Online aphasia groups for people with aphasia: from a temporary Covid-19 initiative to a sustainable community

Background and aims: During the Covid-19 pandemic an online aphasia community was made
fighting isolation and loneliness that people with aphasia often experience and that became more
evident during the pandemic. For post pandemic continuation, further development was needed to
form a community that could continue to exist. Therefor this study aimed at 1) developing a model
for a sustainable online aphasia community; and 2) evaluation of the members’ satisfaction, quality
of life, and aphasia impact after participation in the online community.
Methods: The RE-AIM framework with its five key outcomes (Reach, Effectiveness, Adoption,
Implementation, Maintenance) was used to guide and evaluate the development process and member
evaluation. 28 members was tested with before and after 6-8 months of participation with The Stroke
and aphasia quality of life scale (SAQOL-39gDK) and Aphasia Impact Questionnaire (AIQ) was
used as measures. Furthermore, seven members have been interviewed about their experience of and
satisfaction with the online community.
Results: The aphasia online community are organised in different group with variable content and
frequency and are either run by people with aphasia themselves or by volunteers (speech-language
therapists or students). Welcoming new members and placing them in the right groups are done by a
coordinator (paid student assistant) under the supervision of an experienced speech-language
therapist. SAQOL-39gDK and AIQ did not show significant changes in the members’ quality of life,
and aphasia impact, However, the qualitative evaluation showed great satisfaction with the online
community where the members felt at home in a meaningful fellowship and enjoyed time with other
people with aphasia and volunteers.
Conclusions and implications: A sustainable model for delivering online aphasia groups on zoom
includes volunteers, student coordinator and supervisor and hence continuous funding. The online
aphasia community is meaningful and valuable for people with aphasia.