Caroline M. Thomas, Rhonda Allison, Jos M. Latour
Thomas, C. M., Allison, R. and Latour, J. M. (2017) Using Blogs to explore the lived experience of life after Stroke: 'A journey of discovery I never wanted to take.'
Stroke can be a devastating and life changing event. This study explores the lived-experiences of stroke survivors as expressed in blogs and the role blogs play in the writers’ lives. Qualitative studies have tended to examine one aspect of life after stroke such as returning to work. As stroke often has multiple effects it is also necessary to look widely at its long-term lived-experience.
As the use of technology has increased, a new resource has evolved in the form of blogs. These narratives have enabled researchers to explore the lived-experience of stroke as a retrospective observer. In this study a phenomenological approach was used to undertake an interpretive thematic analysis of post-stroke bloggers work.
Eight bloggers gave consent for their blogs to be thematically analysed. Of the 40 categories that were developed, eight sub-themes were assimilated; internal dialogue, emotions, transition, stroke effects, healthcare, ‘in the world’, relationships, rehabilitation. Two main themes were identified related to perspectives of lived-experience; Internal relationship with ‘self’ and External relationship with ‘the world’. Participants expressed grief and loss, initially striving to regain their ‘old’ lives, their focus being recovery and independence. Although not linear in fashion, participants gradually moved towards accepting and adapting to their ‘new’ post stroke life. Participants did not stop wanting their situation to improve but began to live with their difficulties, rather than delay life while waiting to return to their previous lifestyle. Making this transition seemed to allow the participants to move their focus from an internal to external perspective and see themselves as individuals once more, rather than a lesser version of their pre-stroke self. Participants valued writing the blogs, finding them cathartic and gaining support from interactions with others. It may also be that writing the blogs allowed the participants to reflect on their situation and recognise the transitions occurring within them. Although this journey of discovery was one none of the participants wanted to take, they demonstrated that with time and the right support, it can lead to a new and meaningful future. Rehabilitation should respect this journey and its transitions, alongside physical recovery.
Although Healthcare Services played a role in the bloggers post stroke journey, their blogs demonstrated that recovery was also promoted by a range of factors, outside healthcare provision. Self-belief, the support of family and friends and the peer reflection provided by other survivors’ blogs, all seemed to contribute to the regeneration of life after stroke, with the recognition that these potential sources of support could feel detrimental at times. With growing confidence in their new way of being, the bloggers could recognise what influences and opportunities were positive for them, taking control of their future recovery and life.