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

Abstract

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.

Keywords:

• Parkinson’s disease
• gait
• participation
• qualitative health

Disclosure statement

The authors report no conflicts of interest for the work undertaken as part of this research.

Data availability statement

The full data set used for the current study are not publicly available so as not to compromise the privacy of research participants. Example transcripts and activity summaries used in the course of this work have previously been made available in Parry et al. (2019; https://doi.org/10.1080/09638288.2018.1479779).

Notes

1 * The Canadian-American actor, Michael J. Fox, lives with Parkinson’s disease. He is actively engaged in raising awareness of the condition and advocates for research initiatives. (www.michaeljfox.org)

Additional information

Funding

This research was financed by the French National Agency for Research [contract No. ANR-12-TECS-0020].