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Background: Home-based care (HBC) services have gained global attention for their potential to reduce caregiver burden among informal caregivers of persons with dementia (PwDs), who experience high caregiving intensity. However, research on HBC and its effects on dementia caregiving in China remains limited., Methods: Data were collected from primary caregivers of PwDs in Jiangsu Province, China. Caregiving intensity and HBC utilization were measured using self-developed instruments. Caregiver burden was assessed by The Burden Scale for Family Caregivers-short. Factor analysis was employed to decompose HBC services. Hierarchical multiple regression analysed the moderating effects of HBC on the relationship between caregiving intensity and burden., Results: A community sample of 318 caregiver and PwDs dyads was included. Caregivers averagely aged 62.16 years, with 61% being female, 84% not employed, and 66.2% having low income. PwDs aged 77.45 years averagely, with 52.8% being female and an average behavioural problems score of 42.27. Caregivers averaged 15.19 on response measures. The number and time spent on ADL-based tasks were positively associated with caregiver burden (β = 0.26, p < .001; β = 0.16, p < .01). However, attendance and time of supervision tasks were not significant predictors of burden. HBC services in China comprised four dimensions: Referral service, Household care, Skilled care, and Mental health service. While these did not directly predict caregiver burden, they moderated the associations between ADL-based tasks and caregiver burden (β=-0.25, p < .001; β=-0.24, p < .001; β=-0.23, p < .001; β=-0.20, p < .001), between time of ADL-based tasks and caregiver burden (β=-0.17, p < .001; β=-0.18, p < .001; β=-0.17, p < .001; β=-0.15, p < .01), and between the attendance at supervision tasks and caregiver burden (β=-0.11, p < .05; β=-0.20, p < .001; β=-0.17, p < .001; β=-0.17, p < .001). Only Referral service buffered the relationship between supervision time and caregiver burden (β = -0.13, p < .01)., Conclusion: Informal caregivers of PwDs face high caregiving intensity and burden. HBC services may moderate this relationship, with different services playing varying roles. Further research is essential to explore the impact of supervision levels and develop effective strategies to enhance HBC services for dementia caregiving in China., (© 2024. The Author(s).)

Background: Serious mental illness (SMI) is a debilitating medical condition that causes stress and challenges for the family caregivers (FCs) of affected patients, increasing their caregiver burden (CB). This situation can activate attachment styles (AS) and trigger negative emotions, further contributing to CB. Given that AS and cognitive-emotional regulation (CER) can affect the CB of FCs of patients with SMI, the aim of this study was to evaluate the relationship between CB with AS, and CER among the FCs., Methods: This cross-sectional descriptive-correlational study was carried out in May-November 2022. Participants were 278 FCs of patients with SMI consecutively recruited from Roozbeh leading psychiatric hospital, Tehran, Iran. Data were collected using a patients' demographic and clinical characteristics questionnaire, an FCs' demographic characteristics questionnaire, the Attachment Style Questionnaire, the Cognitive Emotion Regulation Questionnaire, and the Burden Scale for Family Caregivers, and were analyzed using the SPSS software (v. 16.0)., Results: CB had significant inverse relationship with secure AS (r = - 0.262) and significant positive relationship with fearful AS (r = 0.194) and dismissive AS (r = 0.242) (P < 0.01). Moreover, CB had significant inverse relationship with adaptive CER strategies and significant positive relationship with maladaptive CER strategies (P < 0.001). Regression analysis also showed that CB had significant relationship with secure AS and catastrophizing, rumination, self-blame, and positive refocusing CER strategies (P < 0.05)., Conclusion: This study concludes that AS and CER can impact CB. There is a negative relationship between secure AS and CB, as well as between adaptive CER strategies and CB. Conversely, there is a positive relationship between avoidant AS and increased CB, as well as between maladaptive CER strategies and CB. It is recommended to adopt strategies that promote the use of secure AS and adaptive CER among the FCs of patients with SMI., (© 2024. The Author(s).)

Background: Annually, about 4000 US children undergo a tracheostomy procedure to provide a functional, safe airway. In the hospital, qualified staff monitor and address problems, but post-discharge this responsibility shifts entirely to caregivers. The stress and constant demands of caregiving for a child with a tracheostomy with or without ventilator negatively affect caregivers. The aims of the study are to relieve the burden and stress experienced by caregivers at home, improve safety and outcomes for children post-discharge, and identify facilitators and barriers to implementation of comprehensive pediatric discharge programs., Methods: The Boosting REsources and cAregiver empowerment for Tracheostomy care at HomE (BREATHE Study) is a pragmatic two-arm, randomized trial with six sites across the US. Caregivers of a child with a tracheostomy are randomized to comparator ("Trach Me Home") or intervention ("Trach Plus"). The Comparator arm is the current gold standard focusing on caregiver education, technical skill building, and case management. The Intervention arm contains all elements of the Comparator plus educational resources, social support and communication with the outpatient pediatrician. Caregivers will complete three surveys: baseline (pre-discharge), 4-week and 6-month post-discharge. Outpatient pediatricians will complete a survey to assess self-confidence in caring for a child with tracheostomy and satisfaction with discharge communication. Interviews with clinicians and staff will identify facilitators and barriers to implementation. The study will examine whether the Intervention arm leads to lower caregiver burden, lower readmission rates and higher pediatrician satisfaction than Comparator arm., Discussion: The BREATHE Study will advance our understanding of how hospitals can support caregivers with a child with a tracheostomy as they resume life, work, and family activities after discharge., Trial Registration: Registered on clinicaltrials.gov (NCT06283953). February 28, 2024., (© 2024. The Author(s).)

Background: Chronic renal failure poses a significant global health challenge, exerting a substantial burden on both patients and their caregivers. Hemodialysis, a common treatment for end-stage renal disease, imposes extensive physical, emotional, and financial pressures on caregivers, often leading to a high care burden. This study uniquely examines the impact of peer support groups on reducing the care burden among caregivers of patients receiving hemodialysis in an Iranian healthcare setting, an aspect that has not been extensively explored before., Methods: A parallel-controlled clinical trial was conducted involving 60 caregivers, divided into intervention and control groups. The intervention group participated in an 8-session peer support program tailored to their identified needs, including coping with stress, social isolation, and financial challenges. The Zarit Care Burden Interview Scale was used to measure care burden before and after the intervention., Results: The study revealed statistically significant reductions in care burden, particularly in physical, social, and emotional dimensions, among caregivers in the intervention group compared to the control group. The total care burden score showed a marked decrease, indicating the effectiveness of the peer support intervention. While economic challenges remained a concern, the intervention had a limited impact in this domain., Conclusion: This study demonstrates that peer support groups significantly alleviate the care burden experienced by caregivers of patients receiving hemodialysis, improving their well-being across several dimensions. The findings highlight the importance of integrating peer support strategies into healthcare programs for chronic disease management and underscore the need for supplementary economic support measures to comprehensively address caregivers' needs. Future research should explore the scalability and long-term sustainability of such interventions and address the unique economic challenges faced by these caregivers., Trial Registration: This study was registered in the Iranian Registry of Clinical Trials (IRCT) under the registration number IRCT20220724055540N1 on 11/08/2022., (© 2024. The Author(s).)

Background: Spinal muscular atrophy is a rare neurodegenerative disorder in children which leads untreated to muscle wasting, respiratory impairments, and a shortened life expectancy. Parents as primary caregivers are often physically and psychologically burdened. In recent years, new and promising treatment options have been approved, but it remains unclear if they have an impact on the psychosocial situation of affected families., Objectives: The aim of this study was to explore the views and experiences of parents as informal caregivers of children with SMA in the course of the disease against the background of new treatment options (Spinraza® or Zolgensma®)., Methods: We conducted qualitative interviews with 27 parents of children with SMA treated with Spinraza® and Zolgensma® from April to September 2020. The analysis was done using thematic analysis and reported according to the COREQ criteria., Results: The data analysis resulted in three main themes: a) caregiver burden and negative consequences for families, b) resources and protective aspects, c) psychosocial care needs. The results are discussed against the background of new treatment options and previous models of supportive care needs. Parental caregivers of affected children face multiple burdens in different stages of the child's disease progression., Conclusion: Although new treatment options for SMA showed observable effects for most parents, the main caregiver burden and reported symptoms were attributable to the overburdening care tasks. To unburden families, more screening for unmet needs, family-centered help services, professional caregivers, childcare, and sufficient financial support are needed., (© 2024. The Author(s).)

Background: The objective of the current study was to assess the effectiveness of stress management training, grounded in Lazarus and Folkman's stress management model, on reducing caregiving burden and perceived stress among family caregivers of patients on hemodialysis., Methods: This two-group clinical trial study was conducted in parallel design among 60 family caregivers of patients on hemodialysis in 2023. The participants were divided into two groups of training and control using a random quadruple block allocation method. The intervention took place over two months, in six online group sessions of 35-45 min. Zarit Burden Inventory (ZBI) and Cohen's Perceived Stress Scale (PSS-14) were used to collect information before and two weeks after the intervention. The study data were analyzed using and analysis of covariance (ANCOVA), pair, and independent t-tests at a significance level of 0.05., Results: At baseline, the two groups exhibited homogeneity in terms of mean scores for caregiving burden (Training group = 50.8 ± 4.9; Control group = 49.1 ± 6.0; P = 0.264) and perceived stress (Training group = 32.8 ± 4.7; Control group = 31.5 ± 2.4; P = 0.192). Nevertheless, following the intervention, there was a significant decrease in caregiving burden (Training group = 45.9 ± 4.1; Control group = 49.0 ± 5.8; P = 0.017) and perceived stress (Training group = 28.0 ± 4.4; Control group = 30.7 ± 3.5; P = 0.01) scores within the training group compared to the control group., Conclusion: Based on the findings of the current study, given that family caregivers of patients on hemodialysis encounter psychological distress and contend with the negative aspects of care, it is advisable to implement psycho-educational interventions, such as stress management training. Incorporating these interventions into the care plan for hemodialysis could help mitigate these adverse consequences and provide valuable support for family caregivers., Trial Registration: Iranian Registry of Clinical Trials (IRCT), IRCT20180728040617N6. Registered on 17/04/2023., (© 2024. The Author(s).)

Background: People living with advanced, non-malignant chronic conditions often have extensive and complex care needs. Informal or family caregivers often provide the care and support needed by those with advanced chronic conditions at home. These informal caregivers experience many challenges associated with their caring role, which can impact their own wellbeing. Whilst there is growing evidence around the impact on carers, guidance on support for informal caregivers of patients with advanced, non-malignant, chronic conditions is lacking, with little evidence available on effective psychosocial carer interventions. This systematic review explored existing interventions for caregivers of those with advanced, non-malignant, chronic illness, in order to assess the effectiveness of these interventions in improving psychosocial outcomes., Methods: Electronic databases, Medline, CINAHL, EMBASE, and PsycINFO, were searched up to the end of March 2023. Studies meeting the inclusion criteria, focusing on interventions to improve psychosocial outcomes, such as depression, anxiety, quality of life, and caregiver burden, in this cohort of caregivers were included. Data were extracted regarding study setting, design, methods, intervention components, and outcomes. Risk of bias and quality assessment were conducted., Results: A total of 5281 articles were screened, ultimately identifying 12 studies for inclusion, reported in 13 publications. A narrative synthesis revealed mixed results. Psychosocial interventions resulted in more significant improvements in psychosocial outcomes than psychoeducational or support interventions, with interventions for carer-patient dyads also reflecting more positive outcomes for caregivers. Evidence-based interventions, guided by an appropriate theoretical model, were reportedly more effective in improving caregiver outcomes. Differences in outcomes were related to intervention development, design, delivery, and outcome assessment., Conclusions: This review, to our knowledge, is the first to explore the effectiveness of interventions in improving psychosocial outcomes for caregivers of those with advanced, non-malignant, chronic conditions. The review highlights the need for more robust, sufficiently powered, high-quality trials of evidence-based interventions for caregivers of people with advanced chronic illness. Optimal intervention duration and frequency of sessions are unclear and need further exploration., (© 2024. The Author(s).)

Objective: Improving care transitions for older adults can reduce emergency department (ED) revisits, and the strain placed upon caregivers. We analyzed whether caregivers felt a change in burden following a care transition, and what may be improved to reduce it., Methods: This mixed-methods observational study nested within LEARNING WISDOM included caregivers of older patients who experienced an ED care transition. Burden was collected with the brief Zarit Burden Interview (ZBI-12), and caregivers also commented on the care transition. A qualitative coding scheme of patient care transitions was created to reflect themes important to caregivers. Comments were randomly analyzed until saturation and themes were extracted from the data. We followed both the SRQR and STROBE checklists., Results: Comments from 581 caregivers (mean age (SD) 64.5 (12.3), 68% women) caring for patients (mean age (SD) 77.2 (7.54), 48% women) were analyzed. Caregivers overwhelmingly reported dissatisfaction and unmet service expectations, particularly with home care and domestic help. Communication and follow-up from the ED emerged as an area for improvement. Caregivers who reported an increased level of burden following a patient's care transition had significantly higher ZBI scores than caregivers who self-reported stable burden levels., Conclusion: Caregivers with increasing, stable, and improved levels of subjective burden all reported areas for improvement in the care transition process. Themes centering on the capacity to live at home and inadequate communication were most frequently mentioned and may represent serious challenges to caregivers. Addressing these challenges could improve both caregiver burden and ED care transitions., (© 2024. The Author(s).)

Background: End of traditional institutionalized psychiatric care, diagnostic complexities, and associated stigma often negatively impact the social networks of caregivers, making them experience social isolation. Not the "identified patients", caregiver perspectives are typically overlooked further adding to anticipatory stigma resulting in social death among them. Caregiving experience results in developing coping skills, preventing carers from responding to the nuances of the context, and identifying the useful rules- "Experiential Avoidance". Psycho-education is typically combined with other formal treatment programs for case conceptualization, and to provide a clear rationale for the treatment approach but less as a distinct psychotherapy. Borrowing the philosophy of Functional Contextualism, the present study developed a "Present-Moment Awareness" guided psychoeducational intervention. The aim was to reduce schizophrenia caregiver burden and anticipatory stigma and promote the value of caregiver participation as 'experts by experience'., Method: Five family caregivers of remitted schizophrenia patients were recruited using purposive sampling. Pre-post measure was taken on caregiver burden, caregiving experience, sense of personal mastery, and caregiving competence. Results were analysed quantitatively and qualitatively., Results: A significant decrease in caregiver burden, stigma, and negative effects on the family in post-intervention was observed. Self-compassion led to a rise in a sense of empowerment., Conclusion: A caregiver-centred "Present-Moment Awareness" guided psycho-education for schizophrenia caregivers can be considered a possible means to address perceived stigma in caregivers and to reduce associated distress of carers., (© 2024. The Author(s).)

Background: Family members are often affected by the long-term consequences of traumatic brain injury, but are rarely involved in rehabilitation programs in the chronic phase. We thus do not know what family members´ main concerns are in the chronic phase, what factors are associated with perceived caregiver burden, and whether family members´ health and functioning improves due to rehabilitation efforts received by the patients. This study explored family-members` functioning, predictors of caregiver burden and effect for family members of a goal-oriented intervention in the chronic phase of traumatic brain injury., Methods: Family members self-reported data measuring their caregiver burden, depression, general health, loneliness, and their evaluation of patient competency in everyday life, patient awareness levels, main problem areas (target outcomes) for the patient related to the brain injury, and demographic data were collected. Regression models were used to explore predictors of caregiver burden, and mixed models analysis was used to explore treatment effects., Results: In total, 73 family members were included, 39 in the intervention group and 34 in the control group. Moderate to high caregiver burden was reported by 40% of family members, and 16% experienced clinical levels of depression. Family member loneliness and their evaluation of the patient`s level of functional competency explained 57% of the variability in caregiver burden. There were no treatment-related changes in caregiver burden, family member depression or general health. At T2 there was however a significant reduction in how family members rated severity of target outcomes that the family members had nominated at baseline (-0.38, 95% CI, -0.75 to -0.02, p = 0.04), but not for the target outcomes the patients had nominated., Conclusions: A significant proportion of family members to patients in the chronic phase of TBI continue to experience challenging caregiver burden and emotional symptoms. Both family member-related and patient factors contribute to caregiver burden. Interventions targeting patient complaints do not automatically alleviate family members´ burden. It is important to address social support for family members early after injury, and there is a need for more interventions specifically targeting family members´ needs., Trial Registration: The trial was registered at ClinicalTrials.gov, NCT03545594 on the 4th of June 2018., (© 2024. The Author(s).)

Background: The main objective of this study was to examine the burden of schizophrenia, depression, Alzheimer's disease/dementia, and stroke on caregivers and non-caregivers in Japan. This study also aimed to provide a comparative landscape on the burden of caregiving for each disorder., Methods: The Japan National Health and Wellness Survey database, 2016 and 2018 was used in this study. Health-related quality of life (HRQoL), work productivity, and health care utilization were assessed using a self-administered, Internet-based questionnaire. The burden of caregiving experienced by each group of caregivers was compared with background-matched non-caregivers (controls) as well as with caregivers of patients with each disorder., Results: Caregivers of patients with schizophrenia, depression, Alzheimer's disease/dementia, or stroke had lower HRQoL, higher healthcare costs and work productivity impairment than non-caregivers. Furthermore, caregivers of patients with psychiatric disorders such as schizophrenia and depression had lower HRQoL and work productivity than caregivers of patients with Alzheimer's disease/dementia and stroke. In addition, according to the Caregiver Reaction Assessment (CRA), caregivers of patients with schizophrenia and depression were more inclined to perceive a loss in physical strength and financial burden to the same extent as their self-esteem., Conclusions: This study indicated a substantial caregiving burden among caregivers of patients with psychiatric and neurological diseases in Japan. The caregiver burden of psychiatric disorders (schizophrenia and depression) was greater than that of neurological disorders (Alzheimer's disease/dementia and stroke), suggesting a need to provide support to caregivers of patients with psychiatric disorders to be better able to care for their patients., Trial Registration: None., (© 2024. The Author(s).)

Background: Upper gastrointestinal cancers (UGICs) are increasingly prevalent. With a poor prognosis and significant longer-term effects, UGICs present significant adjustment challenges for individuals with cancer and their informal caregivers. However, the supportive care needs of these informal caregivers are largely unknown. This systematic review of qualitative studies synthesises and critically evaluates the current evidence base on the experience of informal caregivers of individuals with UGIC., Methods: A Joanna Briggs Institute systematic review was conducted. Searches were performed in four databases (MEDLINE, PsycINFO, Embase, CINAHL) from database inception to February 2021. Included studies explored experiences of informal caregivers of individuals diagnosed with primary cancer of the oesophagus, stomach, pancreas, bile duct, gallbladder, or liver. Studies were independently screened for eligibility and included studies were appraised for quality by two reviewers. Data were extracted and synthesised using meta-aggregation., Results: 19 papers were included in this review, and 328 findings were extracted. These were aggregated into 16 categories across three findings: (1) UGIC caregiver burden; UGIC caregivers undertake extensive responsibilities, especially around patient diet as digestion is severely impacted by UGICs. (2) Mediators of caregiver burden; The nature of UGICs, characterised by disruptive life changes for caregivers, was identified as a mediator for caregiver burden. (3) Consequences of caregiver burden: UGIC caregivers' experiences were shaped by unmet needs, a lack of information and a general decline in social interaction., Conclusions: The findings of this review suggest the need for a cultural shift within health services. Caregiving for UGIC patients is suggested to adversely affect caregivers' quality of life, similarly to other cancer caregiving populations and therefore they should be better incorporated as co-clients in care-planning and execution by including them in discussions about the patient's diagnosis, treatment options, and potential side effects., (© 2024. The Author(s).)

Background: The majority of persons with dementia (PWD) are mainly cared for by their family members in the home. Evidence is however scarce on family caregivers' psychosocial burden and quality of life in Asian countries including Malaysia. This study describes the baseline data of a telephone-delivered psychoeducational intervention study and examines the determinants of outcome measures (caregiver burden, depressive and anxiety symptoms, quality of life and caregiving self-efficacy) among Malaysian family caregivers to PWD., Methods: This was a cross-sectional study originated from the baseline survey of a randomized control trial of 121 family caregivers recruited from lists of PWD who were registered at memory and psychiatry clinics in three tertiary care hospitals in Malaysia. The participants were assessed for caregiver burden by the Zarit Burden Interview, depressive and anxiety symptoms by the Hospital Anxiety and Depression Scale, quality of life by the Control, Autonomy, Self-Realization, and Pleasure Scale, and caregiving self-efficacy by the Revised Scale for Caregiving Self-Efficacy., Results: Prevalence of caregiver burden was 69.4%, depressive symptoms 32.2% and anxiety symptoms 32.2%. Family caregivers to PWD having perceived peer support e.g., social/family/friend/significant other supports were less likely to report caregiver burden, depressive and anxiety symptoms, and more likely to report higher levels of quality of life and caregiving self-efficacy. Being married and PWD's ability to self-care were associated with lesser likelihood of experiencing caregiver burden, depressive and anxiety symptoms. The other determinants of greater probability of reporting better quality of life were caregivers' employment and having Islamic faith. Marital status (married), PWD's ability to self-care, spousal relationship with PWD and shared caregiving process were associated with higher likelihood of reporting caregiving self-efficacy., Conclusion: Caregiver burden, depressive and anxiety symptoms are prevalent in family caregivers to PWD in Malaysia. Social support and caregiving related factors influence family caregivers' quality of life and caregiving self-efficacy. Implementing psychoeducational intervention and support in the psychiatry and memory clinics may help improve the psychosocial burden, quality of life and caregiving self-efficacy in family caregivers of PWD., Trial Registration: ISRCTN14565552 (retrospectively registered)., (© 2024. The Author(s).)

Background: Family caregivers of terminally ill and dying people do not only experience varying levels but also different dimensions of caregiver-related strain and burden. The aim of the study was to develop a short multidimensional screening tool for the detection of burden in family caregivers in palliative care., Methods: Family caregivers of cancer patients newly admitted to specialist inpatient palliative care (N = 232) completed questionnaires on psychological burden, quality of life, social support and need fulfillment. A latent class mixture model was used to identify discrete classes of family caregivers related to their multidimensional caregiver burden. Multinomial logistic regression analyses were performed to identify the most predictive items from a set of established questionnaires., Results: Four latent classes of family caregivers were identified: Currently stable caregivers (37%), Caregivers with unmet needs (20%), Psychologically burdened caregivers (30%), and High-risk caregivers (13%). Each of these classes describes a different risk profile of multidimensional family caregiver burden, although family caregivers exhibit high levels of distress across all classes. From a set of 48 items, we identified eight items that predicted the class membership best. These items represent the items of the novel multidimensional screening tool: The 8-item Screening Tool for Family Caregiver Burden in Palliative Care (CAREPAL-8). Except for social support, the items maintained fidelity to the conceptualization of multidimensional caregiver burden used in this study. A preliminary classification system was developed, which has yet to be validated., Conclusions: This study represents the first step in the establishment of a practical, self-administered screening tool that might help healthcare providers to tailor caregiver care according to their burden in daily practice. Brevity of the 8-item tool might facilitate its use in routine clinical care., (© 2024. The Author(s).)

Background: The Coronavirus disease 2019 (COVID-19) pandemic has significantly affected various aspects of public health. The virus poses a particular threat to individuals with kidney failure undergoing hemodialysis and their caregivers. The present study investigated the experience of family caregivers of individuals undergoing hemodialysis about caring during the COVID-19 pandemic in Iran., Methods: This qualitative study was conducted with 17 family caregivers of individuals undergoing hemodialysis in Bojnurd, Iran using inductive qualitative content analysis. The participants were selected using convenience and purposive sampling method with maximum variation. Semi-structured interviews were used in data collection based on the interview guide. The data were analyzed with MAXQDA10., Results: The results culminated in the identification of a main category of the COVID-19 care burden on caregivers and two generic categories including the COVID-19 Overt (financial/constraining) care burden (subcategories: Non-adherence to Health Protocols, COVID-19 Financial Costs, COVID-19 Restrictions and Hemodialysis Appointments, and Decreased Caregiver Support during the COVID-19 Era), and the COVID-19 Covert (emotional/psychological) Care Burden (subcategories: Caregiver's Loneliness in the Care, Stress of Contracting COVID-19, Psychological Consequences of individuals undergoing hemodialysis Staying at Home, The burden of other Individuals' Expectations of the Caregiver, and Physical and emotional pressure on the Caregiver)., Conclusion: Caregivers during the COVID-19 period have experienced both overt and covert care burden. The results of this study can contribute to understanding the experiences of caregivers of individuals with chronic diseases such as kidney failure, in critical conditions like the COVID-19 pandemic, by healthcare teams and devising strategies and programs to support them., (© 2024. The Author(s).)

Background: Quantifying the informal caregiver burden is important for understanding the risk factors associated with caregiver overload and for evaluating the effectiveness of services provided in Long-term Care (LTC)., Objective: This study aimed to develop and validate a Caregiver Strain Index (CSI)-based score for quantifying the informal caregiver burden, while the original dataset did not fully cover evaluation items commonly included in international assessments. Subsequently, we utilized the CSI-based score to pinpoint key caregiver burden risk factors, examine the initial timing of LTC services adoption, and assess the impact of LTC services on reducing caregiver burden., Methods: The study analyzed over 28,000 LTC cases in Southern Taiwan from August 2019 to December 2022. Through multiple regression analysis, we identified significant risk factors associated with caregiver burden and examined changes in this burden after utilizing various services. Survival analysis was employed to explore the relationship between adopting the first LTC services and varying levels of caregiver burden., Results: We identified 126 significant risk factors for caregiver burden. The most critical factors included caregiving for other disabled family members or children under the age of three (β = 0.74, p < 0.001), the employment status of the caregiver (β = 0.30-0.53, p < 0.001), the frailty of the care recipient (β = 0.28-0.31, p < 0.001), and the behavioral symptoms of dementia in care recipients (β = 0.28-2.60, p < 0.05). Generally, caregivers facing higher burdens sought LTC services earlier, and providing home care services alleviated the caregiver's burden., Conclusion: This comprehensive study suggests policy refinements to recognize high-risk caregivers better early and provide timely support to improve the overall well-being of both informal caregivers and care recipients., (© 2024. The Author(s).)

Background: The purpose of this study was to examine the effects of a brief family psychoeducation (BFP) programme provided by psychiatric visiting nurses on caregiver burden of family caregivers of people with schizophrenia through a cluster randomised controlled trial (cRCT)., Methods: The study was a two-arm, parallel-group cRCT. Forty-seven psychiatric visiting nurse agencies were randomly allocated to the BFP programme group (intervention group) or treatment as usual group (TAU; control group). Caregivers of people with schizophrenia were recruited by psychiatric visiting nurses using a randomly ordered list. The primary outcome was caregiver burden, measured using the Japanese version of the Zarit Burden Interview. Outcome assessments were conducted at baseline, 1-month follow-up, and 6-month follow-up. Intention-to-treat analysis was conducted to examine the effects of the BFP programme on caregiver burden., Results: Thirty-four psychiatric visiting nurse agencies and 83 family caregivers of people with schizophrenia participated in the study. The participant attrition rate was less than 20%. Adherence to the program was 100%. Compared with TAU group, the BFP programme group had decreased caregiver burden. However, this improvement was not significant at 1-month follow-up (adjusted mean difference [aMD] = 0.27, 95% CI = - 5.48 to 6.03, p = 0.93, d = 0.01) or 6-month follow-up (aMD = - 2.12, 95% CI = - 7.80 to 3.56, p = 0.45, d = 0.11)., Conclusions: The BFP programme provided by psychiatric visiting nurses did not achieve significant decreases in caregiver burden. This result may be attributed to the difficulty in continuing the research due to the COVID-19 pandemic, which prevented us from achieving the targeted sample size necessary to meet the statistical power requirements, as well as to the participation of caregivers with relatively low burden. However, the program had the advantage of high adherence to treatment plan. Further studies should be conducted with a larger sample size and a more diverse sample that includes caregivers with a higher care burden., Trial Registration: The study protocol was registered in the University Hospital Medical Information Network Clinical Trials Registry (UMIN000038044) on 2019/09/18., (© 2024. The Author(s).)

Background: Family caregivers are vital for long-term care for persons with serious health-related suffering in Kerala. Long-term caregiving and ageing may become burdensome and detrimental to patients and caregivers. We compared the caregiver burden and quality-of-life of ageing caregivers with younger caregivers. We also explored the palliative care nurses' perceptions of the family caregivers' issues., Methods: We did a mixed method study focusing on two groups: (i) three in-depth interviews and a cross-sectional survey among 221 caregivers of palliative care patients in five randomly selected panchayats (most peripheral tier of three-tier local self-government system in India concerned with governance of a village or small town) of Kollam district, Kerala, as part of development and validation of the Achutha Menon Centre Caregiver Burden Inventory; (ii) five in-depth interviews with purposively selected primary palliative care nurses as part of a study on local governments and palliative care. We used a structured interview schedule to collect cross-sectional data on sociodemographic and caregiving-related characteristics, caregiver burden, and health-related quality of life using the EuroQol EQ5D5L and interview guidelines on caregiver issues tailored based on participant type for qualitative interviews., Results: Older caregivers comprised 28.1% of the sample and had significantly poorer health and quality-of-life attributes. More senior caregivers experiencing caregiver burden had the lowest mean scores of 0.877 (Standard deviation (SD 0.066, 95% confidence intervals (CI) 0.854-0.899) followed by younger caregivers with high burden (0.926, SD 0.090, 95% CI 0.907-0.945), older caregivers with low burden (0.935, SD 0.058, 95% CI 0.912-0.958) and younger caregivers with low burden (0.980, SD 0.041, 95% CI 0.970-0.990). Caregivers faced physical, psychological, social, and financial issues, leading to a caregiver burden. The relationships between the palliative care nurses and family caregivers were complex, and nurses perceived caregiver burden, but there were no specific interventions to address this., Conclusion: In our study from Kollam, Kerala, three out of ten caregivers of palliative care patients were 60 years of age or older. They had significantly lower health-related quality of life, particularly if they perceived caregiver burden. Despite being recognized by palliative care nurses, caregiver issues were not systematically addressed. Further research and suitable interventions must be developed to target such problems in the palliative care programme in Kerala., (© 2024. The Author(s).)

Background: An increasing number of technologies are provided to reduce the burden of older adults' informal caregivers. However, less is known about the effects and the mechanism of technology to work on burden. This review is to evaluate the effectiveness of technology-based interventions (TBI) in alleviating the burden of older adults' informal caregivers and to distinguish its effective mechanism via group disparities., Methods: A systematic review and meta-analysis of randomized controlled trials studies (RCTs) has been conducted. Web of Science, PubMed, EMBASE, Scopus, CINAHL, PsycINFO, WANFANG, CNKI, CQVIP databases, Cochrane Library Trials, and ClinicalTrials.gov were searched for trial studies and registry in both English and Chinese published from January 1990 to October 2022. Reviewers independently screened the articles and trials, conducted quality assessments, and extracted the data. All processes were guided by Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Risk of bias of the studies was evaluated by the Cochrane Systematic Review Handbook. The meta-analysis was conducted by RevMan 5.13. Subgroup analyses, sensitivity analyses, publication bias were also conducted., Results: A total of 11,095 RCTs were initially screened, and 14 trials representing 1010 informal caregivers were included finally. This review proved TBI effective in reducing caregiving burden older adults. Subgroup analysis showed effects of TBI differed by interventions on control group and medical conditions of care recipients., Conclusion: TBI is an effective way to alleviate the burden on informal caregivers of aging people. Interventions for control groups and medical conditions of care-recipients are significant factors in effective interventions. Future researches could include more trials with high-quality or to explore more targeted aging groups, modalities of TBI, or caregiver outcomes., Trial Registration: The review protocol was registered on PROSPERO [CRD42021277865]., (© 2024. The Author(s).)

Background: Providing informal care for a person with Parkinson's disease (PD) can be a demanding process affecting several dimensions of a caregiver's life and potentially causing caregiver burden. Despite the emerging literature on caregiver burden in people with PD, little is known about the inter-relationship between quantitative and qualitative findings. Filling this knowledge gap will provide a more holistic approach to develop and design innovations aiming at reducing or even preventing caregiver burden. This study aimed to characterize the determinants of caregiver burden among informal caregivers of persons with PD, in order to facilitate the development of tailored interventions that reduce caregiver burden., Methods: We conducted a cross-sectional study in The Netherlands using a sequential mixed methods approach, entailing a quantitative study of 504 persons with PD and their informal caregivers as well as a qualitative study in a representative subsample of 17 informal caregivers. The quantitative study included a standardized questionnaire of caregiver burden (Zarit Burden Inventory) and patient-related (Beck Depression Inventory, State-Trait Anxiety Inventory, Acceptance of Illness Scale, MDS-Unified Parkinson's Disease Rating Scale part II on motor functions in daily life, Self-assessment Parkinson's Disease Disability Score), caregiver-related (Brief Coping Orientation to Problems Experience Inventory, Caregiver Activation Measurement, Multidimensional Scale of Perceived Social Support) and interpersonal determinants (sociodemographic variables including among others gender, age, education, marital status and working status). The qualitative study consisted of semi-structured interviews. Multivariable regression and thematic analysis were used to analyse quantitative and qualitative data, respectively., Results: A total of 337 caregivers were women (66.9%), and the majority of people with PD were men (N = 321, 63.7%). The mean age of persons with PD was 69.9 (standard deviation [SD] 8.1) years, and the mean disease duration was 7.2 (SD 5.2) years. A total of 366 (72.6%) persons with PD had no active employment. The mean age of informal caregivers was 67.5 (SD 9.2) years. Most informal caregivers were female (66.9%), had no active employment (65.9%) and were the spouse of the person with PD (90.7%). The mean Zarit Burden Inventory score was 15.9 (SD 11.7). The quantitative study showed that a lack of active employment of the person affected by PD was associated with a higher caregiver burden. The qualitative study revealed cognitive decline and psychological or emotional deficits of the person with PD as additional patient-related determinants of higher caregiver burden. The following caregiver-related and interpersonal determinants were associated with higher caregiver burden: low social support (quantitative study), concerns about the future (qualitative study), the caregiving-induced requirement of restrictions in everyday life (qualitative study), changes in the relationship with the person with PD (qualitative study) and a problem-focused or avoidant coping style (both studies). Integration of both data strands revealed that qualitative findings expanded quantitative findings by (1) distinguishing between the impact of the relationship with the person with PD and the relationship with others on perceived social support, (2) revealing the impact of non-motor symptoms next to motor symptoms and (3) revealing the following additional factors impacting caregiver burden: concern about the future, perceived restrictions and limitations in performing daily activities due to the disease, and negative feelings and emotional well-being. Qualitative findings were discordant with the quantitative finding demonstrating that problem-focused was associated with a higher caregiver burden. Factor analyses showed three sub-dimensions of the Zarit Burden Inventory: (i) role intensity and resource strain, (2) social restriction and anger and (3) self-criticism. Quantitative analysis showed that avoidant coping was a determinant for all three subscales, whereas problem-solved coping and perceived social support were significant predictors on two subscales, role intensity and resource strain and self-criticism., Conclusions: The burden experienced by informal caregivers of persons with PD is determined by a complex interplay of patient-related, caregiver-related and interpersonal characteristics. Our study highlights the utility of a mixed-methods approach to unravel the multidimensional burden experienced by informal caregivers of persons with chronic disease. We also offer starting points for the development of a tailored supportive approach for caregivers., (© 2023. The Author(s).)

Background: Caregivers health is often at risk due to the detrimental effects of caregiver burden. It is therefore vital to identify strategies and resources, which ensure the safeguarding of caregivers' health, whilst also enabling caregivers to continue providing high quality long-term care to care-receivers. The objective of this study is therefore to examine the moderating and mediating role of different social relationship constructs (social networks, social support, relationship quality, and loneliness) in the relationship between subjective caregiver burden and health, by exploring different coping models of the stress process paradigm, namely the stress buffering, social deterioration and counteractive models., Methods: Longitudinal survey data from 133 couples of caregiving romantic partners and persons with spinal cord injury, living in Switzerland were used. We employed multivariable regression analysis with the inclusion of interaction terms to explore moderation effects of social relationships (i.e. stress buffering model), and path analysis to explore mediation effects (i.e. social deterioration vs. counteractive model) of social relationships on the association between subjective caregiver burden and health. Health was operationalised using the following outcomes: mental health, vitality, bodily pain and general health., Results: Social support and relationship quality were found to buffer the negative effects of subjective caregiver burden on mental health. Mediating effects of social relationships were observed for mental health (indirect effect -0.25, -0.42- -0.08) and vitality (indirect effect -0.20, -0.37- -0.03), providing support for the deterioration model. Loneliness was found to be a particularly important construct on the pathway from caregiver burden to health., Conclusion: Our study highlights the potential of social support and relationship quality to override the negative consequences of caregiver burden on mental health and vitality. Our evidence thus supports the advance of interventions that seek to improve qualitative aspects of social relationships, especially in caregivers experiencing a high subjective caregiver burden., (© 2022. The Author(s).)

Background: Caregivers are invaluable sources of support for individuals recovering from head and neck cancer (HNC). Accordingly, minimizing caregiver distress is essential to promote the well-being of both caregivers and their patients. This study assessed if psychosocial distress (i.e., anxiety and depression) among HNC caregivers is associated with a difference in how caregivers and their patients perceive patients' quality of life (QOL) after treatment completion., Methods: Caregivers' and patients' perceptions of patient QOL were assessed using the University of Washington QOL Questionaire (UWQOL), a validated HNC-specific health-related QOL questionnaire. The survey is interpreted in terms of its two composite scores: a physical QOL score and a social-emotional QOL score with higher scores indicating better QOL. Caregiver anxiety was assessed using the Generalized Anxiety Questionaire-7 (GAD-7) and caregiver depression was assessed using the Patient Health Questionaire 8 (PHQ-8). Patients completed the UWQOL as part of clinic intake while caregivers were asked to complete the UWQOL for their patients in addition to the PHQ-8 and GAD-7 in private. Linear regression was used to analyze the association between differences in caregivers' and patients' QOL scores (both social-emotional and physical QOL subscale scores) and GAD-7 and PHQ-8 scores., Results: Of 47 caregivers recruited, 42.6% (n = 20) viewed patients' social-emotional QOL more negatively than patients themselves, while 31.9% viewed patients' physical QOL more negatively. After controlling for covariates, differences in perception of social-emotional QOL (p = .01) and differences in perception of physical QOL (p = .007) were significantly associated with caregiver depression, but not anxiety. Caregivers who disagreed with patients regarding patients' social-emotional QOL scored 6.80 points higher on the PHQ8 than agreeing caregivers. Caregivers who disagreed regarding patients' physical QOL scored 6.09 points higher., Conclusion: Caregivers commonly view patients' QOL more negatively than patients themselves. These caregivers tend to have greater psychosocial distress than caregivers who agree with their patients. Interventions designed to identify and aid at-risk caregivers are critically needed. We propose screening for differences in perception of patient QOL as a way of identifying distressed caregivers as well as provider-facilitated communication between patients and caregivers as possible interventions that should be examined in future research., (© 2021. The Author(s).)

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.

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.