Participation objective, participation subjective: A measure of participation combining outsider and insider perspectives

Background: Participation now replaces community integration or handicap as concepts reflecting the social and interpersonal aspects of disability. If rehabilitation is to adequately measure participation, new measures of participation are needed. To represent the voice of the consumer, such measures should reflect not just "objective," normative aspects, but also subjective ones, tapping the consumer's view of participation. Objectives: To describe the development of and preliminary metrological information on a new measure of participation, Participation Objective, Participation Subjective (POPS). Methods: A total of 454 community-living individuals with traumatic brain injury (TBI) completed the POPS, as well as measures of quality of life (Life 3), depressive mood (BDI), and TBI symptoms (BISQ). The POPS requires reporting of the share of household activities performed, or the frequency or hours of nonhousehold activities. For each, the subject indicates whether he or she wants to perform more, the same, or less of the activity, and the importance of the activity to well-being. Five subscales and a total scale are calculated, for an objective component (PO), and a subjective component (PS) that reflects importance-weighted satisfaction with activity level. Results: Individuals with mild TBI scored minimally higher than those with moderate-severe TBI on PO subscores, but desired more change on the PS. Test-retest reliability for the PO and the PS and the subscales was from weak (intraclass correlation coefficient 0.28) to adequate (0.89), with PS components having better reliability. The PS component scores had the expected correlations with TBI symptoms, depressed mood, and life satisfaction, among both those with mild injury and those with moderate-severe injury. Injury severity and time since onset were not related to PO or PS scores. Conclusions: The POPS shows promise as a measure of participation. It fills a void in that it reflects both insider and outsider perspectives on participation after TBI.