The creative methods employed during the PI group for the Unspoken Voices Project enabled group members to engage meaningfully in providing input to a number of areas of the research project. They also provided the space for consideration and reflection by group members to help them to understand, not only the purpose of the project but also their role within it. The stepwise introduction of methods, in terms of enacting, seeing, and doing allowed group members the opportunity to practise using each method and provide feedback on it.
At the end of Meeting 1 (the baseline), the group considered the meeting too wordy and group members reported that they did not understand key concepts concerned with the project. By Meeting 7 group members were able to use metaphors to describe their roles within in the project and in relation to other group members and members of the research team. Specific textual and visual data and vignettes taken from group meeting minutes are presented below.
The feedback from the group about the audio-visual agendas and minutes was overwhelmingly positive:
“I thought that the video content and presentation were excellent. Really genuinely. I thought it was a very fair summary of the meeting. Personally, I can cope with written material but if others favour the video and you’re willing to put in the effort, then I’m sure it will be valuable for third parties as well” (Group member, Meeting 2)
After engaging in a rating activity, the PI group were then able to reflect on the impact that the audio-visual materials had on them and, therefore, how the recruitment materials may affect potential participants to the project: “Really clear without being patronising” (Group member, Meeting 2); “How you talk in that video was brilliant. I wish everybody who works with people who use AAC or whatever was so clear” (Group member, Meeting 2). Feedback using the visual analogue scales was useful to further refine the recruitment materials which could be explored within the group.
Use of the Legoâ was less successful as some group members’ physical impairments limited the extent to which they could interact with the blocks.
During this meeting, the group also developed a shared understanding about the importance of using accessible recruitment materials. This collective meaning-making empowered a representative from the PI group to attend the NHS research ethics committee meeting, alongside members of the research team (KB, KS), to justify why audio-visual resources were so critical for use during recruitment to this project.
The use of images during meetings helped to focus group discussions and created space within meetings for group members to construct responses on their AAC devices when necessary.
The reflections that were shared about individual interpretations of the images provided valuable insight and enabled discussion between group members. For example, in one meeting, several group members preferred a picture of a staircase to represent the term ‘outcomes’ – implying that accessing AAC resulted in positive and progressive outcomes; however, for one individual, who has primary lateral sclerosis (a degenerative condition), using AAC was not considered a positive outcome; to him, AAC represented deterioration in his speech and therefore a progression of his illness.
The artist’s visual interpretation of the activities and discussion within Meetings 3-6 helped group members to engage with some of the more abstract concepts and unfamiliar terminology related to research. Changing the emphasis of the group from speaking and words towards visual media encouraged the creation and sharing of meaning through pictures. Following a discussion about research terminology, one group member was able to describe an image that he felt represented the term ‘systematic review’ and the artist then recreated it in a graphic, presented in Figure 4.
Visual images have implicit meanings which can be specific to an individual; sharing these meanings enabled the discussion to flow between group members rather than remain in the control of the facilitator. The artist’s interpretations of these discussions, as documented in the graphic minutes, provided the opportunity for further exploration of meaning by a wider audience as some of the illustrations drawn by the artist have subsequently been incorporated into dissemination materials and presentations. The illustrations have been used in conference presentations to directly represent the group members and their contributions when sharing outputs from the research study. The use of cartoon-graphics to represent group members maintains their anonymity, at the same time as personifying them and their roles within the project. Two group members planned and executed a platform presentation at a national conference by incorporating the artist’s graphics with their own pre-prepared synthetic speech voice output, stored in their AAC device.
The group used Talking Mats™ in Meeting 4 to develop definitions of unfamiliar terminology such as ‘PROM’, ‘systematic review’ and ‘synthesis’. The resulting discussion led to the generation of a set of agreed definitions which were then used to produce an accessible summary of a systematic literature review. Talking Mats™ was also employed in Meeting 5 to support the group to analyse data from a systematic literature review. An example of the Talking Mat produced can be seen in Figure 5. This activity, along with the subsequent discussion, illuminated additional themes which were pertinent to the review and which had been previously overlooked by the academic team.
Using visually supported activities rather than language mediated discussions enabled the co-construction of shared meaning. This then facilitated group members to engage in conversations, using a range of communication strategies, about their own experiences of using AAC in a supported and enabling environment.
During activities in Meetings 6 and 7 which explored objects as metaphors, people described being initially drawn to objects because they were attracted to it on some aesthetic level, for example, colourful pompoms or a toy car. The process of describing their choice led to the creation of a metaphor and describing the metaphor inspired further discussion within the group. Initially a drab, toy estate car was selected to represent the group’s ‘driving forward’ change. Then a faster sports car was spotted, and the metaphor evolved into the car representing the project. Finally, a fiery race car was chosen to represent where the expert saw the group going in future. An illustration of this metaphor was produced by the artist and can be seen in Figure 6.
In Meeting 7, group members arranged a selection of toys on table to represent the project and their relationship to it. They collectively chose a large vehicle (wooden campervan) to represent the project and then selected different toys and placed them in relation to this vehicle. One group member was a passenger in the vehicle but described himself as the ‘navigator’, another was overseeing the project from a helicopter that circled above the vehicle and kept it on track. The group agreed that a Duploâ propeller represented the group as whole and the impact that it was having on the Unspoken Voices Project.
The use of the activity involving objects enabled group members to reflect on their choices and to create their own metaphors. The metaphors provided the facilitator with an insight into the personal interpretations of each individual on the question posed.