Delivering group support for people with aphasia in a virtual world: experiences of service providers

Figures & data

Table 1. Participant details – qualitative interviews.

ID	Group	Role	M/F	Previous experience	Years of experience with aphasia	Technological experience
C1	Saturn	Coordinator	F	SLT and stroke/aphasia group coordinator	7	None described
C2	Saturn	Coordinator	F	Stroke/aphasia group coordinator	7	Microsoft Office programmes, email, Skype, Facetime
C3	Mercury	Coordinator	F	Stroke/aphasia group coordinator	2	Computers for office work, iPads at home
C4	Jupiter	Coordinator	F	SLT and stroke/aphasia group coordinator	4	Supporting PWA to use technology
C5	Venus	Coordinator	M	Stroke/aphasia group coordinator	3	Teaching ICT in secondary school, setting up website, desktop publishing, social media
C6	Venus	Coordinator	M	Stroke/aphasia group coordinator	25+	Teleconferencing
V1*	Venus and Saturn	Volunteer	F	SLT	11	Using therapy apps, AAC and assistive tech with communication difficulties
V2	Saturn	Volunteer	F	SLT student	No data	Described self as “pretty rubbish with tech”
V3	Venus	Volunteer	M	SLT student	No data	Used tech for work, e.g., Skype
V4	Mercury	Volunteer	M	Volunteer at aphasia centre	4	Used computer for work, emailing, Facetime
V5	Mercury	Volunteer	F	Volunteer at aphasia centre	13	Uses iPads at home and aphasia centre, Skype
V6	Mercury	Volunteer	M	Volunteer at aphasia centre	2	Described self as “bit of a tech-geek, really into computers”
V7	Jupiter	Volunteer	M	Volunteer at aphasia centre	4	Described self as “very tech savvy”
V8	Jupiter	Volunteer	M	Volunteer at aphasia centre	No data	Used computer at work, Excel

V1* volunteered in two groups and was interviewed twice. Therefore, there were 14 participants who took part in a qualitative interview and 15 interviews. When reporting quotations for V1, it will be stated whether the comment referred to Venus or Saturn group.

Table 2. Characteristics of group members with aphasia.

Group	Number of members who started intervention	Number of members who completed intervention	Gender (number (%) female/male)	Mean WAB-R score (range)
Saturn	8	7	1 (12.5%)/7 (87.5%)^a	80 (60–96)
Mercury	8	8	3 (37.5%)/5 (62.5%)	76 (58–93)
Jupiter	6	5	4 (66.7%), 2 (33.3%)^a	67 (42–90)
Venus	9	9	7 (77.8%)/2 (22.2%)	74 (61–91)

^aTwo male participants withdrew from the study, one from Saturn and one from Jupiter group.

Table 3. Consensus group discussion Q1 – What are the benefits of EVA Park?

Jupiter	Points/18	Saturn	Points/18	Venus	Points/18	Mercury	Points/30
Communication/conversation It gave an opportunity for group discussion/conversation	7	Virtual world/space Safe space to try new things/experiment	7	Community/social connections To reduce social isolation	3	Community/social connections Community, group bonding	6
Accessing therapy People could use it from home	5	Community/social connections Being part of a community (reducing isolation, no judgement)	6	Accessing therapy A group you can get to – don’t have to travel, widens access for people with physical disabilities	3	Virtual world/space Safe space to share feelings and ideas, all in same boat	6
Community/social connections The opportunity to connect/interact with others outside of their usual group/therapy settings	3	Communication/conversation Developing robust communication skills	3	Virtual world/space A safe place to discuss a range of issues and ideas/share ideas, experiences, and strategies	3	Accessing therapy Ease of meeting, in own home, not travelling	5
Avatar More comfortable to be in EVA compared to talking on phone, due to being able to see the avatars	1	Accessing therapy Ease of access to therapy	1	Avatar The avatar provided protection	2	Avatar Avatar – feeling liberated, more free to express opinions, enjoyment, euphoria!	3
Other Good to have the chance to try something new and be part of something bigger	1	Developing or transferring skills Transferring skills – EVA provides a bridge between therapy environment and the real world	1	Communication/conversation It offers a heightened focus on speech-related aspects of communication and it helps create an audience, which suits the story-tellers	2	Developing or transferring skills Developing skills, e.g., strategy sharing, role-plays, and technology	2
Other Gives people with specific fields of interest an opportunity to shine	1			Virtual world/space Opportunities for different kinds of activity and communication (e.g., art and diving), because it’s an imaginary space	2	Communication/conversation Improved speech – good place to practice skills	2
				Virtual world/space A fun place to try out new skills and ideas	1	Virtual world/space Unique place, new, exciting, stimulating for conversation	2
				Other Good for team-building, helpers can communicate efficiently, as it’s easier to meet before group	1	Virtual world/space Virtual world has positive effect on mood, e.g., relaxing and sunny in EVA Park when bad weather in real world	1
				Virtual world/space An adaptable space where clients and supporters can work at a variety of levels	1

Table 4. Consensus group discussion Q2 – how could the group intervention be improved?

Jupiter	Points/18	Saturn	Points/18	Venus	Points/18	Mercury	Points/30
Training More staff training about content of sessions (rather than just on technology)	3	Order of sessions/topics Doing project at very end of intervention, to improve continuity and reduce interruptions, then finish with party	7	Other Separate log-in time 15 min before group starts	7	Content of sessions More flexibility, less structure	8
Order of sessions/topics Order of sessions could be improved by starting with practising technical skills, then getting-to-know-you activities, then lighter topics, then heavier/more personal topics	3	Other Having access to the virtual world at the end of the project	5	Number/frequency of sessions Weekly rather than fortnightly meetings	4	Content of sessions Avoiding topics that are heavy, focus on lighter topics/fun side of EVA	5
Training Start with technical training, e.g., learning to fly/sit/move, troubleshooting	3	Content of sessions Project – needing more time to establish as a group and choose the project	2	Training A more thorough induction process for group leaders at the beginning	2	Number/frequency of sessions Sessions held weekly rather than fortnightly	4
Other Intervention manual could be more aphasia-friendly	3	Other A way to facilitate participants to meet up between sessions in the virtual world	2	Number/frequency of sessions More sessions, carried out weekly	2	Communication support for PWA Members being able to indicate when they don’t want to contribute (hard to interpret silence)	3
Communication support for PWA Need more ways to support communication as difficult to rely on speech only	3	Training More training and time to add/personalise content	1	Technical issues Acknowledgement that volunteers/coordinators may need to go back to some participants in person	2	Order of sessions/topics Topics addressing personal/sensitive issues – would be better to have structure of heavy topic at beginning of session then moving on to lighter topic	3
Technical issues Running groups would have been easier if no technical problems	2	Other The boards didn’t work so well when the material was less visual	1	Technical issues Fewer changes in location, as changes can be excluding	1	Other Smaller groups	3
Emotional support Need method of 1:1 follow-up of emotional issues that arise during group sessions	1					Emotional support Fully trained therapist present when discussing personal/sensitive issues	2
						Content of sessions More role plays	2

Table 5. Consensus group discussion Q3 – how could you improve the technical side of EVA?

Jupiter	Points/18	Saturn	Points/18	Venus	Points/18	Mercury	Points/30
Tech general Technology could be more modern	7	Sound/mic Improve sound quality/reduce interference	6	Communication support A Skype-type help box, so that participants could show coordinators/volunteers what the problem was	6	Sound/mic Clearer symbol for microphone	10
Communication support Technology could have been more aphasia-friendly	5	Sound/mic Making it clear that all participants must wear headphones	4	Avatars Avatars should be visibly able to speak	4	Other Clearer guidance re checking the spec needed for laptop and minimum broadband speed required	3
Avatars Avatars could have been simpler so that people with aphasia could set them up independently	3	Sound/mic Colours on microphone more obvious	4	Sound/mic Sound issues including better differentiation between colours for having sound on/off and a one-step, rather than two-step process, to turn mic on	3	Tech assistance More time setting members up with technical side, more technical support	3
Sound/mic Microphone button could be improved	1	Communication support More aphasia-friendly support to help facilitate PWA to trouble-shoot tech issues	2	Avatars A way that everyone could be clothed all the time	2	Communication support Interactive white board for writing key words	3
Tech general Interface needed to be tamper-proof	1	Sound/mic One-click button for sound	2	Avatars Process of selecting and changing avatar should be simplified	2	Tech assistance Better remote control so that volunteers can assist members remotely	3
Other Easier to make YouTube videos play simultaneously	1			Tech assistance Needed more emphasis on the importance of TeamViewer	1	Tech assistance A button to indicate “I need help”/“I’m stuck”	3
						Tech general Uniform and simpler interface	2
						Other Training video	2
						Other Better internal communication for volunteers	1

Table

Introduction
Biography
Work	Interests	Technology
Group
Coordinators: Tell me about the group you coordinate (people, how recruited, know previously)
Volunteers: Tell me about the group you worked with (people, know previously)
Opening
Tell me about EVA.	What was your role? What did your group do in EVA?	Activities your group liked/enjoyed more/less?
Main
Experiences of using EVA
Enjoy?	Getting prepared?	Providing support	Receiving training/support?
Which aspects of training/support were helpful?
How often?	In between groups?	Duration?	Could it have gone on longer?
How did it change over time?
Compare to face to face groups	Group bonding?	What helped people feel connected?
Did you get to know group members (if not previously known)? Did you feel others got to know you?
What difference did taking part make to group members?
Communicating/Talking	Social	Taking part in life generally	Trying new things
Using tech	Confidence (meeting new people)	New friendships – are they still in touch? How in touch?
What difference did being a coordinator/volunteer make to you?
Improvements
Anything difficult to use?
Suggest one change?
End
In a nutshell, what are your views about EVA?
When you think back, what stands out? What do you remember?
Like to continue using it in your work? In what way?
Recommend EVA to others?

Table

1. Personal details

1.1 Family

1.2 Household/living arrangements

1.3 Previous/current employment/voluntary work

1.4 Interests

1.5 Technology use

1.6 Personality/communication style

2. Communication

2.1 Real world

2.2 Virtual world

3. EVA

3.1 Recruitment/referral/reasons for taking part

3.2 World

3.2.1 Places

3.2.2 Environment

3.2.3 Avatar

3.2.4 Play

3.3 Visiting EVA between group sessions

3.4 Group/social aspects

3.5 Training/learning/support

3.6 Length of involvement/sessions

3.7 Technical aspects

3.8 Improvements

3.9 EVA to continue/Future use

4. Service providers’ perceptions of impact of taking part for people with aphasia

4.1 Role/identity

4.2 Activity

4.3 Aspects of personality

4.4 Technology use

4.5 Affect

4.6 Confidence

4.7 Communication

4.8 Contributing to research

5. Impact of taking part for coordinator/volunteer

5.1 Role/identity

5.2 Technology use

5.3 Affect

5.4 Confidence

5.5 Developing skills

5.6 Contributing to research

6. Social connectedness

6.1 Before EVA

6.2 During EVA

6.3 Outside EVA

7. Virtual worlds

7.1 Experience before EVA

7.2 Views on virtual worlds

7.2.1 Pre-EVA

7.2.2 Post-EVA

7.3 Differences and similarities between virtual and face-to-face groups

8. Predominant memory of EVA

9. Advice

10. Memorable quotes

Free nodes

11. Affect

11.1 Negative

11.2 Neutral

11.3 Positive

12. Confidence

12.1 Negative

12.2 Neutral

12.3 Positive

13. Facilitators or barriers

13.1 Facilitators

13.2 Barriers

Parent themes in bold, 2nd level in normal font-weight, 3rd level indented.

Table

Theme	Definition
1. Personal details	Information relating the interviewee’s background, personal circumstances, interests, use of technology before they started the project
1.1 Family
1.2 Household/living arrangements	Who/where they live, details about accommodation
1.3 Previous/current employment/voluntary work
1.4 Interests	Current or past interests
1.5 Technology use	Their use of technology (e.g., for social, work, leisure etc. purposes) before stroke
1.6 Personality/communication style	Comments about personality traits and their communication style (e.g., whether they are talkative, reticent, outgoing, private, and good listeners)
2. Communication	Comments relating to communication
2.1 Real world	Comments relating to communicating in the real world
2.2 Virtual world	Comments relating to communicating in a virtual world (EVA or other platforms such as Second Life)
3. EVA	Any comments relating to EVA
3.1 Recruitment/referral/reasons for taking part	How they heard about the project/how they were referred or recruited/reasons for choosing to take part
3.2 World
3.2.1 Places	General references to the different locations in EVA Park Specific references to the particular locations to be coded at 4th level.
3.2.2 Environment	Comments about the environment in EVA Park
3.2.3 Avatar	Comments relating to the experience of having an avatar
3.2.4 Play	Comments about the playful/fun/joyful aspects/experiences of EVA Park
3.3 Visiting EVA between group sessions	Comments about experiences in EVA between their main group sessions – these could have been pre-planned meetings or spontaneous. They could involve interacting with others or exploring the world on their own.
3.4 Group/social aspects	Comments about members of the group, including references to subgroups of participants, roles, and relationships or interactions between group members, and how these changed during the project. Comments relating to planned activities and topics.
3.5 Training/learning/support	How they learnt to use the equipment and learnt to operate EVA Park software, training/support they received with technical aspects and participating in/running group activities, e.g., from EVA team, other group members, family members, friends, and carers.
3.6 Length of involvement	Comments about length of sessions and length of project, e.g., whether it was too long or if they’d have liked it to carry on longer.
3.7 Technical aspects	Comments about getting equipment set up (e.g., installing internet connections, logging in to EVA, etc.), equipment used (e.g., laptop, broadband) and about using EVA Park (e.g., how accessible, usable it was).
3.8 Improvements	How the group sessions, therapy manual, technical aspects and EVA Park world could have been improved (e.g., suggested additions/simplifications). Also, improvements that could have been made to the group (e.g., size, management of group).
3.9 EVA to continue/Future use	Whether they would like to continue using EVA in future, how they could envisage it being used, e.g., continuation of group sessions and/or other uses.
4. Service providers’ perceptions of impact of taking part for people with aphasia	Changes (positive or negative) due to taking part
4.1 Role/identity	Changes in roles and/or sense of identity
4.2 Activity	Changes in activities in real world
4.3 Aspects of personality	Changes in personality due to taking part, e.g., becoming more out-going/telling jokes
4.4 Technology use	Changes in use of technology beyond EVA group sessions
4.5 Affect	Changes in mood/emotions
4.6 Confidence	Changes in confidence
4.7 Communication	Changes to communication
4.8 Contributing to research	Comments about their contribution to research project/feelings about this
5. Impact of taking part for coordinator/volunteer
5.1 Role/identity	Changes in roles and/or sense of identity
5.2 Technology use	Changes in use of technology beyond EVA group sessions
5.3 Affect	Changes in mood/emotions
5.4 Confidence	Changes in confidence
5.5 Developing skills	Comments about skills developed
5.6 Contributing to research	Comments about their contribution to research project/feelings about this
6. Social connectedness	Comments about interactions and feelings of connection to others/being part of a group. Could related to quality and number of interactions or cohesiveness of group. Includes negative references to not feeling socially connected.
6.1 Before EVA	Before EVA group sessions started
6.2 During EVA	While the EVA group sessions were taking place
6.3 Outside EVA	Social connectedness in real world
7. Virtual worlds
7.1 Experience before EVA	Previous experiences of using virtual worlds before EVA
7.2 Views on virtual worlds
7.2.1 Pre-EVA	Views about virtual worlds that interviewee held before taking part in EVA project
7.2.2 Post-EVA	Views about virtual worlds since taking part in EVA project
7.3 Differences and similarities between virtual and face-to-face groups	Comparisons between groups delivered face to face and in a virtual world
8. Predominant memory of EVA
9. Advice	Advice they would give to others about EVA/taking part
10. Memorable quotes
Free nodes
11. Affect	Any comments relating to mood/emotions
11.1 Negative	Negative mood/emotions
11.2 Neutral	Neutral mood/emotions
11.3 Positive	Positive mood/emotions
12. Confidence	Any comments relating to confidence (confidence must be explicitly mentioned, rather than implied)
12.1 Negative	Comments about lack of confidence
12.2 Neutral	Neutral comments relating to confidence
12.3 Positive	Positive comments about confidence
13. Facilitators or barriers	Any comments about facilitators or barriers relating to others themes (e.g., communication/technology/group aspects)
13.1 Facilitators
13.2 Barriers

Parent themes in bold, 2nd level in normal font-weight, 3rd level indented.

Table

	Categories	Elements of thematic framework mapped to category
1	Service providers’ perceptions of EVA Park as a platform for group social support	1. Personal details 1.4. Interests 1.5. Technology use 2. Communication 3. EVA 3.2. World 3.3. Visiting EVA between sessions 3.4. Group/social aspects 3.5. Training/learning support 3.7. Technical aspects 3.9. EVA to continue/future use 7. Virtual worlds 8. Predominant memory of EVA 9. Advice 12. Confidence
2	Views about the intervention	3. EVA 3.3. Visiting EVA between sessions 3.4. Group/social aspects 3.6. Length of involvement/sessions 3.9. EVA to continue/future use 8. Predominant memory of EVA 9. Advice 11. Affect
3	Emotional responses to the intervention	3. EVA 6. Social connectedness 7. Virtual worlds 8. Predominant memory of EVA 11. Affect
4	Barriers experienced	2. Communication 3. EVA 7. Virtual worlds 13.2. Barriers
5	Facilitators experienced	2. Communication 3. EVA 7. Virtual worlds 12. Confidence 13.1. Facilitators
6	Suggested improvements to the intervention or its delivery	3.0. EVA 3.8. EVA – improvements 3.9. EVA to continue/future use
7	Impact of taking part for service providers	5. Impact of taking part for coordinator/volunteer 11. Affect 12. Confidence
8	Service providers’ perceptions of impact of taking part for members with aphasia	2. Communication 4. Impact of taking part for people with aphasia 6. Social connectedness 11. Affect 12. Confidence

Data availability statement

Due to the nature of this research, the supporting data are not available to be shared publicly due to ethical restrictions.