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Background: Caregiving for people with mental illness (PwMI) could be burdensome, especially for informal caregivers. However, there is a scarcity of research investigating caregiving burden among informal caregivers of PwMI in China at the national level. To fill this gap, this study examined the prevalence of caregiving burden, depression, and anxiety, as well as their associated factors, among a cross-sectional sample of informal caregivers of PwMI in China., Methods: Data were collected via an online survey between June and November 2023. Caregiving burden, depression, and anxiety were measured by the Zarit Burden Interview, the Patient Health Questionnaire, and the Generalized Anxiety Disorder Scale. Information on caregivers' sociodemographic, care recipients' sociodemographic and disease-related, and caregiving-related characteristics was also collected. Hierarchical regression analyses were performed to identify associated factors of caregiving burden, depression, and anxiety., Results: A total of 1,224 informal caregivers of PwMI in China were included in the final analysis. 72.1% of the participants had high caregiving burden, 53.5% had moderate to severe depression, and 43.1% had moderate to severe anxiety. Caregiving burden, depression, and anxiety were inter-correlated with each other but exhibited different profiles of associated factors. The most important factors associated with all the three outcomes were disease-related characteristics, particularly care recipients' symptom stability, medication compliance, and insight. Informal caregivers of males with mental illness had higher levels of caregiving burden, depression, and anxiety than those of females. There was a lack of differentiation in caregiving burden, depression, and anxiety based on care recipients' diagnosis. Formal or common-law marriage was a protective factor for caregiver depression and anxiety but not for caregiving burden., Conclusion: Informal caregivers of PwMI in China experienced a high level of caregiving burden, depression, and anxiety. Urgent actions are needed to relieve caregiving burden, depression, and anxiety among informal caregivers of PwMI in China., Competing Interests: Declarations Ethics approval and consent to participate This study was performed in accordance with the Declaration of Helsinki and approved by the Ethics Committee of Shanghai Mental Health Center, Shanghai Jiao Tong University (Reference Number: 2023–74). The informed consent form was presented on the first page of the online questionnaire distributed in this study and only those who checked the consent box on the form were guided to complete the remaining part of the questionnaire. Consent for publication Not applicable. Competing interests The authors declare no competing interests., (© 2024. The Author(s).)

Introduction: The effectiveness of Brief Psycho-education (BPE) is well-established among caregivers of adults with mental disorders, this is however not the case among caregivers of children and adolescents with Intellectual disability (ID) due to the dearth of data occasioned by relatively few studies in the area., Objective: This study assessed the impact of BPE on Caregiver burden (CB) among caregivers of children and adolescents with ID., Methodology: A single-blind RCT was conducted in the Child and Adolescent Clinic in the Psychiatric Hospital, Benin City. Randomization was done via a central computer system and group allocation via a third party. Family caregivers (n=58) were randomly assigned to intervention (n=29) and control (n=29) groups. Intervention and follow-up periods were 4 weeks each. Weekly BPE in addition to routine care (RC) was administered to the intervention group. The primary analysis was based on 58 participants (n=29; n=29) comparing CB in the two groups at the 4th week and 8th week post-intervention., Results: Mean follow-up post-intervention showed a significant reduction in overall CB in the intervention group between 0 and 4th week (mean deviation 6.76, p=0.03) as well as, 4th and 8th week (mean deviation 12.35, p<0.001). For the CB dimensions, mean follow-up scores post-intervention reached a significant reduction in the 8th week for financial/physical strain factor (mean deviation 1.8, p=0.02), time/dependence strain factor (mean deviation 2.4, p<0.001), emotional strain factor (mean deviation 1.3, p<0001), uncertainty factor (mean deviation 1.45, p=0.004) and self-criticism factor (mean deviation 1.19, p<0.001)., Conclusion: BPE was superior to routine care in reducing CB among caregivers of Children and Adolescents with Intellectual disability., Competing Interests: The Authors declare that no competing interest exists, (Copyright © 2024 by West African Journal of Medicine.)

Background: Caring for people with mental illness requires a significant investment of personal physical, mental, social, and financial resources, which greatly impact the daily lives of caregivers. The process of providing care is multifaceted and intricate, involving both positive and negative emotional responses. Burden of care is a term used to describe the negative effects of caregivers' burden on their physical, psychological, social, and economic well-being. Therefore, the aim of this systematic review and meta-analysis is to provide an overview of the most recent information available regarding the pooled prevalence of burden of care among people with mental illness in Africa., Methods: In this study, we followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA), which is a suitable guideline for reports of systematic reviews and meta-analyses. The PROSPERO protocol number for this review is CRD42024499138. To find publications for the systematic review and meta-analysis, we used PubMed, MEDLINE, EMBASE, Cochrane Library, and Scopus databases. The Joanna Briggs Institute (JBI) for cross-sectional study quality assessment was employed to evaluate the methodological quality of the studies included in this review. The data was extracted in Microsoft Excel, and then it was exported into STATA 11.0 for analysis. A funnel plot and an objective examination of Egger's regression test were used to check for publication bias., Results: We have included 12 studies conducted in African countries with 2156 study participants, of whom 1176 (54.55%) were female individuals. In this meta-analysis, the pooled prevalence of burden of care among caregivers of people with mental illness in Africa was 61.73 (95% CI: 51.25-72.21%). Further, in subgroup analysis regarding the study country, the pooled prevalence of carer burden among caregivers of people with mental illness in Egypt and Nigeria was 79.19% and 55.22%, respectively., Conclusion: This review found a high pooled prevalence of caregiver burden related to mental illness in Africa. To minimize the challenges faced by individuals with mental illnesses, as well as the burden on their caregivers, stakeholders may find these findings useful for addressing prevention, early screening, and management., (© 2024. The Author(s).)

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).)

Purpose: Research has shown that caregiver burden is compounded by dysphagia experienced by the care recipient. However, little is known about the caregiver perception of the caregiving experience, highlighting both the positive and negative experiences. As such, the purpose of this clinical focus article was to provide a first-person account of an adult caregiver of an aging parent with dysphagia and relate their experiences to current literature to inform clinical practice., Method: The caregiver provided a detailed account of her experiences caring for her father with dysphagia. Her account was analyzed to identify recurring themes in the literature regarding the caregiving experience and to identify gaps in dysphagia-related caregiver support. The caregiver's story is organized into seven main sections: (a) life before dysphagia, (b) dysphagia onset and diagnosis, (c) dysphagia management and support, (d) community support, (e) impact on family relationships, (f) social and emotional health, and (g) current perspectives on the caregiving experience., Conclusions: The challenges associated with caregiving clearly impact the caregiver's overall well-being, but she received abundant support from her family, community-based speech-language pathologist, and caregiver support groups. The caregiver's experiences, while not applicable to every caregiver caring for a loved one with dysphagia, can offer valuable insights to clinicians and other caregivers facing similar situations.

Objectives: To investigate the moderating effect of self-compassion on the relationship involving stigma, caregiver burden and expressed emotions among caregivers of males diagnosed with substance use disorder., Methods: The correlational, quantitative study was conducted from June 1 to September 30, 2021, at the Department of Psychology, University of Central Punjab, Lahore, Pakistan, and comprised caregivers aged 40-55 years living with individuals with substance use disorder and actively performing caregiving duties for at least six months. Data was collected using validated tools. Data was analysed using SPSS 21., Results: Out of the 300 subjects, 54(18%) were males and 246(82%) were females, with overall mean age 45±7.73 years. The caregiving duration ranged from 6 months to 20 years. Self-compassion significantly moderated stigma, caregiver burden and expressed emotions (p=0.001). The interaction effects of self-compassion with stigma, affect, behaviour, cognition and caregiver burden collectively explained 88% of the variance in expressed emotion. Selfcompassion accounted for a significant change in expressed emotion (p<0.05)., Conclusions: Internalised stigma and caregiver burden predicted expressed emotions in caregivers of males with substance use disorder.

A quasi-experimental study aimed to investigate the effects of both teach-back and blended training methods on the contribution to self-care and perceived care burden among family caregivers of patients with heart failure. Seventy family caregivers of patients with heart failure were randomly allocated to two groups: one receiving the teach-back method and the other receiving the blended training method. Data were collected before, 1 month, and 3 months after the intervention. Data collection included demographic data and two tools: the Caregiver Contribution to Self-Care of Heart Failure Index and the Caregiver Burden Questionnaire for Heart Failure. Both teach-back and blended training methods were effective in educating family caregivers of patients with heart failure requiring home care. However, the teach-back method demonstrated better outcomes for the two concepts examined in this study., (Copyright © 2024 Wolters Kluwer Health, Inc. All rights reserved.)

An expanding body of literature suggests that informal caregiver burden is a growing issue that negatively impacts care recipients, informal caregivers, and formal care providers. Costs associated with informal caregiver burden include risk to the informal caregiver's physical, emotional, and psychological well-being and increased potential to perpetrate violence. By identifying interventions to support informal caregivers, home healthcare nurses can help decrease the risk of negative outcomes and reduce the burden on informal caregivers. This paper examines home healthcare nurses' role in helping reduce the impact of informal caregiver burden, thereby reducing the risk for violence. By prioritizing caregiver burden as a critical area of focus in reducing violence risk, home healthcare organizations and the nurses who work for them can help address gaps in care while also recognizing the informal caregivers' critical role in caring for their loved ones., (Copyright © 2024 Wolters Kluwer Health, Inc. All rights reserved.)

Introduction: Older adults with cancer value the perspectives of significant others and their carers regarding decision-making about treatment. Understanding the support provided by carers, and their perspectives on involvement in treatment decision-making, can help us improve our communication with patients and their supports. We aimed to describe the roles, burden, and decision-making preferences of carers of older adults with cancer., Materials and Methods: We performed a cross-sectional survey of carers of older adults (≥65y) with cancer at three centres in Sydney, Australia. Type, frequency, and perspectives on providing care were evaluated using Likert scales. Preferred and perceived role in treatment decision-making by modified Control Preferences Scale, and carer burden by Zarit Burden Index (ZBI-12), were evaluated. Preferred role in decision-making and carer burden were compared between groups (culturally and linguistically diverse backgrounds [CALD], sex, and carer age ≥ 65) by chi-squared or t-tests., Results: One-hundred and fourteen returned surveys were included (23 partially completed). Carer characteristics: median age 55y (range 24-90), female (74 %), child (49 %) and spouse (35 %) of the care-recipient. Care-recipient characteristics: median age 75y (range 65-96), receiving anti-cancer treatment (85 %), and CALD background (44 %). Carers were frequently involved in communication and information gathering (45 % -80 %) and supported instrumental activities of daily living (IADLs) (43 % - 81 %) more frequently than basic activities of daily living (ADLs) (2-13 %). Most (91 %) preferred to be present when treatment options were discussed. Their preferred role in treatment decision-making was passive in 66 %, collaborative in 30 %, and active in 4 %, with most (72 %) playing their preferred role. The preferred role was associated with carer age (p = 0.01) and CALD background (p = 0.04), with younger (<65y) carers and those caring for CALD older adults preferring a more passive role. Carer burden was 'low' in 29 %, 'moderate' in 31 %, and 'high' in 39 %, and providing psychological support was rated most challenging., Discussion: Carers of older adults with cancer play varied support roles, particularly in communication and information gathering. Carers prefer to be present for discussions about treatment options, though favour a passive role in treatment decision-making, upholding patient autonomy. Understanding the communication preferences of carers is an important consideration when supporting the patient in deciding treatment options and direction of care., Competing Interests: Declaration of Competing Interest The authors have no conflicts of interest to declare., (Crown Copyright © 2024. Published by Elsevier Ltd. All rights reserved.)

Background: Parkinson's disease (PD) increases patient load and requirements of care. Determining the burden on PD patients' caregivers and associated factors may help to identify methods to reduce caregiver burden. This study investigated the factors associated with caregiver burden among PD patients caregivers., Methods: Eighty-five PD patients and 85 caregivers were included in the study. Zarit Burden Interview (ZBI) was used to measure caregiver burden; the Ways of Coping Scale (WCS) was used for coping; Modified Hoehn-Yahr Staging (MHYS) was used for staging patients. The International Parkinson and Movement Disorder Society Unified Parkinson's Disease Rating Scale (MDS-UPDRS) parts 1 and 3 were used to evaluate non-motor and motor problems. Caregivers' depression and anxiety levels were evaluated with the Beck Depression Inventory and Beck Anxiety Inventory (BAI). Spearmen correlation coefficient was used to evaluate the relationship of variables with the ZBI score, and multiple linear regression analysis was used to determine the predictors of the ZBI score., Results: A positive significant relationship was found between the ZBI score and BAI score, MHYS score, WCS total score, and subscales: keeping to self, seeking refuge in fate, and seeking refuge in supernatural forces. MHYS score, WCS total score, BAI score, and MDS-UPDRS-1 were predictors of the ZBI score., Conclusions: The anxiety levels of caregivers, their ways of coping, and the patient's stage of the disease are important in caregiver burden. Coping ways can be changed to reduce the care burden. Developing psychological interventions for caregivers to change their coping styles can be important., (© 2024 Japanese Psychogeriatric Society.)

Objectives: This study aimed to evaluate the association between the sociodemographic characteristics of caregivers and patients with stroke, clinical data on stroke, and disability with caregiver burden, hopelessness, and anxiety., Materials and Methods: This cross-sectional study included patients with stroke of either sex, aged >18 years. Data were collected between January 2020 and July 2021. Patient demographic included age, sex, stroke type, severity, etiology, topography, treatment, and stroke recurrence. Stroke disability was assessed using the modified Rankin Scale and Barthel Index at 90 days post-discharge. Additionally, caregiver burden, hopelessness, and anxiety were evaluated during patient consultations using the Zarit Burden Interview (ZBI), Beck Hopelessness Scale (BHS), and Beck Anxiety Inventory (BAI)., Results: We included 104 patients with stroke and their caregivers. Overall caregiver burden was moderate (ZBI: 24 [25]), with mild hopelessness (BHS: 4 [4]) and minimal to mild anxiety (BAI: 8 [13]). The linear regression model presented in Table 3 showed that female caregivers scored up to 11 points higher on the Zarit Burden Interview (p = 0.011). Additionally, increased patient age was associated with a higher caregiver burden (p = 0.002) on the Zarit Burden Interview. Posterior circulation stroke and total anterior circulation stroke were also associated with higher Zarit Burden Interview scores compared to lacunar stroke (p = 0.017). Age was not associated with caregiver burden in the entire sample. However, an association between age and caregiver burden was found only in the female group. Furthermore, women aged 65 years and older experienced a more severe burden than women aged 18 to 64 years (p<0.001). Stroke disability was not associated with caregiver burden., Conclusions: Older female caregivers were significantly affected when caring for stroke patients. Total anterior circulation stroke and Posterior circulation stroke increased Zarit Burden Interview scores. However, no association was observed between stroke disability and the caregiver burden., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 Elsevier Inc. All rights reserved.)

The demanding nature of caring for relatives with Alzheimer's disease and related dementias (ADRD) can lead to family caregiver burden and poor health. The stigmatization of people with ADRD can also impact caregivers' stress, while their support-seeking strategies may mitigate negative impacts of burden on their health. To examine hypothesized relationships, the present study considered whether different dimensions of ADRD family stigma influenced the association between a care recipient's behavioral symptoms and their family caregiver's perceived burden and if direct support seeking explained a connection between caregiver burden and well-being. Family caregivers ( n  = 375) completed a Qualtrics survey. Path analysis revealed ADRD behavioral symptoms predicted both caregiver and layperson forms of stigma. Layperson stigma also intervened between behavioral symptoms and caregiver burden. Direct support seeking mediated the association between caregiver burden and well-being. Findings underscore the utility of including stigma within ADRD caregiver stress models and studying caregiver health from network and communication perspectives.

Objectives: A large gap exists in the development of culturally sensitive interventions to reduce stress related to dementia care among Chinese Americans, one of the fastest growing minority populations in the United States. We developed and pilot tested the feasibility and preliminary efficacy of a peer mentoring program for Chinese American dementia caregivers., Method: A pilot randomized controlled trial was conducted among 38 Chinese American caregivers in New York City. Four outcome variables-caregiving competence, loneliness, caregiver burden, and depressive symptoms-were measured at baseline and 3-month and 9-month follow-ups. The study protocol and preliminary results are available at clinicltrial.gov [NCT04346745]., Results: The feasibility of the intervention was high, as indicated by an acceptable retention rate, fidelity, and positive feedback from caregivers and mentors. Compared with the control group, the intervention group had greater reductions in scores for loneliness at 3-month follow-up and for caregiver burden and depressive symptoms at 9-month follow-up. We did not find significant differences in caregiving competence between the two groups., Conclusion: The results indicated the high feasibility and potential efficacy of empowering existing human resources of experienced caregivers in the same ethnic community to improve the mental health of Chinese caregivers. Further research is needed to test the efficacy in a larger sample of this population.

Objectives: To systematically evaluate the effects of telehealth interventions on the caregiver burden and mental health of caregivers for people with dementia (PWD)., Method: Relevant randomized controlled trials (RCTs) of telehealth interventions on caregivers were extracted from nine electronic databases (PubMed, The Cochrane Library, Web of Science, Embase, CINAHL, SinoMed, CNKI, WanFang, and VIP). The retrieval time was from inception to 26 July 2023., Results: Twenty-two articles with 2132 subjects were included in the final analysis. The meta-analysis demonstrated that telehealth interventions exerted a significant effect in reducing caregiver burden (SMD: -0.14, 95 % CI: -0.25, -0.02, p  = 0.02), depression (SMD = -0.17; 95%CI: -0.27, -0.07, p  < 0.001) and stress (SMD = -0.20, 95%CI: -0.37, -0.04, p  = 0.01). However, no statistically significant effect was observed on anxiety (SMD = -0.12, 95%CI: -0.27, 0.03, p  = 0.12). Moreover, subgroup analysis showed that tailored interventions were associated with more evident reductions in depression (SMD = -0.26; 95%CI: -0.40, -0.13, p  < 0.001) than standardized interventions (SMD = -0.08; 95%CI: -0.22, 0.06, p  = 0.25). In addition, telehealth was effective in relieving depression in Internet-based (SMD = -0.17, 95%CI: -0.30, -0.03, p  = 0.01) and Telephone-based group (SMD = -0.18, 95%CI: -0.34, -0.02, p  = 0.03), while there was no significant difference in the Internet and Telephone-based group (SMD = -0.18, 95%CI: -0.54, 0.18, p  = 0.32)., Conclusion: Telehealth could effectively reduce the burden and relieve the depression and stress of caregivers of PWD, while its effect on anxiety requires further research. Overall, telehealth has potential benefits in dementia care.

Background: This study evaluated the level of burden in pediatric and adolescent atopic dermatitis (AD) patients in Japan, the associated burden on caregivers/families, and whether this burden varied with age., Methods: Data were drawn from the Adelphi Pediatric AD Disease Specific Programme (DSP)™, a cross-sectional survey of physicians and their patients conducted in Japan between July and December 2022. Physicians reported patient demographics, clinical characteristics, disease burden, and current/previous therapies. Patients and/or caregivers reported perceived disease severity and impact of AD, including the Children's Dermatology Life Quality Index (CDLQI) and Dermatitis Family Impact questionnaire (DFI)., Results: Overall, 55 physicians provided data for 537 AD patients aged ≤17. Mean (SD) overall scores for CDLQI, POEM, and DFI were 9.3 (6.3), 8.3 (6.8), and 11.7 (7.2), respectively. Age was associated with higher patient and/or caregiver-reported CDLQI scores, which increased by 0.543 points per year of age (P = 0.01). Patients with severe disease reported a more significant impact on quality of life factors compared with mild patients (P < 0.001). Age was associated with higher caregiver-reported burden, with DFI scores increasing by 0.325 per year (P = 0.01). Physician-reported impact on caregivers showed that age was significantly associated with increased burden on sleep, daily activities, work, and mood (P < 0.05), with disease severity associated with impact across all factors (P < 0.01)., Conclusions: Both increasing age and disease severity were associated with the increased impact of AD on patients and their caregivers. Disease control/modification through appropriate therapeutic intervention at a younger age may relieve the burden of pediatric AD on patients and their families., (© 2024 The Author(s). International Journal of Dermatology published by Wiley Periodicals LLC on behalf of the International Society of Dermatology.)

Purpose: This study aimed to better understand how the powered wheelchair (PWC) impacts the experiences of family caregivers of PWC users, and explore the strategies and resources used by caregivers to cope with their role., Materials and Methods: This mixed-methods study was part of a larger cross-sectional research study conducted in four Canadian cities. Twenty-three family caregivers of PWC users, who provided at least 2 h of support per week, completed the Power Mobility Caregiver Assistive Technology Outcome (PM-CATOM), an 18-item measure assessing PWC-related and overall burden experienced by family caregivers. We also conducted semi-structured interviews and analysed them using inductive content analysis., Results: From the quantitative PM-CATOM results, the caregivers perceived low level of burden for the wheelchair-related items, (Median:4.5; Range 3 to 5). Most perceived burden when physically helping the wheelchair user and when providing verbal hints. In terms of overall help, the caregivers experienced some level of burden (Median 3.5: Range 3 to 5). Most caregivers identified burden associated with the limitation to their recreational and/or leisure activities (52.2%) and feeling that they have more to do than they can handle. We identified 3 themes in the interviews: the burden experiences of caring for PWC users, the positive experiences of caregiving, and the coping strategies and resources used by caregivers of PWC users., Conclusion: Our study showed that understanding the experiences of caregivers of AT users is central as they are directly and indirectly impacted by the PWC in their lives and caregiving roles.

Background: When a patient is disabled after stroke, they require both emotional support and medical management and may require the assistance of a caregiver. Given the often-sudden onset of disability and the complex challenges related to caring for someone after stroke, caregivers can experience a heavy burden. Caregiver burden negatively affects quality of care, quality of life, and physical and psychological health. The impact of gender on caregiver burden has been in many other conditions; however, the association has not yet been thoroughly assessed in stroke., Objective: The aim of this paper is to define caregiver burden, discuss how it is assessed, discuss unique aspects of burden for stroke caregivers, and determine the impact of sex and gender on stroke caregiver role and burden., Methods: A narrative review was performed to synthesize the available literature and explore how the role of sex and gender impact caregiving for patients who have suffered stroke and whether sex and gender of the caregiver contribute to caregiver burden r., Results: Review of the available literature suggests that sex and gender significantly impact caregiving burden following stroke dipropionately affecting women., Conclusions: Caregiving for patients who have suffered stroke is often provided by women both inside the home and when patients are within institutions. Women who serve as caregivers to stroke patients may be at higher risk of experiencing burden and its negative effects, including emotional strain, anxiety, and/or depression. More research is needed to determine the best ways to provide support for women who act as caregivers for stroke patients to mitigate caregiver burden., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024. Published by Elsevier Inc.)

Introduction: Stroke negatively impacts both patients and their families, who must face multiple changes after the onset of the disease. Family caregivers must face new problems with a possible sense of inadequacy, stress and burden. Our retrospective study aimed to assess the burden of caregivers during the rehabilitation process of patients with Stroke., Material and Method: This study included patients with a diagnosis of stroke and their caregiver, who attended the Day Hospital of the IRCCS Neurolesi Center "Bonino-Pulejo", Messina, Italy, between January 2018 and October 2019, using electronic recovery system data. The final sample consisted of 30 patients and their caregivers., Results: Significant improvements were observed in patients' cognitive and mood scores, reflecting the efficacy of rehabilitation therapies. Additionally, a correlation emerged between patients' reported anxiety levels and caregivers' reported depression levels, highlighting a dynamic interaction between the emotional states of the two groups., Conclusion: The study highlights the intricate interplay between caregiver characteristics, patient outcomes, and family dynamics in the context of caregiving. Targeted interventions aimed at improving family resilience and coping mechanisms are crucial to optimizing the well-being of both caregivers and patients., (© 2024. The Author(s).)

Background: Family caregivers of dementia patients face significant challenges, including managing their own emotional responses. Understanding factors influencing expressed emotion (EE) is crucial for effective support interventions. The aim of this study was to explore and describe changes in EE among family caregivers of dementia and its associated factors at different time points over 3 months., Methods: A 3-month observational study was conducted in Japan. We collected demographically detailed data on family caregivers currently providing care, including care burden, relationship closeness, and depression. We assessed EE using the validated Family Attitude Scale (FAS). After adjustment for multiple confounding factors, multivariate linear regression analysis was performed to assess factors affecting EE at various time points. Linear regression analysis with generalised estimating equations was used to assess associations between 3-month time-varying EE and burden, intimacy, and depression., Results: Fifty-six family caregivers completed the study. Changes in FAS scores did not show statistical differences over 3 months. It is worth noting that the degree of relationship closeness and care burden are important influencing factors of EE in both cross-sectional analysis and longitudinal analysis., Conclusions: Early identification of risk factors can aid in developing interventions aimed at preventing high levels of EE in the dementia family, thereby mitigating their detrimental effects. Tailored interventions are essential to enhance caregiver well-being and cultivate positive caregiver-patient relationships., (© 2024 Japanese Psychogeriatric Society.)

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).)

This study aimed to assess the burden and influencing factors among primary caregivers of children with congenital microtia. A total of 153 primary caregivers of children with congenital microtia who underwent auricular reconstruction surgery at a tertiary A-grade hospital in Xi'an between October 2019 and August 2022, were recruited using convenience sampling. The Zarit Caregiver Burden Interview (ZBI) was employed to evaluate caregiver burden. While convenience sampling allowed for the practical recruitment of participants, its limitations include potential selection bias, which may affect the generalizability of the results. The mean total ZBI score was 30.07 ± 12.29. Among the participants, 26 caregivers (17.0%) reported no burden, 102 caregivers (66.7%) reported mild burden, 22 caregivers (14.4%) reported moderate burden, and 3 caregivers (2.0%) reported severe burden. Multivariate regression analysis identified several significant factors influencing caregiver burden, including the location and severity of the lesion, educational level, method of medical payment, monthly household income, communication with others about the child's condition, caregiver self-blame or guilt, and family support (all P < .05). Primary caregivers of children with congenital microtia face substantial burdens, emphasizing the need for targeted healthcare interventions. Strategic approaches are essential to address the psychological, social, and financial challenges they encounter. Future research should focus on longitudinal studies and interventions to enhance caregiver well-being and patient outcomes. However, caution is advised when generalizing these findings due to the sampling limitations., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2024 the Author(s). Published by Wolters Kluwer Health, Inc.)

Objectives: This study aimed to identify factors affecting the psychological well-being of family caregivers of dependent older adults in Italy. Understanding these variables is essential for designing interventions to prevent negative outcomes in at-risk caregivers. The research explored how varying levels of caregiving burden and types of perceived social support influence psychological well-being., Methods: A cross-sectional study was conducted among 387 family caregivers of older adults in the Marche region (Italy) between November 2019 and March 2020. Data were collected via a structured questionnaire assessing psychological well-being (WHO-5 Well-Being Index), caregiving burden, and social support (COPE Index). Statistical analyses were performed using Jamovi software, with a significance threshold set at p  < 0.05., Results: A significant negative correlation was found between caregiving burden and psychological well-being [ r (364) = - 0.540, p  < 0.001], with caregiving burden being a significant predictor of psychological well-being reduction ( R 2  = 0.290; F  = 150, p  < 0.001). A threshold value of 2 (on a 1-4 scale) was identified, where caregiving burden predicted a significant reduction in psychological well-being. Conversely, greater perceived social support was positively correlated with better psychological well-being [ r (357) = 0.348, p  < 0.001] and was a significant predictor of it [ R 2  = 0.121; F  = 49.2, p  < 0.001]. Support from social and health services had the most notable impact on psychological well-being. Moreover, social support mitigated the negative impact of caregiving burden on psychological well-being., Conclusion: The study confirms that high caregiving burden adversely affects caregivers' psychological well-being, while social support plays a protective role. These findings highlight the need for interventions focused on reducing caregiving burden and enhancing support systems for family caregivers., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2024 Bongelli, Busilacchi, Pacifico, Fabiani, Guarascio, Sofritti, Lamura and Santini.)

Introduction: Caregivers of patients with end-stage kidney disease (ESKD) face significant challenges that contribute to caregiver burden, negatively impacting their psychosocial well-being. Virtual-reality (VR)-guided mindfulness interventions have shown promise in reducing stress, anxiety and depression in various populations., Methods and Analysis: This pilot study aims to evaluate the efficacy and feasibility of a VR-guided mindfulness intervention for ESKD caregivers. A single-centre, single-blind, parallel-group pilot randomised controlled trial will be conducted. Thirty ESKD caregivers will be randomly allocated to either the VR-guided mindfulness intervention group or the sham VR control group. The intervention group will receive a 6 week home-based VR-guided mindfulness programme, while the control group will view relaxing nature videos without mindfulness content. Participants will be assessed at baseline, post-intervention (6 weeks) and follow-up (12 weeks) using validated questionnaires for caregiver burden (Zarit Burden Interview (ZBI)), stress, anxiety, depression (Depression Anxiety Stress Scale-21 (DASS-21)), quality of life (36-Item Short Form Health Survey (SF-36)) and mindfulness (Five Facet Mindfulness Questionnaire (FFMQ)). Feasibility outcomes include accrual rates, retention, adherence, questionnaire completion and side effect rates. Semi-structured interviews will explore participants' experiences with the intervention., Ethics and Dissemination: The study has been approved by the NHG Domain Specific Review Board (Reference: 2024-3940-APP1). The results of this pilot study will be reported in peer-reviewed open-access journals and shared with participants and stakeholders., Trial Registration: NCT06479200., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

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).)

Objectives: To explore burden and its related factors among primary caregivers of patients with cancer., Sample & Setting: This study was conducted in an oncology ward at a medical center in southern Taiwan. A total of 137 dyads of patients with cancer and their primary caregivers were recruited., Methods & Variables: This cross-sectional correlational study used a structured questionnaire to assess the burden of primary caregivers. Data on patients' basic characteristics and disease profiles were extracted from medical records from January to June 2019. Linear regression analysis was used to identify factors associated with the burden of primary caregivers., Results: The majority of primary caregivers were female (70%) and aged younger than 65 years (85%). Overall, the mean primary caregiver burden score was 38.83 (SD = 12.86), with spiritual burden ranking highest among the four domains assessed. Factors related to overall primary caregiver burden included psychiatric symptoms, daily care hours, patient age, and the lack of rotational support., Implications for Nursing: Hospice and oncology nurses can actively identify psychiatric symptoms in primary caregivers, targeting high-risk groups to provide timely resources or psychiatric referrals, aiming to alleviate future caregiver burden.

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).)

Pharmacotherapy has deinstitutionalized the patients with psychotic disorder. This has led to the transfer of the caregiving burden from hospitals to family members of the patients. This study aimed to assess the caregivers' burden and the factors associated with it objectively. This was a cross-sectional survey conducted amongst 143 caregivers of patients diagnosed with psychotic disorders reporting to a psychiatric outpatient department. The investigative tool used was a 12-item ZARIT Burden Interview (ZBI) questionnaire. The frequency of schizophrenia amongst patients with psychotic disorder was 68.5%. The median age of caregivers was 50 years in the "high burden" group, 40 years in the "moderate burden" group, and 34 years in the "no/mild burden" group. The mean score of burden experienced by the caregiver was 27.5 ± 9.7. The degree of burden was high in 66% of caregivers. The caregivers were generally more females, married, less educated, and mainly parents. A high degree of burden was associated with variables viz. female gender (OR 1.77 [0.88, 3.57], P = .043), low education status (OR 2.31 [1.09, 4.91] P = .002), unemployed status (OR 2.32 [1.12, 4.78] P = .027) and, increasing age of caregiver. No significant association was found between the degree of burden and variables, viz. marital status of caregivers, duration of caregiving, and duration of patient's illness. The current study identifies variables that can predict caregiver's burden. These results also suggest the implementation of psycho-educational, community-based programs which can address the core issues associated with caregiving., Competing Interests: The authors have no funding and conflicts of interest to disclose., (Copyright © 2024 the Author(s). Published by Wolters Kluwer Health, Inc.)

Objectives: Due to substantial regional variability in available caregiving services and supports, culture and health status among informal caregivers in the USA, the study objective was to explore how rural-urban differences in aspects of caregiving-caregiving intensity, distance to care recipient, caregiver burden, caregiver health and caregiving support-vary by US Census region (Northeast, South, Midwest and West) after accounting for other social determinants of health., Design: This study was a secondary analysis of multiwave, cross-sectional study data., Setting: The data were collected on a representative sample of informal, unpaid caregivers to older adults., Participants: A sample of n=3551 informal caregivers from the National Study of Caregiving identified by older adult care recipients from waves 1 (2011) and 5 (2015) of the National Health and Aging Trends Study., Primary and Secondary Outcome Measures: Primary outcome measures were caregiving intensity (provided support for/with the number of activities of daily living (ADLs) and instrumental ADL (IADLs)) caregiver assisted with, hours of caregiving per month), caregiver burden (physical, emotional and financial), support services sought (types and total number), caregivers' self-reported health and health status (individual comorbidities and a total number of comorbidities). Analyses were stratified by US Census region and rural-urban status, as defined by the US Census Bureau, of census tract of caregiver residence., Results: Urban caregivers provided higher levels of ADL support in the Northeast (beta=0.19, 95% CI 0.03, 0.35) and West (beta=0.15, 95% CI 0.05,0.26) regions. Urban caregivers provided significantly higher levels of ADL support (p=0.020), IADL support (p=0.033) and total ADLs plus IADLs (p=0.013) than rural caregivers. Caregivers living in the South had higher amounts of monthly hours spent caregiving, ADL support, IADL support and combined ADLs plus IADLs and were more likely to have obesity, report poor or fair health, have heart conditions and experience emotional difficulty from caregiving (all p<0.001)., Conclusions: Study findings underscore caregiving's multifaceted and complex nature and identify important urban-rural and regional differences in caregiving in the USA. Healthcare providers and healthcare organisations can have an important role in identifying and mitigating the negative impacts of caregiving on caregivers' overall health. Interventions and support should be tailored to caregivers' demographic backgrounds, addressing regional differences., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Purpose: We aimed to describe the intensity of care and its consequences on informal caregivers of stroke survivors according to the degree of care receivers' functional dependence for activities of daily living; and to identify the factors associated with caregivers' care-related quality of life., Methods: Cross-sectional analysis of prospective data collected in a cost-utility study alongside the RACECAT trial in Catalonia (Spain). One-hundred and thirty-two care receiver-caregiver pairs were interviewed six months after stroke. Functional dependence for activities of daily living was measured with the Barthel index. We assessed caregivers care-related quality of life with the CarerQoL, which measures seven dimensions of subjective burden (CarerQoL-7D) and a happiness score (CarerQoL-VAS). We evaluated the association between characteristics of informal caregivers, characteristics of care receivers, and intensity of care, and the caregiver's care-related quality of life (subjective burden and happiness) in a hypothesized model using a structural equation model., Results: Of the 132 caregivers, 74,2% were women with an average age of 59.4 ± 12.5 years. The 56.8% of them were spouses. The care intensity ranged from a mean of 24h/week for mild to 40h/week for severe dependence. Most caregivers (76.3%) were satisfied with their task, regardless of dependence, but showed increasing problems in caring for severely dependent persons. Being a woman (coeff. -0.23; 95%CI: -0.40, -0.07), spending more time in care tasks (coeff -0.37; -0.53, -0.21) and care receiver need of constant supervision (coeff 0.31; -0.47, -0.14) were associated with higher burden of care, irrespective of the degree of dependence. Caregiver burden (coeff 0.46; 0.30-0.61) and care receiver anxiety or depression (coeff -0.19; -0.34, -0.03) were associated with lower caregiver happiness., Conclusions: The findings suggest the importance of developing mainly two types of support interventions for caregivers: respite and psychosocial support. Especially for women with high caring burden and/or caring for persons with high levels of anxiety or depression., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Villa-García et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Background: Caregivers of children with neurodevelopmental disorders and medical complexities (NDD-MC) coordinate care across complex multisectoral systems. Often NDD-MC children have complex behaviors, however there is limited information on coordination needs for families., Aim: The objective of this mixed methods study was to understand the needs of families with NDD-MC children., Methods and Procedures:  This sequential exploratory study obtained the perspectives of 67 caregivers of NDD-MC children using semi-structured interviews and validated questionnaires to measure family quality of life, care integration, and resource use. An adapted model using Maslow's hierarchy of needs was integrated, to understand the impacts of caregiving on quality of life., Outcomes and Results: Lack of support in caring for NDD-MC children negatively impacted family quality of life, resulting in various unmet needs, including caregiver burden, behavioural challenges, financial losses, and mental health issues. Caregivers dealt with a fragmented healthcare system that offered limited support to address coordination challenges., Conclusions and Implications: The implementation of a needs-based care coordination program is recommended to consider the health, educational, and social needs of NDD-MC children and their families. Effective care for children with complex needs should tailor support for families using Maslow's hierarchy to enhance quality of life., Competing Interests: Declaration of Competing Interest The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Purpose: To identify nursing support for caregiver burden in family caregivers of patients with cancer. Methods: This scoping review was guided by Arksey and O'Malley's six-stage scoping review framework. All available published articles from database inception to July 31, 2023 were systematically searched through PubMed, CINAHL, CENTRAL, and Ichushi-Web of the Japan Medical Abstract Society databases with additional relevant studies from the article list. Each key journal was manually searched. Results: Overall, 502 articles were screened, and 34 were finally included. The results of the qualitative thematic analysis were categorized into 7 components of nursing support: psychological and educational support, psychological and educational support using mainly non-face-to-face (Information and Communication Technology), psychological and educational support mainly using non-face-to-face (telephone) methods, mindfulness to support, support aimed at reducing caregiver stress, support for both patients and caregivers, and others. Of the 34 studies, 23 were randomized controlled trials (RCT), and the remaining 11 were non-RCTs. Conclusion: The results of the scoping review categorized nursing support for caregiver burden in the family caregivers of patients with cancer into 7 components. Future research should examine the feasibility of implementing these components., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: The family caregivers as primary caregivers play a crucial role regarding the care of cancer patients. As defined in the literature, the care burden encompasses the negative objective and subjective outcomes including psychological and physical health problems, economic and social issues, deterioration of family relationships and feelings of loss of control that arise from caregiving responsibilities., Aims: This study aims to assess the care burden and to evaluate the associated factors among family caregivers of cancer patients receiving treatment at a state hospital in Türkiye., Methods: This cross-sectional study was conducted with the family caregivers of patients undergoing treatment in the radiation oncology department of a state hospital in Türkiye. The study population consisted of 350 individuals, with a participation rate of 80%. Participants were administered a questionnaire concerning determining daily living activities and identifying the caregiving burden through their socio-demographic characteristics., Results: The care burden among primary family caregivers while the delivery of health services was severe for 85.1% of them. The average ZBI score of caregivers was 55.92 ± 14.58. It was clarified that family caregivers' burden was influenced by several factors, including the duration of caregiving, difficulties experienced while caring for the patient, and the negative impact on their daily roles., Conclusion: Our study's findings indicate the need for health professionals to support caregivers of cancer patients while over half of the caregivers were identified as having a severe level of caregiving burden. It is important to raise awareness among nurses and the oncology team with a holistic approach. In the delivery of health services, caregivers' needs should be identified first, support mechanisms should be activated and interventions should be made to meet these needs., Impact: This study's findings highlight the need to identify and problems faced by family members during caregiving. This is important for sustainable and cost-effective holistic care., Reporting Method: The results of this study are reported based on the guidelines of The Strengthening the Reporting of Observational Studies (cohort, case-control studies, cross-sectional studies) in Epidemiology (STROBE)., Implications for Practice: Our study's findings indicate the need for health professionals to support caregivers of cancer patients. It is important to raise awareness among nurses and the oncology team with a holistic approach. In the delivery of health services, caregivers' needs should be identified first, support mechanisms should be activated and interventions should be made to meet these needs., (© 2024 The Author(s). Journal of Clinical Nursing published by John Wiley & Sons Ltd.)

Background: Caregivers of patients with chronic dysphasia experience stress and guilt regarding their eating behaviors. Dysphagia rehabilitation, including minimal oral intake with tube feeding, may be vital for caregivers. This study investigated the effects of dysphagia rehabilitation on caregiver well-being and attitudes toward eating assistance., Methods: This cross-sectional questionnaire study was conducted at two dental university hospitals on caregivers of homebound patients with dysphagia undergoing rehabilitation. Caregivers' experiences, with an emphasis on guilt and psychological status, were assessed using the Apathy Scale and Patient Health Questionnaire-5 Depression Scale. Patients were evaluated at the time of the survey and rehabilitation commencement using the Barthel Index and Functional Oral Intake Scale (FOIS). Changes in FOIS scores and caregiver guilt were assessed using the Wilcoxon signed rank test and McNemar test, respectively. The impact of oral intake changes on caregiving motivation was assessed using the Fisher exact test., Results: Between August 2019 and January 2021, 55 of 100 targeted caregivers responded (median age=64.5 years). A significant difference in FOIS scores was found (median rehabilitation duration=9.7 months). Despite 25 pneumonia cases, 65% of the caregivers continued to encourage oral intake. Guilt decreased from 48% during peak dysphagia to 22% at survey time (odds ratio=0.2, 95% CI=0.04-0.70; P < 0.01). No association was found between caregiving motivation and improved oral intake., Conclusion: Severe dysphagia impacted caregiver well-being, indicating preferences for patients' oral intake. To support caregivers, healthcare professionals should explore and integrate new multidisciplinary approaches into dysphagia rehabilitation strategies., (© 2024 American Society for Parenteral and Enteral Nutrition.)

Background: Caring for individuals with chronic kidney disease (CKD) is a highly demanding task that can adversely affect the physical and psychological well-being of caregivers., Objective: This study aimed to investigate the burden experienced by caregivers of patients undergoing hemodialysis (HD) in Oman and explore the factors associated with this burden, including demographic and medical characteristics., Methods: A descriptive cross-sectional was employed. Caregiver burden was assessed, and demographic and medical variables were examined among caregivers of HD patients. A total of 326 unpaid family caregivers completed the Zarit Burden Interview scale, demographics and some medical variables. Linear multiple regression analyses were conducted to identify factors linked to caregiver burden., Results: Of the caregivers, 62.9% reported a minimal burden, 21.8% experienced mild-to-moderate burden, 8.6% faced moderate-to-severe burden, and 6.7% encountered a severe burden. The final multiple regression model demonstrated statistical significance compared to the constant (F = 8.68, p < 0.001), with eight predictors explaining 18% of the variance, and caregivers' satisfaction with health emerged as the only significant predictor., Conclusion: A substantial portion of caregivers reported minimal burden. These findings suggest the need for further in-depth investigations into factors contributing to this favourable outcome. Furthermore, caregivers' satisfaction with health was the only significant predictor of their burden. Healthcare providers need to give special attention to this point and conduct periodic assessments of the primary caregivers' health. Implementing improvements in the healthcare system based on these findings could enhance the overall caregiving experience for HD patients and their caregivers., (© 2024. The Author(s), under exclusive licence to Springer Nature B.V.)

This study aimed to determine the predictive power of religious coping of parents of children with cancer on caregiver burden, depression, anxiety, and stress in Turkey. It was designed as a descriptive and cross-sectional study, utilizing correlational analysis and regression models to explore associations between variables. Data were collected from 164 parents in the pediatric hematology-oncology clinics of a university hospital between November 2023 and March 2024. There was a negative correlation between caregiver burden score and negative and positive religious coping scores. Caregiver burden scores were positively correlated with depression, anxiety, and stress scores. Results indicated that caregiver burden, education level, employment status, family structure, family income, and age at diagnosis significantly predicted positive religious coping. For negative religious coping, caregiver burden, education level, family structure, and family income were significant predictors. This suggests that religious coping may help reduce caregiver burden, underscoring the importance of promoting constructive coping strategies to support caregivers' well-being., (© 2024. The Author(s).)

This study was conducted to determine the relationship between care burden and spiritual well-being of mothers of children with cerebral palsy and the topics of support that mothers need. This study, which was conducted as a relationship seeker, was completed in approximately 7 months. Data were collected through interviews with 270 mothers of children with cerebral palsy. A questionnaire, Spiritual Well-Being Scale and Burden Interview Scale was used to collect data. It was found that mothers needed a lot of support, such as requesting an increase in physical therapy hours and the need for financial support. There was a moderate negative relationship between SWBS and BIS (r =  - 0.39, p = 0.01). According to the results of this study, we can say that spiritual well-being is related to the care burden of mothers, so nurses caring for these children should understand the burden of the mothers of these children and evaluate spiritual well-being., (© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Research has evidenced that purpose in life helps to minimise the strains of providing informal care to a significant other, but little is known about whether this psychological resource influences the paths from stressors to the health outcomes of family caregiving and through which mechanisms it can exert this protective effect. This study aimed to explore the moderating role of purpose in life on the (mediated through adaptive coping) relationship between caregiver burden and psychological distress in haemodialysis caregivers. A cross-sectional study was conducted with a convenience sample of family caregivers (n = 173; M = 55.9, SD = 15.6 years old) of adults undergoing haemodialysis. A moderated-mediation model was computed to explore the interaction effects of purpose in life on the path between burden and distress, having adaptive coping behaviours as parallel mediators. Results showed that purpose in life had a buffering effect on the mediated (through acceptance coping) relationship between burden and distress (index of partial moderated-mediation: b simple  = -0.029, 95% bootstrap confidence interval (CI) [-0.070, -0.002]), and that this conditional effect was lowest at high levels of the moderator (at +1SD: b simple  = 0.038, SE = 0.026, 95% bootstrap CI [0.001, 0.098]). Use of emotional support (F(1,159) = 4.395, p = 0.038) and positive reframing (F(1,159) = 5.648, p = 0.019) also mediated this path. This study expands knowledge about the modifiable internal resources through which purpose in life can help promote psychosocial adjustment to the haemodialysis caregiving process. Mental health promotion initiatives aimed at this population need to consider combining different intervention approaches to foster purpose in life and train adaptive (and flexible) coping skills., (© 2024 John Wiley & Sons Ltd.)

Chinese family caregivers of people with dementia (PWD) can suffer from physical and psychological burden. This study aimed to examine the effects of logotherapy-based interventions on Chinese family caregivers of older adults with dementia to decrease caregiver burden. This mixed-methods study used a pre-experimental design with pre-posttests and semi-structured interviews. A purposive sample of 13 family caregivers from a suburban district in Shanghai was enrolled with (1) caregiver burden and (2) access and capability to use smart devices. Participants received eight online group logotherapy sessions with a focus on hope and meaning construction. Participants completed the Zarit Burden Interview, a 22-item measure of caregiver burden, before and after the intervention, and a 30-min semi-structured interview post-intervention. From the quantitative data, dementia caregivers reported severe caregiving burdens at the baseline ( M  = 54.77, SD  = 9.33). Caregiver burden significantly decreased after the logotherapy-based intervention ( M  = 52.15, SD  = 8.80, p  < .001). Two themes pertaining to participants' experiences in intervention emerged from the qualitative data: (1) improved attitudes toward suffering, and (2) enhanced sense of meaning in life and hope. The cultural relevance of logotherapy to Chinese familism and Confucianism may further enhance its feasibility in the Chinese context.

This study investigated the changes in caregiver burden during the coronavirus disease 2019 (COVID-19) pandemic. The study sample included 827 caregivers for older adults (65+) from the National Health and Aging Trends Study (NHATS) COVID-19 data set. We used paired t -tests to analyze data. The caregivers' assistance in basic and instrumental activities of daily living for care recipients, as well as the amount of time they provided, increased significantly (all p s < .001) during the pandemic compared with before. Approximately, 40% of caregivers reported changes in the amount of assistance they provided during the pandemic. Financial, emotional, and physical difficulties among caregivers have increased, with emotional difficulties being the most frequently reported. The majority of caregivers reported not utilizing any social services during the pandemic. The pandemic may have heightened the caregiver burden. It is important to ensure that caregivers have access to and utilize social services in a physically and psychologically safe manner., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Perceived threat of Alzheimer's disease and related dementias (ADRD) has been found a widespread phenomenon in developed countries, but has not yet been fully explored in developing countries. Analyzing data from 300 family caregivers of older adults with cognitive impairment in China, this study found caregiver burden was positively associated with the perceived threat of ADRD, and this association was buffered by higher family income and longer caregiving time. To alleviate undue ADRD concerns, it suggests expanding respite care and community elder care beds, and initiating education programs on reducing unnecessary worries about developing ADRD.

Objective: To characterize the profile of the informal primary caregiver (IPC) of adult patients with type2 diabetes (T2D) and the possible factors associated with caregiver collapse (CC)., Design: Observational, descriptive, cross-sectional and analytical study. SITE: Ambulatory Care Medical Unit., Participants: Mexican CPIs of adult patients with T2D., Main Measurements: Data were collected through a prolective design using the Zarit scale and a structured survey on sociodemographic factors. A descriptive statistical analysis and univariate and multivariate logistic regression models were performed., Results: The CPI profile is assumed by: women, people aged 36-58, daughters, people with a secondary and high school educational level, married, Catholic, with income <8,900 Mexican pesos, own home, inhabited by a maximum of 5 inhabitants, with support networks, who have dedicated >5years to the care of their patient, without training and with chronic diseases. The risk factors that increase the risk of CC are: being a woman (OR=11.03; 95%CI: 1.49-81.95), having a history of more than 5years of having assumed the role of caregiver (OR=2, 65; 95%CI: 1.07-6.55), living in one's own house (OR=3.03; 95%CI: 1.04-8.82), with 6 or more inhabitants (OR=2.41; 95%CI: 1.08-5.38). The support of other family members and/or friends was associated as a protective factor (OR=0.15; 95%CI: 0.07-0.33)., Conclusions: Prevention programs are required to avoid CC and complications, as well as interventions to improve the quality of life of the CPI and patients in care, incorporating strategies to generate and/or increase their family and social support networks., (Copyright © 2024 The Authors. Publicado por Elsevier España S.L.U. All rights reserved.)

The caregiving burden experienced by informal caregivers of individuals with schizophrenia (ICIWS) can affect their perceived occupational balance (OB). This study examines the differences in OB among ICIWS with different caregiving burden levels. This cross-sectional study was conducted with a sample of 149 ICIWS. The Occupational Balance Questionnaire 11-Turkish Version (OBQ11-T) was used to assess the participants' OB. The Zarit Caregiver Burden Scale was employed to evaluate caregiving burden levels. Statistically significant differences were found in the total score of OBQ11-T, Item 3 (time for doing things wanted), Item 5 (having sufficient time for doing obligatory occupations), and Item 9 (balance between obligatory/voluntary occupations) between the severe and little caregiving burden groups ( p < .05). Caregiving for individuals with schizophrenia can lead to varying levels of caregiving burden, which negatively affects OB. Occupational therapists working with ICIWS should assess OB and address OB-related challenges to alleviate caregiver burden., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objectives: Identify associations between psychological concerns and empathy (affective and cognitive domains) in paid and unpaid caregivers of older people., Methods: A systematic review of the literature was conducted. Searches were performed in the Pubmed, Web of Science, PsycINFO, Scopus and Embase databases using the search terms " Empathy," "Caregiver," "Depression," "Burnout," Anxiety", Caregiver Burden" and "Psychological Stresses" and the Boolean operators "AND" and "OR." No restrictions were imposed regarding language or year of publication. This review was registered in PROSPERO (CRD42021267276)., Results: Twelve articles met the inclusion criteria and were included in the present review. Most studies involved the participation of unpaid caregivers. Higher levels of empathy were associated with greater psychological concerns. Regarding affective empathy, direct associations were found with depressive symptoms, anxiety and stress. In contrast, high levels of cognitive empathy were associated with fewer depressive symptoms as well as less stress and burnout syndrome., Conclusions: An association was found between greater affective empathy and psychological impairment in caregivers of older people. Higher levels of cognitive empathy can help minimize psychological concerns., Clinical Implications: Working on empathic ability among caregivers of older people in different environments can contribute positively to the emotional impact of caregiving. Moreover, empathetic cognitive training among caregivers can serve as a strategy to minimize the negative consequences of the impact of caregiving.

Objectives: Evidence-based interventions for dementia caregivers, such as the Savvy Caregiver Program (SC), seek to address skills and knowledge deficits, caregiver burden, depressive symptoms, and grief. Little research has examined mechanisms by which these interventions accomplish their goals. Caregiver preparedness may be a possible mechanism by which caregiver interventions may confer benefits., Methods: The sample included 76 dementia caregivers who completed the 6-session SC. Participants completed the Anticipatory Grief Scale, Center for Epidemiological Studies-Depression Scale, the Preparedness for Caregiving Scale, and the Zarit Burden Interview-Short Form., Results: A repeated measures ANOVA was utilized to determine the interaction between baseline scores and pre-post change in caregiver preparedness. Analysis significantly predicted caregiver burden, ( F (1)  = 6.68, p =.012, partial η 2 =.10), depressive symptom endorsement, ( F (1)  = 6.41, p =.014, partial η 2 =.09, and anticipatory grief, ( F (1)  = 6.22, p =.02, partial η 2 =.1), post-treatment., Conclusions: Pre-post change in caregiver preparedness significantly predicted pre-post change across measures of caregiver burden, depressive symptom endorsement, and anticipatory grief. Findings suggest that caregiver preparedness may be one mechanism by which the SC confers positive outcomes. These findings provide an empirical and theoretical basis for tailoring future dementia caregiver interventions., Clinical Implications: Clinical Interventions may seek to improve caregiver preparedness and subsequent outcomes through utilization of programs like SC.

Background: Time in healthcare facilities is associated with worse patient quality of life (QoL); however, impact on family caregiver QoL is unknown. We evaluate care recipient days not at home-days in the emergency department (ED), inpatient (IP) care, and post-acute care (PAC)-to understand how care recipient days not at home correspond to family caregiver QoL., Methods: Secondary data were linked to care recipient utilization data. Elastic net machine learning models were used to evaluate the impact of a single day of utilization in each setting on binary QoL outcomes. We also compared composite weighted and unweighted "days not at home" variables. Two time periods, 6 and 18 months, were used to predict three caregiver QoL measures (self-rated health, depressive symptoms, and subjective burden)., Results: In the 6-month timeframe, a single day of ED utilization was associated with increased likelihood of poor QoL for all three assessed outcomes (range: 1.4%-3.2%). A day of PAC was associated to a modest degree with increased likelihood of caregiver burden (0.2%) and depressive symptoms (0.1%), with a slight protective effect for self-rated health (-0.1%). An IP day had a slight protective effect (-0.2 to -0.1%). At 18 months, ED and IP had similar, albeit more muted, relationships with caregiver burden and depressive symptoms. PAC had a slight protective effect for caregiver burden (-0.1%). Cumulative days in all settings combined generally was not associated with caregiver QoL., Conclusion: Whereas total care recipient time away from home had some negative spillovers to family caregivers, the countervailing effects of unique settings on caregiver QoL may mask net QoL effects. This finding limits the utility of a single care recipient home time measure as a valid caregiver-centered measure. Considering cumulative care recipient time in individual settings separately may be needed to reveal the true net effects on caregiver QoL., (Published 2024. This article is a U.S. Government work and is in the public domain in the USA.)

Design: Retrospective cohort study., Objective: Determine the course of burden and psychological distress of significant others (SOs) during initial spinal cord injury (SCI) rehabilitation and to predict the caregiver's burden at discharge with characteristics of SOs and persons with SCI (PSCIs) at the start of rehabilitation., Setting: Rehabilitation center Sint Maartenskliniek, Nijmegen, The Netherlands., Methods: All PSCIs admitted for initial rehabilitation between October 2020 and December 2022 were included. One of their SOs were asked to complete a set of screening questionnaires, collected in our routine context of care., Results: A total of 181 PSCIs (62% male, average age 60 years, 80% incomplete SCI, 60% paraplegia and 32 days after injury) and 158 SOs (40% male, average age 57 years) were screened at admission, and 145 and 93 at discharge, respectively. For SOs, the average caregiver's burden and feelings of depression and anxiety did not change during admission. The caregiver's burden score at discharge was best predicted by the burden score at admission, explaining 20% (P < 0.001) of the variance. An additional 13% (P = 0.02) of the variance was explained by other SO and PSCI variables gathered in this study., Conclusion: The caregiver's burden in this group of SOs during rehabilitation, was higher than that of a representative group in the chronic phase. On both assessments, around 20% scored above the cutoff. Scores of psychological distress are comparable to former studies. Standard screening of SOs during initial SCI rehabilitation is important to help the interdisciplinary team identify SOs at risk, and target their treatment during inpatient rehabilitation., (© 2024. The Author(s), under exclusive licence to International Spinal Cord Society.)

Background: Caregivers of children with chronic kidney disease (CKD) in low resource settings must provide complex medical care at home while being burdened by treatment costs often paid out-of-pocket. We hypothesize that caregiver burden in our low resource setting is greater than reported from high income countries and is associated with frequent catastrophic healthcare expenditure (CHE)., Methods: We conducted a mixed-methods study of primary caregivers of children with advanced CKD (stage 3b-5) in our private-sector referral hospital in a low resource setting. We assessed caregiver burden using the Pediatric Renal Caregiver Burden Scale (PRCBS) and measured financial burden by calculating the proportion of caregivers who experienced CHE (monthly out-of-pocket healthcare expenditure exceeding 10% of total household monthly expenditure). We performed a qualitative reflexive thematic analysis of caregiver interviews to explore sources of burden., Results: Of the 45 caregivers included, 35 (78%) had children on maintenance dialysis (25 PD, 10 HD). Mean caregiver burden score was 141 (± 17), greater than previously reported. On comparative analysis, PRCBS scores were higher among caregivers of children with kidney failure (p = 0.005), recent hospitalization (p = 0.03), non-earning caregivers (p = 0.02), caring for > 2 dependents (p = 0.009), and with high medical expenditure (p = 0.006). CHE occurred in 43 (96%) caregivers of whom 37 (82%) paid out-of-pocket. The main themes derived relating to caregiver burden were severe financial burden, mental stress and isolation, and perpetual burden of concern., Conclusion: Parents of children with CKD experienced severe caregiver burden with frequent CHE and relentless financial stress indicating an imminent need for social support interventions., (© 2024. The Author(s), under exclusive licence to International Pediatric Nephrology Association.)

Dementia spousal caregivers are at risk for adverse mental and physical health outcomes. Caregiver burden, anticipatory grief, and proinflammatory cytokine production may contribute to depressive symptoms among caregivers. People who report childhood trauma are more likely to have exaggerated stress responses that may also contribute to depressive symptoms in adulthood. This study aimed to test whether the relationship between whole-blood cytokine production and depressive symptoms is strongest in caregivers who report high levels of childhood trauma., Methods: A sample of 103 dementia spousal caregivers provided self-report data on demographics, health information, caregiver burden, anticipatory grief, and depressive symptoms. We also determined lipopolysaccharide-induced whole-blood cytokine production as the primary measure of immune cell reactivity. We measured interleukin-1β (IL-1β), interleukin-6 (IL-6), tumor necrosis factor-α (TNF-α), and interleukin-10 (IL-10) and converted z-scores of each cytokine into a composite panel. We regressed depressive symptoms on proinflammatory cytokine production, caregiver burden, and anticipatory grief, adjusting for demographic and health-related covariates., Results: Whole-blood cytokine production and childhood trauma were associated with depressive symptoms. Childhood trauma moderated the relationship between whole-blood cytokine production and depressive symptoms. Whole-blood cytokine production was only associated with depressive symptoms at mean and high levels of childhood trauma, but not at low levels of childhood trauma. The main effects of burden and anticipatory grief on depressive symptoms were strongest for caregivers reporting high levels of childhood trauma., Discussion: Childhood trauma has lasting impacts on psychosocial experiences later in life and has effects that may confer susceptibility to inflammation-related depression. Our findings contribute to ongoing efforts to identify risk factors for adverse mental health in dementia spousal caregivers., Competing Interests: Declaration of Competing Interest The authors have no conflicts of interest to disclose. This research was conducted within a larger study funded through the National Institutes on Aging [R01AG062690]., (Copyright © 2024 Elsevier Ltd. All rights reserved.)