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

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.