Group facilitation and communication access

Stringer (2007) differentiates the resource person role of the participatory action researcher from researchers working within more conventional research paradigms. With expertise presumed as shared rather than being located with the person leading the research, the action researcher acts as a support person and catalyst, assisting participants to identify and clarify concerns, enabling participants to explore innovative rather than traditional methods of inquiry, supporting the group to take ownership of actions and the implementation of plans (Koch and Kralik, 2006; Stringer 2007).

Flattening of power structures to enable lay researchers to resist oppression by academic researchers and dominant academic discourses (Maguire, 2006) is of particular relevance when participants are disadvantaged by loss of language. Aside from me, and in Phase 2, Debra, Research Group members had impairments of spoken language, reading and writing. Several had difficulty following spoken conversation. Most had varying degrees of difficulty with memory as language difficulties interacted with their ability to store facts and information or retrieve information with ease. Stringer (2007) notes communication, participation and inclusion as three critical pillars of quality in PAR. As the only group participant with unimpaired language and memory

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skills, my role as facilitator of the communication which underpinned participation and inclusion, was challenging and time-consuming.

Pragmatically I addressed this challenge by adhering closely to principles of good communication access which provide a ‘way in’ to equal participation and inclusion in conversations, meetings and services (Parr et al, 2008; Swinburn et al, 2007; Pound et al, 2007). Facilitating good communication access requires attending to interactions, documentation and environmental supports before, during and after all research interactions (Swinburn et al, 2007). Approximately one week ahead of sessions, group members were sent an agenda highlighting key areas for discussion and, where appropriate, questions to consider ahead of the meeting. All written communications were presented in an accessible or ‘aphasia friendly’ format, utilising, for example, enlarged font size, bullet points, clear headings and bolding to ensure text could be easily read (Brennan et al, 2005; Dalemans et al, 2009).

During meetings, accessible powerpoint slides were used to support communication and memory by:

 Presenting the meeting agenda

 Recapping and revisiting previous discussions and agreements

 Introducing areas for discussion and any questions central to the current meeting

 Presenting in an accessible format relevant new information  Presenting diagrams summarising progress and next steps

An example of slides used to support the meetings is given in Appendix N. Written and visual records enabled group members to request rewinding or relocating to a particular slide to clarify points of discussion or support recall of an issue.

Another key aspect of communication and memory support was the use of visual material, particularly diagrams, which served to recap where we were in the overall project and any specific aspects of the project we were involved in.

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For example, three key diagrams that were consistently available at meetings were:

 The overarching project diagram (fig 4.1, this chapter, page 86)  The model of friendship (fig 7.2, Chapter 7 page 209)

 A diagram indicating how different friendship products, developed across the course of a year, fitted together within the overarching plan for the Friendship Events (Appendix N)

Within a week of meetings I would produce a full set of notes documenting discussions and decisions and send these to all members of the group. The problem with minutes being too long arose as an issue early on, specifically how to document a meeting of over three hours in a full but accessible way, e.g. using larger font, supporting pictures and sufficient explanatory context. Not everyone wanted to read the full notes, leading to a compromise to keep the notes as full as possible (since most group members with aphasia found a recap of context as well as decisions helpful), but also to produce a one page summary of key points and decisions (see example of meeting notes, Appendix M).

Within meetings I regularly summarized decisions, agreements and actions verbally and often visually on flipcharts or diagrams to ensure we shared the same understandings of the last meeting and were at the same start point for the meeting in hand. Inevitably some members of the Research Group with aphasia had stronger and more confident voices within discussions than others. Some members, like me, had more ready access to language. As individuals with experience of both participating in and facilitating groups, group members with aphasia quickly respected the differences of pace, language ability and contributory style of their peers. As an experienced facilitator of groups of people with communication disability, I was aware of the requirement to employ certain facilitatory strategies. For example, in early meetings, I would create space for quieter members of the group to have an input to discussions by asking both a general ‘What do other people think?’ question or specifically asking an individual if they had any particular thoughts on an issue.

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I also had the role of bringing information to the group or, as one group member termed it, ‘acting as a conduit’ between the academic world and the world of group members. For example, I would occasionally summarise relevant academic literature on stroke and relationships or inform the group about the principles and processes of different research methodologies such as PAR.

4.6 Time

Time was a critical resource in relation to providing the communicative space to look, think and act together. It was always in short supply. In addition to the 22 Research Group meetings, I met with individuals from the group for one-to- one discussions as we prepared Friendship Event materials, developed presentations and worked on papers. These meetings were recorded with permission and notes created from the audio recording and my notes. These sessions provided a further audit trail of discussion and decision-making as well as a rich source of data for my research journals and personal reflexivity. Time spent together in the informal social moments over coffee before meetings, in the pub after meetings or, for example, travelling together to stations and conference presentations strengthened relationships, fuelled reflexivity and surfaced further contexts to consider power and relational ethics which are discussed further in the findings on doing PAR with people with aphasia in Chapter 10. A full list of project activities I undertook with research group members outside the 22 Research Group meetings is presented in Appendix L.