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

ABSTRACT

Background: People with aphasia have been engaging with research in a variety of ways. There are few descriptions of how they are involved in participatory research methodologies and even fewer reports describe their perspective on participating as co-researchers.

Aims: To explore the experiences and reflections of two people with aphasia, BG and MG, on being involved in participatory research studies as co-researchers – the Conversation Partner Programme Evaluation Project and the Friendship and Aphasia Project.

Methods: Semi-structured interviews were conducted with two people with aphasia about their experiences of engaging in participatory research as co-researchers. Data were analysed thematically.

Outcomes & Results: Retrospective reflection by MG and BG resulted in five interlinked themes:

• Involvement in participatory research processes: “More than a guinea pig”

• Group process: “It’s us not them … completely different”

• Flexibility and creativity: new ways to co-generate and co-analyse data

• Personal transformations and transformative actions arising from the research: “The tortoise wants to be like the hare again”

• Enhancing quality and meaningfulness: “You get more things out of it for more people”

Conclusions: Participatory research methodologies encourage and support non-traditional methods and boundary crossing relationships between academic researchers and people with aphasia. MG and BG’s reflections and recommendations suggest possibilities for enhancing collaboration and equality within our research practices.

KEYWORDS:

• Aphasia
• participatory research
• co-researchers
• public and patient involvement (PPI)
• co-production
• group process
• insider perspectives
• consumer involvement

Introduction

In this paper, we draw on theoretical constructs and practical tools from the field of participatory health research (Chambers, 1994a, 2004) and aphasiology (Kagan et al., 2001; Parr, 2007; Pound et al., 2007; Rose et al., 2012). We provide a descriptive account with qualitative evidence of the process and experiences of people with aphasia acting as co-researchers in participatory research studies. Through our discussion and reflection, the authors create an argument for involvement. We highlight opportunities to co-create accessible research processes and partnerships across the research cycle.

Qualitative participatory research approaches

Participatory approaches are increasingly being used for empowering public and patient involvement and implementing co-design initiatives (Gaventa & Cornwall, 2006; O’reilly-de Brún et al., 2016). These approaches are based on the interpretive and emancipatory paradigms (Freire, 1970) and founded on the epistemological assumption that the centrality of involvement of public and patients’ experiential knowledge will enrich the quality, rigour and authenticity of the study being undertaken (Staniszewska, 2009). Research studies using participatory approaches are positioned at level 4 in the public and patient involvement (PPI) spectrum of involvement model (Irish Health Research Forum, 2015) described in (Isaksen et al., in press). The literature describes a range of participatory methodologies (International Collaboration for Participatory Health Research (ICPHR), 2013) including the two methodologies featured in this paper – Participatory Action Research (PAR) (Baum, 2006; Koch & Kralik, 2006) and Participatory Learning & Action (PLA) research (de Brún et al., 2017; Chambers, 1994a; O’reilly-de Brún & de Brún, 2010). PAR is a dynamic approach to creating new knowledge by participants and researchers collaborating over time in cycles of action and reflection. PLA draws on a range of shared, flexible techniques with which participants and researchers collaborate in generating and analysing data. PAR and PLA share a democratic ethos and are strongly committed to power-sharing between academic and lay researchers (Jagosh et al., 2012). In PAR and PLA, research partnerships are reciprocal and inclusive with shared decision-making and continuous reflection on research processes (Cornwall & Jewkes, 1995). Because participants are valued as equal partners, they are often called co-researchers rather than participants. The research team create participatory spaces to listen to each other and learn together through iterative research cycles (looking; thinking; acting) (Baum, 2006). In this way the co-designed research questions and project aims are addressed. The organic and iterative processes in PAR and PLA result in new relational knowledge that changes the way the research team view the world and themselves (Schneider et al., 2004).

Types of involvement within aphasiology

The value of using accessible communication techniques to involve people with aphasia as participants in therapy is well documented (Kagan et al., 2001; Pound et al., 2007; Rose et al., 2012). However, examples of involvement of people with aphasia as equal collaborators in research are still limited (Mc Menamin & Pound, 2019). Bringing contributors (with and without aphasia) together around a research table does not ensure that ideas, experiences and knowledge are valued equally or indeed understood. Table 1 describes the aims, methods and participatory research processes employed in the two original research studies, The Friendship and Aphasia study (Pound, 2013) and the Conversation Partner Programme Evaluation study (Mc Menamin, 2016). Both studies used participatory methodologies that are inherently dialogic in nature (International Collaboration for Participatory Health Research (ICPHR), 2013; Leung, 2004), co-constructing knowledge between participants and researchers and aiming to promote collaboration across the full range of research activities including:

• Shaping decisions about project development and design.

• Developing relevant research questions.

• Co-generating and co-analysing data.

• Identifying, agreeing and prioritising findings and recommendations.

• Suggesting and participating in dissemination of findings.

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)

Mc Menamin and Pound (2019) suggest that the conditions for achieving participative research, where co-researchers have a more consistent, long-term engagement with all aspects of the research, can be challenging within traditional academic research paradigms. For example, ethical processes, institutional culture, and funding practices typically favour a more linear, researcher-led process rather than early, sustained and iterative participation where researchers with and without aphasia are continuously planning, acting, reflecting and revising approaches together.

The aim of this paper is to explore the experiences and reflections of two people with aphasia on their involvement in participatory research. In this paper, BG, supported by CP, and MG, supported by RM: 1) share their experiences of involvement as co-researchers in the original studies (see Tables 1, 2) reflect on their personal transformations during and since completion of the studies; and 3) offer practical suggestions to all those wishing to undertake collaborative research involving people with aphasia.

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.

Methods

Participants in this study are the four co-authors of this paper. BG was a co-researcher on the Friendship and Aphasia Study working alongside CP. MG was a co-researcher on the Conversation Partner Evaluation study working alongside RM. MG and BG were anonymous in the original studies but expressed a preference to be identified by their own name for this paper. Table 2 introduces BG, CP, MG, and RM.

The authors without aphasia acted as the research group facilitators in the original sstudies, that is, Friendship and Aphasia study (CP) and the Conversation Partner Evaluation Study (RM).

MG and BG were invited to be interviewees for this project because a) they were co-researchers in the original studies (i.e., involved in co-design; data co-generation; data co-analysis and dissemination), b) had been involved in dissemination events after the original studies concluded, c) were able to participate in remote qualitative interviews at a time when face-to-face meetings were not possible due to Covid-19 restrictions.

Data collection

For the purpose of this paper, which focuses specifically on the reflections of BG and MG, CP and RM reviewed research data and fieldnotes from the two original studies. They highlighted key moments in the original research studies where co-researchers with aphasia (including but not limited to BG and MG) explicitly reflected on experiences of being involved in research as co-researchers. CP and RM developed a topic guide (see Appendix A) to review and probe these areas further with MG and BG.

Relevant notes, images and minutes of the meetings of the two original studies were accessed and shared with BG and MG prior to the interviews, enabling stories, examples and quotations from this previous research to support conversation and memory. CP reviewed the experience of being involved in the Friendship and Aphasia study with BG over two Zoom meetings. Similarly, RM reviewed the experience of being involved in the Conversation Partner Evaluation study over two telephone meetings with MG. All conversations lasted approximately 60 minutes and were recorded and transcribed verbatim.

Data analysis

CP and RG reviewed the data generated in the conversations with MG and BG. Using principals of thematic analysis (Braun & Clarke, 2013), we extracted key themes common to both studies and sent these to MG and BG. RM had a final meeting with MG (via phone) and CP met with BG (via zoom) to review and clarify these themes and examples and based on our findings, elicit key learning and recommendations for participatory research with people with aphasia. As we were unable to have face-to-face meetings during the preparation of this paper (due to COVID 19 restrictions) we do not claim that this new data has been rigorously co-analyzed, but rather is the result of an iterative layering of conversations between co-authors.

Carefully fostered relationships of trust, familiarity and challenge are a cornerstone of participatory research (Koch & Kralik, 2006) and we acknowledge the pre-existing relationships between MG and RM and CP and BG. These underpinned our pragmatic approach to eliciting, analysing, reflecting on and writing up data for this study. We acknowledge the challenge of balancing the perspectives and voices of authors with and without aphasia in this endeavour (see limitations below).

Findings

Five interlinking themes were apparent from the interviews with MG and BG (see Table 3 below). These often cross-referenced or expanded upon experiences expressed by other co-researchers with aphasia in the original projects. For example, in preparation for her interview BG reviewed summary meeting notes from the original Friendship and Aphasia study and referred to these to help her express or elaborate upon her own reflections. Therefore, we have occasionally included illustrative quotes from the original studies for context. These can be found in the original studies (Pound, 2013; Mc Menamin, 2016) and are identified here by using the pseudonyms used in the original studies.

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”

Theme 1) Involvement in participatory research processes: more than a “guinea pig”

Both research groups acknowledged the novelty of the methodological approach. BG had previous experiences of interview-based research with students, clinicians and researchers while both BG and MG had experience of Speech and Language Therapy group interventions. BG contrasted being involved on the periphery to being involved on more equal, democratic terms in participatory research.

‘the other research … it’s like guinea pigs … they tell you what is about and really you can’t change it.’

She described how being involved from the outset, before the key focus of research had been determined enabled her to feel more attuned to the origin and importance of the research topic. Members of the friendship research group described the nature of decision-making together as being non-linear but “like a shoal of fish”, travelling along together then responding to a change of direction “coming from within the group”. BG contrasted this form of direction from within to “feeling on the outside” in many of her other non-participatory experiences of research:

“all those [research experiences] are kind of helicopter.”

In terms of levels of participation, she contrasted previous experiences of more cursory, light touch consultation with having a greater sense of control:

‘Having control and being given the reins … not about consultation it’s about us steering it.’ (BG)

The sense of being all in it together and having ownership of the direction of the research was echoed by MG and members of the conversation partner research group:

“We were all on the same course – what we wanted it came in a circle.”

Both MG and BG reflected on a qualitative difference between being a participant in a group led by someone else and a process shaped in more egalitarian, democratic ways:

‘I mean you [CP] … you’re there you, are there but you’re not leading the group for the talking. The structure is there but we decide whether is relevant or not relevant.’ (BG)

‘We had time to listen to other people in the group: it was democratic’ (Neil)

Both research groups reflected on the mixed emotions of becoming involved in something that had no pre-determined direction or outcome. However, initial unease about not knowing how they might be involved soon turned to enjoyment and excitement of being involved at the core of the thinking and decision-making.

‘I wouldn’t like missing the meeting because I felt I was part of a team and if you didn’t show up you’d be letting your team down … so that why kept it going.’ (MG)

‘every month was so excited when I was going there. I don’t think I missed anything because is exciting.’ (BG)

‘That’s why creative … because the thinking together. You allowed us to go everywhere … outside the box.’ (BG)

‘I feel elated. I didn’t think we had so much to say … but I’m happy that we did.’ (MG)

Co-researchers in both groups valued the opportunity for intellectual engagement and being appreciated for their intellect.

“Is like elite group [laughs] is different!” (BG)

‘Well … I think all of us I think we thought … well you got the idea to use us … and I think we thought wooo … you think we’re worth it … and we thought you’re worth it!’ (BG)

‘It shows what we can do. We are not fools … we are very important.’ (MG)

MG used a powerful image of a bog and stacking turf to reflect on the added value of thinking and working together as a group rather than an individual:

‘On your own you’re some good in the bog, when you have more people to help you … much better.’

However, as well as experiencing the excitement of collaborative thinking, taking an active part in the thinking and ownership of decision-making could feel intimidating:

‘the first meeting we were so involved … and scared … because we have the responsibility … I have responsibility because oh my God maybe goes nowhere!’ (BG)

Theme 2) Group process: “its us not them … completely different”

Both MG and BG highlighted the importance of the group process. They talked about how spending time together and thinking as a group helped build a sense of mutuality and shared purpose. MG agreed with the reflections of his co-researchers in the conversation partner study who highlighted feelings of solidarity and camaraderie:

‘I think it’s great to see the seven of us … we can talk, you can talk about different things and we’re just ordinary people at that stage.’ (Anne)

‘It’s nice to know you are alive … the camaraderie in the group.’ (William)

MG explained how group cohesion and respect developed over the first few meetings of the conversation partner research group.

RM:

What was it like to be a member of the research group?

MG:

Great I didn’t think that at first but it came out then but very good … I was never involve with research before that so I didn’t know how good … how we … how it were … .when we came in for the first and second meeting were kind of in awe of each other but what stuck out for me – we all came together yourself, the whole lot of us like we were under the one cloak.

For BG, the strong relationships that developed across the course of the study were not only productive but led to lasting friendships:

‘We have a lot in common … obviously the project but other things as well. We have a lot in common. We talk about other things as well like before and after [the research meeting]. Is just like seeing your friends again … is really nice!’

Positive working relationships and shared purpose also led to friendships in the conversation partner project:

RM:

We developed friendships didn’t we?

MG:

Yes, yes you have to friendship to have a team.

Both groups commented that it was not just the purposeful, creative thinking but the fun and laughter that cemented their commitment to the group and the research:

‘yeah good fun we had good fun alright still it was hard work!’ (MG)

BG reflected how whilst many of the positive benefits from the group could be experienced within therapy groups or conversation groups, she also noticed a different dimension to the participatory research group. Aside from intellectual stimulation, she appreciated an additional level of control:

‘The project is sort of intellectual … not just conversation group.’

‘I mean you [CP] … you’re there you are there but you’re not leading the group for the talking. The structure is there but we decide whether is relevant or not relevant and I think we have like conversation group there is very structured but we [the research group] some structure but in a different way.’

MG also reflected on his experience of the research group compared to his experience of participating in Speech and Language Therapy groups:

RM:

Was the therapy group different from our research group?

MG:

Yes because they [therapists] didn’t ask you your thoughts on it [therapy] … you know … maybe we wouldn’t be able to talk about it … I went there I couldn’t talk much.

RM:

… so in the research group you felt you could talk?

MG:

Yes, Yes and we did talk.

BG also differentiated participatory research qualitatively from her previous experiences of taking part in focus groups where she perceived the drive and outputs to remain firmly in the hands of the external researcher:

‘It sounds like people out there not us it sounds like the … that research with participative … a bit like focus group but is not at all … that’s what I mean … because focus group is you know one person decides blah blah blah and get loads of people then then talk and the research person put all the things together and learn … so is different.’

Theme 3) Flexibility and creativity: new ways to co-generate and co-analyse data

Including people with more severe aphasia

The Friendship and Aphasia Research group were very strong advocates for people with more severe aphasia to be involved in the project. The research group feared that people with little or no speech would be disadvantaged in identifying who their friends were and providing detail on the nature of their relationships. So, in phase 1 of the study, while debating interview methods, they suggested that selecting and manipulating different coloured stones might be a more accessible way of describing the range and dynamism of their friendships. BG had previously experienced the use of the stones in her own therapy and valued the support they gave when being unable to use spoken language:

BG:

And I think use the stones for me when I had therapy … cos I didn’t speak then

CP:

What did you find useful?

BG

Well, it was easy … like you put your stone wherever you want and you explain where they are.

She agreed with other members of her research group that the physical presence of the stones and their different shapes, sizes, textures and colours helped to externalise “discussion” of diverse friendships as well as to make experiences more visible to others:

‘It’s absolutely physical … it does not require language. You can see the outcome. It’s individual seeing. It’s individual … and democratic.’ (Binda)

In the Conversation Partner Evaluation study everyone was welcome and nobody was excluded because of severe aphasia. A range of PLA data generation techniques were used to co-create data in response to the research questions. The co-researchers used PLA techniques (McMenamin et al., 2015a, 2015b) to co-generate, organise, and display data. The materials were flexible and visual e.g., charts, coloured stickie notes, pictures, written words etc. MG reflected on the use of colour and charts to capture ideas and support memory of who said what during data co-generation and co-analysis:

MG:

… that was a great idea and we all had our own colours … we could look back and see what was said and who said it … I have to go back and look on paper and look what somebody said and it would jog my memory to reply to that what was said.

Bringing in different methods of gathering data also helped keep interest and momentum going:

RM:

“ … do you remember when we brought in the symbols?”

MG:

“yes that was I think that showed the character of the person I think so … we might have been getting bogged down so bring those in [the symbols] … at that time gave us a new lease of life to go on and get the work done.”

Data generating in group storytelling

Both research groups recognized the challenges of one-to-one interviews and the way that participatory group discussion and the process of story sharing could generate data in a different way. MG agreed with his peers:

‘Interview is one way – not really sharing my experiences.’ (David)

‘I wouldn’t agree with the interview technique – in the group there is more discussion and debate … there was teamwork in the group.’ (Neil)

As a research facilitator, BG also felt she was more able to participate in data generation through small group work than awkward one-to-one encounters:

‘I’m not very good at one to one I’m good at a few people … like three people I’m not good at one to one.’

In Phase 2 of the Friendship and Aphasia project, the research group decided that an event for others with aphasia which prioritized storytelling and group conversation on the topic of friendship experiences might elicit new data against which to test a preliminary model of friendship.

‘I remember we want to see if we have everything … like the trees of friendship you know … so I we look out to see if people have experiences different we have.’ (BG)

The group developed a creative programme of video stories, poetry, dance and artwork on the theme of friendship. Through sharing and comparing different stories, The Friendship Events helped the research group to clarify and elaborate on some of the themes. For example, after hearing the experiences of those who came to the Friendship Events and reflecting together on the tone of the stories, shared “humour and creativity” was added as a theme though it had been less prominent in the phase 1 interviews.

Supporting co-analysis through visual methods

In the Friendship and Aphasia study, co-researchers with aphasia discussed the best way to “get our hands on the data”. An attempt at reviewing segments of transcripts was rejected after some members of the group found reading the interviews linguistically too demanding. Others found looking at verbatim transcripts distressing as it focused attention on their own dysfluent speech. Through trial and error the research group started to use a mindmap as a way of presenting, summarizing and then interrogating different themes and sub themes. The group named this mindmap the “Forest of Friendship”, metaphorically representing both the ease of getting lost in the messy entanglement of data and the challenge of finding a way through the complex landscape of friendship. Together we named and moved and visually re-positioned the branches and the twigs of the mindmap until it seemed to hold an authentic description of our own experiences as well as those of the diverse people with aphasia who had taken part in the project as research participants.

BG described this process of analysis and interpretation using the mindmap:

CP:

would it be fair to say the mind map gave you a way to talk about the data … the stories?

BG:

Yes, yes because you can see … everybody is different, that’s one of the best things about this I notice all the time with the research … we all different and that’s why they have big branches and trees and twigs … because you fit there, there, there but not there … this way and that way … and obviously is change as well … you say ooo I want a new branch or not.

Having discussed the data, reordered and fine-tuned some of the themes, BG and co-researchers with aphasia ultimately reflected on a sense of ownership and a sense of pride in the final product, a nuanced model of friendship:

‘we are very on the group with you and then us we feel the same we feel the same like completely … not you’re master and we troopers … we feel the same because we invented the bloody thing. All of us, not myself or me or you.’

In the Conversation Partner Programme Evaluation project there were similar challenges to managing and finding coherence amongst large volumes of data. The research group used a “PLA interview” technique (O’Reilly-de Brún et al., 2015) to review and interrogate the data which included visual and verbal materials. MG reflected on the challenges of co-analysis and synthesis:

RM:

Were there things that were challenging or difficult?

MG:

Yes, Yes, I wouldn’t say difficult. We got over all the difficulties … challenging yes … yeah … headings [themes] were challenging … we wouldn’t know what we looking for … so that is challenging enough to get it … get it [data] into your mind, process and get it out.

Arriving at agreement within the PLA research group about emergent themes involved iterative discussion and negotiation but the flexible materials, charts, colours, pictures and symbols supported co-researchers with reaching consensus. MG reflected on the process of reviewing the co-generated data to sort, organise, and analyse it into meaningful groupings/themes in a democratic way during co-analysis sessions:

RM:

What do you remember about trying to find the connections and the links and put the stickies together in groups?

MG:

what was hard with the stickies trying to get smaller groups that was good fun! [laugh]

RM:

that was a lot of work because we were trying to come up with something we all agreed on.

MG:

It was yea but eh … when it came to one question all the sickies there maybe [someone] might have 6 or 8 stickies [representing different ideas] and somebody else might have 5 or 6 or 7 so the whole group want to get the one … bring it down to one heading [agreed theme] thereabouts somebody said we have to vote one by one and see what’s the best one we thought …

Following the categorisation process the group suggested to vote on the most important themes using a PLA Direct Ranking technique (McMenamin et al., 2015b). This technique supported the team to identify and agree priorities within the group. Votes (voting tokens were coloured paperclips) were cast [10 for each member of the research team] according to a single agreed ccriterion, that is, “most important Conversation Partner Programme (CPP) evaluation criterion to least important evaluation criterion”

MG:

… so I think we had five [themes] whatever we voted anyway … whoever got the most [votes] that be on top of the list … we got paperclips [voting tokens] I think.

RM:

… looking back on it do you think the voting was a good thing to do?

MG:

yes, yes no no arguments about it [prioritisation of agreed themes] you know yes I think so or else we’d be there all day.

RM:

… yeah (laugh) Do you think it was democratic?

MG:

yes indeed it wasn’t me or you or somebody else said that [was the most important CPP evaluation criterion] so why would his idea got the vote.

Theme 4) Personal transformations and transformative actions arising from the research: “the tortoise wants to be like the hare again”

In both studies, co-researchers with aphasia reflected upon the range of benefits they experienced personally from being involved in the participatory studies. Both the process and the topic of the research were described as contributing to these changes.

Some of the benefits related to improved communication skills and confidence:

‘make me talk – the research made me talk.’ (MG)

MG expressed how being involved in the serious work of the group gave him increased motivation to improve his communication skills and newfound confidence in speaking out. He brought the symbol of a tortoise to the group to express this change:

‘I think the tortoise wants to be like the hare again … All of us we’ve said, we can speak our mind here. No interruptions at all. So that’s good.

I’m not afraid to go into company and if I wanted to say something I find it much easier and quicker to put up my hand and say something than before [the research group] … I think I was more confident … I wouldn’t be afraid after that [research group] chair a meeting before that wouldn’t even go to the meeting.’

For BG, being centrally involved in the thinking of the research gave her a more authoritative voice both to tell others about the research and campaign for change for others with aphasia.

“Knowledge makes you feel secure, but I want revolution!”

BG and MG also shared strong recollections of the improved sense of wellbeing experienced by themselves and their fellow researchers through being engaged:

‘It is given me a lot of strength this group and just the whole process. And I feel a lot better about myself.’ (Melanie)

‘Doing this project has enriched me. Kind of immensely and … I wanted to use a different word than confidence … its just … empowered me.’ (Binda)

‘Participating in the group it makes me feel better … makes me feel a bit of sanity to myself you know.’ (Neil)

BG summarised the range of positive impacts she experienced personally from being involved:

‘Well … I mean … the confident … very good cos I mean we did one or two presentation with different audiences … so like I feel very confident … esteem yes, identity yes … I feel more and more … I’m there I’m fine.’

Positive outcomes from PAR may bring about transformative change at personal and social levels. Most members of the Friendship and Aphasia research group talked about a fundamental shift in awareness about the importance and value of friends and friendship. BG reflected, for example, how she no longer took treasured friendships for granted:

‘Well, I think … my friends like close friends whatever I was I was what’s called granted … so in a way my thought is really different. I really, really I’m so happy that I have this friend.’

Along with other research group members active in peer support groups, BG reported changing some of their own behaviours as a result of being involved in the PAR study. For example, when facilitating peer support sessions, she now spends more time enquiring how people with aphasia are managing to stay in touch with old friends or if they are facing any friendship challenges.

Theme 5) Enhancing quality and meaningfulness: “you get more things out of it for more people”

In both studies, the research groups felt they had played an important role in creating new learning which would be useful to others and make a positive difference for other people living with aphasia.

For MG and his co-researchers, this was part of the motivation for getting and staying involved:

‘We knew … I knew we did something positive.’ (MG)

RM:

Do you like the participatory research?

MG:

Oh yes yes, you have more craic and you get more things out of it for more people!

Commenting on how to enhance the quality of research and better support the learning of healthcare workers, both BG and MG highlighted the imperative of including people with aphasia:

‘If you want something to help people with aphasia you have to involve them in participative research … otherwise it’s no good.’ (BG)

‘People with no aphasia - how can you talk about something when you don’t know what you’re talking about? You don’t know what it’s like for the person who has it.’ (MG)

BG distinguished the collective idea generation of participatory research from traditional academic led research where the outsider perspective can dominate in unchecked ways:

‘With the interviews one to one and they [academic researcher] say this is it, this, is our conclusion … that’s why you need not one to one but other people in research … a few people at least … you have more and more and it’s not just your idea … the researcher person but their idea as well.’

Discussion

In this paper, the authors sought to share their experiences of involvement from their work as co-researchers during the Friendship and Aphasia study and the Conversation Partner Evaluation study and from their reflections on this work following completion of the studies. The five themes identified are drawn together in this section and discussed with reference to literature from other “hard to reach” groups and the delicate dance of power and control that appears to permeate all themes. Recommendations are suggested by BG and MG (see Figure 1 below) for researchers interested in conducting participatory research with people with aphasia.

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

Figure 1. Continued

Participatory methodologies such as PLA and PAR, whilst sharing many characteristics with other qualitative methodologies are differentiated by their requirement of sustained, critical reflection on power and shared decision-making as an essential part of the research process (Mc Menamin & Pound, 2019). For example, establishing the culture and conditions for co-investigation and authentic thinking together is a cornerstone of Freirean philosophy underpinning participatory research approaches (Freire, 1970). New knowledge is generated through cycles of dialogue which are both creative and liberating. Achieving this in practice where research leaders, facilitators and editors are those with intact language and time is limited and challenging. MG and BG highlight the need for careful attention to structure, facilitation and communication process as an important prerequisite to feeling authentically involved and in control. But their reflections highlight the need for research processes that attend to and move beyond good communication access. For some population groups, active participation in research is particularly difficult. Migrants, for example, often experience exclusion because of communication barriers and challenging socio-economic living conditions (de Brún et al., 2017). Frequently, when people from this population group are included in research it is often tokenistic rather than collaborative (Domecq et al., 2014). Identifying methodologies that promote access and meaningful involvement in research is a challenge that might be overcome with “bottom up”, participatory approaches (Macaulay et al., 1999; MacFarlane et al., 2014).

Narratives of academic participatory researchers who work alongside co-researchers with disabilities confirm that meeting aspirations of shared power and control remain highly challenging despite our best intentions (see McMenamin et al., in press; Shiggins et al., in press).

Work on inclusive, participatory research with people with sensory impairments reveals similar challenges as well as suggesting opportunities for enhancing engagement and participatory practice. In a systematic review of research where people with learning disabilities were involved as co-researchers, Rix et al. (2020), highlight that whilst many studies endeavored to engage people with sensory impairments as co-researchers, because participatory research remains dominated by speech, it is the funders and academics who retain most of the control. Rix et al.’s (2020) findings about research with people with learning disability resonate with comments by BG and MG about the evolution of their aphasia research groups over time and the importance of attending continuously to relationships, honesty and tone:

‘Power negotiation cannot be about a singular action. This points to the need for ongoing questioning, with time being given to developing voice and relationships, and people being honest about their experiences.’ (Rix et al., 2020, p. 1044)

In differentiating participatory from non-participatory research, Rix et al. (2020) examine the different boundaries that exist in participatory research. These can challenge more traditional notions of boundaries between academic researchers and disabled people who collaborate as co-researchers.

MG, BG, and their peers with aphasia consistently highlighted the importance of the personal dimension of relationships within their research projects. MG described the personal dimension as “getting to know the character of the person”. They valued time spent establishing trusting relationships, enjoying time in the company of co-researchers with and without aphasia. In many cases, they noted transitions to friendships within the team and with the academic research leads.

Discussing the challenge of authentically involving people with learning disabilities in co-analysis, Seale et al. (2015) reference “the new and messy spaces” (p. 483) that academic and lay researchers need to explore to progress participatory practice. Both studies cited here reiterate how time spent fostering relationships (see Hersh et al., 2021) and finding comfortable ways of being together in this messy space is a critical underpinning of participatory research with people with aphasia (Mc Menamin & Pound, 2019).

A second feature of boundary crossing and levelling the participatory playing field where communication inequality exists is engagement in methodological innovation (see Horton et al., 2021; Nind & Vinha, 2016). O’Reilly-de Brún et al. (2016) highlight the importance of choosing methods that create “safe spaces” for co-learning to occur:

“Methods for developing research partnerships need to be supported by a relational environment of trust and mutual respect, generating safe spaces where stakeholders feel secure and empowered to actively participate”. (O’Reilly-de Brún et al., 2016, p. 4)

This resonates with the “Top Tips” of BG and MG presented in (Figure 1).

Both our studies explored new ways of co-generating and co-analysing data, often drawing on embodied, physical ways of manipulating data alongside more traditional, verbal discussions. Encouraging embodied ways of knowing and interactions that dwell in openness and uncertainty can support new ways of knowing (Todres, 2007). Co-researchers with (and without) aphasia in both studies frequently expressed the challenge of working with overwhelming volumes of data. BG and MG reflected on the need for very clear parameters, processes and communication support needs for engaging with data. But once the conditions for “feeling safe” had been established, they and other members of their research team embraced the uncharted territory in creative ways. Colour, movement, and metaphor in an established safe space imbued data “discussions” with energy and excitement. These more embodied methods of exploring the data in open ways resonate with the notion of the “while of participation” where participatory practice is as much about the manner in which participation takes place as the activities (Rix et al., 2020).

Limitations

The authors acknowledge the limitations in the process and scope of this research. The authors with aphasia acted as co-researchers in the original studies which were completed several years previously. Despite CP and RM using relevant notes, images and minutes from the original studies to support memory recall and conversation, it is possible that some involvement experiences were lost with the passing of time. BG and MG retrospectively reflected on their experiences of involvement in iterative conversation with CP and RM. Data collection was conducted using the online platform Zoom (CP and BG) and the telephone (RM and MG) due to COVID-19 constraints on meeting. This mode of engagement was very different from the participatory research methods used in the original studies where BG and MG expressed their perspectives using a range of creative methods, for example, pictures; symbols; drawing; words; dance etc. The restrictive capacity of online and telephone interviews as a method of data collection in this study may have limited some aspects of conversation and reflection between CP and BG and RM and MG. Finally, MG and GM are individuals and while both commented on the experiences of other co-researchers during their interviews, the authors make no claims beyond their individual perspectives. The key learning and recommendations for PPI in qualitative participatory research with people with aphasia may not be transferable beyond this study.

Recommendations

Jagosh et al. (2012) highlight the importance of partnerships for health research and having reviewed the content of this paper, MG and BG offered a series of ideas and tips for researchers wishing to engage in or enhance research partnerships with people with aphasia. While all authors acknowledge that the suggestions presented in (Figure 1) are not representative of the ideas and/or experiences of the entire population of people with aphasia, we do believe that consideration and implementation of these “Top Tips” will enhance PPI initiatives and outcomes in future projects.

Conclusion

The complexities of accessing and involving hard-to-reach groups in research are widely reported in the literature (MacFarlane et al., 2014; Teunissen et al., 2017). However, involving these hard-to-reach groups is critical to the development of relevant “bottom-up” PPI/consumer involvement (Ali et al., 2006) research. In this study, two people with aphasia with direct experiences of participating as co-researchers reflect on participatory research. Their views on the practicalities, challenges and benefits of working alongside co-researchers with and without aphasia emphasise important opportunities for increased collaboration and alternative relationships within aphasia research.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Correction Statement

This article has been republished with minor changes. These changes do not impact the academic content of the article.

Appendix A

Appendix A:Interview Topic Guide

Questions to talk about:

What was it like to be involved in participatory research?

• How was our research different from other research groups?

• What made you feel involved in the research?

• What kept you motivated?

• How did you feel at the beginning?

• How did you feel at the end?

What was it like to be a member of the research group?

• What did you enjoy about the group?

• Any challenges / difficulties?

• What made you feel more / less included?

• How was our group different from therapy groups

What worked well in gathering / talking about / analysing the data?

• Charts

• Stickies

• Symbols

• Group discussions

• What stood out

• What made it easier / more difficult

• Other

Did anything change for you (as a result of being a co-researcher)?

• Communication/ conversation

• Confidence

• Identity / Self esteem

• Other

Any new thoughts about conversation/friendship as a result of being involved in the project?

What do you think were the benefits to others (of strong participation by people with aphasia)?

• New messages and ideas about 1) the conversation partner programme/friendship and aphasia: 2) participatory research

• Do you have any ideas/thoughts for health care workers?

• Do you have any ideas/thoughts for researchers

• Do you have any ideas/thoughts for people living with aphasia and their families?

Any other comments to share about your experiences of involvement in our research?