Participation Measurement Systems Development and Training: Preliminary Literature Review

Most measures of participation and environmental influences on participation have been developed using the medical model. This model measures performance in controlled settings such as rehabilitation units (Whiteneck, 1994; Brandt, & Pope, 1997; Iezzoni, 2003); compares the performance of people with disabilities to people without disabilities (Verbrugge & Jette, 1994; Dijkers, Whiteneck, & El-Jaroudi, 2000); restricts measures to capacity to perform personal care or other task specific activities (Glass, 1999, Jette & Badley, 2000); and attributes deficits to the lack of capacity of the individual (Fougeyrollas, St. Michel, Bergeron, & Cloudier, 1991; Gray & Hendershot 2000).

These measures do not encompass the complexity of participation in context, the reciprocal nature of person x environment interactions or the different levels of analysis that can be used to address the interdependent interactions of people participating in their ‘lived’ environments (Gray, Hollingsworth, Stark, & Morgan, 2006). The conceptual framework and theoretical perspective used in our approach to assessing important variables that influence participation are driven by an ecological perspective on the environment  more specifically, by the ecological perspective (Bronfenbrenner 1979; 1989; 1999; Wachs, 1999) in which the various levels of the environment are engaged in a dynamic interrelationship. The emphasis is on the transactions between individuals and their environments, from the most immediate environments (e.g., family as microsystem) to the most distal environment (e.g., cultural norms as macrosystem).

From an analytical standpoint, the ecological perspective directs the focus of community receptivity research to the mutually shaping transactions between the individual with a disability and his or her environment. Examining the ecological niche of people with mobility and other impairments can illustrate the relative participation disparities and environmental settings that influence full, community participation (Fougeyrollas & Gray, 1997; Meyers & Andresen, 2000; Gray, Gould, & Bickenbach, 2003). Developing, modifying and testing measurement tools capable of capturing important person and environment factors that contribute to or deter community participation, are the objectives of the series of studies in this portion of the RRTC/MICL (Measurement and Interdependence in Community Living).

To study changes in community participation, a set of measures is required to capture interactions of the person and the environment (Gross & Hahn, 2004). Several participation and environment measures have been developed over the past two decades that address a variety of activities and different aspects of the environment. A review of 11 candidate measures of participation (Perenboom & Chorus, 2003) found that none met the concept of participation proposed by the ICF (2001). Two measures developed by Whiteneck and colleagues, (Craig Handicap Assessment and Reporting Technique (CHART) and Craig Hospital Inventory of Environmental Factors (CHIEF), address some aspects of participation and environments (Whiteneck, Charlifue, Gerhart, Overholser, &  Richardson, 1992; Whiteneck, Harrison-Felix, Mellick, Brooks, Charlifue, & Gerhart, 2004), but they are based on comparison to people without disabilities (normative comparisons), designed for large sample studies, and are not used as a system.

Patrick Fougeyrollas has developed a participation measure (LIFE-H) and an environmental measure, Measurement of the Quality of the Environment (MQE) that address activities done in context and can be used as a system. The LIFE-H measure focuses on the difficulty of doing activities, the support needed to do activities, and the satisfaction in doing activities (Noreau, Desrosiers, Robichaud, Fougeyrollas, & Rochette, 2004). However, these measures do not address the temporal aspects (frequency and time spent), do not correct participation values for the choice and importance of doing activities, and do not include perceived personal limitations for participation in different activities. The MEQ includes an extensive list of environmental factors but many involved the perceptions of quality of services provided without linking the influence of such services on participation (Fougeyrollas, Noreau, Michel, & Boschen, 1999).

References
Bronfenbrenner, U. (1979). The ecology of human development. Cambridge, MA: Harvard University Press.

Dijkers, M., Whiteneck, G. G., & El-Jaroudi, R. (2000). Measures of social outcomes in disability. Archives of Physical Medicine & Rehabilitation, 81(2), S63-S80.

Fougeyrollas, P., & Gray, D. B. (1997). ICIDH, handicap and environmental factors and social change: The importance of technology. In Gray, D. B., Quatrano, L. A., & Lieberman, M. L. (Eds.). Using, designing and assessing assistive technology. Baltimore, MD:Brookes Publishing.

Fougeyrollas, P., Noreau, L., Bergeron, H., Cloutier, R., Dion, S. A., & St,-Michel, G. (1998). Social consequences of long term impairments and disabilities. International Journal of Rehabilitation Research, 21, 127-141.
Fougeyrollas, P., Noreau, L., Michel, G., & Boschen, K. (1999). Measure of the quality of environment (MQE) Version 2. Charles, (Quebec), Canada: INDCP-C.P. 225. 

Fougeyrollas, P., St. Michel, G., Bergeron H., & Cloudier, R. (1991). The handicap creation process. ICIDH International Network 4, 8-15.
Glass, T. A. (1998). Conjugating the “tenses” of function: Discordance among hypothetical, experimental, and enacted function in older adults. Gerontologist, 38 (1), 101-112. 

Gray, D. B., Gould, M., & Bickenbach, J. E. (2003). Environmental barriers and disability. Journal of Architecture and Planning Research 20, 29-37.
Gray, D. B. & Hendershot, G. E. (2000). The ICIDH-2: Developments for a new era of outcomes research. Archives of Physical Medicine and Rehabilitation, 81(Suppl 2), S10-S14.

Gray, D. B., Hollingsworth, H. H., Stark, S. L., & Morgan, K. A. (2006). PARTS/M:  Psychometric properties of a measure of participation for people with mobility impairments and limitations. Archives of Physical Medicine and Rehabilitation, 87 (2), 189-197.

Iezzoni, L. I. (2002). Using administrative data to study persons with disabilities.  Milbank Quarterly, 80(2), 347-79.

Iezzoni, L. I. (2003). When walking fails: Mobility problems of adults with chronic conditions. Berkeley, CA: University of California Press.

Jette, A. M., & Badley, E.  (2000). Conceptual issues in the measurement of work disability.  In N. Mathiowetz & G. S. Wunderlich (Eds.), Survey measurement of work disability:  Summary of a workshop. (pp. 4-27). Washington, DC: National AcademyPress.

Meyers, A. R., & Andresen, E. M. (2000). Enabling our instruments: Accommodation, universal design, and access to participation in research. Archives of Physical Medical Rehabilitation, 81, (Suppl 2):S5-S9.

Noreau, L., Desrosiers, J., Robichaud, L., Fougeyrollas, P., Rochette, A., & Viscogliosi, C. (2004). Measuring social participation: Reliability of the life in older adults with disability. Disability and Rehabilitation, 26(6), 346-352.

Perenboom, R. J. & Chorus, A. M. (2003). Measuring participation according to the International Classification of Functioning, Disability and Health (ICF). Disability and Rehabilitation, 25, 577-87.

Verbrugee, L. & Jette, A. (1994). The disablement process. Social Science and Medicine, 38:1-14. 

Wachs, T. D. (1999). Celebrating complexity: Conceptualization and assessment of the Environment. In S.L. Friedman & T. D. Wachs (Eds.) Measuring environment across the life span: Emerging methods and concepts (pp. 357- 392). Washington, DC: American Psychological Association, 1999.

Whiteneck, G. G. (1994). Measuring what matters: Key rehabilitation outcomes. Archives of Physical Medical Rehabilitation, 75, 1073-1076.

Whiteneck, G. G., Charlifue, S. W., Gerhart, K. A., Overholser, J. D.,  & Richardson, G. N. (1992). Guide for use of the CHART Craig Handicap Assessment and Reporting Technique. Englewood, CO: Craig Hospital.

Whiteneck, G. G., Harrison-Felix, C. L., Mellick, D. C., Brooks, C. A., Charlifue, S. B., & Gerhart, K. A. (2004). Quantifying environmental factors: A measure of physical, attitudinal, service, productivity, and policy barriers. Archives of Physical Medicine and Rehabilitation, 85, 1324-1335.