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Do the 'Baby Doe' rules discriminate against infants? “小母鹿”规则歧视婴儿吗?
Pub Date : 1990-01-01
G E Jones

This essay consists of a critical examination of the 'Baby Doe' rules with respect to their proscription of references to quality of life considerations as a basis for treatment decisions. It is argued that the rules cannot and should not obviate references to the infant's quality of life. Further, it is argued that there are not sufficient differences between infants and adult incompetent patients to justify the use of quality of life assessments with regard to the latter and not the former.

这篇文章包括对“婴儿Doe”规则的批判性审查,涉及到他们禁止参考生活质量考虑作为治疗决策的基础。有人认为,这些规则不能也不应该避免提及婴儿的生活质量。此外,有人认为婴儿和成年无能患者之间没有足够的差异来证明对后者而不是前者使用生活质量评估是合理的。
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引用次数: 0
Issues in the management of children with spastic cerebral palsy. 痉挛型脑瘫患儿的治疗问题。
Pub Date : 1990-01-01
J G Kohn

Management of the child with spastic cerebral palsy is multidisciplinary and family-oriented, with emphasis on maintaining and increasing function and preventing deformities. Assessment, family education, and use of multiple forms of therapy in conjunction with assistive technology will result in optimum outcome. The pediatrician must know about and refer children to specialists who are knowledgeable about management of cerebral palsy. Education, vocational training and preparation for independent or assisted living situations are integral parts of management, and the pediatrician must be aware of community resources.

痉挛性脑瘫儿童的治疗是多学科和以家庭为导向的,重点是维持和增强功能和预防畸形。评估,家庭教育和使用多种形式的治疗结合辅助技术将导致最佳结果。儿科医生必须了解并将儿童推荐给对脑瘫管理有知识的专家。教育、职业培训和准备独立生活或辅助生活是管理的组成部分,儿科医生必须了解社区资源。
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引用次数: 0
Rehabilitation engineering in pediatrics. 儿科康复工程。
Pub Date : 1990-01-01
M Milner, S Naumann, W Literowich, M Martin, S Ryan, W F Sauter, G F Shein, G Verburg

Applications of science and technology in the (re)habilitation of children and young adults can have dramatic, positive influences on their lives. Prosthetics, orthotics, mobility, postural support and seating, communication and education are responsibilities of the rehabilitation engineer. A holistic approach in meeting individual needs for technology is essential. The concerted rehabilitation engineering programme at The Hugh MacMillan Rehabilitation Centre supports service programmes with relevant research and development work.

将科学和技术应用于儿童和青年人的(再)康复,可对他们的生活产生巨大的积极影响。假肢、矫形器、移动性、姿势支持和座位、沟通和教育是康复工程师的职责。在满足个人对技术的需要方面,必须采取全面的办法。休·麦克米伦康复中心的综合康复工程计划通过相关的研究和发展工作来支持服务计划。
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引用次数: 0
Sleep disturbances in child and adolescent psychiatric disorders. 儿童和青少年精神疾病中的睡眠障碍。
Pub Date : 1990-01-01
R E Dahl, J Puig-Antich

Symptoms of sleep disturbances are commonly associated with child and adolescent psychopathology. There has been considerable interest (both clinical and research) in sleep in relation to major depressive disorder, attention deficit disorder, and Tourette's syndrome. Despite evidence of subjective sleep disturbances, objective physiological studies (for the most part) have not produced clear, specific evidence of sleep disruption which is of clinical benefit at this time. The reasons for this may be due to the technical limitations of measuring sleep which may be unable to reliably detect subtle differences or may be due to maturational factors which protect the sleep of children and mask these findings. The interaction between the regulation of sleep and clinical disorders of affect, arousal, and behavior in children and adolescents appears to be a promising field for future research.

睡眠障碍的症状通常与儿童和青少年的精神病理有关。有相当大的兴趣(临床和研究)睡眠与抑郁症,注意力缺陷障碍和图雷特综合症的关系。尽管有主观睡眠障碍的证据,但客观的生理研究(在大多数情况下)并没有产生明确的、具体的证据表明睡眠障碍目前对临床有益。造成这种情况的原因可能是由于测量睡眠的技术限制,可能无法可靠地检测到细微的差异,也可能是由于保护儿童睡眠的成熟因素掩盖了这些发现。在儿童和青少年中,睡眠调节与临床情感、觉醒和行为障碍之间的相互作用似乎是未来研究的一个有前途的领域。
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引用次数: 0
Ethical aspects in the care of very low birth weight infants. 极低出生体重婴儿护理中的伦理问题。
Pub Date : 1990-01-01
B W Neal

Advances in the neonatal intensive care (NIC) of the very low birth weight infant (VLBW) have given rise to important ethical questions. (1) Does every VLBW infant have the right to NIC? (2) Who should decide whether to treat? (3) How should resources be allocated for NIC? To play their part in answering these questions, paediatricians must become familiar with the principles of ethical reasoning. A distinction can be drawn between a human being and a human person on the basis of the possession of certain qualities, in the absence of which non-treatment may be justified. It will usually not be possible to make this distinction prospectively and hence it is not of much practical assistance as a criterion for decision making. Future disability of th infant can also be advanced as a reason for non-treatment, but it is not possible to know whether avoidance of disability makes it in the best interest of the infant to not be treated, and hence probable future disability is not per se an acceptable criterion for non-treatment. Pain and distress, however, is within the comprehension of decision makers and its avoidance may be an acceptable criterion for non-treatment (although in practice rarely a helpful one). The most useful criterion is one based on the ethics of resource allocation. Resources should be allocated in accordance with the ethical principles of justice and full beneficence. Criteria based on prognosis should be established to decide which VLBW infants should share in the finite resources directed to NIC.

极低出生体重儿(VLBW)的新生儿重症监护(NIC)的进展引起了重要的伦理问题。(1)是否每个VLBW婴儿都有NIC的权利?(2)由谁来决定是否治疗?(3) NIC的资源应该如何分配?为了在回答这些问题中发挥自己的作用,儿科医生必须熟悉伦理推理的原则。可以根据是否拥有某些品质来区分人和人,如果没有这些品质,不给予治疗是合理的。通常不可能预先作出这种区分,因此它作为决策标准没有多大实际帮助。婴儿未来的残疾也可以作为不治疗的理由,但不可能知道避免残疾是否会使婴儿的最佳利益不得到治疗,因此未来可能的残疾本身并不是不治疗的可接受标准。然而,痛苦和苦恼是决策者能够理解的,对它的回避可能是不进行治疗的可接受标准(尽管在实践中很少有帮助)。最有用的标准是基于资源分配伦理的标准。资源的分配应符合公正和充分行善的道德原则。应建立基于预后的标准,以决定哪些VLBW婴儿应该分享用于NIC的有限资源。
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引用次数: 0
Ethical issues in human genetic technology. 人类基因技术中的伦理问题。
Pub Date : 1990-01-01
J R Botkin

The United States and several nations in the developed world have initiated efforts to map and sequence the human genome. The knowledge derived from these efforts will have a profound influence on the practice of medicine. This article reviews the technical developments in the field of human genetics and reviews the ethical issues relevant to the pediatrician in the application of this technology in prenatal screening, presymptomatic screening, carrier screening, and gene therapy. The complexity of these issues warrants caution in the clinical application of these tools and will require a better understanding of human genetics by health professionals and the public.

美国和一些发达国家已经开始绘制人类基因组图谱并对其进行排序。从这些努力中获得的知识将对医学实践产生深远的影响。本文综述了人类遗传学领域的技术发展,并对儿科医生在产前筛查、症状前筛查、携带者筛查和基因治疗中应用这项技术所涉及的伦理问题进行了综述。这些问题的复杂性要求在临床应用这些工具时要谨慎,并且需要卫生专业人员和公众更好地了解人类遗传学。
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引用次数: 0
Ophthalmic neoplasms in infancy and childhood. 婴幼儿眼肿瘤。
Pub Date : 1990-01-01
K W Sykora, R A Weiss, R M Ellsworth, B McCormick

The most common ocular and orbital tumors presenting in infancy, childhood and adolescence are presented and discussed in this review. It has been prepared specifically for the clinical pediatrician and focuses on the clinical recognition of ophthalmic neoplasms, their diagnostic evaluation employing the use of advanced imaging techniques, biopsy when indicated and extent of disease workup. In addition, current treatment modalities are discussed. Ocular tumors addressed include: retinoblastoma, capillary hemangioma, lymphangioma, dermoid and epidermoid cysts, teratoma, glioma, astrocytic hamartoma, neurofibroma, rhabdomyosarcoma and fibrous tumors. Two aggressive and potentially fatal tumors, rhabdomyosarcoma and retinoblastoma, are presented in detail. In addition, the ocular tumors associated with the phakomatoses (von Hippel-Lindau, tuberous sclerosis and neurofibromatosis) are reviewed.

最常见的眼部和眼眶肿瘤出现在婴儿,儿童和青少年提出并讨论在这篇综述。它是专门为临床儿科医生准备的,重点是眼科肿瘤的临床识别,他们的诊断评估采用先进的成像技术,指征时的活检和疾病检查的程度。此外,目前的治疗方式进行了讨论。眼部肿瘤包括:视网膜母细胞瘤、毛细血管瘤、淋巴管瘤、皮样和表皮样囊肿、畸胎瘤、胶质瘤、星形细胞错构瘤、神经纤维瘤、横纹肌肉瘤和纤维性肿瘤。两种侵袭性和潜在致命的肿瘤,横纹肌肉瘤和视网膜母细胞瘤,详细介绍。此外,还对与淋巴瘤相关的眼部肿瘤(von Hippel-Lindau,结节性硬化症和神经纤维瘤病)进行了综述。
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引用次数: 0
Pediatric physical therapy in a rehabilitation setting. 儿童物理治疗在康复设置。
Pub Date : 1990-01-01
H Eigsti, M Aretz, L Shannon

Pediatric rehabilitation is a rapidly growing field. Managing the pediatric patient requires experience and the appreciation of the contributions of health, social and educational professionals: physician, nurse, occupational therapist, learning specialist, recreational therapist, psychologist, social worker, and physical therapist. The responsibility of this multidisciplinary team is to assist the family and the child in attaining the highest realistic physical independence, to prevent musculoskeletal deformity and, therefore, to improve the overall quality of life. Successful rehabilitation will depend on the degree to which each professional considers the whole child when working to alleviate specific handicaps. The long-term rehabilitation of the pediatric patient is a joint team-family responsibility, and for treatment to be translated into daily life, full cooperation and commitment from the family is crucial. The physician is the coordinator of the rehabilitation team and is responsible for the initial assessment and diagnosis from which the team undertakes appropriate management. Ideally, the physician and team members communicate frequently to ensure congruent goals of treatment. The role of the physical therapist in the management of the pediatric rehabilitation patient relates to classifications of diagnosis. The authors present this guide to families and health professionals for using physical therapy resources.

小儿康复是一个快速发展的领域。管理儿科病人需要经验和对健康、社会和教育专业人员的贡献的赞赏:医生、护士、职业治疗师、学习专家、娱乐治疗师、心理学家、社会工作者和物理治疗师。这个多学科团队的职责是帮助家庭和儿童获得最高的实际身体独立性,防止肌肉骨骼畸形,从而提高整体生活质量。成功的康复将取决于每个专业人员在减轻特定残疾时考虑整个孩子的程度。儿科患者的长期康复是一项团队-家庭的共同责任,为了将治疗转化为日常生活,来自家庭的充分合作和承诺至关重要。医生是康复小组的协调员,负责初步评估和诊断,小组据此进行适当的管理。理想情况下,医生和团队成员经常沟通,以确保一致的治疗目标。物理治疗师在小儿康复患者管理中的作用与诊断分类有关。作者提出这个指导家庭和卫生专业人员使用物理治疗资源。
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引用次数: 0
Retinopathy of prematurity. 早产儿视网膜病变。
Pub Date : 1990-01-01
M W Gaynon

Retinopathy of prematurity has reappeared in the neonatal nursery after largely disappearing 35 years ago. The major factor in its reemergence is the progressive improvement in neonatal care, resulting in salvage of infants who formerly would have been lost. Oxygen is now recognized to be but one of many interacting factors in the development of retinopathy of prematurity, with extreme immaturity being the primary factor. Methods of examination, classification and treatment of retinopathy of prematurity are discussed.

早产儿视网膜病变在35年前基本消失后又重新出现在新生儿托儿所。其重新出现的主要因素是新生儿护理的逐步改善,从而挽救了以前可能丢失的婴儿。氧气现在被认为是早产儿视网膜病变发展的许多相互作用因素之一,而极度不成熟是主要因素。本文讨论了早产儿视网膜病变的检查方法、分类及治疗。
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引用次数: 0
Ethical issues encountered in pediatric rehabilitation. 儿科康复中遇到的伦理问题。
Pub Date : 1990-01-01
D J Matthews, R H Meier, W Bartholome

Ethical issues in pediatric rehabilitation should be viewed within the framework of the understanding of the terms of autonomy, nonmaleficence, beneficence and justice. In dealing with the pediatric patient, health professionals are most frequently treating the parents who have the decision-making authority. Normalization which underlies the concept of mainstreaming has become an important issue in pediatric rehabilitation. Normalization is based on the provision of opportunities for choosing, for independent decision making, and for autonomy. The right of the disabled child to have sexual information and to be acknowledged as a sexual individual is essential to the child's autonomy. More children are surviving catastrophic injuries and living with severe disabilities. Birth defects such as myelodysplasias point to the issues of treatment selection involving ethical, moral, philosophical, religious, financial and social values. The phrase 'quality of life' is often applied in these situations and is frequently understood as the 'best interests of the child' which should result in child-centered decisions. In this way, a decision to begin or to withhold treatment can be made in a more ethically considered manner. Resource allocation is of special concern in disabled children since they may consume significant resources in medical and rehabilitation costs spent throughout a lifetime. However, these costs may be justifiable when a disabled child matures into a productive adult. If maximum benefit of limited resources is to be achieved, these children should receive their care from rehabilitation professionals in established centers of rehabilitation expertise. However, we may soon need to accept the responsibility for rationing rehabilitative care as the number of disabled children grows beyond the dollars available to be spent.(ABSTRACT TRUNCATED AT 250 WORDS)

儿童康复中的伦理问题应在理解自主、无害、仁慈和正义等术语的框架内加以看待。在处理儿科病人时,卫生专业人员最常治疗的是拥有决策权的父母。规范化是主流化概念的基础,已成为儿科康复的一个重要问题。规范化的基础是提供选择、独立决策和自主的机会。残疾儿童获得性信息和被承认为性个体的权利对儿童的自主权至关重要。越来越多的儿童从灾难性的伤害中幸存下来,并患有严重的残疾。出生缺陷,如骨髓增生异常,指出了涉及伦理、道德、哲学、宗教、经济和社会价值的治疗选择问题。“生活质量”一词经常用于这些情况,并经常被理解为“儿童的最大利益”,这应该导致以儿童为中心的决定。通过这种方式,开始或停止治疗的决定可以以更合乎道德的方式做出。残疾儿童的资源分配特别令人关切,因为他们一生中可能消耗大量的医疗和康复费用资源。然而,当残疾儿童成长为有生产力的成年人时,这些费用可能是合理的。如果要使有限的资源获得最大的效益,这些儿童应该在已建立的康复专门知识中心接受康复专业人员的照顾。然而,我们可能很快就需要承担起配给康复护理的责任,因为残疾儿童的数量越来越多,超出了可用的资金。(摘要删节250字)
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Pediatrician
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