"Back into Life-With a Power Wheelchair": Learning from People with Severe Stroke through a Participatory Photovoice Study in a Metropolitan Area in Germany

Tabea Böttger; Silke Dennhardt; Julia Knape; Ulrike Marotzki

doi:10.3390/ijerph191710465

"Back into Life-With a Power Wheelchair": Learning from People with Severe Stroke through a Participatory Photovoice Study in a Metropolitan Area in Germany

Int J Environ Res Public Health. 2022 Aug 23;19(17):10465. doi: 10.3390/ijerph191710465.

Authors

Tabea Böttger^{1

2}, Silke Dennhardt³, Julia Knape⁴, Ulrike Marotzki²

Affiliations

¹ Institute of Health Science, Faculty of Medicine, University of Lübeck, 23562 Lübeck, Germany.
² Faculty of Social Work and Health, University of Applied Sciences and Arts Hildesheim, Holzminden, Göttingen (HAWK), 31134 Hildesheim, Germany.
³ Physio- and Occupational Therapy Program, Faculty of Health, Alice Salomon Hochschule Berlin (ASH), University of Applied Sciences, 12627 Berlin, Germany.
⁴ Independent Researcher, 10439 Berlin, Germany.

Abstract

Severe stroke leads to permanent changes in everyday life. Many stroke survivors depend on support in community mobility (CM). This leads to restrictions and limited social participation. A power wheelchair (PWC) can enable independent CM and reduce such restrictions. This participatory study focused on how people with severe stroke experience their CM in a PWC in Berlin/Germany and what changes they want to initiate. A research team of five severe stroke survivors and two occupational therapists examined the question using photovoice. Stroke survivors took photos of their environment, presented, discussed, and analyzed them at group meetings to identify themes, and disseminated their findings at exhibitions and congresses. The photos emphasize the significance of and unique relationship to the PWC for the self-determined expression of personal freedom. As a complex, individualized construct, CM requires an accessible environment and diverse planning strategies by PWC users to arrive at their destination and overcome suddenly occurring obstacles. Desired changes stress CM independent of external help, increased social esteem, and active involvement in the provision of assistive devices. Voices of severe stroke survivors need to be heard more in healthcare and research to ensure the possibility of equal social participation.

Keywords: community mobility; participatory research; photovoice; power wheelchair; rehabilitation; social participation; stroke.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Disabled Persons*
Germany
Humans
Social Participation
Stroke Rehabilitation*
Stroke*
Wheelchairs*

Grants and funding

The P.A.N. Zentrum for Post-Akute Neurorehabilitation, Berlin, Germany, funded the printing of the photos and promotional materials for the first exhibition in January 2019. This research received no further funding.