The conceptualization of participation.

Ramstad et al. present an interesting perspective on the role of pain and other factors in participation for children with cerebral palsy. The exploration of parental reports and participation outcomes (as measured by the Assessment of Life Habits) revealed significant negative impact of recurrent musculoskeletal pain and mental health problems on child participation, as well as parental satisfaction and accomplishment. Clinicians and researchers will be wise to remember the potential significance of pain and mental health for families and children with cerebral palsy. The authors also raise the very provocative thesis that participation in and of itself may not be a readily assessed outcome. Participation, defined as an individual’s involvement in life situations, remains a challenging construct to operationalize. Participation has been widely touted as a valuable outcome – perhaps the ultimate outcome. One might argue if an individual has optimal participation that all other concerns are of minimal consequence or import. The thought that a child who is optimally ‘involved in life situations’ is truly at his or her best makes sense for most of us. The challenge is to elucidate just what participation means and then be confident in our methods of measuring those constructs. Can we truly and objectively assess involvement in life situations? There are many issues. Participation might be understood as an internal, subjective process that requires enjoyment or fulfillment. Measuring what children do (or how often or with whom they do it) may not be a very direct assessment if participation is more about how one interprets one’s daily life. Elements like frequency, diversity, and location are reasonably objective, however. The role of proxy reporting of participation is also vexing, particularly if the more subjective elements are considered. Parental reports may be the only possible measure for some children, but that does not assure that parents can report participation accurately. Lastly, instruments that are meant to assess participation must be scrutinized to assure that they assess the key constructs of participation. Participation may be difficult to distinguish from activity or from quality of life in some measures, due to overlap in the operationalization of the concepts, and instrument developers have been cautioned to consider these issues. Although participation and quality of life may be delineated as objective and subjective outcomes respectively, this distinction is not universally accepted and participation outcome measures may assess a range of objective and subjective domains. Ramstad et al. have added to the understanding of participation assessment. They suggest that participation may be operationalized as an observable but not truly objective outcome. From this perspective, we could accurately assess some key elements of participation including frequency, duration, location, and the like. Due to the inherent subjectivity of other participation elements including difficulty, satisfaction, or pleasure of doing specific tasks, we would expect to report less concrete or objective results, but they would still be the result of observation. It is wise to question the construct of participation. Despite its appeal as an outcome, its true nature and optimal means of measurement are unclear. Greater discussion should explore how to specifically define participation and establish what are the necessary components of participation as well as what concepts are actually something else. In specific, greater consensus is needed to separate subjective concepts and especially quality of life and participation. Most agree that participation is very important. We must also agree on just exactly what participation is and how to measure it.