The meaning of participation to stroke survivors: a qualitative study

Background/Aims:

The effect of stroke can be all encompassing, and has an impact on significant roles in life. Assessing someone's level of participation is seen as essential to understanding the social impact of a disability on a person's life, and tailoring support accordingly. This study aimed to examine the meaning of participation to stroke survivors, in order to provide insight into the meaning of participation in the context of a stroke.

Methods:

A qualitative approach drawing on methods of phenomenology was used, with data collected via semi-structured interviews and a follow-up focus group. Analysis was undertaken using techniques of interpretative phenomenological analysis.

Findings:

Six stroke survivors and six carers were interviewed, and four stroke survivors attended a focus group. Three main themes in relation to the meaning of participation were identified in the data: ‘being actively involved’; ‘making meaningful choices’; and ‘being me’.

Conclusions:

The work confirms the findings of previous studies on participation, and adds to current understandings by developing the meaning of ‘involvement’ beyond a social concept. It highlights that ‘involvement’ can include active engagement in life through being alone. It also identifies a specific link between stroke survivors’ sense of self, and participation.