Authors

  1. Cicerone, Keith D. PhD, ABPP

Article Content

The Oxford English Dictionary defines participation as "the action or state of taking part in something, or sharing activities in common with others." In attempting to formulate a common framework for evaluating health and disability, the World Health Organization's International Classification of Functioning (ICF)1 has recently proposed a radical shift from cause to impact, with a new emphasis on the view that "every human being can experience a decrement in health, and therefore experience some disability." This shift in emphasis from disease to health also acknowledges a "new" biopsychosocial model of disability that attempts to avoid reducing the whole, complex notion of disability to only one of its aspects. The social aspects of disability are expressed most clearly in the ICF's concept of participation as "involvement in a life situation," or "the lived experience" of people in their actual context. Participation is qualified by the individual's capacity to execute a task or action, so that most domains of functioning reflect the integration of activities (eg, learning and applying knowledge, communication, interpersonal interactions) and participation.

 

This focus on the "whole, complex notion of disability" has of course long been at least an implicit aspect of the rehabilitation of people with traumatic brain injury (TBI). However, the incorporation of this focus into specific methods to deliver rehabilitation and to assess the outcomes of rehabilitation is relatively recent. For the most part, the field continues to rely on first-generation procedures for assessing community integration after TBI. There is now a resurgence of interest in refining these measures to more accurately reflect "the lived experience" of the person with a TBI. There is also a growing interest in understanding the most effective way for rehabilitation to affect outcomes at the level of community integration, or participation, and in providing treatment to individuals directly within their community. These concerns are reflected in the articles within this issue of the Journal of Head Trauma Rehabilitation.

 

The articles by Dumont and her colleagues and by Corrigan and Bogner represent attempts to understand the nature of participation after TBI. Dumont and colleagues used a combination of qualitative and quantitative procedures to explore some of the person variables that might be related to improved social participation after TBI. Qualitative inquiry was used to identify potential personal characteristics contributing to social participation. The results suggest a complex and dynamic interplay between limitations and positive personal characteristics, and raise several important questions regarding the potential role of rehabilitation.

 

Corrigan and Bogner use exploratory factor analysis of current measures of community integration, health status, and quality of life in a group of patients with TBI who had previously received rehabilitation. Their findings are consistent with the ICF system, in demonstrating the ability of measures to identify overlapping factors related to activity and participation. Their findings also point again to the importance of considering the individual's perspective, and suggest that subjective well-being represents a distinct and important outcome that has been largely neglected in evaluating the effects of rehabilitation.

 

The article by Brown and her colleagues describes their approach to developing a second-generation measure of community integration that explicitly incorporates both the objective and subjective aspects of participation. Their initial results with this measure appear to validate the view that the different domains of activity/participation make unique contributions to the overall, objective assessment of participation. Their findings also extend the theme identified in the first two articles in suggesting that the individual's satisfaction with his or her functioning represents an additional, evaluative qualifier of participation in one's life activities.2

 

Brown suggests that better outcome measures are necessary to identify the "difference rehabilitation makes." The impact of rehabilitation on participation for patients with TBI is an underlying theme of the articles by Glenn and his colleagues and by Cicerone. Glenn's article represents an important attempt to define the specific characteristics of community-based rehabilitation programs. This is a necessary step to understanding the contribution of different treatment components to successful rehabilitation outcomes. The findings reported in this issue of JHTR are based on the survey of facility-based community integration programs. In the final article, I have allowed myself to speculate about the question of whether or not rehabilitation makes a meaningful difference to participation after TBI. In the course of considering this question, I return to the importance of the "lived experience" of the person and the "insider's perspective" on rehabilitation.

 

I believe that the contributions to this issue move us closer to understanding how people who have suffered a TBI may share a common experience, and most fully take part in life.

 

REFERENCES

 

1. World Health Organization. Towards a Common Language for Functioning, Disability and Health: ICF. Geneva: World Health Organization; 2002. [Context Link]

 

2. Gray DB, Hendershot GE. The ICIDH-2: developments for a new era of outcomes research. Arch Phys Med Rehabil. 2000;81(suppl 2):S10-S14. [Context Link]