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BACKGROUND AND AIMS: Arginase 1 deficiency (ARG1-D) is a ultrarare disease with manifestations that cause mobility and cognitive impairment that progress over time and may lead to early mortality. Diseases such as ARG1-D have a major impact also outside of the health care sector and the aim of this study was to estimate the current burden of disease associated with ARG1-D from a societal perspective. METHODS: The study was performed as a web-based survey of patients with ARG1-D and their caregivers in four European countries (France, Portugal, Spain, United Kingdom). The survey was distributed at participating clinics and included questions on e.g. symptoms (including the Gross Motor Function Classification System, GMFCS, and cognitive impairment), health care use, medication, ability to work, caregiving, and impact on health-related quality-of-life (HRQoL) using the EQ-5D-5L. RESULTS: The estimated total mean societal cost per patient and year was £63,775 (SD: £49,944). The cost varied significantly with both mobility impairment (from £49,809 for GMFCS level 1 to £103,639 for GMFCS levels 3-5) and cognitive impairment (from £43,860 for mild level to £99,162 for severe level). The mean utility score on the EQ-5D-5L for patients was 0.498 (SD: 0.352). The utility score also varied significantly with both mobility impairment (from 0.783 for GMFCS level 1 to 0.153 for GMFCS level 3-5) and cognitive impairment (from 0.738 for mild level to 0.364 for severe level). CONCLUSIONS: Similar to other studies of rare diseases, the study is based on a limited number of observations. However, the sample appear to be reasonably representative when comparing to previous studies of ARG1-D. This study shows that ARG1-D is associated with a high societal cost and significant impact on HRQoL. Earlier diagnosis and better treatment options that can postpone or withhold progression may therefore have a potential for improved HRQoL and savings for the patient, caregiver, and society.

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

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The population experiencing Alzheimer's disease (AD) and their caregivers have been tremendously impacted by the global COVID-19 pandemic. Outpatient services became less accessible during the pandemic lockdown which caused increased caregiver burden more than usual. Further examination discovered that caregivers were unable to properly take care of themselves because of the need to provide around-the-clock care to loved ones, who pre-pandemic were able to receive supplemental caregiving services. The purpose of this integrative review was to provide a synthesis of information regarding caregiver experiences, during a time of limited resources, such as with the COVID-19 global pandemic. A comprehensive search of the literature databases Cumulative Index to Nursing and Allied Health Literature (CINAHL) and Medline was completed yielding qualitative and mixed-methods studies. The literature search yielded 14 articles which met the criteria. Three themes emerged during this review. They include: Deprivation of self-care and social connectedness, Fragmented care and resources, and Improved policy development. Multiple gaps in caregiver needs have been identified throughout the literature. Outpatient services, home health aides, and respite care remain necessary elements of care for those with AD and for the relief of the caregiver. Forward planning should include government policies to support caregiving of those with AD, especially in the light of service restrictions or unavailable services.

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BACKGROUND: This study will pilot-test the mobile app, Medication Safety @HOME-Meds@HOME intervention to improve medication administration accuracy, reduce preventable adverse drug events, and ultimately improve chronic care management for children with medical complexity (CMC). The Meds@HOME app was co-designed with CMC families, secondary caregivers (SCGs), and health professionals to support medication management for primary caregivers (PCGs) and SCGs of CMC. We hypothesize that Meds@HOME will improve caregivers' medication administration accuracy, reduce preventable adverse drug events, and ultimately improve chronic care management. OBJECTIVE: This study aims to evaluate the effectiveness of Meds@HOME on medication administration accuracy for PCGs and SCGs. METHODS: This study will recruit up to 152 PCGs and 304 SCGs of CMC who are prescribed at least 1 scheduled high-risk medication and receive care at the University of Wisconsin American Family Children's Hospital. PCGs will be randomly assigned, for the 6-month trial, to either the control group (not trialing Meds@HOME) or the intervention group (trialing Meds@HOME) using 1:1 ratio. The Meds@HOME app allows caregivers to create a child profile, store medication and care instructions, and receive reminders for upcoming and overdue care routines and medication refills. Surveys completed both at the start and end of the trial measure demographics, medication delivery knowledge, confidence in the CMC's caregiving network, and comfort with medical information. Univariate and multivariate generalized estimation equations will be used for primary statistical analysis. The primary outcome is the PCG's rate of medication administration accuracy measured as correct identification of each of the following for a randomly selected high-risk medication: indication, formulation, dose, frequency, and route at baseline and after 6 months. Secondary outcomes include SCG medication administration accuracy (indication, formulation, dose, frequency, and route), count of University of Wisconsin hospital and emergency department encounters, PCG-reported medication adherence, count of deaths, and PCG medication confidence and understanding. RESULTS: Recruitment for this study began on November 29, 2023. As of May 15, 2024, we have enrolled 94/152 (62%) PCGs. We expect recruitment to end by August 1, 2024, and the final participant will complete the study by January 28, 2025, at which point we will start analyzing the complete responses. We expect publication of results at the end of 2025. CONCLUSIONS: The Meds@HOME mobile app provides a promising strategy for improving PCG medication safety for CMC who take high-risk medications. In addition, this protocol highlights novel procedures for recruiting SCGs of CMC. In the future, this app could be used more broadly across diverse caregiving networks to navigate complex medication routines and promote medication safety. TRIAL REGISTRATION: ClinicalTrials.gov NCT05816590; https://clinicaltrials.gov/study/NCT05816590. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/60621.

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ABSTRACT: Communication is an essential aspect of care for all patients but is especially important for individuals with Alzheimer's disease or other forms of dementia. Nurses who care for persons living with dementia (PwD), as well as family members and caregivers, need understanding of verbal and nonverbal communication techniques and approaches that are effective throughout the stages of dementia. Spiritual assessment and care also are critical. This article provides evidence-based and biblical examples for communication as a healing art in caring for PwD.

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Domestic dogs have been shown to copy their caregiver's actions, including ones which are causally-irrelevant to a physical goal-a behaviour called "overimitation". In a new overimitation task with a non-food reward, this study investigated "causal misunderstanding"-falsely assuming causally-irrelevant actions to have functional relevancy-as an explanation for dog overimitation (N = 81). By providing dogs with prior experience of the task to learn about the consequences of its irrelevant box-stepping and relevant bucket-opening action to obtain a toy-ball, we tested whether and when dogs would copy their caregiver's irrelevant-action demonstrations. Dogs with and without prior experience were compared to a third (control) group of dogs, who had neither prior experience nor caregiver demonstrations of the task. Results revealed that the timing of overimitation, rather than its frequency, was closely related to dogs' prior experience: dogs with prior experience attended to their reward first, then interacted with the irrelevant box later ("post-goal overimitation"), while dogs without prior experience first interacted with the irrelevant box ("pre-goal overimitation"). Our results suggest that, when action consequences are understood, dogs are overimitating for a secondary social goal that is clearly distinct from the task goal of obtaining a physical reward.

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The objective of this systematic review was the evaluation of the burden of family caregivers of patients on hemodialysis and its correlation with caregivers' quality of life. Articles from PubMed and Scopus published between 2012 to 2022 were retrieved from using the key words burden, family caregivers, quality of life, and hemodialysis patients. Articles reviewed included quantitative data indicating the family caregiver burden ranged from moderate to severe. The correlation between burden and quality of life was negative. Nephrology nurses in hemodialysis units should contribute to the design and implementation of educational programs and support strategies for family caregivers of patients on hemodialysis to support caregivers, reduce their burden, and improve their quality of life.

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INTRODUCTION: Rural cancer caregivers experience obstacles in accessing services, obtaining respite, and ensuring their care recipients receive quality care. These challenges warrant opportunities to participate in evidence-based behavioral intervention trials to fill support gaps. Adaptation to rural settings can facilitate appropriate fit, given higher caregiver service needs and unique challenges. We present findings from the adaptation process of a psychoeducational intervention designed to support cancer caregivers in rural settings. METHODS: We adapted Reblin's CARING intervention, designed for neuro-oncology, to target caregivers of rural cancer patients across cancer sites. First, we conducted formative work to determine the unmet social and supportive care needs rural cancer caregivers faced. We used the Framework for Reporting Adaptations and Modifications to Evidence-based Implementation Strategies (FRAME-IS) to guide the modifications. To conduct the adaptation, we elicited feedback through qualitative interviews of seven caregivers and three cancer hospital staff and thematic analysis to inform intervention modifications. Our qualitative study was guided by the Consolidated Criteria for Reporting Qualitative Research (COREQ). RESULTS: Interviews revealed that service access was a pressing need, along with financial (e.g., treatment costs, employment challenges) and geographic barriers (e.g., distance to treatment, road conditions). We modified content, training, and context using the FRAME-IS steps. Changes enhanced fit through the following adaptations: changes to social support domains, session content, interventionist training, resource offerings, screening and recruitment processes, and virtual delivery. DISCUSSION: Challenges to establishing successful psychosocial oncology interventions may be improved through participant-centered approaches and implementation science. Additional systemic challenges, including lack of systematic documentation of caregivers, persist and may especially disadvantage under-represented and underserved groups, such as rural dwellers. The enCompass intervention is undergoing ongoing single-arm pilot of rural cancer patient/caregiver dyads targeting caregiver coping self-efficacy and patient/caregiver distress (Clinical Trials #NCT05828927).

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Introduction: Informal caregiving is a critical component of the healthcare system despite numerous impacts on informal caregivers' health and well-being. Racial and gender disparities in caregiving duties and health outcomes are well documented. Place-based factors, such as neighborhood conditions and rural-urban status, are increasingly being recognized as promoting and moderating health disparities. However, the potential for place-based factors to interact with racial and gender disparities as they relate to caregiving attributes jointly and differentially is not well established. Therefore, the primary objective of this study was to jointly assess the variability in caregiver health and aspects of the caregiving experience by race/ethnicity, sex, and rural-urban status. Methods: The study is a secondary analysis of data from the 2021 and 2022 Behavioral Risk Factor Surveillance System (BRFSS) from the Centers for Disease Control and Prevention. Multivariable logistic regression or Poisson regression models assessed differences in caregiver attributes and health measures by demographic group categorized by race/ethnicity, sex, and rural-urban status. Results: Respondents from rural counties were significantly more likely to report poor or fair health (23.2% vs. 18.5%), have obesity (41.5% vs. 37.1%), and have a higher average number of comorbidities than urban caregivers. Overall, rural Black male caregivers were 43% more likely to report poor or fair health than White male caregivers (OR 1.43, 95% CI 1.21, 1.69). Urban female caregivers across all racial groups had a significantly higher likelihood of providing care to someone with Alzheimer's disease than rural White males (p < 0.001). Additionally, there were nuanced patterns of caregiving attributes across race/ethnicity*sex*rural-urban status subgroups, particularly concerning caregiving intensity and length of caregiving. Discussion: Study findings emphasize the need to develop and implement tailored approaches to mitigate caregiver burden and address the nuanced needs of a diverse population of caregivers.

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BACKGROUND: Interstitial lung disease (ILD) is comprised of a heterogeneous group of pulmonary diseases. Oxygen therapy is used in patients with advanced lung disease; however, there are challenges associated with initiation of oxygen therapy specific to individuals with ILD. The key objectives of this study were to create a common understanding of the facilitators and barriers to oxygen therapy for patients with ILD, and healthcare professionals (HCP) caring for patients with ILD. METHODS: This qualitative study included 1 hour semistructured focus groups/interviews. An iterative and concurrent process was used for data collection and analysis to allow for supplementary development of themes and concepts generated. Data analysis used a three-phase approach: coding, categorising and development of themes. RESULTS: A total of 20 patients and/or caregivers and 31 HCP took part in 34 focus groups/interviews held over 3 months (November 2022-January 2023). Facilitators to oxygen therapy were identified including support from HCP and support groups, the perseverance and self-advocacy of patients, a straightforward administrative process and vendors/private industry that expedite access to oxygen therapy. There were also several barriers to accessing oxygen therapy for patients with ILD. The themes identified include rural disparity, testing requirements and qualifying for funding and the need for ILD-specific evidence base for oxygen therapy. CONCLUSION: Further research is needed to facilitate development of specific exertional oxygen criteria for patients with ILD, to create supports for oxygen use and monitoring and to enable providers to tailor therapy to patients. Oxygen therapy education for ILD should address the benefits and risks of oxygen therapy.

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Objective To investigate the status and influencing factors of pressuring feeding style among caregivers in remote rural areas of Sichuan province. Methods Multistage sampling was conducted to select infants of 6-11 months old who had received complementary food and their caregivers in remote rural areas of Sichuan province.A questionnaire was used to collect sociodemographic characteristics of infants and their caregivers,pressuring feeding behaviors,feeding environment,and caregivers' negative emotions.Quantile regression was employed to analyze the factors influencing pressuring feeding among caregivers of infants. Results A total of 1358 pairs of infants and their caregivers were included,with the pressuring feeding behavior score of 11 (8,14).Parity was the protective factor for caregivers' pressuring feeding (ß25=-1.17,P<0.001;ß50=-1.40,P=0.002;ß75=-2.18,P<0.001).Whether infants played with toys while eating (ß25=1.00,P<0.001;ß50=1.20,P=0.003;ß75=1.42,P<0.001) and whether infants watched TV/mobile phones (ß25=0.50,P=0.048;ß50=1.07,P=0.004) were the risk factors.At the 75th percentile,caregivers' negative emotions were the risk factor for pressuring feeding (ß75=0.94,P=0.015).Caregivers' education background (ß25=0.83,P=0.034;ß50=0.87,P=0.021) and family income (ß75=1.09,P=0.012) were also significantly associated with pressuring feeding scores at different quartile points. Conclusion Pressuring feeding behaviors of caregivers in remote rural areas of Sichuan province need to be improved.Based on the characteristics of infants and their families,guidance should be carried out to improve the feeding environment and the mental health of caregivers,thereby promoting reasonable feeding behaviors among caregivers of infants in rural areas.

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INTRODUCTION: In sub-Saharan Africa (SSA), the number of cancer deaths is expected to double between 2020 and 2030; however, financial costs remain a barrier to accessing cancer treatment and care. There is an evidence gap on financial toxicity related to cancer care in SSA, both for the patient and for the family members providing care. Against this background, this review aims to analyse cancer care-related financial toxicity for the patient and family caregivers in SSA. METHODS AND ANALYSIS: A comprehensive search of peer-reviewed articles in the English language reporting the financial burden of cancer care on patients and family caregivers in SSA will be conducted using PubMed, Scopus and Web of Science from 1 January 2000 to 13 October 2023. Two researchers will independently review the titles, abstracts and full-text articles, and any disagreements will be resolved through consensus. A risk of bias assessment will be conducted using the assessment tools from the Joanna Briggs Institute Critical Appraisal Checklist. A quantitative and narrative synthesis of included studies, including the prevalence of financial toxicity of cancer care in SSA, will be developed. The review will be reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. ETHICS AND DISSEMINATION: Ethical review is not required because this review draws on published literature. The results will be presented at leading cancer and public health conferences, published in peer-reviewed journals and disseminated via website posts and social media channels to improve access to cancer care and to facilitate evidence-based policymaking in SSA. PROSPERO REGISTRATION NUMBER: CRD42023469011.

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BACKGROUND: Having traditionally received limited attention in empirical research and safety improvement agendas, issues of patient safety in mental healthcare increasingly feature in healthcare quality improvement discourses. Dominant approaches to safety stem from narrow clinical risk management perspectives, yet existing evidence points to the limitations of this characterisation. Although mental healthcare is increasingly delivered in community-based settings, narratives of safety pertain primarily to hospital-based mental healthcare. Therefore, through exploratory qualitative interviews and one focus group, we aimed to examine how service users, carers, and healthcare providers conceptualise 'patient safety' in community-based mental healthcare. METHODS: Semi-structured interviews and a single focus group were conducted with users of UK community-based mental healthcare provision for adults (n = 13), their carers (n = 12), and providers (n = 18), who were diverse in characteristics and experiences. Study data were analysed in accordance with a reflexive approach to thematic analysis. FINDINGS: Four key themes were developed, reflecting contrasting conceptualisations of safety in this care context, where participant thinking evolved throughout discussions. 'Systemic inertia: threats to safety' characterises the entrenched, systemic challenges which rendered participants powerless to advocate for or deliver safe care. 'Managing the risks service users present' equates 'safe care' to the mitigation of risks service users may pose to themselves or others when unwell, or risks from those around them. 'More than responding to risks: everyone plays a role in creating safety' recognises providers' agency in causing or proactively preventing patient harm. Finally, 'The goals of 'safety': our destination is not yet in sight' positions safety as a work in progress, calling for ambitious safety agendas, giving primacy to goals which meaningfully improve service users' lives. CONCLUSIONS: Our findings have implications for the understanding and improvement of patient safety in community-based mental healthcare settings, where improvement objectives should transcend beyond management of risks and preventing deterioration to address patient and carer-centred concerns, including practices that make people feel unsafe.

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BACKGROUND: People with intellectual disabilities remain disadvantaged in many aspects of everyday life. Capability approach is an underused approach in social care research and has at its core the importance of having capabilities or opportunities to do what we value. We use this approach to explore how people with intellectual disabilities can be supported to lead flourishing lives. METHODS: Interviews and focus groups were conducted with 50 people with intellectual disabilities and 28 family carers. Data were analysed using an adapted template approach and conceptual analysis. RESULTS: Our analysis led to the identification of one overarching theme; 'Doing what you love and growing' and sub-themes; 'Choice, opportunity and empowerment', 'Being out in the world' and 'Lowered expectations and static lives'. CONCLUSION: People with intellectual disabilities can lead capability-deprived lives. Methodological and practice innovation is needed to better understand what people value and ensure they have capability sets that enable flourishing lives.

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Patients managing central venous catheters (CVCs) outside of hospitals need training in CVC care. Using 3 focus groups, the study identified themes in how health care personnel (HCP) prepare patients and their caregivers for CVC care at home. Four major themes and 25 nested subthemes were identified: (1) providing the right amount of education at the right time, (2) tailoring education to patient needs, (3) developing patient education tools, and (4) managing differences in recommendations to patients. HCPs in the study ensured patients and caregivers learn what they need to know when they need to know it, using appropriate patient education tools. Patients and caregivers are largely responsible for CVC care and central line-associated bloodstream infection prevention outside of acute care hospitals and long-term care settings, and HCP take seriously their obligation to provide them with appropriate education and tools to best enhance their ability to keep themselves safe.

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INTRODUCTION: Professional caregivers' perspectives on dementia and on people living with dementia (PlwD) can influence their feelings, judgements and behaviours in work situations, for example, how they think about symptoms, disease progression and the impact on a person's quality of life. Their individual dementia mindset, which can be investigated with the 12-item Dementia Mindset Scale (DMS), might influence job satisfaction, work-related well-being and person-centred care. The aim of the proposed replication study is to confirm the results of the original study of the DMS and to test whether a malleable mindset is correlated with higher levels of caregiver education, dementia-specific professional experience/competence and dementia knowledge. METHODS AND ANALYSIS: Professional caregivers in residential care facilities for older persons who work directly with PlwD will be asked to answer an anonymous web-based online survey. The survey encompasses five standardised questionnaires: the DMS, the Dementia Knowledge Assessment Scale, the Oldenburg Burnout Inventory, the Job-related Affective Well-being Scale and the Sense of Competence in Dementia Care Staff Scale. In addition, job satisfaction, the educational background, professional experience and work situation are surveyed. For replication, the analyses will re-evaluate the psychometric properties (structural validity, model fit, internal consistency and predictive validity) by applying descriptive statistics, regression analysis, confirmatory factor analysis and correlation analysis. The additional analyses will use descriptive statistics, regression analysis and correlation analysis. Rasch analysis will be used to rank the difficulty of the items. ETHICS AND DISSEMINATION: This study was approved by the ethics committee of the German Society of Nursing Science (ID number 23-004). No personal information will be gathered. The results of the study will be distributed nationally and internationally through peer-reviewed academic journals, conferences, institutional websites and journals for nursing care practice.

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Background: Due to the need to increase social awareness about dementia and the needs of patients living with dementia in Poland, the Razem przed siebie (eng. Forward with Dementia) campaign was created. The aim of the study was to evaluate its effectiveness. Methods: To disseminate key campaign messages to the target audiences (people with dementia, carers, health and social care professionals [HSCP] and general public) a website, social and traditional media promotions, webinars and social activities were created. The campaign ran between September 2021 and April 2022. Mixed methods (online survey, reach estimates and interviews) were used to evaluate the campaign. Results: Almost 1,300 people visited the website during the campaign period. Of these, 55 carers and HSCP responded to the online survey. The most read section of the website was Understanding the diagnosis (carers [56% of 25] and HSCP [80% out of 30]). The website was mostly accessed by carers (68%) and HSCP (66.7%) through word-of-mouth recommendations. 80% carers and 90% HSCP found the website very or extremely helpful. Over 90% of carers and HSCP expressed an intention to revisit the website. Based on 31 interviews, campaign effects, change mechanisms and limitations were identified. Campaign events elicited positive emotions among people with dementia, providing them with a feeling of belonging and engagement. Esteeming personal interactions over informational campaign materials, those with dementia felt acknowledged and empowered by the events. Carers also reported positive experiences and increased interest and knowledge, though they expressed disappointment with the lack of respite care, an issue beyond the campaign's scope. HSCP perceived the campaign events positively and identified significant gaps in the dementia care system. Conclusion: Evaluation of the Razem przed siebie campaign revealed successes and limitations. While effectively incorporating anti-stigma campaign recommendations and enhancing social health for individuals with dementia, the campaign clearly showed the pressing need for systemic solutions. Despite positive perception of the campaign, there is a need for a better diagnostic and post-diagnostic support for people with dementia and their carers.

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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.

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AIMS: To understand the perceptions and experiences of family caregivers of adult patients with dysphagia. BACKGROUND: Dysphagia is a common symptom and burdens caregivers greatly. There is a growing body of studies concentrating on caregivers and caregiving experiences. However, no qualitative meta-synthesis has been conducted to explore the perceptions and experiences of family caregivers. DESIGN: A qualitative meta-ethnography. METHODS: A search was conducted for relevant articles in six electronic databases (PubMed, Web of Science, CINAHL, Ovid, Cochrane Library, ProQuest) and two Chinese databases (CNKI, Wanfang Data) from inception to February 2023. The Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) was used to evaluate study quality. The meta-ethnographic method was used to synthesize data from qualitative studies. The study was reported according to EQUATOR guidelines. RESULTS: Eleven studies were included and three themes emerged: (1) emotion and perception, (2) change and challenge (3) adaption and coping. CONCLUSION: This review highlighted the challenges and positive coping experienced by caregivers. Findings directly inform the development and implementation of supportive interventions to reduce caregivers' stress and promote adaptive coping. RELEVANCE TO CLINICAL PRACTICE: Pay attention to the needs of family caregivers of dysphagia. Family caregivers' perceived severity of dysphagia requires assessment. Caregivers need knowledge, support, and guidance to reduce their burden and fulfill their role.

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