Caregiver Burden

照顾者的负担
  • 文章类型: Journal Article
    现有的心理健康康复模式优先考虑自我授权和以人为本,以社区为基础的护理,这就需要家庭护理人员合作,以支持社区中的精神分裂症患者。然而,家庭照顾者的角色往往被低估,因此得不到充分的支持。因此,这损害了护理人员的福祉,最终,精神分裂症患者的康复。尽管以照顾者为目标的心理教育可能会提供实际支持,其有效性缺乏确凿的证据。这篇综述旨在评估心理教育对照顾者相关结果的影响(照顾者负担,生活质量和表达的情感)。从开始到2023年9月搜索了八个电子数据库,并通过手工搜索最终参考列表进行了补充。两名审稿人以预定的资格标准独立进行标题和摘要筛选。咨询了第三位审查员以解决任何差异。进行了随机效应荟萃分析,以评估合并效应大小以及亚组和敏感性分析。包括21项研究(总计1639名护理人员),基于此,心理教育有助于在护理者相关结局方面有统计学意义的改善。鉴于巨大的异质性,对心理教育的持续时间和评估量表进行了亚组和敏感性分析.在大多数研究中,质量评估显示不清楚或偏差很大。尽管存在异质性,效应大小的方向一致地表明了心理教育在所有结局中的有效性.这一发现与拉撒路的压力评估和应对理论相一致,其中指出,心理教育提高了护理人员的知识,应对机制和形势评估。我们的发现提供了令人鼓舞的证据来倡导将心理教育纳入医疗保健服务,但是,基于政策的支持对于持续实施是必要的。需要进一步的研究来优化其持续时间和内容,并通过针对客观和主观结果的特定疾病量表评估其长期影响。
    The existing paradigm on recovery in mental health prioritises self-empowerment and person-centred, community-based care, which necessitates family caregivers\' collaboration to support individuals with schizophrenia in the community. However, the role of family caregivers is often under-recognised and hence insufficiently supported. This consequently compromises caregivers\' well-being and, ultimately, the recovery of individuals with schizophrenia. Although caregiver-targeted psychoeducation may offer practical support, its effectiveness lacks conclusive evidence. This review aimed to evaluate the impacts of psychoeducation on caregiver-related outcomes (caregiver burden, quality of life and expressed emotion). Eight electronic databases were searched from inception to September 2023, supplemented by hand searching of end-reference lists. Two reviewers independently conducted title and abstract screening with predetermined eligibility criteria. A third reviewer was consulted to resolve any discrepancies. A random-effects meta-analysis was performed to estimate pooled effect sizes alongside subgroup and sensitivity analyses where appropriate. Twenty-one studies (totalling 1639 caregivers) were included, based on which psychoeducation contributed to a statistically significant improvement in caregiver-related outcomes. Given substantial heterogeneity, subgroup and sensitivity analyses were done for the durations and the evaluative scales for psychoeducation. Quality appraisal revealed unclear or high bias in most studies. Notwithstanding the heterogeneity, the directions of the effect sizes consistently indicated the effectiveness of psychoeducation across all outcomes. This finding aligned with Lazarus\' stress appraisal and coping theory, which states that psychoeducation improves caregivers\' knowledge, coping mechanisms and situation appraisal. Our findings offer encouraging evidence to advocate the integration of psychoeducation into healthcare services, but policy-based support is warranted for sustained implementation. Further research is merited to optimise its duration and content and appraise its long-term impacts through disease-specific scales for objective and subjective outcomes.
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  • 文章类型: Journal Article
    患有1型糖尿病(T1D)的儿童及其父母照顾者经常由于糖尿病管理的日常需求而遭受糖尿病困扰。需要定期筛查糖尿病困扰,以防止代谢控制的恶化和精神健康障碍的发展。这项分析的目的是检查德国版本的儿童糖尿病问题领域量表(PAID-C)的心理测量特性以及父母的照顾者负担(P-PAID-C)。通过在多中心研究中使用语言翻译问卷,从136名7-12岁的儿童(46.7%的女性)和304名父母(Mage=42.9(SD6.1)岁;78%的母亲)收集了数据。进行验证性因素分析和相关分析。结果证实了PAID-C的双因素模型和P-PAID-C的四因素模型,但略有修改。儿童和父母的克朗巴赫αs分别为0.88和0.92。PAID-C和P-PAID-C评分与HbA1c呈小的正相关(rs分别为.220和.139,所有p<.05)和与KIDSCREEN-10指数的强负相关(分别为r=-.643和-.520,所有p<.001)。P-PAID-C评分随着父母中9项患者健康问卷测量的抑郁症状的增加而增加(rs=.534,p<.001)。德国PAID-C和P-PAID-C产生的分数在测量糖尿病负担方面是可靠且有效的。这些德语版本的PAID可用于评估糖尿病特定的痛苦,并为患有高度糖尿病的儿童及其父母设计干预措施。(PsycInfo数据库记录(c)2024APA,保留所有权利)。
    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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  • 文章类型: Journal Article
    背景:护理人员和家庭在1型糖尿病(T1DM)儿科患者的管理和护理中发挥着重要作用。然而,照顾通常与社会和经济负担有关。这项研究评估了T1DM儿科患者沙特护理人员的负担以及潜在的社会和财务因素。
    方法:对在法哈德国王医院(KFH)的糖尿病中心和萨尔曼本·阿卜杜勒阿齐兹国王医疗城(KSAMC)的糖尿病中心就诊的T1DM儿科患者的照顾者和家属进行了横断面研究。沙特阿拉伯王国(KSA)从2024年1月至2024年6月。使用Zarit负担问卷和照顾者护理成本评估问卷进行数据收集。
    结果:该研究调查了376名参与者,主要是女性(N=285,75.8%)和已婚(N=317,84.3%),大多数年龄在18至47岁之间(N=322,85.6%)。T1DM儿科患者的家庭所经历的负担是中等的,平均总负担水平得分为27.8±16.3。对于那些受雇的人,大多数报告照常工作(N=107,81.1%),大多数人每周护理时间少于两小时(N=76,57.6%)。护理对储蓄的财务影响之间存在显着关联,消费,一般经济压力和社会负担(p<0.01)。
    结论:研究结果表明,1型糖尿病儿科患者的照顾者所面临的负担适中,照顾对储蓄的财务影响之间有很强的相关性,消费,以及一般的财务压力和负担水平。研究结果还强调了护理对护理人员所承受的财务压力和生活方式变化的重大影响。
    BACKGROUND: Caregivers and families play an essential role in managing and caring for type 1 diabetes mellitus (T1DM) pediatric patients. However, caregiving is usually associated with social and financial burdens. This study assesses the burden and underlying social and financial factors among Saudi caregivers of pediatric patients with T1DM.
    METHODS: A cross-sectional study was conducted among caregivers and families of T1DM pediatric patients attending the Diabetic Center at King Fahad Hospital (KFH) and the Diabetic Center at King Salman Bin Abdulaziz Medical City (KSAMC) in Al-Madinah City, Kingdom of Saudi Arabia (KSA) from January 2024 to June 2024. The data collection was done using the Zarit Burden Questionnaire and the Caregiver Care Cost Assessment Questionnaire.
    RESULTS: The study surveyed 376 participants, primarily females (N = 285, 75.8%) and married (N = 317, 84.3%), with a majority aged between 18 and 47 years (N = 322, 85.6%). The burden experienced by families with T1DM pediatric patients was moderate, with a mean total burden level score of 27.8 ± 16.3. For those employed, most reported working as usual (N = 107, 81.1%), with most spending less than two hours on care weekly (N = 76, 57.6%). A significant association was found between the financial impact of caregiving on saving, spending, and general financial stress and social burden (p < 0.01).
    CONCLUSIONS: The findings show a moderate burden faced by caretakers of T1DM pediatric patients, with a strong correlation between the financial impact of caregiving on saving, spending, and general financial stress and burden level. The findings also highlight the significant impact of caregiving on the financial stress and lifestyle changes that caregivers endure.
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  • 文章类型: Journal Article
    目的:评估接受药物耐药性癫痫脑半球切开术的儿童和青少年的生活质量和照顾者负担,通过比较术前和术后干预数据。
    方法:回顾性分析在干预前(preOP)接受手术半球切开术的儿科患者及其在手术后6个月(6MPO)和2年(2YPO)的随访。通过儿童癫痫患者的生活质量(QVCE-50)问卷和照顾者负担来评估QOL,通过Zarit负担访谈(ZBI)工具。
    结果:22例患者被纳入研究。在2YPO随访时,有16例患者(72%)被分类为EngelI。QVCE-50量表显示2YPO时总生活质量的改善。关于QVCE-50特定域,在物理领域和认知教育方面有改善,心理领域得分下降,社会/熟悉领域得分稳定.大多数护理人员将他们的负担归类为轻度至中度,没有PO改善。
    结论:半球切开术是一种有效的癫痫控制治疗方法,以及它有助于提高生活质量,特别是在物理领域,尽管儿童的身体和认知的局限性。然而,没有观察到护理人员负担的改善,可能是由于这些病人的慢性病,这可能会因社会问题而恶化。
    OBJECTIVE: To evaluate QOL and caregiver burden of children and teenagers submitted to hemispherotomy for pharmacoresistant epilepsy, by comparing pre and post-surgical intervention data.
    METHODS: Retrospective analysis of pediatric patients submitted to surgical hemispherotomy before intervention (preOP) and their follow-up at 6 months (6 M PO) and 2 years (2Y PO) after surgery. QOL was evaluated through the Quality of Life in Childhood Epilepsy (QVCE-50) questionnaire and caregiver burden, through the Zarit Burden Interview (ZBI) tool.
    RESULTS: Twenty-two patients were included in the study. Sixteen patients (72%) were classified as Engel I at 2Y PO follow-up. QVCE-50 scale showed improvement of total QOL at 2Y PO. In relation to QVCE-50-specific domains, there was an improvement in the physical domain and in the cognitive-education a decrease in psychological and a stabilization in social/familiar domain scores. The majority of caregivers classified their burden as mild to moderate, with no PO improvement.
    CONCLUSIONS: Hemispherotomy represents an effective seizure control treatment, as well as it contributes to improvement of QOL, particularly in the physical domain and in spite of children\'s physical and cognitive limitations. However, no improvement in caregiver burden was observed, probably due to the chronic condition of these patients, which might be worsened by social issues.
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  • 文章类型: Journal Article
    为了缓解美国老年人(≥65岁)的抑郁症状和痴呆的高患病率,我们开发了抑郁症干预措施,照顾者提供的人生回顾(C-PLR),与同步小组虚拟培训相比,在线教授家庭护理人员生活回顾技能,并检查了可行性和交付影响(N=20二元)。
    在横截面中,混合方法二进设计,我们在全国范围内招募了家庭照顾者护理接受者,收集护理接受者抑郁(主要结果)的干预前后措施,生活满意度,照顾者的负担,关怀奖励,和二元关系质量(次要结果),并使用t检验进行比较。我们采用保真度评分来衡量护理人员按照协议提供生活评价的可行性。
    在C-PLR干预后,护理接受者的抑郁症状显着下降(p=0.034),护理者的奖励从前期到后期增加(p=0.019)。护理人员的定性访谈支持了定量结果,即在线培训的护理人员能够在不增加护理人员负担的情况下高度遵守协议(16个中的15.9±0.27个)进行干预。
    这项初步研究表明,C-PLR可以对护理人员和护理接受者的心理健康产生积极影响。这种创新,成本效益高,和容易实施的活动可以被任何二元使用,无论他们是否有任何健康相关的缺陷。
    UNASSIGNED: To alleviate the high prevalence of depressive symptoms and dementia in older Americans (≥65 years), we developed a depression intervention, Caregiver-Provided Life Review (C-PLR), and taught family caregivers life review skills online compared to a synchronous group virtual training, and examined the feasibility and delivery impact (N = 20 dyads).
    UNASSIGNED: In a cross-sectional, mixed-methods dyadic design, we recruited family caregiver-care recipient dyads nationwide, collected the pre- and post-intervention measures on care recipients\' depression (primary outcome), life satisfaction, caregivers\' burden, caregiving rewards, and dyads\' relationship quality (secondary outcomes), and compared them using t-tests. We took fidelity scores to measure caregivers\' feasibility of delivering life reviews adhering to the protocol.
    UNASSIGNED: Care recipients\' depressive symptoms declined significantly following the C-PLR intervention (p = 0.034) and caregivers\' rewards increased from the pre- to post-period (p = 0.019). Caregivers\' qualitative interviews supported the quantitative results that online-trained caregivers\' ability to deliver the intervention with high adherence to protocol (15.9 ± 0.27 out of 16) without increasing caregiver burden.
    UNASSIGNED: This pilot study suggested that the C-PLR could make a positive impact on both caregivers\' and care recipients\' mental health. This innovative, cost-effective, and easily implemented activity can be used by any dyad regardless of whether they have any health-related deficits.
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  • 文章类型: Letter
    这封信讨论了肌萎缩性侧索硬化症(ALS)护理中护理人员负担的紧迫问题,强调正念练习减轻压力和提高护理人员生活质量的潜力。数字平台的整合,比如正念应用程序,提供了一个可访问和有效的解决方案,特别是在资源有限的环境中。通过采取这些策略,我们可以提高护理人员的幸福感和整体患者护理,使其成为全球卫生干预的关键考虑因素。
    This letter discusses the pressing issue of caregiver burden in Amyotrophic Lateral Sclerosis (ALS) care, emphasizing the potential of mindfulness practices to alleviate stress and improve quality of life for caregivers. The integration of digital platforms, such as mindfulness apps, offers an accessible and effective solution, particularly in resource-limited settings. By adopting these strategies, we can enhance caregiver well-being and overall patient care, making it a crucial consideration for global health interventions.
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  • 文章类型: Journal Article
    背景:帕金森病(PD)增加了患者的负担和护理要求。确定PD患者护理人员的负担和相关因素可能有助于确定减轻护理人员负担的方法。这项研究调查了与PD患者护理人员负担相关的因素。
    方法:本研究纳入了85名PD患者和85名护理人员。Zarit负担访谈(ZBI)用于测量照顾者的负担;应对方式量表(WCS)用于应对;改良的Hoehn-Yahr分期(MHYS)用于对患者进行分期。国际帕金森病和运动障碍协会统一帕金森病评定量表(MDS-UPDRS)第1部分和第3部分用于评估非运动和运动问题。使用贝克抑郁量表和贝克焦虑量表(BAI)评估护理人员的抑郁和焦虑水平。用Spearmen相关系数评价变量与ZBI评分的关系,多元线性回归分析用于确定ZBI评分的预测因子。
    结果:发现ZBI评分和BAI评分之间存在显著的正相关,MHYS得分,WCS总分,和分量表:保持自我,在命运中寻求庇护,在超自然力量中寻求庇护。MHYS得分,WCS总分,BAI得分,和MDS-UPDRS-1是ZBI评分的预测因子。
    结论:护理人员的焦虑程度,他们的应对方式,和患者的疾病阶段是重要的照顾者的负担。可以改变应对方式以减轻护理负担。为护理人员开发心理干预措施以改变他们的应对方式可能很重要。
    BACKGROUND: Parkinson\'s disease (PD) increases patient load and requirements of care. Determining the burden on PD patients\' caregivers and associated factors may help to identify methods to reduce caregiver burden. This study investigated the factors associated with caregiver burden among PD patients caregivers.
    METHODS: Eighty-five PD patients and 85 caregivers were included in the study. Zarit Burden Interview (ZBI) was used to measure caregiver burden; the Ways of Coping Scale (WCS) was used for coping; Modified Hoehn-Yahr Staging (MHYS) was used for staging patients. The International Parkinson and Movement Disorder Society Unified Parkinson\'s Disease Rating Scale (MDS-UPDRS) parts 1 and 3 were used to evaluate non-motor and motor problems. Caregivers\' depression and anxiety levels were evaluated with the Beck Depression Inventory and Beck Anxiety Inventory (BAI). Spearmen correlation coefficient was used to evaluate the relationship of variables with the ZBI score, and multiple linear regression analysis was used to determine the predictors of the ZBI score.
    RESULTS: A positive significant relationship was found between the ZBI score and BAI score, MHYS score, WCS total score, and subscales: keeping to self, seeking refuge in fate, and seeking refuge in supernatural forces. MHYS score, WCS total score, BAI score, and MDS-UPDRS-1 were predictors of the ZBI score.
    CONCLUSIONS: The anxiety levels of caregivers, their ways of coping, and the patient\'s stage of the disease are important in caregiver burden. Coping ways can be changed to reduce the care burden. Developing psychological interventions for caregivers to change their coping styles can be important.
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  • 文章类型: Journal Article
    这篇综述旨在巩固和评估探索精神障碍儿童父母照顾者负担的证据。采用了混合研究审查结构和六个电子数据库(PubMed,CINAHL,PsycINFO,Embase,Scopus和ProQuest学位论文和TesesGlobal)从每个数据库的开始日期进行搜索,直到2023年9月。Thomas&Harden的主题分析框架用于数据分析。本综述包括23项研究。基于结果的融合集成方法确定了一个总体主题,标题为“隐藏在着火的墙壁后面,陷入混乱:黑暗和孤独,三个主题命名为“隐形伤疤”:心理因素对照顾者负担的作用,通过对护理负担的社会和经济影响进行导航,以及疾病相关变量和九个子主题的影响。这项审查强调,父母认为医疗保健提供者的支持不足,并且缺乏对孩子的医疗状况的洞察力是造成负担的主要因素。医疗保健专业人员必须与父母照顾者合作,为患有精神障碍的孩子提供可获得的治疗选择,并提供全面的教育资源,以促进对孩子的心理健康状况的深刻理解。除了满足护理人员的信息需求外,提倡建立综合支持系统,其中一项涉及医疗保健专业人员的积极参与,医疗机构,社区资源,社会服务和政策制定者。这种整体方法可以更好地满足护理人员的多方面需求,包括社会心理,情感和财务方面。试验注册:国际前瞻性系统评价注册:PROSPEROID:CRD42022363420。
    This review aims to consolidate and appraise evidence exploring the caregiver burden of parents of children with mental disorders. A mixed-studies review structure was adopted and six electronic databases (PubMed, CINAHL, PsycINFO, Embase, Scopus and ProQuest Dissertations and Theses Global) were searched from each database\'s inception date until September 2023. Thomas & Harden\'s thematic analysis framework was utilised for data analysis. Twenty-three studies were included in this review. The results-based convergent integration method identified an overarching theme titled \'hiding behind the walls on fire, engulfed in chaos: dark and alone\', three main themes named \'Invisible scars\': role of psychological factors on caregiver burden, navigating through social and economic influences on caregiving burden, and influence of illness-related variables and nine subthemes. This review highlighted that the parents perceived insufficient support from healthcare providers and a lack of insight regarding their children\'s medical condition as the primary contributors to the burden experienced. It is imperative for healthcare professionals to collaboratively engage with parental caregivers, offering accessible treatment options for their children with mental disorders and providing comprehensive educational resources to facilitate a profound understanding of their children\'s mental health conditions. In addition to addressing caregivers\' informational needs, the establishment of an integrated support system is advocated, one involving active participation from healthcare professionals, healthcare institutions, community resources, social services and policymakers. This holistic approach could better meet the multifaceted needs of caregivers, encompassing psychosocial, emotional and financial aspects. Trial Registration: International Prospective Register of Systematic Reviews: PROSPERO ID: CRD42022363420.
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  • 文章类型: Journal Article
    1型神经纤维瘤病(NF1)是一种罕见的遗传性疾病,中国缺乏疾病负担的证据。我们的目的是描述经济负担,健康相关生活质量(HRQL),中国NF1患者的照顾者负担。
    我们利用中国罕见病云平台进行了一项在线横断面调查,NF1儿科患者(18岁以下患者)的223名护理人员,226名成人患者。经济负担是使用2021年与NF1相关的直接和间接成本以及工作生产率和活动损害问卷:一般健康V2.0(WPAI-GH)估算的。HRQL措施包括适用于儿科患者的EQ-5D-Y代理版本和PedsQL™4.0通用核心量表(PedsQLGCS)代理版本,和EQ-5D-5L和PedsQL™3.0神经纤维瘤病模块(PedsQLNFM)适用于成人患者。照顾者的负担是由Zarit负担访谈(ZBI)估算的。
    对于儿科患者,2021年的平均直接成本为33,614元(4,879美元),雇佣护理人员的年生产力损失为81天。EQ-5D-Y效用为0.880±0.13,VAS评分为75.38±20.67,其中52.6%的患者报告有“疼痛/不适”问题,而42.9%的患者报告有“焦虑/抑郁”问题。“PedsQLGCS总分为68.47±19.42。ZBI评分显示39.5%的护理人员有中度至重度或重度负担。对于成年患者,2021年的平均直接成本为24531元(3560美元)。根据WPAI-GH的结果,就业患者的缺勤率为8.5%,出勤率为21.6%。EQ-5D-5L效用为0.843±0.17,VAS评分为72.32±23.49,超过一半的患者报告存在“疼痛/不适”和“焦虑/抑郁”维度的问题。PedsQLNFM总分为68.40±15.57。
    中国的儿童和成人NF1患者都有广泛的经济负担和低HRQL,尤其是在心理层面。NF1儿科患者的护理人员经历了相当大的护理人员负担。需要决策者和利益相关者的更多关注和支持,以减轻NF1患者和护理人员的痛苦。
    UNASSIGNED: 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.
    UNASSIGNED: 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).
    UNASSIGNED: 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.
    UNASSIGNED: 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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  • 文章类型: Journal Article
    背景镰状细胞性贫血(SCA)导致各种并发症,需要持续的日常护理并给护理人员带来负担。目的本研究旨在评估SCA儿童家庭照顾者的负担及其相关因素。材料和方法这项分析性横断面研究是在麦地那市进行的,沙特阿拉伯。我们包括SCA儿童的家庭照顾者,他们在萨勒曼国王医疗城的妇幼保健院登记和治疗。数据是从接受SCA治疗的儿童的所有注册档案中收集的。参与者的数据是使用经过验证的阿拉伯语版本的Zarit负担访谈(ZBI)获得的。描述性统计,卡方检验,独立样本t检验,统计分析采用多因素回归分析。总体结果,166名护理人员中有124名参与其中(反应率:74.7%),其中83人(66.9%)为父亲,72人(58.1%)年龄≥40岁,96名(77.4%)拥有沙特国籍,62人(50%)的月收入<5000SAR。平均每日护理时间为5±4小时,30例(24.2%)儿童被诊断患有相关的生理或心理疾病。Zarit负担访谈得分表明,45(36.3%)的护理人员没有负担,而51(41.1%),22(17.7%),6人(4.8%)报告轻微,中度,和沉重的负担,分别。造成负担的因素包括作为母亲,财力低,非沙特国籍,被诊断患有相关生理或心理疾病的儿童,和照顾小时。结论SCA照顾者的负担对于母亲的照顾者来说更高,非沙特人,那些收入较低的人,患有生理或心理疾病的儿童,以及更多的照顾时间。改善受SCA负担影响的家庭的整体福祉涉及制定有针对性的干预措施和全面的支持计划。
    Background Sickle cell anemia (SCA) results in various complications, necessitating continuous daily care and placing burdens on caregivers. Objectives This study aims to assess the burden on family caregivers of children with SCA and its associated factors. Materials and methods This analytical cross-sectional study was conducted in Madinah City, Saudi Arabia. We included family caregivers of children with SCA who were registered and treated at the Maternity and Child Hospital in King Salman Medical City. Data were collected from all registered files of children who received treatment for SCA. Data from participants was obtained using the validated Arabic version of the Zarit Burden Interview (ZBI). Descriptive statistics, chi-square tests, independent sample t-tests, and multivariate regression analysis were used in the statistical analysis. Results Overall, 124 caregivers participated out of 166 (response rate: 74.7%), among which 83 (66.9%) were fathers, 72 (58.1%) were aged ≥40 years, 96 (77.4%) held Saudi nationality, and 62 (50%) had a monthly income of <5000 SAR. The average daily caregiving hours were 5±4 hours, and 30 (24.2%) of children were diagnosed with associated physical or psychological diseases. The Zarit Burden Interview score indicated that 45 (36.3%) of caregivers reported no burden, whereas 51 (41.1%), 22 (17.7%), and 6 (4.8%) reported mild, moderate, and severe burden, respectively. Factors contributing to the burden included being a mother, low financial resources, non-Saudi nationality, children diagnosed with associated physical or psychological diseases, and caregiving hours. Conclusions The burden on SCA caregivers was higher for caregivers who were mothers, non-Saudis, those with lower income, and children with physical or psychological diseases, as well as more caregiving hours. Enhancing the overall well-being of families affected by the SCA burden involves creating targeted interventions and comprehensive support programs.
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