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

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  • Tabea Böttger

    (Institute of Health Science, Faculty of Medicine, University of Lübeck, 23562 Lübeck, Germany
    Faculty of Social Work and Health, University of Applied Sciences and Arts Hildesheim, Holzminden, Göttingen (HAWK), 31134 Hildesheim, Germany)

  • Silke Dennhardt

    (Physio- and Occupational Therapy Program, Faculty of Health, Alice Salomon Hochschule Berlin (ASH), University of Applied Sciences, 12627 Berlin, Germany)

  • Julia Knape

    (Independent Researcher, 10439 Berlin, Germany)

  • Ulrike Marotzki

    (Faculty of Social Work and Health, University of Applied Sciences and Arts Hildesheim, Holzminden, Göttingen (HAWK), 31134 Hildesheim, 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.

Suggested Citation

  • Tabea Böttger & Silke Dennhardt & Julia Knape & Ulrike Marotzki, 2022. "“Back into Life—With a Power Wheelchair”: Learning from People with Severe Stroke through a Participatory Photovoice Study in a Metropolitan Area in Germany," IJERPH, MDPI, vol. 19(17), pages 1-25, August.
    • Handle: RePEc:gam:jijerp:v:19:y:2022:i:17:p:10465-:d:895062
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    References listed on IDEAS

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    1. Alice Pellichero & Lisa K. Kenyon & Krista L. Best & Marie-Eve Lamontagne & Marie Denise Lavoie & Éric Sorita & François Routhier, 2021. "Relationships between Cognitive Functioning and Powered Mobility Device Use: A Scoping Review," IJERPH, MDPI, vol. 18(23), pages 1-25, November.
    2. Revathi Balakrishnan & Benjamin Kaplan & Rennie Negron & Kezhen Fei & Judith Z. Goldfinger & Carol R. Horowitz, 2017. "Life after Stroke in an Urban Minority Population: A Photovoice Project," IJERPH, MDPI, vol. 14(3), pages 1-12, March.
    3. Doris Arnold & Andrea Glässel & Tabea Böttger & Navina Sarma & Andreas Bethmann & Petra Narimani, 2022. "“What Do You Need? What Are You Experiencing?” Relationship Building and Power Dynamics in Participatory Research Projects: Critical Self-Reflections of Researchers," IJERPH, MDPI, vol. 19(15), pages 1-25, July.
    4. von Unger, Hella & Narimani, Petra, 2012. "Ethische Reflexivität im Forschungsprozess: Herausforderungen in der Partizipativen Forschung," Discussion Papers, Research Group Public Health SP I 2012-304, WZB Berlin Social Science Center.
    5. Chung, Kimberly & Lounsbury, David W., 2006. "The role of power, process, and relationships in participatory research for statewide HIV/AIDS programming," Social Science & Medicine, Elsevier, vol. 63(8), pages 2129-2140, October.
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