Experiences of participating in group-based rehabilitation programmes: A qualitative study of community-dwelling adults with post-stroke aphasia.

Abstract

People with post-stroke aphasia tend to have smaller social networks, a higher risk of depression and poorer health-related quality of life than those who do not have aphasia after stroke. Stroke-specific or general rehabilitation programmes offered by community-based organizations are commonly group-based and involve discussions among group members with or without stroke. Research has shown that people with post-stroke aphasia may be unable to participate fully in verbal sharing of experiences and exchange of thoughts. To explore the experiences of people with post-stroke aphasia in relation to participating in group-based rehabilitation programmes organized by community-based organizations. A qualitative design was adopted, including individual, semi-structured interviews with 20 adults with post-stroke aphasia recruited from community-based rehabilitation centres and support groups. The participants had a mean age of 68.86 ± 13.54 years and a mean post-stroke duration of 9.24 ± 7.72 years. They had participated in at least one group-based rehabilitation programme organized by community-based organizations in the past year. The participants were asked about their experiences of attending group-based programme(s), thoughts and feelings while interacting with the facilitators and group members, and satisfaction with their participation. The interview data were thematically analysed. Three themes were identified: (1) hurdles to active and fulfilling participation including the dominance of verbal sharing, short duration of the programme, being a minority in the group and accumulated negative experiences; (2) strategies adopted to improve participation including accepting a reduced speaking ability, having support from caregivers, and trying mobile apps to vocalize and supplement meanings; and (3) a preference for certain group conditions including receiving invitations by staff with whom they were familiar, groups that are led by experienced facilitators, a large or small group, the dominance of non-verbal activities, and inclusion of only people with post-stroke aphasia. The findings showed that people with post-stroke aphasia experience difficulties participating more actively in group-based rehabilitation programmes due to hurdles in terms of the structure and format of the programmes and accumulation of negative experiences. Facilitating positive group experiences for these people with innovative methods, such as using technology and providing professional and standby support, would be helpful. Longer sessions with smaller groups, exclusively including people with post-stroke aphasia and involving more non-verbal activities to help them express feelings, are suggested to optimize the benefits they derive from these group-based programmes. What is already known on the subject Stroke-specific or general group-based rehabilitation programmes are commonly offered by community-based organizations to support the recovery of people with or without stroke. However, some people with post-stroke aphasia may be unable to participate fully in verbal sharing of experiences and exchange of thoughts during these group-based programmes, which can limit the benefits they derive from these programmes. What this paper adds to existing knowledge This study explored the experiences of people with post-stroke aphasia in relation to participating in group-based rehabilitation programmes not specifically designed for people with stroke-induced aphasia organized by community-based organizations. The findings provide an insight into how these people participate in groups, their thoughts and feelings during interactions with the facilitators and group members, their satisfaction with their level of participation, and the characteristics of the groups they prefer to join. What are the potential or actual clinical implications of this work? People with post-stroke aphasia experience difficulties participating more actively in group-based programmes due to hurdles in terms of the structure and format of the group-based programmes and accumulation of negative experiences contributing to decreased motivation to participating in groups. More positive group experiences can be fostered by adopting longer sessions with smaller groups that exclusively include people with post-stroke aphasia and involve more non-verbal activities to help them express their feelings. Communication partner training for facilitators and the use of technology to support communication are suggested to promote active and fulfilling participation of the people with aphasia in group-based programmes.