Hammel Joy, Magasi Susan, Heinemann Allen, Whiteneck Gale, Bogner Jennifer, Rodriguez Evelyn
University of Illinois at Chicago, Dept. of Occupational Therapy & Disability, Chicago, IL 60612, USA.
Disabil Rehabil. 2008;30(19):1445-60. doi: 10.1080/09638280701625534.
Although participation is an important construct and valued goal, how it is conceptualized, defined and measured varies widely. This qualitative, multi-site study sought to gain an insider perspective from people with disabilities in grounding what participation means, how to characterize it, and the barriers and supports to participation.
Sixty-three people self-identifying with diverse disabilities participated in qualitative focus groups across sites.
Participants conceptualized participation as a cluster of values that included active and meaningful engagement/being a part of, choice and control, access and opportunity/enfranchisement, personal and societal responsibilities, having an impact and supporting others, and social connection, inclusion and membership.
No gold standard for ideal or optimal participation emerged; no one defined set or frequency of activities accounted for 'full' participation. Participants described needing to be free to define and pursue participation on their own terms rather than meeting predetermined societal norms. Participation was viewed as both a right and a responsibility, influenced by and ascribed to the person and to the society. Participation does not occur in a vacuum; the environment dynamically influences participation. Implications of this conceptual framing for assessment, research and systems level change to support participation of people with disabilities are discussed.
尽管参与是一个重要的概念且是有价值的目标，但对其概念化、定义和衡量方式却存在很大差异。这项定性的多地点研究旨在从残疾人的内部视角来探究参与意味着什么、如何对其进行描述以及参与的障碍和支持因素。
63名自我认定为患有各种残疾的人参与了各地的定性焦点小组。
参与者将参与概念化为一组价值观，包括积极且有意义的参与/成为其中一部分、选择与控制、获得机会/被赋予权利、个人和社会责任、产生影响和支持他人，以及社会联系、包容和归属。
并未出现理想或最佳参与的黄金标准；没有一种既定的活动定义或频率能代表“充分”参与。参与者表示需要能够按照自己的方式自由定义和追求参与，而不是符合预先设定的社会规范。参与被视为一种权利和责任，受个人和社会的影响并归因于个人和社会。参与并非孤立发生；环境会动态地影响参与。本文讨论了这种概念框架对评估、研究以及支持残疾人参与的系统层面变革的影响。
