Working together: experiences of people with aphasia as co-researchers in participatory health research studies

Figures & data

Table 1. Original studies (conversation partner evaluation study; friendship and aphasia study)

Title	Conversation Partner Evaluation Study
Key research question	Explore with people with aphasia their perceptions and experiences of aphasia and the Conversation Partner Programme; Explore with other key stakeholder groups their perceptions and experiences of the Conversation Partner Programme; Identify with all stakeholders evaluation criteria for the Conversation Partner Programme.
Methodology	Participatory Learning and Action Research
Co-researchers with aphasia	5 people with aphasia including MG
Research participants	25 people (people with aphasia, SLTs, undergraduate and graduate SLT students)
Research group meetings	18 meetings (approx. 3hrs duration) over 12 months
Involvement activities	Co-designing research questions Deciding who should be included in the study Co-generating and co-analysing phase 1 (individual co-researcher group) and phase 2 data(mixed co-researcher groups) Deciding which data was important to share in Phase 3 with UK group in Connect Co-designing research questions for phase 3 Co-analysing phase 3 data Agreeing and prioritising findings Evaluating involvement experiences Co-creating dissemination strategy Participating in dissemination to a range of stakeholder groups e.g., people with aphasia; members of the public; healthcare professionals; researchers; 3^rd sector organisations etc. Identifying future research priorities
Further details	Mc Menamin (2016)

Table 1. (Continued)

Title	Friendship and Aphasia Study
Key research question	How do working age people with aphasia experience and understand friendship
Methodology	Participatory Action Research
Co-researchers with aphasia	Eight people with aphasia including BG
Research participants	28 people with aphasia (18–65)
Research group meetings	22 meetings (approx. 3 hours duration) over 30 months
Involvement activities	Identifying research topic & question Challenging & discussing ethics and methods e.g., advocating greater involvement of people with severe aphasia and developing creative methods to do so Co analysing phase 1 interview data Creating and co-facilitating phase 2 Friendship Events to gather more data Co-analysing phase 3 interview data Prioritising and co-creating dissemination activities Co-delivering dissemination to people with aphasia and their friends and to health care practitioners Co-developing project website and follow up activities
Further details	Pound (2013)

Table 2. Authors’/researchers’ background

BG: I am 67, Married with two children. I was working for Westminster Council. 20 years ago I have burst aneurysm, when the children were nine and 11. I was lucky because my therapist introduce me to new charity called Connect. I think that saved my life. Connect did lots of projects, education program, research themselves and partners of other charities and local and national bodies. And I was very active with all the projects. And three years I was engage with Carole PhD. After Connect I was involved with a new charity is called Aphasia Re- connect. I am involved with administration of the charity, and one or two groups, e.g., women’s group.
CP: I have worked with people with aphasia since I trained as a speech and language therapist in the 1980s. Some of my favourite and most fulfilling experiences have been working alongside people living with aphasia and their families to develop and deliver new forms of therapy and support. For me working in close partnership with people who have aphasia is more meaningful, creative and fun. So in my PhD research I wanted to try to push the boundaries towards giving people with aphasia as much control as possible as co-researchers not just advisors.
MG: I am happily married with five children and three grandchildren. I am a person who had a stroke just before my 55^th birthday and every day I live with aphasia. I can understand what you say but talking, reading, writing, spelling difficult. I love all sport and gardening. I especially enjoy walking with my wife. I was a co-researcher in the conversation partner study with Ruth. The way we worked together was important. There was teamwork in the group. I will tell you what that was like for me doing PPI research. We had a lot to say.
RM: As a speech and language therapist and a clinical academic I have been privileged to work with people with aphasia and their families for over 25 years. My PhD was my first experience of using participatory learning and action research (PLA) to involve people with and without aphasia as equal members of a research team in all stages of a project. Through our shared decision making and co-designed processes we co-created new knowledge which resulted in the agreed and prioritised evaluation criteria for Conversation Partner Training. The research team developed friendships and opportunities for sustained collaborations.

Table 3. Interlinking themes

Theme 1	Involvement in participatory research processes: More than a “guinea pig”
Theme 2	Group process: “it’s us not them … completely different”
Theme 3	Flexibility and creativity: new ways to co-generate and co-analyse data
Theme 4	Personal transformations and transformative actions arising from the research: “the tortoise wants to be like the hare again”
Theme 5	Enhancing quality and meaningfulness: “you get more things out of it for more people”

Figure 1. BG and MG’s Top Tips for researchers

Figure 1. Continued

Mc Menamin, R. (2016). Evaluating conversation partner programmes: Perspectives of people with aphasia [Unpublished doctoral dissertation]. National University of Ireland.

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Pound, C. (2013). An exploration of the friendship experiences of working-age adults with aphasia [Unpublished doctoral dissertation]. Brunel University.

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