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An evaluation of the impact of a cancer support specialist service on families of children with cancer and the multidisciplinary team in a children's health service in Ireland. 评估癌症支助专家服务对爱尔兰癌症儿童家庭和儿童保健服务的多学科小组的影响。
IF 1.3 4区 医学 Q3 NURSING Pub Date : 2025-01-06 DOI: 10.1177/13674935241312722
Maryanne Murphy, Hugh Fulham-McQuillan, Agnes Higgins, Maria Brenner

The onset of childhood cancer is sudden and unexpected, and the effect on the family unit can be enormous as they embark on a major life transition. Families of children with cancer have a high level of psychosocial needs due to the many challenges they may face during their child's cancer journey. Previous research indicates that the current healthcare system does not always meet these needs. This qualitative descriptive study aimed to explore the impact of a new Cancer Support Specialist Service from the perspective of the families and the multidisciplinary team. Data were collected using semi-structured one-to-one interviews. The impact on the family was increased emotional, practical, informational, and navigational support. The impact on the MDT included freeing up time for the clinical component of their work, decreasing worry that unmet needs for parents were not being addressed, and increasing access to timely flexible support for families. The knowledge advanced by this study can inform future planning of the Cancer Support Specialist Service.

儿童癌症的发作是突然和意想不到的,对家庭单位的影响可能是巨大的,因为他们开始一个重大的生活转变。癌症儿童的家庭有很高的社会心理需求,因为他们在孩子的癌症旅程中可能面临许多挑战。先前的研究表明,目前的医疗保健系统并不总是满足这些需求。本定性描述性研究旨在从家庭和多学科团队的角度探讨新的癌症支持专家服务的影响。数据收集采用半结构化一对一访谈。对家庭的影响是增加了情感、实际、信息和导航支持。对MDT的影响包括为临床工作腾出时间,减少对父母未满足需求未得到解决的担忧,以及增加对家庭的及时灵活支持。这项研究所提供的知识可以为癌症支持专家服务的未来规划提供信息。
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引用次数: 0
Screening pediatric patients to determine need for child life services using the pediatric emotional safety screener. 使用儿童情绪安全筛选器筛选儿科患者以确定儿童生活服务的需要。
IF 1.3 4区 医学 Q3 NURSING Pub Date : 2025-01-06 DOI: 10.1177/13674935241312989
Jennifer H Staab, Suhong Tong, Jennifer S Gerson, Claire E Simonsen

There can be adverse psychosocial outcomes for children who have negative healthcare experiences. Identifying children's risk for experiencing elevated distress early on when entering the healthcare setting would allow targeted, proactive support to help mitigate negative psychological sequelae. The aim of this retrospective study was to evaluate the psychometric properties of the Pediatric Emotional Safety Screener (PESS), designed to screen for psychosocial distress for pediatric patients. A Child Life Department conducted a program evaluation, screening 1643 patients using the PESS in six different service areas including acute inpatient, critical care, emergency department, radiology, surgery, and ambulatory clinics. Certified child life specialists (CCLS) completed a Psychosocial Risk Assessment in Pediatrics (PRAP) and provided their assessment of priority level for child life support for each patient screened. Secondary analysis of the data evaluated the psychometric properties of the PESS. Findings indicated good internal consistency for the PESS. PESS scores significantly correlated with both PRAP scores and CCLS priority level. The PESS is a promising standardized method for health-care providers to screen pediatric patients' risk for experiencing significant distress during their healthcare visit to determine the need for support from a CCLS.

有负面医疗保健经历的儿童可能会产生不利的心理社会后果。在儿童进入医疗机构时,尽早识别出儿童经历痛苦加剧的风险,将有助于提供有针对性的、积极的支持,以帮助减轻消极的心理后遗症。本回顾性研究的目的是评估儿童情绪安全筛查(PESS)的心理测量特性,PESS旨在筛查儿童患者的心理社会困扰。儿童生活科进行了一项项目评估,在六个不同的服务领域筛选了1643名使用PESS的患者,包括急性住院、重症监护、急诊科、放射科、外科和门诊。注册儿童生活专家(CCLS)完成了儿科心理社会风险评估(PRAP),并为每个筛查的患者提供了儿童生活支持的优先级别评估。对数据的二次分析评估了PESS的心理测量特性。结果显示PESS具有良好的内部一致性。PESS得分与PRAP得分和CCLS优先级水平显著相关。PESS是一种很有前途的标准化方法,用于医疗保健提供者筛选儿科患者在医疗保健访问期间经历重大痛苦的风险,以确定是否需要CCLS的支持。
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引用次数: 0
Interventions for improving treatment adherence in young people with inflammatory bowel disease (IBD): A systematic review of behaviour change theory and behaviour change techniques. 改善炎症性肠病(IBD)年轻人治疗依从性的干预措施:行为改变理论和行为改变技术的系统综述
IF 1.3 4区 医学 Q3 NURSING Pub Date : 2024-12-20 DOI: 10.1177/13674935241310893
Cassandra Screti, Lou Atkinson, Rachel Shaw, Rafeeq Muhammed, Gemma Heath

Treatment adherence is important but challenging for young people with inflammatory bowel disease (IBD). Behavioural interventions may support adherence, leading to improved condition management. This review aimed to evaluate interventions designed to improve treatment adherence in young people (aged 13-18) with IBD and identify their use of behaviour change theory and behaviour change techniques (BCTs). Five databases (PsycInfo, Embase, MEDLINE, Web of Science and Scopus) were searched to identify eligible articles published between 1980 and 2022. Articles were critically appraised using the Mixed Methods Appraisal Tool. Findings were synthesised narratively. Seven articles reporting seven oral medication adherence interventions were included. Study designs included five randomised controlled trials and two single-arm clinical trials. Eleven BCTs were identified across seven articles. No article discussed how an intervention was informed by behaviour change theory. Interventions that included additional family members and/or offered tailored adherence support generally had greater effects, as did interventions including education and goal setting components. Reporting of intervention content was poor, limiting our ability to make concrete recommendations regarding intervention effectiveness, use of behaviour change theory and BCTs. Further research is needed to understand how theory-driven behaviour change interventions can improve treatment adherence in young people with IBD.

对于患有炎症性肠病(IBD)的年轻人来说,坚持治疗非常重要,但也具有挑战性。行为干预可以帮助患者坚持治疗,从而改善病情管理。本综述旨在评估旨在提高青少年(13-18 岁)IBD 患者治疗依从性的干预措施,并确定其对行为改变理论和行为改变技术 (BCT) 的使用。我们检索了五个数据库(PsycInfo、Embase、MEDLINE、Web of Science和Scopus),以确定1980年至2022年间发表的符合条件的文章。使用混合方法评估工具对文章进行了严格评估。对研究结果进行了叙述性综合。共纳入了七篇报道七种口服药物依从性干预措施的文章。研究设计包括五项随机对照试验和两项单臂临床试验。七篇文章共确定了 11 项 BCT。没有一篇文章讨论了干预措施是如何借鉴行为改变理论的。包括额外家庭成员和/或提供量身定制的依从性支持的干预通常效果更好,包括教育和目标设定内容的干预也是如此。对干预内容的报告较少,这限制了我们就干预效果、行为改变理论和 BCT 的使用提出具体建议的能力。要想了解理论驱动的行为改变干预如何改善患有 IBD 的年轻人的治疗依从性,还需要进一步的研究。
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引用次数: 0
"When I gave him the insulin injection, I felt the pain in my heart": Experiences of parents of young children with type 1 diabetes in an Arab country. “当我给他注射胰岛素时,我感到内心的痛苦”:阿拉伯国家1型糖尿病幼儿父母的经历。
IF 1.3 4区 医学 Q3 NURSING Pub Date : 2024-12-18 DOI: 10.1177/13674935241309509
Hala Mahmoud Obeidat, Haytham Mohammad Al-Oran, Ghadeer Hjazeen, Doa'a Abdullah Dwairej, Aseel Hussein Obeidat, Ferdous Hasan Omari, Diana Arabiat

Type 1 diabetes mellitus in children is one of the most common chronic health conditions, requiring constant monitoring and care. Living with children who are diagnosed with chronic illness affects multiple aspects of parents' daily lives, including the physical, mental, and social aspects. Due to their child's diabetes, parents may experience many special difficulties with their daily responsibilities. This study describes parental experiences caring for a child with type 1 diabetes. The study was based on semi-structured interviews with 10 parents caring for a child with type 1 diabetes. We analyzed the interviews using Colaizzi's strategy of descriptive phenomenological data analysis in nursing research. Participants were described a profoundly challenging situation, and they were in need of support to help them handle a challenging life situation, especially during the first years of a child's diagnosis. The following themes emerged from the data: adapting to the new reality after diagnosis, keeping up with the child's treatment regimen, psychological, social, and financial burdens, and staying tuned for complications.

儿童1型糖尿病是最常见的慢性健康状况之一,需要持续监测和护理。与被诊断患有慢性疾病的儿童生活在一起会影响父母日常生活的多个方面,包括身体、精神和社会方面。由于孩子患有糖尿病,父母在日常生活中可能会遇到许多特殊的困难。本研究描述了父母照顾1型糖尿病儿童的经历。这项研究是基于对10位照顾1型糖尿病儿童的父母的半结构化访谈。我们使用Colaizzi在护理研究中的描述现象学数据分析策略对访谈进行分析。参与者被描述为一个非常具有挑战性的情况,他们需要支持来帮助他们处理具有挑战性的生活情况,特别是在孩子被诊断的头几年。数据中出现了以下主题:适应诊断后的新现实,跟上儿童的治疗方案,心理、社会和经济负担,以及关注并发症。
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引用次数: 0
Factors associated with transition readiness among adolescents and young adults with spina bifida in South Korea. 韩国青少年和青年脊柱裂患者的过渡准备相关因素
IF 1.3 4区 医学 Q3 NURSING Pub Date : 2024-12-07 DOI: 10.1177/13674935241302438
Eun Kyoung Choi, Yoonhye Ji, Eunyoung Jung, Eunjeong Bae

This study aimed to examine the factors associated with transition readiness based on the healthcare transition model among adolescents and young adults (AYAs) with spina bifida (SB) in the individual (self-management and self-efficacy), family or social support (family function and social support), healthcare system, and environmental (transition environment) domains. Using face-to-face and online surveys, we conducted a cross-sectional study on AYAs with SB in South Korea. The participants were aged 13-25 years. Data were analyzed using descriptive statistics, t test, one-way analysis of variance, Pearson's correlation coefficients, and multiple regression analysis. A total of 110 AYAs with SB participated in this study. Their mean age was 19.85 (SD = 3.65) years. The mean score of transition readiness was 3.89 (SD = 0.70) out of 5. Transition readiness was statistically significantly associated with general (age), clinical (mobility), and individual (self-management) characteristics and family or social support (social support) and the healthcare system. These results suggest that it is necessary to develop tailored transition care programs that consider factors associated with transition readiness for AYAs with SB. The findings of this study increase our understanding of the transition readiness of AYAs with SB, which can help in the development of effective transition strategies.

本研究旨在探讨青少年和青壮年脊柱裂(SB)患者在个人(自我管理和自我效能)、家庭或社会支持(家庭功能和社会支持)、医疗保健系统和环境(过渡环境)领域的转变准备相关因素。通过面对面和在线调查,我们对韩国SB的aya进行了横断面研究。参与者年龄在13-25岁之间。数据分析采用描述性统计、t检验、单因素方差分析、Pearson相关系数分析和多元回归分析。共有110例SB患者参与了本研究。平均年龄19.85岁(SD = 3.65)。转换准备的平均得分为3.89 (SD = 0.70)。转变准备与一般(年龄)、临床(流动性)和个人(自我管理)特征、家庭或社会支持(社会支持)和医疗保健系统有统计学显著相关。这些结果表明,有必要制定有针对性的过渡护理方案,考虑与SB患者过渡准备相关的因素。本研究的发现增加了我们对SB患者过渡准备的理解,这有助于制定有效的过渡策略。
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引用次数: 0
Pediatric primary care clinicians' views on needs and challenges in caring for infants with intrauterine opioid exposure and their families. 儿科初级保健临床医生对照顾宫内阿片类药物暴露婴儿及其家庭的需求和挑战的看法。
IF 1.3 4区 医学 Q3 NURSING Pub Date : 2024-12-01 Epub Date: 2023-04-12 DOI: 10.1177/13674935231168676
Jessica F Rohde, Kimberly Canter, Madison Houff, Barry Bodt, Lee M Pachter, Matthew D Di Guglielmo, Neera Goyal

Opioid use disorder (OUD) during pregnancy has risen in the U.S. over the past two decades, resulting in a growing number of children with intrauterine opioid exposure (IOE). Limited research exists supporting best practices to optimize primary care for these children and their families, particularly mothers with OUD. Using a modified Delphi method, we surveyed pediatric primary care clinicians from a single children's health care system regarding their experiences in caring for this population. In Phase 1, open-ended survey questions inquired about needs and challenges facing these infants, their families, and clinicians and resources within primary care. After thematic analysis, the most frequent responses were presented as a Phase 2 survey for clinicians to select their top five. Percentages for the most commonly selected top five themes were tabulated. Survey response rates were 58/139 (42%) for Phase 1 and 45/137 (33%) for Phase 2. For infants with IOE and their families, respondents identified parenting knowledge and family issues related to maternal OUD as top challenges, with limited resources to address them in primary care. Clinicians identified time constraints and follow-up issues as top challenges. Future intervention in pediatric primary care could include addressing parenting education, resource gaps, and best practice recommendations in caring for children with IOE.

在过去的二十年里,美国怀孕期间的阿片类药物使用障碍(OUD)有所上升,导致越来越多的儿童宫内阿片类药物暴露(IOE)。现有的有限研究支持优化这些儿童及其家庭,特别是患有OUD的母亲的初级保健的最佳做法。使用改进的德尔菲法,我们调查了来自单一儿童卫生保健系统的儿科初级保健临床医生在照顾这一人群方面的经验。在第一阶段,开放式调查问题询问了这些婴儿、他们的家庭、临床医生和初级保健资源面临的需求和挑战。在专题分析之后,最常见的反应被呈现为临床医生的第二阶段调查,以选择他们的前五名。最常被选中的前五个主题的百分比被制成表格。第一阶段的调查应答率为58/139(42%),第二阶段为45/137(33%)。对于患有IOE的婴儿及其家庭,受访者认为与母亲OUD相关的育儿知识和家庭问题是最大的挑战,在初级保健中解决这些问题的资源有限。临床医生认为时间限制和随访问题是最大的挑战。未来对儿童初级保健的干预可能包括解决父母教育、资源差距和照顾IOE儿童的最佳实践建议。
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引用次数: 0
Changing bodies: A scoping review and thematic analysis of family experience during serious childhood illness. 变化的身体:儿童严重疾病期间家庭经历的范围审查和专题分析。
IF 1.3 4区 医学 Q3 NURSING Pub Date : 2024-12-01 Epub Date: 2023-04-07 DOI: 10.1177/13674935231168683
Emma Maynard, Megan Bennett

This scoping review has investigated experiences of children and parents encountering in-patient treatment for serious childhood illness, including current or potential use of technology as a support mechanism. The research questions were 1. What do children experience during illness and treatment? 2. What do parents experience when their child is seriously ill in hospital? 3. What tech and non-tech interventions support children's experience of in-patient care? The research team identified n = 22 relevant studies for review through JSTOR, Web of Science, SCOPUS and Science Direct. A thematic analysis of reviewed studies identified three key themes reflecting our research questions: Children in hospital, Parents and their children, and Information and technology. Our findings reflect that information giving, kindness and play are central in hospital experiences. Parent and child needs in hospital are interwoven and under researched. Children reveal themselves as active producers of pseudo-safe spaces who continue to prioritise normal child and adolescent experiences during in-patient care.

这项范围审查调查了儿童和父母因严重儿童疾病住院治疗的经历,包括目前或潜在使用技术作为支持机制。研究问题是1。儿童在疾病和治疗期间经历了什么?2. 当孩子病重住院时,父母的感受是什么?3. 哪些技术和非技术干预措施支持儿童的住院护理体验?课题组通过JSTOR、Web of Science、SCOPUS和Science Direct筛选了n = 22篇相关研究。对审查研究的专题分析确定了反映我们研究问题的三个关键主题:住院儿童、父母及其子女、信息和技术。我们的研究结果表明,提供信息、友善和玩耍是医院体验的核心。医院中父母和孩子的需求是相互交织的,缺乏研究。儿童表现出自己是伪安全空间的积极制造者,他们在住院治疗期间继续优先考虑正常的儿童和青少年体验。
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引用次数: 0
Relationships between parenting and illness factors and child behaviour difficulties in children with asthma and/or eczema. 哮喘和/或湿疹患儿的父母教育与疾病因素和儿童行为困难之间的关系。
IF 1.3 4区 医学 Q3 NURSING Pub Date : 2024-12-01 Epub Date: 2023-04-12 DOI: 10.1177/13674935231155964
Alina Morawska, Evren Etel, Amy E Mitchell

Chronic health conditions such as asthma and eczema are common and are associated with significant psychosocial sequelae for children and their families. A number of parenting variables have been implicated in child health outcomes; however, there are gaps in understanding of the relationships between parenting and child adjustment in the context of chronic illness. This study examined the role that modifiable parenting factors including parenting style, self-efficacy, and adjustment play in explaining general and illness-related child behaviour and emotional problems. Parents (N = 107) of children diagnosed with asthma only (n = 22), eczema only (n = 59), or both conditions (n = 26) completed a range of parenting and child adjustment measures. The majority of the modifiable parenting factors (parents' self-efficacy with managing their child's internalising, asthma-related, and eczema-related behaviours; parent adjustment; and use of ineffective parenting strategies) made significant contributions to explaining variance child behaviour. Parenting variables consistently explained greater proportions of variance in general and illness-related child behaviour difficulties compared to demographic and illness factors and represent important intervention targets.

哮喘和湿疹等慢性健康状况很常见,并与儿童及其家庭的严重社会心理后遗症有关。许多养育变量与儿童健康结果有关;然而,对慢性疾病背景下父母教养与儿童适应之间关系的理解存在差距。本研究考察了可改变的养育因素,包括养育方式、自我效能和适应在解释一般和疾病相关的儿童行为和情绪问题中的作用。仅诊断为哮喘(N = 22)、仅诊断为湿疹(N = 59)或两者兼有(N = 26)的儿童的父母(N = 107)完成了一系列育儿和儿童适应措施。大多数可改变的养育因素(父母在管理孩子内化、哮喘相关和湿疹相关行为方面的自我效能感;父母调整;以及使用无效的养育策略)对解释儿童行为的差异做出了重大贡献。与人口统计和疾病因素相比,养育变量始终解释了一般和与疾病有关的儿童行为困难的更大比例的差异,并代表了重要的干预目标。
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引用次数: 0
Primary healthcare professionals' role in monitoring infant growth: A scoping review. 初级保健专业人员在监测婴儿生长中的作用:范围审查。
IF 1.3 4区 医学 Q3 NURSING Pub Date : 2024-12-01 Epub Date: 2023-03-24 DOI: 10.1177/13674935231165897
Chris Rossiter, Heilok Cheng, Elizabeth Denney-Wilson

Excessive weight gain in infancy is an established risk for childhood obesity. Primary healthcare professionals have regular contact with infants and are well placed to monitor their growth. This review explores primary healthcare professionals' practice in monitoring growth for infants from birth to 2 years, addressing assessment methods, practitioner confidence and interventions for unhealthy weight gain. Reviewers searched four databases for studies of primary healthcare professionals working in high-income countries that reported on practice monitoring infant growth. Thirty-six eligible studies documented health professionals' practice with infants. While most clinicians regularly weighed and measured infants, some did not record measurements comprehensively. Growth monitoring occurred regularly during well-child visits but was less common during unscheduled visits. Some participants were less proficient at interpreting growth trajectories or lacked confidence in detecting excessive weight gain and in communicating concerns to parents. Few interventions addressed unhealthy growth among infants. Primary healthcare professionals require support to monitor growth trajectories effectively, to communicate appropriately with parents and to engage them in developing healthy behaviours early. Strategies are also required to monitor infants not regularly attending primary health care.

婴儿时期体重过度增加是儿童肥胖的一个既定风险。初级卫生保健专业人员经常与婴儿接触,并有良好的条件来监测他们的成长。本综述探讨了初级卫生保健专业人员在监测婴儿从出生到2岁的生长方面的做法,解决了评估方法、医生信心和不健康体重增加的干预措施。审稿人检索了四个数据库,寻找在高收入国家工作的初级卫生保健专业人员关于监测婴儿生长实践的研究报告。36项符合条件的研究记录了卫生专业人员对婴儿的做法。虽然大多数临床医生定期为婴儿称重和测量,但有些医生没有全面记录测量结果。在健康儿童访视期间定期进行生长监测,但在计划外访视期间不太常见。一些参与者在解释生长轨迹方面不太精通,或者在检测体重过度增加和与父母沟通担忧方面缺乏信心。很少有干预措施涉及婴儿的不健康生长。初级保健专业人员需要得到支持,以便有效地监测成长轨迹,与父母进行适当沟通,并使他们尽早养成健康的行为。还需要制定战略,监测不经常参加初级保健的婴儿。
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引用次数: 0
Preventing malnutrition within the first 1000 days of life in under-resourced communities: An integrative literature review. 在资源不足的社区预防生命最初1000天内的营养不良:综合文献综述。
IF 1.3 4区 医学 Q3 NURSING Pub Date : 2024-12-01 Epub Date: 2023-04-03 DOI: 10.1177/13674935231166427
Marian Joyce Nyarko, Dalena Rm van Rooyen, Wilma Ten Ham-Baloyi

This integrative review aimed to summarise existing best evidence practice for preventing malnutrition within the First 1000 Days of Life in under-resourced communities. BioMed Central, EBSCOHOST (Academic Search Complete, CINAHL and MEDLINE), Cochrane Library, JSTOR, Science Direct and Scopus were searched as well as Google Scholar and relevant websites for grey literature. Most recent versions of strategies, guidelines, interventions and policies; published in English, focussing on preventing malnutrition in pregnant women and in children less than 2 years old in under-resourced communities, from January 2015 to November 2021 were searched for. Initial searches yielded 119 citations of which 19 studies met inclusion criteria. Johns Hopkins Nursing Evidenced-Based Practice Evidence Rating Scales for appraising research evidence and non-research evidence were used. Extracted data were synthesised using thematic data analysis. Five themes were derived from extracted data: 1. Improving social determinants of health using a multisector approach; 2. Enhancing infant and toddler feeding; 3. Managing healthy nutrition and lifestyle choices in pregnancy; 4. Improving personal and environmental health practices; and 5. Reducing low-birthweight incidence. Further exploration regarding preventing malnutrition in the First 1000 Days in under-resourced communities is required using high-quality studies. Systematic review registration number: H18-HEA-NUR-001 (Nelson Mandela University).

本综合综述旨在总结资源不足社区在生命最初1000天内预防营养不良的现有最佳证据实践。检索BioMed Central、EBSCOHOST (Academic Search Complete、CINAHL和MEDLINE)、Cochrane Library、JSTOR、Science Direct和Scopus以及谷歌Scholar和相关网站查找灰色文献。最新版本的战略、指导方针、干预措施和政策;检索了2015年1月至2021年11月期间发表的英文出版物,重点是预防资源不足社区孕妇和2岁以下儿童的营养不良。初步检索得到119条引用,其中19项研究符合纳入标准。使用约翰霍普金斯护理循证实践证据评定量表评价研究证据和非研究证据。利用专题数据分析对提取的数据进行综合。从提取的数据中得出五个主题:1。采用多部门办法改善健康的社会决定因素;2. 加强婴幼儿喂养;3. 管理孕期健康的营养和生活方式选择;4. 改善个人和环境卫生做法;和5。减少低出生体重发生率。需要利用高质量的研究,进一步探索如何在资源不足的社区预防头1000天营养不良。系统评价注册号:H18-HEA-NUR-001(纳尔逊曼德拉大学)。
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引用次数: 0
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