Using blogs to explore the lived-experience of life after stroke: "A journey of discovery I never wanted to take"

Abstract

Aims: To explore the lived-experiences of stroke survivors as expressed in blogs and to discover the role the blogs play in the writers' lives. Background: Stroke can be a devastating, life changing event. Previous qualitative studies tend to examine one aspect of life after stroke. As stroke often has multiple effects, it is necessary to look widely at its lived-experience. New resources which can enable researchers to explore the lived-experience of stroke are blogs. Design: Phenomenological exploration using an interpretive thematic analysis. Methods: The Internet was searched for stroke survivors' blogs (January-March 2016) using pre-set criteria, seeking blogs with entries over an extended time ( > 1 year). Suitable blogs were identified and codes of meaning were identified and developed into categories, subthemes and themes. Findings: Eight blogs were identified for analysis. Of the 40 categories, eight subthemes were assimilated; internal dialogue, emotions, transition, stroke effects, health care, "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 loss and initially strove to regain their "old" lives, their focus being recovery and independence. Conclusion: Stroke survivors must transition from their previous life to a new and initially unwelcome way of being. Rehabilitation should respect this process and support stroke survivors as they undertake this individual journey.