The meaning and experience of participation in stroke survivors.

In the UK, one in four men and one in five women will be expected to have experienced a stroke by the time they are eighty five (Daniel, Wolfe, Busch, & McKevitt, 2009). Medical advancements which make survival more likely mean that there is a growing population of people living with the long term impact of stroke. The success of rehabilitation was traditionally judged by functional ability and coping with everyday tasks. The inclusion of the term ‘participation’, in the ICF (World Health Organisation, 2001) represents a shift in healthcare and research to a more holistic view of rehabilitation. Pre-defined measures of participation may not capture subjective experience, and little research exists which investigates participation in stroke survivors from a patient perspective. This research aimed to explore the meaning and experience of participation in stroke survivors. These aims required the collection of deep, rich data, from a small sample of participants. A qualitative methodology was therefore needed, and Interpretive Phenomenological Analysis was identified as an appropriate approach by which to find the underlying essences of a multiplicity of experiences. The central themes within the findings were ‘meaning’ and ‘experience’. ‘Meaning’ included the sub-themes ‘being actively involved’, ‘making meaningful choices’ and ‘being me’. ‘Being me’ described the relationship between self-identity, role and participation, which has not previously been explored in relation to stroke. Sub-themes of ‘experience’ were ‘acceptance’, ’coping’ and ‘new participation’. The findings suggest that each stroke survivor has a unique experience of participation, therefore individualised approaches to rehabilitation may be most effective. Future research should include exploring the link between participation and self-identity in stroke survivors, in order to build on our understanding of the link between participation and self-identity in relation to stroke