JMIR Publications

ABSTRACT

Background:

Stroke and other acquired brain injuries (ABI) can entail challenging experiences for the individual both in the recovery of functions of visible or invisible impairments as well as in learning to live with the new situation. It has been shown that sharing experiences face-to-face in peer groups can be supportive in the recovery process. However, knowledge of the lived experiences of people with ABI who participate in online peer-to-peer groups is scarce.

Objective:

The aim of the present study was to explore experiences of participating in online peer-to-peer groups for people with stroke/ABI in which the participants themselves set the agenda.

Methods:

Members of two Facebook groups (FBG) for people with ABI were invited to participate in the study and 20 participants were included (14 women, 6 men, age between 24 and 74). Data was collected in semi-structured interviews in which they were encouraged to describe their experiences of participating in the FBG in detail. Interviews were conducted by telephone or Zoom, and digitally recorded. The audio recordings were transcribed and analysed using the empirical phenomenological psychological method.

Results:

The analysis showed a common meaning structure with one main characteristic Validating self and three sub-characteristics: Learning - having own experiences confirmed, Adjusting self – building competence and self-compassion, and Supporting others – becoming a valued lived-experience expert/authority. The sub-characteristics reflected a learning process – from being a newcomer with pronounced needs for knowledge and support to successively assuming the role of adviser, mentor or coach as an expert.

Conclusions:

Participation in online peer-to-peer groups can offer unique opportunities for people with ABI to validate self through processes that involve learning, developing self-compassion and compassion with others, and supporting others with similar experiences.