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残疾青少年从儿科服务过渡到成人服务的需求。

The needs of young people with disabilities in transition from paediatric to adult services.

作者信息

Chamberlain M A, Kent R M

机构信息

Academic Unit of Musculoskeletal and Rehabilitation Medicine, University of Leeds, UK.

出版信息

Eura Medicophys. 2005 Jun;41(2):111-23.

PMID:16200026
Abstract

Transition to adulthood requires consolidation of identity, achievement of independence establishment of adult relationships and finding vocation. Those with disabilities and health problems experience difficulty in this through lack of social opportunity. There are 340,000 affected UK individuals of 16-29 years. Most, having survived childhood disability, may experience later deterioration in functional level. Most will require long term monitoring. Health needs include treatment for the complications and progression of their condition, appropriate treatment for everyday, and unrelated diseases, and health maintenance knowledge. Leaving a cohesive paediatric service and entering the uncoordinated adult health services has been described as hurtling into a void''. Therefore, number of health service models have been proposed, including the person-focussed model, a disease-focussed model, a hospital-based model, a team-based outside the health service, a named person, a voluntary organisation and a primary care model. For those with complex disabilities an interdisciplinary team comprising a consultant in Rehabilitation Medicine, (who will facilitate referral to other medical consultants) occupational therapy, speech therapy, psychology and social work input with support from physiotherapy and nursing addresses all these needs. Young Adult Teams can both teach skills, and facilitate health and other service usage. This whole area of work is under-researched. The outcomes for disabling childhood conditions must be investigated, and planning for adulthood must influence the pattern of care in childhood. The most urgent need is to set up effective services for young adults, which will help to ensure that their 50 years of adulthood have quality of life.

摘要

向成年期的过渡需要身份认同的巩固、独立的实现、成人关系的建立以及职业的找寻。残疾人和有健康问题的人由于缺乏社会机会,在这一过程中会遇到困难。在英国,有34万16至29岁的人受到影响。大多数人在童年残疾中幸存下来,但可能会在后期出现功能水平的恶化。大多数人需要长期监测。健康需求包括对其病情并发症和进展的治疗、对日常疾病和无关疾病的适当治疗以及健康维护知识。离开一个有凝聚力的儿科服务体系,进入不协调的成人健康服务体系,被描述为“坠入虚空”。因此,已经提出了多种卫生服务模式,包括以个人为中心的模式、以疾病为中心的模式、基于医院的模式、卫生服务体系之外的团队模式、指定专人模式、志愿组织模式和初级保健模式。对于那些有复杂残疾的人,一个跨学科团队,包括康复医学顾问(将协助转诊给其他医学顾问)、职业治疗师、言语治疗师、心理学家和社会工作者,并在物理治疗和护理的支持下,可以满足所有这些需求。青年成人团队既可以教授技能,也可以促进健康和其他服务的使用。这整个工作领域的研究还不够充分。必须调查儿童致残状况的结果,为成年期所做的规划必须影响儿童期的护理模式。最迫切的需求是为青年成年人建立有效的服务,这将有助于确保他们成年后的50年拥有高质量的生活。

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