title: Participation: the insider's perspective.
abstract: The insider-outsider distinction is discussed in the context of people with disabilities. Insiders to disability are likely to have different subjective responses to life situations than do those who experience disability as onlookers. The importance of including the insider's perspective is discussed with respect to assessing participation in terms of setting goals, evaluating programs, setting research agendas, and conducting needs assessments. In terms of incorporating the insider's subjective response to participation into assessment, it is argued that both importance and salience are required to reflect the person's values and goals fully. A review of a sample of currently used assessment approaches is provided with a focus on how each instrument either incorporates or fails to incorporate the insider's perspective on participation. A distinction is made between instruments that tap into the perspective of a specific person at the point of assessment versus those that substitute a perspective based on discussions by groups of insiders, such as emerges from focus groups.
authors.affiliation: Department of Community Medicine and Prevention, Mount Sinai School of Medicine, New York, NY, USA. margaretbrow@gmail.com
authors.forename: Margaret
authors.initials: M
authors.lastname: Brown
mesh_terms: D006801:Humans; D010358:Patient Participation / Q000379:methods* / Q000523:psychology*; D012046:Rehabilitation; D012107:Research Design