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发育障碍成人:医疗照护的综合方法。

Adults with Developmental Disabilities: A Comprehensive Approach to Medical Care.

机构信息

University of California, San Francisco, CA, USA.

出版信息

Am Fam Physician. 2018 May 15;97(10):649-656.

Abstract

Developmental disabilities are attributable to a cognitive impairment, physical impairment, or both. They manifest during the developmental period from birth to early adulthood, and are likely to continue indefinitely. The life expectancy of most persons with developmental disabilities now approaches that of the general population. According to the neurodiversity model of care, developmental disability is accepted as a valued part of human neurologic diversity. The social model focuses on improving participation in society with accommodations such as adaptive equipment or improvements to the social and physical environment. The goal of health care for patients with developmental disabilities is to improve their well-being, function, and participation in family and community. Physicians should communicate directly with their patients, even those who have communication or cognitive differences. Communication may include speech, sign language, writing, letter boards, voice output devices, pictures, facial expressions, gestures, vocalizations, and behavior. Supported decision making is a paradigm, support practice, and emerging legal structure that focuses on assisting patients with communicating their wants and needs as an alternative to guardianship or power of attorney. When establishing care, it is critical to get a detailed history of baseline traits and characteristics in the areas of cognition and communication; neuromuscular function; sensory function such as vision, hearing, and sensory processing; seizure threshold; mental health; and behavior. In general, guidelines for age-appropriate health maintenance in the general population should be followed unless the risk outweighs the benefit for an individual patient. With accurate diagnosis, psychiatric conditions can be treated effectively with the same medical, behavioral, and therapeutic modalities used in the general population. Just like any patient, those with developmental disabilities should have access to a full range of life-sustaining, curative, and end-of-life services.

摘要

发育障碍可归因于认知障碍、身体障碍或两者兼有。它们在从出生到成年早期的发育期间表现出来,并可能无限期持续。现在,大多数发育障碍患者的预期寿命接近一般人群。根据神经多样性护理模式,发育障碍被视为人类神经多样性的一个有价值的组成部分。社会模式侧重于通过适应性设备或改善社会和物理环境等方式来提高参与社会的能力。发育障碍患者的医疗保健目标是改善他们的幸福感、功能以及在家庭和社区中的参与度。医生应该直接与他们的患者沟通,即使他们有沟通或认知方面的差异。沟通方式可能包括言语、手语、书写、字母板、语音输出设备、图片、面部表情、手势、发声和行为。支持决策是一种范式、支持实践和新兴的法律结构,其重点是协助患者传达他们的需求和愿望,以替代监护或授权书。在建立护理时,必须详细了解认知和沟通领域、神经肌肉功能、视觉、听力和感觉处理等感觉功能、癫痫发作阈值、心理健康和行为等方面的基线特征和特点。一般来说,除非对个别患者的风险超过收益,否则应遵循适用于一般人群的年龄适当的健康维护指南。通过准确的诊断,可以使用在一般人群中使用的相同的医疗、行为和治疗方式有效地治疗精神疾病。就像任何患者一样,那些有发育障碍的人应该能够获得全面的维持生命、治愈和临终服务。

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