar to the New Zealand (NZ) population. Mean scores for sleep, anxiety and depression were below clinically significant thresholds. From 6 to 12 months, there were significant improvements in Bakas Caregiver Outcomes Scale scores by 2.61 (95% confidence interval: 0.72-4.49), health-related quality of life (mental component) and EQ-5D-3L overall health (P= 0.01). Minimally clinically important differences were observed in overall health, anxiety, health-related quality of life and depression at 12 months. Female family members reported significant improvements in physical health over time, and more positive life changes were reported by those caring for males with TBI. Conclusions: The findings suggest diminished burden over time for family members of adults with mild TBI.

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Burden and Preparedness amongst Informal Caregivers of Adults with Moderate to Severe Traumatic Brain Injury

This study examined the patterns of informal (unpaid) caregiving provided to people after moderate to severe traumatic brain injury (TBI), explore the self-reported burden and preparedness for the caregiving role, and identify factors predictive of caregiver burden and preparedness. A cross-sectional cohort design was used. Informal caregivers completed the Demand and Difficulty subscales of the Caregiving Burden Scale; and the Mutuality, Preparedness, and Global Strain subscales of the Family Care Inventory. Chi-square tests and logistic regression were used to examine the relationships between caregiver and care recipient variables and preparedness for caregiving. Twenty-nine informal caregivers who reported data on themselves and people with a moderate to severe TBI were recruited (referred to as a dyad). Most caregivers were female ( n = 21, 72%), lived with the care recipient ( n = 20, 69%), and reported high levels of burden on both scales. While most caregivers ( n = 21, 72%) felt "pretty well" or "very well" prepared for caregiving, they were least prepared to get help or information from the health system, and to deal with the stress of caregiving. No significant relationships or predictors for caregiver burden or preparedness were identified. While caregivers reported the provision of care as both highly difficult and demanding, further research is required to better understand the reasons for the variability in caregiver experience, and ultimately how to best prepare caregivers for this long-term role.

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Validation of two short versions of the Zarit Burden Interview in the palliative care setting: a questionnaire to assess the burden of informal caregivers

Purpose: Several validated outcome measures, among them the Zarit Burden Interview (ZBI), are valid for measuring caregiver burden in advanced cancer and dementia. However, they have not been validated for a wider palliative care (PC) setting with non-cancer disease. The purpose was to validate ZBI-1 (ultra-short version and proxy rating) and ZBI-7 short versions for PC. Methods: In a prospective, cross-sectional study with informal caregivers of patients in inpatient (PC unit, hospital palliative support team) and outpatient (home care team) PC settings of a large university hospital, content validity and acceptability of the ZBI and its structural validity (via confirmatory factor analysis (CFA) and Rasch analysis) were tested. Reliability assessment used internal consistency and inter-rater reliability and construct validity used known-group comparisons and a priori hypotheses on correlations with Brief Symptom Inventory, Short Form-12, and Distress Thermometer. Results: Eighty-four participants (63.1% women; mean age 59.8, SD 14.4) were included. Structural validity assessment confirmed the unidimensional structure of ZBI-7 both in CFA and Rasch analysis. The item on overall burden was the best item for the ultra-short version ZBI-1. Higher burden was recorded for women and those with poorer physical health. Internal consistency was good (Cronbach's α = 0.83). Inter-rater reliability was moderate as proxy ratings estimated caregivers' burden higher than self-ratings (average measures ICC = 0.51; CI = 0.23-.69; p = 0.001). Conclusion: The ZBI-7 is a valid instrument for measuring caregiver burden in PC. The ultra-short ZBI-1 can be used as a quick and proxy assessment, with the caveat of overestimating burden.

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The Trajectory of Caregiver Burden and Risk Factors in Dementia Progression: A Systematic Review

Background: Caring for patients with dementia at home is often a long-term process, in which the independence of the patient declines, and more responsibility and supervision time is required from the informal caregiver. Objective: In order to minimize and reduce caregiver burden, it is important to explore its trajectory and the accompanying risk factors as dementia progresses; the objective of this systematic review. Methods: PRISMA guidelines were followed in this systematic review. Three databases, PubMed, PsycINFO, and EMbase, were systematically searched in November 2019 using specific keywords. Results: 1,506 hits emerged during the systematic search but only eleven articles actually met the inclusion criteria for this review. The trajectory of caregiver burden is highly variable and depends on multiple factors. Important risk factors included: patients' behavioral and neuropsychiatric symptoms, and their decline in functioning in (I)ADL; the caregiver's age, gender, and physical and mental health; and, within the dyads (patient/caregiver), cohabitation and kinship. Conclusion: There is no one-size-fits-all for predicting how caregiver burden will change over time, but specific factors (like being a spouse and increased behavioral impairment and decline in functional status in the patient) may heighten the risk. Other factors, not yet comprehensively included in the published studies, might also prove to be important risk factors. Future research in the field of reducing caregiver burden is recommended to integrate the patient, caregiver, and context characteristics in the trajectory of caregiver burden, and to assess more clearly the phase of the dementia progression and use of external resources. 

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Test of the stress process model of family caregivers of people living with schizophrenia in China

Across the world, people living with schizophrenia (PLS) are often cared for by family caregivers. This is especially true in China where community-based systems of care for PLS are underdeveloped. Thus, family caregivers of PLS may experience emotional distress and burden in the absence of community-based services. Pearlin (1990) proposed a highly influential model for understanding the stress process and its relationship to health and wellbeing. Although the model has been examined worldwide, it has yet to be studied in China for caregivers of PLS. In the present study, we use Pearlin's stress process model to examine the mediating effect of perceived caregiver burden, family functioning, and caregivers' positive feelings about caregiving on PLS global functioning and caregiver depressive symptoms. We also examine whether the model differs for parent and spouse caregivers. A total of 327 primary family caregivers of PLS in Hunan province, China, were assessed cross-sectionally using culturally-validated measures. Bootstrap methods with Hayes's PROCESS Macro were used to test multiple mediation models of global functioning scores of PLS and caregiver depressive symptoms. In this first study of the stress process model of family caregivers of PLS in China, the results generally support the model. Caregiver perceived burden, family functioning, and positive caregiver feelings about caregiving all mediate the relationship between PLS global functioning and caregiver depression, with perceived caregiver burden having the strongest indirect effect. Analyses also show that the stress process differs between parent and spouse caregivers, with perceived caregiver burden a mediator for both groups but family functioning only a mediator for parent depressive symptoms. We discuss implications of these findings for extending the stress process model cross-culturally; suggest hypotheses for future research to examine parent and spouse differences; and discuss fruitful directions for intervention. • Test of the stress process model of family caregivers of persons living with schizophrenia (PLS) in China. • Results support the model with caregiver depressive symptoms predicted by global functioning of the PLS. • Caregiver burden, family functioning, and caregiver rewarding feelings mediate caregiver depressive symptoms. • The stress process model differs for parent and spouse caregivers.

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Symptoms of mood disorders in family carers of older people with dementia who experience caregiver burden: a network approach

Background informal carers of people with dementia are at greater risk of anxiety and depressive disorders if they find caregiving to be a burden. The aim of this study was to use a network analysis of cross-sectional data to investigate the relationships between anxiety and depressive symptoms in family carers of older people with dementia who experience burden. Methods sixty family carers exhibiting high levels of burden using the Zarit Burden Interview were included in the study. Participants completed the Hospital Anxiety and Depression Scale. The network analysis identified the depression and anxiety symptom network using features including a topological graph, network centrality metrics and community analysis. The network was estimated through the graphical LASSO technique in combination with a walktrap algorithm to obtain the clusters within the network and the connections between the nodes (symptoms). A directed acyclic graph was generated to model symptom interactions. Results the resulting network architecture shows important bridges between depression and anxiety symptoms. Lack of pleasure and loss of enjoyment were identified as potential gateway symptoms to other anxiety and depression symptoms and represent possible therapeutic targets for psychosocial interventions. Fear and loss of optimism were highly central symptoms, indicating their importance as warning signs of more generalised anxiety and depression. Conclusions this network analysis of depressive and anxiety symptoms in overburdened family carers provides important insights as to what symptoms may be the most important targets for behavioural interventions. 

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Sources of Caregiving Burden in Middle-Aged and Older Latino Caregivers

Objective: We aimed to identify sources of caregiver burden in middle-aged and older Latino caregivers of people with Alzheimer disease and related dementia (ADRD). Methods: Participants were recruited through an agreement with the Rush Alzheimer's Disease Center Clinic Data Repository. We conducted semistructured interviews with 16 middle-aged and older Latinos who were the primary caregiver for a family member diagnosed with ADRD. The interview guide consisted of questions and probes to capture participants' perceptions of family caregiving. Direct content analysis was performed. Results: Participants were aged 50 to 75 years (n = 16) and a majority female (n = 12). The sources of burden identified were (1) caregiver responsibilities, (2) caregiving-related health decline, (3) lack of support, (4) financial status, (5) vigilance, and (6) concerns about the future. Conclusions: The influence of gender roles seemed to play a role in caregivers' perceptions of sources of burden, especially on caregiver responsibilities and perceptions of lack of support. Latinos cultural values such as familismo and marianismo likely reinforced gender disparities in family caregiving. 

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Source of Social Support and Caregiving Self-Efficacy on Caregiver Burden and Patient's Quality of Life: A Path Analysis on Patients with Palliative Care Needs and Their Caregivers

Few studies have explored the inter-relationships of sources of social support and caregiving self-efficacy with caregiver burden and patient's quality of life among patients with palliative care needs and their caregivers. This study tested the associations of two sources of social support (family and friends) and the mediating role of caregiving self-efficacy on caregiver burden and patient's quality of life. A convenience sample of 225 patient-caregiver dyads recruited between September 2016 and May 2017 from three hospitals in Hong Kong was included in the current analysis. Results showed that the final model provided a satisfactory fit (SRMR = 0.070, R-RMSEA = 0.055 and R-CFI = 0.926) with the data, as good as the hypothesized model did ( p = 0.326). Significant associations were detected. Family support had a significant negative indirect effect on caregiver burden and a significant positive indirect effect on patient's quality of life through caregiving self-efficacy, whereas friend support had a significant positive direct effect on caregiver burden but a minimal effect, if any, on patient's quality of life. These findings emphasized (1) the importance of caregiving self-efficacy in improving caregiver burden and patient's quality of life and that (2) sources of social support may be an important dimension moderating the associations of caregiving self-efficacy with caregiver burden and patient's quality of life.

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Schizophrenia, social support, caregiving burden and household poverty in rural China

Purpose: Household poverty associated with schizophrenia has been long described. However, the mechanisms by which schizophrenia may have influenced the economic status of a household in rural communities are still unclear. This study aimed to test an integrated model of schizophrenia, social support and caregiving burden on household poverty in a rural community in China. Methods: A mental health survey using identical methods and ICD-10 was conducted in six townships of Xinjin County (population ≥ 15 years old, n = 152,776), Chengdu, China in 2015. Identified persons with schizophrenia (n = 661) and their caregivers completed a joint questionnaire of sociodemographic information, illness conditions, social support and caregiving burden. Descriptive analysis was applied first to give an overview of the dataset. Then, multivariable regression analyses were conducted to examine the associative factors of social support, caregiving burden and household income. Then, structural equation modeling (SEM) was used to estimate the integrated model of schizophrenia, social support, caregiving burden and household income. Results: Households with patient being female, married, able to work and having better social function were better off. Larger household size, higher social support and lower caregiving burden also had salient association with higher household income. The relationship between schizophrenia and household poverty appeared to be mediated by the impacts of schizophrenia on social support and caregiving burden. Conclusion: There was a strong association between schizophrenia and household poverty, in which social support and caregiving burden may had played significant roles on mediating it. More precise poverty alleviation policies and interventions should focus on supporting recovery for persons with schizophrenia, as well as on increasing social support and on reducing family caregiving burden.

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The relationship of religious coping strategies and family harmony with caregiver burden for family members of patients with stroke

Patients with stroke experience various challenges such as motor and cognitive and sensory problems, which can increase the caregiver burden of family members in long-term care. Understanding the factors related to caregiver burden is important to develop strategies to support informal caregivers. Therefore, this study aimed to examine the relationship of religious coping strategies and family harmony to caregiver burden for family members of patients with stroke. The sample of this descriptive, cross-sectional study consisted of 181 family caregivers who completed the Religious Coping Scale, Burden Interview Scale, and Family Harmony Scale – Short Form. Multiple linear regression and Pearson's correlation were performed. Pearson's correlation analysis indicated a significant positive relationship between caregiver burden and negative religious coping. A significant negative relationship was found of caregiver burden and family harmony with positive religious coping. Multiple regression analysis indicated that family harmony, amount of time spent on caregiving, and negative and positive religious coping were predictors of caregiver burden. Given the significant relationship of caregiver burden and family harmony to positive religious coping, future research should integrate religious coping strategies into multidisciplinary caregiver intervention programs to reduce caregiver burden.

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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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The relation between self‐efficacy in patients with chronic obstructive pulmonary disease and caregiver burden

Aim: The study was conducted to examine the relation between self‐efficacy in patients with chronic obstructive pulmonary disease (COPD) and caregiver burden. Material and methods: This descriptive, cross‐sectional study included 200 patients with stage II and III COPD presenting to hospital between June and November in 2017 and their caregivers. Data were gathered with a questionnaire, COPD Assessment Test and COPD Self‐Efficacy Scale from the patients. A questionnaire and Caregiver Burden Scale was used to collect data from the caregivers. Obtained data were analysed with the descriptive statistics numbers, percentages, mean, median and standard deviation. Spearman's correlation analysis was utilised to examine the relation between paired groups. Results: The mean age of the patients with COPD was 63.53 years and 51.1% of the patients were female. The mean age of the caregivers was 48.88 ± 14.09 years. 54.4% of the caregivers were aged 40–60 years, and 59.9% of the caregivers were female. The mean score was 26.97 ± 5.25 for COPD Assessment Test and 2.32 ± 0.43 for COPD Self‐Efficacy Scale. Of all the caregivers, 64.8% had mild caregiving burden and 18.1% had moderate caregiving burden. The mean score for Caregiver Burden Scale had a significant, moderate relation with the mean score for the subscale physical effort in COPD Self‐Efficacy Scale (r = −0.42; p < 0.01) and had a significant, weak, negative relation with the mean total score for COPD Self‐Efficacy Scale and the mean scores for its subscales. There was a significant, moderate, positive relation between the mean scores for Caregiver Burden and COPD Assessment Test (r = 0.51; p < 0.001) and a significant, negative relation between the scores for COPD Self‐Efficacy Scale and its subscales and the scores for CAT (r = −0.26 ‐ r = −0.52; p < 0.05). Conclusion: As self‐efficacy in COPD patients increases, their health and daily lives are affected less by COPD and caregiver burden decreases. 

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Quality of life, caregiver burden, and resilience among the family caregivers of cancer survivors

Family caregivers are critical sources of support to cancer survivors, but they also need to cope with the distress brought by the caregiving process. This study ascertained the resilience levels of the family caregivers of cancer survivors and then examined the relations between resilience, caregiver burden, and quality of life. This descriptive cross-sectional study was conducted between June and October 2019. The participants were recruited from the oncology ward of a hospital in Turkey. The Connor-Davidson Resilience Scale, Zarit Burden Interview, and Caregiver Quality of Life Index- Cancer were used to collect data from 210 family caregivers of cancer survivors. The caregivers reported low levels of resilience (49.63 ± 16.30, range = 0–100), which we found to be associated with great caregiver burden (range = −0.39 to −0.63, all P < 0.01 or 0.05) and poor quality of life (range = 0.31–0.75, all P < 0.01 or 0.05). The findings showed that resilience negatively mediated the caregiver burden (β = 0.203; 95% CI, - 0.374–0.018) and positively predicted the QoL (β = 0.431; 95% CI, 0.683–0.207). The total effects of CDRS on burden and QoL were 0.203 (CI = - 0.374–0.018) and 0.431 (CI = - 0.683–0.207) respectively. The present findings underscore the direct and indirect predicting role of resilience on QoL and caregiver burden. The family caregivers reported low levels of resilience, which in turn was associated with greater caregiver burden and poorer QoL. • The findings underscore the significant influence of resilience on caregiver burden and quality of life. • The findings clearly show that resilience is a significant contributor to the quality of life and caregiver burden of FCs. • FCs reported low levels of resilience, which in turn was associated with greater caregiver burden and poorer quality of life.

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Quality improvement study on early recognition and intervention of caregiver burden in a tertiary hospital

Background: Caregivers play a crucial role in taking over the important task of looking after patients post-hospitalisation. Caregivers who are unfamiliar with patients' post-discharge care often experience caregiver stress, while patients may see deterioration in their condition. As caregivers are our core partners in healthcare, it is therefore necessary for patient navigators to recognise, assess and address caregivers' needs or burden as early as on admission to hospital. Patient navigators are trained registered nurses whose main role is to provide patients and caregivers with personalised guidance through the complex healthcare system.; Objectives: This quality improvement study examined the efficacy of using the Zarit Burden Interview as a tool in helping patient navigators recognise caregiver burden early and the effectiveness of targeted interventions on caregiver burden.; Methods: Various quality improvement tools were used. Eighty-six patient-caregiver dyads who met the inclusion criteria were enrolled. Informal caregivers were assessed for caregiver burden using the Zarit Burden Interview during hospital admission (T0) and again at 30 days postdischarge (T1), post-intervention.; Results: There was significant improvement in the Zarit Burden mean scores from T0 to T1 reported for the 80 dyads who completed the study, even after adjusting for covariates (T0 mean=11.08, SD=7.64; T1 mean=2.48, SD=3.36, positive ranks, p<0.001). Highest burden identified by most caregivers were the personal strain; trying to meet other responsibilities and uncertain about what to do in caring for their loved one. By recognising the different aspects of caregiver burden early, patient navigators were able to focus their interventions.; Conclusion: Early recognition of caregiver burden and targeted interventions were found to be effective at reducing caregiver burden in a tertiary hospital. 

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Protocol for an embedded pragmatic clinical trial to test the effectiveness of Aliviado Dementia Care in improving quality of life for persons living with dementia and their informal caregivers

Persons living with Alzheimer's disease and related dementias (ADRD) frequently experience pain and behavioral and psychological symptoms of dementia (BPSD) which decrease quality of life (QOL) and influence caregiver burden. Home healthcare professionals however may underrecognize or lack the ability to manage BPSD. This protocol describes an ADRD palliative quality assurance performance improvement program for home healthcare, Aliviado Dementia Care-Home Health Edition. It includes training, mentoring, and a toolbox containing intervention strategies. This embedded pragmatic clinical trial will utilize a multi-site, cluster randomized control design. Recruitment will occur from three home healthcare agencies located in New Jersey, Utah, and Florida. At each agency, care teams will be randomized as clusters and assigned to either the Aliviado Dementia Care program or usual care. We plan to enroll 345 persons living with ADRD and their informal caregiver dyads. The primary outcome will be to measure QOL in both the person living with ADRD and their informal caregiver, and emergency department visits and hospital admissions. Secondary outcomes in the person living with ADRD will include the examination of pain, BPSD, antipsychotic and analgesic use. Secondary outcomes in caregivers include burden, depressive symptoms, functional health and wellbeing, and healthcare utilization. This study will be the first large-scale embedded pragmatic clinical trial in home healthcare focused on care quality and outcomes in addressing QOL in ADRD. If proven successful, the intervention can then be disseminated to agencies throughout the country to improve the quality of care for this vulnerable, underserved population. Clinical Trials.gov: NCT03255967. 

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Prevalence of depression and burden among informal care-givers of people with dementia: a meta-analysis

This meta-analysis examined the prevalence of depression and burden among informal care-givers of people with dementia (PwD) and compared the prevalence of depression between male and female, and spousal and non-spousal, care-givers. The quality of studies was evaluated and moderator variables explored. A search of six electronic databases (PsycARTICLES, PsycINFO, MEDLINE Complete, SCOPUS, Web of Science and ProQuest) was conducted from the first available date to the 31 October 2017. Inclusion criteria involved observational studies on the prevalence of burden or depression among informal care-givers of PwD. Forty-three studies were examined with a total of 16,911 participants. The adjusted pooled prevalence of depression was 31.24 per cent (95% confidence interval (CI) = 27.70, 35.01) and burden was 49.26 per cent (95% CI = 37.15, 61.46), although heterogeneity among prevalence estimates was high. Depression prevalence estimates differed according to the instrument used and the continent where the study was conducted. The odds of having depression were almost one and a half times higher in female compared to male care-givers. No significant difference was observed between spouses and non-spouses. Most studies had a medium risk of bias. Results suggest a great need within this population for interventions that are effective at reducing burden and depressive symptoms. It therefore appears imperative for dementia services that are not providing such interventions to do so. 

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Predictors of mental health problems in formal and informal caregivers of patients with Alzheimer's disease

Background: Caring for a person with Alzheimer's disease (AD) is associated with significant mental burden e.g., depression and anxiety, and difficulties with social, familial, and professional functioning. To date, few studies have examined variables which would allow for a comprehensive and detailed study of the relationship between personal resources and caregiver health status, with a majority of studies focusing on factors that contribute to increased caregiver's burden. Moreover, the available evidence fails to address differences in the functioning of formal and informal carers. Paying proper attention to the problems of nursing home staff can help identify important risk factors. Therefore, this study compared mental health problems in informal and formal caregivers and examined the relationship between mental resources and mental health problems in both groups of caregivers. Methods: This cross-sectional study examined 100 formal (n = 50) and informal (n = 50) caregivers of AD patients. Personal resources were measured with the Social Support Questionnaire (SSQ), the Generalized Self-Efficacy Scale (GSES), and the Sense of Coherence Questionnaire (SCQ), while mental health was assessed with the Depression Assessment Questionnaire (DAQ) and the General Health Questionnaire (GHQ). Multivariate stepwise regression was performed separately for both investigated groups. Results: There were no significant differences between informal and formal caregivers in terms of psychological variables, i.e., sense of coherence, social support, self-efficacy, or mental health problems. In contrast, there were different significant predictors of mental health problems in both groups. Comprehensibility (SCQ) was a significant predictor of mental health problems measured by DAQ and self-efficacy (GSES) was a significant predictor of mental health problems measured by GHQ in informal caregivers. For formal caregivers, emotional support (SSQ) and comprehensibility (SCQ) were significant predictors of mental health problems measured by DAQ, while tangible support (SSQ) and meaningfulness (SCQ) were significant predictors of mental health problems measured by GHQ. Conclusions: Personal resources are significant predictors of mental health outcomes in caregivers of AD patients. Preventive actions should therefore include assessment of factors affecting caregivers' mental health in order to provide them with necessary care and create appropriate support groups.

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Predicting Caregiver Burden in Informal Caregivers for the Elderly in Ecuador

Informal caregivers are the main providers of care for the elderly. The aim of this study is to examine the predictive value of different variables regarding caregivers and their elderly patients with respect to the caregiver's burden. A convenience sample of 688 informal caregivers and 688 elderly people from Ecuador was surveyed. Only households with one caregiver and one elderly person were considered for the study. For informal caregivers, the following standardized measures were obtained: burden (Zarit Burden Interview), neuroticism (Eysenck Personality Questionnaire Revised-Abbreviated, EPQR-A), caregiver's general health (GHQ-12), and social support (modified Duke-UNC Functional Social Support Questionnaire, FSSQ11). For the elderly, we employed standardized measures of cognitive function (short portable mental status questionnaire, SPMSQ), Pfeiffer's test, and functional dependency (Barthel scale/Index, BI). Females were over-represented in caregiving and reported significantly higher burden levels than those of males. In both male and female caregivers, the burden was best predicted by the time of caring, neuroticism, and elderly cognitive impairment. However, some predictors of burden were weighted differently in males and females. The functional independence of the elderly was a significant predictor of burden for male caregivers but not females, while caregiver competence was a significant predictor for females but not males. These variables accounted for more than 88% of the variability in informal caregivers.

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Neuropsychiatric symptoms and caregiver burden in Parkinson's Disease: Mitigating the lack of awareness!

The article focuses on Parkinson's disease (PD) is quite challenging to deal with, for patients and their caregivers alike. Topics include the caregivers help PD patients deal with their symptoms even before a formal diagnosis is made, the family member while going through the tedious process of diagnosis and treatment to palliative care, and the PD commonly affects patients in the age when they are transitioning to retirement.

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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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Myocardial infarction: Economic, health, and social impacts on informal caregivers

Objectives: The aim of the study was to measure the economic impact of informal care (IC) on caregivers assisting myocardial infarction (MI) survivors in France. Health and social impacts were also described. Methods: Data from the prospective 2008 Health and Disabilities Households Survey (Enquête Handicap-Santé), carried out among the French general population, were used to obtain information about patients with MI and their informal caregivers. To estimate the approximate monetary value of IC, three methods were used: the proxy good method, opportunity cost method (OCM), and contingent valuation method (CVM). A multivariate analysis was performed to determine the associations of the IC duration and the existence of professional care with the health indicators stated by caregivers. Results: The analysis included data from 147 caregivers. The mean value of IC ranged from €9,679 per year using the CVM to €11,288 per year using the OCM (p > .05). The mean willingness to pay for an additional hour of IC was €10.9 (SD = 8.3). A total of 46.2 percent of caregivers reported that IC negatively affected theirs physical condition, and 46.3 percent reported that it negatively affected their psychological health. In addition, 40.1 percent declared that caregiving activity made them anxious and 38.8 percent stated they felt alone. Associations were identified between the duration of IC and feeling the need to be replaced, feeling alone and making sacrifices (p < .05). Conclusions: Informal caregiver burden may be recognized in health technology assessment in order not to underestimate the cost of strategies and to facilitate the comparability of cost-effectiveness outcomes between studies.

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Mastery and Longevity in Spousal Caregivers of Persons with Dementia

Objective Researchers have consistently shown that providing care in a gradually deteriorating situation, such as dementia, can be stressful and detrimental to the caregiver's (CG) health. Although stressor appraisal is important in understanding variability in CG outcomes, the role of personal mastery, a coping resource, in shaping CG's health outcomes has not been considered. The primary goal of this paper was to determine whether personal mastery is associated with a survival advantage for spousal CGs of persons with dementia. Methods This study assessed the association of CG burden and personal mastery with longevity over a 10-year period in 71 spousal CGs of persons initially diagnosed with mild cognitive impairment. Results Over the 10 years, 16 of 71 CGs (23%) died. Cox regression models with right censoring of CGs' time to death showed that after adjusting for the health of family CG, spousal CGs who reported high levels of burden had an 83% reduced risk of death when they also reported high personal mastery (hazard ratio [HR] = 0.17, 95% confidence interval [CI] 0.04, 0.65). Conclusions Findings have implications for support programs that help build personal mastery. 

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The Longitudinal Effects of Caregiver Grief in Dementia and the Modifying Effects of Social Services: A Prospective Cohort Study

BACKGROUND Caregivers of persons with dementia (PWD) can experience loss and grief long before the death of the PWD, with such caregiver grief postulated to affect the well‐being of the PWD‐caregiver dyads. However, the longitudinal effects of caregiver grief and the moderating effects of social services are not yet clear. OBJECTIVES We investigated the longitudinal effects of caregiver grief on caregiver depression, caregivers' quality of life (QoL), and caregivers' perceived positive aspects of caregiving (PAC); and examined potential effect modification of social service utilization (dementia care services, caregiver programs, and paid caregivers). DESIGN AND SETTING A prospective cohort study with three time points of assessments (at 0, 6, and 12 months). PARTICIPANTS Family caregivers of community‐dwelling PWD (n = 178). MEASUREMENTS At time point 1 (baseline), participants completed questionnaires that captured caregiver grief, burden, and social service utilization. Outcomes that were captured over time were: depression (time points 1–3), QoL (time point 2), and PAC (time point 3). Caregiver grief as well as interaction terms with social service utilization were included in Tobit regression to examine the association with outcomes. RESULTS: After accounting for the effect of caregiver burden, caregiver grief remained associated with depressive symptoms (P <.001) and poorer QoL (P <.001). However, compared with burden, grief contributed to larger magnitudes of the adverse effects. Grief, not burden, was associated with less PAC (P =.006 and P =.746, respectively). In contrast, burden, not grief, was associated with poorer physical health (P =.010 and P =.110, respectively). Dementia care services attenuated the effect of burden but not grief; caregiver programs did not affect burden but appeared to aggravate the effect of grief; and paid caregivers attenuated the effect of burden, and partially attenuated the effect of grief. CONCLUSION: Caregiver grief has an impact on dementia caregivers, likely through a distinct mechanism from that of caregiver burden. However, prevailing social services may not be sufficient to address grief, highlighting the need to further train care workers in this respect. J Am Geriatr Soc 68:2348–2353, 2020.

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Longitudinal appraisals of family caregiving for people with disabilities enrolled in Medicaid managed care

Objective: To longitudinally examine the impact of public family support on appraisals of caregiving burden, satisfaction, and self-efficacy among families of adults with disabilities. Background: Little research exists on family support and the family experience within Medicaid managed care across disabilities and longitudinally. Method: Illinois Medicaid managed care enrollees with disabilities and their family members completed surveys over 2 years. Only families and enrollees who lived together were included (N = 182 pairs). Results: Family members with more unmet family support needs had increased caregiving burden and decreased satisfaction and self-efficacy. Family members providing more unpaid care reported higher burden. Black family members had significantly lower burden, and parents had significantly lower satisfaction and self-efficacy. Family members of enrollees with intellectual and developmental disabilities had higher self-efficacy. Conclusion: Family support is important to caregiving appraisals. Implications: There is a need for including family needs for services within assessments for services and within policy. Families provide a substantial amount of care for their family members with disabilities. More family support for family caregivers of people with disabilities is related to better caregiving appraisals within Medicaid managed care. Family caregiver support needs should be taken into account within policy and service assessments.

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An Integrative Review of Measuring Caregiver Burden in Substance Use Disorder

Background: Family caregivers contribute to engagement in treatment and adherence, reduced substance misuse and relapse, and increased well-being of recipients with substance use disorder. However, providing care has also been associated with negative emotional and physical health outcomes for caregivers. The purpose of this integrative review was to determine what instruments are used to measure caregiver burden in informal caregivers of individuals with substance use disorder. Methods: An integrative review framework was applied to examine empirical and theoretical literature to answer the guiding research question, "How is caregiver burden measured in caregivers of individuals with substance use disorder?" PubMed, CINAHL, and APA PsychINFO were searched using a combination of search terms. The initial 1,198 articles were narrowed to 32 that fit the search criteria and purpose of the review. Results: A variety of scales have been used to measure caregiver burden. Caregiver burden is operationalized as objective or subjective burden. Objective burden refers to changes in the home, finances, employment, social life, and leisure, whereas subjective burden refers to the emotional reaction of the caregiver in coping with providing care. Caregiver burden was most often reported as moderate to severe in populations with substance use disorder. Attributes measured included anxiety, depression, stress, worry, displeasure, care recipient behavioral problems and substance abuse, stigma, relationship strain, financial expenses, social support, family disruption, and the effect on caregiver physical and emotional health. Conclusions: Specific instruments that can accurately evaluate objective and subjective caregiver burden are needed to measure the quality of caregiver health. More research is necessary to better understand the physical and emotional health of caregivers of persons with substance use disorder and the factors that contribute to increased quality of life. Understanding the relationship between outcomes and protective factors could help nurses to develop prevention strategies and treatment interventions aimed at decreasing the psychosocial trauma and stress associated with caregiver burden. 

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Information seeking behavior and perceived health literacy of family caregivers of persons living with a chronic condition. The case of spinal cord injury in Switzerland

Objective: To examine the information seeking behavior and health literacy of caregivers of individuals living with spinal cord injury in Switzerland and their impact on the caregiving experience. Methods: Nationwide survey of family caregivers of people with spinal cord injury (N = 717). Caregivers aged 18+ who assisted with activities of daily living were included. Self-reported information seeking behavior, including topics, preferred sources, and health literacy were assessed and analyzed. Results: Health professionals were the most trusted source of information. Among information-seekers, higher health literacy levels were shown to be associated with lower subjective caregiver burden and, in turn, with higher caregivers' satisfaction with own health. Conclusion: Caregivers use information on different topics and coming from different sources. In order for information to improve the caregiving experience, however, caregivers need health literacy skills to make sense of it. Practice Implications: Building health literacy is a promising approach to support caregivers in their activities, reduce their subjective burden, and even to improve their health. Interventions should consider involving health professionals, as the most trusted source of information, and address both health-related and more practical issues. 

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Impact of visuospatial neglect post-stroke on daily activities, participation and informal caregiver burden: A systematic review

Visuospatial neglect (VSN) is a common cognitive disorder after stroke. The primary aim of this systematic review was to provide an overview of the impact of VSN in 3 aspects: (1) activities of daily living (ADL), (2) participation, and (3) caregiver burden. The second aim was to investigate the differences in studies focusing on populations with mean age < 65 versus ≥ 65 years. PubMed, EMBASE, Web of Science, Cochrane Library, Emcare, PsychINFO, Academic Search Premier and CENTRAL were searched systematically. Quality was assessed with the Mixed Methods Appraisal Tool. Of the 115 included studies, 104 provided outcomes on ADL, 15 on participation (4 studies with mean age ≥ 65), and 2 on caregiver burden (1 study with mean age ≥ 65). Quality assessment yielded scores ranging from 0 to 100%. VSN had a negative impact on ADL (i.e., independence during ADL and performance in self-care, household tasks, reading, writing, walking, wheelchair navigation) and participation (i.e., driving, community mobility, orientation, work). The impact of VSN on fulfilling social roles was unclear. VSN had a negative effect on caregiver burden. We found no clear age-related differences. VSN has a negative impact not only on patients' independence but particularly on the performance of ADL. Despite the far fewer studies of VSN as compared with ADL, VSN also seems to hamper participation and increase caregiver burden, but further research is needed. Because of the large impact, VSN should be systematically and carefully assessed during rehabilitation. A considerable number of different instruments were used to diagnose VSN. Diagnosing VSN at more than one level [function (i.e., pen-and-paper test), activities, and participation] is strongly recommended. Consensus is needed on how to assess VSN and its negative impact for research and rehabilitation practice. PROSPERPO Registration No. CRD42018087483. 

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Identity, relationship quality, and subjective burden in caregivers of persons with dementia

The aim of the current study was to examine the associations between informal caregivers' perception of identity change in their care-partner, the quality of the caregiver/care-recipient relationship, and caregiver burden in a sample of 56 informal caregivers of persons with dementia. Most (96.4%) of the caregivers of persons who received a dementia diagnosis reported a perceived change in the identity of their care-partner. Caregivers' perception of relationship satisfaction was measured with the Burns Relationship Satisfaction Scale for premorbid relationship and current relationship quality, and caregiver burden was measured with the Zarit Burden scale. After controlling for variance due to dementia severity, premorbid relationship satisfaction, and current relationship satisfaction, caregivers' perceived change in the identity of the person with dementia accounted for significant variance in caregiver burden. Using a mediational model, we found support for a direct effect between perceived change in identity and caregiver burden, but we also found support for an indirect effect of relationship quality on the relation between perceived identity change and caregiver burden. The demonstrated model provides an empirically supported theoretical framework for guiding potential research and development of future interventions, which we suggest should emphasize dyads.

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High Burden among Older Family Caregivers is Associated with High Prevalence of Symptoms: Data from the Swedish Study "Good Aging in Skåne (GÅS)"

Background/Aim. Certain groups of informal caregivers have been shown to have worse health compared to noncaregivers. The aim of this cross-sectional study was to explore the health and gender aspects of caregiving in an older Swedish population. Methods. Our study included 5457 participants from the longitudinal, general population study "Good Aging in Skåne." A total of 33 self-reported symptoms were obtained from questionnaires and were then divided into seven domains: depressive, musculoskeletal, gastrourinary, symptoms related to head, cardiopulmonary, symptoms related to tension, and metabolic symptoms. Multivariate logistic regression analysis was performed to assess the risk of developing symptoms in each of the seven domains, regarding caregiving burden and caregiving in relation to gender. Results. We found that caregivers, compared to noncaregivers, had a higher prevalence for depressive and tension-related symptoms. High-burden caregivers exhibited significantly more individual symptoms and a higher prevalence of symptoms in the depressive, tension, and gastrourinary domains of symptoms compared to both low-burden caregivers and noncaregivers. More than 79% of high-burden caregivers reported general fatigue, and over half of the high-burden caregivers experience depressive mood. Female caregivers showed a significantly higher risk of reporting depressive symptoms (OR = 1.54, 95% CI 1.19–1.98) and tension-related symptoms compared to male caregivers. Conclusion. Depressive and tension-related symptoms were more common in caregivers, especially in high-burden caregivers. High-burden caregivers might be at a risk of adverse mental health, and this highlights the need to offer proper support to these groups. 

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Gender Differences in the Associations Between Informal Caregiving and Wellbeing in Low- and Middle-Income Countries

Background: Health risks among informal caregivers have received inadequate attention in low and middle income countries. We examined cross-sectional data from 28611 adults 18 years and older in Ghana, India, Mexico, Russia and South Africa in the WHO Study on Global AGEing and Adult Health (SAGE) to examine gender differences in informal caregiving and wellbeing. Methods: Wellbeing was measured by self-rated health, difficulties with tasks, self-reported and diagnosed depression and anxiety. Informal caregiving was specific to adults and constructed as categorical variable with the respondent as: the main caregiver, non-caregiver but an adult in the household needs care, and no-one ill in the household; multinomial gender-stratified regression models assessed adjusted relative risk ratios (ARRRs). Results: Female caregivers were more likely to report moderate difficulties with life tasks [ARRR = 1.45 (95% CI: 1.01, 2.08)], feel mild-moderate anxiety [ARRR = 1.64 (95% CI: 1.22, 2.22)], and report feeling severely depressed [ARRR = 1.86 (95% CI: 1.28, 2.69)] compared to female non-caregivers. Even when women were not caregivers, having someone ill at home was associated with extreme difficulties with life tasks [ARRR = 2.32 (95% CI: 1.33, 4.04)]. Male caregivers, compared to no-one ill in the household, were more likely to report mild-moderate anxiety [ARRR = 1.8 (95% CI: 1.2, 3.7)] and severe-extreme anxiety [ARRR = 2.22 (95% CI: 1.07, 4.6)]. Conclusions: Caregiving for older adults results in greater health burdens, particularly mental health, for both women and men, though evidence shows that these burdens may be prominent and manifest in more diverse ways for women relative to men.

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Functional health literacy and caregiving burden among family caregivers of patients with end‐stage renal disease

Family caregivers of patients with end‐stage renal disease (ESRD) experience significant caregiver‐related burden, yet the contribution of their functional health literacy (FHL) to caregiving burden has not been elucidated. We investigated the magnitude of FHL and caregiving burden and their association in a descriptive, correlational cross‐sectional study of family caregivers of Jordanian patients with ESRD (N = 88). The short versions of the FHL for Adults and the Zarit Burden Interview were used for assessment of caregivers. Demographic and clinical information of patients and their family caregivers were self‐reported. Of family caregivers, 41% had limited FHL and 38% experienced high caregiver burden. FHL and history of comorbidity in family caregivers predicted caregiving burden independent of demographic and clinical factors. Consideration of FHL in support interventions for family caregivers may minimize some of the high perceived caregiving burden, but clinical trials of such interventions are needed to confirm this conclusion.

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Formal Long-Term Care: Informal Caregivers' Subjective Well-Being and Service Utilization

This thesis aimed to elucidate the role of informal caregiver subjective well-being in explaining formal long-term care service (LTCS) use. A systematic review and meta-analysis of literature found that elevated caregiver burden, caregiver depression, and poorer caregiver health status are associated with increased formal LTCS use. Quantitative analyses of longitudinal data collected from stroke survivors and their caregivers revealed that increased caregiving burden and caregiver depression are prospective and concurrent predictors of stroke rehabilitation use at 12-month post-stroke, and that non-distressed caregivers at 3-month post-stroke and 12-month post-stroke are likely to have cared for stroke rehabilitation users at 12-month post-stroke.

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Financial toxicity associated with a cancer diagnosis in publicly funded healthcare countries: a systematic review

Purpose: Financial toxicity related to cancer diagnosis and treatment is a common issue in developed countries. We seek to systematically summarize the extent of the issue in very high development index countries with publicly funded healthcare. Methods: We identified articles published Jan 1, 2005, to March 7, 2019, describing financial burden/toxicity experienced by cancer patients and/or informal caregivers using OVID Medline Embase and PsychInfo, CINAHL, Business Source Complete, and EconLit databases. Only English language peer-reviewed full papers describing studies conducted in very high development index countries with predominantly publicly funded healthcare were eligible (excluded the USA). All stages of the review were evaluated in teams of two researchers excepting the final data extraction (CJL only). Results: The searches identified 7117 unique articles, 32 of which were eligible. Studies were undertaken in Canada, Australia, Ireland, UK, Germany, Denmark, Malaysia, Finland, France, South Korea, and the Netherlands. Eighteen studies reported patient/caregiver out-of-pocket costs (range US$17–US$506/month), 18 studies reported patient/caregiver lost income (range 17.6–67.3%), 14 studies reported patient/caregiver travel and accommodation costs (range US$8–US$393/month), and 6 studies reported financial stress (range 41–48%), strain (range 7–39%), or financial burden/distress/toxicity among patients/caregivers (range 22–27%). The majority of studies focused on patients, with some including caregivers. Financial toxicity was greater in those with early disease and/or more severe cancers. Conclusions: Despite government-funded universal public healthcare, financial toxicity is an issue for cancer patients and their families. Although levels of toxicity vary between countries, the findings suggest financial protection appears to be inadequate in many countries. 

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Feelings, Thoughts and Experiences of Caregivers of Individuals with Substance Use Disorder

This qualitative study was carried out to determine the burden of care on Turkish caregivers of patients with substance use disorder. The sample included relatives of 42 patients hospitalized in the Akdeniz University Alcohol and Drug Addiction Research and Application Center. Individual in-depth, open semi-structured interviews were used for data collection. Moreover, demographic questions and an interview guide with questions were also used. According to the results of this study, the following themes were evaluated: difficulties experienced, coping, and needs. The findings showed that substance abuse has adverse consequences and negatively affects both the patients and their relatives in terms of economic, psychological, and social aspects. Furthermore, because of the social stigma of substance abuse, the families receive very limited social support from the environment. This weakens the well-being of the family members and increases intrafamily conflicts. We conclude that ensuring the well-being of the caregivers of patients with substance use disorder is useful in maintaining a successful treatment of addiction. Thus, policymakers should include the relatives of patients with substance use disorder in prevention and intervention programs to increase the effectiveness of the interventions. 

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Family Caregiver Burden Among Advanced Cancer Patients: Findings from the CONNECT Trial (RP421)

 Objectives: •Compare the experiences of burden for family caregivers in general to that of caregivers for patients with advanced cancer. • Evaluate patient-related factors that contribute to burden among caregivers for advanced cancer patients. • Assess how the relationship between patient-related factors and caregiver burden is affected by time spent caregiving.  Importance: Family caregivers for patients with advanced cancer spend significant time caregiving and experience burden that has been associated with poor outcomes. Patient-related factors associated with caregiver burden in this population are not well understood.  Objective(s): (1) Identify patient-related factors associated with caregiver burden and (2) examine how this relationship is modified by time spent caregiving.  Method(s): This cross-sectional study draws from baseline data collected as part of a cluster randomized trial of an oncology nurse-led primary palliative care intervention (CONNECT). Patients with advanced cancer and their family caregivers were enrolled from 17 oncology practices in Western Pennsylvania. Caregiver burden was measured using the Zarit Burden Interview (ZBI-12; range 0-48, higher scores indicating more burden). Patient-related factors included functional status (ECOG), depression and anxiety symptoms (HADS), and quality of life (FACIT-Pal). Oncologists assessed functional status, while patients reported mood symptoms and QOL. Using multivariable regression with interaction terms, we analyzed (1) independent associations between patient-related factors and caregiver burden and (2) the effect modification of hours spent caregiving on these relationships.  Results: Among 430 patient-caregiver dyads, the mean patient age was 69.8 ± 10.2 and the mean caregiver age was 61.4 ± 13. Over 70% of caregivers were women, spending an average 43.9 ± 52.7 hrs per week caregiving. Caregivers' mean ZBI-12 scores were 10.4 ±7.3, indicating low burden. Worse patient functional status (p<0.001), poorer patient QOL (p<0.001), and higher levels of patient anxiety (p<0.001) and depression (p<0.001) were significantly associated with higher caregiver burden; the number of caregiving hours per week did not affect these relationships.  Conclusion(s): Among patients with advanced cancer, patient-related factors are associated with higher caregiver burden regardless of hours spent caregiving.  Impact: Targeting interventions to support caregivers for patients with worse functional status, QOL, and mental health, may alleviate caregiver burden.

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Family Burden in Caregivers of Elderly with Cognitive Impairment residing in Rural and Tribal Population of a District in Western India -- A Baseline Study

Study Objectives: The objective was to assess cognitive impairment (CI) in adults older than 59 years, residing in rural and tribal population and to assess family burden of those who had significant CI. Materials and Methods: This cross-sectional study was conducted among adults residing in the rural population of a block in a district located in Western India in 2015. A total of 240 households from 12 villages of the block were selected by multistage and random sampling method. Mini-mental state examination and Zarit Burden Interview tools were used to assess CI and burden. Data were entered in MS Excel 2007 and analyzed with descriptive statistics and Chi-squared test. Results: A total of 212 adults aged over 59 years were studied. The overall prevalence of CI was 42.92%. There was a statistically significant difference seen in CI among females as compared to males. Interview of primary care taker showed that 32 (35.16%) caregivers had little or no burden, 53 (58.24%) had mild-to-moderate burden, and 6 (6.59%) had moderate-to-severe burden, while none had a severe burden. Conclusions: Enabling caregivers to provide at home care for longer periods before hospitalization would decrease the burden of CI.

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Factors associated with the burden of family caregivers of elderly patients with femoral neck fracture: a cross-sectional study

Background: This study aimed to study the factors associated with caregiver burden among caregivers of elderly patients with femoral neck fracture. Methods: This cross-sectional study was based on a non-probabilistic sampling of 183 elderly postoperative patients (aged 65 years or older) with femoral neck fracture who were hospitalized in the orthopedic center in our hospital and their family caregivers. Data were collected from January 2016 to June 2019. Patients and family caregivers completed the sociodemographic questionnaire. The Social Support Rating Scale (SSRS), the General Self-Efficacy Scale (GSE), and the Chinese version of the Zarit Burden Interview (ZBI) were used to evaluate social support, self-efficacy, and caregiver burden, respectively. By analyzing the clinical data of patients and family caregivers and combining the factors that affect the caregiver burden in parallel studies, we selected the factors that affected the caregiver burden in this study and conducted a multivariate analysis of these factors. P < 0.05 was considered statistically significant. Results: We observed 176 caregivers aged 69.28 ± 7.19 years old, among whom 52.3% were male, 58.0% lived in the city, 84.0% were spouses of the patients, and 67.0% had a primary school educational background. The ZBI score of the family caregivers was 37.8 ± 8.9, and 82.7% of the caregivers were under a moderate to severe burden. The patient's functional status, Harris score, and pain score and the caregiver's SSRS scores, GSE scores, and the ratio of medical expenses to monthly income per capita were factors that affected the caregiver burden. Conclusions: Most family caregivers of elderly patients with femoral neck fracture are subject to a considerable care burden, and social support and self-efficacy intervention are conducive to reducing the caregiver burden. 

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Factors associated with health‐related quality of life among family caregivers of people with Alzheimer's disease

Aim: Based on the ageing population and the inadequate healthcare system in China, the majority of care for patients with Alzheimerʼs disease (AD) is provided by family caregivers. Caregivers suffer a long‐term heavy care burden and pressure, which affects their physical and mental health. The present study aims at investigating health‐related quality of life (HRQOL) among family caregivers of AD patients and exploring its influencing factors. Methods: This study included 206 family caregivers (76 male, 130 female) of AD patients recruited from one Tier 3 hospital, one psychiatric hospital, two gerocomiums and three communities in Ganzhou city, Jiangxi Province, China. Measures included the World Health Organization (WHO) Quality of Life (WHO/ QOL‐BREF) questionnaire, Zarit burden of care scale (ZBI), and social support rating scale (SSRS).We performed face‐to‐face or telephone interviews with patients and caregivers. The association between possible factors and changes in HRQOL was examined through stepwise multiple regression analysis. Results: The majority of family caregivers felt moderate to severe level of burden. The average HRQOL score was 54.24 ± 10.36. The mean SSRS score was 30.4 ± 10.9. The average ZBI score was 41.2 ± 12.8. The HRQOL of family caregivers of AD patients was negatively correlated with the neuropsychiatric questionnaire score, ZBI score, and chronic diseases of caregivers (P < 0.05), and positively correlated with the SSRS score (P < 0.05). Conclusion: Reduced QOL was highly prevalent among AD patient family caregivers, and the level of burden, neuropsychiatric symptoms of patients, social support, and chronic diseases of caregivers were factors associated with HRQOL, and the effect of care burden is greatest. Interventions aimed at reducing the level of burden should focus not only on the patient but also on the caregiver.

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Factors associated with caregiver burden among adult (19–64 years) informal caregivers – An analysis from Dutch Municipal Health Service data

Due to the ageing population and the rising prevalence of chronic diseases, it is expected that the demand on informal caregivers will increase. Many informal caregivers experience burden, which can have negative consequences for their own health and that of the care recipient. To prevent caregiver burden, it is important to investigate factors associated with this burden. We aimed to identify factors associated with caregiver burden in adult informal caregivers. Among a sample of adult informal caregivers (n = 1,100) of the Dutch region of Zaanstreek‐Waterland, perceived caregiver burden, demographic factors, caregiving situation, health‐related factors and socio‐financial factors were measured as part of the national Health Survey in 2016. Using univariate and multivariate logistic regression analysis, for which a backward selection method was applied, associations with caregiver burden were studied. In the multivariate model, time spent providing informal care was significantly associated with perceived caregiver burden, with an odds ratio (OR) [95% confidence interval] of 7.52 [3.93–14.39] for those spending >16 hr compared to 1–2 hr on informal care. Also providing care to their child(ren) (OR: 2.55 [1.51–4.31]), poor perceived health (OR: 1.80 [1.20–2.68]) and loneliness of the caregiver (OR: 2.05 [1.41–2.99]) were significantly associated with caregiver burden. To possibly prevent and reduce informal caregiver burden, factors associated with such burden should be intervened on. As such, special attention should be paid to caregivers who provide many hours of care or provide care to their child(ren), as well as those who have a poor perceived health themselves and/or experience feelings of loneliness.

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Exploring mental health carers’ caregiving experiences in France

Purpose France, once a pioneer in psychiatry, is now sinking as its population faces major mental health challenges. This includes the 12 Million French individuals with psychiatric conditions, the lack of appropriate structures and the shortage of skilled mental health professionals, but it also leaves families in critical situations. The purpose of this study is to explore the carers’ caregiving experiences and to suggest ways to organise educational programmes to support mental health carers in France. Design/methodology/approach The research was conducted from January 2018 to November 2019. It included French carers of patients with mental conditions. Recorded semi-structured interviews were used and findings were analysed through an inductive thematic analysis and regrouped into key themes. Findings Participants had overwhelming negative representations of “mental illness”. The fact that they were excluded from participating in the patient’s health management further added to their misconceptions around mental disability, it limited their communication with their family and amplified their burdens. Research limitations/implications There is an urgent need for carer empowerment; carers should be included in educational programmes, they should benefit from French Government subsidies and social-network assistance and receive quality assistance by trained mental health professionals. The critical situation of carers can only be addressed by combining these three steps and through the action of appropriate actors in the field of mental health, thus alleviating the current paradigm of psychiatric care in France. Originality/value Thousands of research papers regarding carers have been published in other countries. In addition yet, to the knowledge, only a few investigations on French mental health carers have been conducted to this day. The singularity of this research lies in the rare individual interviews, which provided us with first-hand testimonies of mental health carers in France. This data could be of vital aid for professionals and for policymakers when advocating for better support of carers in mental health.

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An Exploration of Family Caregiver Experiences of Burden and Coping While Caring for People with Mental Disorders in Saudi Arabia-A Qualitative Study

Family caregivers of people with mental disorders face a number of burdens and stressors, such as associative stigma and burnout. These burdens are often a result of their caring role coupled with insufficient support or ineffective coping strategies, which can affect their quality of life and biopsychosocial integrity that, in turn, may affect the care they provide. This study aimed to explore the experiences of family caregivers of people with mental disorders, through examining the burdens that they face and the coping strategies that they use. Using a descriptive qualitative approach, 13 semi-structured interviews were conducted with members of the Saudi public, recruited through popular social media platforms and analyzed using thematic analysis. Five main themes were constructed from the data: Type of care, Challenges, Coping and support, Perceptions of public awareness, and Messages to others. The findings emphasize the different types of burdens that caregivers experience, and their needs that require a range of responses such as educational training on effective coping strategies, and psychological support in the form of counseling or group therapy. This study highlights the voice of caregivers and their message to the public, in order to correct the misconceptions surrounding mental disorders and those associated with them.

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Experiences and perspectives of the parents of emerging adults living with type 1 diabetes

Introduction Whereas it is widely recognized that emerging adulthood can be a difficult time in the life of an individual living with type 1 diabetes, relatively little is known about the experiences of their parents or guardians. These individuals once shouldered much of the burden for their child's diabetes 'self'-management, yet their contribution is often overlooked by the adult healthcare system. Here, we set out to gain an understanding of the perspectives of parents of emerging adults living with type 1 diabetes. Research design and methods Semi-structured interviews were performed with a purposeful sample of parents of emerging adults with type 1 diabetes recruited from two urban young adult diabetes clinics and through a national diabetes charity. Thematic coding was derived using a constant comparative approach. Results Analysis of interviews with 16 parents of emerging adults with type 1 diabetes identified three themes: parental experiences of the transition to adult care; negotiating parent-child roles, responsibilities and relationships; and new and evolving fears. Parents spoke in detail about the time surrounding their child's diagnosis of type 1 diabetes to emphasize the complexity of diabetes care and the need to establish a 'new normal' for the family. In turn, adolescence and emerging adulthood required a renegotiation of roles and responsibilities, with many parents continuing to play a role in high-level diabetes management. Several parents of emerging adults with type 1 diabetes (particularly those of young men) vocalized worries about their child's readiness to assume responsibility for their self-care, and some expressed frustration with the apparent dichotomy in the role expectations of parents between the pediatric and adult care settings. Conclusions Adult healthcare providers should recognize both the ongoing involvement of parents in the 'self'-management of emerging adults with type 1 diabetes and the unique aspects of the caregiver burden that they experience.

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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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Emotional Burden and Perceived Social Support in Male Partners of Women with Cancer

Background: The aim of this study was to describe the correlations between the psychosocial burden on male caregivers and their perception of social support, as well as distress, anxiety, and depression among their partners in the first six months after a cancer diagnosis.; Methods: A cross-sectional, longitudinal and observational study was conducted on a group of 61 couples, with the use of Zarit Burden Interview (ZBI), Caregiver Burden Scale (CBS), Berlín Social Support Scales (BSSS), Hospital Anxiety and Depression Scale (HADS) and Distress Thermometer (DT). Statistical analysis was performed using Statistica v.13.; Results: A strong positive correlation between the ZBI and CBS, as well as between support-seeking and the emotional involvement of male partners, was documented. The negative correlation between the lack of instrumental support and a much greater burden on caregivers, in emotional, social, and family life was documented. The level of distress, anxiety, and depression, as well as family problems reported by female patients, were positively correlated with the male caregiver's burden. A demographic analysis showed significant relationships between the number of offspring and the negative health indicators of patients and their partners.; Implications: The obtained results encourage deeper reflection on the need to improve the availability of instrumental support for male caregivers and support for families with an oncological ill parent in caring for minor children, and to maintain the social activity of the caregiver.

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Effect of lower extremity amputation on caregiving burden in caregivers of patients with diabetic foot: Prospective cohort study

Lower extremity amputation as a treatment of diabetic foot ulcer is probably a major burden for the patient's family and friends, who typically act as caregivers and support the patient in coping with the physical disabilities and emotional distress. In the present prospective study, we investigated the effects of different lower extremity amputation levels for diabetic foot ulcer treatment on caregivers of patients with diabetes using the Zarit Burden Interview (ZBI‐12) scale. Patients with diabetic foot ulcers who underwent unilateral major amputation (above‐below knee) and minor amputation of foot (heel sparing) and their caregivers were requested to volunteer to participate in this study from June 2016 to December 2018. The ZBI‐12 form was completed immediately preoperatively and 3 and 6 months after postoperatively. In the minor amputation group, the mean age of the 51 patients was 72.1 years. In the major amputation group, the mean age of the 88 patients was 73.7 years. Both groups of caregivers of patients with minor amputation and major amputations showed a significant improvement in ZBI‐12 score when compared preoperatively and at 3‐ and 6‐month follow‐up visits. The mean ZBI‐12 score was significantly higher in the major than in the minor amputation group in preoperative and all postoperative visits. The absence of the ankle joint in the below‐ or above‐knee amputation renders it more difficult for the amputee to quickly learn the use of prosthesis, thereby increasing the burden of the patient and caregivers. We found that lower extremity amputation for the treatment of chronic diabetic foot ulcers has significantly favourable effect on the caregiver burden, and thereby heel sparing was considerably more effective for the caregiver burden.

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The effect of family-centered empowerment program on the family caregiver burden and the activities of daily living of Iranian patients with stroke: a randomized controlled trial study

Dependence of stroke survivors regarding the ability to perform activities of daily living imposes a burden on family caregivers. The study evaluated the effect of the family-centered empowerment program on the ability of Iranian patients with stroke to perform activities of daily living, as well as on family caregiver burden. In this randomized controlled trial study, a total of 90 pairs of patients with stroke and their family caregivers was selected and randomly assigned to the intervention or control groups. Patients and their family caregivers participated in four family-centered empowerment program sessions over four consecutive days while the patient was hospitalized. The difference in the ability of patients with stroke in the intervention and control groups to perform activities of daily living was not significant 2 weeks after the intervention. However, the ability of patients with stroke in the intervention group to perform activities of daily living increased significantly 2 months after the intervention compared with the control group: 66 ± 35.95 and 51.31 ± 36.28, respectively (p = 0.047). Two weeks after the intervention, the family caregiver burden significantly decreased in the intervention group (29.55 ± 15.38) compared with the control group (38.77 ± 18.53 and p = 0.012). The burden in the intervention group also decreased 2 months after the intervention compared with the control group: 22.95 ± 15.68 and 36.11 ± 18.88, respectively (p < 0.001). Nurses can use the family-centered empowerment program to improve the quality of life of patients with stroke, and to reduce the burden of family caregivers.

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Economic burden of the persistent morbidity of nodding syndrome on caregivers in affected households in Northern Uganda

Background Nodding syndrome (NS), is an unexplained form of epilepsy which leads to stunted growth, cognitive decline, and a characteristic nodding of the head. Current data about its impact on households in Uganda is scarce. Therefore, this study aims to assess the economic burden of the persistent morbidity of NS on caregivers in affected households in Northern Uganda. Methods A cross-sectional cost-of-care study was conducted from January 2019 to February 2019 in Lakwela village-Northern Uganda in 14 households, who are members of a community-based organization (CBO) established in the village with the support of a Japanese research team, (Uganda-Japan Nodding Syndrome Network). Data was collected through questionnaires. Both direct (medical and non-medical) and indirect (informal care) costs of caregiving were assessed. Indirect costs were valued using the human-capital method as loss of production. Results Direct costs constituted a higher proportion of costs for NS households, accounting for on average 7.7% of household expenditure. The annual weighted mean cost per NS patient was estimated at 27.6 USD (26.4 USD direct costs, 96.2% and 1.2 USD indirect cost, 3.8%). Average time spent on informal caregiving was 4.4 +/- 1.7 (standard deviation) hours/week with an estimated annual informal caregiving cost of 24.85 USD and gross domestic product (GDP) loss of 412.40 USD. Conclusion Direct costs due to NS are still high among households in this study. More studies are needed to investigate measures that could help bring down these costs and equally reduce the day-to-day disruption of caregiver's activities; consequently, improving the lives of these affected households and communities.

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Dysphagia-Related Caregiver Burden: Moving Beyond the Physiological Impairment

Purpose: The biopsychosocial ramifications of dysphagia are widespread. However, its influence on informal caregivers and families is often overlooked. Ultimately, the health and well-being of an entire family is central to care provision. This tutorial introduces readers to the current literature on dysphagia-related caregiver burden and third-party disability, illustrates the consequences of such burden on both caregivers and patients, and suggests strategies for better supporting patients' informal caregivers. Conclusions: It is essential that speech-language pathologists recognize that the consequences of dysphagia are not limited to the impairment itself and acknowledge dysphagia's substantial impact on the entire family system. More general health care literature suggests that asking caregivers individual questions, modifying the language used to talk with them, providing them with targeted education and resources, and organizing support groups may all be beneficial for increased perceived support and self-efficacy. Ultimately, in order to best meet the needs of our patients with dysphagia, we must also better meet the needs of their families and other informal caregivers.

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Does Family Caregiver Burden Differ Between Elderly and Younger Caregivers in Supporting Dying Patients With Cancer? An Italian Study

Context: The aging of the world's population increasingly calls on older people to care for their cancer relatives. This scenario confronts clinicians involved with end-of-life care with an imposing challenge: elderly family caregivers could have a different perception of the burdens associated with assistance compared to their younger counterparts. Palliativists need to know what limits and resources of these new age categories of caregivers could be for a global management of dying patients with cancer and their family. Objectives: To evaluate the caregiver burden in family caregivers supporting dying patients with cancer in order to compare the differences between 2 different caregivers age groups (younger vs elderly population). Methods: This is a cross-sectional study. A total of 174 family caregivers of hospice patients were interviewed through the Caregiver Burden Inventory (CBI). The sample group was divided into 2 subgroups aged <65 (younger group) and ≥65 years old (elderly group). Results: Compared with younger caregivers, the elderly group reported significantly higher scores in the CBI–developmental subscale (P =.009) confirmed by the generalized linear model (multivariate) evaluation that included possible predictors in the model. No further differences were found between the 2 age groups in the other CBI scores (time-dependent, physical, social, emotional, and overall score). Conclusion: Elderly caregivers are at high risk for experiencing developmental burden. This finding could prompt mental health professionals to pay greater attention to the value that assistance to the family member can have on their personal story and on that of the family or couple.

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Diabetes-Related Topics in an Online Forum for Caregivers of Individuals Living With Alzheimer Disease and Related Dementias: Qualitative Inquiry

Background: Diabetes and Alzheimer disease and related dementias (ADRD) are the seventh and sixth leading causes of death in the United States, respectively, and they coexist in many older adults. Caring for a loved one with both ADRD and diabetes is challenging and burdensome.Objective: This study aims to explore diabetes-related topics in the Alzheimer's Association ALZConnected caregiver forum by family caregivers of persons living with ADRD. Methods: User posts on the Alzheimer's Association ALZConnected caregiver forum were extracted. A total of 528 posts related to diabetes were included in the analysis. Of the users who generated the 528 posts, approximately 96.1% (275/286) were relatives of the care recipient with ADRD (eg, child, grandchild, spouse, sibling, or unspecified relative). Two researchers analyzed the data independently using thematic analysis. Any divergence was discussed among the research team, and an agreement was reached with a senior researcher's input as deemed necessary. Results: Thematic analysis revealed 7 key themes. The results showed that comorbidities of ADRD were common topics of discussions among family caregivers. Diabetes management in ADRD challenged family caregivers. Family caregivers might neglect their own health care because of the caring burden, and they reported poor health outcomes and reduced quality of life. The online forum provided a platform for family caregivers to seek support in their attempts to learn more about how to manage the ADRD of their care recipients and seek support for managing their own lives as caregivers. Conclusions: The ALZConnected forum provided a platform for caregivers to seek informational and emotional support for caring for persons living with ADRD and diabetes. The overwhelming burdens with these two health conditions were apparent for both caregivers and care recipients based on discussions from the online forum. Studies are urgently needed to provide practical guidelines and interventions for diabetes management in individuals with diabetes and ADRD. Future studies to explore delivering diabetes management interventions through online communities in caregivers and their care recipients with ADRD and diabetes are warranted.

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Determinants of overburdening among informal carers: a systematic review

Background: The world's population is ageing, resulting in rising care demands and healthcare costs, which in turn lead to a shift from formal to informal care. However, not only is the number of potential informal carers fast decreasing, but also informal caregivers are experiencing a higher caregiver burden. This literature review aims to synthesize the literature on the common determinants of caregiver burden in Western countries, to help ensure future continuation of informal care in the home context, and to improve or sustain the quality of life of caregivers and patients alike. Method: A systematic review of peer-reviewed articles included in PubMed, Scopus, and/or PsychInfo was conducted. Results: Seventeen articles were included. The most important predictors were the duration of caregiving and the patient's dependency level, in terms of both physical and mental dependency stemming from decreased cognitive capacity or behavioural problems. Some specific illnesses and role conflicts or captivity also increased caregiver burden, whereas social support lowered it. Being a female caregiver or having an adult-child relationship led to a higher burden. Conclusions: The most important predictors of caregiver burden are the duration of caregiving and the patient's dependency level. In addition, the patient's behavioural problems and cognitive capacity determine dependency level, and thus care burden. Interventions to relieve burden need to be adapted to the illness trajectory of specific diseases and corresponding needs for social support for both the recipient and the caregiver. Changing role expectations, leading to men being more involved, could reduce the disproportionately high burden for women.

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Determinants of caregiver burden of persons with disabilities in a rural district in Egypt

Background: Family caregivers are critical partners in the plan of care of people with disabilities. The study aims to demonstrate the factor structure and internal consistency of the Caregiver Burden Inventory (CBI) among the studied caregivers of disabled persons and to determine the effects of patients' and caregivers' characteristics on the burden and its dimensions. Methods: A cross-sectional study among 260 family caregivers of disabled patients was carried out in a randomly chosen rural area, Minia, Egypt, 2019. Exploratory factor analysis (EFA) was conducted to determine the factorial validity of the CBI. Multiple linear regression was used to identify the significant factors affecting the burden. Results: Factor analysis resulted in a five-factor solution using 20 items (four for each dimension) accounting for 72.7% of the total variance. The CBI and its dimensions showed high internal consistency (Cronbach's alpha value > 0.70). Education of caregiver, family income, mental impairments, and mixed disabilities were significant predictors of total CBI burden. Conclusions: CBI is an effective multidimensional measure of the caregiver burden of disabled subjects. Caregivers experienced a distinct level of burden that is determined by caregiver and care recipient characteristics. Therefore, support and individualized counseling services should be optimized.

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Depression in People With Dementia and Caregiver Outcomes: Results From the European Right Time Place Care Study

To investigate the cross-sectional associations between depression in people with dementia and both caregiver burden and quality of life in 8 European countries, and to test these associations compared with the presence of other neuropsychiatric symptoms. Cross-sectional study. In total, 1223 dyads comprised of informal caregivers and people with dementia living in a community-dwelling setting, recruited from the Right Time Place Care study, a cohort survey from 8 European countries. To test the associations between depression (according to the Cornell Scale for Depression in Dementia) and informal caregiver burden (defined by the Zarit scale and hours of supervision in terms of Resource Utilization in Dementia), distress (defined by the Neuropsychiatric Inventory Questionnaire distress score), and quality of life (according to the visual analogue scale and 12-item General Health Questionnaire). Linear regressions showed an association between depression and main outcomes (Zarit scale: β 3.7; P =.001; hours of supervision: β 1.7; P =.004; Neuropsychiatric Inventory Questionnaire distress score: β 1.2; P =.002). A similar association was found concerning psychological and overall well-being (12-item General Health Questionnaire: β 1.8; P <.001; Euroqol Visual Analogue Scale: β −4.1; P =.003). Both associations remained significant despite the presence of other NPS and after adjusting for confounders. Further studies are needed to assess whether providing tailored strategies for optimizing diagnosis and managing of depression in people with dementia might improve caregiver quality of life and reduce their burden in the community-dwelling setting.

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Cross‐cultural differences in Parkinson's disease caregiving and burden between the United States and Mexico

Introduction: Given the rapidly aging population in both the United States and Mexico, rates of Parkinson's disease (PD) are likely to rise in both countries, suggesting that the number of individuals providing informal care will also increase, and the healthcare system will have to consider the burden this places upon caregivers. Therefore, the purpose of the current study was to examine differences in PD caregiving and burden between the United States and Mexico. Methods: Data were collected from PD caregivers in the Parkinson's Clinic at the Hospital Civil Fray Antonio Alcalde in Guadalajara, Mexico (N = 148) and the Parkinson's and Movement Disorders Center at Virginia Commonwealth University in Richmond, Virginia (N = 105) regarding caregiver demographics and self‐reported burden. Results: Despite considerably more time spent in caregiving duties, higher rates in unemployment or underemployment, and lower education levels, Mexican PD caregivers reported significantly less personal strain and role strain than did their United States counterparts. Even after controlling for these and other demographic differences between the two sites, the differences in caregiver burden remained. Conclusions: Latino cultural values in Mexico encouraging the importance of caring for family members with PD and respecting elders may promote caregiving and even make it a point of cultural pride, helping to overcome potential negative effects on caregivers seen in the United States. The scientific and medical communities should view caregiving as a culturally embedded and potentially positive role, rather than predominantly as burdensome as frequently conceptualized in Western or Eurocentric cultures. 

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Challenges and barriers in mental healthcare systems and their impact on the family: A systematic integrative review

The aim of this systematic integrative review is to analyse the challenges and barriers found in mental healthcare systems and the impact they have on the family. Searches were made of the Web of Science, Scopus, Medline and Cochrane databases using terms relating to mental health, family care and healthcare systems. We included and critically evaluated studies published in English between 2015 and 2019 that directly or indirectly analysed public mental health policies and the consequences they have for the family. We analysed our findings following the inductive content analysis approach. A total of 32 articles that met quality indicators were identified. Very closely related structural, cultural, economic and healthcare barriers were found that contribute to the treatment gap in mental health. The family covers the care systems’ deficiencies and weaknesses, and this leads to overload and a diminishing quality of life for caregivers. It is acknowledged that people with mental illness and their families should be able to participate in the development of policies and thus contribute to strengthening mental healthcare systems worldwide.

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Caring for the caregiver: a systematic review characterising the experience of caregivers of older adults with advanced cancers

The steady advances in oncology bring a host of therapeutic options for older adults (≤65 years old) with cancer. As these patients experience this proliferation of anticancer therapies, their caregivers too have witnessed their role rapidly expanding and evolving as they care for these individuals. To better understand the caregiver experience, a review of the current literature on informal caregiving and cancer caregiving was conducted. These informal caregivers are often individuals with a strong personal connection to the person with advanced cancer, such as a close relative, spouse/partner or friend. Caregivers provide a broad range of assistance with most aspects of day-to-day life. However, we have limited knowledge of the impact of this role on the caregivers themselves, particularly in the context of an older adult patient and their unique needs. Here, we explore the data on caregiver experience when caring for a person with advanced cancers-specifically, we characterise the symptom burden and effects on the caregiver well-being with emphasis on the care of older adults with cancer. 

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Caring for caregivers: Understanding and meeting their needs in coping with first episode psychosis

Aim: The first episode of psychosis is a challenging time for both patients and those who care for them. Although literature on treatment is plentiful, literature on how to best support caregivers is more scarce. This review was undertaken to better understand the caregiver experience, determine which interventions most effectively alleviate their burden and examine which other factors may affect outcomes. Methods: Articles were retrieved from PubMed and OVID using the following search terms: first episode psychosis (FEP), schizophrenia, caregiver, intervention and burden in various combinations. Only peer‐reviewed articles germane to FEP caregiver experience and interventions written in English were included. Results: Caregivers can experience grief, guilt and anxiety during this time. While concerned for their loved one, their own lives take a back seat and their mental and physical health are adversely affected. Some are better prepared to cope and are typically warm, decisive, confident and optimistic. Their families are organized and flexible. Others are less prepared and are more likely to have poor self‐esteem, use avoidant coping strategies and be overly critical. Their families are controlling and have difficulty with communication and balance. These caregivers stand to benefit most from interventions. Conclusions: Effective interventions incorporate psychoeducation, problem solving strategies, peer support and clinician guidance. A higher level of interaction with facilitators and peers is associated with better results. Benefits include decreases in caregiver burden, depressive and anxious symptoms and feelings of shame and isolation. Although the literature has yet to isolate the key factors of a successful intervention, this review provides practical suggestions for clinicians and further illustrates the need for more research. 

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Carer burden and dyadic attachment orientations in adult children-older parent dyads

• Anxious-avoidant attachment pairings predict increased burden in adult-child carers. • Similar attachment insecurity in parent-child dyads do not predict burden. • Taking a dyadic approach to examining attachment in ageing families is critical.

This study takes an interpersonal approach to the study of carer burden in families where adult children care for older parents. The aim of the study was to determine whether different pairings of attachment insecurity in older parent-adult child dyads are predictive of carer burden. Seventy dyads whereby adult children provided weekly care to their older parents completed self-report measures of attachment. Adult children also completed a measure of carer burden. Anxious-avoidant attachment insecurity pairings in parent-child dyads were associated with increases in carer burden. However, anxious-anxious and avoidant-avoidant attachment insecurity pairings were not associated with burden. The attachment insecurity of the care-recipient was found to moderate the association between a carer's attachment insecurity and burden, but only when the care-recipient's attachment insecurity differed to that of the carer's. These findings have implications for research, policy, and practice in aged care. The findings highlight the importance of focusing on attachment insecurity in aging families as well as taking a dyadic perspective when studying caregiving outcomes such as carer burden. The findings suggest that carers who may require the greatest support are those whose parents demonstrate contrasting orientations of attachment insecurity. 

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Caregiving Burden and self-care among European-American and Chinese-American family caregivers of people with mental illness

Family caregivers (FCs) of persons with mental illness (PMI) often experience caregiving burdens that contribute to poor mental health. As compared to European-American FCs, Asian-American FCs may experience greater caregiving burden due to an increased likelihood of cohabiting with PMIs. Yet, limited research exists on the caregiving experience of Asian-American FCs and on how self-care practice and social support mediate caregiver burden among FCs of PMIs. Using a cross-sectional mixed-method design this study explored the impact of caregiving burden on mental health outcomes among Chinese-American and European-American FCs. The quantitative data showed similar caregiving burden between the two groups and a partial mediation role for self-care practice on FCs' mental health. The qualitative data showed that FCs from the two groups utilized different types of social support. Findings suggest the need for mental health professionals to develop intervention programs to enhance self-care practices and social support for FCs when working with PMIs.

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Caregiver Burden, Quality of Life and Related Factors in Family Caregivers of Dementia Patients in Turkey

This study aimed to evaluate caregiver burden and quality of life (QoL) and their predictors in family caregivers of dementia patients. A descriptive cross-sectional survey was carried out with a sample of 102 patients and their family caregivers. The Caregiver Burden Inventory (CBI) and Short Form-12 (SF-12) were used to collect data. CBI mean score was 37.97 ± 21.30. Mean scores of SF-12 sub-domains varied between 36.02 and 77.94 and were significantly lower as compared to normative means of the general population, excluding only the physical health subdomain. Among several patient and caregiver-related correlations, the number of medications and worse cognitive function of the patient, caregiver's age and having limited space at home were found as predictors of burden, whereas caregiver's chronic disease and having a limited space were predictors of QoL. Also, the burden and QoL were correlated. This study demonstrated a high burden and low QoL in dementia caregivers. In societies where caregivers are mostly informal such as that in Turkey, supportive systems should be established. 

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Burden on Caregivers of Adults with Multiple Chronic Conditions: Intersectionality of Age, Gender, Education level, Employment Status, and Impact on Social Life

Intersectionality analysis is the study of overlapping or intersecting social identities. Intersecting social identities may have an impact on the perception of burden by family caregivers of older persons with multiple chronic conditions (MCC). The purpose of this study was to explore the interaction of social factors on the burden of caring for older adults with MCC. A total of 194 caregivers of older adults with MCC were recruited from Alberta and Ontario. Survey data were collected at two time points, six months apart. Additive and multiplicative models were analysed using a generalised linear model to determine the level of caregiver burden. Medium-high social interference (impact on social life) was associated with higher burden when adjusted for age, gender, education, and employment status. The overall results of the five-way interaction suggest that males in general had lower burden scores than females. Irrespective of their education and employment status, females had generally higher burden scores. These results add to the current body of literature, suggesting areas for further research to fill knowledge gaps, and promoting ideas for evidence-guided public health interventions that focus on caregivers.

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Burden of Care in Caregivers of Iranian patients with chronic disorders: a systematic review and meta-analysis

Introduction: Caring for patients with chronic disorders can lead to different problems for caregivers in physical, psychological, social, family, and financial domains. High levels of burden of care can make caregivers vulnerable to physical and psychological conditions and influence their quality of life. Therefore, the goal of the present study was to estimate the overall percentage of burden of care in caregivers of Iranian patients with chronic disorders. Methods: A total of 25 articles published from inception to February 2019 were reviewed. Search for articles was conducted in international (Scopus, Web of Science, and PubMed) and domestic (Scientific Information Database (SID) and MagIran) databases, using the following keywords: "Caregiver," "Burden," and "Iran," and their possible combinations. The data were analyzed using the meta-analysis method and the random effects model. All the analyses were performed using STATA, version 14. Results: The overall percentage of burden of care in caregivers of Iranian patients with chronic disorders was 53.28% (95% CI: 46.13-60.43). The highest percentage of burden of care was related to dialysis (62.75; 95% CI: 56.11-69.38), mental disorders (58.69; 95% CI: 49.70-67.69), and Alzheimer's disease (57.07; 95% CI: 46.23-67.92), respectively; and the lowest percentage of burden of care was related to diabetes (34.92; 95% CI: 18.01-51.82). Conclusions: Caregivers of Iranian patients with chronic disorders experience high levels of burden of care, especially those caring for patients undergoing dialysis, patients with mental disorders, and patients with Alzheimer's disease. Therefore, necessary measures need to be taken by Iranian health care officials to reduce burden of care in caregivers. 

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Burden in Tunisian Family Caregivers of Older Patients with Schizophrenia Spectrum and Bipolar Disorders; Associations with Depression, Anxiety, Stress, and Quality of Life

There are very little data on the burden among caregivers of older adults with severe mental diseases. We aimed to assess the perceived burden among caregivers of family members with schizophrenia spectrum and bipolar disorders. A cross-sectional study was carried out with 52 older patients with schizophrenia spectrum and bipolar disorders and their family caregivers. Caregivers were assessed with the medical outcome survey short form (SF-36), the Zarit Burden Interview (ZBI) and the Depression Anxiety and Stress scales (DASS-21). Caregivers' mental quality of life was impaired with an average mental score of 59.05. For a threshold value of 17, the level of perceived burden was considered as high for 42.3% of caregivers. After controlling for demographic variables (age and gender) and patients' health-related variables (level of dependency, comorbidities, age onset of illness, number of hospitalizations and duration of clinical remission), caregivers' levels of depression, stress, and SF-36 physical component significantly contributed to their perceived burden. Certain modifiable risk factors play an inescapable role in increasing the level of burden among caregivers of older patients with serious mental illnesses. Improving the quality of life and psychological well-being of family caregivers should be considered an integral part of treatment for serious mental illness in older adult patients.

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Burden and quality of life in caregivers of patients with amputated diabetic foot

Informal caregivers of chronically ill patients often report burden and poor quality of life. This study aimed to evaluate the impact of caring on caregivers of amputated patients with type 2 diabetes and diabetic foot. A cross‐sectional study included a convenience sample of 110 caregivers who answered: the Burden Assessment Scale, the Depression Anxiety Stress Scales, the Social Support Satisfaction Scale, the Family Assessment Device, and the Short Form Health Survey. Multiple linear hierarchical regressions were performed to identify the variables that contributed to the burden and the physical and mental quality of life. Differences in burden as well as physical and mental quality of life were found, according to several caregivers' sociodemographic characteristics. Lower social support, more distress, and caregiver's perception of the impact of caring on the family dynamics contributed to burden. Lower distress and not having a chronic illness besides diabetes explained the physical quality of life whereas exercise and lower distress explained mental quality of life. To promote quality of life in caregivers and reduce the burden associated with caregiving, interventions should focus on social support, distress, and the practice of exercise. (Portuguese)

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A brief psychometric and clinimetric evaluation of self-report burden and mental health measures completed by care partners of people with Parkinson's-related dementia

This report describes the evaluation of the psychometric and clinimetric properties of nine self-report measures completed by informal care partners of individuals with mild cognitive impairment or dementia in Parkinson's disease and dementia with Lewy bodies. One hundred thirty-six care partners completed measures on relationship satisfaction, burden, stress, mood, resilience, health, quality of life, and feelings related to care provision. Psychometric properties, such as internal consistency, convergent validity, floor and ceiling effects, completion rate and data missingness, as well as clinimetric properties, such as time to administer, ease of scoring, readability and availability of the scales, were examined. Additionally, the design of the measure development studies was assessed with the 2018 COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) Risk of Bias checklist. Participants were mostly married women (>85%) with a mean age of 69.4 years. The methodological quality of the design of all measure development studies was "inadequate." Five widely applied measures (Zarit Burden Interview, Hospital Anxiety and Depression Scale, Short Form 12 Health Survey, Relatives' Stress Scale, and EuroQoL-5D) and two less researched instruments (Brief Resilience Scale and Relationship Satisfaction Scale) had high internal consistency and completion rates, moderate to strong convergent validity, low missingness and floor effects, and excellent clinical utility ratings. Two scales (Dyadic Relationship Scale and Family Caregiving Role) received poor psychometric ratings, and their usage among informal care partners is not recommended. In conclusion, well-validated and widely used measures received strong psychometric and clinimetric ratings. Future studies are required to determine the most reliable, valid and robust caregiver-reported measures.

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Becoming a family caregiver of a patient living with cancer

Background: There is insufficient information on how the burden of caregiving is affected when the family caregiver is a health professional. Studies are needed to investigate this issue.; Aims: The purpose of this study was to reveal difficulties experienced by a nurse family caregiver offering care to a family member diagnosed with end-stage cancer and how she coped with these difficulties.; Methods: This was an autoethnographic study.; Findings: Findings were grouped under three headings: being both a researcher and a subject; effects of caregiving; and coping.; Conclusions: Offering care to a cancer patient has many physiological and psychological effects. If a family caregiver is a health professional, his/her caregiving burden can be even higher. Cultural values affect both life and coping ways of caregivers. It should be kept in mind that family caregivers need support from health professionals whatever their occupations are. Support to caregivers plays an important role in their coping.

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Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study)

Background: At the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality. Methods: Mortality follow-back postal survey. Setting: Palliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco). Participants: Informal carers (ICrs) of decedents who had received palliative care. Data: ICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG). Analysis: All costs (formal, informal) were calculated by multiplying reported hours of activities by country-specific costs for that activity. IC costs used country-specific shadow prices, e.g. average hourly wages and unit costs for nursing care. Multivariable logistic regression analysis explored the association of potential explanatory variables, including IC costs and care quality, on three outcomes: positive aspects and burdens of caregiving, and subsequent grief. Results: We received 767 completed surveys, 245 from London, 282 Dublin, 131 New York and 109 San Francisco. Most respondents were women (70%); average age was 60 years. On average, patients received 66-76 h per week from ICrs for 'being on call', 52-55 h for ICrs being with them, 19-21 h for personal care, 17-21 h for household tasks, 15-18 h for medical procedures and 7-10 h for appointments. Mean (SD) IC costs were as follows: USA $32,468 (28,578), England $36,170 (31,104) and Ireland $43,760 (36,930). IC costs accounted for 58% of total (formal plus informal) costs. Higher IC costs were associated with less grief and more positive perspectives of caregiving. Poor home care was associated with greater caregiver burden. Conclusions: Costs to informal carers are larger than those to formal care services for people in the last three months of life. If well supported ICrs can play a role in providing care, and this can be done without detriment to them, providing that they are helped. Improving community palliative care and informal carer support should be a focus for future investment.

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Care packages halved for most people with learning disabilities during Covid, report carers

Needs have increased leading to negative impact on independence, relationships and health and more pressure on carers, finds Mencap

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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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Caregiver burden and health-related quality of life among primary family caregivers of individuals with schizophrenia: a cross-sectional study

Purpose This study aimed to examine correlates of caregiver burden and health-related quality of life (HRQoL) among primary family caregivers of individuals with schizophrenia in inpatient psychiatric rehabilitation facilities. Methods A cross-sectional study was conducted with 157 Taiwanese primary family caregivers of individuals with schizophrenia residing in inpatient psychiatric facilities. Measures included socio-demographic questionnaires and clinical information, Mutuality Scale, Family Crisis-Oriented Personal Evaluation Scales, Zarit Burden Interview, and World Health Organization Quality of Life-brief version. To describe the degree of caregiver burden and domains of HRQoL, descriptive statistics were computed. Independent sample t test, one-way analysis of variance, and Pearson's correlation analysis followed by multiple regression analyses were performed to determine correlations and relationships between characteristics of patients and primary family caregivers with caregiver burden and domains of HRQoL. Results Primary family caregivers experienced mild to moderate caregiver burden and poor HRQoL. Primary family caregivers who were older and unemployed, caring for patient's severe psychiatric symptoms, and had low monthly incomes, decreased mutuality, and fewer family coping strategies were associated with greater caregiver burden and poor HRQoL. Greater mutuality and family coping strategies of reframing and seeking spiritual support were the most significant factors in improving caregiver burden and all domains of HRQoL, respectively. Conclusion Family-focused interventions for caregivers of institutionalized persons with schizophrenia that include psychological support and peer support groups are recommended to enhance mutuality and family coping strategies, reduce caregiver burden, and improve HRQoL.

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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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Caring behind closed doors: six months on. The continued impact of the coronavirus (COVID-19) pandemic on unpaid carers

There were up to 9.1 million unpaid carers across the UK before the COVID-19 pandemic, providing everything from a few hours of support a week to intensive and complex round the clock care.  The pandemic has resulted in millions of new carers – 4.5 million new to caring since the start of the pandemic, 2.8 million of whom are juggling work and care. Caring can have significant costs, and without sufficient support it can take its toll on carers’ emotional and physical health, ability to work and have a knock-on effect on their long-term finances. Carers have been hit particularly hard as a result of the COVID-19 pandemic. As this research shows many have had to make extremely difficult decisions about work and family.

Carers are providing even more care than six months ago; Needs have increased; Fewer breaks and no breaks; Worse health and wellbeing; Worried about winter; Exhausted and worn out; Struggling financially; Work – a mixed picture; Digital differences; Some positives during caring 

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Resilience and burden in caregivers of older adults: moderating and mediating effects of perceived social support

BACKGROUND: The burden of caring for an older adult can be a form of stress and influence caregivers' daily lives and health. Previous studies have reported that resilience and social support play an important role in reducing physical and psychological burden in caregivers. Thus, the present study aimed to examine whether perceived social support served as a possible protective factor of burden among caregivers of older adults in Singapore using moderation and mediation effects' models. METHODS: We conducted a cross-sectional study with 285 caregivers providing care to older adults aged 60 years and above who were diagnosed with physical and/or mental illness in Singapore. The Connor-Davidson Resilience Scale (CD-RISC) was used to measure resilience and burden was measured by the Zarit Burden Interview (ZBI). The Multidimensional Scale of Perceived Social Support (MSPSS) was used to measure perceived social support. Hayes' PROCESS macro was used to test moderation and mediation effects of perceived social support in the relationship between resilience and burden after controlling for sociodemographic variables. Indirect effects were tested using bootstrapped confidence intervals (CI). RESULTS: The mean scores observed were CD-RISC: 70.8/100 (SD = 15.1), MSPSS: 62.2/84 (SD = 12.2), and ZBI: 23.2/88 (SD = 16.0) respectively. While perceived social support served as a full mediator between resilience and caregiver burden (β = - 0.14, 95% CI -0.224 to - 0.072, p < 0.05), it did not show a significant moderating effect. CONCLUSIONS: Perceived social support mediates the association between resilience and caregiver burden among caregivers of older adults in Singapore. It is crucial for healthcare professionals, particularly those who interact and deliver services to assist caregivers, to promote and identify supportive family and friends' network that may help to address caregiver burden.

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A comparison of psychometric properties of two common measures of caregiving burden: The family burden interview schedule (FBIS-24) and the Zarit caregiver burden interview (ZBI-22)

Purpose: The Family Burden Interview Schedule (FBIS-24) and the Zarit Caregiver Burden Interview (ZBI-22) are among the most widely used measures for assessing caregiving burden, but their psychometric performances have not been compared in the same study of caregivers of people living with schizophrenia (PLS). This is important because the measures assess overlapping constructs-the FBIS-24 assesses objective burden (e.g., completion of manual tasks) and the ZBI-22 assesses subjective burden (e.g., perceived distress, stigma). This study seeks to fill this gap by comparing the reliability and validity of the FBIS-24 and the ZBI-22 in a Chinese community sample of caregivers of PLS. Methods: A Cross-sectional stud was conducted in a community-based mental health service program in Central South part of China. A total of 327 primary family caregivers of PLS completed face-to-face interviews of the FBIS-24, the ZBI-22, the Patient Health Questionnaire (PHQ-9), the Generalized Anxiety Disorder Scale (GAD-7), and the Family Adaptation, Partnership, Growth, Affection and Resolve Index scale (APGAR), and PLS were assessed using the Global Assessment of Function scale (GAF). Results: Our findings show that both the FBIS-24 and ZBI-22 have comparable psychometric performance in terms of the internal consistency, convergent validity and known group's validity. Conclusion: Both the FBIS-24 and the ZBI-22 are psychometrically sound measures of caregiving burden but the choice of which measure to use will depend on the research question.

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A cross-sectional study on spouse and parent differences in caregiving experiences of people living with schizophrenia in rural China

Background Conflicting evidence exists on whether parent or spouse caregivers experience better outcomes when caring for family members with schizophrenia. The current study aims to examine relative caregiving experiences and impacts of spouse and parent caregivers for people living with schizophrenia (PLS) in China. Methods A cross-sectional study was conducted in a sample of 264 community-dwelling primary family caregivers of PLS. Face-to-face interviews were conducted to collect information on family caregiving activities; negative caregiving impacts including objective and subjective burden, and caregiver psychological distress such as depression and anxiety; positive caregiving impacts including caregiving rewarding feelings, and family functioning for spouse and parent caregivers. Results Both types of caregivers report engaging in similar caregiving activities and report comparable levels of objective burden. However, parent caregivers report significantly higher subjective burden than spouse caregivers (b=7.94, 95%CI:2.08, 13.80, P<0.01), which is also reflected in significantly higher depression (b=3.88, 95%CI:1.35, 6.41, P<0.01) and anxiety (b=2.53, 95%CI: 0.22, 4.84, P<0.05), and lower family functioning (b=-1.71, 95%CI: -2.73, -0.49, P<0.01). Despite these differences, both groups of caregivers report comparable rewarding feelings about caregiving. Conclusions Our findings have implications for family caregivers globally, but especially for countries that adhere to Confucian cultural values and provide guidance for future family intervention programs. Such programs may do well to incorporate cultural values and beliefs in understanding caregiving and kinship family dynamics so as to support family caregivers, and in particular, the specific vulnerabilities of parent caregivers.

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Insomnia and caregiver burden in chronic pain patients: A cross-sectional clinical study

Insomnia is a major comorbid symptom of chronic pain and is likely to affect caregiver burden. This cross-sectional study investigated the association between insomnia in chronic pain patients and family caregiver burden. Participants were 60 patients with chronic pain of >= 3 months duration. Demographic and clinical information were collected using the Athens Insomnia Scale (AIS), the Pain Disability Assessment Scale (PDAS), the Hospital Anxiety and Depression Scale (HADS), and a pain intensity numerical rating scale (NRS). Family members who accompanied chronic pain patients to hospital completed the Zarit Burden Interview (ZBI). Univariate regression analysis and multiple regression analysis were conducted to clarify the associations between ZBI scores and total/subscale AIS scores. Covariates were age; sex; pain duration; and scores on the PDAS, HADS anxiety subscale, HADS depression subscale, and NRS. Insomnia was independently associated with ZBI scores [beta: 0.27, 95% confidence interval (CI): 0.07-0.52, p = 0.001]. Scores on the AIS subscale of physical and mental functioning during the day were significantly associated with ZBI scores (beta: 0.32, 95% CI: 0.05-0.59, p = 0.007). In conclusion, the findings suggest that in chronic pain patients, comorbid insomnia and physical and mental daytime functioning is associated with family caregiver burden independently of pain duration, pain-related disability, and pain intensity.

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Sex and gender differences in caregiving burden experienced by family caregivers of persons with dementia: A systematic review

Objectives Much is known about the demands of caregiving for persons with dementia (PWD) and its effects on family caregivers, however sex and gender aspects have received less attention. We synthesized the evidence on sex and gender distinctions in: (1) the caregiving burden and (2) the impact of caregiving on the physical and mental health of family caregivers of PWD. Design Systematic review. Data sources Medline, Embase, PsycINFO and Cumulative Index to Nursing and Allied Health Literature between January 2007 and October 2019 were searched. Eligibility criteria for selecting studies Included studies met the following criteria: (1) examine experiences and/or impacts of caregiving among family caregivers of individuals with any form of dementia; (2) report sex and/ or gender distribution of study population and/or report results stratified by sex and/or gender, and (3) include both male and female family caregivers. Data extraction and synthesis Two independent reviewers extracted the data and assessed risk of bias using the Critical Appraisal Skills Program checklist and National Institutes of Health Quality Assessment Tool for Observational Cohort and Cross-sectional Studies. Data were synthesized using a narrative synthesis approach. Results A total of 22 studies were included. Caregiving burden was measured using various methods. A majority of studies reported higher burden among females. All studies that did not report a sex and gender difference in caregiving burden accounted for confounders. Findings on sex and gender differences on physical and mental health conditions were inconsistent with most studies failing to account for confounders in their analyses. Conclusions Current evidence on sex and gender differences in caregiving burden, mental and physical health is limited. Findings suggest presence of sex and gender differences in caregiving burden. Given the variety of mental and physical health constructs that were examined, further research is required to substantiate the evidence. 

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Can drawings help assessing dementia caregivers' burden? A preliminary study

The use of quantitative self-report methods for assessing the stress associated with dementia caregiving, especially among minority groups, has been lately criticized. The aim of this study was to examine whether Human Figures Drawings might provide a tool for assessing caregivers' burden. Sixty Israeli Arabs – 30 family caregivers of a person with dementia and 30 gender and age-matched non-caregivers – were asked to draw a caregiver of an elderly person with dementia and a caregiver of an elderly person with a physical disability. While no differences were found between the drawings of caregivers and non-caregivers, statistically significant differences were found between all the characteristics of the drawings depicting a caregiver of an elderly person with dementia and a caregiver of an elderly person with a physical disability, as drawn by caregivers. Several of the drawings' characteristics were significantly associated with caregiver burden. By introducing a nonverbal form of expression, Human Figures Drawings might add utility to the assessment of dementia caregivers' burden. 

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Spirituality alleviates the burden on family members caring for patients receiving palliative care exclusively

Background: Spirituality can give meaning to life, providing support and guidance in complex situations. Despite its importance in palliative care, the role of spirituality for family caregivers of patients under exclusive palliative care has not received enough attention in the literature. We aimed to address the correlation between spirituality and the emotional burden of family members of patients under exclusive palliative care. Methods: This transversal study was conducted in a tertiary private teaching hospital, in Saõ Paulo, Brazil. The study comprised family members of patients receiving palliative care exclusively. Only one caregiver who cared for the patient for at least 2 months was invited to participate. Family members answered the following questionnaires: WHOQOL spirituality, religiousness and personal beliefs (SRPB), Zarit Burden Interview (ZBI) and Self-Reporting Questionnaire (SRQ-20). They were excluded if patients were residing in a Long Stay Institution. Continuous variables were expressed by median and quartiles and analyzed with the Kruskal-Wallis test with Muller-Dunn post-test adjusted by Bonferroni or with the Mann-Whitney test for two groups. We used multivariable linear regression to identify independent predictors of caregiver burden. Results: A total of 178 family members were interviewed in a median of 8 [4-13.25] days after patient admission. Almost 40% of families presented high score of burden. Faith and Meaning in Life were the facets that scored the highest, with a median of 4.50 [4.00-5.00] for both facets. There was an inverse correlation between Zarit score and all of the WHOQOL-SRPB facets, indicating that the lower the spirituality, the greater the emotional burden. Inner peace was the strongest protective factor associated with burden. Conclusions: Psycho-socio-spiritual interaction can improve the coping ability of family caregivers of patients under exclusive palliative care, addressing a critical gap in the provision of holistic palliative care services. 

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Relational satisfaction of spousal/partner informal caregivers of people with multiple sclerosis: Relational commitment, caregiving burden, and prorelational behavioral tendencies

Background: Relational satisfaction of spousal/partner informal caregivers of people with multiple sclerosis (MS) is important for continued care and support. Previous studies have examined relational satisfaction in terms of well-being and quality of life of informal caregivers. Based on the Rusbult investment model, we directly studied the relational satisfaction of spousal/partner informal caregivers of individuals with MS. In doing so, we investigated possible effects that commitment to relationship, caregiving burden, and prorelational behavioral tendencies might have on relational satisfaction. Methods: Nine hundred nine adult spousal/partner informal caregivers of people with MS completed measures of relational satisfaction (Kansas Marital Satisfaction Scale), commitment to relationship (15-item commitment measure), caregiving burden (Zarit Burden Interview), and prorelational behavioral tendencies (adapted Prosocial Tendencies Measure). Participants also provided demographic information (age, sex, duration and type of relationship [spouse, partner]). Results: Structural equation modeling highlighted commitment to the relationship as the strongest predictor of relational satisfaction. Caregiving burden was found to affect relational satisfaction directly and through commitment to relationship. Prorelational behavioral tendencies were found to affect less relational satisfaction. Conclusions: Commitment to relationship, namely, intent to persist, had the highest positive effect on satisfaction. Caregiving burden was found to have a two-way negative relationship to commitment to relationship. These findings suggest that specialists should enhance the intent-to-persist aspect of commitment because it seems to have an alleviating effect regarding caregiving burden (which itself negatively affects relational satisfaction). 

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A causal model of caregiving burden among dementia caregivers

In this study, a cross-sectional, predictive correlation design was used to identify and test a causal relationship between behavior disturbances, coping, family conflict, self-esteem and social support to caregiver burden among dementia caregivers. A total of 450 caregivers of dementia aged over 18 years were recruited from 4 hospitals in northern Thailand based on selected criteria. Demographic Questionnaire, Behavioral Pathology in Alzheimer’s Disease Rating Scale (BEHAVE-AD, The Family Conflict Scale, The Zarit Burden Interview Scale, The Perceived Social Support Questionnaire, The Brief COPE and The Rosenberg Self-Esteem with acceptable reliability coefficients were used to collect data. Data were analyzed using descriptive statistics, Pearson’s Product-Moment Correlation and path analysis by structural equation modeling. Results showed that the modified model fitted with the data and explained 58 % of the variance in caregiving burden among dementia caregivers. Coping and family conflict had a positive direct effect on caregiving burden (p < 0.001), whereas self-esteem and social support had a direct negative effect on caregiving burden (p < 0.001). Behavior disturbance had a positive indirect effect caregiving burden (p < 0.001) via family conflict. Coping had a positive indirect effect on caregiving burden (p < 0.001) via behavior disturbance and family conflict. Social support had a negative indirect effect on caregiving burden (p < 0.001) via family conflict and self-esteem. The results of this study could be used as a guideline for psychiatric nurses in planning an appropriate intervention program to reduce burden of caregivers of dementia patients in Thailand. 

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Support, interventions and outcomes for families/carers of people with borderline personality disorder: A systematic review

It is clear from existent literature that families and carers of relatives and friends with borderline personality disorder (BPD) experience high levels of burden. Whilst family interventions are considered vital to improving the outcomes of those with a range of mental health difficulties, there has been limited development of direct interventions for carers of people with BPD, despite a high level of need. This systematic review aimed to appraise and synthesize the existing research evidence for interventions for carers of people with BPD. Ten studies were included that were directly related to six interventions for families and carers of people with personality disorder. The findings of these studies, whilst limited, do provide some initial evidence that interventions for carers may lead to significant outcomes for the participants, particularly in improving carer well-being and reducing carer burden. 

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

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

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Caregivers’ burdens and barriers in accessing healthcare services for dependent elders in Thailand

Background: Elders report poor health status and a greater need for healthcare services; however, in Thailand there are barriers in accessing healthcare services for these individuals. Objective: To study the health status of dependent elders in Thailand, the barriers in accessing health services for them, the impact resulting from these barriers, and the impact on caregivers when taking care of dependent elders. Materials and Methods: The study was conducted in 4 provinces in Thailand: Nonthaburi, Pathumthani, Ayutthaya, and Lopburi. Data were collected from 243 home-bound and bed-bound elders and 124 caregivers. The research tools both qualitative and quantitative parts were used to interview dependent elders and their primary caregivers. Results: The study found that 96.5% of the dependent elders had chronic disease comorbidity with non-communicable. The barriers in accessing health services included long waits for healthcare services, transportation expenses to these services, medical expenses, no mobility support or body assist tools, no accessibility to information, unawareness of their rights in terms of medical treatment, and caregiver issues. These barriers affected the dependent elders regarding their physical and mental health and financial issues. Moreover, taking care of dependent elders had the impact on caregivers in terms of physical and mental health, family relationships, social participation, and financial issues. Conclusion: There are still barriers in accessing health services for dependent elders. Furthermore, taking care of them is caregivers’ burden. Therefore, caregivers should be supported. 

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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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Associations of knowledge of Alzheimer’s disease and memory loss and employment status with burden in African American and Caucasian family caregivers

Caring for an individual living with Alzheimer’s disease and other forms of dementia is especially challenging and impacts every aspect of the lives of the family caregivers. Family caregiving is defined as informal, unpaid care provided by family or friends to people with a chronic illness or disability. Caregiver burden, often experienced by a caregiver for a cognitively impaired family member, is multifaceted involving physical, psychological, social, and emotional problems. To date, little has been done to examine the relationship between the knowledge of Alzheimer’s disease and memory loss and caregiver burden. To fill this gap, a cross sectional, correlational design was employed to collect data from a convenience sample (N = 104) of African American and Caucasian dementia family caregivers. For this study, caregivers ranged from 25 to 89 years of age with African American caregivers possessing significantly lower levels of knowledge about Alzheimer’s disease and other dementias compared to Caucasian caregivers, p <.001. There were 44 caregivers who scored 41 or greater on the Caregiver Burden Inventory corresponding to moderate to severe and higher levels of burden. Results of hierarchical multiple regression models indicated that higher levels Alzheimer’s disease knowledge was significantly associated with lower caregiver burden for all caregivers, B = −0.294, p <.01. Additionally, employment status was significantly associated with caregiver burden. This study highlights the benefits of including disease specific knowledge within educational components of dementia related interventions and programs involving families.

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Behavioural disturbances in patients with frontotemporal lobe degeneration focusing on caregiver burden at home and in nursing homes

Aim and objective To explore the challenges faced by family caregivers of people with frontotemporal dementia and other forms of dementia affecting the frontal and temporal lobes causing behavioural disturbances through a qualitative approach with in‐depth interviews. Background Studies of different forms of dementia involving degeneration of the frontal and temporal lobes have mainly focused on the neurophysiology and physiology of the disease and on caregivers’ health. Few studies have described the challenges and burdens connected with everyday life and in relation to suitable nursing home placement that are faced by family caregivers. Method and design This study used a descriptive and explorative design. Eleven semi‐structured interviews with family caregivers of patients from special units in four nursing homes were conducted in 2014. Data were analysed based on Kvale and Brinkmann's three contexts of interpretation: self‐understanding, common sense and theoretical understanding. Checklist for qualitative studies: Standards for Reporting Qualitative Research (SRQR) http://www.equator-network.org/reporting-guidelines/srqr/ Results Two central themes were derived from the data: changes in behaviour and personality were perceived as incomprehensible, frightening and increasingly difficult to manage. Family caregivers experienced challenges in finding suitable care facilities when they were not able to continue providing home care. Due to behavioural disturbances and lack of relevant competencies among health personnel, family members were often moved between nursing homes. Conclusion Pronounced personality and behavioural disturbances such as tactlessness and aggression in a family member with dementia are experienced by caregivers as stressful and burdensome and may lead to feelings of shame and guilt. A lack of suitable care facilities adds to the stress and difficulties of the families and entails an additional and unresolved burden. Relevance to Clinical Practice The study reveals a need for more knowledge among those organising health services as well as healthcare professional dealing with this patient category to ease the burden on next of kin.

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Action Research as a Method to Find Solutions for the Burden of Caregiving at Hospital Discharge

The role played by family caregivers in delivering long-term care is crucial: they enhance the quality of care perceived by the patients and support the shift to out-of-hospital care. However, taking care of a relative entails a huge burden that usually begins with the patient’s hospital discharge and may mean that caregivers become patients in need of care as well. Owing to socio-demographic trends, informal caregiving is the most important source of care in community settings; hence targeting the caregivers’ burden properly is crucial. This study explores how action research (AR) can be used to develop new hospital practices to manage the burden borne by family caregivers when patients are discharged from hospital. The 7-month-long action research reported in this paper consisted of three stages (burden identification, burden sharing, and burden management) and it was conducted in a teaching hospital in Rome (Italy). Both quantitative (surveys) and qualitative (focus groups and simulation sessions) techniques were used to engage participants. The AR demonstrates that there is a feasible way in which hospital managers can address proactively the caregivers’ needs in the hospital discharge process, to the advantage of the patients and the entire community.

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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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Development of a mobile app for family members of Veterans with PTSD: identifying needs and modifiable factors associated with burden, depression, and anxiety

Family members of Veterans with posttraumatic stress disorder (PTSD) face high levels of burden that are poorly addressed by existing mental health services. Widely distributed mobile interventions could play a role in addressing these unmet needs. The purpose of this study was to characterize caregiver burden in those seeking a mobile app for self-management of stress symptoms and to develop a model to guide mobile interventions for family members. Those living with a Veteran with PTSD (n = 212) and interested in using a mobile intervention agreed to participate. The majority reported moderate-to-severe levels of depression (60%) and/or caregiver burden (59%). Relationship quality, communication, and self-efficacy for caregiving were the strongest predictors of negative outcomes (p’s <.001), and qualitative results identified several additional unmet needs (e.g. relationship concerns, safety concerns). This study identifies potential mechanisms by which a mobile app could improve family functioning in the context of PTSD.

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The Burden of Mental Illness and Mental Distress on Family Members

BACKGROUND: The Organisation for Economic Cooperation and Development reports that one in every two people experiences a mental illness in their lifetime, and developed policy guidelines to address the impact of mental health-related issues on employment and health. The results of this policy initiative have been reported in many member countries but no survey findings are available yet for Japan. Previous studies in Japan focused on the social costs of mental illness, but little empirical evidence exists on burdens created by mental illness in individual households. AIMS: This study investigated the effects of mental illness and mental distress on family members' employment and sleep time. Employed men and women family members and unemployed women family members who wanted to work were included in the study. METHODS: Japanese survey data from the 2013 Comprehensive Survey of Living Conditions were analyzed to identify the above-mentioned effects. A propensity score matching method was used to create a valid comparison group for family members of patients with mental illness and distress. RESULTS: For depression, family member average weekly work hours decreased by a range of 1.06 (p%lt;0.01) to 1.18 (p<0.01) for men, and 0.53 (p<0.1) to 1.06 (p<0.05) for women. For dementia (termed "major neurocognitive disorder" in the DSM-5), there were no statistically significant effects on work hours in men, but the work hours of employed women increased, ranging from 1.15 (p<0.05) to 1.25 (p<0.01). Mental illness in a family member also significantly influenced future employment prospects of unemployed women. In family members of patients with dementia, sleep time decreased by a range of 3.6 minutes (p<0.05) to 4.8 minutes (p<0.01) per night for men and 12 minutes (p<0.01) per night for women. DISCUSSION AND LIMITATIONS: These findings can add to the existing evidence on the effects of mental illness and distress on family members' work hours and sleep time in Japan, which are consistent with research from other countries such as Germany, the UK, and the US. This study has two limitations. First, the magnitude of the effect of mental illness is limited with respect to the illness category in our study, since the severity of the condition and the impact on actual daily life may vary across categories or differ even within the same category. Second, measurement error might exist in the self-reported mental illness measures. POLICY IMPLICATIONS: First, cooperation and mutual support between employers and the community are necessary to support working family caregivers by allowing them to adjust work schedules to accommodate caregiving responsibilities. Second, social institutional policies are needed that reduce the burden of informal caregiving for family members with mental illness and increase access to long-term care for those in need. Third, since mental illness and distress have been shown to affect family members' sleep schedules, health care programs must focus on promoting caregivers' general health. IMPLICATIONS FOR FUTURE RESEARCH: To further address the burden of mental illness and distress on family members, future research should examine illness severity as measured by Activities of Daily Living.

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“I was Confused About How to Take Care of Mom Because this Disease is Different Everyday”: Vietnamese American Caregivers’ Understanding of Alzheimer’s Disease

Family members provide the majority of caregiving to individuals living with Alzheimer’s disease (AD) and related dementias. Asian American families are disproportionately impacted by the burden of caregiving due to limited knowledge about the disease in this community. This study explored how Vietnamese American caregivers understand AD and provide care to family members with AD. Twenty caregivers who have provided care to a family member with AD participated in a semi-structured qualitative interview. Data were analyzed using thematic analysis. Several themes were identified in the caregivers’ understanding of AD: (a) “Now I know:” the disruptions, shocks and surprises leading up to the initial diagnosis; (b) The frustrations of managing family members’ cognitive impairments; (c)“Going with the flow:” challenges in managing personality and behavioral changes; (d) The exhaustion of around-the-clock caregiving; (e)“Taking it day by day” in the face of progressively worsening symptoms. Underlining the participants’ descriptions of AD was a shared understanding of the progressively worsening, complex and unpredictable nature of the disease that makes it challenging for family caregivers on a daily basis. Findings provide important implications for healthcare workers’ outreach to Vietnamese American families to ease the caregiving experience through culturally-responsive education, thereby enhancing the families’ ability to recognize the early symptoms and seek appropriate help.

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The influence of swallowing impairments as an independent risk factor for burden among caregivers of aging parents: A cross-sectional study

Informal caregivers can experience high levels of burden, negatively impacting both the caregiver and care recipient. The presence of dysphagia (swallowing impairments) in care recipients is suggested to contribute to increased caregiver burden. The purpose of this study was to describe the type and severity of caregiver burden experienced by adults caring for community-dwelling older parents reporting symptoms of dysphagia. Using surveys from the National Health and Aging Trends Study and the National Study of Caregiving, data from 895 adults providing care for an aging parent were analyzed. Binary logistic regression analyses revealed that swallowing difficulties reported by a parent is a significant independent predictor of increased physical and emotional burden in their caregivers. Forty percent or more of these caregivers reported moderate to severe physical and/or emotional burden. Suggestions are provided to identify dysphagia early on and to provide supports for caregivers.

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The Lived Experiences of Family Caregivers of Persons Dying in Home Hospice: Support, Advocacy, and Information Urgently Needed

Death in America is changing from hospital to home, which demands complex skills by family caregivers. However, information from family members about the challenges of providing home hospice care until death is scant. To understand the challenges a family caregiver confronts when he/she decides to deliver hospice care and during the actual delivery of the hospice care, we used descriptive phenomenology methods to document the experience of 18 family caregivers as they delivered home hospice care. We learned the decision to begin home hospice was made by a physician, followed frequently by family resistance and refusal to assist. Family caregiver burden is enormous, compounded by fatigue, sleeplessness, and confusion on issues such as morphine dosage and administration. The stages and process of dying, such as transition, baffled family caregivers. All family caregivers agree financial and emotion support, empathic advocacy, and affirmation of their worth are needed to sustain them to care for the dying. The peacefulness following offering a home death comes at a high price to family caregivers. Evidence is needed from a randomized controlled trial as to effectiveness of advocacy support for family caregivers to increase their resiliency and higher probability of a good death for the dying.

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Unmet needs of family caregivers of hospitalized older adults preparing for discharge home

Objectives: To describe unmet needs of caregivers of hospitalized older adults during the transition from hospital back home, and identify subgroups with different needs. Methods: Patients and family caregivers were recruited from an acute care hospital in Montreal, Canada. Measures included Instrumental Activities of Daily Living (IADL), Hospital Anxiety and Depression Scale (HADS), Zarit burden scale, and Family Inventory of Needs. Dimensions of unmet needs were explored with principal component analysis; regression tree models were used to identify subgroups with different unmet needs. Results: A total of 146 patient-caregiver dyads were recruited. Three categories of caregiver unmet needs were identified: patient medical information; role clarity and support; and reassurance. Caregiver subgroups with highest unmet needs were those with high burden of care plus depressive symptoms (n = 46) and those caring for patients with low IADL scores (n = 10). Discussion: Caregivers with high burden and depression are those with the greatest unmet needs during the care transition.

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The social and economic burden on family caregivers for older adults in the Czech Republic

Background: In this paper, we analyse the economic burden of elder care in the Czech Republic by assessing how family members of senior citizens engage in caregiving. To do this, we examined the time and cost associated with caregiving as a function of age, gender, and income of the caregiver. Methods: A questionnaire comprising 17 items was used to gather data from 155 informal caregivers whose seniors are affiliated with 200 registered home care agencies. Spearman rank correlation was adopted to analyse how caregivers' income, age and gender influences the costs accrued and time spent in caring for elders. The expenses are divided into direct and indirect. Publicly available sources are used to establish expenses on treatment and medication, which cannot be determined by the questionnaire survey. Results: Results show that around-the-clock care is the most common. Spouses of care recipients make up the highest number of caregivers, and women represent the largest portion of this group. Additionally, the more the time spent caring for an elder, the higher the cost associated with such care. The total annual burden of informal caregivers is determined by the sum of annual average indirect costs, amounting to € 36,888, and annual direct costs, amounting to € 2775, resulting in a total of € 39,663 per year. Conclusion: Czech social policymakers should begin to consider better packages for caregivers in the form of incentives and other monetary benefits to improve living standards and care for ageing seniors. 

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Caregiver Burden in Multiple Sclerosis: Recent Trends and Future Directions

Purpose of Review: In spite of recent advances in treatment, many people with multiple sclerosis (MS) require ongoing care and support. Informal caregivers can experience burden as a result of their role, with possible implications for quality of life (QOL). We review recent research examining MS caregiver experience to (1) understand current risk factors for caregiver burden and (2) identify possible strategies for increasing carer well-being. Recent Findings: MS caregiver experience is highly variable and can be predicted by a variety of care recipient, caregiver and contextual factors. Burden is not the only characteristic associated with care, with positive consequences also reported. Emerging research suggests a number of ways in which carers can be better supported. Summary: Identifying and meeting the needs of MS caregivers offers the best way of delivering tailored support. Future research should focus on the development of psychosocial supports, while acknowledging the needs of those caring for different MS patient populations.

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Cost-Effectiveness and Effects of a Home-Based Exercise Intervention for Female Caregivers of Relatives with Dementia: Study Protocol for a Randomized Controlled Trial

Previous research has proposed a range of support interventions to mitigate the adverse impact of caregiving on the daily life of caregivers of relatives with dementia. However, the effectiveness of these interventions shows a high variability. Informal caregivers usually lack the time and/or live too far from conventional facilities to do physical exercise, especially those who live in rural areas. Thus, home-based interventions may be more efficacious due to their greater convenience for this population. The present work proposes and describes a study protocol for a randomized control trial that will analyze the efficacy and cost-effectiveness of a home-based, structured individual physical exercise intervention to improve the health-related quality of life and the mental health of female informal caregivers of relatives with dementia. The nine-month-long intervention will comprise participation in two supervised physical exercise sessions per week at the caregiver's home. The proposed study outcomes will be: (1) feasibility of and adherence to the home-based provision of the intervention; (2) improvement in physical fitness and quality of life; and (3) reduction in subjective burden, psychological symptomatology and depression. Analyses will also be performed to determine the cost-effectiveness after the intervention. In conclusion, this intervention might thus represent a tailored and feasible strategy to help caregivers cope with the physical and psychological stress resulting from caregiving-related responsibilities, and it could represent a novel cost-effective support home-based intervention for caregivers.

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

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

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Factors related to the burden of family caregivers of elderly patients with spinal Tumours in Northwest China

Background Family caregivers of elderly patients with spinal tumours experience considerable pain and burden during the care process. This study aims to investigate the factors associated with caregiver burden in family caregivers of elderly patients with spinal tumours. Methods A total of 220 elderly patients with spinal tumours (age >= 65 years) hospitalized at the spine centre of our hospital from January 2015 to December 2017 and their family caregivers were recruited for this cross-sectional study. All participants completed a sociodemographic questionnaire. Caregiver burden, social support and self-efficacy were assessed by the Chinese version of the Zarit Burden Interview (ZBI), the Social Support Rating Scale (SSRS) and the General Self-Efficacy Scale (GSE), respectively. The factors related to caregiver burden were analysed by multivariate analysis. P < 0.05 was considered statistically significant. Results The 216 elderly patients with spinal tumours were 71.59 +/- 8.49 years old, and their caregivers were 70.46 +/- 9.13 years old. A total of 170 patients were cared for by their spouses, who accounted for 78.7% of all caregivers. The ZBI score for the family caregivers was 35.5 +/- 7.5, and most caregivers (84.5%) reported a moderate or heavy burden. The factors related to caregiver burden included patient paralysis, the primary cancer site, chemotherapy and/or radiation, cognitive dysfunction, functional status, monthly income, pain score, caregivers' SSRS score, and GSE score. Conclusions Most family caregivers of elderly patients with spinal tumours have a considerable caregiver burden. Interventions based on social support and self-efficacy can help reduce caregiver burden.

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Caregiving burden and sleep quality amongst family caregivers of Chinese male patients with advanced cancer: A cross-sectional study

Purpose: To examine the level of caregiving burden and sleep quality as well as their interrelationship amongst family caregivers of Chinese male patients with advanced cancer. Method: A cross-sectional study was conducted in Hong Kong. The Caregiver Reaction Assessment (CRA) and the Pittsburgh Sleep Quality Index (PSQI) were used to measure caregiving burden and sleep quality of the family caregivers. Results: A total of 96 family caregivers were recruited. Disrupted schedule (3.8; SD = 0.8) was rated as the most affected consequence of caregiving burden. Around 78.1% of the caregivers suffered from sleep problems. Hierarchical multiple regression revealed that health problems due to caregiving burden was independently associated with poor sleep quality after controlling for socio-demographic characteristics of both patients and caregivers (regression coefficient, B = 2.09, P = 0.012). Conclusions: Caregiving burden amongst family caregivers of male patients with advanced cancer was remarkably high and associated with poor sleep quality. Strategies aiming to alleviate caregiving burden of caregivers may help break this vicious cycle to enhance the sleep quality of caregivers. Results also underscore the need to assess and develop intervention to relieve caregiving burden for family caregivers of cancer patients. 

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Comparing perspectives of family caregivers and healthcare professionals regarding caregiver burden in dementia care: results of a mixed methods study in a rural setting

BACKGROUND: Persons with dementia (PwD) need support to remain in their own homes as long as possible. Family caregivers, homecare nurses and general practitioners (GPs) play an important role in providing this support, particularly in rural settings. Assessing caregiver burden is important to prevent adverse health effects among this population. This study analysed perceived burden and needs of family caregivers of PwD in rural areas from the perspectives of healthcare professionals and family caregivers. METHODS: This was a sequential explanatory mixed methods study that used both questionnaires and semi-structured interviews. Questionnaires measuring caregiver burden, quality of life and nursing needs were distributed to the caregivers; health professionals received questionnaires with adjusted items for each group. Additionally, in-depth qualitative interviews were carried out with eight family caregivers. RESULTS: The cross-sectional survey population included GPs (n = 50), homecare nurses (n = 140) and family caregivers (n = 113). Healthcare professionals similarly assessed the psychosocial burden and stress caused by behavioural disturbances as most relevant. Psychological stress, social burden and disruptive behaviour (in that order) were regarded as the most important factors from the caregivers' perspective. It was found that 31% of caregivers reported permanent or frequent caregiver overload. Eight themes related to caregiver burden emerged from the subsequent interviews with caregivers. CONCLUSIONS: Professional support at home on an hourly basis was found to be highly relevant to prevent social isolation and compensate for lack of leisure among caregivers of PwD. Improvement of interprofessional dementia-related education is needed to ensure high-quality primary care. 

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

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

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Caregivers of Patients With Brain Metastases: A Description of Caregiving Responsibilities and Psychosocial Well-being

BACKGROUND: There are increasing numbers of cancer patients with brain metastases, and there is a high potential for caregiving burden. Little work has explored caregiving responsibilities and psychosocial well-being in informal family caregivers (FCGs) of cancer patients with brain metastases. This study aimed to address this gap in the literature. METHODS: Data were drawn from baseline pilot study data. Caregivers completed demographic information and provided a self-report of their caring responsibilities and psychosocial well-being via questionnaire. RESULTS: Participants were 21 FCGs of patients with brain metastases. Many caregivers are devoting extensive time to providing care; there was high variability in the number and types of caregiving activities reported. Although many caregivers report feeling well supported, other aspects of psychosocial well-being were less robust, including anxiety, depression, burden, and coping self-efficacy. CONCLUSION: Although FCGs reported mitigating factors such as social support, they still experience significant distress. Findings support previous work suggesting that neuro-oncology caregiving is burdensome, with adverse effects on health and well-being. Foundational work, such as this, will set the stage to identify areas for future intervention.

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Caregiver strain on informal caregivers when providing care for older patients undergoing major abdominal surgery: A longitudinal prospective cohort study

Background: Health-care systems nowadays rely on complementary patient care by informal caregivers. The need for, and burden on, informal caregivers will likely increase in the upcoming years. This study aimed to examine the burden on caregivers when providing care for elderly patients undergoing major abdominal surgery. Methods: A single-centre longitudinal cohort study was conducted between November 2015 and June 2018 in the Amphia hospital in Breda, the Netherlands. Patients aged 70+ undergoing elective surgery for colorectal carcinoma (CRC) or an abdominal aortic aneurysm (AAA) were included in this study. Informal caregiver burden was assessed and compared over time using the Caregiver Strain Index (CSI) at the outpatient clinic visit, at discharge, 2 weeks post-discharge and after 6 and 12 months. The effects of patient- and caregiver-related factors on the experienced caregiver strain were examined. Results: CSI scores of 248 caregivers were significantly increased at discharge (3.5 vs 2.6; p < 0.001) and 2 weeks post-discharge (3.3 vs 2.6; p < 0.001). After 12 months, scores dropped below baseline scores (1.8 vs 2.6; p = 0.012). The highest strain was observed 2 weeks post-discharge for AAA patients and at discharge for CRC patients. Older age, physical or cognitive impairment and burden of comorbidity were associated with an increased caregiver strain at baseline. Type of surgery was independently associated with the change in mean CSI scores over time; a bigger change in caregiver burden is observed after open surgery. Conclusion: In the early postoperative period, perceived caregiver strain was significantly increased. Psychological support for caregivers may be advisable, with timing of this support depending on diagnosis and patient-related factors. Trial registration: This manuscript was retrospectively registered on 05-04-2016 in the Netherlands Trial Register (NTR5932). http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=5932. 

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Relationship Between Caregiver Burden and Family Functioning in Family Caregivers of Older Adults With Heart Failure

Caregivers of individuals with heart failure are at high risk for diminished quality of life because of the energy involved in providing necessary care. Caring for someone with chronic heart failure can affect caregivers' physical, psychological, and social health, collectively referred to as the burden of care, and may also affect family functioning. The current cross-sectional study aimed to investigate the relationship between caregiver burden and family functioning in caregivers of older adults with heart failure in southeastern Iran using the Zarit Burden Inventory and the Family Assessment Device based on the McMaster Model of Family Functioning. The Pearson correlation coefficient, independent t test, and analysis of variance were used to determine relationships among variables. Results showed a significant correlation between burden of care and total score of family functioning. Therefore, it is necessary to take measures to reduce burden of care for caregivers through education and support programs and to improve their family functioning and quality of life. 

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Association between exercise training in haemodialysis patients and burden of their family caregivers: A cross-sectional study

Aim: Considering that exercise programmes are related with a range of benefits for end-stage renal disease patients, we evaluated the association between haemodialysis (HD) patients’ involvement in intradialytic exercise training with the burden of their family caregivers. Methods: In this cross-sectional study, 60 caregivers of HD patients were recruited, 30 of them who cared for patients that regularly participated in an exercise programme during dialysis sessions and 30 caregivers who looked after patients undergoing usual HD treatment without intradialytic exercise. The caregivers were submitted to the Caregiver Burden Scale (CBS) and their quality of life (short-form-36 (SF-36)), anxiety and depression levels were assessed. Data were expressed as mean ± SD or median (interquartile range). Results: Multiple linear regression showed that the global CBS score was significantly associated with the exercise training after adjusting for age, educational level and anxiety level of caregivers, and dependency level of patients measured by the Lawton scale (coefficient of determination = 0.53; adjusted coefficient of determination = 0.48). Additionally, the caregivers of HD patients submitted to intradialytic exercise (42.0 ± 12.9 years, 33.3% male) compared to caregivers of patients undergoing usual treatment (50.7 ± 17.5 years, 26.7% male) exhibited less caregiver burden (global CBS score = 1.2 (0.2) vs 1.9 (0.7), P < 0.001), better quality of life (physical component score = 53.7 (9.6) vs 49.7 (16.2) and mental component score = 50.6 (17.5) vs 28.2 (32.5), P < 0.05) and lower anxiety (7.2 ± 4.2 vs 10.8 ± 4.1, P = 0.001) and depression levels (3.0 (3.3) vs 6.0 (5.3), P = 0.034), respectively. Conclusions: Intradialytic exercise training in HD patients was associated with lower burden of their family caregivers. 

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Effectiveness of a psychoeducational intervention for caregivers of People With Dementia with regard to burden, anxiety and depression: A systematic review

Aim To assess the effectiveness of psychoeducational interventions with respect to burden, anxiety and depression in family caregivers of People With Dementia living at home. Background In dementia, the family assumes the role of main caregiver, maintaining the patient in a good state of health. Nevertheless, burden, anxiety and depression may have negative repercussions in caregivers. Therefore, professional supports through psychoeducational programmes are recommended as interventions for improving caregivers' health. Design A quantitative systematic review. Data Sources Electronic searches were performed in CINAHL/AMED/CENTRAL/Web of Science/LILACS/PUBMED from January 2005–August 2018. Review Methods The review was conducted using the JADAD scale to assess bias risk and the quality of the randomized controlled trials (RCTs) and the CONSORT instrument to assess study quality report. The extracted data were reviewed by independent reviewer pairs. The review was reported using PRISMA. Results A total of 18 RCTs met inclusion criteria. Seven were classified as Technology‐based Interventions and 11 as Group‐based Interventions. Conclusion Psychoeducational interventions for caregivers allow them to increase their knowledge of the illness, develop problem‐solving skills and facilitate social support. Technology‐based Interventions significantly affect burden while Group‐based Interventions affect anxiety, depression, insomnia and burden and quality of life and self‐efficacy. Impact Research findings can be used to classify caregivers in future interventions according to illness stage to obtain more precise results.

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Palliative care needs in Parkinson's disease: focus on anticipatory grief in family carers

Background: A diagnosis of Parkinson's disease (PD) has a significant psychological impact on both the person diagnosed and their loved ones, and can have a negative effect on family relationships. Caring for someone with a long-term progressing illness may cause anticipatory grief, i.e., experienced before a bereavement. This has been widely studied in illnesses such as dementia and cancer, but less so in relation to PD. The study aims were: (I) to demonstrate the occurrence of anticipatory grief experienced by carers of people with PD; (II) to explore how this grief relates to caregiver burden and caregiver depression and demographic variables. Methods: Family carers of people with moderate to advanced PD (Hoehn & Yahr stages 3-5) were invited to complete a survey, including demographic questions and three questionnaires: Zarit Burden Interview (ZBI); 16-item Geriatric Depression Scale (GDS); and Anticipatory Grief Scale (AGS). Results: Anticipatory grief was common among carers of people with PD [mean AGS score =70.41; standard deviation (SD) =16.93; sample range, 38-102]. Though distinct concepts, carers with higher burden and depression scores also experienced more anticipatory grief symptoms. Carers experiencing higher anticipatory grief tended to be caring for someone of a younger age, displaying more non-motor symptoms, at a more advanced disease stage, and who considered either themselves and/or their loved one as depressed. Conclusions: Carers of people with advanced PD experienced anticipatory grief, as well as depression and a high caregiver burden. To improve carer outcomes, our focus should include the period both before and after the death of a loved one, and carers should receive regular psychological assessment and support.

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Potential for Digital Monitoring to Enhance Wellbeing at Home for People with Mild Dementia and Their Family Carers

Digital technologies have the potential to assist people with dementia to monitor day to day activities and mitigate the risks of living independently. This purposive pilot study surveyed participants for frailty, wellbeing, and perceived carer burden using the 3Rings(TM) digital plug. 30 paired participants used the digital device for four months. People with dementia reported a decline in wellbeing and increased frailty. Family carers reported a decline in wellbeing but 18 reported a reduction in burden. The use of digital monitoring by family carers demonstrated a reduction in their perceived burden and the device was acceptable to people with mild dementia living alone.

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Psychological Burden of Hepatic Encephalopathy on Patients and Caregivers

OBJECTIVES: Hepatic encephalopathy (HE) is common in advanced cirrhosis and is characterized by marked neuropsychiatric abnormalities. However, despite its severity and effects on brain function, the impact of HE on psychological status of patients has not been adequately assessed. The aim of this study was to evaluate the effect of HE on psychological status of patients and their informal caregivers. METHODS: Fifteen patients with cirrhosis and episodic or persistent HE and their corresponding informal caregivers were included. Semistructured interviews were performed in patients and caregivers. Quality of life (QoL) was assessed by the short-form 36 in both patients and caregivers, and the Zarit burden score was measured in caregivers. The analysis of interviews was performed using qualitative methodology. RESULTS: HE causes a major psychological impact on patients with HE. The first episode of HE caused a very significant impact that was reported with deep feelings, mainly of fear, anger, misery, anxiety, and sorrow, which persisted with time. Symptoms causing more psychological impact on patients were impaired ability to walk and speak. All effects were associated with a marked impairment in QoL. The psychological impact was also marked in caregivers who had a major burden, as assessed by the Zarit score. Moreover, QoL, particularly the mental component score, was markedly impaired in caregivers in intensity similar to that of patients. DISCUSSION: HE has a profound psychological impact on patients and their informal caregivers, associated with a marked negative influence on QoL. The psychological effects of HE on patients and caregivers should be evaluated and treated.

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

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

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Caregiving and bereavement in palliative care: A cross-cultural study between Brazil and Portugal

Caregiving and bereavement outcomes are strongly influenced by socio-cultural context. Past research has found higher levels of caregiver burden and psychological morbidity in Portuguese compared to Brazilian caregivers. This study compared Brazilian and Portuguese family caregivers in palliative care to identify differences in psychological morbidity and caregiver burden and their relationship with psychosocial factors such as sociodemographic variables, circumstances of end-of-life care and dying, social support, family functioning, and perception of quality of care. Prospective data were collected from convenience samples of family caregivers in Brazil (T0 n = 60; T1 n = 35) and Portugal (T0 n = 75; T1 n = 29) at two separate time points—during caregiving (T0), and during the first two months of bereavement (T1). The study samples consisted mostly of women, offspring, and spouses. In both countries, family caregivers devoted most of their day to taking care of their sick relatives and reported a lack of practical support. Portuguese caregivers had higher levels of burden than Brazilian caregivers, and in both populations a greater burden was associated with more psychopathological symptoms. Higher caregiver burden among Portuguese caregivers was associated with the circumstances of death and the perceived lack of emotional support. Among Portuguese caregivers, symptomatology persisted during bereavement, reaching significantly higher levels of anxiety, somatization, and peritraumatic symptoms compared to the Brazilian sample. These results show differences between family caregiver samples in Portugal and Brazil during the bereavement process. Understanding the underlying cultural patterns and mechanisms requires future research.

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Care and the shadow of the fourth age: how does home care get caught up in it and how does it stay away from it?

This article examines how care encounters at the elders' homes are forged, and how the way these encounters are forged avoids or evokes the social imaginary of the fourth age. Data were gathered in Portugal from elders receiving home care (16 cases), their care workers (eight cases) and family carers (six cases), through participant observation and informal conversations (conducted at the elders' homes), as well as focus groups. The collected data were analysed according to the procedures of Framework Analysis. This study found five forms of care encounters - marked by conflict, infantilisation, burden, harmony and indifference - the harmony form being the only one found to maintain the fourth age at a distance. It concludes that home care has a Janus-like nature in relation to the fourth age, and that the way home care encounters are forged depends on the conditions of the care settings and the actions of all participants in care encounters. It also concludes that it is difficult to maintain the social imaginary of the fourth age at a distance when the elders exhibit high levels of infirmity. Finally, it concludes that family carers play a crucial role in the way care encounters unfold. Implications for practice and policy include vocational training regarding the relational component of care, and information and educational programmes for family carers.

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Caregiving centenarians: Cross-national comparison in Caregiver-Burden between the United States and Japan

Background and Objectives: The personal distress associated with caring for a family member has been well documented; however, questions about the burden of caregiving for centenarians and cross-national differences in the caregiving context, remain unanswered. Research Design and Methods: This study includes reports by caregivers of 538 near-centenarians and centenarians in the U.S. and Japan: 234 from the Georgia Centenarian Study and 304 from the Tokyo Centenarian Study. Basic descriptive and multivariate regression analyses were conducted. Mean levels of caregiver burden and near-centenarian and centenarians’ characteristics (as predictors) for caregiver burden were compared between the U.S. and Japan. The near-centenarian and centenarians’ functional capacity and personality were assessed as predictors. Results: Differential predictive patterns in caregiver burden were found in the two groups. In the U.S., near-centenarian and centenarians’ agreeableness and conscientiousness were negatively associated with caregiver burden; whereas the near-centenarian and centenarians’ neuroticism and number of diseases were positively associated with caregiver burden. In Japan, the near-centenarian and centenarians’ activities of daily living, openness, and agreeableness were negatively associated with caregiving burden. Interaction effects between functional capacity and personality, on caregiver burden were observed only in the U.S. In the U.S., higher levels of agreeableness and openness significantly changed the level of caregiver burden associated with vision problems and a greater number of diseases. Discussion and Implications: Cross-national comparative predictors of caregiving burden between the two countries emphasized that caring for centenarians should be understood in the caregiving context, as well as the social context.

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Sources of Management Burden and Solutions among Primary Family Caregivers of the Alzheimer's Disease Patient: a Qualitative Study

Background: Alzheimer's disease is commonly seen in older people in China,in particular,its prevalence reaches 5.14% in those aged over 65 years,bringing huge management burden to primary family caregivers of the patient. It has received extensive attention worldwide. Objective: To investigate the sources of management burden and major solutions among primary family caregivers of the Alzheimer's disease patient, providing a basis for further development of the family management system for such patients. Methods: By use of purposive sampling,the primary family caregivers of 12 re-examined outpatients with Alzheimer's disease were recruited from Hangzhou Seventh People's Hospital and Zhejiang Provincial Hospital of TCM from September to December 2018 were recruited,and were interviewed intensively using a phenomenological approach. Colaizzi's seven-step analysis was performed to analyze the interview results. Results: Five subthemes of management burden sources of the primary family caregivers for the Alzheimer's disease patient were summarized as follows: lack of sufficient care knowledge to cope with the patient's complex conditions, social burden, emotional burden, physical burden and unappreciated care. For the solutions to the management burden, two themes of caregiver self-management strategies and patient family management strategies with six subthemes such as rational acceptance and active accommodation and so on arose. Conclusion: Medical professionals and others need to provide effective emotional support and adequate care knowledge for primary family caregivers for the Alzheimer's disease patient to help them form effective family management strategies. At the same time, the diversified long-term care system should be improved to reduce the burden of care.

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The effectiveness of a nurse‐led intervention to support family caregivers in end‐of‐life care: Study protocol for a cluster randomized controlled trial

Aim To evaluate the feasibility of a structured nurse‐led supportive intervention and its effects on family caregivers in end‐of‐life care at home.Background Family caregivers are crucial in end‐of‐life care. They may experience burden due to the responsibilities associated with caregiving. Some family caregivers feel insufficiently prepared for their caregiver role. Nurses have a unique position to provide supportive interventions at home to reduce caregivers’ burden and improve preparedness. However, few nurse‐led interventions are available to support family caregivers in end‐of‐life care at home. Design We will perform a cluster randomized controlled trial. The clusters consist of twelve home care services, randomly assigned to the intervention group or the control group. Methods The study population consists of family caregivers of patients in the last phase of life. In the intervention group, nurses will systematically assess the supportive needs of family caregivers, using an assessment tool and the method of clinical reasoning. Family members of the control group receive care as usual. Primary outcome is burden measured by the Self‐Rated Burden Scale. Secondary outcomes are preparedness for caregiving, caregiving reactions and acute (hospital) admissions of the patient. In addition, the feasibility of the intervention will be evaluated. The study was funded in October 2016 and was ethically approved in April 2019. Impact Findings from this study will contribute to the scientific and practical knowledge of nursing interventions to support family caregivers in end‐of‐life care. Trial registration The Netherlands Trial Register (NL7702)

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Direct and indirect predictors of burden among Bedouin caregivers of family members with terminal cancer in Israel

Objective: The diverse demands of cancer care, which require time, psychological, physical, and material resources, often lead to caregiver burden. Studies with caregivers from ethnic minority groups suggest that they have unique beliefs and may experience different perceptions of role demands and caregiving. The aim of this study was to identify direct and indirect predictors of burden among Bedouin caregivers of family members with terminal cancer in Israel. Methods: A total of 101 Bedouin family caregivers of terminal cancer patients participated in this study. Participants were recruited from the oncology department of the largest medical center in southern Israel. The questionnaire battery included the Arabic version of the Zarit Burden Interview and other reliable measures validated for cancer caregiving. We performed path analyses on data allowing us to identify hypothesized, and un-hypothesized predictors of burden in this understudied population. Results: Most caregivers were adult children, followed by spouses, siblings and other family members. In our model, caregiver burden was directly predicted by depressive symptoms and (absence of) social support. Burden was indirectly predicted by quality of life (via depressive symptoms), optimism (via social support), emotional exhaustion (via quality of life and depressive symptoms) and mortality communication (via emotional exhaustion, quality of life and depressive symptoms). Conclusion: Social support and depression are the most important factors among all studied measures. Culturally-tailored intervention programs are required to foster community care and mitigate burden for Bedouin and other ethnic minority groups in Israel. 

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The unique burden of rare cancer caregiving: caregivers of patients with Erdheim-Chester disease

Research examining the experience of informal caregivers (ICs) for patients with rare cancers is limited. This was a mixed-methods pilot study of 14 ICs for patients with Erdheim-Chester disease (ECD), an ultra-rare neoplasm. Participants were predominantly female and over half provided at least 60% of their loved one's care. Participants completed measures of the impact of caregiving, caregiver burden, unmet needs, quality of life, anxiety, and depression. Participants reported substantial impact of caregiving, including limiting (50%) or discontinuing (21%) paid employment, and exhausting financial savings (43%). ICs reported a moderate level of burden with five (38%) reporting risk for burnout. While participants reported anxiety (64%) and depression (14%), their overall quality of life was favorable. Semi-structured interviews highlighted factors related to the distress and isolation of navigating a rare cancer. ECD ICs report burden and distress shaped by the experience of providing care for a patient with a rare cancer.

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Emotion regulation therapy for cancer caregivers-an open trial of a mechanism-targeted approach to addressing caregiver distress

Informal caregivers (ICs) are integral to care provided to patients facing life-threatening or incurable illnesses. This responsibility causes considerable burden, as approximately one half of ICs report clinically significant symptoms of depression and/or anxiety that persist when left untreated. Psychosocial interventions containing efficacious treatment principles (e.g., cognitive behavior therapy [CBT]) show disappointing results in reducing anxiety and depression in ICs. This may reflect failure of these interventions to specifically target crucial mechanisms underlying the central feature of distress caused by the patient's illness-notably, perseverative negative thinking (PNT). Emotion Regulation Therapy (ERT) is an efficacious CBT developed to explicitly target mechanisms underlying PNT and the emotional concomitants that arise in response to stressful situations. This open trial was conducted to evaluate the acceptability and initial efficacy of ERT adapted to the experience of cancer ICs (ERT-C). Thirty-one ICs provided informed consent and completed eight weekly individual sessions of ERT-C. Participants completed self-report measures of depression and anxiety symptoms, PNT, emotion regulation deficits, and caregiver burden before and after treatment. ERT-C was well tolerated as indicated by 22 treatment completers and feedback provided in exit interviews. ICs demonstrated reduced depression and anxiety symptoms, PNT, and emotion regulation deficits with moderate to large effect sizes (Hedge's g range: 0.36-0.92). Notably, caregiver burden was not reduced but ICs expressed more ability to confront caregiving-related challenges. Findings offer promising but preliminary support for ERT-C as a conceptual model and treatment modality for distressed cancer ICs. 

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Burden of care in caregivers of patients with alcohol use disorder and schizophrenia and its association with anxiety, depression and quality of life

Background Caregivers play a pivotal role in providing care for mentally ill patients. Increase in caregiver burden can make them vulnerable to mental illness themselves.Aims We assessed the severity of burden of care and its association with depression, anxiety and quality of life among caregivers of patients with alcohol use disorder (AUD) and schizophrenia. Methods This was an observational, cross-sectional, single-centred study of 50 consecutive caregivers of patients with AUD and schizophrenia. Participants were recruited from the psychiatry outpatient department of a tertiary care hospital between January and June 2017. The caregivers were further assessed by demographic details, Hospital Anxiety Depression Scale for assessment of depression and anxiety, Zarit Burden Interview for assessment of caregiver burden and WHO Quality Of Life-BREF for assessment of quality of life. Statistical data were analysed using GraphPad InStat V.3.06 (California). Multiple linear regression analysis was applied to identify the predictors of caregiver burden. Results Burden of care experienced by caregivers of patients with AUD is as high as that of caregivers of patients with schizophrenia (U=1142.5, p=0.46). Caregivers experiencing high burden of care are likely to have symptoms of anxiety (U=22, p&lt;0.001), depression (U=32, p&lt;0.001) and poor quality of life (U=84.5, p&lt;0.001). Female caregivers are likely to experience higher burden of care (U=819.5, p=0.006). For caregivers of patients with schizophrenia, anxiety, environmental health, socioeconomic status and patients’ occupation can predict burden of care, while for caregivers of patients with AUD, depression and environmental health can predict burden of care. Conclusion Our study suggests that caregivers of patients with AUD experience burden of care as high as that of caregivers of patients with schizophrenia. Caregivers with high burden of care are more likely to have depression, anxiety and poor quality of life. Trial registration number CTRI/2017/03/008224.

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

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

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Predictors of the burden on family carers of patients on haemodialysis in Jordan

Background: Family caregivers of patients on haemodialysis can experience life changes and depression. Aims: This study assessed the self-perceived burden on their family caregivers of haemodialysis patients in Jordan, and the caregivers' perceived burden of caregiving and depression. The predictors of caregiver outcomes were determined. Methods: This cross-sectional study included 190 patients on haemodialysis and their caregivers in Jordan. Patients' self-perceived burden on their caregivers was assessed using the self-perceived burden scale. For caregivers, burden was assessed using the Oberst caregiving burden scale and Bakas caregiving outcomes scale - difficulty subscale. Caregivers' depression was assessed using the patient health questionnaire-9. Mean scores and standard deviations (SD) were calculated. Multiple regression analysis was done to determine the predictors of caregiver outcomes. Results: Patients thought that they were a moderate to severe burden on their caregivers (mean score 36.31, SD 3.48). Caregivers perceived themselves as moderately burdened, and thought that their lives had changed for the worse because of caregiving (mean score 2.82, SD = 0.98). Caregivers were moderately depressed (mean score 1.80, SD 0.42). Multiple regression analysis showed that the perceived difficulty of caregiving tasks and patients' self-perceived burden predicted the caregiver outcomes. The difficulty of caregiver tasks explained 38% of the overall variance in the caregiver outcomes. Patient's self-perceived burden on their caregivers explained 16.4% of the variance. Conclusion: Factors that affect the burden on caregivers of dialysis patients should be identified and interventions considered to support caregivers and reduce this burden.

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Caregiving burden and mental health problems among family caregivers of people with dementia in rural Uganda

Background Alzheimer's disease and related dementias are associated with increasing health burden in low- and middle-income countries. Less well-recognized is the potential health burden experienced by other affected individuals, such as family caregivers. In this study, we sought to profile the burden of care and its association with symptoms of depression and anxiety among informal caregivers of people living with dementia in rural southwestern Uganda. Method We conducted a cross-sectional study of 232 family caregivers of people with dementia. The key measured variables of interest were caregiving burden (Zarit Burden Index) and symptoms of depression and anxiety (Depression Anxiety Stress Scales). We fitted multivariable regression models specifying depression and anxiety symptoms as the primary outcomes of interest and caregiving burden as the primary explanatory variable of interest. Results Family caregivers of people with dementia experience significant caregiving burden, with each item on the Zarit Burden Index endorsed by more than 70% of study participants. Nearly half [108 (47%)] of caregivers had Zarit Burden Interview scores >60, suggestive of severe caregiving burden. In multivariable regression models, we estimated a statistically significant positive association between caregiving burden and symptoms of both depression [b = 0.42; 95% confidence interval (CI) 0.34-0.49] and anxiety (b = 0.37; 95% CI 0.30-0.45). Conclusion Family caregivers of people with dementia in rural Uganda experience a high caregiving burden, which is associated with symptoms of depression and anxiety. Interventions aimed at reducing caregiving burden may have important collateral mental health benefits.

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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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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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Social support and depressive symptoms among family caregivers of older people with disabilities in four provinces of urban China: the mediating role of caregiver burden

Background: To examine the relationship between social support and depressive symptoms of Chinese family caregivers of older people with disabilities, and to evaluate the role of caregiver burden as a potential mediator of that relationship.; Methods: A survey questionnaire was completed face-to-face by 567 primary family caregivers of older people with disabilities in four provinces in China. Covariates that may affect depressive symptoms, such as the characteristics of disabled people (socio-economic factors, functional and cognitive capacity) and caregivers (caregiver duration and self-rated health of caregivers) were collected. Social support was measured by the Multidimensional Scale of Perceived Social Support (MSPSS); depressive symptoms were assessed by the shortened 10 item version of Center for Epidemiological Studies Depression scale (CES-D); and the caregiver burden was assessed by the Zarit Burden Interview (ZBI).; Results: The prevalence of depressive symptoms among caregivers was 37.7%. Higher levels of social support was negatively associated with lower depressive symptoms. This relationship was partially mediated by the caregiver burden, where higher levels of the caregiver burden were negatively associated with depressive symptoms. Furthermore, caregivers who were women, spent extended time in caregiving and were in poor health, reported significantly higher depressive symptoms.; Conclusions: Our results indicated that social support was negatively associated with depressive symptoms in family caregivers and in the caregiver burden. The caregiver burden partially mediated the social support-depressive symptoms association. Interventions for family caregivers should include increasing social support, health monitoring and structured interventions to reduce the caregiver burden and attenuate family caregivers' depressive symptoms.

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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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Optimism as a key to improving mental health in family caregivers of people living with Alzheimer's disease

Objective: The aim of the present work was to study the serial multiple mediating role of optimism, perceived social support and subjective burden in the relationship between objective burden and psychological distress in caregivers of people with Alzheimer´s Disease (AD). Method: One hundred and forty family caregivers of people living with AD were recruited from randomly selected Alzheimer Association Centres. They answered the General Health Questionnaire (GHQ), the Life Orientation Test-Revised (LOT-R), the Functional Social Support Questionnaire (DUKE.UNC), the Zarit Burden Interview (ZBI) and questions relating to gender, age and the amount of time spent on daily caregiving. Results: Results indicated that objective burden and subjective burden were both high in these caregivers. Optimism mediated on psychological distress through social support and through subjective burden with a full mediation role. When comparisons between indirect effects were performed, optimism was the mediator with the greatest effect between objective burden and psychological distress. Conclusion: This study highlights the indirect role of optimism and the advantages that interventions in optimism training in the early stages of the person with AD could produce. Thus, alleviating subjective burden and increasing perceived social support, which would lead to an improvement in the mental health of family caregivers of people with AD.

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Objective and Subjective Dementia Caregiving Burden: The Moderating Role of Immanent Justice Reasoning and Social Support

Caregiving burden significantly effects the physical and mental health of family dementia caregivers. While the association between objective caregiving burden (OCB) and subjective caregiving burden (SCB) of family dementia caregivers is well documented, little is known as with how the association is moderated by the configuration of intrapersonal resource (e.g., immanent justice reasoning) and interpersonal resource (e.g., social support). The present study collected cross-sectional data on 157 major family caregivers of non-institutionalized persons with dementia in an urbanizing region of Western China's Sichuan Province. They responded to questions on daily time spent on caregiving, the short version of Zarit Burden Interview (ZBI), a sub-scale of a caregiver meaning scale, Social Support Rating Scale (SSRS), and demographic questions. Controlling for the demographic variables of the caregivers, this study found that the objective and subjective dementia caregiving burden were significantly associated (p < 0.001), and immanent justice reasoning was positively correlated with subjective burden (p < 0.01). Moreover, the association between OCB and SCB was significantly positive when social support and immanent justice reasoning were both high (p < 0.001), but neutral when social support was high and immanent justice reasoning was low. The association between OCB and SCB was significantly positive when social support and immanent justice reasoning were both low (p < 0.05), but neutral when social support was low and immanent justice reasoning was high. This research suggests the importance of developing intervention programs that consider the configuration of the external supporting resources and internal meaning-making of caregiving of the family dementia caregivers.

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

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

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Informal Caregiver Burden and Benefits and Older Adult Mortality: A Survival Analysis

Objective: Informal caregivers are crucial to maintaining older adults' health, but few studies examine how caregiving receipt is associated with older person longevity. In a nationally representative sample, we prospectively explore whether and how having an informal caregiver is associated with older adult overall mortality, and how caregivers' burden and benefits perceptions relate to care recipient mortality.; Methods: We match six National Health and Aging Trends Study waves (2011-2016) with 2011 National Study of Caregiving data, conducting survival analysis on 7,369 older adults and 1,327 older adult-informal caregiver dyads.; Results: Having an informal caregiver is associated with 36% (p<0.001) higher mortality risk over 6-year follow-up, adjusting for demographic, economic and health factors. Older adults whose caregivers perceive only burden have 38% higher (p<0.05) mortality risk than those with caregivers reporting neither burden nor benefits. This risk is reduced from 38% higher to 5% higher (p<0.001) for older adults with caregivers reporting benefits alongside burden, compared to those with caregivers reporting neither perception.; Discussion: Having a caregiver may signal impending decline beyond known mortality factors. However, interventions to increase caregivers' benefit perceptions and reduce their burden may decrease mortality risk for older adults with declining health and functional ability.

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How cancer of oral cavity affects the family caregivers? - A cross-sectional study in Wardha, India, using the Caregiver Quality of Life Index - Cancer questionnaire

Introduction: Oral cancer is now a major public health problem in India. It does not only affect the patient, but also has a deep psychosocial impact on the family caregivers who are deeply involved with the cancer patient for nursing, timely medication, and consulting the doctor. Studies have found that the caregivers often suffer from depression, anxiety, and fear of losing their near and dear ones. This study aims to capture the psychosocial impact of oral cancer on the family caregivers.; Materials and Methods: This was a cross-sectional study carried out in a tertiary care hospital with the primary caregivers of those oral cancer patients who completed their treatment and came for follow-up after 2-3 months of treatment completion. The study participants were recruited till a sample size of 100 was reached. This was adequate to report proportions with an error of 10%. We have used "The Caregiver Quality of Life Index - Cancer" scale to capture the psychosocial impact of oral cancer on primary caregiver of the patient. The study was initiated after obtaining approval from the Institutional Ethics Committee. Informed written consents were obtained from all the study participants before beginning the interviews.; Results: Caregivers played an important role in the recovery of the patients. However, the strain of caregiving resulted in increased emotional stress among them. We found 56% of the family caregivers were female and 41% were male. Majority of the caregivers who accompanied the patients to hospital were the spouses. For the caregivers, the mean score for burden of the disease was found to be 60.0 (±20.2), that for disruption was 50.4 (±21.7), and for positive adaptation was 61.4 (±20.7).; Conclusion: Caregivers, who are usually invisible to the health-care team, should be recognized and their mental and physical well-being should also be given attention.

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Functional Support and Burden Among Out-of-Home Supporters of Heart Failure Patients With and Without Depression

Objective: Over 20% of patients with heart failure (HF) experience clinical depression, which is associated with higher rates of mortality, morbidity, and hospitalization. Support from family members or friends (whom we refer to as care partners [CPs]) can lower the risk of these outcomes. We examined whether HF patients with depression received assistance from CPs living outside of their homes. Further, we examined whether patient depression was associated with support-related strain among out-of-home CPs. Method: We analyzed baseline survey data from 348 HF patients with reduced ejection fraction and their CPs. Patients with scores on the Center for Epidemiological Studies Depression Scale–10 (Kohout, Berkman, Evans, & Cornoni-Huntley, 1993) of ≥10 were classified as having clinically significant depressive symptoms (i.e., depression). Outcomes included CP-reported hr per week helping with health care and talking with patients via telephone and scores on the Modified Caregiver Strain Index. Negative binomial regression models examined differences in the amount of in-person and telephone support for patients with and without depression, controlling for patients' comorbidities, living alone, CP geographic distance, and CP emotional closeness to the patient. Results: CPs provided more in-person support to HF patients with depression (M = 3.64 hr) compared with those without depression (M = 2.60 hr per week, incident rate ratio [IRR] = 1.40, p =.019). CPs provided more telephone support to patients with depression (M = 3.02 hr) compared with those without depression (M = 2.09 hr per week, IRR = 1.42, p <.001). Patient depression had no effect on caregiver burden (IRR = 1.00, p =.843). Conclusion: Patients with clinically significant depressive symptoms receive more in-person assistance and telephonic support from CPs. Despite that additional contact, caregiver burden was not greater among the supporters of depressed patients.

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Family Caregiving for Older Adults

Family members are the primary source of support for older adults with chronic illness and disability. Thousands of published empirical studies and dozens of reviews have documented the psychological and physical health effects of caregiving, identified caregivers at risk for adverse outcomes, and evaluated a wide range of intervention strategies to support caregivers. Caregiving as chronic stress exposure is the conceptual driver for much of this research. We review and synthesize the literature on the impact of caregiving and intervention strategies for supporting caregivers. The impact of caregiving is highly variable, driven largely by the intensity of care provided and the suffering of the care recipient. The intervention literature is littered with many failures and some successes. Successful interventions address both the pragmatics of care and the emotional toll of caregiving. We conclude with both research and policy recommendations that address a national agenda for caregiving.

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Factors Affecting Psychological Burden on the Informal Caregiver of Patients With Cirrhosis: Looking Beyond the Patient

Cirrhosis leads to considerable morbidity and mortality, compromises quality of life, and often necessitates assistance in activities of daily living. An informal caregiver bears the psychological burden of coping with the needs of the patient and the knowledge of morbid prognosis of a loved one. This aspect is rarely recognized and almost never addressed in a clinical practice. This cross-sectional study assessed the factors influencing psychological burden of cirrhosis on the caregivers in a predominantly lower-middle socioeconomic class Indian population. Patients underwent psychometric tests [Psychometric Hepatic Encephalopathy Score (PHES)], and questionnaires for quantifying caregiver burden [Perceived Caregiver Burden (PCB) and Zarit Burden Interview (ZBI)] and assessing depression [Beck Depression Inventory (BDI)] and anxiety [Beck Anxiety Inventory (BAI)] were administered. One hundred patients with cirrhosis [70% male, 27% with past hepatic encephalopathy (HE), and 53% with minimal HE] and their caregivers (66% women, 81% spouse, 26.51 years of mean relationship) were evaluated. Caregiver burden scores were higher in patients with previous overt HE than in those without previous overt HE [PCB (74.63 vs. 66.15, P = 0.001), ZBI (27.93 vs. 21.11, P = 0.023), BDI (11.63 vs. 8.96, P = 0.082), and BAI (11.37 vs. 8.12, P = 0.027)]. Similarly, caregivers of patients with minimal HE had higher caregiver burden that those of patients who did not have minimal HE [PCB (70.74 vs. 65.85, P = 0.027), ZBI (26 vs. 19.51, P = 0.015)]. Burden scores correlated well with each other and with liver disease severity scores and negatively correlated with socioeconomic status. Repeated hospital admissions, alcohol as etiology, and lower socioeconomic status were the independent predictors of caregiver burden. Higher perceived burden is common in caregivers of patients with cirrhosis. Repeated hospital admissions, alcoholism, and lower socioeconomic status influence caregiver burden. 

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Evaluating the Effect of Family-Centered Intervention Program on Care Burden and Self-Efficacy of Hemodialysis Patient Caregivers Based on Social Cognitive Theory: A Randomized Clinical Trial Study

Background: Caregivers of hemodialysis patients spend a large amount of time providing care to these patients while tolerating fatigue and stress. This study evaluated a family-centered empowerment program on the care burden and self-efficacy of hemodialysis patient caregivers based on social cognitive theory.; Methods: In this randomized clinical trial, 70 family caregivers of hemodialysis patients in Isfahan, Iran, were selected and randomly allocated to intervention and control groups, in 2015-2016. Two questionnaires were used to collect the family caregivers' characteristics, care burden, and self-efficacy, and patients' negative and positive outcomes expectancies. Data were analyzed using SPSS before, immediately after, and 2 months after the intervention.; Results: There was no significant difference in the mean scores of care burden, positive outcomes expectancies, negative outcomes expectancies, and self-efficacy between the two groups before the intervention. However, there were significant differences in the post-test and follow-up data analyses (P<0.05).; Conclusion: Given the degenerative nature of chronic kidney disease, it can be considered as a source of long-term and chronic stress for caregivers. Therefore, by implementing an empowerment program, caregiving behaviors can be improved, positive outcomes expectancies can be increased, and negative outcomes expectancies can be reduced.

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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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Effects of supporting patients with dementia: A study with dyads

Purpose: This study aimed to examine the factors associated with the development of higher burden in informal caregivers of patients with dementia, using dyadic data.; Design and Methods: Seventy-two dyads of patients with dementia and their informal caregivers were assessed, the former in terms of behavioral-psychological symptoms and autonomy, the latter in terms of burden and individual needs.; Findings: Caregivers at risk for developing higher burden are those who are female, whose care recipient present psychiatric symptoms and lower autonomy, and those who recognize the need for more information/support.; Practice Implications: Interventions should offer caregivers the tools to provide care, maintaining their psychological well-being. Interventions should target not only common aspects of caregiver burden but also the specificities of caring for a person with dementia.

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The Effect of National Family Caregiver Support Program Services on Caregiver Burden

Extant evidence on the effectiveness of caregiver programs in alleviating caregiver burden is mixed, underscoring the need for further investigations. This study evaluated the effect of the National Family Caregiver Support Program (NFCSP) educational services and respite care on caregiver burden. We used survey data from caregivers assigned to program (n = 491) or comparison (n = 417) group based on their reported use of NFCSP services. Adjusted difference-in-differences (DiD) analysis found an increase in mean burden scores for both groups from baseline to 6 or 12 months. Among program caregivers receiving ≥4 hr of NFCSP respite care per week (n = 307) and matched comparisons (n = 370), burden scores decreased slightly for program caregivers (-0.095 points), but increased for comparison caregivers (+0.145 points). The DiD (0.239 points) was not statistically significant. More research is needed to determine the minimum amount of respite care needed to positively impact caregiver burden.

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Educational intervention for informal caregiver of person with dementia: A systematic review

The role of caregivers is very important in the management of person with dementia, where it is not uncommon for them to experience psychological distress. However, the level of distress can be managed and reduced through strategic educational intervention. A systematic review has been conducted through searching Medline, Science direct, Cochrane library and EMBASE databases to provide a narrative synthesis that elaborate on methods and outcomes of the educational intervention among informal caregiver of person with dementia. From a total of 5125 records, eight studies were selected and included in this review, where the results show that educational intervention can be implemented either as individual or group intervention. Group intervention methods mainly focus on training programs such as workshops and lectures, and also group-based discussions. While for individual intervention, most of the activities were implemented through self-learning using technology or computer-based systems. In conclusion, based on the outcome of the studies, both methods of implementations are found to be useful in reducing psychological distress of the informal caregiver. 

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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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A comparison of primary and secondary caregivers of persons with dementia

Having 2 or more relatives involved in the informal care of people with dementia is frequent worldwide. There are, however, few comparisons of primary and secondary caregivers and even fewer of those who are caring for the same person. Our study aimed to contrast these 2 experiences of caregiving. We compared 2 related samples of 61 primary and 61 secondary family caregivers of the same persons with dementia in a nonrandomized cross-sectional study. Caregivers' main outcome assessments were the Zarit Burden Interview (for subjective burden), the General Health Questionnaire (for psychological distress), and the Positive Aspects of Caregiving scale. We controlled for caregiver variables (e.g., demographics, caregiving arrangements, social support, sense of coherence) and the neuropsychiatric symptoms of dementia. Subjective burden was higher in primary than secondary caregivers (p = .013), but positive aspects of caregiving did not differ (p = .150). Psychological distress was high at clinically relevant levels in primary and secondary caregivers, without statistically significant differences between groups (p = .456). The findings demonstrate that notwithstanding the difficulties faced by primary caregivers, secondary caregivers may also experience clinically significant distress. Therefore, their needs for assistance and support should be addressed more systematically. These findings call for systemic family-focused interventions in dementia that address the support each person provides or might provide, as well as the psychological distress each person may feel. 

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Changes in Family Dynamics in Caregiving for People With Dementia in South Korea: A Qualitative Meta-Synthesis Study

Living with a person with dementia considerably affects the lives of both the primary caregiver and the entire family. This study aimed to synthesize the findings of qualitative studies that explored dementia caregivers' experiences, to further understand the impact of dementia caregiving on family dynamics. Thirty-seven qualitative studies were analyzed and synthesized according to the meta-synthesis methods suggested by Sandelowski and Barroso. Four themes were identified to describe the impact of dementia caregiving on the family: cracked foundation of the family caused by dementia, voluntary or involuntary setup of a marked boundary of care, family as supportive foreground versus reluctant or interfering background, and re-established relationships within and outside the family. The findings illuminate that dementia caregiving has a destructive impact on the entire family, and therefore, it is imperative to develop interventions and infrastructures for both the caregiver and the entire family of individuals with dementia. 

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

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

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Berlin Inventory of Caregiver Stress-Dementia (BICS-D)

Background and Objectives: Dementia is becoming increasingly prevalent and family caregivers have been providing most of the care for persons with dementia. This caregiving is a mentally and physically demanding task. "The Berlin Inventory of Caregiver Stress-Dementia" (BICS-D) is a theory driven, multidimensional assessment which was developed as part of the Longitudinal Dementia Caregiver Stress Study (LEANDER).; Research Design and Methods: The inventory consists of 25 subscales with a total of 121 items. Analyses of the psychometric properties of the inventory were based on responses from 594 caregivers.; Results: Factor analyses confirm the multidimensionality of the inventory. The reliabilities of the subscales (Cronbach's α) are between .72 and .95. Validity and sensitivity of the inventory were also confirmed. Differing patterns of burden could be demonstrated for different relatives (partners, children, and daughters-in-law) as well as for different degrees of severity of dementia.; Discussion and Implications: The scores derived for the instrument have support for reliability and validity, and sensitivity to change. It is suitable for the differential measurement of burden experienced by different subgroups of caregivers as well as for the evaluation of interventions. The different subscales of the battery can also be used separately, depending on the study's objectives.

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Association between sleep, care burden, and related factors among family caregivers at home

Aim: Several studies have reported a negative correlation between depressive symptoms and family caregivers' (FCs) subjective sleep status. However, there is a paucity of information on the association between objective/subjective sleep status, care burden, and related factors.; Methods: Participants were 23 pairs of care receivers (CRs; Mage = 82.7 ± 8.5 years; 69.6% women) receiving long-term care at home and their FCs (Mage = 66.9 ± 11.0 years; 69.6% women). At baseline, demographic data, subjective sleep status (Pittsburgh Sleep Quality Index; PSQI), WHO-5 well-being, depressive mood, and frequency of going outdoors were collected. FCs wore a small, wrist-worn device with an accelerometer to assess objective sleep status for a consecutive 24-h 2-week period, and they answered the Zarit Burden Interview short version (ZBI) every night before sleep. After 3 months, CR status was collected and analysed retrospectively.; Results: The mean total sleep time over 2 weeks was 349.5 ± 69.6 min. The mean ZBI score over 2 weeks was 8.8 ± 6.8, which was significantly correlated with total sleep time (r = -0.42; P < 0.05), total time in bed (r = -0.44; P < 0.05), PSQI (r = 0.62; P < 0.01), frequency of going outdoors by CRs (r = -0.42; P < 0.05), and WHO-5 well-being among CRs (r = -0.50; P < 0.05). Multiple regression analyses revealed that total sleep time (β = -0.51; P < 0.05) was significantly associated with care burden (adjusted R2 = 0.45). At the 3-month follow-up, four CRs had been hospitalised or died, and their FCs displayed significantly severe care burden and slept less than at baseline.; Conclusions: Reduced objective total sleep time is significantly associated with the severity of care burden among FCs. Home-based care is critical in Japan; therefore, it is meaningful to determine how to reduce care burden.

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

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

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"Tipping point" concept analysis in the family caregiving context

Aim: Analyze the concept "tipping point" in the older adult family caregiving context to further knowledge about caregiving families, enhancing transdisciplinary theory, research, and practice. Background: While used commonly in some disciplines, how "tipping point" has been used in health care, generally, and in relation to caregiving families, specifically, is less clear. This project was conducted to offer conceptual clarity to tipping point. Design: Walker and Avant's framework. Data Source: Searches of scholarly literature in PsycINFO, CINAHL, and PubMed using the search term "tipping point" in either title or abstract. Review Methods: Definitions used were extracted; instances when the concept was implied but the actual term "tipping point" was not used and contexts where the term was used or implied were identified. Results: The composite definition of a caregiving tipping point is a seemingly abrupt, severe, and absolute change event involving either the older adult or caregiver(s), or both that indicates a breakdown in the status quo of the caregiving system. Conclusions: Transdisciplinary research, care, and policy should treat caregiving families as complex systems, use longitudinal assessments, and include colloquial communication. Early detection of impending tipping points will provide family‐centered decisional support and enhance families' quality of life and safety.

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Telephone-based behavioral activation intervention for dementia family caregivers: Outcomes and mediation effect of a randomized controlled trial

Objectives: The study examined the effects of a telephone-administered psycho-education with behavioral activation intervention (TBA) for family caregivers of person's with Alzheimer's dementia to reduce levels of depressive symptoms and burden and to enhance relationship satisfaction with the care-recipient METHODS: A double-blinded randomized trial compared TBA with telephone-based psycho-education with general monitoring (TGM). Ninety-six dementia caregivers were randomized. Both conditions received four weekly psycho-education sessions led by a social worker. TBA participants then received eight bi-weekly behavioral activation practice sessions delivered by paraprofessionals. TGM participants received eight bi-weekly monitoring sessions by paraprofessionals.; Results: As compared to TGM, TBA participants reported significantly larger reductions in depressive symptoms and burden and larger improvement in relationship satisfaction. Self-efficacy for controlling upsetting thoughts was found to have a partial meditation effect between TBA and the reduction of depressive symptoms. Qualitative feedback suggested that TBA participants expressed unique gains in awareness and developing new ways of reappraising the caregiving situation.; Conclusion: TBA was an effective intervention to reduce depressive symptoms and burden as well as to enhance relationship satisfaction in dementia caregivers.; Practice Implications: The use of telephone and trained paraprofessionals can enhance the accessibility and sustainability of behavioral activation intervention for dementia family caregivers.

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Supporting family caregiver engagement in the care of old persons living in hard to reach communities: A scoping review

Today, 8.5% of the world's population is 65 and over, and this statistic will reach 17% by 2050 (He et al., U.S. Census Bureau, international population reports, P95/16‐1, An ageing world: 2015, U.S., 2016). They are the people who, with increasing age, will find themselves more closely interfacing with the national health system, which in many countries shows strong imbalances between rural and urban areas. In this context, a fundamental role is played by the relatives who find themselves becoming informal caregivers to compensate for lack of services. To date, however, little has been done to help these people. In this article, we want to identify the nature and extent of research evidence that had its objective to help informal caregivers in rural, hard to reach areas (Grant & Booth, Health Information & Libraries Journal, 2009, 26, 91). Following the approach set out by Arksey and O'Malley (International Journal of Social Research Methodology, 2005, 8, 19), we conducted a scoping review in May 2018 and closed the review with an update in September 2018. We identified 14 studies published from 2012, the European Year of Active Ageing, promoted by the European Commission, which had three domains of implementation: emotional support to decrease the emotional burden of caregivers, educational support to increase their skills, and organisational support to improve the mobility of caregivers and carereceivers. Although informal caregivers play a fundamental role in many countries, the studies that have been involved in alleviating their caring burden are few; nevertheless, they provide interesting indications. This lack of attention confirms how this portion of the population is still neglected by scientific research and risks having unequal access to health and social care. Future research is needed, not only to create and improve services to caregivers in rural, hard to reach areas, but also to evaluate and focus on the participation and the engagement of caregivers in the co‐design of these services. 

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Sleep Quality in Caregivers of Older Patients with Schizophrenia Spectrum and Bipolar Disorders: A Case-Control Study

Objectives: Prior literature has documented the global burden of serious mental illnesses. The present study aimed to compare the sleep quality in caregivers of older patients with schizophrenia spectrum and bipolar disorders with control participants who did not serve as caregivers. Methods: We performed a case-controlled, cross-sectional study among family caregivers of older patients with psychotic disorders in Razi Hospital, Tunisia. Subjective sleep quality was assessed using the Pittsburgh Sleep Quality Index Scale (PSQI). Results: Fifty caregivers of older patients (≥ 60 years) with schizophrenia spectrum and bipolar disorders, and 50 matched controls were enrolled. The three sub-dimensions of the PSQI, namely subjective sleep quality, sleep duration, and sleep efficiency, as well as overall PSQI scores, were worse for caregiver participants. Hierarchical multiple regression analyses predicting PSQI scores revealed that caregivers' age and marital status were the only significant predictors in the final model. Conclusions: Older adults with severe mental disorders constitute a vulnerable population which generates a significant burden of care, and impacts their caregivers' subjective sleep quality. Clinical Implications: Family interventions, including sleep interventions, should be considered as an integral component of treatment for serious mental illnesses. When promoting sleep quality, older and single caregivers should be targeted.

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The relationship between comorbidities in dementia patients and burden on adult–child primary caregivers: Does having a secondary caregiver matter?

Primary family caregivers of patients with dementia often experience high caregiver burden and significant decline in a range of health outcomes. The current study examined the relationship between medical comorbidities of inpatients with dementia and caregiver burden in adult–child primary caregivers, and the buffering effect of having a secondary caregiver on the relationship between patients' comorbidities and caregiver burden. The study is a secondary analysis of data from a cross‐sectional observational study design. The sample comprised 477 dyads of inpatients with dementia and adult–child primary caregivers attending the neurological department of two grade A hospitals. All the inpatients were assessed with the Charlson Comorbidity Index (CCI) and the Mini‐Mental State Examination (MMSE). All the adult–child primary caregivers were assessed with the Zarit Burden Interview (ZBI) and completed the questionnaires on socio‐demographic data, caring hours, presence of secondary caregiver, and the level of impairment of the patient. Higher burden was associated with higher scores on the CCI and having a spouse of the patient as the secondary caregiver. A significant interaction occurred between the CCI and caregiver burden when having a spouse as the secondary caregiver, indicating the negative effect of the CCI on caregiver burden was greater when the spouse of the patient served as the secondary caregiver. In summary, the negative impact of patients' comorbidities on caregiver burden in adult–child primary caregivers was heightened when the secondary caregiver role was undertaken by the spouse of the patient with dementia. These results may inform programmes targeted to improve care arrangements for people with dementia and their caregivers.

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Quality of Life in Patients With Breast Cancer: The Influence of Family Caregiver's Burden and the Mediation of Patient's Anxiety and Depression

Previous research showed that family caregiver's perception of burden can influence patient's report on their quality of life (QoL). The present study investigated the relationship between the two variables by considering the role of patient's anxiety and depression. A total of 382 dyads of Chinese breast cancer patients and their family caregivers participated in this study. The results showed that the mediation model fitted the data well (χ = 49.859; df = 16; χ/df = 3.116; RMSEA = 0.05; TLI = 0.928; CFI = 0.959). It indicated that family caregiver's burden influenced patient's QoL negatively, and this relationship was partially mediated by patient's anxiety and depression.

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Sleep disturbances in caregivers of persons with dementia: contributing factors and treatment implications

Estimates suggest that there are more than 10 million adult caregivers of persons with dementia, two-thirds of who experience some form of sleep disturbance during the course of their caregiving career. Health care professionals are in the best position to detect and address this significant public health problem. Three major contributors to caregiver sleep disturbance are discussed in this paper: (1) the presence of caregiver disrupted sleep routines; (2) caregiver burden and depression; and, (3) the caregiver's physical health status. Successful treatment of a caregiver's sleep disturbance requires careful consideration of each of these contributors. We review and analyze the scientific literature concerning the multiple complex factors associated with the development and maintenance of sleep disturbances in caregivers. We provide a clinical vignette that illustrates the interplay of these contributing factors, and close by providing recommendations for clinicians and researchers treating and investigating the development and maintenance of sleep problems in family caregivers.

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Prevalence and Predictors of Distress, Anxiety, Depression, and Quality of Life in Bereaved Family Caregivers of Patients With Advanced Cancer

Objective: To investigate prevalence and predictors of postloss distress, depressive and anxiety symptoms, and quality of life among bereaved family caregivers of patients with advanced cancer.; Methods: Prospective multicenter study. Family caregivers (N = 160, mean age 56.8 years, 66% female) completed validated outcome measures (Distress Thermometer, Generalized Anxiety Disorder 7-item scale, Patient Health Questionnaire depression module 9-item scale, SF-8 Health Survey Questionnaire) 6 months after patient's discharge or death at specialist inpatient palliative care ward.; Results: Clinically relevant distress was observed in 82% with sadness (89%), exhaustion (74%), sleeping problems (68%), loneliness (53%), and sorrows (52%) being the most common distress-causing problems. Moderate/severe anxiety and depressive symptoms were observed in 27% and 35%, respectively. Compared to an adjusted norm sample, quality of life was significantly impaired with exception of "bodily pain" and physical component score. Preloss caregiving (odds ratio [OR] 2.195) and higher preloss distress (OR 1.345) predicted high postloss distress. Utilization of psychosocial support services (OR 2.936) and higher preloss anxiety symptoms (OR 1.292) predicted moderate/severe anxiety symptoms, lower preloss physical quality of life (OR 0.952), and higher preloss depressive symptoms (OR 1.115) predicted moderate/severe depressive symptoms.; Conclusion: Preloss mental burden showed to be a consistent predictor for postloss burden and should be addressed during palliative care. Future research should examine specific caregiver-directed interventions during specialist palliative care.

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Portrait of a Caregiver: Ethnodrama Development and Its Influence on Caregiver Well-Being

Background and Objectives: The majority of long-term care needs are placed upon family members who often receive minimal support. In this study, we collaborate with family caregivers to create an ethnodrama about their experience and assess outcomes of participation, including caregiver well-being.; Methods: Participants met over 4 months to discuss their roles as informal caregivers. Discussions were analyzed in a two-phase process and themes were developed into a script. Member checks included script review and revisions, culminating in viewing a professional performance of the play followed by a post-performance discussion and reflection. Data were gathered at six timepoints to assess caregiver well-being and longitudinal analysis was used to assess change during the course of the intervention.; Results: Twenty-two caregivers completed intervention activities. Participant reactions to the process evolved overtime, from an initial hesitance about what individuals had to offer leading to an acknowledgement of feeling heard and a desire to help others. Caregivers had high levels of burden and positive perceptions towards caregiving. Those with high levels of self-rated health had the lowest levels of burden and the most positive perceptions of caregiving.; Discussion and Implications: Developing an ethnodrama in partnership with caregivers is a unique and feasible method of caregiver support, mentoring, reflexivity, and meaning making. Promoting caregiver health early in the caregiving trajectory has the potential of reducing burden and elevating positivity towards caregiving.

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A Pilot Trial of Online Training for Family Well-Being and Veteran Treatment Initiation for PTSD

Introduction: Family members are important supports for veterans with Posttrauamtic Stress Disroder (PTSD), but they often struggle with their own distress and challenges. The Veterans Affairs-Community Reinforcement and Family Training (VA-CRAFT) website was designed to teach family members of veterans with PTSD effective ways to interact with their veterans to encourage initiation of mental health services as well as to care for themselves and improve their relationships. This article presents a pilot investigation of VA-CRAFT.; Materials and Method: Spouse/partners of veterans who had screened positive for PTSD but were not in mental health treatment were randomized to either use the VA-CRAFT website (n = 22) or to a waitlist control condition (n = 19) for 3 months. Veteran mental health service initiation was assessed posttreatment. Spouse/partner distress, caregiver burden, quality of life, and relationship quality were assessed pre and posttreatment. The study was approved by the Minneapolis VA Health Care System Institutional Review Board (IRB).; Results: Differences between groups on veteran treatment initiation were small (Phi = 0.17) and not statistically significant. VA-CRAFT participants reported large and statistically significantly greater decreases in overall caregiver burden (η2 = 0.10) and objective caregiver burden (η2 = 0.14) than control participants. Effects were larger for those with greater initial distress. Effects sizes for other partner outcomes were negligible (η2 = 0.01) to medium (η2 = 0.09) and not statistically significant. Postintervention interviews suggested that only 33% of the VA-CRAFT participants talked with their veterans about starting treatment for PTSD during the trial.; Conclusion: Results from this pilot trial suggest that VA-CRAFT holds initial promise in reducing caregiver burden and as such it could be a useful resource for family members of veterans with PTSD. However, VA-CRAFT does not enhance veteran treatment initiation. It may benefit from enhancements to increase effectiveness and caregiver engagement.

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Perspectives on decision making amongst older people with end‐stage renal disease and caregivers in Singapore: A qualitative study

Background: End‐stage renal disease (ESRD) is increasing both globally and in Asia. Singapore has the fifth highest incidence of ESRD worldwide, a trend that is predicted to rise. Older patients with ESRD are faced with a choice of haemodialysis, peritoneal dialysis or conservative management, all of which have their risks and benefits. Objective: This study seeks to explore perspectives on decision making amongst older (≥70) Singaporean ESRD patients and their caregivers to undergo (or not to undergo) dialysis. Design: Qualitative study design using semi‐structured interviews. Setting and participants: Twenty‐three participants were recruited from the largest tertiary hospital in Singapore: seven peritoneal dialysis patients, five haemodialysis patients, four patients on conservative management and seven caregivers. Results: While some patients believed that they had made an independent treatment decision, others reported feeling like they had no choice in the matter or that they were strongly persuaded by their doctors and/or family members to undergo dialysis. Patients reported decision‐making factors including loss of autonomy in daily life, financial burden (on themselves or on their families), caregiving burden, alternative medicine, symptoms and disease progression. Caregivers also reported concerns about financial and caregiving burden. Discussion and conclusion: This study has identified several factors that should be considered in the design and implementation of decision aids to help older ESRD patients in Singapore make informed treatment decisions, including patients' and caregivers' decision‐making factors as well as the relational dynamics between patients, caregivers and doctors. 

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Parkinson's Symptoms and Caregiver Burden and Mental Health: A Cross-Cultural Mediational Model

Informal caregivers are critical in the care of individuals with Parkinson's disease (PD) and spend substantial time providing care, which may be associated with negative caregiver outcomes such as burden and mental health issues. Although research in the United States and Europe has generally supported these relations, there is very limited research on PD caregiving in Latin America. The current study examined the following connections in a sample of PD caregivers from the United States (N=105) and Mexico (N=148): (a) PD-related impairments (motor and nonmotor symptoms) and caregiver burden, (b) caregiver burden and caregiver mental health, and (c) PD-related impairments and mental health through caregiver burden. Study results uncovered significant relations among PD-related impairments, caregiver burden, and caregiver mental health. Further, caregiver burden fully mediated the relation between PD-related impairments and caregiver mental health at both study sites. Findings highlight a number of important intervention targets for caregivers and families, including caregiver burden and mental health.

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Occupational therapy for people with dementia and their family carers provided at home: a systematic review and meta-analysis

Objective: To determine the effect of occupational therapy provided at home on activities of daily living, behavioural and psychological symptoms of dementia (BPSD) and quality of life (QOL) for people with dementia, and the effect on family carer burden, depression and QOL.; Design: Systematic review and meta-analysis.; Methods: Eight databases were searched to February 2018. Randomised controlled trials of occupational therapy delivered at home for people with dementia and their family carers that measured ADL, and/or BPSD were included. Two independent reviewers determined eligibility, risk of bias and extracted data.; Results: Fifteen trials were included (n=2063). Occupational therapy comprised multiple components (median=8 sessions). Compared with usual care or attention control occupational therapy resulted in improvements in the following outcomes for people with dementia: overall ADL after intervention (standardised means difference (SMD) 0.61, 95% CI 0.16 to 1.05); instrumental ADL alone (SMD 0.22, 95% CI 0.07 to 0.37; moderate quality); number of behavioural and psychological symptoms (SMD -0.32, 95% CI -0.57 to -0.08; moderate quality); and QOL (SMD 0.76, 95% CI 0.28 to 1.24) after the intervention and at follow-up (SMD 1.07, 95% CI 0.58 to 1.55). Carers reported less hours assisting the person with dementia (SMD -0.33, 95% CI -0.58 to -0.07); had less distress with behaviours (SMD -0.23, 95% CI -0.42 to -0.05; moderate quality) and improved QOL (SMD 0.99, 95% CI 0.66 to 1.33; moderate quality). Two studies compared occupational therapy with a comparison intervention and found no statistically significant results. GRADE ratings indicated evidence was very low to moderate quality.; Conclusions: Findings suggest that occupational therapy provided at home may improve a range of important outcomes for people with dementia and their family carers. Health professionals could consider referring them for occupational therapy.; Prospero Registration Number: CRD42011001166.

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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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A mixed methods inquiry of caregivers of U.S. veterans with sustained "invisible" injuries from Iraq/Afghanistan

An exploratory study of caregiver burden associated with family caregivers enrolled in the VA Caregiver Support Program who assist veterans with serious invisible injuries sustained post September 11, 2001. A mixed methods analysis was completed with a retroactive chart review of already collected data (172 participants) in addition to a phenomenological query of 16 participants. Results: T-tests resulted in a significantly higher caregiver burden score with caregivers who had children in the home (M = 6.84; SD = 3.21) versus those who did not (M = 5.57; SD = 2.75), t (160) = −2.36, p =.02. An ANOVA across caregiver role (parent, spouse, significant other and other) and the Zarit Burden Inventory (ZBI) resulted in a significant difference (F [3, 159] = 1.59, p <.01, with spousal caregivers having a significantly higher ZBI score (M = 6.83; SD = 3.10) than parental caregivers (M = 4.46; SD = 2.70). The phenomenological research resulted in 22 major themes (family adjustment, subjective demands, coping techniques, social support, VA/DOD, self-care, intimacy, role strain, financial resources, life course, obligation, rewards, isolation/loss of self, reciprocity, stigma, community resources, spiritual support, tools, hope, uncertainty, guilt, leash syndrome) which supported quantitative findings. Conclusions: Caregivers and their families had a difficult time adjusting post injury. Caregivers relied heavily on their own coping mechanisms to adapt to their new role and did not find social support to be helpful with caregiving. Spousal caregivers and caregivers with children in the home had more difficulty adjusting when compared with parental caregivers. 

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Male and Female Partner-Caregivers' Burden: Does It Get Worse Over Time?

Background and Objectives The general view is that partner-caregiver burden increases over time but findings are inconsistent. Moreover, the pathways underlying caregiver burden may differ between men and women. This study examines to what degree and why partner-caregiver burden changes over time. It adopts Pearlin's Caregiver Stress Process Model, as it is expected that higher primary and secondary stressors will increase burden and larger amounts of resources will lower burden. Yet, the impact of stressors and resources may change over time. The wear-and-tear model predicts an increase of burden due to a stronger impact of stressors and lower impact of resources over time. Alternatively, the adaptation model predicts a decrease of burden due to a lower impact of stressors and higher impact of resources over time. Research Design and Methods We used 2 observations with a 1-year interval of 279 male and 443 female partner-caregivers, derived from the Netherlands Older Persons and Informal Caregivers Survey Minimum Data Set. We applied multilevel regression analysis, stratified by gender. Results Adjusted for all predictors, caregiver burden increased over time for both men and women. For female caregivers, the impact of poor spousal health on burden increased and the impact of fulfillment decreased over time. Among male caregivers, the impact of predictors did not change over time. Discussion and Implications The increase of burden over time supports the wear-and-tear model, in particular for women. This study highlights the need for gender-specific interventions that are focused on enabling older partners to be better prepared for long-term partner-care. 

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Living with someone with an eating disorder: factors affecting the caregivers' burden

We focused on carers of subjects suffering from eating disorders (ED), and studied the characteristics that mostly expose them to high levels of stress, anxiety, depression and expressed emotion, favoring the accommodation of the family system to the cared person. We administered the accommodation and enabling scale for eating disorders (AESED) questionnaire, the family questionnaire (FQ) and the depression, anxiety and stress scale (DASS-21) questionnaire to 97 carers of 62 ED patients, and investigated the carer's characteristics associated with the scores in the three questionnaires. A personal history of ED, being the primary carer, and caring for a person with a diagnosis of anorexia nervosa are the characteristics that contribute most to aggravate the carers' burden in terms of stress, anxiety, depression, accommodation and enabling. Our findings may help doctors to provide effective support to caregivers and eventually improve the treatment of subjects with ED.

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Informal caregivers in Chile: the equity dimension of an invisible burden

Population aging is driving a process of increase in long-term care needs in Chile and many countries around the world. In this context, this article asks about the consequences of this increase in informal caregivers, emphasizing the inequity issues arising from these changes. Using the CASEN 2017 survey, caregivers are identified and matched to people with long-term care needs. Results show that most caregivers are women, and a large fraction of them are also elderly; this is similar to what has been found previously in developed countries. Caregivers have fewer opportunities than non-caregivers, which translates into lower income-generating ability and higher poverty. The nature of these tasks creates a vicious cycle in which people get trapped with increasing needs and fewer resources to meet them. Important differences arise between caregivers and the rest of the population. Even more concerning is that these disparities are avoidable to some extent, adding an equity dimension to the problem. This emphasizes the need for the generation of policies that will support caregivers and meet their needs.

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Informal care. European situation and approximation of a reality

Introduction: In European countries, the increasing of dependency affects individual, family-level and political aspects. The purpose is to analyse the effects on the health of informal carers living with a dependent person and the number of hours taken up by this care. Results between genders will be compared with other situations (time, energy commitments, influential socio-economic factors and differences among countries).; Materials/methods: This research is a cross-sectional study analysing secondary data and is carried out as part of the European Social Survey (ESS), 2014/2015. A total of 32,992 participants aged over 25 years took part in the ESS. Using an empirical framework, we have selected a simple logit model (logit) and a logit model with a multilevel structure ranking by country of residence (Xtmelogit).; Results: Being a carer is associated with a decrease in health indicators. Moreover, being a woman is related to an intense load of hours of care, no level of studies and living with difficulties. Living in southern or eastern European countries can also be considered a risk factor for carers. There are also important north-south political differences.; Political Implications: These results show the need to apply gender policies to reconcile and regulate the distribution of the income of economically more vulnerable families, as well as the provision of social services to help dependents.

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Impact of working situation on mental and physical health for informal caregivers of older people with Alzheimer's disease in Italy. Results from the UP-TECH longitudinal study

Objectives: This longitudinal study explores whether the working situation (no change in working hours despite care, reduction of working hours due to care or not working) moderates mental and physical health of informal caregivers of older people with Alzheimer's disease (AD) in Italy. Methods: Data from a sample of 146 caregivers of older people with moderate AD involved in the UP-TECH trial across three waves were analysed. Multivariate analyses were used to study the association between independent variables (caregivers' work situation) and dependent variables (caregivers' psycho-physical health). In a second model, elements relating to the caregiver, the cared-for individual and the caregiving situation were added as controls. Results: Being forced to reduce working hours due to care tasks or not being employed independently from care was negatively associated with informal caregiver's physical health, compared with working carers not experiencing reduction of working hours. In the extended model, this result was confirmed. In comparison with working carers not forced to reduce working hours, non-working carers experienced higher levels of caregiver burden and depression, however these results were not confirmed in the adjusted model. Other factors also emerged as important including weekly hours of care, the cared-for older individual's ADL/IADL scores and informal support network. Conclusions: Given the positive effect of labour force participation on health of informal caregivers of older people with AD, policy makers should promote their employment avoiding their forced reduction of working hours, while also putting measures in place to decrease the intensity of informal care provision.

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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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Family carers' perspectives of managing activities of daily living and use of mHealth applications in dementia care: A qualitative study

Aim: To examine the needs, barriers and challenges experienced by family carers of people with dementia concerning the management of their care recipients' functional disabilities, and their experiences and opinions of using mobile health (mHealth) applications in health information seeking.; Background: Functional disability is a significant problem among people with dementia and management can be challenging for family carers. Evidence suggests that mHealth applications can support knowledge needs of patients and families.; Design: A qualitative descriptive exploratory study.; Methodology: In-depth interviews were conducted with a purposive sample of family carers using a semi-structured interview guide. An inductive thematic analysis method was used. The COREQ reporting guideline was followed.; Results: Five spousal and five child carers participated in this study. Four key themes were identified: (a) Challenges faced that contribute to psychological distress and burden; (b) Essential role of support systems in dementia care; (c) Information and educational needs of family carers, and (d) Experiences and attitudes of mHealth applications as an educational and supportive resource.; Conclusion: Providing functional care is demanding, challenging and stressful, and leads to carer burden. The complexity of dementia is a barrier in the organisation of functional care and access to a support network is vital to care provision. The information needs of family carers can potentially be addressed through an mHealth application.; Relevance To Clinical Practice: This study provides important information on family carers' needs, and the barriers and challenges related to functional care for people with dementia. Findings from this study can assist nurses and other health professionals in the planning of educational and supportive programs for family carers. Furthermore, the use of mHealth applications could positively contribute to the delivery of these programs.

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An exploration of care‐burden experienced by older caregivers of adults with intellectual disabilities in Ireland

Accessible summary: ·Older family carers of an adult with an Intellectual disability were asked about how they sometimes feel when supporting another person.·Most carers felt a little stressed or strained.·Older carers felt less stressed than younger carers.·The value of supports that help carers was identified.

Background: People with intellectual disabilities are experiencing increased longevity, and in parallel, their family caregivers are also ageing. The literature identifies that these caregivers are at risk of burden. The aim of this study was to measure the level of caregiver burden among older carers of adults with intellectual disabilities in an Irish sample and to analyse the effect of socio‐demographic factors upon experiences of caregiver burden. Materials and Methods: Thirty caregivers completed a survey questionnaire. Data were collected based upon participants' self‐reports of burden using the Zarit Burden Interview (ZBI) and a socio‐demographic questionnaire. Data were analysed using SPSS version 24. Results: Over 57% of carers indicated a mild‐to‐moderate level of burden. Analysis indicated that younger caregivers experience significantly higher levels of burden, when compared to older caregivers. Conclusions: This study contributes to our understanding of burden among an Irish population of older caregivers supporting an adult with an intellectual disability. It identified that carers do experience burden. The importance of proactive assessments and supports for these caregivers was revealed. This study highlights a lack of Irish research in this area and may pave the way for future research which could build upon its findings.

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Experiencing the care of a family member with Crohn's disease: a qualitative study

Objectives: To explore the experiences of caregivers living with relatives affected by Crohn's disease (CD) in a context in which the family provides social support.; Design: A qualitative study based on a phenomenological approach was conducted through in-depth interviews.; Setting: Participants living in Alicante (Spain) were recruited Participants: Eleven family caregivers of people with CD were interviewed.; Methods: The in-depth interviews took place in the participants' homes and were audio recorded and then transcribed for a qualitative thematic analysis.; Results: Five themes and accompanying subthemes were identified: (1) adaptation to the caring experience, (2) dichotomy 'with or without me', (3) unending burden, (4) need for knowledge and control of the disease, and (5) getting used to CD and normalising life.; Conclusion: The findings contribute to an increase in the knowledge and comprehension of the experience of being the caregiver of a relative with CD, which could be useful for professionals towards improving the quality of the CD caring process. Due to the temporal dimension of CD with frequent bouts of exacerbation and remission, family caregivers must adapt and acquire skills during chronic illness evolution. Moreover, the lack of family caregivers' inclusion and follow-up within the Spanish health system makes them feel invisible and useless, which may contribute to caregivers' burdens.

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Effectiveness of an in-home respite care program to support informal dementia caregivers: A comparative study

Objectives: Dementia is a major public health problem with important physical, psychosocial, emotional, and financial consequences for patients, their caregivers, and society. Since patients prefer to be managed at home, extensive research has been conducted into effectiveness of psychosocial interventions to support informal caregivers. The aim of this study was to assess the effectiveness of an in-home respite care program. Methods: In a prospective quasi-experimental study, 99 dyads who received an in-home respite care program were compared at 6 months post-baseline, with 99 matched dyads receiving standard dementia care. Additionally, the short-term effect of the program was evaluated 14 to 15 days post-intervention. The primary outcome was caregiver burden. The secondary outcomes were: desire to institutionalize the patient, caregiver quality of life, and frequency and impact of behavioral problems. Mixed model analyses were performed to evaluate the impact of the intervention. Results: After 6 months, no significant difference on caregiver burden was observed, but intervention group caregivers had a significant lower desire to institutionalize the patient compared with control group caregivers (adj.diff = -0.51; p = .02). Shortly after the program, intervention group caregivers also had a significant lower role strain (adj.diff = 0.75; p = .05), and a lower burden on social and family life (adj.diff = 0.55; p = .05) compared with baseline. Conclusions: This study was the first comparative study to investigate effectiveness of an in-home respite care program to support informal caregivers of persons with dementia. The results partly confirm earlier positive findings from explorative studies. 

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The effect of psychosocial support on caregivers' perceived criticism and emotional over-involvement of persons with dementia: an assessor-blinded randomized controlled trial

Background: Many relatives of close family members suffering from dementia have taken on the caregiver role. While intervention studies have revealed promising results on caregiver burden, distress, and depression, there is a lack of knowledge about how caregivers' perceived relationship with their ill family member influences the burden of care. This study examined whether a psychosocial intervention influenced this perceived relationship from the caregivers' perspective. We also explored whether the caregivers' perception of the care receiver's attitude and behavior changed over time, and whether caregiver stress and mood differed following the intervention.; Methods: The participating caregivers and care receivers were randomly assigned to a psychosocial intervention comprising education about dementia, counselling and group sessions, or to treatment as usual. The study investigated caregivers' experience of expressed emotion using the Felt Expressed Emotion Rating Scale (FEERS), a self-report questionnaire that captures caregivers' perception of criticism (CC) and emotional over-involvement (EOI) exhibited by the family members with dementia.; Results: A total of 208 dyads were enrolled in the study. There were no significant differences between the intervention and control groups in the studied variables. Caregivers' perception of CC and EOI was low but fluctuated somewhat, whereas their mood and stress level were stable during the follow-up period.; Conclusions: According to the FEERS, the intervention did not influence caregivers' perception of CC and EOI, and there was no difference between the intervention and control groups regarding caregivers' perceived relationship. Despite the increased symptoms of dementia, caregivers' level of distress and mood remained stable, and they seemed to maintain a positive perception of the quality of their relationship with the care receiver.; Trial Registration: Clinical.Trials.gov Sept. 2009, NCT01287767.

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The Effect of California's Paid Family Leave Program on Employment Among Middle-Aged Female Caregivers

Background and Objectives This study examined the effect of a Paid Family Leave program in California (CA-PFL) on employment among middle-aged female caregivers. We also examined differences in the relationship between the availability of paid family leave (PFL) and employment in socioeconomic subgroups of midlife women. Research Design and Methods Data came from multiple years (2000‒2014) of the Current Population Survey (CPS) (N = 68,773 individuals). Applying a Difference in Differences (DiD) approach to removing potential selection biases related to program participation, we used a logistic regression to estimate the effects of PFL. Results There was a significant increase in the likelihood of working based on CA-PFL. This positive effect, however, was found only among the early middle-aged, the near-poor, and those had the highest level of education. Discussion and Implications Among the late middle-aged, caregiving burden may not affect decisions on whether to exit the labor market, and PFL may not significantly mitigate the well-known negative effects of intense and multiple caregiving roles (parents, spouse, and/or children with disabilities). Future studies should examine PFL effects and their correlates such as age-cohorts, caregiving intensity, and retirement patterns. The unexpected null findings of CA-PFL's effect on employment outcomes for the poor and those with low education levels suggests these vulnerable groups might not be able to fully benefit from the originally intended goal of the policy, instead being left more vulnerable compared to the near poor. Such a possibility increases the importance of focused research and policymaking attention for this group.

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

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

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Determinants of Burden and Satisfaction in Informal Caregivers: Two Sides of the Same Coin? The CUIDAR-SE Study

The aim of this study conducted in Spain was to analyze and compare burden, severe burden, and satisfaction among informal caregivers in relation to health-related quality of life (HRQoL), type and duration of caregiving, perceived social support, and use of social and health care services. We performed multivariate analyses to identify variables associated with caregiver burden, severe burden, and satisfaction with caregiving, stratified by gender. The results showed that secondary or third-level education, performance of ungratifying tasks, negative coping with caregiving, and more years providing care were associated with greater burden. Variables with protective effect were better perceived health of the person being cared for, better caregiver HRQoL, and high perceived social support. Women were 75% more likely to experience severe burden compared with male caregivers. Burden was reduced by high perceived social support in the case of women and by high caregiver HRQoL in the case of men. The main determinant of caregiving satisfaction for both men and women was perceived social support (OR = 3.11 and OR = 6.64). This study shows the need for interventions that promote gender equality and social support as a means of relieving burden and severe burden and improving satisfaction in both male and female caregivers.

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Delirium Burden in Patients and Family Caregivers: Development and Testing of New Instruments

Background and Objectives Delirium creates distinct emotional distress in patients and family caregivers, yet there are limited tools to assess the experience. Our objective was to develop separate patient and family caregiver delirium burden instruments and to test their content and construct validity. Research Design and Methods Two hundred forty-seven patients and 213 family caregivers were selected from an ongoing prospective cohort of medical-surgical admissions aged ≥70 years old. New patient and family caregiver delirium burden instruments were developed and used to measure the subjective experiences of in-hospital delirium. Delirium and delirium severity were measured by the Confusion Assessment Method (CAM) and CAM-Severity (long form). Results Both Delirium Burden (DEL-B) instruments consist of eight questions and are measured on a 0 – 40 point scale. Final questions had good clarity and relevancy, as rated by the expert panel, and good internal consistency (Cronbach's α =.82–.86). In the cohort validation, Patient DEL-B (DEL-B-P) was 5.1 points higher and Family Caregiver DEL-B (DEL-B-C) was 5.8 points higher, on average, for patients who developed delirium compared to those who did not (p <.001). Test–retest reliability of DEL-B-C at baseline and 1 month was strong (correlation =.73). Delirium severity was mildly-moderately correlated with DEL-B-P (correlation =.34) and DEL-B-C (correlation =.26), suggesting contribution of other factors. Discussion and Implications We created instruments to reliably measure and evaluate the burden of delirium for patients and their family caregivers. Although additional validation is indicated, these instruments provide a key first step toward measuring and improving the subjective experience of delirium for patients and their families. 

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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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Caregivers of hip fracture patients: The forgotten victims?

Introduction: The burden that family and friends assume when caring for hip fracture patients can negatively impact the caregiver's quality of life, relationships, and the decision to place the patient in a care facility. The purpose of this study was to evaluate the burden of caregiving for intertrochanteric hip fractures to better counsel patients and caregivers in order to prevent delayed admission to a care facility. Methods: A retrospective analysis of a prospectively gathered elderly hip fracture database identified 29 patients and their caregivers with complete 6 month follow-up. Caregiver burden and depression scales were administered to the primary caregiver in the immediate perioperative period (baseline), at 3 month follow-up, and at 6 month follow-up. At each time point caregivers reported the effects of caregiving on their finances, work hours, relationships, and their willingness to admit the patient to a long-term care facility. Results: At 6 month follow-up, <30% of caregivers reported negative effects on their finances, relationships, work hours, or intent to place the patient in care facility, while 77% endorsed cherishing their time spent as a caregiver. The number of caregivers with a high caregiver burden remained stable at 20% over the 6 month follow-up; these caregivers were more likely to have a depressed mood (p < 0.01), to consider placement of the patient into a long-term care facility (p < 0.01), and to have negatively affected finances (p = 0.03) and relationships (p < 0.01). Conclusions: High degrees of burden were experienced by 20% of caregivers of hip fracture patients. Caregivers with high caregiver burdens were more likely to consider placement of the patient into a long-term care facility. Risk factors for high caregiver burdens should be identified to optimize the quality of caregiving after discharge and to prevent delayed admission to a long-term care facility. Level Of Evidence: Level IV, case series.

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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 of Illness in Not Adequately Controlled Chronic Hypoparathyroidism: Findings From a 13-Country Patient and Caregiver Survey

Objective: To address knowledge gaps regarding burdens associated with not adequately controlled chronic hypoparathyroidism.; Design: Global patient and caregiver survey.; Study Populations: Patients with chronic hypoparathyroidism not adequately controlled on conventional therapy and their caregivers.; Measurements: Health-related quality of life (HRQoL) and health status were evaluated using the 36-item Short Form version 2 (SF-36 v2.0) and Five-Level EuroQoL 5 Dimensions (EQ-5D-5L) instruments, respectively. Hypoparathyroidism-associated symptoms were assessed by a disease-specific Hypoparathyroidism Symptom Diary and caregiver burden via the Modified Caregiver Strain Index (MCSI).; Results: Data were obtained from 398 patients and 207 caregivers. Patients' self-rated hypoparathyroidism-related symptom severity was none (3%), mild (32%), moderate (53%), or severe (12%). Per the Hypoparathyroidism Symptom Diary, patients reported moderate, severe, or very severe symptoms of physical fatigue (73%), muscle cramps (55%), heaviness in limbs (55%), and tingling (51%) over a 7-day recall period. Impacts (rated "somewhat" or "very much") were reported by 84% of patients for ability to exercise, 78% for sleep, 75% for ability to work, and 63% for family relationships. Inverse relationships were observed between patient self-rated overall symptom severity and HRQoL and health status assessment scores-the greater the symptom severity, the lower the SF-36 and EQ-5D-5L scores. Caregiver burden increased with patient self-rated symptom severity: none, 1.7 MCSI; mild, 5.4 MCSI; moderate, 9.5 MCSI; severe, 12.5 MCSI.; Conclusion: Patients with not adequately controlled hypoparathyroidism reported substantial symptoms and impacts. Greater patient symptom severity was associated with decreased patient HRQoL and health status assessments and increased caregiver burden.

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Burden of Care and Quality of Life in Home Caregivers of Patients With Stroke in Iran

The purpose of this study was to investigate the relationship between Burden of Care and Quality of Life in informal home caregivers of stroke patients in Iran. Also we were trying to explore the factors that affect the burden of care. In this cross-sectional study, we have selected 62 informal home caregivers of the patients admitted to "the stroke outpatient unit of the neurology clinic" of the central hospital in Semnan province, Iran, to take part in the investigation. We interviewed them using the Caregiver Burden Inventory and SF-36 Questionnaire for assessing their quality of life. There was a negative and significant correlation between different aspects of quality of life and burden of care. In the bivariate regression model, being married and having lower levels of education (minimum years of schooling) were associated with higher levels of the burden. Our study shows that increasing burden of care in informal home caregivers reduces the quality of life in all domains. Thus, the results of this study indicate that an increase in the burden of caregiving on caregivers lowers their quality of life in all aspects; especially, caregivers who provide care to their spouses encountered more burden. Therefore, these caregivers must be in the center of interest while planning to reduce the burden of care.

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

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

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Predictors of the personal benefits and positive aspects of informal caregiving

Objective: We investigated a) the number of reported benefits in an informal caregiving situation and b) the factors that predict the caregiver's (CG's) experience of benefits. Method: In this cross-sectional study, we computed univariate analyses and a multiple regression analysis using a benefit score as the dependent variable. Participants were 734 informal CGs who provide care for a person with chronic care needs in Germany. We examined the CG's self-reported physical complaints (GBB-24), subjective burden (CSI), depressive symptoms (PHQ-9), quality of life (CarerQoL), and benefits (BIZA-D). Results: Most of the CGs (87.1%) experienced benefits in at least one field. A higher experience of benefits was significantly associated with: more depressive symptoms (r = 0.10), higher burden (r = 0.17), longer duration of care (r = 0.07), longer daily care time (r = 0.21), more physical complaints (r = 0.15), and a good quality of the relationship between CG and CR (η = 0.13). In the multivariate regression analysis, a good relationship between the CG and CR (β =.157, P <.001), an increased amount of care time (β =.188, P <.001), and a higher level of burden (β =.167, P <.001) were associated with greater CG's benefits. Conclusion: CG benefits are a very important, often experienced, but less-explored construct in caregiving research. Benefits do not seem to be on the opposite end of the same continuum as negative aspects of caregiving. Benefits appear to be a nearly distinct dimension in informal care settings.

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65 The Health and Well-Being of Family Carers of Older People: An Exploratory Cross-Sectional Analysis

Background Family carers are critical to supporting older people to live well in their homes and demand for care at home is projected to increase dramatically into the future. The Irish state and health system, therefore, are dependent upon the supply of family care now and into the future. The health and well-being of older family carers, and carers providing care to older people in the community, is under-researched. Methods A combination of online and postal survey distribution achieved a convenience sample (N=1102) of carers from the membership and network reach of Ireland's largest family carer support and advocacy agency. Results Of those carers providing care to an older adult (n=341), 30% were aged over 64 and 28% reported mild to moderate carer burden. A further 36% reported moderate to severe burden. The average Zarit burden score for carers caring for an older adult was 44 (CI 42:45) and was 39 (CI 36:43) for family carers aged over 64. Among family carers of older adults, 72% reported diagnosis or treatment for physical illness and 42% reported diagnosis or treatment for mental illness. The most frequently cited source of worry for this group was their own health and wellbeing (73%) followed by lack of appropriate supports/services (68%). GPs were the most frequently cited source of support (64%) followed by a PHN (50%). Conclusion The study findings indicate that the lack of appropriate state supports and services for family carers is negatively impacting carer health and well-being. Family carers, including those providing care to older people and those who are themselves aged over 64, need to be consistently identified for intervention by health professionals, particularly GPs and PHNs. 

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77 Behind the Scenes: the Burden Experienced by Informal Carers of People with Dementia

Background Informal care is undoubtedly a vital to dementia care in Ireland. To date, little research has been carried out exploring the burden experienced by informal carers of people with mild to moderate dementia. The main aim of this quantitative study is to explore the burden experienced by caregivers, relative to dementia severity. The secondary aim is to identify risk factors which may be contributing to this perceived burden. Methods Fifty-two people with dementia(PwD) and their informal caregivers were recruited by convenience sampling, and data was collected as part of the 'CHESS' research trial. Data was collected during baseline assessments between April 2017 and September 2018. Dementia disease severity was measured using the Mini-Mental State Examination(MMSE), the Neuro-Psychiatric Inventory Questionnaire(NPI-Q), and the Disability Assessment for Dementia(DAD) scale. These outcome measures were then compared to levels of caregiver burden, which was measured using the Zarit-Burden Interview(ZBI). These comparisons were completed using Spearman's correlations. Socio-demographic characteristics of both the carer and PwD were then compared to caregiver burden, using Mann-Whitney and Kruskal-Wallis tests. Results The results of the study substantiate that behavioural disturbances(p=0.000) and increasing disability(p=0.022) of the PwD are associated with higher carer burden. The study also identified potential non-modifiable risk factors for increased carer burden. These include spousal relationship to the PwD(p=0.096), older caregiver age(p=0.208), female carer gender(p=0.083) and higher educational attainment of the caregiver(p=0.035). Some of these differ from factors influencing burden in other international populations. Conclusion This preliminary analysis is the first study of its kind to be carried out in Ireland. It sheds light on potential predictors and risk factors for carer burden and shows need for future research to be carried out in this area. Such research would help to clarify interventions which could minimise the prevalence of the burden experienced by informal caregivers.

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Mental health of carers in Wales: a national population survey

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

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Defining the concept of family caregiver burden in patients with schizophrenia: A systematic review protocol

Background: Since the deinstitutionalization policy, in psychiatric hospitals, the care of patients with schizophrenia was left to their families which has been imposing a heavy burden on them. Family caregiver burden could have consequences for caregivers, patients, and the society. There is very little consensus on the definition and dimensions of the caregiver burden, which leads to a lack of consistency in the results of research. Thus, the present study was aimed to redefine the family caregiver burden of patients with schizophrenia. Methods: The databases PubMed, Scopus, Web of Science, MEDLINE (Via Ovid), ProQuest, SCI, Magiran, SID, and IranDoc will be searched from 1940 to 2018 using subject headings and appropriate terms in both Farsi and English languages. Also, gray literature and the reference list of included articles will be used to offer an appropriate definition of the family caregiver burden in patients with schizophrenia. Two independent reviewers will participate in study selection, data collection, and quality assessment steps. The result will be presented in tabular form, and meta-synthesis will be performed. Discussion: The result of this systematic review will help present the comprehensive definition of the family caregiver burden in patients with schizophrenia according to its evolutionary trend. Systematic review registration: PROSPERO CRD42018099372. 

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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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Interventions to support family caregivers of people living with dementia in high, middle and low-income countries in Asia: A scoping review

Introduction Despite increasing numbers of persons living with Alzheimer's disease and Alzheimer's-related dementias (AD/ADRD) in Asia, particularly in low-income countries (LIC) and middle-income countries (MIC), surprisingly little is known about the current state of the evidence for family caregiver interventions. The objectives of this scoping review were to: (1) describe the evidence for efficacy of family dementia-caregiver psychosocial interventions in Asian countries, (2) compare evidence across LIC, MIC, and high-income countries (HIC), and (3) characterise cultural adaptions to interventions developed outside Asia. Methods The inclusion criteria included: (1) conducted in Asia (2) included an intervention delivered to a family caregiver of a person living with AD/ADRD, (3) reported quantitative outcomes for the family caregiver and (4) published in a peer-reviewed journal with full text available in English. Results Thirty intervention trials were identified meeting inclusion criteria and all reported statistically significant (p<0.05) improvement in one or more caregiver outcomes. Interventions usually included multiple components. The most frequently reported outcomes (ie, by ≥20% of studies) were caregiver depression, burden, quality of life and self-efficacy. Overall, 26 (87%) of the studies were conducted in HIC in Asia, primarily in Hong Kong SAR-China and Taiwan, and only 4 (13%) in LIC and MIC in Asia. Seven studies (23%) used interventions developed in USA and several described cultural adaptations. Conclusion This scoping review found substantial evidence, particularly from high-income Asian countries, that a wide range of interventions improve AD/ADRD family caregiver outcomes. However, critical knowledge gaps exist, particularly for LIC and MIC in Asia, where the number of persons with dementia is numerically largest and projected to increase dramatically in coming decades. The field could also benefit from more detailed descriptions of the process and types of cultural adaptations to interventions. 

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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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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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Cutoff of the Zarit Burden Interview in predicting depression and anxiety

Background: The purpose of the present study was to determine a statistically valid cutoff score for the Zarit Burden Interview (ZBI) in order to identify family caregivers at risk for depression and anxiety to guide for further assessment and future intervention. Methods: The ZBI, the Patient Health Questionnaire (PHQ), and the Generalized Anxiety Disorder Scale (GAD) were administered to a representative community sample of 327 family caregivers of schizophrenia individuals. A ZBI cutoff score was determined using three different statistical methods: tree-based modeling, K-means clustering technique and linear regression, followed by contingency analysis and receiver operating characteristic (ROC) curve to compare between depression and anxiety scale scores with the ZBI cutoff. Results: Findings suggest that a cutoff score of 48 in ZBI has significant predictive validity for identifying caregivers at risk for both depression and anxiety. A ZBI cutoff of 48 showed sensitivity of 73% for PHQ and 70% for GAD, specificity of 80% for PHQ and 79% for GAD, PPV (positive predictive value) of 75% for PHQ and 73% for GAD, NPV (negative predictive value) of 78% for PHQ and 76% for GAD. Conclusions: This cutoff score would enable health care providers to assess family caregivers at risk and provide necessary interventions to improve their quality of life in this important role. 

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Photojournalism-Based Intervention Reduces Caregiver Burden and Depression in Alzheimer’s Disease Family Caregivers

Purpose: Art interventions have demonstrated holistic benefits for persons living with dementia and their caregivers. In this article, we describe the results of a pilot photojournalism program for 10 unpaid caregivers of persons living with dementia, with respect to caregivers’ experience in the program and their psychological well-being. Design: Caregivers participated in four sessions led by a professional photojournalist who taught principles of photography. Between the sessions, caregivers took photographs that represented what caregiving meant to them using digital cameras provided in the program. During the sessions, instruction was interspersed with discussion of caregivers’ photographs. Method: Caregiver burden and depressive symptoms were measured pre- and postprogram. Qualitative exploration included sessions’ observations, viewing caregivers’ photographs, and recording caregivers’ accompanying comments. Findings: For participants with pre- and postprogram data, caregiver burden decreased significantly (p =.037). For caregivers with pre- and postprogram data, depressive symptoms decreased nonsignificantly (p =.066). Clinically meaningful reductions in caregiver burden and depressive symptoms were attained. Qualitative findings highlighted caregivers’ strong engagement with the project, the facilitator, and other participants, and reflection on multiple aspects of their experience. Conclusions: This intervention helped caregivers creatively communicate their experience and demonstrated efficacy in the improvement of caregivers’ psychological well-being. 

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Informal caregivers of people undergoing haemodialysis: Associations between activities and burden

Background Recent studies indicate that informal caregivers provide support to family members who are undergoing haemodialysis although the amount and type of activities provided and the burden of this is not well‐known. Objectives To analyse the burden and support activities of informal caregivers caring for adults receiving haemodialysis. Methods A cross‐sectional study recruited 178 adult informal caregivers (family members or close friends) of patients who had been undergoing haemodialysis for more than three months. Caregiver burden was measured by the Zarit Caregiver Burden Scale (ZCBS). Difficulty and time‐spent on caring tasks were assessed using the Oberst Caregiver Burden Scale (OCBS). Demographic characteristics were also collected. Results Most informal caregivers were female (55.6%) between 30 and 60 years of age (66%) and were a spouse of the person receiving haemodialysis. Overall, informal caregivers reported a high level of burden in caring (M = 40.15, standard deviation [SD] = 10.46) with 80.9% identifying the level as severe. However, the caring activities were perceived as slightly difficult (M = 24.5, SD = 8.81) and not requiring much time (M = 29.47, SD = 8.75). Predictors of greater informal caregiver burden were having their own health problems, greater time required to provide care, and doing more difficult tasks (R2 = 0.43, p < 0.01). Conclusion While the caregiving activities were not reported to take much time, there was a high level of burden on informal caregivers. Renal nurses are ideally placed to assess for caregiver burden and to provide education and support to them.

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Caring for the informal cancer caregiver

PURPOSE OF REVIEW: Informal cancer caregivers play a vital role in the physical, functional, and emotional well being of cancer patients. However, the majority of informal caregivers are not prepared for their caregiving role. We reviewed and synthesized the recent literature (last 18 months) and focused on research in the following understudied areas: technology-driven interventions for informal caregivers; informal caregivers of older adults with cancer; interrelationship between informal caregiver and dyadic outcomes; and research priorities and guidelines to improve informal caregiver support. RECENT FINDINGS: Studies focused on technology-driven informal caregiver interventions, with evidence of good feasibility and acceptability with benefits for burden and quality of life (QOL). Studies also focused on QOL for caregivers of older adults with cancer. Finally, research priorities and clinical guidelines were established through Delphi survey studies. SUMMARY: Despite the substantial evidence on informal cancer caregiving, more research is needed to further characterize caregivers at high risk for burden, explicate interrelationships between caregiver/patient outcomes, and test innovative and scalable interventions. Studies are also needed to understand the specific needs of informal caregivers in cancer surgery, an understudied treatment population.

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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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The impact of the absorbent products distribution system on family caregivers of older people with incontinence in Italy: Perception of the support received

Background: Urinary incontinence is a chronic, age-related disorder, likely to increase in the future due to global population ageing. In Italy, as in most countries, older people with incontinence are often cared for by family caregivers, whose burden might be worsened by the perception of receiving an inadequate support, due to the lack of customized services. The aim of this study was to evaluate the impact of the absorbent products distribution method on family caregivers' perception of the support received. Methods: The study compared the distribution of pads to homes and in pharmacy via a survey reaching 101 family caregivers of older people with incontinence living in two geographical areas of the Marche Region (Central Italy) with different distribution systems. The association between "Quality of perceived support" (the outcome variable) and two types of absorbent products delivery methods (i.e. pharmacy and home distribution) was analysed by means of a general linear model. Results: Findings show that family caregivers receiving pads at home (HODs) perceived a higher support than those gaining them at the pharmacy (PHADs) (respectively 68.1% vs 35%). The association between perceived support level and distribution system remained even after correction for confounding factors. 70.2% of PHADs reported "Poor well-being", versus only 53.7% of HODs. The latter are more satisfied with the type of products distribution and thus less inclined to experiment different systems for the supply of products for the urinary continence (e.g. by voucher). The results are virtually reversed among PHADs and the difference is statistically significant (p < 0.001). Conclusions: When family caregivers feel supported by a more customized service delivery system, their perception of the care-related burden is mitigated. Thus, it is important to consider the needs of both family caregivers and cared for older people, and not only of the latter for designing a more suitable distribution of absorbent products. The best solution could be leaving end-users the freedom to choose how they want to get products (e.g. voucher or personal budget). This requires a reorganization of the current pads delivery systems adopted by the Marche and by other Italian Regional Health Systems. 

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Mediating effect of social support on the relationship between resilience and burden in caregivers of people with dementia

Objective: This study examined different predictive factors of burden in a sample of family caregivers of patients with dementia (PWD). In particular, the influence of social support and resilience on burden was tested, considering potential mediation effects. Methods: A total of 283 primary and family caregivers in Spain were evaluated using a standardized protocol to assess sociodemographic characteristics, clinical state of PWD and specific variables of caregiving and care providers. Results: The role of caregiver of PWD was more common in women, reporting significantly higher levels of burden than men. Resilience and social support accounted for most of the variance in burden. Furthermore, social support partially mediated the relationship between resilience and burden in caregivers. Conclusions: Caregivers’ resilience and social support are protective factors against burden in caregivers of PWD. Both factors should be considered for tailored interventions aimed at reducing the health costs of burden in this population. 

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Perception of social support and psychotic symptoms among persons with schizophrenia: A strategy to lessen caregiver burden

Background: Improving patients’ perception of social support is significant not only for their re-adaptation to life but also for alleviating caregivers’ burden. Aim: This study aims to examine an integrated model regarding social support, psychotic symptoms and caregiver burden. Methods: Persons with schizophrenia (N1 = 300) and their family caregivers (N2 = 300) in Xinjin County, Chengdu, China, completed the survey to report their demographics, patients’ perception of social support (Duke Social Support Index), psychotic symptoms (Positive and Negative Syndrome Scale) and caregiver burden (Burden Scale for Family Caregivers, Short Version). Structural equation modelling was utilised to test the proposed model. Results: The degree of caregiver burden differed significantly within subgroups of patients’ gender and education, as well as caregivers’ gender, education and employment. Caregiver burden was negatively related to patients’ age and household income. Social interaction partially mediated the relationship between instrumental and subjective social support (total effect = 0.451, p &lt;.01). Subjective social support fully mediated the impact of social interaction on psychotic symptoms (total effect = −0.099, p &lt;.05). In the final model, instrumental social support was positively associated with social interaction (p &lt;.001) and increased subjective social support (p &lt;.05). Increased subjective social support showed correlation with a lower degree of psychotic symptoms (p &lt;.01), which was related to a lower level of caregiver burden (p &lt;.001). Conclusion: This study shows the associations of patients’ social support with psychotic symptoms and caregiver burden. Culture-specific psychosocial interventions should be provided for both patients and caregivers to enrich external support and reduce psychotic symptoms and caregivers’ burden within the health care environment.

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Disease-related stressors of caregiving burden among different types of family caregivers of persons with schizophrenia in rural China

Background: Little is known about the impacts of schizophrenia on different types of caregiving burden. Aim: This study aims to examine how the severity of schizophrenia, social functioning and aggressive behavior are associated with caregiving burden across different kinship types. Method: The analytic sample included 300 dyads of persons with schizophrenia and their family caregivers in Xinjin, Chengdu, China. The 10th edition of the International Classification of Diseases (ICD-10) was utilized to identify the patients, whose symptom severity, social functioning and aggressive behavior were measured. Caregiving burden was estimated using the Burden Scale for Family Caregivers–short (BSFC-s). Results: A higher level of burden was significantly associated with female caregivers, larger family size, lower income, worse symptoms, poorer functional status and more aggressive behaviors. Parent caregivers showed greater burden if the patients had better functioning of social interest and concern or more aggression toward property. Mother caregivers showed greater burden than fathers. Spouses tended to perceive greater burden if the patients had better marital functioning, poorer occupational functioning or more aggressive behaviors toward property. Patients attacking others or a father with schizophrenia was related to a higher burden of child caregivers. A heavier burden of other relatives was correlated with patients’ more verbal aggression and self-harm. Conclusion: This study shows the distinct impacts of disease-related factors on the caregiving burden across different kinship types. Our findings have implications for health-care professionals and practitioners in terms of developing more targeted family-based or individualized intervention to ameliorate burden according to kinship types and deal with behavioral and functional problems in schizophrenia. 

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Predictors of caregiver burden after stroke in Nigeria: Effect on psychosocial well-being

Background: Family caregivers (CGs) are critical to the care and recovery of stroke survivors (SSs), particularly in the community. However, little is known about their psychosocial well-being, especially in developing countries. In this study, we assessed CG burden, psychiatric morbidity, quality of life (QoL), and predictors of burden. Materials and Methods: We recruited 150 dyads of CGs/SSs from two outpatient clinics in Nigeria. Data were collected through sociodemographic/clinical questionnaire, the Zarit caregiver burden interview, the World Health Organization QoL-BREF, and the Mini-International Neuropsychiatric Interview. Disability in SSs was graded with the Modified Rankin Scale. Results: Compared to CGs who were mostly females (86.7%) with a mean age of 42.8 (±12.6) years, SSs were older with a mean age of 61.6 (±12.5) years and were mainly males (62.7%). The mean CG burden score was 31.6 (±10.5) and eight in 10 CGs, 124 (82.7%) reported moderate-to-severe burden scores. Mental disorders in the form of depression and/or anxiety disorders were diagnosed in 26 (17.3%) CGs. Significant predictors of high-burden scores (P < 0.05) were incontinence in SSs, psychological symptoms in SS, worse poststroke disability, and performance of more CG tasks (B = 8.3, 4.5, 3.9, and 3.5, respectively). CGs QoL scores correlated negatively with burden scores, with medium-to-large effect sizes (r =-0.4-0.6) across QoL spheres. Conclusion: In this study, psychosocial burden in CGs was indexed by various determinants and impacted QoL negatively. Given the integral role of CGs to the care of SSs in the community, mental health services, psychosocial support programs, and stratification based on known vulnerability factors seems viable options for intervention, assessment, and planning. 

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A swift travel to stormy shore: Burden and distress experience by caregivers availing neuro-rehabilitation services

Background: Persons with neurological conditions predominantly receive their care from informal caregivers in India. The day-to-day caring of these persons requires tireless effort, energy, and empathy, and can often impact the quality of life of caregivers. In this study, we assess the impact of caregiving on the quality of life of informal caregivers. Materials and Methods: Fifty caregivers of patients with neuro-rehabilitation needs admitted in the neuro-rehabilitation ward of our hospital were recruited for this study. A descriptive research design, burden assessment schedule, and a self-reporting questionnaire were used to assess the distress level. The data collected were analyzed using descriptive, parametric, and nonparametric statistics. Results: Of the 50 caregivers recruited, 32 were female and 28 were male. The caregivers in our cohort were predominantly over 40 years of age. Thirty caregivers were from nuclear family and 36 families had below poverty line card. Majority of the caregivers reported physical and mental health burden due to their caregiving role. This was followed by need for external support to facilitate their caregiving role. Overall, the burden perceived by the caregivers ranged from moderate to severe. Conclusion: The caregivers come from diverse backgrounds, but nonetheless, they experienced significant physical and emotional burden while caring for the ill person at home. Providing adequate training and socioeconomic support to the caregivers may be helpful in reducing their burden. 

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The effectiveness of a life story program on stress reduction among Chinese American family caregivers of older adults

The study aims to examine the effectiveness of a life story program on reducing Chinese American family caregivers’ stress due to the burden of caregiving. This study conducted a quasi-experimental pre-posttest research design. A simple one-way ANOVA was performed to test the significance of the intervention on caregivers’ burden. The life story was not found to be directly statistically significant on reducing burden. However, through the life story intervention, it was discovered that among Chinese American family caregivers their perceived lower dependency of the care receiver, fewer needs of the care receiver and unknown time frame of continuation of care were statistically significant on the burden scale. The life story intervention improved family caregivers’ insight and judgment on the effect that care receivers’ needs and demands had on their continuation of caregiving. 

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Predictors of caregiver burden and care costs for older persons with dementia in Taiwan

Objectives: As a degenerative disease, the progression of dementia needs continued care provision and poses both psychological and financial burden for family caregivers of persons with dementia (PWD). This study seeks to compare predictors of care costs and caregiver burden, and to identify modifiable factors that could alleviate the burden faced by dementia caregivers. Methods: This study interviewed 231 PWD-caregiver dyads in a dementia clinic at a teaching hospital in southern Taiwan in 2013. A follow-up study was conducted a year later, and 167 dyads completed the second interview. Data collected included PWD characteristics, caregiver characteristics, relationship to PWD, and social support to caregivers. Caregiver burden was measured with the Zarit Burden Interview instrument. The association between each predictor variable and cost of care and caregiver burden scores was examined using linear mixed models. Results: Predictors of care costs were found to be different from predictors of caregiver burden: functional declines measured by Katz's activities of daily living (ADL) scale were associated with total cost as compared to behavioral disturbance measured by Neuropsychiatric Inventory (NPI), which showed no impact on care costs. However, NPI was a significant predictor of caregiver burden. Caregivers who were better-off financially also reported significantly lower caregiver burden. Conclusions: Since predictors of care costs were different from the predictors of caregiver burden, providing training to caregivers in addressing PWD's behavioral disturbance and proving financial assistance to low income caregivers could be effective in reducing caregiver burden.

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Caregivers of individuals with schizophrenia: Who are they and what are their challenges?

Purpose of review To better understand the overall burden of schizophrenia, we aimed to explore informal caregivers' experiences by evaluating the current evidence on caregiver and patient characteristics, the type of care provided by caregivers, and the impacts of caregiving on caregivers' lives. Recent findings Caregivers provide direct care, assistance with activities of daily living, and emotional, social, and financial support to individuals with schizophrenia. Increased duration of illness and of care, severe or persistent schizophrenia symptoms, criticism of the care recipient, financial burden, and patient disability intensify caregiver burden. Caregivers of individuals with persistent symptoms often feel overwhelmed, stressed, drained, burdened, frustrated, or angry. Financial impacts of caregiving include treatment costs for care recipients, providing financial support, and lost productivity and income. Depression and anxiety are common health impacts for caregivers, who also have increased physical healthcare resource use relative to healthy controls. Caregiver burden is reduced by formal support programs to improve caregivers' stress management and coping skills and informal sources of social support. Summary Targeted efforts to improve access to care and provide additional support for caregivers are needed to alleviate caregiver burden and improve outcomes for individuals with schizophrenia. 

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Investigation on the Status and Determinants of Caregiver Burden on Caring for Patients with Chronic Wound

Objective: To investigate the caring burden and its determinants of primary informal caregiver of patients with chronic wound. Approach: A prospective cross-sectional study of 132 pairs of chronic wound care recipients and their informal caregivers was included. The characteristics of patients and their informal caregivers as well as caregiver burden assessment by the caregiver burden inventory (CBI) were measured. Single factor analysis and multiple regression analysis were carried out to explore the independent determinants of caregiver burden on caring for patients with chronic wound. Results: Most of the caregivers were female with mean age of 54.57 ± 13.35 years, and 58.3% of the caregivers were adult children. The mean CBI score was 34.21 ± 9.69 at a medium level. The following variables increased the CBI scores of caregivers: long caring time per day for patients, powerlessness status of patients, insufficient self-efficacy, and social support of caregivers, the model was able to explain 67.5% of variance in caregiver burden (F = 47.167, p = 0.000, R2 = 0.675, adjusted R2 = 0.660). Innovation: Caring burden of patients with chronic wound as a key consideration of patient-centered wound care has received relatively little attention. In this study we report the status of caring burden and reveal its determinants of primary informal caregiver of patients with chronic wound. Conclusion: Wound professionals are suggested to pay attention to the caregiver burden of patients with chronic wound and develop family-centered intervention support service system according to the determinants of caregiver burden to alleviate the caregiver burden.

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