Research group for Rehabilitation Medicine, Section for Clinical Neuroscience, Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden.
PLoS One. 2019 Sep 11;14(9):e0222099. doi: 10.1371/journal.pone.0222099. eCollection 2019.
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.
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.
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.
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.
越来越多的中风患者生活在社区中，但对于如何促进他们重新融入社会的理解并不完整。如果需求得不到充分满足，困难得不到克服，可能会导致这一群体参与度有限，生活满意度降低。我们旨在通过参与者的镜头来了解中风后的生活，因此他们的观点和经验指导了这项研究。
通过摄影展的方式，这是一种行动研究方法，本研究以协作的形式与 6 名女性和 5 名男性中风后患者共同开展。参与者在日常生活中拍摄照片，最长可达四周，然后在焦点小组中讨论所有的图像。随后，参与者对该方法进行了反馈，并讨论了即将举行的摄影展。所有照片和三次焦点小组讨论都采用了一种归纳法的主题分析进行了分析。
在焦点小组讨论中，中风后的生活通过五个主要主题来概念化：参与社会的动力；通过创造力和持续训练来管理日常生活；长期来看医疗保健和康复不足；在日常生活中寻找有意义的关系和活动；参与者的声音通过精选的照片清晰地呈现出来，旨在展示每个主题，使结果更容易理解。
参与者找到了新的方法来应对日常生活中的各种情况，从而重新获得了生活的掌控感。然而，很明显，适应过程中的心理过程受到了抑郁的阻碍，一些人在持续的斗争中感到孤独。此外，中风后很长一段时间内提供的干预措施不够灵活，无法满足所有参与者的需求。
