Search

Competing Interests: Competing interests: None declared.

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).)

Objectives: To investigate the relationship among patients' apathy, cognitive impairment, depression, anxiety, and caregiver burden in amyotrophic lateral sclerosis (ALS)., Design: A cross-sectional study design was used., Setting: The study was conducted at a tertiary hospital in Wuhan, Hubei, China., Participants: A total of 109 patients with ALS and their caregivers were included., Outcome Measures: Patients with ALS were screened using the Edinburgh Cognitive and Behavioural Screen, Beck Depression Inventory-II, Generalised Anxiety Disorder-7 and Apathy Scale to assess their cognition, depression, anxiety and apathy, respectively. The primary caregivers completed the Zarit Burden Interview. The association between apathy, cognitive impairment, depression, anxiety and caregiver burden was analysed using logistic regression. Mediation models were employed to investigate the mediating effect of patients' apathy on the relationship between depression/anxiety and caregiver burden., Results: Patients in the high caregiver burden group exhibited significantly higher levels of depression, anxiety and apathy compared with those in the low caregiver burden group (p < 0.05). There was a positive association observed between caregiver burden and disease course (rs=0.198, p < 0.05), depression (rs=0.189, p < 0.05), anxiety (rs=0.257, p < 0.05) and apathy (rs=0.388, p < 0.05). There was a negative association between caregiver burden and the Revised ALS Functional Rating Scale (rs=-0.275, p < 0.05). Apathy was an independent risk factor for higher caregiver burden (OR 1.121, 95% CI 1.041 to 1.206, p < 0.05). Apathy fully mediated the relationship between depression and caregiver burden (β=0.35, 95% CI 0.16 to 0.54, p < 0.05) while partially mediating the relationship between anxiety and caregiver burden (β=0.34, 95% CI 0.16 to 0.52, p < 0.05)., Conclusions: Apathy, depression and anxiety exerted a detrimental impact on caregiver burden in individuals with ALS. Apathy played a mediating role in the relationship between depression and caregiver burden and between anxiety and caregiver burden. These findings underscore the importance of identifying apathy and developing interventions for its management within the context of ALS., 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: Family caregivers play a significant role in providing care for these people at home and need new evidence on the outcomes of their caregiving. Caregiving for people with chronic psychiatric disorders, especially Bipolar type I Disorder (BD-I), is a major challenge in the healthcare system. This study aimed to examine the relationship between caregiver burden, resilience and optimism in family caregivers of patients with BD-I., Methods: This study used a cross-sectional design and involved 209 family caregivers of people with BD-I by convenience sampling method. Data were collected using the Zarit Burden Inventory (ZBI), Connor-Davidson Resilience Scale (CD-RISC), and Revised Life Orientation Test (LOT-R). The participants were selected from the list of family caregivers covered by the Ibn Sina Hospital's health clinic in Mashhad, Iran. The data were analyzed using descriptive statistics and multiple regression analysis with a significance level of 0.05., Results: The average ages of the caregivers and their patients were 45.43 (13.34) and 36.7 (14.05), respectively. The average caregiver burden score was 41.92 (19.18), which was moderate (31 to 60). The predictors of caregiver burden in this study were caregiver-related factors such as optimism (p < 0.001, β = 0.25) and employment status (housewife: p = 0.038, β = 0.43; self-employed: p = 0.007, β = 0.12; retired: p < 0.001, β = 0.23), and patient-related factors such as the presence of psychotic symptoms (p < 0.001, β = 0.33), daily caregiving hours (p < 0.001, β = 0.16), history of suicide attempts (p = 0.035, β = 0.43), and alcohol consumption (p < 0.001, β = 0.85). These variables explained 58.3% of the variance in caregiver burden scores., Conclusion: The study concluded that family caregivers of people with BD-I had moderate levels of caregiver burden and low resilience, influenced by various factors related to themselves and their patients. Psychological education interventions within the framework of mental health support systems are recommended to reduce caregiver burden in these people., (© 2024. The Author(s).)

Objectives: Previous studies have examined the psychological burden of caregivers of patients with dementia. However, although many caregivers struggle to assist patients with dementia with medication management, the relationship between assisting such patients with taking their medicines and the caregiver psychological burden is understudied. Therefore, this study identified the association between caregivers' psychological burden and assisting patients with dementia with taking medication., Methods: A cross-sectional survey was conducted among caregivers of patients with dementia in Japan. The survey questionnaire included questions that assessed the symptoms of patients with dementia, their status of taking medication through medication assistance from caregivers, and caregivers' psychological burden using the Kessler Psychological Distress Scale and the Japanese version of the Perceived Stress Scale., Key Findings: A total of 57 caregivers participated in the study. Higher Kessler Psychological Distress Scale scores were significantly associated with unsuccessful assistance with taking regular medication (β = 0.35, 95% confidence interval [CI]: 2.23-12.0, P < .05), depressive symptoms (β = 0.26, 95% CI: 0.10-8.53, P < .05), and irritability (β = 0.38, 95% CI: 2.71-11.5, P < .05). Likewise, higher scores on the Japanese version of the Perceived Stress Scale were significantly associated with irritability (β = 0.37, 95% CI: 1.87-12.5, P < .05) among patients with dementia., Conclusion: The findings suggest that caregiver psychological burden is associated with unsuccessful assistance with taking regular medication for patients with dementia., (© The Author(s) 2024. Published by Oxford University Press on behalf of the Royal Pharmaceutical Society. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

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).)

Children with Type 1 diabetes (T1D) and their parent-caregivers often experience diabetes distress due to the daily demands of diabetes management. Regular screening for diabetes distress is needed to prevent the deterioration of metabolic control and the development of mental health disorders. The aim of this analysis was to examine the psychometric properties of the German versions of the Problem Areas in Diabetes Scale for Children (PAID-C) and for caregiver burden in Parents (P-PAID-C). Data were collected from 136 children aged 7-12 years (46.7% females) and 304 parents (Mage = 42.9 (SD 6.1) years; 78% mothers) by using linguistically translated questionnaires in a multicenter study. Confirmatory factor analysis and correlational analyses were conducted. Results confirmed the two-factor model for the PAID-C and the four-factor model for the P-PAID-C with a slight modification. Cronbach's αs for children and parents were 0.88 and 0.92, respectively. The PAID-C and P-PAID-C scores had small positive associations with HbA1c (rs = .220 and .139, respectively, all p < .05) and strong inverse association with the KIDSCREEN-10 index (r = -.643 and -.520, respectively, all p < .001). P-PAID-C scores increased with increasing depressive symptoms measured in nine-item Patient Health Questionnaire among parents (rs = .534, p < .001). The scores produced by the German PAID-C and P-PAID-C were reliable and valid in measuring diabetes burdens. These German versions of PAID can be utilized to assess diabetes-specific distress and to design interventions for children and their parents experiencing high levels of diabetes distress. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Background: Providing care for people with dementia incorporates a level of burden which can affect quality of life for both the caregiver and the recipient of care. This study measures the level of burden experienced by Jordanian caregivers for people with dementia and explore related predictors., Methods: Through a cross-sectional survey, participants were invited through convenience sampling to participate in a structured interview., Results: A total of 406 participants completed the survey. According to Zarit Burden Interview, the mean burden score of the sample was 26.2 (SD = 16.2). This score falls under the mild to moderate burden level. Older age of the patient, severe dementia, lower number of caregivers, if the caregiving negatively affected family relations, and if the caregiving negatively affected jobs, were significant predictors of burden., Conclusion: Caregivers in the current study reported no burden to a minimum burden. This result does not mean that these caregivers have no or minimal stress or that they do not have psychological needs; on the contrary, these results call for more attention to providing extra psychological and emotional support to caregivers of patients with dementia in order to decrease the burden level and maintain their efforts in caregiving. Future studies are required to discern the shape and context of unmet caregiver needs, assessment, and support., (© 2024 Japanese Psychogeriatric Society.)

Introduction/aims: The care burden of people living with amyotrophic lateral sclerosis (pALS) increases with disease progression. This study aimed to investigate the home care status and preparedness of care partners of pALS (cALS) in Korea., Methods: An online survey was conducted with family care partners of patients diagnosed with ALS for over 1 year in 2022. The data collected included care time, depression evaluated using the patient health questionnaire-9 (PHQ-9), preparedness for caregiving scale (PCS), and caregiver competence scale (CCS). Results were compared based on whether the pALS underwent a tracheostomy or not., Results: Ninety-eight cALS of 98 pALS participated in the study, of whom 59 pALS had undergone tracheostomy. Among the cALS, 60.2% were spouses, and 34.7% were children. The cALS took care of the patients for 13 (8-20) hours/day (median, interquartile range [IQR]) on weekdays and 15 (10-24) h/day on weekends. Among the cALS, 91.8% were depressed, and 28.6% had severe depression. The median (IQR) PCS and CCS scores were low (11/32 (8-15) and 8/20 (8-11), respectively), and both were lower in those caring for patients without than with tracheostomy (p < .001 and p < .02, respectively). Most cALS (77.6%) wished to continue caring for their pALS at home., Discussion: Family care partners of pALS spend more than half of each day caring for patients and are often depressed. Most cALS preferred providing care at home, but felt ill-prepared. Designing home-based medical care is necessary for pALS to thrive at home., (© 2024 The Author(s). Muscle & Nerve published by Wiley Periodicals LLC.)

Background: Family caregivers of older adults living with dementia are known to experience higher burden levels. Methods: This empirical study conducted a sub-group analysis of burden levels of 97 family caregivers by the dementia severity of care recipients. Family caregivers were assessed before and after the 9-week Stress-Busting Program for Family Caregivers TM (SBP). Results: Family caregivers of older adults living with severe dementia had the highest baseline Zarit Burden Interview (ZBI) score of 27.7 which decreased to 25.0 ( p < .05); family caregivers of those living with moderate dementia had a baseline ZBI score of 24.3 which decreased to 20.4 ( p < .01); and family caregivers of those living with mild dementia had the lowest baseline ZBI score of 21.0, which decreased to 18.0 ( p < .01). Conclusion: The SBP intervention was associated with a 15% reduction in burden scores for family caregivers of older adults living with dementia., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objectives: To investigate the associations between caregivers' burden, family quality of life (QoL), and siblings' QoL in Brazilian families of children with cerebral palsy, and to analyze siblings' QoL using as a parameter the QoL of typically developed Brazilian children., Methods: It was a cross-sectional study. The 212 families, 212 caregivers and 131 siblings completed the Family Quality of Life Scale, Burden Interview, and KIDSCREEN-27 Child and Adolescent Version and Parents Version questionnaires at a neurorehabilitation center in southeast Brazil. Univariable and multivariable models were used., Results: Family QoL significantly worsened as caregivers' burden increased (95 % CI -0.66 to -0.38). Caregivers' burden was significantly lower with increasing family QoL scores (95 % CI -0.52 to -0.30). Self-reported siblings' QoL was significantly worse than that of their typically developed peers (95 % CI -7.6 to -3.6). Self-reported siblings' QoL was significantly lower as siblings' age (95 % CI -2.52 to -0.59) and caregivers' burden (95 % CI -0.35 to -0.05) increased. Parent-reported siblings' QoL was significantly lower with increasing caregivers' burden (95 % CI -0.45 to -0.16) and higher as family QoL increased (95 % CI 0.09 to 0.37)., Conclusions: The cross-sectional nature of these data precludes any statement of causality. Family QoL worsened with higher caregivers' burden levels. Lower caregivers' burden scores were associated with a higher family QoL. Siblings' QoL was impaired as compared to typically developed peers, worse among older siblings, and as caregivers' burden increased and better with higher family QoL levels. Future multicenter studies may validate the generalizability of the present findings., Competing Interests: Conflicts of interest The authors declare no conflicts of interest., (Copyright © 2024. Published by Elsevier Editora Ltda.)

Aims: The objective of this study was to examine the relationship between caregiving burden and pre-death grief, with a specific focus on adult-child caregivers in mainland China. Additionally, the study explored whether coping strategies played a mediating role in this correlation., Methods: A convenience sample of 320 adult-child caregivers of older parents with dementia from Kunming, mainland China, was recruited for the study. Data were collected using the Chinese version of the Marwit-Meuser Caregiver Grief Inventory-Short Form, the Burden Scale for Family Caregivers, and the Ways of Coping Checklist-Revised., Results: Results using linear regression and multiple mediation analysis with Hayes' process model indicated that caregiving burden was positively related to pre-death grief and that active coping mediated the relationship between them. In the female group, active coping partially mediated the association between caregiving burden and pre-death grief, but in the male group, this mediating effect did not exist., Conclusion: The study found evidence supporting the link between caregiving burden and pre-death grief among adult-child caregivers of older parents with dementia in mainland China. Furthermore, the caregiving burden prevented the use of active coping, and this decrease in coping increased the perception of pre-death grief. These associations only existed in the female group., Implications: This paper presented the importance of active coping skills in the dementia caregiving process., Impact: The findings of this study emphasize the necessity for health practitioners to provide targeted interventions regarding pre-death grief among dementia caregivers and strengthen caregivers' active coping strategies to reduce their pre-death grief. Community-based and personal care support services should be promoted to alleviate their caregiving burden., Reporting Method: We have adhered to the transparent reporting of evaluations with quantitative design statements and the corresponding checklist was followed. PATIENT OR PUBLIC CONTRIBUTION: 'No patient or public involvement'., (© 2024 The Authors. Journal of Advanced Nursing published by John Wiley & Sons Ltd.)

This mixed-methods study evaluated a peer-led support group for ED caregivers; the Eating Disorders Families Australia strive support groups. Quantitatively, 110 past or current strive attendees completed an online survey assessing their own and their care recipients' demographic profiles, strive's impact on caregiving experiences, and caregivers' psychological distress, burden, caregiving skills and self-efficacy. Qualitative assessment comprised open-ended survey questions about caregivers' strive experiences, reinforced by in-depth focus group assessment of nine participants. Quantitative analyses revealed that participants felt more confident and supported, and less isolated in their caregiving since attending strive. Caregivers displayed mid-range psychological distress and caregiver burden, and moderate caregiver skills and self-efficacy. Qualitatively, the most helpful aspects of strive were the shared experience among participants, education, and support. The most difficult elements were emotional distress and overly dominant members. Reflections discussed the necessity of caregiver support and factors impacting strive attendance. Participants recommended resuming face-to-face contact and differentiating groups based on participant characteristics (e.g. care recipients' age/stage of illness). The current findings provide support for the importance and overall positive contribution of support groups led by caregivers, such as strive., (© 2024 The Authors. European Eating Disorders Review published by Eating Disorders Association and John Wiley & Sons Ltd.)

The effective treatment in the early stages of schizophrenia is of critical importance to improve the prognosis. Schizophrenia affects patients' relatives too. The effects of early or late initiation of long-acting injectable antipsychotics (LAI-APs) on the patient have been shown, yet their effects on the caregiver are still unknown. We aimed to determine how the time of initiation of LAI-APs affects the caregiver burden by comparing the patients who were started on LAI-APs in the first 5 years of diagnosis and those who were started at a later period. Patients were classified as 'early-LAI' and 'late-LAI' according to the time of initiation of a LAI-AP. Their caregivers were also classified as the same way, as 'caregiver-early' and 'caregiver-late' and were compared in terms of caregiver burden. The quality of life, depression, anxiety, and caregiver burden scores of the caregiver-late group were significantly worse. The time of initiation of LAI-APs and the functioning levels of the patients were found to be determinant factors for the caregiver burden. This is the first study to investigate the effects of LAI-AP's initiation time on the caregivers to our knowledge. The use of LAI-APs in the early stages is associated with better outcomes for the caregiver., (Copyright © 2023 Wolters Kluwer Health, Inc. All rights reserved.)

The rate of usage of community elderly care services in China is low, and past studies about the effects of these services on caregiver burden domestically are few. This study used a large sample of Beijing census data ( n  = 55,634) to examine the impact of these services on caregiver burden. Logistic regression and propensity score matching were used to estimate the effects. The results showed that meal assistance, respite care, and spiritual comfort are all significantly associated with a lower likelihood of perceived emotional burden among caregivers, while only respite care is very significantly associated with a lower likelihood of feeling physically burdened. However, the effects of these services on caregiver burden also depend on the activities of daily living performance and location of residence of the care recipients. The practical implications for policy makers are discussed., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background : The causes of mental health problems among mothers of children with chronic kidney diseases (CKD) associated with childcare are still not fully understood. This study, thus, has aim to assess the intensity of caregiver burden, depression and quality of life levels in mothers of children with CKD compared to a control group. It also aims to identify determinants associated with mental health outcomes. Methods: Mothers of children diagnosed with CKD who were followed up in Pediatric Nephrology outpatient clinics were included as the case group. Mothers with similar demographic characteristics were taken as the control group. During the study, 72 children with CKD, 78 control children and their mothers were enrolled. The study data was obtained using the Sociodemographic Data Form (SDF) developed by the researchers, the Zarit Burden Interview (ZBI), the Beck Depression Inventory (BDI), and The World Health Organization Quality of Life (WHOQOL-Bref). Results: The groups did differ significantly in terms of maternal psychopathology ( p  = .024). The most common maternal psychopathology among mothers was Major Depressive Disorder. Mothers of children with CKD had significantly higher level of caregiver burden and depression levels. Quality of life levels among mothers of children with CKD were significantly decreased compared to controls. Caregiver burden was found to predict quality of life in mothers of children with CKD (β = -0.539; p  < .050). Conclusion: Caregiving burden, depression, and poor quality of life are common among mothers of children with CKD. Addressing caregiver burden may be beneficial for quality life of mothers.

Background: Home enteral nutrition (HEN) patients often rely heavily on caregivers (CGs), whose quality of life (QoL) is significantly impacted. This study aimed to identify potentially modifiable factors influencing the QoL of CGs of HEN patients., Methods: A multicentre, cross-sectional study was conducted in three home nutrition centers from Jan 2021 to Jan 2022. We enrolled 90 CGs of HEN patients, collecting data on QoL (WHOQOL-BREF), depression (Beck Depression Inventory), CG burden (Zarit Burden Interview), sleep quality (Pittsburgh Sleep Quality Index), stress (Perceived Stress Scale), life satisfaction (Satisfaction With Life Scale) and financial status., Results: The mean age of CGs was 54.53 years, with 76% being female. 19% of CGs rated their QoL as poor, and 57% had depression. Multivariate regression analysis showed that financial satisfaction (β = 0.14, p < 0.01) and depression (β = -0.03, p < 0.001) were significant predictors of QoL (R 2  = 0.6). Depression correlated with CG burden (r = 0.54, p < 0.001), poor sleep quality (r = 0.47, p < 0.001), stress (r = 0.68, p < 0.001), and financial satisfaction (r = -0.39, p = 0.001). The average monthly income per person was $663.3 and 51.2% of CGs were not satisfied with their financial situation. Lower income was correlated with stress (r = -0.298, p = 0.023). CG burden was associated with financial satisfaction (r = -0.373, p < 0.001), quality of sleep (r = 0.296, p = 0.005) depression (r = 0.54, p < 0.001), stress (r = 0.5, p < 0.001) and satisfaction with life (r = -0.389, p < 0.001)., Conclusions: CGs of HEN patients face substantial challenges impacting their QoL, particularly financial stress and depression. Addressing these issues through comprehensive support systems is crucial to improve CG well-being and, subsequently, patient care outcomes., Competing Interests: Conflict of interest S. Klek has received speaker's honoraria from Baxter, Braun, Fresenius Kabi, Nestle, Nutricia, Shire, and Vipharm. M. Folwarski has received speaker's honoraria from Baxter, Braun, Fresenius Kabi, Nestle, Nutricia. W. Szafrański has received speaker's honoraria from Baxter, Braun, Fresenius Kabi, Nestle, Nutricia. The rest of the authors declare no conflict of interest., (Copyright © 2024 The Author(s). Published by Elsevier Ltd.. All rights reserved.)

The study aimed to explore the relationship between family resilience, post-traumatic growth(PTG), and caregiver burden among family caregivers of stroke survivors. Researchers conducted a cross-sectional study to recruit 253 family caregivers of stroke survivors from a public hospital in Shandong Province, China. Caregivers completed sociodemographic information, the Shortened Chinese Version of the Family Resilience Assessment Scale, the Post-traumatic Growth Inventory, and the Zarit Caregiver Burden Interview. We used Amos 24.0 to construct structural equation models and examine the mediating effects of stroke survivors' post-traumatic growth. Family resilience was positively associated with post-traumatic growth, and both family resilience and post-traumatic growth were negatively associated with caregiver burden. Post-traumatic growth partially mediated the relationship between family resilience and caregiver burden, and the mediating effect accounted for 21.27% of the total effect. Targeted interventions should address family resilience and post-traumatic growth as protective factors of caregiver burden.

Background: The caregiving scholarship widely acknowledges informal caregivers' contributions to maintaining older adults' health and well-being. However, informal caregivers encounter economic, physical, social, financial and psychological challenges when caring for older adults. The caregiving literature has shown variations in caregiving intensity and motivation between rural and urban informal caregivers of older adults. This situation is likely to result in rural-urban disparities in caregiver burden. However, the literature on predictors of caregiver burden is more focused on demographic, socio-economic, caregiving and health-related factors with very little attention to geographical dynamics. For this reason, the effects of demographic, socio-economic, caregiving, and health-related factors on the variations in caregiver burden between rural and urban informal caregivers of older adults are yet to be known in the sub-Saharan African context, including Ghana. Notably, the impact of geographical location on caregiver burden is mainly missing in the informal caregiving literature in Ghana. Situated within the stress process model, we determine the association between geographical location and caregiver burden among informal caregivers of older adults in Ghana., Methods: This study employed data from a large cross-sectional survey on informal caregiving, health, and healthcare among caregivers of older adults aged 50 years or above (N = 1,853) in Ghana. We selected the World Health Organization Impact of Caregiving Scale to measure caregiver burden. Generalized multivariable linear regression models were employed to determine the association between geographical location and caregiver burden among informal caregivers of older adults. We reported beta values and standard errors with significance levels of 0.05 or less., Results: The results showed that rural informal caregivers of older adults significantly have a decreased caregiver burden compared to urban informal caregivers (β = -1.64; SE = 0.41). Also, participants across all the self-rated health categories (poor/very poor: β = 12.63; SE = 1.65; fair: β = 9.56; SE = 1.07; good: β = 11.00; SE = 0.61, very good: β = 7.03; SE = 0.49) have a significantly increased caregiver burden for the full sample and for both rural (poor/very poor: β = 13.88; SE = 2.4; fair: β = 6.11; SE = 1.62; good: β = 9.97; SE = 0.96, very good: β = 6.06; SE = 0.71) and urban (poor/very poor: β = 11.86; SE = 2.25; fair: β = 12.33; SE = 1.42; good: β = 11.80; SE = 0.79, very good: β = 7.90; SE = 0.67) participants. This study further revealed that participants with no financial support needs reported a decreased caregiver burden compared to those with financial support needs for the full sample (β = -2.92, p-value < 0.01) and for both rural (β = -3.20; p-value < 0.01) and urban (β =-2.70; p-value < 0.01) participants., Conclusion: The findings from this study underscore geographical location differences in caregiver burden among informal caregivers of older adults in Ghana. Given these findings, the need to consider geographical location variations in providing welfare and health support programs to lessen caregiver burden among informal caregivers of older adults is welcomed. In line with the stress process model, such welfare and health programs should consider background, context, and stressor factors that contribute to variations in caregiver burden between rural and urban informal caregivers of older adults in Ghana and other sub-Saharan African countries., (© 2024. The Author(s).)

Introduction: Neurofibromatosis type 1 (NF1) is a rare genetic disorder, with lack of evidence of disease burden in China. We aimed to describe the economic burden, health-related quality of life (HRQL), and caregiver burden of NF1 patients in China., Methods: We conducted an online cross-sectional survey employing the China Cloud Platform for Rare Diseases, with 223 caregivers of NF1 pediatric patients (patients under 18), and 226 adult patients. Economic burden was estimated using direct and indirect costs related to NF1 in 2021, and the Work Productivity and Activity Impairment Questionnaire: General Health V2.0 (WPAI-GH). HRQL measures included EQ-5D-Y proxy version and PedsQL ™ 4.0 Generic Core Scales (PedsQL GCS) proxy version for pediatric patients, and EQ-5D-5L and PedsQL ™ 3.0 Neurofibromatosis Module (PedsQL NFM) for adult patients. Caregiver burden was estimated by Zarit Burden Interview (ZBI)., Results: For pediatric patients, the average direct cost in 2021 was CNY 33,614 (USD 4,879), and employed caregivers' annual productivity loss was 81 days. EQ-5D-Y utility was 0.880 ± 0.13 and VAS score was 75.38 ± 20.67, with 52.6% patients reporting having problems in "pain/discomfort" and 42.9% in "anxiety/depression." PedsQL GCS total score was 68.47 ± 19.42. ZBI score demonstrated that 39.5% of caregivers had moderate-to-severe or severe burden. For adult patients, average direct cost in 2021 was CNY 24,531 (USD 3,560). Patients in employment reported an absenteeism of 8.5% and presenteeism of 21.6% according to the results of WPAI-GH. EQ-5D-5L utility was 0.843 ± 0.17 and VAS score was 72.32 ± 23.49, with more than half of patients reporting having problems in "pain/discomfort" and "anxiety/depression" dimensions. PedsQL NFM total score was 68.40 ± 15.57., Conclusion: Both pediatric and adult NF1 patients in China had a wide-ranging economic burden and low HRQL, especially in the psychological dimension. Caregivers for NF1 pediatric patients experienced considerable caregiver burden. More attention and support from policymakers and stakeholders are required to relieve NF1 patients' and caregivers' distress., Competing Interests: JZ and QL are current employees of the funders of this study: China Alliance for Rare Diseases (CHARD) and Beijing Society of Rare Disease Clinical Care and Accessibility (BSRDCCA). The funders are non-profit organizations. The remaining 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 Liang, Cao, Suo, Zhang, Yang, Wang, Wang, Wang, Bai, Li, Zheng and Jin.)

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: Self-care for adults with hypertension includes adherence to lifestyle behaviors and medication. For unpaid caregivers with hypertension, the burden of family caregiving may adversely impact self-care. We examined the association between caregiver strain and hypertension self-care among caregivers with hypertension., Methods and Results: We included participants of the REGARDS (Reasons for Geographic and Racial Differences in Stroke) study who identified as caregivers and had hypertension. Caregiver strain, assessed by self-report, was categorized as "none/some" or "high." Hypertension self-care was assessed individually across 5 domains (Dietary Approaches to Stop Hypertension [DASH] diet, physical activity, alcohol use, cigarette smoking, and medication adherence) and a composite self-care score summing performance across them. The association between caregiver strain and hypertension self-care was examined with multivariable linear regression. Among the 2128 caregivers with hypertension, 18.1% reported high caregiver strain. Caregivers with high strain versus those with none/some were less adherent to the DASH diet (50.8% versus 38.9%, P <0.002), physically inactive (44.4% versus 36.2%, P <0.009), current smokers (19.7% versus 13.9%, P <0.004), and had lower overall self-care scores (6.6 [SD 1.7] versus 7.0 [SD 1.7], P <0.001). In an age-adjusted model, high caregiver strain was associated with worse hypertension self-care (β=-0.37 [95% CI, -0.61 to -0.13]); this remained significant but was reduced in magnitude after adjustment for sociodemographics (β=-0.35 [-0.59 to -0.11]), comorbidities (β=-0.34 [-0.57 to -0.10]), caregiving intensity (β=-0.34 [-0.59 to 0.10]), and psychological factors (β=-0.26 [-0.51 to 0.00])., Conclusions: High caregiver strain was associated with worse hypertension self-care overall and across individual domains. Increased awareness of caregiver strain and its potential impact on hypertension self-care is warranted.

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).)

Caregiving is often associated with negative physical and mental health outcomes, and as the COVID-19 pandemic escalated, caregivers experienced more burden and provided more care with substantially less support. Digital resources may have been one way caregivers managed demands for care and needs for information. This mixed-methods study included surveys and semi-structured interviews with caregivers ( n = 11) to describe experiences and use of digital health resources during the COVID-19 pandemic. Caregivers most often provided significant physical care and experienced reduced or no social support during the pandemic. Caregivers reported the need for improving the quality of telehealth services and digital health resources. COVID-19 will not likely be the last pandemic faced by contemporary society. Measures should be taken to reduce the anticipated negative impacts on caregivers and those receiving care during future pandemics., 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.

Aim: To investigate whether resilience mediates the connection between caregiver burden and hope among caregivers of patients with inflammatory bowel disease (IBD)., Design: A cross-sectional study., Methods: Two hundred patients with IBD were conveniently sampled from two tertiary hospitals in Jiangsu Province, China. The main instruments involved the Zarit Burden Interview, the 10-item Connor-Davidson resilience scale, and the Herth Hope Index. We conducted descriptive analysis and Pearson correlations using SPSS 25.0. The PROCESS v3.3 macro analysed the mediating effect. We report the results in line with the STROBE checklist., Results: Caregiver burden was significantly negatively connected with hope and resilience, whereas resilience positively correlated with hope. The mediation role of resilience was significant in the relationship between caregiver burden and hope, with mediating effects accounting for 47.86% of the overall effect., Conclusions: Resilience partially mediates the association between caregiver burden and hope among patients with IBD. This finding highlights the protective role of resilience in undermining caregiver burden and strengthening hope., Implications for Practice: In clinical practice, healthcare providers should perform routine psychological assessments for caregivers of patients with IBD. Furthermore, resilience training should be incorporated into interventions to alleviate caregiver burden and enhance hope., Patient or Public Contribution: None., (© 2024 The Author(s). Nursing Open published by John Wiley & Sons Ltd.)

Objective: This study aimed to investigate the level of family caregivers' (FC) burden and the extent to which patient- and caregiver-related factors influence the caregiving burden among FCs of urologic cancer (UC) patients., Method: A cross-sectional survey was conducted on caregivers of UC patients who sought cancer care. The modified caregiver strain index (MCSI) was used to assess FC burden., Results: Just over half (54.3%) of FCs had moderate/high MCSI scores (score 9-26). By demographics, FCs who were unemployed (OR = 5.55, 95%CI 1.50-20.60) and perceived their current health condition as moderate/poor (OR = 6.05, 95%CI 1.95-18.78) reported higher odds of increased FC burden. Patient performance status played a pivotal role in exacerbating FC burden, whereby the odds of higher FC burden was 13 times higher in caregivers of UC patients having an Eastern Cooperative Oncology Group (ECOG) performance rating score of 3-4 (OR = 13.06, 95%CI 1.44-111.26) than those with a score of 0. Perceived lower levels of confidence in care provision were significantly associated with a higher level of strain (OR = 6.76, 985%CI 1.02-44.90)., Conclusion: Care recipient performance status was a strong patient-related factor associated with higher FC burden regardless of duration of caregiving and other caregiver-related factors after adjusting for caregiver demographics., 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.)

Providing care to a patient with cerebral palsy can have many negative impacts upon caregivers. This study was carried out to define caregiving burden in the caregivers of cerebral palsy patients and determine the relationships between religious coping, fatalism, and burden of care. This cross-sectional and correlational study included 132 caregivers. Data were obtained using the Religious Coping Scale, the Fatalism Scale, and the Caregiver Burden Scale. It was determined that 18.9% of the participants experienced a heavy care burden. The luck and pessimism dimensions of the Fatalism Scale were positively and weakly correlated with caregiving burden (p < 0.01), while there was no correlation between caregiving burden and positive or negative religious coping styles (p > 0.05). Perception of fatalism explained 10% of the total variance in caregiving burden (R = 0.329, R 2  = 0.109, F = 5.195, p = 0.002). It is recommended that caregivers be supported by religious experts to strengthen positive religious coping styles and advisable fatalism perceptions., (© 2023. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Background: The number of patients with dementia increases rapidly in aging populations. Dementia is an irreversible disease that causes a patient to be dependent on others' care and also causes family caregivers to experience difficulties in multiple domains., Purpose: In this study, a dementia caregiver's burden scale that addresses family caregivers' characteristics and caring environments was developed and validated., Methods: In-depth interviews with nine caregivers were conducted to identify the attributes of perceived burden and establish preliminary questions. Content validity was confirmed by seven experts using the item content validity index and scale content validity index/average. Construct validity, criterion-related validity, and reliability were verified using data from 205 primary caregivers of patients with dementia., Results: Exploratory factor analysis revealed that five factors, including physical health deterioration, responsibility and role of caregiver, emotional distress, medical expense concerns, and family conflict, and 24 items explained 68.6% of the total variance. The calculated Cronbach's α for the overall scale was .96., Conclusions: The scale developed in this study may be used to measure the burden perceived by family caregivers of patients with dementia in the physical, emotional, social, financial, and situational domains. Also, the scale may be used to guide the development of tailored interventions that take into consideration different family caregiver and caring situation-related characteristics., Competing Interests: The authors declare no conflicts of interest., (Copyright © 2024 The Authors. Published by Wolters Kluwer Health, Inc.)

Background and Objective: The aim of this study was to evaluate the caregiver burden, mindfulness, and quality of life (QoL) of caregivers of ALS patients and the patient's functional level., Methods: This study was conducted with 57 ALS patients and their primary caregivers. The data were collected using the Zarit Burden Interview, Mindful Attention Awareness Scale (MAAS), the Short Form-36 (SF-36), and the ALS Functional Rating Scale (ALS-FRS)., Results: The mean age of the caregivers was 49.7 ± 12 years; 66 % were female, and 73.7 % were spouses of the patients. Around 65 % of caregivers experienced a moderate to severe caregiver burden. A low and negative correlation was found between the caregiver burden and mindfulness of caregivers of ALS patients. As the mindfulness levels of the caregivers increased, the caregiver burden decreased, and the physical role difficulty score, one of the sub-dimensions of the QoL, increased. Also, caregivers' QoL decreased as caregiver burden increased (except physical function QoL, p < 0.05). Moreover, there was a positive correlation between the caregiver burden and ALSFRS-R scores (bulbar, motor, respiratory, and total) of the caregivers of ALS patients (p < 0.05)., Discussion: Improved technology for managing ALS disease has increased patient life expectancy. However, caregivers may experience a high burden as the patient's functional level declines. Increasing caregiver mindfulness can help reduce the burden and improve their QoL., 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 Ltd. All rights reserved.)

Traumatic spinal cord injury (tSCI) resulting in quadriplegia is a life-altering injury for patients and caregivers. We conducted a retrospective review of patients treated for tSCI and quadriplegia at a level 1 trauma center to assess quality of life (QOL), socioeconomic factors, and mortality. Patients and caregivers were surveyed. Of the 65 patients included, 33 contacts were made. Seventeen surveys were completed (12 caregivers and 5 patients). Six unreachable patients were confirmed alive via medical record. Mortality rate among these 39 accessible patients was 23% (n = 9). Medicaid and uninsured patients experienced longer hospital length of stay ( P < .0001) and discharged to home or nursing facilities ( P < .0001) more often than those with private insurance or Medicare. Patients reported overall "good" QOL (80%) while caregivers reported overall decreased QOL markers. Our results reflect the resilience among this patient population, but also highlight the impact of this life-altering injury on the caregiver., 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.

Subjective caregiver burden is highly prevalent in family caregivers. Despite several studies investigating the relationship between subjective caregiver burden and coping strategies, results remain inconsistent. The aim of our study was to systematically review current literature on the relationship between subjective caregiver burden and coping in family carers of dependent adults and older people. A secondary objective was to analyse possible sources of heterogeneity in the estimated effect. The study design was a systematic review with meta-analysis following Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement (PRISMA) guidelines. We searched several international databases (CINAHL, LILACS, PsycINFO and PubMed) up to February 2024. We performed several subgroup analyses to examine whether study design, methodological quality or care recipient dependency influenced results. Of the 1064 records identified in our search, a total of 80 studies met inclusion criteria. We found a significant association between greater use of dysfunctional coping and higher levels of subjective caregiver burden ( r ‾ $\overline{r}$  = 0.400; 95% CI = 0.315, 0.478); higher use of second-order active coping was significantly associated with lower caregiver burden ( r ‾ $\overline{r}$  = -0.213; 95% CI = -0.316, -0.105). Problem-focused coping showed no statistically significant association with levels of subjective burden; emotion-focused coping was associated with caregiver burden only after controlling for confounding variables ( r ‾ $\overline{r}$  = -0.258; 95% CI = -0.441, -0.055); several individual strategies of this dimension such as acceptance ( r ‾ $\overline{r}$  = -0.135; 95% CI = -0.238, -0.028), positive reappraisal ( r ‾ $\overline{r}$  = -0.178; 95% CI = -0.255, -0.099) and religious coping ( r ‾ $\overline{r}$  = -0.083; 95% CI = -0.162, -0.002), were associated with lower burden. We found that several dimensions of coping strategies are significantly associated with levels of subjective caregiver burden experienced by carers. These results can inform future research evaluating the effectiveness of interventions aimed at improving carers' mental health., (© 2024 The Authors. Stress and Health published by John Wiley & Sons Ltd.)

This study aimed to analyze the relationship between the caregiver burden, death obsessions, and somatic symptoms; and whether the death obsessions are playing a mediating role in the relationship between the caregiver burden and somatic symptoms. The study was done on the informal dementia caregivers residing in India. Three questionnaires in a google form were circulated. The correlational and mediation analysis revealed that there was a significant and positive correlation between the caregiver burden, death obsessions, and somatic symptoms. Further, the death obsessions significantly mediated the relationship between caregiver burden and somatic symptoms., 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.

Introduction: As hemodialysis is a long-term treatment method requiring significant self-management skills, it affects both the patient and the caregiver in many ways. It is inevitable that changes in the burden perceived by the caregiver over time will not affect the patient's health care outcomes. The aim of this study was to develop an up-to-date scale by examining the psychometric properties of items created specifically for the care burden perceived by individuals who provide care for patients receiving hemodialysis treatment., Methods: This study is a methodological study with the use of the COSMIN Checklist. The sample of the study included 404 individuals who were the primary caregivers of patients receiving hemodialysis treatment. Data were collected using descriptive characteristics form and the draft form of the Primary Caregiver Burden Scale Individuals Receiving Hemodialysis Treatment. Exploratory and confirmatory factor analysis and predictive validity were used to evaluate validity. The Cronbach's alpha reliability coefficient, item analysis, and test-retest method were employed to evaluate reliability., Results: According to exploratory factor analysis, a scale structure with four subdimensions was determined, and goodness of fit was achieved using confirmatory factor analysis. The Cronbach's alpha coefficient of the final form of the scale consisting of 34 items was found to be 0.95 for the total scale, 0.93 for the self-management support subscale, 0.91 for the psychological support subscale, 0.91 for the caregiver symptom subscale, and 0.93 for the caregiver individual coping subscale., Conclusion: The Primary Caregiver Burden Scale Individuals Receiving Hemodialysis Treatment, which was found to meet the validity and reliability criteria, has a four-point Likert-type scoring structure, 34 items, and four subdimensions. It is thought that the scale can make significant contributions to the international literature if its validity and reliability are established with nursing practices and research., (© 2024 International Society for Apheresis and Japanese Society for Apheresis.)

This weekly diary study investigated associations of weekly dyadic coping strategies with caregivers' willingness to care and burden. Multilevel modelling was applied to assess between- and within-person associations for 24 consecutive weeks in 955 caregivers. Greater willingness to care was reported in weeks when caregivers used more collaborative ( b = 0.26, p < 0.001) and supportive ( b = 0.30, p < 0.001) strategies, whereas uninvolved coping was associated with lower willingness to care ( b = -0.44, p < 0.001). Using collaborative coping strategies was associated with lower weekly burden ( b = -0.13, p < 0.001). A greater burden was reported in weeks when caregivers used more uninvolved ( b = 0.19, p < 0.001) and controlling ( b = 0.13, p < 0.001) coping strategies. A full understanding of whether caregivers' willingness to care and burden may be improved owing to weekly dyadic coping is essential for developing timely support for caregivers., Competing Interests: Declaration of conflicting interestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objectives: (1) To describe existing tools to assess the burden of informal caregivers of people with cancer, (2) to describe how these tools have been validated and (3) to describe the areas of interest of existing assessment tool entries., Background: The caregiver burden of informal caregivers of people with cancer greatly affects their lives. There is a wide variety of relevant assessment tools available, but there are no studies to help researchers to select tools., Methods: A search was conducted using the keywords 'cancer', 'caregiver', 'burden' and 'scale' in Medline (PubMed), CINAHL and EMBASE to include articles that developed or applied tools to assess the burden on informal caregivers of cancer patients. Once eligible tools were identified, we searched their 'primary reference' studies. If the original scale was assessed in a population other than informal caregivers of cancer patients, we again searched for psychometric measures in the population of caregivers of cancer patients., Results: This study retrieved 938 articles on developing or applying the informal caregiver burden instrument for cancer patients, including 42 scales. Internal consistency of the original scales ranged from 0.53 to 0.96. Nineteen scales initially developed to assess caregiver burden for patients with dementia, stroke and other disorders were later used for caregivers of cancer patients, eight of which have not yet been validated. Reclassifying all scale domains of concern revealed that scale assessments focused more on caregivers' physical health, emotional state and caregiving tasks., Conclusion: This review identifies many scales for assessing informal caregiver burden in cancer patients and gives scales recommended. However, a portion still needs to be validated. The development of a new scale proposes to be based on a theoretical framework and to consider dimensions for assessing support resources., Impact: What problem did the study address?: This paper collates assessment tools on the burden of informal carers of people with cancer. It also provides information on the applicable population, reliability and validity. What were the main findings?: 41 scales could be considered for use, eight of which have not been validated. The scales focus more on assessing caregivers' physical health, emotional state and caregiving tasks, and less on the dimension of support resources. Where and on whom will the research have an impact?: There are implications for informal carers of cancer patients in hospitals or in the community, as well as for relevant researchers., Reporting Method: Retrieved with reference to systematic evaluation., Patient or Public Contribution: No patient or public contribution., (© 2024 John Wiley & Sons Ltd.)

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).)

Introduction: Cancer-related fatigue is common in patients with advanced lung cancer. It not only interferes with patients' health-related quality of life, but also increases the caregiving burden of their caregivers. Acceptance and commitment therapy is emerging as a novel way to advocate accepting negative experiences and taking effective actions based on their own values to help patients commit meaningful actions in the course of cancer diseases. This trial aims to test the feasibility, acceptability and preliminary effects of acceptance and commitment therapy for fatigue interference in patients with advanced lung cancer and the caregiver burden., Method and Analysis: A two-arm, assessor-blind pilot randomised controlled trial will be conducted. A total of 40 advanced lung cancer patient-caregiver dyads, who live in rural areas, will be recruited from a university-affiliated hospital in central China. The participants will be randomised to receive an online six-session acceptance and commitment therapy (i.e. involving metaphors, experiential exercises and mindfulness exercises facilitated by virtual reality technology) plus health education (intervention group, n=20) or health education (control group, n=20). Outcomes will be measured at baseline and 1 week postintervention. The primary outcomes are study feasibility (i.e. eligibility rate, recruitment rate, attrition rate and adherence rate), fatigue interference and caregiver burden. The secondary outcomes are health-related quality of life, meaning in life, psychological flexibility and mindful attention. Semistructured interviews will be conducted to explore the feasibility and experiences of the intervention in a subsample of 10 participants from the intervention group., Ethics and Dissemination: This study has been approved by the Joint Chinese University of Hong Kong-New Territories East Cluster Clinical Research Ethics Committee (CREC Ref. No. 2023.030) and the Medical Ethics Committee of Xiangya Hospital Central South University (No. 202305336). The findings will be disseminated in peer-reviewed journals and through local or international conference presentations., Trial Registration Number: NCT05885984., 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.)

This study was conducted to determine the effect of Mindfulness-Based Compassionate Living (MBCL) training given to the informal caregivers of palliative patients on burnout and caregiving burden. A single-blind, randomized, controlled, experimental study was conducted with 54 caregivers of patients admitted to a hospital palliative care unit. The participants were randomly allocated to the experimental group (n = 26) and control group (n = 28). The experimental group received MBCL training twice a week for 4 weeks. Data were collected before and after the intervention using the Maslach Burnout Inventory, Caregiver Burden Scale and Self-Compassion Scale-Short Form. The data were analyzed using kurtosis and skewness coefficients, number, percentage, mean, standard deviation, chi-square test, independent samples t test, Wilcoxon signed ranks test and Mann-Whitney U test in SPSS version 22.0. The informal caregivers in the experimental group demonstrated a significant decrease in emotional exhaustion and depersonalization scores and an increase in personal accomplishment and self-compassion scores in posttest assessments after the MBCL intervention (P < 0.05). All of these parameters differed significantly between the experimental and control groups after the intervention (P < 0.05). MBCL training seems to be effective in reducing emotional exhaustion and depersonalization and increasing personal accomplishment and self-compassion among informal caregivers of palliative inpatients. The results of this study can be generalized to the caretakers of patients receiving palliative care in university hospitals., (© The Author(s) 2024. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Introduction: The objective of this study was to comprehensively understand the burden experienced by caregivers (CGs) providing home-based, end-of-life care to patients with cancer. We examined the relationship between objective and subjective burden including whether and how burden changes over time., Methods: A case series of terminal cancer patient-caregiver dyads (n = 223) were recruited from oncology clinics and followed for 12 months or until patient death. Data were collected every other week and in-person from CGs in their homes using quantitative surveys, diaries, and monthly structured observations., Results: Bivariate correlations revealed a significant association between subjective burden and activities of daily living (ADLs), instrumental activities of daily living (IADL), high-intensity tasks, and time spent on ADLs; these correlations varied over time. Models examining the slope of subjective burden revealed little systematic change; spouse caregiver and patient functional limitations were positively, and Black caregiver was negatively associated with subjective burden. Generally, the slopes for measures of objective burden were significant and positive. Models showed subjective burden was positively associated with most measures of objective burden both within caregiver (concurrent measures were positively associated) and between CGs (those with higher subjective also had higher objective)., Conclusions: Cancer caregiving is dynamic; CGs must adjust to the progression of the patient's disease. We found an association between subjective and objective burden both within and between CGs. Black CGs were more likely to report lower subjective burden compared to their White counterparts. More detailed investigation of the sociocultural components that affect caregiver experience of burden is needed to better understand how and where to best intervene with targeted supportive care services., (© The Author(s) 2024. Published by Oxford University Press.)

The objective of this systematic review was the evaluation of the burden of family caregivers of patients on hemodialysis and its correlation with caregivers' quality of life. Articles from PubMed and Scopus published between 2012 to 2022 were retrieved from using the key words burden, family caregivers, quality of life, and hemodialysis patients. Articles reviewed included quantitative data indicating the family caregiver burden ranged from moderate to severe. The correlation between burden and quality of life was negative. Nephrology nurses in hemodialysis units should contribute to the design and implementation of educational programs and support strategies for family caregivers of patients on hemodialysis to support caregivers, reduce their burden, and improve their quality of life., Competing Interests: The authors reported no actual or potential conflict of interest in relation to this nursing continuing professional development (NCPD) activity., (Copyright© by the American Nephrology Nurses Association.)

Aim: This study's aim is to determine the relationship between care burden, perceived social support, coping attitudes and life satisfaction of mothers with children with cerebral palsy (CP)., Methods: This descriptive study was conducted in Turkey between March and June 2022 to determine the relationship between caregiving burden, perceived social support, coping attitudes and life satisfaction of 122 mothers with CP children. Path analysis was used to evaluate the data., Results: Correlation analysis showed a positive relationship between mothers' social support perceptions and life satisfaction and coping attitudes, a positive relationship between their life satisfaction and coping attitudes (p < .001). The path analysis showed that the social support perceived by the mothers significantly affected their coping attitudes (β = .257; p < .001) and life satisfaction (β = .081; p < .001). Mothers' care burden (β = .169; p < .001) and coping attitudes (β = .071; p < .05) also had a significant effect on their life satisfaction., Conclusions: It is an important finding of this study that mothers' perceptions of social support and coping attitudes have a positive effect on their life satisfaction. Long-term care can cause physical and psychological problems for mothers. Mothers' strong coping strategies and high levels of social support may reduce the occurrence of these problems. Drawing attention to this issue in mothers and revealing the effects of these variables is important in terms of indirectly supporting child outcomes., (© 2024 John Wiley & Sons Ltd.)

Importance: Long-term evidence for the effectiveness and cost-effectiveness of collaborative dementia care management (CDCM) is lacking., Objective: To evaluate whether 6 months of CDCM is associated with improved patient clinical outcomes and caregiver burden and is cost-effective compared with usual care over 36 months., Design, Setting, and Participants: This was a prespecified secondary analysis of a general practitioner (GP)-based, cluster randomized, 2-arm clinical trial conducted in Germany from January 1, 2012, to December 31, 2014, with follow-up until March 31, 2018. Participants were aged 70 years or older, lived at home, and screened positive for dementia. Data were analyzed from March 2011 to March 2018., Intervention: The intervention group received CDCM, comprising a comprehensive needs assessment and individualized interventions by nurses specifically qualified for dementia care collaborating with GPs and health care stakeholders over 6 months. The control group received usual care., Main Outcomes and Measures: Main outcomes were neuropsychiatric symptoms (Neuropsychiatric Inventory [NPI]), caregiver burden (Berlin Inventory of Caregivers' Burden in Dementia [BIZA-D]), health-related quality of life (HRQOL, measured by the Quality of Life in Alzheimer Disease scale and 12-Item Short-Form Health Survey [SF-12]), antidementia drug treatment, potentially inappropriate medication, and cost-effectiveness (incremental cost per quality-adjusted life year [QALY]) over 36 months. Outcomes between groups were compared using multivariate regression models adjusted for baseline scores., Results: A total of 308 patients, of whom 221 (71.8%) received CDCM (mean [SD] age, 80.1 [5.3] years; 142 [64.3%] women) and 87 (28.2%) received usual care (mean [SD] age, 79.2 [4.5] years; 50 [57.5%] women), were included in the clinical effectiveness analyses, and 428 (303 [70.8%] CDCM, 125 [29.2%] usual care) were included in the cost-effectiveness analysis (which included 120 patients who had died). Participants receiving CDCM showed significantly fewer behavioral and psychological symptoms (adjusted mean difference [AMD] in NPI score, -10.26 [95% CI, -16.95 to -3.58]; P = .003; Cohen d, -0.78 [95% CI, -1.09 to -0.46]), better mental health (AMD in SF-12 Mental Component Summary score, 2.26 [95% CI, 0.31-4.21]; P = .02; Cohen d, 0.26 [95% CI, -0.11 to 0.51]), and lower caregiver burden (AMD in BIZA-D score, -0.59 [95% CI, -0.81 to -0.37]; P < .001; Cohen d, -0.71 [95% CI, -1.03 to -0.40]). There was no difference between the CDCM group and usual care group in use of antidementia drugs (adjusted odds ratio, 1.91 [95% CI, 0.96-3.77]; P = .07; Cramér V, 0.12) after 36 months. There was no association with overall HRQOL, physical health, or use of potentially inappropriate medication. The CDCM group gained QALYs (0.137 [95% CI, 0.000 to 0.274]; P = .049; Cohen d, 0.20 [95% CI, -0.09 to 0.40]) but had no significant increase in costs (437€ [-5438€ to 6313€] [US $476 (95% CI, -$5927 to $6881)]; P = .87; Cohen d, 0.07 [95% CI, -0.14 to 0.28]), resulting in a cost-effectiveness ratio of 3186€ (US $3472) per QALY. Cost-effectiveness was significantly better for patients living alone (CDCM dominated, with lower costs and more QALYs gained) than for those living with a caregiver (47 538€ [US $51 816] per QALY)., Conclusions and Relevance: In this secondary analysis of a cluster randomized clinical trial, CDCM was associated with improved patient, caregiver, and health system-relevant outcomes over 36 months beyond the intervention period. Therefore, it should become a health policy priority to initiate translation of CDCM into routine care., Trial Registration: ClinicalTrials.gov Identifier: NCT01401582.

Aim: To examine the effects of spousal support and parent-nurse partnership on caregiver burden of parents of children with chronic disease., Background: With the trend of increasing the global number of children with chronic diseases, the parental caregiver burden has become increasingly prevalent., Design: Cross-sectional study., Methods: The study participants included 115 parents of children diagnosed with chronic disease at a general hospital in South Korea. The study duration was 4 June 2021-30 April 2022. Self-reported measures included the parent-nurse partnership scale, the Korean version of the Parenting Alliance Inventory and the family caregiver burden scale. T-tests, ANOVA, Pearson's correlation coefficients and hierarchical linear multiple regression were conducted using IBM SPSS version 26.0. This study followed STROBE guideline., Results: Parental caregiver burden was significantly negatively associated with spousal support and parent-nurse partnership. Factors significantly influencing caregiver burden were parental alcohol consumption; child's inherited metabolic disease, cardiovascular disease, disease relating to haematological tumours or kidney disease diagnosis; child's health perceived as poor by parents; child's dependency perceived as high by parents; hospitalization recency; and low spousal support. These factors accounted for 65% of caregiver burden., Conclusion: Parental caregiver burden was related to spousal support and parent-nurse partnership, but the primary factor affecting caregiver burden was spousal support., Relevance to Clinical Practice: The results highlighted the role of healthcare professionals in educating parents of children with chronic diseases to facilitate spousal support and have implications for nursing and community-based interventions to reduce parental caregiver burden. Furthermore, they underlined that policymakers and other stakeholders should pay attention to the parental caregiver burden through government-based, family-centered strategies., Patient or Public Contribution: Parents of children with chronic disease were recruited to perform the self-administered survey in the phase of data collection., (© 2024 John Wiley & Sons Ltd.)

Bacground: This research was conducted to examine the caregiving burden and stress situations of mothers with children with special needs., Methods: The research, which is descriptive and correlation-seeking, was conducted between September 2022 and September 2023 in special education and rehabilitation centers in a city in eastern Turkey. The population of the research consists of the mothers of 2072 children who received education in the specified Special Education and Rehabilitation Centers between the specified dates. The sample size was determined to be 324 individuals based on the known sampling method. "The Personal Information Form, the Zarit Caregiving Burden Scale, and the Perceived Stress Scale were used to collect the data for this study. The data was analyzed using the SPSS package software. For the interpretation of the data, percentages, means, standard deviations, one-way variance analysis, independent groups t-test, Pearson correlation, and simple linear regression were used., Findings: Among the mothers, 44% were aged 30-39, 87.0% had a child with a disability, and 51.9% had a child with an intellectual disability. The mean total scores of the mothers were 26.71 ± 8.80 for the Zarit Caregiving Burden Scale and 27.00 ± 11.35 for the Perceived Stress Scale. There is a difference between the mothers' age, education level, income level and the type of disability of their child and the Zarit Caregiving Burden scale score average; It was determined that there was a significant difference between the place of residence and the number of disabled children they had and the average score of the Perceived Stress Scale. A positive correlation was found between Zarit Caregiving Burden Scale scores and Perceived Stress Scale scores of the mothers (p < 0.05)., Application to Practice: The study revealed that mothers with children with special needs experienced higher levels of stress as their care burden increased. Providing economic assistance and informing and training mothers about the care of children with special needs were recommended to reduce the care burden of mothers with children with special needs., 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.)