Hamdani Yani, Mistry Bhavnita, Gibson Barbara E
Social and Behavioural Health Sciences Division, Dalla Lana School of Public Health, University of Toronto , Canada .
Disabil Rehabil. 2015;37(13):1144-51. doi: 10.3109/09638288.2014.956187. Epub 2014 Sep 5.
Youth with progressive conditions are living longer, and there is increased health care focus on assisting them with "transitioning" to adult services and adult life. The purpose of this investigation was to examine key discourses and normative assumptions underpinning transitions best practices and how they are reflected in the experiences of young men with Duchenne muscular dystrophy (DMD).
Using a critical perspective, we qualitatively analyzed influential transitions best practice documents to identify their underpinning discursive assumptions. We compared these to the analysis of qualitative interviews and diary data from a study of 11 young men with DMD.
Transitions best practices are underpinned by discourses of developmental progression. They reproduce notions that associate successful transitions with becoming as independent as possible, approximating normal life trajectories, and planning for future adulthood. The accounts of youth with DMD both reflected and resisted these future-oriented discourses in creative ways that maintained positive personal identities.
Normal developmental progression towards typical adult roles constitutes the generally accepted aims of transitions practices. Such aims may not be appropriate for all youth with disabilities. We suggest that alternative understandings of the life course and approaches to care need to be considered alongside dominant practices. Implications for Rehabilitation Children and youth with progressive conditions, such as DMD, are living longer and there is increased interest in designing programs that will assist them with "transitioning" to adulthood. Transitions best practices reflect dominant social values and assumptions about what constitutes a successful adulthood, embedded in goals such as independent living, self-management and obtaining work. Rehabilitation professionals should be aware of both positive (e.g. feelings of achievement) and negative (e.g. anxiety about the future) consequences of transitions practices that emphasize normal social developmental trajectories and milestones. Discussions with youth should offer multiple possibilities for living a good life in the present and provide support to address negative feelings and the progressive effects of DMD.
患有进行性疾病的青少年寿命越来越长，医疗保健越来越关注帮助他们“过渡”到成人服务和成人生活。本研究的目的是探讨支撑过渡最佳实践的关键话语和规范性假设，以及它们如何在患有杜氏肌营养不良症（DMD）的年轻男性的经历中得到体现。
我们采用批判性视角，对有影响力的过渡最佳实践文件进行定性分析，以确定其潜在的话语假设。我们将这些与对11名患有DMD的年轻男性的定性访谈和日记数据的分析进行了比较。
过渡最佳实践以发展进程的话语为支撑。它们再现了一些观念，即将成功过渡与尽可能独立、接近正常生活轨迹以及为未来成年做规划联系起来。患有DMD的青少年的叙述以创造性的方式既反映又抵制了这些面向未来的话语，同时保持了积极的个人身份。
向典型成人角色的正常发展进程构成了过渡实践普遍接受的目标。这样的目标可能并不适用于所有残疾青年。我们建议，除了主流实践之外，还需要考虑对生命历程的其他理解和护理方法。对康复的启示患有进行性疾病（如DMD）的儿童和青少年寿命越来越长，人们对设计有助于他们“过渡”到成年期的项目的兴趣也在增加。过渡最佳实践反映了关于什么构成成功成年的主导社会价值观和假设，这些价值观和假设体现在诸如独立生活、自我管理和获得工作等目标中。康复专业人员应该意识到强调正常社会发展轨迹和里程碑的过渡实践的积极（如成就感）和消极（如对未来的焦虑）后果。与青少年的讨论应该提供当下过上美好生活的多种可能性，并提供支持以应对负面情绪和DMD的渐进影响。
