“My life after stroke through a camera lens”- A photovoice study on participation in Sweden

BACKGROUND: An increasing number of people with stroke live in their communities, yet the understanding of how their reintegration into society can best be facilitated is incomplete. If needs are not sufficiently met and difficulties overcome, it may result in limited participation and decreased life satisfaction for this group. We aimed to understand life after stroke through the lens of participants’ cameras, and hence their views and experiences guided this study. METHODS: By the means of photovoice, an action research method, this study was conducted in a collaborative format with six women and five men after stroke. Participants photographed in everyday life for up to four weeks and then met to discuss all images in a focus group setting. Subsequently, participants gave feedback on the method and discussed the upcoming photography exhibition. All photos and the three focus group discussions were analyzed using a thematic analysis with an inductive approach. RESULTS: In the focus group discussions, life after stroke were conceptualized through five main themes: a driving force to participate in society; managing everyday life through inventiveness and persistent training; insufficient healthcare and rehabilitation in the long-term perspective; finding meaningful relationships and activities in daily life. Participants’ voices are made clear through selected photos, which aim to present each theme and make results easier to understand. CONCLUSIONS: Participants found new ways to approach everyday life situations and had thereby regained a sense of control in life. However, it was evident that psychological processes towards adaptation were hindered by depression and that some individuals felt alone in an ongoing struggle. Additionally, available interventions a long time after stroke were not flexible enough to address all participants’ needs.