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Caregiver and student perspectives on school services for students with traumatic brain injury during the COVID-19 pandemic. 护理人员和学生对 COVID-19 大流行期间为脑外伤学生提供的学校服务的看法。
IF 0.8 Q4 PEDIATRICS Pub Date : 2024-08-30 DOI: 10.3233/PRM-230021
Cara Palusak, Libby Dart, Angela Ciccia, Drew Nagele, Jennifer P Lundine

Purpose: This study aimed to identify unique challenges created by COVID-19 school closures for students with traumatic brain injury (TBI) and their families with relation to special education accommodations, therapy services, social support systems, and mental health complications.

Methods: Forty-one caregivers and students participated in semi-structured, virtual interviews. Families had students in kindergarten through 12th grade who experienced a TBI prior to spring 2020 and were receiving support services at schools in Pennsylvania (US). Researchers used reflexive thematic analysis to identify themes across interviews.

Results: Central themes encompassing the student- and caregiver-reported challenges and advantages of COVID-19 school closures were changes in [1] education delivery, special education services, and accommodations for children with TBI, and [2] social relationships for students with TBI and their caregivers.

Conclusion: COVID-19 and the transition to remote learning significantly impacted special education services and education received by students with TBI. Families in this study discussed both perceived obstacles to and advantages of remote learning in this population. As remote and asynchronous learning are now commonly integrated into the curriculum, research should clarify the facilitators and barriers for successful service provision for students with TBI.

目的:本研究旨在确定 COVID-19 学校关闭给脑外伤(TBI)学生及其家庭带来的特殊挑战,包括特殊教育住宿、治疗服务、社会支持系统和心理健康并发症:41 名照顾者和学生参加了半结构化虚拟访谈。这些家庭中有幼儿园到十二年级的学生,他们在 2020 年春季之前经历过创伤性脑损伤,并在宾夕法尼亚州(美国)的学校接受支持服务。研究人员采用反思性主题分析法确定访谈的主题:COVID-19学校关闭给学生和照顾者带来的挑战和优势的中心主题是:[1]教育提供、特殊教育服务和创伤性脑损伤儿童住宿的变化,以及[2]创伤性脑损伤学生及其照顾者的社会关系:结论:COVID-19 和向远程学习的过渡极大地影响了有创伤性脑损伤的学生所接受的特殊教育服务和教育。本研究中的家庭讨论了远程学习在这些人群中的障碍和优势。随着远程和异步学习被普遍纳入课程,研究应明确为有创伤性脑损伤的学生成功提供服务的促进因素和障碍。
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引用次数: 0
Review of Appetite for Risk-What it is, Who has it and How I survived, by Robert R. Abbott. 罗伯特-R.-阿博特(Robert R. Abbott)所著的《风险胃口--它是什么、谁有这种胃口以及我是如何生存下来的》评论。
IF 0.8 Q4 PEDIATRICS Pub Date : 2024-08-29 DOI: 10.3233/PRM-240045
Rajashree Srinivasan

Appetite for Risk is an autobiographical memoir of the author's life experiences. He vividly explains near-death experiences while maintaining humor, regaling about his escapades. It is thought-provoking to consider if human risky behavior is genetically predetermined.

对风险的渴望》是一部自传体回忆录,讲述了作者的人生经历。他生动地讲述了濒临死亡的经历,同时保持幽默,娓娓道来自己的逃亡经历。这本书发人深省,让我们思考人类的冒险行为是否是基因注定的。
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引用次数: 0
Analysis of a newly developed multidisciplinary program in the Middle East informed by the recently revised spina bifida guidelines. 根据最近修订的脊柱裂指南,分析中东地区新制定的多学科计划。
IF 0.8 Q4 PEDIATRICS Pub Date : 2024-08-23 DOI: 10.3233/PRM-230034
Talia Collier, Jonathan Castillo, Lisa Thornton, Santiago Vallasciani, Heidi Castillo

Purpose: This paper describes the development and characteristics of a multi-disciplinary spina bifida clinic in Qatar considering the recently revised and globally available Guidelines for the Care of People with Spina Bifida (GCPSB).

Methods: A retrospective chart review was performed on individuals in Sidra's multidisciplinary spina bifida clinic database from January 2019 to June 2020. Their electronic health records were reviewed for demographics, as well as neurosurgical, urologic, rehabilitation, and orthopedic interventions.

Results: There were 127 patients in the database; 117 met inclusion criteria for diagnoses of myelomeningocele, meningocele, sacral agenesis/caudal regression, and/or spinal lipoma. Generally, Qatar is following GCPSB recommendations for multidisciplinary care. Consanguineous relationships, difficulties with access to urological and rehabilitation supplies and equipment, school access, and variable timing of neurosurgical closure were areas that demonstrated differences from GCPSB recommendations due to barriers in implementation.

Conclusion: The GCPSB recommendations are applicable in an international setting such as Qatar. Despite a few barriers in implementing some of the recommendations, this new multi-disciplinary spina bifida clinic demonstrates alignment with many of the GCPSB guidelines.

目的:本文介绍了卡塔尔多学科脊柱裂诊所的发展和特点,其中考虑到了最近修订的全球脊柱裂患者护理指南(GCPSB):对 2019 年 1 月至 2020 年 6 月期间 Sidra 多学科脊柱裂诊所数据库中的患者进行了回顾性病历审查。对他们的电子健康记录进行了审查,以了解人口统计数据以及神经外科、泌尿科、康复科和矫形外科的干预情况:数据库中共有 127 名患者,其中 117 名符合髓母细胞瘤、脑膜瘤、骶骨发育不全/尾椎退行性变和/或脊柱脂肪瘤诊断的纳入标准。总体而言,卡塔尔遵循了全球儿童疾病预防控制中心(GCPSB)关于多学科护理的建议。近亲关系、难以获得泌尿科和康复用品及设备、上学难、神经外科手术闭合时间不一等问题,都是由于实施过程中的障碍而与 GCPSB 建议存在差异的领域:结论:GCPSB 建议适用于卡塔尔这样的国际环境。结论:GCPSB 的建议适用于卡塔尔这样的国际环境,尽管在实施某些建议时遇到了一些障碍,但这个新的多学科脊柱裂诊所与 GCPSB 的许多指南保持了一致。
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引用次数: 0
"Virtual reality fixed me": A case report of the use of virtual reality during intensive interdisciplinary pain treatment. "虚拟现实治愈了我":在跨学科疼痛强化治疗中使用虚拟现实技术的案例报告。
IF 0.8 Q4 PEDIATRICS Pub Date : 2024-08-16 DOI: 10.3233/PRM-230059
Christopher D King, Vanessa A Olbrecht, Susan L Crowley, Kimberly L Klages, Emily T Deet, Nicole D Samuel, Kelsey Smith, Sara E Williams, Kendra J Homan

Virtual reality (VR) is an innovative technology with the potential to enhance treatment for children with chronic pain and functional symptoms. Currently, little is known about patients' experiences of VR in the setting of intensive interdisciplinary pain treatment (IIPT). This study aimed to better understand how patients engage with and benefit from VR. This case report focuses on a 12-year-old female with amplified musculoskeletal pain syndrome and comorbid functional neurological disorder receiving treatment in inpatient IIPT. VR was incorporated into physical/occupational and recreational therapy sessions. A semi-structured interview was completed one-month post-discharge. Qualitative analysis revealed three major themes: Process of Change (VR was unique/immersive, reduced pain focus, challenged skepticism, and changed pain perception), Efficacy (VR increased movement, supported transitioning from a wheelchair to walking independently, and increased confidence, excitement, and surprise), and Engagement (VR aided in acknowledging progress, increased camaraderie, was fun, and challenged patient to extend treatment goals made in VR to real life). Therapist observations of the benefits and barriers to using VR in treatment are described. Overall, this report indicates that VR may be a helpful tool to use with existing IIPT interventions to enhance patient engagement in treatment and improve functionaloutcomes.

虚拟现实(VR)是一种创新技术,有可能加强对患有慢性疼痛和功能性症状的儿童的治疗。目前,人们对患者在跨学科疼痛强化治疗(IPT)过程中的 VR 体验知之甚少。本研究旨在更好地了解患者如何使用 VR 并从中受益。本病例报告的重点是一名 12 岁的女性患者,她患有肌肉骨骼疼痛综合征和合并功能性神经紊乱,正在接受住院跨学科疼痛治疗(IIPT)。VR 被纳入了物理/职业和娱乐治疗课程。出院一个月后完成了半结构式访谈。定性分析揭示了三大主题:改变的过程(VR 是独特的/沉浸式的,减少了对疼痛的关注,挑战了怀疑主义,并改变了对疼痛的感知)、功效(VR 增加了运动,支持从轮椅过渡到独立行走,并增加了自信、兴奋和惊喜)和参与(VR 有助于确认进展,增加了友情,很有趣,并挑战病人将在 VR 中制定的治疗目标扩展到现实生活中)。报告还描述了治疗师对在治疗中使用 VR 的好处和障碍的观察。总之,本报告表明,VR 可能是一种有用的工具,可与现有的 IIPT 干预措施一起使用,以提高患者对治疗的参与度并改善功能结果。
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引用次数: 0
Effectiveness of virtual reality training compared to balance-specific training and conventional training on balance and gross motor functions of children with cerebral palsy: A double blinded randomized controlled trial. 虚拟现实训练与特定平衡训练和传统训练相比,对脑瘫儿童平衡和粗大运动功能的效果:双盲随机对照试验。
IF 0.8 Q4 PEDIATRICS Pub Date : 2024-08-16 DOI: 10.3233/PRM-220120
Hussein Ziab, Soha Saleh, Saeed Talebian, Golamreza Olyaei, Rami Mazbouh, Ahmad Rifai Sarraj, Mohamad Reza Hadian

Purpose: The purpose of this study was to compare the clinical efficacy of a virtual reality rehabilitation-based training (VRT) with balance-specific training (BST) and conventional training (CT) on the balance and gross motor functions (GMF) of children with cerebral palsy (CwCP).

Methods: This study was a double blinded, randomized controlled trial. Participants were recruited from different CP rehabilitation centers and clinics and were then randomly allocated using the block randomization method into three groups: (1) group 1 (VRT using a set of Xbox 360 games that triggered balance), (2) group 2 (BST applying a protocol of 13 exercises to enhance balance in different conditions), and (3) control group 3 (CT using traditional physiotherapy techniques). All groups received 18 sessions over six weeks, three sessions per week, each lasting 60 minutes. Participants were assessed at three timepoints (baseline, post-treatment, and follow-up) using the Pediatric Balance Scale (PBS), the Gross Motor Function Measure (GMFM D & E), the Five Times Sit-To-Stand Test, and upper and lower segments' center of mass (COM) displacement (UCOM and LCOM).

Results: A total of 46 CwCP participated in this study. The repeated measures ANOVA revealed a statistically significant difference between groups in the dependent variables, except for the GMFM (D & E) and the PBS (p < 0.05 and partial η2 = 0.473). The post-hoc test showed a statistically significant difference in favor of the VRT group compared to other groups in terms of right UCOM (p < 0.05) with a large effect size of the time*group interaction (partial η2 = 0.87). Moreover, there was a statistically significant effect of time (i.e., baseline to post-treatment and baseline to follow-up) with F (18, 23) = 59.954, p < 0.05, Wilks' lambda = 0.021, partial η2 = 0.979.

Conclusion: The findings revealed that VRT was not superior to BST in the rehabilitation of balance and GMF in CwCP aged four to 12 years. However, when compared to CT, better results were reported. Furthermore, it appears that customized programs lead to greater improvements in balance than commercial programs. Future studies are needed to assess the physiological effects of the three types of rehabilitation interventions using more advanced measurement tools, such as functional magnetic resonance imaging, following VRT protocols.

目的:本研究旨在比较基于虚拟现实的康复训练(VRT)与平衡特异性训练(BST)和常规训练(CT)对脑瘫儿童(CwCP)的平衡和粗大运动功能(GMF)的临床疗效:本研究是一项双盲随机对照试验。参与者从不同的脑瘫康复中心和诊所招募,然后采用分块随机法随机分配到三组:(1) 第一组(VRT,使用一套Xbox 360游戏来触发平衡能力);(2) 第二组(BST,在不同条件下应用13种增强平衡能力的练习方案);(3) 对照组3(CT,使用传统物理治疗技术)。所有组别均在六周内接受了 18 次治疗,每周三次,每次 60 分钟。在三个时间点(基线、治疗后和随访)使用小儿平衡量表(PBS)、粗大运动功能测量(GMFM D 和 E)、五次坐立测试以及上下段质心位移(UCOM 和 LCOM)对参与者进行评估:共有 46 名 CwCP 参与了这项研究。重复测量方差分析显示,除 GMFM(D 和 E)和 PBS(P 结论)外,各组间因变量的差异具有统计学意义:研究结果表明,在康复 4 至 12 岁儿童青少年的平衡能力和 GMF 方面,VRT 并不优于 BST。不过,与 CT 相比,VRT 取得了更好的效果。此外,与商业项目相比,定制项目似乎更能改善平衡能力。未来的研究还需要使用更先进的测量工具(如功能性磁共振成像),按照 VRT 方案评估这三种康复干预的生理效果。
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引用次数: 0
Quantitative ultrasound of submental and masticatory muscles in children with cerebral palsy. 对脑瘫儿童的下颌和咀嚼肌进行定量超声检查。
IF 0.8 Q4 PEDIATRICS Pub Date : 2024-07-02 DOI: 10.3233/PRM-230029
Marloes L J Lagarde, Karen van Hulst, Corrie E Erasmus, Lenie van den Engel-Hoek, Alexander C H Geurts, Nens van Alfen

Purpose: Quantitative muscle ultrasound (QMUS) is potentially valuable as a diagnostic tool in central neurological disorders, as it provides information about changes in muscle architecture. This study aimed to investigate whether ultrasound images of the submental and masticatory muscles in children with spastic cerebral palsy (CP) differ from those obtained in a reference group, and whether observed ultrasound abnormalities differ between subgroups of children with different Eating and Drinking Ability Classification System (EDACS) levels to support its construct validity.

Methods: A prospective cohort study was conducted in 25 children with spastic CP aged 3-18 years. QMUS of selected muscles was performed. Muscle thickness and echogenicity in the CP group were compared to previously collected reference values, and between different EDACS levels within the CP group.

Results: Median echogenicity of all muscles was significantly higher in children with CP than in healthy controls. The temporalis muscle was significantly thinner in the CP group. There were no differences in muscle thickness or echogenicity between EDACS levels.

Conclusion: QMUS is able to detect abnormal architecture of submental and masticatory muscles in children with spastic CP, but the interpretation of abnormalities in relation to the severity of mastication and swallowing problems needs further investigation.

目的:肌肉定量超声(QMUS)可提供肌肉结构变化的相关信息,是中枢神经疾病的一种潜在诊断工具。本研究旨在调查痉挛性脑瘫(CP)儿童的下颌肌和咀嚼肌超声图像是否与参照组的图像不同,以及观察到的超声异常在不同饮食能力分类系统(EDACS)水平的亚组儿童中是否存在差异,以支持其构建有效性:对 25 名 3-18 岁的痉挛性 CP 儿童进行了前瞻性队列研究。对选定的肌肉进行了 QMUS 分析。将 CP 组的肌肉厚度和回声性与之前收集的参考值进行比较,并对 CP 组内不同 EDACS 水平的肌肉厚度和回声性进行比较:结果:CP 患儿所有肌肉的回声中位数均明显高于健康对照组。CP 组儿童的颞肌明显较薄。EDACS水平之间的肌肉厚度和回声没有差异:QMUS能够检测出痉挛性CP患儿下颌肌和咀嚼肌的异常结构,但需要进一步研究异常结构与咀嚼和吞咽问题严重程度的关系。
{"title":"Quantitative ultrasound of submental and masticatory muscles in children with cerebral palsy.","authors":"Marloes L J Lagarde, Karen van Hulst, Corrie E Erasmus, Lenie van den Engel-Hoek, Alexander C H Geurts, Nens van Alfen","doi":"10.3233/PRM-230029","DOIUrl":"https://doi.org/10.3233/PRM-230029","url":null,"abstract":"<p><strong>Purpose: </strong>Quantitative muscle ultrasound (QMUS) is potentially valuable as a diagnostic tool in central neurological disorders, as it provides information about changes in muscle architecture. This study aimed to investigate whether ultrasound images of the submental and masticatory muscles in children with spastic cerebral palsy (CP) differ from those obtained in a reference group, and whether observed ultrasound abnormalities differ between subgroups of children with different Eating and Drinking Ability Classification System (EDACS) levels to support its construct validity.</p><p><strong>Methods: </strong>A prospective cohort study was conducted in 25 children with spastic CP aged 3-18 years. QMUS of selected muscles was performed. Muscle thickness and echogenicity in the CP group were compared to previously collected reference values, and between different EDACS levels within the CP group.</p><p><strong>Results: </strong>Median echogenicity of all muscles was significantly higher in children with CP than in healthy controls. The temporalis muscle was significantly thinner in the CP group. There were no differences in muscle thickness or echogenicity between EDACS levels.</p><p><strong>Conclusion: </strong>QMUS is able to detect abnormal architecture of submental and masticatory muscles in children with spastic CP, but the interpretation of abnormalities in relation to the severity of mastication and swallowing problems needs further investigation.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":null,"pages":null},"PeriodicalIF":0.8,"publicationDate":"2024-07-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141600258","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
The functional secondary effect after an integrated rehabilitative intervention to learn reading and writing in a girl with Rubinstein-Taybi syndrome. 对鲁宾斯坦-泰比综合征女孩进行阅读和写作学习的综合康复干预后的功能性继发效果。
IF 0.8 Q3 Medicine Pub Date : 2024-06-20 DOI: 10.3233/PRM-230051
Donatella Saviola, Katia de Gaetano, Stefania Bruni, Margherita Chiari, Chiara Moschini, Erica Battagliola, Daniela Colla, Matteo Cantoni, Antonio De Tanti

Purpose: A case report of a six-year and five-month-old female admitted with typical symptoms of Rubinstein-Taybi syndrome is presented. Clinical and rehabilitation settings where she acquired her reading, writing, and communication skills are described.

Methods: Because of her cognitive disabilities, a multidisciplinary and long-term intervention (2014-2020) was necessary. Treatment included orthoptic, psychomotor, logopedic, occupational, and neuropsychological care. Her family and school were involved.

Results: Increased attention led to decreased dysfunctional behaviors. Test results are still below average, but there has been significant improvement. Better communication skills resulted from increased phonetic range, improved articulation, lexical-semantic structure, comprehension, and production of sentences. Digital technologies played a significant role in enhancing her communication skills, not just in social interactions but also in school activities. The patient is oriented in time and space with the help of agendas and calendars. She can express her needs and compose concise narratives. As a result of acquiring functional skills, she is better equipped to handle real-life situations, which has led to increased social and family activities.

Conclusion: This case report highlights the importance of personalized rehabilitation programs. Obtaining an early genetic diagnosis is crucial for timely tailored rehabilitation, and any delays in this process can hinder progress.

目的:本病例报告了一名六岁零五个月大的女性,她入院时有鲁宾斯坦-泰比综合征的典型症状。文中描述了她在临床和康复环境中获得阅读、写作和交流技能的过程:由于她的认知障碍,有必要对她进行多学科的长期干预(2014-2020 年)。治疗包括矫形、精神运动、逻辑学、职业和神经心理学护理。她的家人和学校也参与其中:结果:注意力的增加导致功能障碍行为的减少。测试结果仍低于平均水平,但已有明显改善。由于语音范围扩大,发音、词汇-语义结构、理解和造句能力得到改善,因此沟通能力得到提高。数字技术在提高她的沟通能力方面发挥了重要作用,不仅在社会交往中,在学校活动中也是如此。在日程表和日历的帮助下,患者能够确定时间和空间的方向。她可以表达自己的需求,撰写简明扼要的叙述。由于掌握了功能性技能,她能够更好地应对现实生活中的各种情况,从而增加了社交和家庭活动:本病例报告强调了个性化康复计划的重要性。获得早期遗传学诊断对于及时进行量身定制的康复治疗至关重要,而这一过程中的任何延误都会阻碍康复进程。
{"title":"The functional secondary effect after an integrated rehabilitative intervention to learn reading and writing in a girl with Rubinstein-Taybi syndrome.","authors":"Donatella Saviola, Katia de Gaetano, Stefania Bruni, Margherita Chiari, Chiara Moschini, Erica Battagliola, Daniela Colla, Matteo Cantoni, Antonio De Tanti","doi":"10.3233/PRM-230051","DOIUrl":"https://doi.org/10.3233/PRM-230051","url":null,"abstract":"<p><strong>Purpose: </strong>A case report of a six-year and five-month-old female admitted with typical symptoms of Rubinstein-Taybi syndrome is presented. Clinical and rehabilitation settings where she acquired her reading, writing, and communication skills are described.</p><p><strong>Methods: </strong>Because of her cognitive disabilities, a multidisciplinary and long-term intervention (2014-2020) was necessary. Treatment included orthoptic, psychomotor, logopedic, occupational, and neuropsychological care. Her family and school were involved.</p><p><strong>Results: </strong>Increased attention led to decreased dysfunctional behaviors. Test results are still below average, but there has been significant improvement. Better communication skills resulted from increased phonetic range, improved articulation, lexical-semantic structure, comprehension, and production of sentences. Digital technologies played a significant role in enhancing her communication skills, not just in social interactions but also in school activities. The patient is oriented in time and space with the help of agendas and calendars. She can express her needs and compose concise narratives. As a result of acquiring functional skills, she is better equipped to handle real-life situations, which has led to increased social and family activities.</p><p><strong>Conclusion: </strong>This case report highlights the importance of personalized rehabilitation programs. Obtaining an early genetic diagnosis is crucial for timely tailored rehabilitation, and any delays in this process can hinder progress.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":null,"pages":null},"PeriodicalIF":0.8,"publicationDate":"2024-06-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141437024","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Approach to obtaining a swallow study in a five-year-old with a disability and significant procedural anxiety: A case report. 如何为一名患有残疾和严重程序焦虑症的五岁儿童进行吞咽检查?病例报告。
IF 1.9 Q3 Medicine Pub Date : 2024-05-24 DOI: 10.3233/PRM-230063
Tyler Estes, Aaron Gaul, Allison Thornton, Laura Hobart-Porter

Case description: A five-year-old male with spastic quadriplegia cerebral palsy and an expressive communication disorder presented because the family desired liberalization of diet. The diet consisted of pureed solids and no liquids due to deficits identified on bedside swallow evaluation; further dysphagia assessment had not been obtained due to significant procedural anxiety. Comprehensive approaches were taken involving premedication with buspirone, desensitization, distraction, and positive reinforcement. The fluoroscopic swallow study was successfully completed, and the patient's diet was upgraded to include moderately thickened liquids.

Discussion: Procedural anxiety management in special populations is not well-researched. The lack of definitive recommendations regarding these issues increases the difficulty of managing these patients. This case highlights one successful approach to addressing individual needs using widely-available pharmacologic and environmental techniques. Additionally, this case reinforces the need to identify underlying causes for procedural anxiety and involve an interdisciplinary team.

Conclusions: Attempts should be made to identify factors driving procedural anxiety. After discussing with the patient and family, relevant information should be relayed to staff with an open-ended invitation to propose ideas. While not all hospitals have equivalent resources, concerns related to unfamiliarity, underlying anxiety, and locus of control can be addressed with limited resource utilization, as demonstrated in this case.

病例描述一名患有痉挛性四肢瘫痪脑瘫和表达性交流障碍的五岁男性患者因家人希望饮食自由化而前来就诊。由于床边吞咽评估发现其存在缺陷,因此其饮食包括纯固体食物,不含液体食物;由于严重的程序焦虑,没有进行进一步的吞咽困难评估。我们采取了综合措施,包括使用丁螺环酮进行预处理、脱敏、分散注意力和积极强化。透视吞咽检查顺利完成,患者的饮食也得到了改善,增加了适度粘稠的流质食物:讨论:针对特殊人群的手术焦虑管理研究并不充分。对这些问题缺乏明确的建议增加了管理这些患者的难度。本病例强调了一种成功的方法,即利用广泛使用的药物和环境技术来满足个人需求。此外,本病例还强调了确定手术焦虑的根本原因并让跨学科团队参与其中的必要性:结论:应努力找出导致手术焦虑的因素。在与患者和家属讨论后,应将相关信息转达给员工,并邀请他们提出建议。虽然并非所有医院都拥有同等的资源,但正如本病例所示,可以利用有限的资源解决与不熟悉、潜在焦虑和控制感有关的问题。
{"title":"Approach to obtaining a swallow study in a five-year-old with a disability and significant procedural anxiety: A case report.","authors":"Tyler Estes, Aaron Gaul, Allison Thornton, Laura Hobart-Porter","doi":"10.3233/PRM-230063","DOIUrl":"https://doi.org/10.3233/PRM-230063","url":null,"abstract":"<p><strong>Case description: </strong>A five-year-old male with spastic quadriplegia cerebral palsy and an expressive communication disorder presented because the family desired liberalization of diet. The diet consisted of pureed solids and no liquids due to deficits identified on bedside swallow evaluation; further dysphagia assessment had not been obtained due to significant procedural anxiety. Comprehensive approaches were taken involving premedication with buspirone, desensitization, distraction, and positive reinforcement. The fluoroscopic swallow study was successfully completed, and the patient's diet was upgraded to include moderately thickened liquids.</p><p><strong>Discussion: </strong>Procedural anxiety management in special populations is not well-researched. The lack of definitive recommendations regarding these issues increases the difficulty of managing these patients. This case highlights one successful approach to addressing individual needs using widely-available pharmacologic and environmental techniques. Additionally, this case reinforces the need to identify underlying causes for procedural anxiety and involve an interdisciplinary team.</p><p><strong>Conclusions: </strong>Attempts should be made to identify factors driving procedural anxiety. After discussing with the patient and family, relevant information should be relayed to staff with an open-ended invitation to propose ideas. While not all hospitals have equivalent resources, concerns related to unfamiliarity, underlying anxiety, and locus of control can be addressed with limited resource utilization, as demonstrated in this case.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-05-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141093095","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Post-acute day and night non-invasive respiratory intervention use and outcome: A brief report. 急性期后昼夜无创呼吸干预的使用和结果:简要报告。
IF 1.9 Q3 Medicine Pub Date : 2024-04-02 DOI: 10.3233/PRM-220094
J. O’Brien, Helene M Dumas, M. L. Hughes, Brittany Ryan, V. Kharasch
PURPOSEThis study aimed to describe daytime and nighttime use and outcome of non-invasive respiratory intervention (NIRI) for infants born prematurely and for children with medical complexity (CMC) during a post-acute care hospital (PACH) admission.METHODSThirty-eight initial PACH admissions (October 2018 through September 2020) for premature infants (< 1 year; n = 19) and CMC (> 1 year; n = 19) requiring NIRI during the day and/or at night were retrospectively examined. Measures included: 1) daytime and nighttime NIRI use by type (supplemental oxygen therapy via low-flow nasal cannula or positive airway pressure [PAP] via high-flow nasal cannula, continuous positive airway pressure, or biphasic positive airway pressure at admission and discharge) and 2) daytime and nighttime NIRI outcome reduction, increase, or no change from admission to discharge.RESULTSFor the total sample (n = 38), daytime vs nighttime NIRI use was significantly different (p < 0.001). At both admission and discharge, supplemental oxygen was the most common NIRI during the day, while PAP was most common at night. From admission to discharge, seven (18%) infants and children had a positive change (reduced NIRI) during the day, while nine (24%) had a positive change at night. At discharge, 11/38 (29%) infants and children required no daytime NIRI, while 4/38 (11%) required no day or night NIRI.CONCLUSIONNIRI use differs between day and night at PACH admission and discharge for CMC. Reductions in NIRI were achieved during the day and at night from PACH admission to discharge for both infants born prematurely and for children with varied congenital, neurological, or cardiac diagnoses.
目的本研究旨在描述早产儿和内科复杂性儿童(CMC)在入住后护理医院(PACH)期间白天和夜间使用无创呼吸干预(NIRI)的情况和结果。方法回顾性研究了38例首次入住PACH的早产儿(1岁;n = 19)(2018年10月至2020年9月),这些早产儿在白天和/或夜间需要NIRI。衡量标准包括1)按类型划分的白天和夜间 NIRI 使用情况(入院和出院时通过低流量鼻插管补充氧气治疗或通过高流量鼻插管、持续气道正压或双相气道正压进行气道正压 [PAP]);2)从入院到出院,白天和夜间 NIRI 结果减少、增加或无变化。结果对于总样本(n = 38),白天与夜间 NIRI 使用情况存在显著差异(p < 0.001)。在入院和出院时,补充氧气是白天最常用的近红外设备,而呼吸机则是夜间最常用的近红外设备。从入院到出院,7 名婴儿和儿童(18%)在白天出现了积极变化(非近红外指标降低),9 名婴儿和儿童(24%)在夜间出现了积极变化。出院时,11/38(29%)名婴儿和儿童白天不需要近红外照射,4/38(11%)名婴儿和儿童白天或夜间不需要近红外照射。无论是早产儿还是患有各种先天性、神经或心脏疾病的儿童,从入院到出院期间,白天和夜间的 NIRI 均有所减少。
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引用次数: 0
Assessment of mental health and quality of life among children with congenital heart disease. 评估先天性心脏病患儿的心理健康和生活质量。
IF 1.9 Q3 Medicine Pub Date : 2024-03-29 DOI: 10.3233/PRM-220109
Asmaa A El Sehmawy, Shaimaa Younes Abd Elaziz, Asmaa Abdelghany Elsheikh, Fatma A Elsawy, Amal Abd Elsalam Amin, Ahmed Mostafa Omran, Amal Younan Abd El Malek

Purpose: The current study aimed to determine the prevalence of specific psychiatric disorders, identify predictors associated with these disorders, and assess the quality of life (QoL) among children with congenital heart disease.

Methods: This comparative cross-sectional study was conducted in the National Heart Institute outpatient clinics. It included 204 children with structural congenital heart defects (CHD). In addition to assessing QoL with the Pediatric Quality of Life Inventory scale, the Mini-International Neuropsychiatric Interview for Children and Adolescents was utilized to identify psychiatric disorders in the children studied.

Results: Children with CHD were at increased risk for mood and anxiety disorders. They were also more susceptible to obsessive-compulsive disorder than the comprative healthy group. In children with CHD, the cyanotic group demonstrated a greater decrease in QoL than the acyanotic group.

Conclusion: Children with CHD have an increased risk of psychiatric disorders and a lower overall QoL score.

目的:本研究旨在确定先天性心脏病患儿中特定精神障碍的患病率,识别与这些障碍相关的预测因素,并评估其生活质量(QoL):这项横断面比较研究在国家心脏研究所门诊部进行。方法:这项横断面比较研究是在国家心脏研究所门诊进行的,包括204名患有结构性先天性心脏缺陷(CHD)的儿童。除了使用儿科生活质量量表评估儿童的生活质量外,还使用了儿童和青少年迷你国际神经精神访谈来确定研究儿童的精神疾病:结果:患有先天性心脏病的儿童患情绪和焦虑症的风险增加。结果发现:患有先天性心脏病的儿童罹患情绪和焦虑症的风险更高,他们也比正常健康儿童更容易患强迫症。在患有先天性心脏病的儿童中,发绀组的 QoL 下降幅度大于无绀组:结论:患有先天性心脏病的儿童患精神疾病的风险更高,总体 QoL 分数更低。
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引用次数: 0
期刊
Journal of pediatric rehabilitation medicine
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