Table 1.
Identification of relevant aspects in co‐research and how these can be addressed in practice
| Co‐researcher | Aspects identified as relevant through the co‐researchers’ reflective diaries | Overall principle (ie how to address the aspects). The academic researchers should… |
|---|---|---|
| MD (lay researcher) | The lay researchers feeling worthy/motivated | Adopt a non‐tokenistic approach, build rapport/ foster trusting relationships, give back to lay researchers, keep lay researchers in the loop |
| Developing questions that are understood/acceptable to participants | Establish research roles (to each their won expertise), involve lay researchers as co‐authors in research outputs (ie publications and dissemination), give up control on research | |
| The lay researchers feeling confident to be of value to the study | Provide iterative training | |
| Managing sensitive situations with participants | Ensure safety of all involved | |
| Treating participants with dignity and respect | Select lay researchers who have the right skillset | |
| Avoiding a totally academic viewpoint (eg bringing out issues that might be withheld by participants) | Invite lay researchers to analyse data independently of academic researcher | |
| Reflecting on strength and weaknesses of co‐research through data analysis | Use transcripts of interviews and keep a reflective diary to derive learning points | |
| The lay researchers opening up too much/deflecting from interview purpose | Ensure that relevant info is shared and collected during the interview | |
| Identifying areas of relevance that may pass unnoticed to academics | Invite lay researchers to analyse data independently of academic researcher | |
| Eliciting genuine, non‐deferential responses from participants | Promote an equitable interview session where all involved are comfortable | |
| The lay researchers developing the confidence in academic meetings to use their own lived experiences to support or challenge research | Have an open mind and be prepared to step out of your comfort zone | |
| The lay researchers being able to bring out emotional thoughts, quality of life, and daily mundane problems that could be overlooked, if an academic is concentrating on other aspects and outcomes | Give up control on research | |
| MG (lay‐researcher) | The lay researchers approaching the interviews understanding the study | Select lay researchers who have previous experience of PPI in research |
| Ensuring the lay researcher is fully confident to make their contribution and meet the challenges of co‐research | Ensure resources are in place (eg for training, costs) | |
| Establishing a connection with the participants and using empathy and understanding to widen and deepen the participants’ experience | Select lay researchers who have the right skillset | |
| Creating an initial bond of trust with participants | Build rapport/trusting relationships | |
| Helping carers to open up | Promote an equitable interview session where all involved are comfortable | |
| Helping lay researcher further confidence in their skills and affirming their underlying motivation | Travel together to interviews (eg to brief and debrief) | |
| The lay researchers committing time away from home | Allow extra time for planning, ensure resources for lay researchers are in place | |
| Requiring great skills, experience and knowledge on the part of the lay researchers, particularly during the interview | Provide iterative training | |
| Academic team having an underpinning expectation of lay researchers meeting very high standards | Provide iterative training, have an open mind, ensure resources for lay researchers are in place | |
| Research participants’ investment in the study deserving a highly skilled interviewer | Provide iterative training, ensure resources for lay researchers are in place, promote interview session where all involved are comfortable | |
| Co‐research affecting the lay researcher emotionally | Ensure safety of all involved, ensure resources for lay researchers are in place, travel together to interviews (eg to allow time for debriefing/processing emotions) | |
| Academics undermining contributions of lay researchers in the research agenda, as they do not conform to ‘rigorous’ academic models | Adopt a non‐tokenistic approach, give back to lay researchers, have an open mind, step out of your comfort zone (eg challenge academic culture) | |
| CDL (academic researcher) | The lay researchers helping to make the research documents and the topic guide more language‐appropriate to the participants | Establish research roles and expertise, give up control on research |
| The lay researchers helping to identify areas which might be especially relevant to the participants’ experience | Establish research roles and expertise, give up control on research | |
| Ensuring an open and equal relationship between participants and interviewers | Promote an equitable interview session where all involved are comfortable | |
| Showing the participants that the research team really values the inclusion and empowerment of people with lived experience in research | Adopt a non‐tokenistic approach | |
| Establishing an empathic bond with the participants | Select lay researchers based on skills and experience | |
| The lay researchers helping to make the session less formal, thus creating a relaxed atmosphere | Build rapport/foster trusting relationships | |
| The co‐research team having a good demographic balance, which well suits the participants’ diverse range of characteristics | Select lay researchers based on skills and experience | |
| The co‐research team having a mix of personalities. which enhances data collection, as the participants were more likely to find a type of personality they were better matched with | Select lay researchers based on skills and experience | |
| The lay researcher having greater ‘situational sensitivity’ | Give up control on research | |
| Grasping different nuances of the interviews in data analysis | Invite lay researchers to analyse data independently of academic researcher, involve lay researchers as co‐authors in research outputs (ie publications and dissemination), give up control on research | |
| Containing academic researcher's bias in data analysis | Invite lay researchers to analyse data independently of academic researcher, involve lay researchers as co‐authors in research outputs (ie publications and dissemination), give up control on research | |
| Delaying data collection, as extra time is needed to agree on appointment dates | Get guidance from experts | |
| The lay researchers empathising and relating more easily with their own peers (ie the carer‐participants) than with participant with dementia | Promote an equitable interview session where all involved are comfortable | |
| Risk of carers revealing information to lay researchers out of the formal interview session | Ensure that relevant info is shared and collected during the interview, provide iterative training | |
| Agreeing on rigorous research protocols within the co‐research team, prior to contact with the research participants | Get guidance from experts, set up plans for collaboration |