Table 5 Enablers and barriers for involving participants

Financial remuneration for people’s time; financial support for travel and accommodation

Running a business ‘limits me and my time’ [P15]

Living in rural areas and travel logistics a barrier to participation in face-to-face events

‘I’d like to be involved online rather than face to face because of travel difficulties’ [P6]

Learning and development opportunities for participants and researchers

‘if you tell me what would be useful, I could do it’ [P13]

Poor explanation of abstract concepts such as ‘involvement’, which can be jargonistic

‘there seemed to be confusion, or a lack of understanding of what this ‘involvement’ would actually look like’ (MS)

Small groups at events gave more people a chance to share perspectives

‘Small group’ discussions at the event ‘worked well’ (Study team member)

Self-doubt about their skills or knowledge mean they don’t think they could be involved

‘I’d probably ask a stupid question’ [P2]

Early notice of events

‘give me enough notice’ [P10]

Some people not comfortable being part of a face-to-face group

‘I get very uncomfortable in a group of people’ [P12]

Clear information about timings and time commitments, frequency of involvement and available support

Ensure ‘people are advised what’s going to happen at the workshop’ [P8]

Lack of clarity about expected time commitments

Being involved ‘depends on what’s involved and time’ [P1]

Clear information about purpose and expectations of involvement, feeling their involvement has consequences

‘What’s the endpoint – what’s the goal?’ [P11]

Unclear about what tasks they could be involved in

‘I don’t know how I could but willing to help’ [P13]

Independent facilitator when working in groups (either face-to-face or online)

I’d feel more comfortable if I had someone who was facilitating [P14]

Face to face discussions ‘dominated’ by more confident or knowledgeable people (Study team member)

‘Participants from professional backgrounds to some extent dominated some of the discussions’ (Study team member)

Short events ensure people do not get fatigued

‘any longer and I think fatigue would have dampened the enthusiasm’ (Study team member)

People feel they have limited time, are busy with work or social commitments

‘I don’t have a lot of time left in life’ [P1]

Having access and literacy in using computers and online tools

‘if I could negotiate [online discussions] I’d be happy to do that’ [P15]

Lacking access, literacy or trust in using computers, smartphones or online tools (including social media)

‘I’m hopeless with computers’ [P16], ‘I don’t have internet’ [P12]

A selection of flexible communication modes (such as face to face and facilitated online discussion forums)

‘I’d be happy to be involved – more online but if there was an occasional need to come into the city I’d be happy to do that’ [P3]

Only one mode of communication, such as expecting people to travel to events

‘online is often easier’, face to face only ‘as long as it’s not too far’ [P22], ‘travel distance is an issue’ [P20]

Involving people in research ethics and governance

‘ethics is the difference between right and wrong – you know what’s right and you don’t do what’s wrong’ [P18]

A ‘researchers know best’ attitude that doesn’t value the process of involving people (Study team member)

Researchers ‘don’t see the forest for the trees’ [P19]