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Participation: The Insider's Perspective

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Abstract

Brown M. Participation: the insider's perspective.

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.

Section snippets

The Insider's Perspective on Participation and the International Classification of Functioning, Disability and Health

The ICF4 is viewed as the criterion standard in conceptualizing and assessing participation. However, does it acknowledge the insider's perspective? It defines participation generally in terms of the person's “involvement in life situations”4(p14) and, in its taxonomy, provides the beginning of an operational definition of such involvements. ICF guidelines dictate that the characterization of a person's participation is accomplished through applying 2 qualifier codes: ratings of the degree of

Currently Used Methods for Assessing Participation

A variety of assessment tools have been developed to assess participation and its close relative, community integration. (The sample discussed herein is certainly not comprehensive but was selected to illustrate some of the directions being taken in incorporating the perspective of insiders, both singular and plural.) Some tools have taken an activity-based, taxonomic approach similar to that of the ICF (but largely preceding its publication), while others have focused on assessing

Improving Assessment of the Insider's Perspective on Participation

How can we do a better job of drawing on the measured insider's perspective, short of adopting goal attainment scaling–style techniques, which may be infeasible in many quarters? One avenue—certainly not the only one—is expanding the range of qualifiers that we apply to activities on a standard list. For example, in line with one of the CIM items, perceived acceptance within community-based activities is an important concern for many. Thus, a person may not particularly want to participate more

Use of Participation Measures in Clinical and Research Contexts

Many benefits accrue from incorporating the insider's perspective on participation into clinical and research contexts. First, when assessment includes not just any subjective component (eg, How satisfied are you with X?) but instead determines what is important and salient to the insider, we get better information in the sense that we are augmenting objective data with information reflecting the insider's values and goals. Second, as noted, in encouraging insiders to draw on their perspective

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Supported by funds from the National Institute on Disability and Rehabilitation Research (grant nos. H133B040033 and H133A070083) and the Centers for Disease Control and Prevention (grant no. 1R-49CE001171) to the Department of Rehabilitation Medicine, Mount Sinai School of Medicine; and by an honorarium from the Rehabilitation Institute of Chicago using funds received from the National Institute on Disability and Rehabilitation Research (grant no. H133B040032).

Presented to the American Congress of Rehabilitation Medicine, Toronto, ON, Canada, October 14-15, 2008.

No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit on the authors or on any organization with which the authors are associated.

Reprints are not available from the author.

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