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Exploring the Impact of Bereavement During the COVID-19 Pandemic on Children and Young People: A Scoping Review. 探索 COVID-19 大流行期间丧亲之痛对儿童和青少年的影响:范围审查》。
Pub Date : 2024-03-01 Epub Date: 2024-02-08 DOI: 10.1080/24694193.2023.2292503
Joanna Blackburn, Gill Waring, Mary Turner, Karen Currell, Ann-Louise Caress

Experiencing bereavement as a child or young person (CYP) can have long-lasting effects. The societal and environmental burdens of the SARS-CoV-2 pandemic exacerbated the experience of loss and grief for many CYP, who were unable to access their usual the support networks. However, it is still unclear what is currently known and not known about the experiences of CYP bereaved during the SARS-CoV-2 pandemic. This review used the framework of Arksey and O'Malley and included five stages: (1) identifying the research question; (2) identifying relevant studies; (3) study selection; (4) charting the data; (5) collating, summarizing, and reporting the results. The methodological quality of the included studies was also assessed using the Critical Appraisal Skills Programme tool. The PRISMA framework was used for reporting the results. The electronic databases Medline, PsychINFO, CINAHL, and PubMed were searched for relevant articles. A total of three papers meeting the inclusion criteria were included in this review and two main themes identified: (1) support (which included sub-themes; social isolation and the impact on support; support from family and friends; wider support networks); (2) Emotional impact of bereavement during a pandemic. Access to support networks is crucial for CYP to understand and process their emotions relating to their bereavement experience. The pandemic meant that many usual support networks such as family and friends were inaccessible to CYP, who struggled to deal with their experience of grief during this time. Schools are a valuable support mechanism and can help CYP understand their emotions through open discussions about their bereavement. The limited empirical evidence currently available in this area of research demonstrates an important need to further understanding of the long-term impacts of dealing with pandemic-related loss in childhood.

儿童或青少年(CYP)经历丧亲之痛可能会产生长期的影响。SARS-CoV-2 大流行所带来的社会和环境负担加剧了许多儿童和青少年的丧亲和悲痛体验,他们无法获得通常的支持网络。然而,关于在 SARS-CoV-2 大流行期间失去亲人的儿童青少年的经历,目前已知和未知的情况仍不清楚。本综述采用 Arksey 和 O'Malley 的框架,包括五个阶段:(1) 确定研究问题;(2) 确定相关研究;(3) 选择研究;(4) 绘制数据图表;(5) 整理、总结和报告结果。此外,还使用 "批判性评估技能计划 "工具对纳入研究的方法学质量进行了评估。报告结果时使用了 PRISMA 框架。我们在 Medline、PsychINFO、CINAHL 和 PubMed 等电子数据库中搜索了相关文章。本综述共收录了三篇符合纳入标准的论文,并确定了两大主题:(1) 支持(包括次主题:社会隔离及其对支持的影响;来自家庭和朋友的支持;更广泛的支持网络);(2) 大流行期间丧亲的情感影响。进入支持网络对于儿童青少年理解和处理与丧亲经历有关的情绪至关重要。这次大流行意味着许多通常的支持网络(如家人和朋友)对青少 年来说都是遥不可及的,他们在此期间很难处理自己的悲伤体验。学校是一个宝贵的支持机制,可以通过公开讨论他们的丧亲之痛,帮助青少 年了解自己的情绪。目前在这一研究领域的实证证据有限,这表明我们亟需进一步了解处理与大流行病相关的童年丧亲之痛的长期影响。
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引用次数: 0
The Effect of Nursing Students' Liking of Children and Attitudes Toward Clinical Practice on Their Comfort and Worry Levels in the Pediatric Clinic. 护生对儿童的喜爱和临床实践态度对其儿科临床舒适度和担忧度的影响。
Pub Date : 2024-03-01 Epub Date: 2024-02-08 DOI: 10.1080/24694193.2023.2269264
Aslı Akdeniz Kudubeş, Hamide Zengin, Dijle Ayar, I Lknur Bektaş, Murat Bektaş

This research was conducted as a descriptive and cross-sectional study to determine the effects of nursing students' liking of children and attitudes toward clinical practice on their comfort and worry levels in the pediatric clinic. The research was carried out with 270 nursing students who had already taken or were taking the child health and diseases nursing course. Data were collected using a Nursing Student Information Form, the Barnett Liking of Children Scale, the Nursing Students' Attitudes toward Clinical Practices Scale, and the Pediatric Nursing Student Clinical Comfort and Worry Assessment Tool. Mean values, percentage calculations, and linear regression analysis were used for the analysis of the research data. Participants' mean scores were 52.30 ± 6.16 on the Barnett Liking of Children Scale, 103.72 ± 19.35 on the Nursing Students' Attitudes toward Clinical Practices Scale, 15.61 ± 3.74 on the comfort sub-dimension, and 11.63 ± 4.32 on the worry sub-dimension of the Pediatric Nursing Student Clinical Comfort and Worry Assessment Tool. It was determined that the liking of children and attitudes toward clinical practice explained 43.6% of the clinical comfort level of pediatric nursing students in Model 1 and 45.2% of their clinical worry level in Model 2. It was determined that the liking of children and attitudes toward clinical practice significantly affected the comfort and worry levels of nursing students in the pediatric clinic.

本研究是一项描述性和横断面研究,旨在确定护理专业学生对儿童的喜爱和对临床实践的态度对他们在儿科诊所的舒适度和担忧程度的影响。这项研究是对270名已经或正在参加儿童健康与疾病护理课程的护理学生进行的。使用护理学生信息表、Barnett儿童喜爱量表、护理学生对临床实践的态度量表和儿科护理学生临床舒适和担忧评估工具收集数据。平均值、百分比计算和线性回归分析用于研究数据的分析。参与者的平均得分为52.30 ± 6.16儿童巴奈特喜好量表,103.72 ± 19.35护理专业学生对临床实践的态度量表,15.61 ± 舒适性子尺寸3.74,11.63 ± 4.32关于儿科护理学生临床舒适和担忧评估工具的担忧子维度。研究表明,儿童的喜好和对临床实践的态度解释了模式1中43.6%的儿科护理学生的临床舒适水平和模式2中45.2%的临床担忧水平。研究表明,儿童的喜好和对临床实践的态度显著影响了儿科临床护理专业学生的舒适度和担忧度。
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引用次数: 0
Parents' Journeys of Mastery and Knowledge Construction After Their Infant's First Stage of Surgery for Complex Congenital Heart Disease. 婴儿接受复杂先天性心脏病第一阶段手术后,父母的掌握和知识建构之旅。
Pub Date : 2024-03-01 Epub Date: 2024-02-08 DOI: 10.1080/24694193.2023.2293993
Kerry L Gaskin, David Barron, Jo Wray

Background: A growing body of conceptual evidence over the last decade has increased our understanding of parents' experiences of having an infant with complex congenital heart disease. These concepts include parents' feelings of uncertainty, fear, excitement, and mastery. However, little is known about parents' experiences, confidence, and knowledge acquisition during transition from hospital to home with their infant after the first stage of complex cardiac surgery. A theoretical framework to assess, plan and implement child and family centered care would assist children's cardiac nurses responsible for parental education, discharge planning and coordination.

Aim: To explore parents' experiences of the transition from hospital to home with their infant, following the first stage of cardiac surgery.

Design: A prospective mixed methods longitudinal design. Semi-structured interviews were undertaken, including administration of the Maternal Confidence Questionnaire at four timepoints: before discharge following stage one cardiac surgery (T0), 2 weeks' post discharge (T1), 8 weeks' post discharge (T2) and after stage two surgery (T3). Qualitative data were thematically analyzed. Descriptive statistics were used to characterize the sample and non-parametric repeated measures analysis of variance was used to analyze changes over time in maternal confidence scores.

Results: Sixteen parents of 12 infants participated. Four "patterns of transition experience" emerged, the fourth "Mastery", is discussed in this paper. Mastery can be contextualized in terms of the parents' journeys of knowledge construction, gaining confidence and reflection. Learning was dynamic and transformational, but successful learning and acquisition of knowledge was also dependent upon the parents' ability to absorb, integrate and adjust at any given time. Confidence at T0 was significantly lower than at T1 (p = .011), T2 (p = .018) and T3 (p = .012). There were no significant differences between scores at T1, T2 and T3. Liminality, as a concept, described the between and betwixt time that parents experienced as they were preparing for discharge from hospital; excitement to be going home balanced with the fear of being alone and confidence in looking after their fragile infant.

Conclusion: Parents of infants with complex congenital heart disease obtain knowledge, confidence, and mastery dependent upon their transition experience and their personal journey through pre-liminal, liminal, and post-liminal phases of discharge from hospital to home. A conceptual framework "Parenting through Transitions - hospital to home" emerged that could assist in structuring assessment of parents' knowledge and support needs within a coordinated discharge process. Identifying individualized support would promote adaptation and adjustment during transition from the pre

背景:在过去的十年中,越来越多的概念性证据加深了我们对患有复杂先天性心脏病婴儿的父母经历的理解。这些概念包括父母的不确定感、恐惧感、兴奋感和掌握感。然而,我们对复杂心脏手术第一阶段后,父母带着婴儿从医院到家中过渡期间的经历、信心和知识掌握情况知之甚少。一个评估、计划和实施以儿童和家庭为中心的护理的理论框架将有助于负责家长教育、出院计划和协调的儿童心脏科护士:设计:前瞻性混合方法纵向设计。在四个时间点进行了半结构式访谈,包括发放产妇信心问卷:第一阶段心脏手术后出院前(T0)、出院后 2 周(T1)、出院后 8 周(T2)和第二阶段手术后(T3)。对定性数据进行了专题分析。描述性统计用于描述样本的特征,非参数重复测量方差分析用于分析产妇信心评分随时间的变化:结果:12 名婴儿的 16 位家长参与了研究。出现了四种 "过渡体验模式",本文将讨论第四种 "掌握 "模式。掌握 "可以从父母的知识建构、信心获得和反思历程的角度来理解。学习是动态的、转化的,但成功的学习和获取知识也取决于家长在任何时候的吸收、整合和调整能力。T0 阶段的信心明显低于 T1 阶段(p = 0.011)、T2 阶段(p = 0.018)和 T3 阶段(p = 0.012)。T1、T2 和 T3 时的得分没有明显差异。有限性作为一个概念,描述了父母在准备出院时所经历的两难选择:既有回家的兴奋,又有孤独的恐惧,还有照顾脆弱婴儿的信心:患有复杂先天性心脏病的婴儿的父母能否获得知识、信心和驾驭能力,取决于他们的过渡经历,以及他们在从医院到家庭的出院前、边缘和出院后的个人历程。一个名为 "过渡时期的养育--从医院到家庭 "的概念框架应运而生,它有助于在协调的出院过程中对家长的知识和支持需求进行结构化评估。在婴儿接受第一阶段复杂心脏手术后,确定个性化的支持将促进他们在从出院前过渡到出院后边缘阶段期间的适应和调整。
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引用次数: 0
The Effect of Breastfeeding on the Newborn's Comfort and Pain Levels During Heel Blood Collection. 母乳喂养对新生儿足跟采血时舒适度和疼痛程度的影响。
Pub Date : 2024-03-01 Epub Date: 2024-02-08 DOI: 10.1080/24694193.2023.2259991
I Lknur Bektas, Serap Şule Oktay, Pınar Köylü, Handan Ulu, Aslı Akdeniz Kudubeş

This research was planned to determine the effect of breastfeeding on newborns' behavioral pain and comfort scores during heel blood collection. A pretest/posttest experimental-control group design was used. The research was conducted between August 2021 and June 2022. A total of 50 newborns, including 25 in each of the experimental and control groups, were included in the study. An Infant Descriptive Information Form, the COMFORTneo Behaviour Scale, the NIPS-Neonatal Infant Pain Scale, and the LATCH Breastfeeding Diagnosis and Assessment Tool were used in the study. The comfort behaviors and pain scores of infants in the experimental and control groups were evaluated during the heel blood collection process. The comparison of the comfort behaviors (comfort, pain, and distress), differences between pretest-posttest scores on the NIPPS pain score, and crying duration of the newborns in the experimental and control groups indicated a significant difference (p 0.05). The intra-group differences between the mean pretest and posttest scores of both the intervention and control groups were found to be statistically significant (p 0.05). Breastfeeding is an important nursing intervention for reducing procedural pain in newborns. The breastfeeding method reduces pain and distress and increases comfort for newborns during the heel blood collection process.

这项研究旨在确定母乳喂养对新生儿足跟采血过程中行为疼痛和舒适评分的影响。采用前测/后测实验对照组设计。该研究于2021年8月至2022年6月期间进行。共有50名新生儿参与了这项研究,其中实验组和对照组各有25名。研究中使用了婴儿描述性信息表、COMFORTneo行为量表、NIPS新生儿疼痛量表和LATCH母乳喂养诊断和评估工具。在足跟采血过程中评估实验组和对照组婴儿的舒适行为和疼痛评分。舒适行为(舒适、疼痛和痛苦)的比较,NIPPS疼痛评分的测试前-测试后评分之间的差异,实验组和对照组新生儿哭闹时间差异有统计学意义(p0.05)。干预组和对照对照组的测试前和测试后平均得分之间的组内差异具有统计学意义(p>0.05)。母乳喂养是减少新生儿手术疼痛的重要护理干预措施。母乳喂养的方法减少了疼痛和痛苦,并增加了新生儿在足跟采血过程中的舒适度。
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引用次数: 0
Examination of Pediatric Nurses' Knowledge of Anaphylaxis: A Descriptive Study. 儿科护士过敏知识的检查:一项描述性研究。
Pub Date : 2024-03-01 Epub Date: 2024-02-08 DOI: 10.1080/24694193.2023.2274553
Enes Şimşek, Ayşe Ferda Ocakçı

Anaphylaxis is a vital systemic allergic reaction. A rapid diagnosis of anaphylaxis is lifesaving. In most cases, nurses are the first to encounter and intervene in anaphylaxis. Therefore, they have a vital responsibility in such cases. The aim of this study is to create a questionnaire and evaluate the anaphylaxis knowledge levels of pediatric nurses. This is a descriptive type of study. The study took place in Turkey. 80 pediatric nurses who work in pediatric intensive care, neonatal intensive care, child service, and pediatric emergency service participated in the study. The sociodemographic data collection form and the anaphylaxis knowledge level assessment form was used for the study. ANOVA and t-test are used to evaluate the data. The average anaphylaxis knowledge score of the pediatric nurses was found 12.61 ± 2.61, therefore it's moderate. The reliability of the questionnaire was high. Knowledge levels were moderately sufficient in diagnoses and insufficient in treatment and follow-up. Considering how critical anaphylaxis is, the moderately sufficient and insufficient knowledge levels are not substantial and should be increased advancedly. The questionnaire created for this study can be used in future studies. Health institutions should plan training regarding anaphylaxis and recompose anaphylaxis training in general, elaborate treatment and follow-up, and assess pediatric nurses' knowledge periodically.

过敏反应是一种重要的全身性过敏反应。过敏反应的快速诊断是救命的。在大多数情况下,护士是第一个遇到并干预过敏反应的人。因此,在这种情况下,他们负有至关重要的责任。本研究的目的是创建一份问卷,并评估儿科护士的过敏反应知识水平。这是一种描述性的研究。这项研究在土耳其进行。80名从事儿科重症监护、新生儿重症监护、儿童服务和儿科急诊服务的儿科护士参与了这项研究。本研究采用社会人口学数据收集表和过敏反应知识水平评估表。方差分析和t检验用于评估数据。儿科护士的过敏反应知识平均得分为12.61 ± 2.61,因此为中等。问卷的可靠性很高。知识水平在诊断方面适度充足,在治疗和随访方面不足。考虑到过敏反应的严重程度,适度充足和不足的知识水平并不重要,应提前提高。为本研究创建的问卷可用于未来的研究。卫生机构应计划有关过敏反应的培训,并重新安排一般的过敏反应培训,详细说明治疗和随访,并定期评估儿科护士的知识。
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引用次数: 0
Child Killers in Our Midst: Why the Lessons Learned About Safeguarding Shortfalls in the Care of Sick Children Must Not Be Confined to the Trash Can of History. 我们中间的儿童杀手:为什么不能将病童护理中的安全漏洞作为历史的垃圾桶?
Pub Date : 2024-03-01 Epub Date: 2024-02-08 DOI: 10.1080/24694193.2023.2265801
Edward Alan Glasper
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引用次数: 0
Pushed to the Fringe - The Impact of Vaccine Hesitancy on Children and Families. 被推向边缘——疫苗犹豫对儿童和家庭的影响。
Pub Date : 2023-12-01 Epub Date: 2023-06-15 DOI: 10.1080/24694193.2023.2222815
Susan E Smith, Nina Sivertsen, Lauren Lines, Anita De Bellis

Vaccine hesitancy has been described as any delay or refusal of vaccines despite their availability and is increasing in Australia and other middle to high-income countries. The aim of this study is to gain a deep understanding of the experiences and influences on vaccine hesitant children and their families. A qualitative interview approach was undertaken with vaccine hesitant parents and pregnant women (n = 12). Semi-structured interviews were conducted by telephone. Inductive thematic analysis was undertaken on data obtained using the guidelines of Braun and Clarke. Three main themes were identified in this study, including Pushed to the fringe; A culture of Distrust; and Coerced choices. The study revealed that vaccine hesitant parents felt isolated and pushed to the fringe of society. They also expressed dissatisfaction with the Australian "No Jab - No Pay" and "No Jab - No Play" legislation. This contributed to feelings of marginalization. Participants also cited a breakdown in the therapeutic relationships, which impacted their child's health. Additionally, a lack of sufficient information was received to achieve informed consent. These results suggest that there is a need for enhanced education for some health-care professionals, many of whom have reported being confronted by conversations with vaccine hesitant parents.

疫苗犹豫被描述为尽管疫苗可用,但仍会延迟或拒绝接种,在澳大利亚和其他中高收入国家,这种情况正在增加。本研究的目的是深入了解对疫苗犹豫不决的儿童及其家庭的经历和影响。对犹豫接种疫苗的父母和孕妇进行了定性访谈(n = 12) 。半结构化访谈是通过电话进行的。根据Braun和Clarke的指导方针,对获得的数据进行了归纳专题分析。本研究确定了三个主要主题,包括被推向边缘;不信任的文化;和强制选择。研究表明,对疫苗犹豫不决的父母感到孤立,被推向社会边缘。他们还对澳大利亚的“不打不付钱”和“不打就不玩”立法表示不满。这导致了边缘化的感觉。参与者还提到了治疗关系的破裂,这影响了他们孩子的健康。此外,收到的资料不足,无法获得知情同意。这些结果表明,有必要加强对一些医疗保健专业人员的教育,其中许多人报告说,他们遇到了与对疫苗犹豫不决的父母的对话。
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引用次数: 1
Perceptions of Urban Father Support in Early Parenthood: A Critical Incident Analysis. 城市父亲早期育儿支持的认知:一个关键事件分析。
Pub Date : 2023-12-01 Epub Date: 2023-09-12 DOI: 10.1080/24694193.2023.2250448
Debra Beach Copeland, Bonnie Lee Harbaugh, Petrice Sams-Abiodun, Francine de Montigny

Becoming a father is a common transitional event, however men are often not adequately prepared for their fathering role. The United States (U.S.) health care system does little to support fathers' parenting needs during the postnatal and infancy period. Moreover, father's support needs are often perceived as secondary to the mother's needs in the maternal-child system. It is important that fathers' social support needs be investigated in the first year of his newborn's life, especially in diverse populations. Therefore, the purpose of this study was to determine the social support needs of urban, African American fathers during early parenthood. Using the Critical Incident Technique (CIT), a descriptive, qualitative design was used to interview 35 fathers about their social support at 2-12 months after the birth of their baby. Using a semi-structured interview guide, fathers were asked to describe helpful and unhelpful events they experienced since the birth of their baby. Fathers reported 36 helpful events and 32 unhelpful events for an overall total of 68 events. Data was analyzed using House's Social Support Theory and the four social support categories: instrumental, informational, emotional, and appraisal. Using the CIT, main categories and subcategories were developed. The helpful categories included: 1) Helping father with infant care, 2) Providing information on infant care, 3) Receiving HCP assistance, 4) Managing relationships, and 5) Becoming a father. The unhelpful categories included: 1) Receiving unhelpful assistance, 2) Receiving unreliable or unwanted assistance, 3) Offering bad advice, 4) Conflicting relationships, 5) Conflicts with friends, 6) Unsatisfying HCP experience, and 7) Receiving no support from family/organizations. The results of the study validated House's Social Support Theory and served as an excellent framework for exploring social support needs in fathers. More research needs to be conducted on the social support needs of fathers during the first year of their infants' lives, especially with experienced African American fathers and nonresidential fathers, and how health care professionals (HCPs), specifically postnatal and child health nurses, can better support fathers during the infancy period.

成为父亲是一个常见的过渡事件,然而男性往往没有为自己的父亲角色做好充分的准备。美国的医疗保健系统在产后和婴儿期几乎没有为父亲的育儿需求提供支持。此外,在母婴系统中,父亲的支持需求往往被视为母亲的次要需求。在新生儿出生的第一年,特别是在不同的人群中,调查父亲的社会支持需求是很重要的。因此,本研究的目的是确定城市非裔美国父亲在为人父母早期的社会支持需求。采用关键事件技术(CIT),采用描述性、定性设计,对35位父亲进行了访谈,了解他们在2-12岁时的社会支持情况 他们的孩子出生后几个月。使用半结构化的访谈指南,父亲们被要求描述他们自婴儿出生以来经历的有益和无益的事件。在总共68起事件中,父亲们报告了36起有益事件和32起无益事件。数据使用豪斯的社会支持理论和四个社会支持类别进行分析:工具性、信息性、情感性和评价性。使用CIT,开发了主要类别和子类别。有用的类别包括:1)帮助父亲照顾婴儿,2)提供婴儿护理信息,3)接受HCP援助,4)管理关系,以及5)成为父亲。无益的类别包括:1)接受无益的帮助,2)接受不可靠或不需要的帮助,3)提供糟糕的建议,4)关系冲突,5)与朋友发生冲突,6)HCP经验不满意,7)没有得到家人/组织的支持。研究结果验证了豪斯的社会支持理论,并为探索父亲的社会支持需求提供了一个极好的框架。需要对父亲在婴儿出生第一年的社会支持需求进行更多的研究,尤其是对经验丰富的非裔美国人父亲和非居民父亲的社会支持,以及医疗保健专业人员,特别是产后和儿童健康护士,如何在婴儿期更好地支持父亲。
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引用次数: 0
Infant Bottle-Feeding: A Prospective Study of Infant Physiology and Parental Report Metrics. 婴儿奶瓶喂养:婴儿生理学和父母报告指标的前瞻性研究。
Pub Date : 2023-12-01 Epub Date: 2023-07-27 DOI: 10.1080/24694193.2023.2232457
Morgan Hines, Alaina Martens, Emily Zimmerman

The aim of this study was to examine associations between parent reports of bottle-feeding behaviors and infant non-nutritive suck (NNS) on a pacifier as well as oral feeding skills during bottle-feeding. A prospective study was conducted. Full-term infants with no prior diagnosed feeding disorders were recruited at 3-months. Parents reported their infant's bottle-feeding behaviors using the Neonatal Eating Assessment Tool-Bottle-Feeding (NeoEAT-Bottle-Feeding), consisting of five domains: Infant Regulation, Energy and Physiologic Stability, Gastrointestinal Tract Function, Sensory Responsiveness, and Compelling Symptoms of Problematic Feeding. Infant NNS was measured using a custom pacifier, pressure transducer device, which yields the following NNS variables: duration (sec), frequency (Hz), amplitude (cmH20), cycles per burst, cycle amount, and burst amount. The Oral Feeding Skills (OFS) scale was used to measure the initial volume, transfer volume, proficiency, and rate of milk transfer during bottle feeding. Fifty-two infants (58% male) with reported prior bottle experience completed this study. NeoEAT-Bottle-Feeding Total score was significantly positively associated with NNS burst duration and NNS cycles per burst. The NeoEAT-Bottle-Feeding Energy and Physiologic Stability domain was significantly positively correlated with NNS cycles per burst. NeoEAT-Bottle-Feeding Gastrointestinal Tract Function domain score was significantly positively correlated with NNS duration, amplitude, and cycles per burst. There were no significant associations between NeoEAT-Bottle-Feeding domains and the OFS scale. The findings demonstrate that parent reports of problematic feeding at 3 months of age are associated with aspects of infant NNS physiology and not with oral feeding metrics during bottle-feeding. Parent reports of bottle-feeding behaviors, particularly pertaining to gastrointestinal issues, were associated with aspects of infant NNS. These data together will allow for a more nuanced understanding of infant feeding and will be beneficial in determining if infants have a feeding delay.

本研究的目的是检验父母关于奶瓶喂养行为的报告与婴儿在奶嘴上的非营养性吮吸(NNS)以及奶瓶喂养期间的口腔喂养技能之间的关系。进行了一项前瞻性研究。在3个月大时招募没有先前诊断出喂养障碍的足月婴儿。父母使用新生儿饮食评估工具奶瓶喂养(NeoEAT奶瓶喂养)报告婴儿的奶瓶喂养行为,该工具由五个领域组成:婴儿调节、能量和生理稳定性、胃肠道功能、感官反应和问题喂养的强迫症状。使用定制的奶嘴、压力传感器设备测量婴儿NNS,该设备产生以下NNS变量:持续时间(秒)、频率(Hz)、振幅(cmH20)、每次爆发的周期、周期量和爆发量。口腔喂养技能(OFS)量表用于测量奶瓶喂养过程中的初始奶量、转移量、熟练程度和牛奶转移率。52名婴儿(58%为男性)完成了这项研究。NeoEAT奶瓶喂养总分与NNS爆裂持续时间和每次爆裂的NNS周期显著正相关。NeoEAT奶瓶喂养能量和生理稳定性域与每次爆发的NNS周期显著正相关。NeoEAT奶瓶喂养胃肠道功能域评分与NNS持续时间、振幅和每次发作的周期显著正相关。NeoEAT奶瓶喂养领域与OFS量表之间没有显著关联。研究结果表明,父母在3岁时报告喂养有问题 月龄与婴儿NNS生理方面有关,而与奶瓶喂养期间的口腔喂养指标无关。家长关于奶瓶喂养行为的报告,特别是与胃肠道问题有关的报告,与婴儿NNS的各个方面有关。这些数据加在一起将有助于对婴儿喂养有更细致的了解,并有助于确定婴儿是否有喂养延迟。
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引用次数: 0
Transition Readiness Assessment in Adolescents and Young Adults with Neurofibromatosis Type 1 (NF1). 青少年和青年1型神经纤维瘤病(NF1)的转变准备评估。
Pub Date : 2023-09-01 DOI: 10.1080/24694193.2020.1806402
Allison Goetsch Weisman, Tina Haws, Joanna Lee, Andrea M Lewis, Nina Srdanovic, Heather B Radtke

Neurofibromatosis type 1 (NF1) conveys significant disease morbidity and lower quality of life compared to the general population. Research has shown that decreased positive health outcomes are directly correlated with inadequate development of health-related self-management skills among similar patient populations, and among these populations a healthcare transition (HCT) intervention improves provision of care and health outcomes. Thus, HCT intervention may improve care and outcomes in NF1. To design a future informed NF1 HCT intervention, baseline transition readiness must be assessed. A survey distributed by Children's Tumor Foundation (CTF) was developed to assess transition readiness and the impact of NF1 on factors of young adult life. A total of 101 participants aged 14-26 years living in the United States completed the survey with a median [IQR] age of 18 [16, 21]. The majority of participants reported that NF1 had significant or some impact on all factors of young adult life including education, career, relationships, and family planning. The median Transition Readiness Assessment Questionnaire (TRAQ) score in this study (3.50/5.00) was significantly lower than the previously published score of healthy peers (3.93/5.00) (p< .001). Higher TRAQ scores correlated with higher NF1-specific transition knowledge and skills (NF1-TRAQ) (r = 0.632). Participants self-report adequate knowledge of NF1 and comfort in talking to medical providers. They report discomfort with appointment keeping, insurance related tasks, addressing NF1 emergencies, and discussing NF1 with non-medical providers and peers. Further, TRAQ and NF1-TRAQ scores were lower in individuals who reported that their diagnosis of NF1 had some or significant impact on education, career, and relationships. Findings demonstrate that among individuals with NF1 in this study, decreased transition readiness is associated with a negative impact on young adult life. Data from this study supports the need to develop NF1-specific HCT intervention tools, with an effort to improve quality of life and standardize NF1 care.

与一般人群相比,1型神经纤维瘤病(NF1)具有显著的疾病发病率和较低的生活质量。研究表明,在类似的患者群体中,积极健康结果的下降与健康相关自我管理技能的发展不足直接相关,在这些人群中,医疗保健过渡(HCT)干预改善了护理和健康结果的提供。因此,HCT干预可以改善NF1的护理和预后。为了设计未来知情的NF1 HCT干预措施,必须评估基线过渡准备情况。儿童肿瘤基金会(CTF)开展了一项调查,以评估过渡准备程度和NF1对青年生活因素的影响。共有101名年龄在14-26岁、居住在美国的参与者完成了调查,他们的中位年龄[IQR]为18岁[16,21]。大多数参与者报告说,NF1对年轻人生活的所有因素都有显著或一定的影响,包括教育、职业、人际关系和计划生育。本研究的过渡准备评估问卷(TRAQ)得分中位数(3.50/5.00)显著低于健康同龄人(3.93/5.00)(pr = 0.632)。参与者自我报告对NF1有足够的了解,并在与医疗提供者交谈时感到舒适。他们报告了预约、保险相关任务、处理NF1紧急情况以及与非医疗提供者和同行讨论NF1时的不适。此外,报告说他们的NF1诊断对教育、职业和人际关系有一些或重大影响的个体,其TRAQ和NF1-TRAQ得分较低。研究结果表明,在本研究中患有NF1的个体中,转变准备程度的降低与对青年生活的负面影响有关。本研究的数据支持开发NF1特异性HCT干预工具的必要性,以努力改善生活质量和标准化NF1护理。
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引用次数: 7
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Comprehensive child and adolescent nursing
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