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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).)

Background: This study aims to validate a hypothesized model of the relationships between optimism, resilience, coping, parenting stress, perceived social support, and anxiety, as well as their influencing factors and consequences among caregivers of children diagnosed with cleft lip and/or palate (CL/P)., Methods: A hypothesized model was proposed based on diathesis-stress theoretical model and existing literature. A convenience sample of two CL/P treatment centers in China was collected between April 2019 and July 2020. Various well-validated instruments were used to collect 248 valid data points. Descriptive statistics and correlations were computed to assess model fitness and path analysis was performed to investigate direct and indirect effects., Results: The results revealed that the average level of anxiety among caregivers of children suffering from CL/P was 3.00 (0.00,6.00). The fitness of the modified path model was evaluated using various measures, including χ2/df = 1.806, GFI = 0.989, RFI = 0.916, IFI = 0.990, CFI = 0.989, TLI = 0.960, RMSEA = 0.0570. Parenting stress had the greatest direct associated with anxiety, followed by perceived social support. Moreover, indirect relations to anxiety were observed for optimism, resilience, and coping, which were mediated through perceived social support and parenting stress., Conclusion: In summary, this work suggests that both parenting stress and perceived social support in caregivers of children suffering from CL/P are associated with anxiety. Therefore, developing effective intervention approaches targeting key factors might potentially instrumental to alleviate anxiety., Competing Interests: Declarations Ethics approval and consent to participate The Ethical Committee of China Medical University granted ethical approval to this study (No.2018–27). The completion of this study was voluntary and implied consent was communicated to all participants. They were also well informed about their right to withdraw from the study. Participants’ anonymity was maintained throughout the study. Participants provided their informed consent prior to responding to the survey questions. All methods were carried out in accordance with relevant guidelines and regulations. Consent for publication Not applicable. Competing interests The authors declare no competing interests., (© 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).)

In light of China's progressively aging population, family care with the "warmth of affection" has always been an irreplaceable form of care that meets the wishes of the majority of disabled elderly to enjoy their twilight years comfortably. Data from a follow-up survey on the influencing factors of the Chinese Longitudinal Healthy Longevity Survey from 2018 and the Anderson Model was used as a theoretical framework to analyze the influencing factors using a binary logistic regression model. Children were the main providers of care services among disabled elderly in family care. Family care for disabled elderly was influenced by the combined effects of age (P < 0.01), gender (P < 0.05), marital status (P < 0.01), number of children (P < 0.01), housing ownership (P < 0.05), primary carer preference (P < 0.05), and self-assessed health (P < 0.01) were jointly affected. As a result, it's critical to set up a strong social support network that is focused on family caregiving and includes tailored interventions based on the requirements of disabled elderly and family caregivers., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Zhang, Wang. 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: Family hardiness is a key variable contributing to positive family functioning, which has significant effects on the quality of life and the mental health of patientsand caregivers. The factors that contribute to family hardiness support both the psychological and physical well-being of caregivers is unknown. More specifically, the relationship of family hardiness with attachment and caregiver preparedness has not been explored., Aim: The current study aimed to investigate the family hardiness in caregivers of breast cancer patients and explore the relationship with attachment and caregiver preparedness and identify the associated factors., Methods: This cross-sectional correlational study was conducted from March to July, 2022. 140 caregivers of breast cancer patients were recruited in two IIIA-grade hospitals in Hunan Province using convenience sampling. Data were collected using a personal characteristics questionnaire, The Family Hardiness Index (FHI), Caregiver Preparedness Scale (CPS), and the Experiences in Close Relationships Inventory-Revised Edition (ECR-R). Chi-square, Pearson's correlation coefficient, generalized additive model and multiple logistic regression analyses were performed., Results: A total of 140 caregivers participated in the study. The mean age of participants was (42.29 ± 14.54) years and most of them were male (57.1%). The mean FHI score of caregivers was 58.11 ± 5.67. Multiple linear regression analysis indicated that family hardiness is affected by ECR-R, CPS, education level, and knowledge of breast cancer. The score of CPS was positively associated with family hardiness ( β  = 0.265, p  < 0.001), whereas ECR-R negatively predicted family hardiness ( β  = -0.078, p  < 0.001)., Conclusion: Family hardiness plays a critical role in helping caregivers manage the stresses associated with providing care to breast cancer patients. Enhancing caregiver preparedness and education, as well as addressing attachment-related issues, can significantly improve family hardiness. In light of our findings, we suggest that closer relationships within families, adding preparedness and knowledge of disease should be encouraged during the care of breast cancer patients., 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 Sun, Xu and Sheng.)

Background: Multicomponent interventions with carers of people with dementia demonstrate positive effects on the health and quality of life for carers and care recipients. The World Health Organization's iSupport for Dementia is an evidence-based online psychoeducation programme for carers. However, the programme was mainly implemented as a self-learning tool which might have limited its positive effects on carers and care recipients. Evidence for online multicomponent interventions with carers that incorporates the iSupport programme remains unknown., Objectives: This study aimed to partner with health and social care organisations to evaluate the effects of a facilitator-enabled online multicomponent Chinese iSupport programme, which included psychoeducation using the iSupport programme, facilitator-enabled carer support groups and access to care services., Design: A multicentre randomised controlled trial., Settings and Participants: Participants were family carers in Australia and greater China. We recruited participants to the study from 1st November 2021 to 30th June 2022., Methods: The intervention group received the Chinese iSupport programme delivered online. The intervention lasted for 6 months. Our primary outcome was carers' quality of life. Our secondary outcomes were carers' self-efficacy, social support, distress reactions to changed behaviours, care recipients' frequency of changed behaviours, quality of life, unplanned hospital admissions, emergency department presentations and permanent admissions to nursing homes. The outcomes were measured at baseline (T0), 6 months (T1) and 9 months (T2). We applied a multivariate mixed effect linear regression model to capture the group effect, time effect and their interaction., Results: In total, 266 eligible family carers agreed to participate and were randomly assigned to an intervention group (n = 131) or a usual care group (n = 135). Most carers were women with a mean age of 53 years. The intervention group showed a statistically significant higher score of mental-health-related quality of life (mean difference = 4.1, 95 % CI: 1.5, 6.8, p = 0.002), self-efficacy in controlling upsetting thoughts (mean difference = 7.1, 95 % CI: 2.2, 12.0, p = 0.005) and lower score of distress reactions to changed behaviours (mean difference = -0.1, 95 % CI: -0.3, -0.03, p = 0.012) than the usual care group at T1., Conclusion: The facilitator-enabled online multicomponent Chinese iSupport programme demonstrated positive effects for carers on mental health-related quality of life, controlling upsetting thoughts and distress reactions to changed behaviours of people with dementia., Trial Registration: This study is registered in the Australia New Zealand Clinical Trials Registry on 12th March 2021 (ACTRN12621000276853)., Tweetable Abstract: The facilitator-enabled online multicomponent Chinese iSupport programme improved family carers' mental health-related quality of life, control of upsetting thoughts and distress reactions to changed behaviours of people with dementia., Competing Interests: Declaration of Competing Interest No conflict of interest has been declared by the authors., (Copyright © 2024 The Author(s). Published by Elsevier Ltd.. All rights reserved.)

Purpose: The co-occurrence of health impairments in patients and their informal caregivers may be particularly common in intimate care settings in China. Patients with Chronic Refractory Wounds (CRWs) and their informal caregivers constitute a dyad and exhibit dyadic effects during the caring process. Unfortunately, no study has yet explored the dyadic effects of stigma on the QoL of patients with CRWs and their caregivers., Methods: We used a convenience sampling method and recruited CRWs patient-caregiver dyads (N = 207) in China between April 2022 and October 2023., Results: We found that: (i) dyadic members experience varying degrees of stigma; (ii) the actor-partner effect of CRWs patients' stigma on their own and their informal caregivers' QoL was significant (Path A 1 : β = - 1.27, Path A 2 : β = - 0.37, Path P 1 : β = - 0.08, Path P 2 : β = - 0.18); (iii) informal caregivers' stigma adversely affects both their own and their patients' psychological QoL((Path A 4 : β = - 0.65, Path P 4 : β = - 0.52)). Informal caregivers' stigma can negatively impact patients' physical QoL (Path P 3 : β = - 0.17), whereas it does not significantly affect their own physical QoL., Conclusion: There is a notable actor-partner effect of the CRWs patients' stigma on their own and their informal caregivers' QoL. CRWs patients' stigma should become a priority for the government to improve CRWs patients' and informal caregivers' QoL. Besides, health professionals should be addressing several assessments and interventions to decrease informal caregivers' affiliate stigma symptoms and improve CRWs patients' and informal caregivers' QoL., (© 2024. The Author(s), under exclusive licence to Springer Nature Switzerland AG.)

Objective: Gender could impact the psychosocial outcomes and coping strategies of cancer patients and their spousal caregivers (SCs). This study aims to develop a gender-concerned program for colorectal cancer (CRC) couple-based mutual communication intervention (MCI) and to assess its effectiveness on the intra-couple relationship and the individual functions of the partners., Design: A randomized clinical trial with two study groups was utilized., Methods: A total of 144 CRC patients and their SCs were randomly assigned to either MCI or usual care (UC) groups, and all of them were required to complete the measurements at baseline and post-intervention. The primary outcome was for mutual communication, and the secondary outcomes included dyadic coping, relationship satisfaction, anxiety, depression, benefit finding and quality of life. The data were analysed by multi-level modelling., Results: The MCI program was feasible and acceptable for Chinese CRC couples and was effective for the improvement of the intra-couple relationship and the individual functions of each partner. CRC patients showed more improvement in mutual communication and dyadic coping than their SCs in the MCI group. Also, this intervention effectiveness was found to be independent of gender., Conclusions: The MCI program is beneficial for Chinese CRC couple's adaptation outcomes. This suggests that clinical medical staff should consider the gender tendency during the implementation of interventions. More researches are needed to extend the application of the MCI program to different participants (e.g. patients with the diagnosis of other types of cancer and their SCs)., (© 2024 British Psychological Society.)

Aims: The primary aim of this study was to characterize the health-related quality of life (HRQoL) and identify the associated factors among children aged 2 to 18 in China diagnosed with idiopathic nephrotic syndrome (INS). Additionally, the study aimed to evaluate the HRQoL and caregiving burden of their caregivers and investigate the correlation between the HRQoL of the children and that of their caregivers., Methods: This study recruited 181 children diagnosed with INS from Children's Hospital, Zhejiang University School of Medicine in China. The proxy-reported PedsQL Generic Core Module (PedsQL™ 4.0 GCM) was used to measure the HRQoL of children, and the EuroQol five-dimensional questionnaire, five-level version (EQ-5D-5L) was applied to measure caregivers' HRQoL. Differences in scale scores and total scores of PedsQL™ 4.0 GCM were assessed using t-tests and one-way ANOVA. Multivariate linear regression analysis was used to identify the factors associated with children's HRQoL. Pearson correlation analysis evaluated the correlation between children's HRQoL and caregiver's HRQoL., Results: HRQoL of Children with INS declines with increasing age, and children aged 5-18 had lower scores in physical functioning, emotional functioning, school functioning, psychosocial health summary score, and total PedsQL™ 4.0 GCM score compared to healthy children. Various factors, including the mother filling out the questionnaire, the father being unemployed, and the use of other medications except for steroids, were associated with worse HRQoL of children (p values < 0.05). Additionally, a correlation exists between children's HRQoL and their caregivers' HRQoL., Conclusion: This study evaluated the HRQoL of children aged 2-18 years diagnosed with INS in China, along with the HRQoL of their caregivers. Multiple factors potentially influence the HRQoL of children. A significant correlation was observed between the HRQoL of children and their caregivers, who frequently experienced varying levels of caregiving burden. Therefore, it is recommended that healthcare professionals prioritize optimizing HRQoL for children with INS and their caregivers., (© 2024. The Author(s).)

Background: Effective medication management is crucial for ensuring timely pain and symptom control at the end of life. Dying in pain is a major concern for patients, yet some find less effective pain control at home. Family caregivers (FCGs) play a vital role in managing pain and symptom control for dying patients. However, the experience of administering medications at home for terminal-stage patients has not been widely recognized or understood. Our study aimed to explore the experiences of FCGs in administering medications to adult dying patients., Methods: We conducted a directed content analysis of data from 73 semi-structured interviews with FCGs across 19 Chinese provinces from 2021 to 2023. FCGs were recruited through the Voluntary Cooperative Network Research. We asked, "Could you recall the end-of-life care process for the patients?" We aligned the themes with the five issues identified by Wilson et al. (2018): administration, organizational skills, empowerment, relationships, and support., Results: FCGs in China exhibit concerns about over-engagement and empowerment in medication administration, concealing medication information from the patient, and medication accessibility. FCGs faced significant challenges in accurately identifying and addressing pain and symptoms, determining appropriate dosages, accessing effective medications, and managing the emotional stress associated with potential medication errors. Financial burden, medication regulatory restrictions, geographical inequality, and travel restrictions during COVID impeded patients and FCGs from accessing medication. A culturally specific finding is the use of alternative medicine at the end of life., Conclusion: Our findings build upon Wilson et al.'s framework and extend their insights on empowerment, highlighting the need for policies to support home-based palliative care professionals in training FCGs for effective medication administration., (© 2024. The Author(s).)

Objective: To explore the interaction between family members and nursing home staff during the adjustment period of newly admitted elderly individuals in a nursing home., Design: A qualitative descriptive study based on semistructured interviews; data were analysed using a thematic topic analysis approach., Setting: Interviews were conducted face-to-face., Participants: An interview was undertaken with 15 nursing home staff and 12 family members of recently admitted elderly individuals in three nursing facilities from November 2022 to January 2023 in a major Chinese urban centre., Results: This study identified 5 main themes and 10 subthemes. The 5 themes identified are: Information transmission and sharing, pleasant interaction atmosphere, interaction dilemmas and challenges, inadequate organisational management and the necessity and anticipation of interaction., Conclusion: During the process of older persons transitioning to institutional care, we discovered issues and unresolved requirements in the interactions between family members and nursing home staff. In summary, there is a need to enhance the development of an interactive environment that supports the institutionalisation of older persons. The findings derived from this study are valuable for developing interactive programmes., Trial Registration Number: ChiCTR2100045590, date: 19 April 2021., 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: Currently, most elderly chronic heart failure (CHF) patients go home for rehabilitation after certain treatment in hospitals. However, the results of their rehabilitation at home are not satisfactory. According to studies, dyadic treatments can increase the efficiency of home rehabilitation, enhance both partners' quality of life, lessen the caregiver's load of care, and alleviate the strain of medical resources. Thus, the aim of our research is to design a study protocol that included elderly CHF patients and their informal caregivers as an intervention unit and to explore the impact of the protocol on their health and physical outcomes., Methods: This is a prospective randomized controlled trial conducted in a triple-A hospital. In total, 80 elderly CHF patients and informal caregivers (80 dyads) will be recruited with informed consent. Based on the randomized numbers, they are divided into a control group (40 dyads) and an intervention group (40 dyads), subjects in the control group will receive usual care, and subjects in the intervention group will receive a home-based disease management program based on the Theory of Dyadic Illness Management on the basis of the control group. The duration of the intervention is 3 months, and the follow-up is 6 months. Data is collected at enrolment, 3 months after the intervention, and 3 months after the end of the intervention. The primary outcome is patients' quality of life and readmission. Secondary outcomes include patients' self-management behaviors, anxiety, and depression and caregivers' quality of life and care burden., Discussion: This study focuses on whether this home-based disease management program can improve the quality of life of elderly patients with CHF, reduce the readmission rate, enhance their self-management capacity, reduce negative emotions, and reduce the burden of informal caregivers. It can provide a new perspective on home management and cardiac rehabilitation of heart failure disease in the elderly, as well as alleviate problems such as the burden of healthcare resources., Trial Registration: Chinese Clinical Trials Registry ChiCRT2300068026. Registered on 3 February 2023, manuscript Version: 1.0,  https://www.chictr.org.cn/ ., (© 2024. The Author(s).)

Introduction: When young children experience recurrent respiratory infections, caregivers face the challenge of preventing new episodes whilst maintaining close rapport with their children. Pediatric massage, such as pediatric Tuina, entails soft massage of the skin, administered by trained providers. This non-pharmaceutical measure is used to prevent new respiratory infections in China. The aim of this study is to deepen our understanding of caregivers' experiences and perceptions of providing pediatric Tuina treatment to their children with recurrent respiratory tract infections., Methods: A qualitative study, based on semi-structured interviews, was conducted in accordance with the Consolidated Criteria for Reporting Qualitative Research checklist. Sixteen mothers from Southern China, whose children had received pediatric Tuina for recurrent respiratory tract infections, participated online. Analysis was conducted according to the principles of reflexive thematic analysis, using the NVivo qualitative research software., Results: The overarching theme was "Fostering embodied care with children". Caregivers assessed pediatric Tuina by hearing others' experiences of pediatric Tuina, as well as observing the manipulations on their child's body and their bodily reactions during pediatric Tuina sessions. Caregivers also closely observed children's bodily changes after pediatric Tuina sessions. Embodied attachment between children and adults was nurtured through the pediatric Tuina. Compared to other treatments or medical consultations, children were more relaxed and more involved in embodied care, which involved direct skin touching and verbal communication from the pediatric Tuina provider. Children also took the initiative to bring pediatric Tuina into their family life, by asking caregivers to perform it on them and mimicking the manipulations on the caregivers' hand., Conclusions: Pediatric Tuina served as a means of interaction between children and adults, fostering an embodied care on both a physical and emotional level. Beyond its potentially preventive effect on recurrent respiratory tract infections, pediatric Tuina could be a support for parents of children with recurrent or chronic disease at home., (© 2024. The Author(s).)

Background: As dementia progresses, patients exhibit various psychological and behavioral symptoms, imposing a significant burden on families and society, including behavioral and psychological symptoms of dementia. However, caregivers lack professional care knowledge and skills, making it difficult for them to effectively cope with the diverse challenges of caregiving. Therefore, it is necessary to provide caregivers with professional knowledge and skills guidance., Objective: This study aimed to analyze the impact of internet-based training on behavioral and psychological symptoms of dementia in patients, and explore how this training model affects the caregiving abilities and caregiving burden of the family caregivers of patients with dementia., Methods: Using a consecutive enrollment method, the Department of Geriatrics at Zhejiang Hospital (Zhejiang, China) recruited 72 informal caregivers of patients with dementia. These caregivers were randomly divided into an intervention group and a control group, with 36 participants in each group. The intervention group underwent caregiver skill training via a web-based platform, whereas the control group initially received face-to-face follow-up guidance and was subsequently offered web-based training after 6 months. To assess the effectiveness of the intervention program, we used the Neuropsychiatric Inventory Questionnaire (NPI-Q), the Chinese version of the Zarit Burden Interview (CZBI), and the Sense of Competence in Dementia Care Staff Scale (SCIDS) for evaluations conducted before the intervention, 3 months after the intervention, and 6 months after the intervention., Results: Between July 2019 and December 2020, a total of 66 patients successfully completed the intervention and follow-up. After 6 months of intervention, the NPI-Q score of the intervention group was 3.18 (SD 3.81), the CZBI score was 10.97 (SD 5.43), and the SCIDS score was 71.88 (SD 4.78). The NPI-Q score of the control group was 8.09 (SD 8.52), the CZBI score was 30.30 (SD 13.05), and the SCIDS score was 50.12 (SD 9.10). There were statistically significant differences in NPI-Q (P=.004), CZBI (P<.001), and SCIDS scores (P<.001) between the intervention group and the control group. Repeated measures analysis of variance showed that compared with before the intervention, there were statistically significant differences in CZBI (P<.001) and SCIDS (P<.001) scores 3 months after the intervention, while the difference in NPI-Q (P=.11) scores was not significant. The total scores of NPI-Q (P<.001), CZBI (P<.001), and SCIDS (P<.001) were significantly improved 6 months after the intervention. In addition, the results of the covariance analysis showed that after excluding the time effect, the web-based training intervention significantly reduced the NPI-Q score (-2.79, 95% CI -4.38 to -1.19; P<.001) of patients with dementia and the CZBI score (-13.52, 95% CI -15.87 to -11.16; P<.001) of caregivers, while increasing the SCIDS score (12.24, 95% CI 9.02-15.47; P<.001)., Conclusions: Internet-based training could significantly reduce the level of behavioral symptoms in older patients with dementia and alleviate the burden on caregivers, enhancing their caregiving abilities. Our results confirmed the effectiveness and feasibility of web-based training, which was of great significance in providing caregiving knowledge training for informal caregivers of persons with dementia., (© Yanhong Xie, Shanshan Shen, Caixia Liu, Hong Hong, Huilan Guan, Jingmei Zhang, Wanqi Yu. Originally published in JMIR Aging (https://aging.jmir.org).)

Importance: Childhood cancer survivorship programs and long-term follow-up (LTFU) practices are inadequate in most regions of China., Objective: To understand the clinician and caregiver perceptions of LTFU care and to identify barriers to adherence to LTFU care in mainland China., Design, Setting, and Participants: This survey study had a 2-phase sequential mixed-methods approach, consisting of a cross-sectional survey followed by semistructured interviews. Participants included oncology clinicians recruited through an educational seminar on LTFU and caregivers recruited through convenience sampling. Data were collected from November 2022 to September 2023., Main Outcomes and Measures: The clinician survey and interview focused on the standards and resources for LTFU care at their practicing institution and barriers to the coordination of LTFU care. For caregivers, the survey and interview focused on their awareness of and participation in LTFU care and their opinions on future LTFU care visits., Results: A total of 101 clinicians (28 [27.7%] male; 73 [72.3%] female; 46 [45.6%] aged >40 to 50 years) completed the survey (response rate: 90.2%) representing 32 institutions from 22 provinces. As for the caregivers' survey, 164 eligible participants (36 [22.0%] male; 128 [78.0%] female) were recruited (response rate: 20.2%). The majority of the caregivers had received a high school or greater education (96 [56.7%]) and were parents of CCSs diagnosed with leukemia (67 [40.9%]), lymphoma or solid tumors (47 [28.7%]), or conditions requiring hematopoietic stem cell transplantation (50 [30.5%]). Most clinicians (74 [73.3%]) reported providing late effects care, yet only 10 (13.5%) had a dedicated follow-up clinic for CCSs. Two-thirds (64 [63.4%]) reported that the LTFU plan for each survivor is solely determined by their clinical judgment. In structured interviews, all doctors admitted to deviating from published guidelines due to challenges in implementing screening recommendations in their settings. Barriers to providing LTFU services included patient-related factors (76 [75.2%]), survivor knowledge deficits (61 [60.4%]), and the absence of dedicated LTFU clinics (61 [60.4%]). Among caregivers responding to the survey, 60 (36.6%) had never heard of late effects. Overall, 22 of 26 caregivers (84.6%) who participated in the interviews were not aware of potential late effects, although 17 (68.0%) could articulate existing conditions and symptoms that their children were experiencing., Conclusions: In this mixed-methods study involving clinicians and caregivers, substantial disparities in the uniformity and accessibility of LTFU in China were observed, suggesting the imperative need for a standardized approach to LTFU care for survivors. This includes advocating for establishment of dedicated clinics, alongside an emphasis on enhanced education and training for both clinicians and caregivers.

This study aims to investigate whether generational differences in intergenerational caregiving patterns (caring for parents only, caring for grandchildren only, and caring for parents and grandchildren simultaneously) are associated with cognitive health disparities among the sandwich generation within four-generation families, drawing upon the theories of intergenerational solidarity and intergenerational stake. Moreover, this study seeks to identify mediators that help explain these disparities. A nationally representative sample of 8,065 respondents was drawn from the 2011 and 2018 waves of the China Health and Retirement Longitudinal Study. The findings reveal that the sandwich generation caring for grandchildren only, as well as those caring for grandchildren and parents simultaneously, exhibit better cognitive health. However, caregiving for parents only is not significantly related to their cognitive health. This study identifies the inability to reduce depressive symptoms as a mediator explaining the insignificant association between caregiving for parents only and the cognitive health of the sandwich generation. The findings underscore the importance of offering support to the sandwich generation within four-generation families to enhance their cognitive health. Moreover, it is imperative to distinguish between different intergenerational caregiving patterns based on generational differences among the sandwich generation, with a specific emphasis on allocating public resources aimed at promoting cognitive health for those engaged in caring for parents., 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.

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.

Objectives: Informal care provided by adult children is of great importance for older adults' well-being in China. This paper investigates and compares the functional transitions among older adults living in rural areas who receive care from daughters' and from sons' families., Methods: This study utilizes the "Well-being of Elderly Survey in Anhui Province" (WESAP) from 2001 to 2021. Our sample included 2,797 individuals aged 60 years or older. Functional status was based on the activities of daily living and the instrumental activities of daily living. We employed a random-effects ordered logit model to examine the functional transitions among the older adults., Results: Receiving care from daughters' families is significantly associated with a lower likelihood of functional decline compared to receiving care from sons' families in rural China. The advantage associated with daughter care becomes more pronounced among older individuals with a severe functional difficulty compared to those with a mild or moderate functional difficulty. The difference is prevalent among older adults aged 75 and older, with less wealth or multiple chronic diseases, or who live alone. Furthermore, among those with severe functional difficulties, the daughter advantage is more significant for fathers as compared to mothers., Discussion: Nowadays, daughters' families can provide high-quality informal care, often surpassing that offered by sons' families. This daughter advantage becomes even more significant among older adults who have a higher need for family care, such as those with severe disabilities and limited financial resources., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America.)

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.

Aims and Objectives: To investigate empirically the direct effect and potential mechanism of family resilience on patient-reported outcomes among young stroke dyads in China., Background: Young patients with stroke have been becoming an important public health issue. According to relevant theories and previous studies, we found that family resilience might play an important role in patient's symptoms. However, it is less clear about the specific relationship and potential mechanisms of these two variables., Design: We used a prospective cross-sectional design., Methods: A multi-item questionnaire was used to assess the constructs of interest. Researchers progressively constructed and validated conditional process models. The PROCESS macro was used to verify the research hypotheses., Results: A total of 560 questionnaires were collected in this study. We found that family resilience of stroke patients and their spouses had a direct effect on the physical, psychological and social aspects of patient-reported symptoms. We further revealed that caregiver preparedness partially mediated the relationship between family resilience and patient's symptoms in stroke patient-spouse dyads, while perceived social support moderated the relationship between caregiver preparedness and patient's symptoms. Finally, we observed that the impact of caregiver readiness and social support on patients' symptoms predominantly manifested in physical and physiological outcomes., Conclusions: Our research provides evidence about the positive impact of family resilience on patient-reported symptoms in young stroke dyads. Meanwhile, it further revealed how caregiver preparedness and perceived social support may play out in the relationship., Practice Implications: Our research introduces a novel perspective and pathway to enhance short-term recovery outcomes for patients. It also furnishes clinicians and nurses with evidence to guide the implementation of interventions aimed at improving patient health outcomes and facilitating smoother transitions from the hospital to home., Impact: What problem did the study address? Families play a crucial role in a patient's recovery process from illness, with family resilience serving as an important force for families to overcome adversity. However, the impact on patient symptoms and the underlying mechanisms of this relationship are uncertain. Empirical research is required to validate these aspects. What were the main findings? Family resilience has a positive impact on the physical, psychological and social aspects of patient-reported symptoms in young stroke dyads. Both the actor effect and partner effect are supported. The impact of caregiver readiness and social support on patient-reported symptoms is primarily observed in physical and physiological outcomes. Where and on whom will the research have an impact? This study offers a novel approach to enhance the short-term recovery of stroke patients. The researchers believe that the findings of this study will play an even more significant role during patients' transition from the hospital to home., Reporting Method: This study followed the STROBE statement of cross-sectional studies., Patient or Public Contribution: The study was conducted by patients, their spouses, healthcare professionals and the research team., (© 2024 John Wiley & Sons Ltd.)

Objectives: To examine the relationship between self-disclosure, social support, and psychological distress among caregivers of patients with advanced lung cancer, the study also examined the factors that impact psychological distress and the effect of social support on the relationship between self-disclosure and psychological distress., Methods: A total of 288 caregivers of patients with advanced lung cancer were selected using a convenience sampling method from December 2022 to July 2023 at a tertiary hospital in China. Participants' self-disclosure, perceived social support, and psychological distress were assessed by corresponding questionnaires, respectively. Mediating effects were detected using Amos 26.0 software., Results: The total scores for psychological distress, perceived social support, and self-disclosure of caregivers were 28.62 ± 6.45, 55.22 ± 7.81, and 38.39 ± 5.64, respectively. Correlation analysis suggested that psychological distress in caregivers was negatively correlated with both perceived social support and self-disclosure. Multiple linear regression analyses revealed that self-disclosure and perceived social support were influential factors of caregivers' psychological distress. Moreover, perceived social support partially mediated the relationship between self-disclosure and psychological distress, accounting for 54.37% of the total effect., Conclusion: Caregivers of patients with advanced lung cancer experience significant psychological distress. Self-disclosure can affect caregivers' psychological distress directly and indirectly through perceived social support. Healthcare professionals should be attentive to caregivers' psychological distress and carry out relevant nursing measures to improve caregivers' self-disclosure and social support to promote their physical and mental health., 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.)

Mild cognitive impairment (MCI) marks a critical phase in the progression to dementia. In our study, social workers utilized the Multicomponent Nonpharmacological Intervention Approach (MCNIA) to aid MCI participants (N = 52) and their caregivers, dividing into intervention and control groups. The intervention group underwent an additional regimen of non-pharmacological therapies besides pharmacological treatment. Our findings highlighted that: 1) MCNIA significantly enhanced cognitive and daily living abilities in the intervention group; 2) Caregivers experienced reduced burdens and improved social support; 3) Correlation analyses involving biomarkers indicated that MCNIA was particularly effective in alleviating depression in those with slightly more severe cognitive impairment.

Objectives: Concordance of preferences for end-of-life care regarding patients between patients with advanced cancer and family caregivers can improve the likelihood of honoring dying patients' wishes. However, there is a dearth of knowledge in mainland China. The purpose of this study was to examine patient-family caregiver concordance about patients' life-sustaining treatment preferences and associated factors among patients with advanced cancer in China., Methods: From September 2019 to December 2021, a convenience sample of 406 dyads of advanced cancer patient-family caregiver were recruited from 2 tertiary hospitals in Wuhan, China. Participants completed a questionnaire about patient's preferences for life-sustaining treatment, respectively. The concordance was assessed by percent agreement and kappa coefficients. Associated factors were identified by univariate analysis and binary logistic regression., Results: The average concordance rate on the preferences for life-sustaining treatment was 56.1%, ranging from 52.9% to 59.3%. Factors associated with a higher level of patient-family caregiver concordance were following: patients who were married, whose educational levels were at college or above, who had not been informed of diagnosis by a physician, who had been informed of the effects and side effects of related drugs by a physician, and who cared for a seriously ill family member or friend and caregivers whose educational level were primary or below., Conclusions: The patient-family caregiver concordance about patients' life-sustaining treatment preferences among patients with advanced cancer was poor. Patients' and caregivers' understanding of life-sustaining treatment and its efficacy in end-of-life should be facilitated. Relevant conversation should be encouraged between patients and caregivers, thus providing value-concordant end-of-life care for patients with cancer., Implications for Nursing Practice: Health professionals need to carry out advanced care planning in oncology departments on mainland China to encourage patients and caregivers to discuss patients' end-of-life care preferences. Facilitating patients' and caregivers' understanding of life-sustaining treatment preferences may help improve the patient-caregiver concordance on life-sustaining treatment preferences among patients with advanced cancer., 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.)

This empirical study examines the impact of internet usage on the life satisfaction of spousal caregivers responsible for elderly individuals with disabilities. Utilizing data from the China Health and Retirement Longitudinal Study (CHARLS), released in November 2023, we analyzed the health status and life satisfaction of these caregivers in the context of the recent rapid development of the internet. A stratified Proportionate to Size Sampling (PPS) approach was employed in this investigation. We assessed whether the life satisfaction of spousal caregivers is associated with internet use and whether internet adoption can moderate intergenerational relationships, interpersonal interactions, and political engagement among these caregivers. The study analyzed a sample of 760 individuals, with an average age of 60.31 years, and rural households comprising 77.14% of the sample. Our findings indicate a positive correlation between internet usage and the life satisfaction of spousal caregivers. This result enhances our understanding of the relationship between internet usage and life satisfaction in this context. Furthermore, this study supports the advancement of internet access for the aging population, assists elderly individuals in bridging the digital divide, and provides a theoretical foundation for the development of targeted, elderly-friendly internet policies by the government., (© 2024. The Author(s).)

Objective: To evaluate the effect of health science popularization in child caregivers by using social media of WeChat and Weibo in China in 2020. Methods: A questionnaire was designed based on the knowledge of children health from January to March 2020, and the public were invited to participate in the survey by visiting the official accounts of WeChat and Weibo of China CDC to analyze the awareness of health related knowledge and the change of daily behaviors in the child caregivers. Results: In the 1 325 child caregivers included in this survey, the awareness rate of chronic disease reexamine was lowest (74.94%), and the awareness rate of quality-oriented education was highest (99.55%). In the 7 questions in the questionnaire, the correct answer rate of the question about the reexamine of chronic disease was <75.00% (below the standard), the correct answer rate to other six questions were all ≥75.00% (above the standard). Logistic regression analysis showed that the education levels of senior high school or technical secondary school, junior college, bachelor's degree, master's degree or above, being worker, business/service personnel, teacher and company employee were the influencing factors for the awareness of the chronic disease related knowledge in child caregivers (all P <0.05). The daily behaviors of child caregivers after acquiring health knowledge were significantly improved (all P <0.001). Conclusions: In the season with high incidence of respiratory diseases, the use of new media platforms, such as WeChat and Weibo, to conduct health education had a good performance, resulting in higher rate of knowledge about healthy parenting and a significant improvement in daily behaviors in child caregivers. The results showed that the health education about the reexamine of chronic diseases in children should be focused on child caregivers with low education level, especially workers, business/service personnel.

Purpose: Despite the increasing research on cancer patient caregivers, there is still a lack of detailed understanding about the experiences of spouses caring for elderly colorectal cancer patients. This study aimed to fill this gap by examining the caregiving experiences of spouses during palliative chemotherapy for elderly Chinese colorectal cancer patients., Methods: Using a qualitative descriptive design, we recruited spousal caregivers of elderly colorectal cancer patients undergoing palliative chemotherapy. Semistructured interviews were conducted, and thematic analysis was employed to analyse the data., Results: Sixteen caregivers aged 60 to 82 years participated in the interviews. The analysis revealed three main themes: ambivalence, multiple role adaptation to conflicts, and the coexistence of hope and pressure. These themes shed light on the behaviors of older caregivers and the challenges they face, including physical and psychosocial issues associated with aging., Conclusion: This study highlights the significant stress and challenges experienced by older caregivers, characterized by intertwined emotions such as anxiety about their spouses' health deterioration, exhaustion from long-term care responsibilities, and anticipation of treatment outcomes., (© 2024. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

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.)

Objectives: To explore the relationship between filial values (responsibility, reciprocity, and obligation) and caregiving preparedness in adult child carers of patients with chronic heart failure (CHF)., Methods: A total of 339 adult child caregivers of CHF patients were recruited from six hospitals in China. Self-report questionnaires were used to measure caregivers' filial values and their caregiving preparedness. Descriptive analysis, Spearman's correlation analysis, and hierarchical regression analysis were performed. The study adhered to the STROBE guidelines., Results: Filial values were positively correlated with caregiving preparedness. Hierarchical regression analysis revealed a positive relationship between the combined variables of care and respect with caregiver preparedness, jointly explaining 7.9 % of the variance., Conclusions: Filial values promote caregiver preparedness, broadening the applicability of the Caregiver Empowerment Model., 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.)

Purpose: Effective nurse-child communication is a fundamental aspect of delivering pediatric nursing care. Family caregivers' global ratings to hospital are considered a proxy-reported measure for assessing a child's inpatient stay experience. We investigate the associations between nurse-child communication and family caregivers' global ratings to hospital., Design and Methods: A retrospective analysis of a national child patient experience survey data was conducted. Patient experience with nurse-child communication and the family caregivers' global ratings of hospital were measured using the Child Hospital Consumer Assessment of Healthcare Providers and Systems. Hierarchical linear models were constructed to examine the association between nurse-child communication measures and family caregivers' global ratings to hospital., Results: Data from 1010 patients at six National Regional Centers for Pediatric in China were collected. The overall rating of hospitals and the willingness to recommend the hospital showed increasing trends as the nurse-child communication score increased. How often nurses encourage children to ask questions was significantly associated with family caregivers' overall ratings of hospital and the family caregivers' willingness to recommend the hospital., Conclusions: Effective communication by nurses with the child is associated with significantly higher global ratings to the hospital by family caregivers during inpatient care. Encouraging children to ask questions is a promising contributor to caregivers' global ratings to hospital., Practice Implications: Pediatric nurses should emphasis encouraging children to ask questions for effective communication in nursing practice. Future research is also needed to develop more targeted strategies to assist pediatric nurse to communicate with child better., 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.)

This study examined the influence of Internet use on light-intensity physical activity (LPA) and moderate-to-vigorous physical activity (MVPA) among family caregivers of older adults, utilizing data from the 2018 China Health and Retirement Longitudinal Study (N = 3,194). The Tobit model and Propensity Score Matching were first used to test the focal associations. Subsequently, mediation analyses and heterogeneity analysis were conducted to explore the pathways and urban-rural disparities. The results indicated that Internet use was negatively associated with MVPA and was not correlated with LPA. The Internet use - MVPA relationship was mediated by participation in economic activities, while participation in social activities acted as a suppressor. Further, the focal association was only found in rural family caregivers. The findings suggest that effective health promotion interventions are needed to mitigate the negative influence of Internet use on the MVPA of family caregivers of older adults, especially for those in the rural., Competing Interests: Declaration of competing interest No potential conflict of interest was reported by the authors., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Objective: The research aims to investigate the impact of narrative nursing on the psychological well-being of nursing personnel in the context of the normalization of epidemic., Methods: A cohort of 170 frontline nursing staff at our institution was selected for this clinical study from January 1st to October 31st of 2023. The Symptom Checklist-90 (SCL-90) was employed to evaluate the psychological health of these frontline nursing personnel, compared to the standard norms for nurses in mainland China. Employing a randomized selection method, the cohort was divided into two groups: a control group (85 cases) receiving conventional nursing care and a research group (85 cases) receiving narrative nursing care. The duration of nursing intervention in both groups was set at 12 weeks. Various aspects of psychological well-being, work-related stress, psychological resilience, post-traumatic stress disorder, occupational burnout, job satisfaction, and coping strategies were assessed both before and after the nursing intervention., Results: Among the positive projects of 170 frontline nursing personnel, 32 exhibited positive symptoms, resulting in a positive rate of 18.82%. With the exception of the paranoia dimension score, the scores for other dimensions in the SCL-90 scale within the clinical group were notably higher than those observed in the norm group (P < .05). Among the ten items with the highest frequency of positive symptoms, anxiety, obsessive-compulsive symptoms, and hostility were identified as the most prevalent psychological health issues among frontline nursing personnel. Post-nursing intervention, the research group exhibited lower scores in dimensions other than paranoia in the SCL-90 scale compared to the control group (P < .05). The research group also displayed lower scores in SAS, SDS, SRQ, PCL-C, MBI-HSS and higher scores in CD-RISC and JWS post-intervention (P < .05). In the post-nursing intervention phase, the research group demonstrated lower scores in negative coping and higher scores in positive coping as per the SCSQ scale in comparison to the control group (P < .05)., Conclusions: Amidst the ongoing normalization of the epidemic, the psychological well-being of frontline nursing staff was lower than the established norms for nurses in mainland China. Notably, somatization, anxiety, and depression emerged as predominant manifestations. Narrative nursing was identified as an effective intervention to enhance nursing personnel's psychological well-being and coping strategies, ultimately regulating negative emotions, reducing post-traumatic stress disorder and occupational burnout, reducing stress levels, and enhancing job satisfaction and psychological resilience.

Purpose: This study aimed to explore the impact of informal care on the health of older adults, providing data to inform the development of informal care systems and social support policies for long-term care services in developing countries., Methods: Based on data from the 2018 Chinese Longitudinal Healthy Longevity Survey (CLHLS), this study employed the Propensity Score Matching (PSM) method to empirically analyze the effects of informal care on older adults' self-rated health, depression, and anxiety., Results: A total of 4790 older adults were included in the study sample, with 3194 receiving informal care and 1596 not receiving informal care. The results indicated that older adults who received informal care reported better self-rated health and had lower depression and anxiety scores compared to those who did not receive informal care. Among different groups, the positive effects of informal care on physical and mental health were more significant for very old adults, rural residents, and those without a spouse. Informal care had a greater positive impact on the physical health of women and the mental health of men., Conclusion: Government agencies should promote effective coordination between informal and formal care through financial support, awareness campaigns, and policy incentives. This will help to accelerate the improvement of the long-term care system and effectively meet the long-term care needs of older adults., (© 2024 Wiley Periodicals LLC.)

Purpose: This study aimed to explore the real experiences and needs of neonatal intensive care unit (NICU) preterm intergenerational caregivers for discharge preparation and provide a basis for nursing staff to formulate systemic and personalized health education plans and continuous nursing plans for preterm discharge., Design and Methods: This was a descriptive qualitative study. An objective sampling method was used to select 16 intergenerational caregivers of preterm infants admitted to the NICU of tertiary obstetrics and gynecology hospitals in Zhejiang and Jilin provinces from December 2023 to February 2024. Semi-structured interviews were conducted on the day of discharge of the preterm infants and six weeks after discharge. Colaizzi's seven-step analysis method was used to analyze the interview data., Results: Based on the existence, relatedness, and growth (ERG) theory, the discharge preparation experiences and needs of neonatal intergenerational caregivers in the NICU were summarized into three themes: psychological condition, care capacity condition, and multi-party support needs., Conclusions: In the process of hospital discharge preparation, intergenerational caregivers of premature infants in NICU have multiple needs, including enhancing nursing ability and obtaining psychological and multi-party support. It is helpful to take effective interventions to improve their readiness for discharge., Practice Implications: The nursing staff should develop personalized discharge health education plans and continuous nursing plans to improve the level of discharge preparation., Patient or Public Contributions: There were no patient or public contributions., Competing Interests: Declaration of competing interest None., (Copyright © 2024. Published by Elsevier Inc.)

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.)

Background: Adults with cognitive impairment are prone to living alone in large numbers but receive relatively little attention. This study aimed to evaluate whether living alone with cognitive impairment was associated with a higher burden of functional disability but lack of informal care., Methods: 982 observations of adults living alone with cognitive impairment and 50,695 observations of adults living with others and with normal cognition were identified from 4 waves (2011/2012, 2013, 2015, and 2018) of the China Health and Retirement Longitudinal Study (CHARLS). A matched comparator was selected using propensity score matching (1:2). Functional disability included disability in Activities of Daily Living (ADL), Instrumental Activities of Daily Living (IADL), and mobility. The time of receiving informal care was measured in monthly hours., Results: Adults living alone with cognitive impairment demonstrated significantly higher odds ratio of ADL disability (OR = 1.59, 95 % CI: 1.30, 1.95), IADL disability (OR = 1.19, 95 % CI: 1.00, 1.44), mobility disability (OR = 1.38, 95 % CI: 1.12, 1.70), but received fewer hours of informal care (β = -127.7 h per month, standard error = 25.83, P < 0.001), compared to the adults living with others and with normal cognition., Conclusions: This study highlights the high burden of functional disability but low coverage of informal care among Chinese adults living alone with cognitive impairment and calls for more resources to be allocated to this vulnerable subpopulation to improve the functional health and to increase the provision of long-term care services., Competing Interests: Declaration of competing interest There are no competing financial interests., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Objectives: The increase in the number of older adults with disability creates new challenges for caregivers. Benefit finding is the positive experience that caregivers get from caregiving, helping to reduce the negative impact on the caregiver's quality of life. However, there is less research on the positive experiences of family caregivers of older adults with disabilities. This study aimed to identify different benefit finding profiles among family caregivers of older adults with disabilities in China and to explore the sociodemographic characteristics and psychosocial factors with different benefit finding profiles., Methods: A cross-sectional study of 218 family caregivers of Chinese older adults with disabilities using the sociodemographic questionnaire, the Family-APGAR, the Sense of Coherence-13, the Emotion Regulation Scale and Benefit Finding Scale from October 2022 to June 2023 in communities and hospitals of China, Shenyang, Liaoning Province. Latent profile analysis was used to analyze the latent profiles of benefit finding among family caregivers of Chinese older adults with disability. Multiple logistic regression was used to explore the predictors of different profiles., Results: The benefit finding among family caregivers of Chinese older adults with disability can be classified into three potential profiles: Profile 1 - high-level benefit finding group (12.84%), Profile 2 - medium-level benefit finding group (43.58%), Profile 3 - low-level benefit finding group (43.58%). Working status, family function, and cognitive reappraisal of caregiver were predictors of different profiles., Conclusions: Nurses and community health care staffs should pay attention to the characteristics, family function, and emotion regulation strategies of family caregivers of older adults with different disability. Help family caregivers enhance family cohesion and cognitive reappraisal to improve positive experiences for caregivers in different profiles., Competing Interests: Declaration of competing interest None., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Objective: To assess Chinese-Australian carers' needs and preferences through co-design strategies with stakeholders to embed an evidence-based iSupport for Dementia program into routine community aged care services in Chinese ethno-specific aged care organisations., Methods: A cross-sectional survey was conducted from July to August 2022 in three Chinese ethno-specific aged care organisations in Australia. We applied a univariate analysis to test variables associated with carers' needs and preferences when embedding the iSupport for Dementia program into routine practice among community aged care services., Results: A total of 101 carers completed the survey. Most carers in our study preferred the iSupport program to be provided in their first language, have a program facilitator to lead the program and would like to interact with peers in the program. Most carers indicated that they are willing to pay for the iSupport program using the budget allocated to their home care package. Younger carers (younger than 65 years), and adult children's carers are more likely to use the web-based iSupport manual and invite their family members to the program compared to those older than 65 years. Other demographic characteristics had no significant association with their needs and preferences., Conclusions: Chinese-Australian carers' perceived needs and preferences in this study will inform the implementation of a culturally tailored iSupport program to be embedded in community aged care services provided by Chinese ethno-specific aged care organisations. Findings will also inform culturally and linguistically congruent iSupport programs for carers from other culturally and linguistically diverse communities in Australia., (© 2024 The Authors. Australasian Journal on Ageing published by John Wiley & Sons Australia, Ltd on behalf of AJA Inc’.)

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.

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: Self-efficacy, perceived social support, and resilience in caregivers of first-stroke patients are closely related, while the interaction mechanism remains unclear. This research explores the mediation effect of self-efficacy in the relationship between perceived social support and resilience in caregivers of first-stroke patients in China., Methods: Convenience sampling was designed and used to recruit participants from the General Hospital of Northern Theater in Shenyang, Liaoning Province, China, from February to October 2022, in which 207 self-reported participants completed the Connor-Davidson Resilience Scale (CD-RISC), Multidimensional Scale of Perceived Social Support (MSPSS) and General Self Efficacy Scale (GSES). In addition, the mediation effect of self-efficacy between perceived social support and resilience was determined by the PROCESS macro for SPSS., Result: Among the 207 caregivers of patients with first-stroke, the mean CD-RISC, MSPPS and GSES scores were (72.17 ± 11.28), (71.17 ± 8.99), and (29.64 ± 5.03) respectively. Caregivers' self-efficacy was positively correlated with perceived social support ( r  = 0.439, p  < 0.01) and resilience ( r  = 0.730, p  < 0.01). Self-efficacy served a mediation function partially between perceived social support and resilience, whose effect accounted for 52.90% of the total., Conclusion: Both simple and mediation roles of perceived social support and self-efficacy are established in the relationship of resilience among caregivers of first-stroke patients. Positive social support and self-efficacy are two important targets for future interventional studies, and interventions on them may synergistically improve resilience. Hence, the nurses and community workers should correctly evaluate social support and self-efficacy, confirm the health education requirements, and implement counseling intervention to protect and improve the health of first-stroke patients and their families.

Vaccination decisions are influenced by various psychological and practical factors. In China, non-National Immunization Program (non-NIP) vaccines, which are voluntary and self-paid, add uncertainty and autonomy to the decision-making process. Effective communication between providers and recipients is crucial but understudied. This study aims to integrate their perspectives, identify strategies for facilitating vaccination decisions, and analyze their mechanisms. From July to December 2023, semi-structured interviews were conducted with 17 caregivers and 12 vaccination providers across five Chinese provinces. Participants shared their experiences and decision-making processes regarding non-NIP vaccines. The Behaviour Change Wheel framework guided the analysis, utilizing iterative coding and directed content analysis. Thirteen Behavior Change Techniques were identified, with feedback, monitoring, and environmental restructuring being the most common. Key intervention functions included Persuasion, Education, and Training. We further mapped how these interventions influence non-NIP vaccine decisions. Capability was enhanced through education and effective communication, providing necessary knowledge and skills. Opportunity was increased via infrastructural improvements and societal support, making vaccines more accessible and endorsed by the community. Motivation was driven by clear communication of vaccination benefits and risks, reinforced by societal norms through public health messaging. By understanding the mechanisms influencing vaccination behaviors and interacting with stakeholders, tailored strategies can be developed. Healthcare providers can enhance service accessibility and offer evidence-based guidance with reminders, monitoring, and incentives to ensure compliance. For recipients, reliable information, sustained engagement, timely communication, and motivational opportunities are essential. A multi-dimensional approach involving multiple stakeholders is crucial for promoting non-NIP vaccine uptake.

Background: Older adults living in elderly caring social organizations (SOs) are prone to suffer from depression. Many studies have found correlations between environmental and quality-of-life factors and depression; however, evidence from elderly caring SOs is rare, particularly in China., Methods: A cross-sectional study was conducted among service recipients in elderly caring SOs in Anhui and Chongqing, China. Data on demographic and health-related characteristics, living environment factors, and service quality satisfaction factors in 2171 older adults were used for analysis. The binary logistic regression model was conducted to estimate the association between living environment and service quality satisfaction factors and depression., Results: Our results indicated that living environment factors in terms of exposure to suitable temperature and humidity (OR = 0.655; 95 % CI: 0.446, 0.963), green coverage >30 % (OR = 0.432; 95 % CI: 0.337, 0.553) were associated with lower odds of developing depression. Also, an opposite relationship was found in the noise factor (OR = 1.985; 95 % CI: 1.395, 2.823). Higher satisfaction with admission and discharge services, dietary services, entertainment services, and psychological support services were also found to be associated with a lower risk of depression., Limitations: A cross-sectional design precluded determining whether living environment, service quality satisfaction, and depression are causally related. Measurement of living environment factors and service quality satisfaction factors needs to be further clarified comprehensively., Conclusions: Enhancing the living environment and the quality of the services provided to seniors in the elderly caring SOs is conducive to the reduction of the likelihood of depression., 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 B.V. All rights reserved.)

Lay Abstract: Even though there are about 10 million Chinese autistic individuals, we know little about autistic adults in China. This study examined how well young autistic adults in China integrate into their communities (such as having a job, living independently and having friends) and how satisfied they are with their lives as reported by their caregivers. We compared them to autistic adults with similar characteristics (such as high support needs) from the Netherlands. We included 99 autistic adults in China and 109 in the Netherlands (18-30 years). In both countries, autistic adults were reported to have a hard time fitting into their communities. They often had no work, did not live on their own and had few close friends. Also, in both countries, caregivers reported that autistic adults felt low satisfaction with their life. Chinese adults were less satisfied with their life than Dutch adults, as indicated by their caregivers. This could be because of a lack of support for autistic adults in China, higher parental stress in Chinese caregivers, or general cross-country differences in happiness. Only in the Dutch group, younger compared with older adults fitted better into their communities, and adults without additional psychiatric conditions were reported to have higher life satisfaction. Country was a significant predictor of independent living only, with Dutch participants more likely living in care facilities than Chinese participants. In conclusion, our study shows that autistic adults with high support needs generally face similar challenges in both China and the Netherlands., Competing Interests: Declaration of conflicting interestsThe authors declared no potential conflicts of interest with respect of the research, authorship, and/or publication of this article.

Aims: Based on the two-factor model of caregiving appraisals, this study aims to (1) investigate the relationships between competence in dementia care and job satisfaction (work attitudes in positive aspect) and turnover intention (work attitudes in negative aspect) among formal caregivers in nursing homes, and (2) examine the mediating roles of positive aspects of caregiving (caregiving appraisals in positive aspect) and caregiving burden (caregiving appraisals in negative aspect) in the above associations., Design: A cross-sectional design was used. Structural equation modelling was employed to test the proposed model. STROBE checklist guides the reporting of this study., Methods: Using the multistage cluster sampling method, 407 formal caregivers were selected from 43 nursing homes across 7 districts/counties in China., Results: The proposed model shows a good model fit. Competence in dementia care shows significant positive associations with increased job satisfaction and decreased turnover intention among formal caregivers in nursing homes. Caregiving burden and positive aspects of caregiving mediate the relationships between competence in dementia care and both job satisfaction and turnover intention. Furthermore, the relationship between positive aspects of caregiving and job satisfaction is stronger than that with turnover intention, but the relationship between caregiving burden and turnover intention is not stronger than that with job satisfaction., Conclusions: The results demonstrate that the two-factor model of caregiving appraisals effectively elucidates the associations and underlying mechanisms between competence in dementia care and formal caregivers' work attitudes. Specifically, two crucial conclusions are drawn: (1) competence in dementia care is associated with higher levels of job satisfaction and lower levels of turnover intention among formal caregivers in nursing homes; (2) caregiving burden and positive aspects of caregiving serve as parallel mediators in these associations., Implications for the Profession And/or Patient Care: Policymakers and nursing homes managers should implement a series of measures aimed at formal caregivers in nursing home. Specifically, allocating more resources to enhance the competence in dementia care of formal caregivers is crucial, given its significant association with elevated job satisfaction and reduced turnover intention. Besides, positive and negative caregiving appraisals emerge as proximal factors influencing work attitudes of formal caregivers. Therefore, intervention projects focused on formal caregivers in nursing home should target enhancing positive experiences and alleviating caregiving burden., Patient or Public Contribution: No patient or public contribution., (© 2024 John Wiley & Sons Ltd.)

Background: Chronic kidney disease (CKD) is the third most common cause of death after cancer and heart disease. The continuous treatment of children with CKD was greatly challenged during the COVID-19 pandemic, which significantly impacted the CKD children's prognosis and the caregivers' psychological status. However, the influence mechanism of socioeconomic status, medical delay duration, traffic pressure, and online consultation duration on caregivers' hope and psychological resilience still lacks relevant evidence., Methods: This study investigated the general social information, hope, and psychological resilience of 247 caregivers with CKD in 13 provinces of China in March 2020. Factor analysis and an exploratory Structural Equation Model ( SEM ) were used to find the best-fit model, and Bootstrapping was used to calculate the 95% CI of indirect effects., Results: The factor analysis obtained four common factors, namely, socioeconomic status (annual family income, education, and career stability), medical accessibility (online consultation duration, medical delay duration, and traffic pressure), hope (positive attitude, positive action, and intimate relationship) and psychological resilience (optimism, tenacity, and strength), with the cumulative contribution rate of 65.34%. Bootstrapping obtains the socioeconomic status β = 0.30 (95% CI [0.14, 0.47], P = 0.002), medical accessibility β = 0.31 (95% CI [0.12, 0.47], P = 0.002), and hope β = 0.40 (95% CI [0.27, 0.52], P = 0.002) has a direct impact on psychological resilience of CKD children caregivers, followed by medical accessibility β = 0.20 (95% CI [0.10, 0.38], P = 0.001) and hope β = 0.23 (95% CI [0.16, 0.32], P = 0.001) plays a mediating role between socioeconomic status and psychological resilience. The indirect impact effect β = 0.35 (95% CI [0.25, 0.50], P = 0.001) is greater than the direct impact effect β = 0.30 (95% CI [0.14, 0.47], P = 0.002)., Conclusions: Sufficient attention should still be given to children with immunodeficiency after the COVID-19 pandemic, such as CKD, to avoid infection of deadly. Secondly, the government should vigorously develop Primary medical institutions to ensure efficient treatment of severe patients in tertiary hospitals; Finally, the professional literacy of medical workers in remote diagnosis and treatment should be improved to enhance the country's emergency response capacity for similar major public events and the requirements for normalised epidemic prevention and control., (© 2024. The Author(s).)

Background: There is a lack of evidence regarding the effectiveness of empowerment healthy education for caregivers of Alzheimer's patients., Objective: To explore the effectiveness of the intervention of health education guided by empowerment theory on dementia knowledge, caregiving readiness, positive caregiving emotions, anxiety, and depression in informal Alzheimer's disease caregivers., Design: A single-blinded, randomized controlled trial., Setting: A teaching hospital in Tianjin, China., Participants: Eighty caregivers of Alzheimer's disease patients., Methods: Participants were recruited from the hospital and randomly assigned to either experimental or control group. The experimental group underwent a 12-weeks, one-to-one intervention of six session lasting 45-60 min each. The control group received conventional health education. Outcome measures included dementia knowledge, caregiver readiness (primary outcomes), positive caregiving emotions, anxiety, and depression (secondary outcomes)., Results: After 12 weeks, the intervention group exhibited significantly higher levels of dementia knowledge, caregiver readiness, and positive caregiving emotions compared with the control group. Furthermore, levels of hospitalization-related anxiety and depression were lower in the intervention group. All study results of this study showed statistically significant differences ( p  < 0.05)., Discussion: Empowerment theory-based health education appears to be an effective intervention for improving caregiver and readiness to care for caregivers of Alzheimer's disease individuals. The intervention may help reduce caregivers' anxiety and depression levels., 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 Liu, Wang, Wei, Liu, Bian, Wang and Du.)

Introduction: It remains difficult for patients with spinal cord injury (SCI) to fully recover their sensory and motor functions; thus, they must rely on the assistance of caregivers to complete activities of daily living. This leads to psychological distress and decreased quality of life in patients and caregivers. Interventions for dyadic coping are a promising option. However, no studies have examined the effects of dyadic coping interventions on patients with SCI and their spouses. Therefore, our team constructed a dyadic coping intervention programme for couples with SCI., Method and Analysis: This two-arm, parallel-design, pilot randomised controlled trial will recruit 72 couples with SCI from two tertiary hospitals in Hefei, China. Couples will be randomly allocated to two arms. Couples randomly assigned to the intervention group will receive the usual care and the dyadic coping intervention. Couples randomly assigned to the control group will receive usual care only. The primary outcomes will be the feasibility and acceptability of the dyadic coping intervention for couples with SCI. Secondary outcomes will be quality of life, psychological distress, caregiver burden, marital satisfaction and dyadic coping. Outcomes will be collected at three time points: baseline (T0), post-intervention (T1) and after a follow-up period of 8 weeks (T2)., Ethics and Dissemination: This study has been approved by the Research Ethics Committee of Anhui Medical University (84240008). The results will be published in a peer-reviewed journal., Trial Registration Number: ChiCTR2300074556., 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: Ensuring the wellness of older individuals with disabilities requires prioritising the care needs of their carers. However, current practice lacks validated tools to measure the needs of carers in home environments. Thus, this study aimed to create and test a questionnaire on the care needs of family carers of older people with disabilities in China., Methods: We used a standard development process to generate the questionnaire. The pilot testing included cognitive interviews to ensure interpretation as intended. Furthermore, we used a cross-sectional study method to conveniently select 640 Chinese family carers of older people with disabilities from August 1, 2022, to June 11, 2023, for face-to-face investigation. Exploratory factor analysis (EFA) aided in project reduction and factor estimation, with 30 participants undergoing retest evaluations every two weeks. Confirmatory factor analysis (CFA) assessed the model's structural validity, while internal consistency and retest reliability validated its accuracy., Results: These tests established the model: content validity, item analysis and EFA. Six factors extracted from the initial analysis explained 62.891% of the observation variance. CFA showed good model fit, and the questionnaire had good reliability and validity. The final questionnaire included 21 items focusing on six dimensions: care assistance (three items), care environment (three items), care information (three items), formal support (four items), care ability (six items) and self-development (two items)., Conclusion: The care needs questionnaire effectively evaluates the needs of family carers in their caring activities., (© 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.)

Objective: This study aimed to assess the knowledge, attitudes, and practices (KAP) among family caregivers of patients with cerebral infarction toward home-based care., Methods: This web-based cross-sectional study was conducted between October 2023 and February 2024 at Yancheng Third People's Hospital. A self-designed questionnaire was developed to collect demographic information, and assess the KAP among family caregivers of patients with cerebral infarction toward home-based care., Results: A total of 761 questionnaires were included in the study. Among the participants, 453 (59.53%) were female, and 548 (72.01%) lived with the patients. The mean knowledge, attitudes and practices scores were 6.67 ± 1.73 (possible range: 0-9), 32.95 ± 2.46 (possible range: 9-45), and 28.64 ± 4.39 (possible range: 8-40), respectively. Path analysis showed the direct effect of knowledge on both attitudes ( β  = 0.885, p  < 0.001) and practices ( β  = 1.295, p  < 0.001), as well as of attitudes on practices ( β  = 0.838, p  < 0.001)., Conclusion: Family caregivers of patients with cerebral infarction have sufficient knowledge, positive attitudes and proactive practices toward home-based care. However, they still exhibit deficiencies in certain aspects of knowledge, attitudes, and practice. Developing personalized educational strategies may be instrumental in enhancing family caregivers' knowledge of home-based care. This, in turn, could improve their attitudes and elevate their practice levels., 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 Chen, Zhou, Jiang, Song, Wang, Zhao, Liu, Ma and Yu.)