'Le regard des autres': the experience of walking in social environments as a person with Parkinson's disease

Objective To examine the experience of people with Parkinson's disease when walking in different social situations, and improve understanding of how this affects participation in meaningful activity. Methods A convenience sample of fourteen people with Parkinson's disease and a history of gait dysfunction was recruited. In-depth interviews and direct observations were conducted in the participants' home environments. Specific examples from community mobility were reviewed using first person interviewing techniques with the support of video footage. Interview transcripts were analyzed using an interpretive phenomenological approach to derive key themes. Results The feeling of 'being looked at' (le regard des autres) was the central theme in participant discourse. This sentiment was inextricably linked to the given norms of the social setting, and the relationships between participants and others within that environment. Participants sought to manage how they were perceived by others through modification of posture/gait patterns; disclosure of their neurological disease; and avoidance/withdrawal from social situations. Conclusion Further to the functional aspects of mobility, gait is important for maintaining self-image in people with Parkinson's disease. Affective gaze interactions have significant consequences upon participation restriction. These findings underscore the interest of activities which strengthen self-image and validate movement diversity in PD rehabilitation.