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Researchers' experiences of patient & public involvement

Feelings about involvement and emotional impact

Patient and public involvement can be an emotional experience for both the people who get involved and the researchers. Researchers’ feelings about involvement will affect how readily they adopt it as part of their normal practices and how they go about it.

Positive experiences
A common theme in the interviews with researchers was how enjoyable and rewarding involvement could be. They talked about feeling energised, inspired and enthused, having fun, and feeling it made their research more worthwhile, relevant, and interesting. Sergio said, “And most of all it has been a pleasure.”

 

Involving people ‘makes you feel good about what you do’. Stuart finds it moving, enjoyable and useful.

Involving people ‘makes you feel good about what you do’. Stuart finds it moving, enjoyable and useful.

Age at interview: 59
Sex: Male
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I mean the answer is yeah I would say that, it makes you feel good about what you do. I mean I’m, I've been one of those fortunate people I come to work with a desire to come to work because it’s fun and I enjoy it but like many people I like to feel that what I do is useful and the more engagement I’ve had with members of the public the more A) the more fun it is but also more useful I feel the stuff we do is. Because I believe that we’re actually doing research that may make a difference one way or another and you know, you can’t feel better than that. 

And indeed I have to say that I spoke to you earlier about having had some of the members of our family faculty from, you know, [research unit] spontaneously talking at a, a meeting with trustees from the charity which moved me to tears because of the positive things that they said. And that makes you feel good about your life, yeah.
 

Involving people ‘makes doing the research far more fun’ and ‘makes it all very real and meaningful’.

Involving people ‘makes doing the research far more fun’ and ‘makes it all very real and meaningful’.

Age at interview: 48
Sex: Male
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I think for me, it makes doing the research far more fun. I mean fun's a huge part of the way we go about involving people - you know, people don’t come along to be glum. 

I think families like working with us because we try and make it a convivial environment; we have a good laugh and treat them as experts in their own lives and -

So I think there's a big impact for us, it makes it all very real and meaningful and, like I say, fun. The most amazing impact is seeing how; hearing some of our parents talk about their experience of being involved with us. And that’s very moving really because they’ve often been quite disempowered through becoming parents of disabled children and they had significant struggles and hearing them talk in presentations or even on TV recently, you know, about how being involved in research has really helped give them their self-confidence and being, you know, feeling like they make a difference to – for the benefit of other families and, you know, it's amazing.
 

Fiona finds involvement ‘a very rich part of my life’ and never stressful.

Fiona finds involvement ‘a very rich part of my life’ and never stressful.

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With work being stressful and so on – is PPI ever stressful? Or what are the sort of emotions associated with it?

No. No, I suppose I would get stressed about PPI if somebody was in my face with totally the opposite attitude to me. And I would just tell them to go and get lost because I don't have time for those sort of conversations anymore. But no, I've never been stressed about PPI and I really look forward to the meetings that I have, because do you know what? We always have a laugh, and I don't have a laugh with work colleagues as much as I do with those individuals, so that's actually a very rich part of my life.
Challenging experiences
At the same time, researchers could also find it ‘stressful’, ‘draining’ and ‘exhausting’. Catherine said it could be ‘nerve-wracking’, Alison described ‘occasions where I’ve been made angry or frustrated’, and Vanessa commented, ‘It is emotionally draining… sometimes it’s just challenging being challenged.’ There were several reasons why it might feel draining and tiring, including anxiety about not doing it well; dealing with tensions and conflict; feeling threatened or scared; and feeling personally responsible for the feelings and expectations of people getting involved.
 

Sarah A feels very responsible for the people who get involved and feels guilty if progress with the research isn’t as good as they hoped. It’s an ‘emotional burden’.

Sarah A feels very responsible for the people who get involved and feels guilty if progress with the research isn’t as good as they hoped. It’s an ‘emotional burden’.

Age at interview: 32
Sex: Female
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Are there emotional consequences associated with PPI?

Yeah I think so. I think, I was saying just how I like the fact that my PPI partner is on at me to take this forward and to move forward and to do stuff with it. When I'm feeling like my 'To do list' is endless I don’t like that voice you know and it then feels, but it feels different to not be progressing as well with that as to not progress well with other projects – you know there's other projects that I, you know, need time throwing at them but it's kind of almost a strategic thing and it's, "Oh that needs that and that needs that," whereas this feels like, it feels a bit more personal because there is a person attached to it and, you know, I feel quite guilty sometimes if I'm not spending time on it, or feel guilty like, oh have I, you know have I not done the right expectation management, that you know, does she think this definitely is going to get funded when it isn’t and a lot of the time I think that’s inaccurate, I think actually she's very pragmatic about things and but it is a bigger pressure I think, and that I don’t think gets acknowledged at all. 

And that again I'd almost feel a bit daft kind of, you know, if you're sitting there talking about, “OK, so I need to do this for my CV and this for my CV”, and you go, “Well, PPI will look good on my CV”, but also I just feel really bad about it you know, that sounds a bit silly or I don’t think that’s going to sell it to, you know, my supervisors. But that’s why ideally I think I would like for it to be acknowledged that, you know, maybe it's a good thing that I'm trying to continue this relationship with this person; maybe it's a good thing that I'm trying to sustain that involvement and that collaboration and not just say, "Well you know my time on this is done so I'm going to leave you now." And I think you feel, I think I now feel a responsibility as well to people who I've done PPI with that then if they go and do PPI with another group I worry that group isn’t going to you know treat them right almost which sounds really silly but you sort of feel this responsibility but, you know, they're not going to collaborate them in this way or they're not going to make sure they pay their finances on time and stuff like this and so you end up then feeling responsible for them in a way that I wouldn’t feel responsible for a colleague on another project going to another team. 

Like I say I don’t think that’s intrinsically a bad thing. I think there are elements of that that are good. You know ideally I like having that more personal relationship but yes it does have a certain sort of emotional burden to it I guess which I don’t think gets acknowledged or I don’t think they really get time to sort of explore that. But, you know.
 

Catherine feels some of her colleagues have ‘pigeon-holed’ her as an expert in PPI but she’s often anxious about whether she’s doing it well.

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Catherine feels some of her colleagues have ‘pigeon-holed’ her as an expert in PPI but she’s often anxious about whether she’s doing it well.

Age at interview: 29
Sex: Female
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I feel comfortable with the idea of doing it and I think it's an important thing to do and I'm happy to be involved because I think it's useful. So on that side of things I am comfortable doing it, but on the other hand, I don’t, I’m by no means an expert at all on it, and so it does feel a bit like I'm leading something without knowing exactly what is wanted. Although I guess, at the end of the day, I'm free to do it how I want within the funder’s kind of regulations. But it would be nice to – yeah, I guess I am a bit anxious how it's going to work out. I don’t know how much they're going to be able to contribute or how I'm going to negotiate that, the relationship between them and my colleagues and make sure that everyone's happy. So yeah I'm kind of waiting to see. I don’t feel as well that comfortable that since doing it once I've now been pigeonholed a little bit into the PPI person, so I've been asked to do it another one or two more times, and so I don’t want to become the PPI person and end up doing it a lot for all different studies – definitely not.

Are there emotional consequences to you - like is it sort of, has it been stressful so far in your experience? Is it something you’ve been anxious about?

It's a tiny bit nerve-wracking to be leading something that you don’t have expertise in, yeah. So in that way, yeah, I do feel the stress of that, being responsible for something that I don’t feel that expert at all in. But then I don’t think any of my close colleagues are - so someone has to step up and do that and I think I'm confident to, like I'm willing to try and learn about it and do it properly, so in that way I think I'm doing the best I can and people aren’t expecting. Yeah, there's no pressure to do an amazing job on it because people aren’t expecting a lot from it, I don’t think. Maybe I'm being unfair, but I don’t feel pressure to do an amazing job [laughs] at it. So in that way the only thing you can do is surprise people positively, isn’t it? I don’t think I would ever have people say, "Oh you haven’t done this well enough" or - It's quite, I see it more as a challenge to persuade people that it's useful and make sure that it is useful, and the only thing I'm really going to lose is the time I'm putting into it, but hopefully that'll be well used.
 

Stuart has learned you have to be prepared to manage difficult conversations when you don’t agree with people, and to accept compromise.

Stuart has learned you have to be prepared to manage difficult conversations when you don’t agree with people, and to accept compromise.

Age at interview: 59
Sex: Male
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So the thing about this stuff is that it is very open and very open ended and sometimes the people who become involved are not easy to work with and in not acknowledging that is stupid, it seems to me. And sometimes it’s because they, you know, you may get people who have particular obsessions and their obsessions may be to do with what you see some of those people come with ideas about the causes of things which probably don’t chime with what the rest of us think. And may want to just talk about that all the time yes and that’s really difficult and you have to kind of allow for those really difficult conversations. So that’s kind of the worst end personally because it’s really difficult when somebody is in your mind completely off beat, but that shaves gradually into the most difficult bit where all of us have to learn a lot. Which is that if you’re really going to have people involved you have to understand that you don’t know it, because when you first start doing this stuff, if I’m honest, what basically happens is you go in and you think well I know the result I want how do I make sure I get it okay, that’s what you start off doing. And then you learn it doesn’t work like that, it can work like that but then it’s, you’re wasting your time. So actually you have to learn that you may come up with results which weren’t quite what you thought and sometimes you may end up doing things that you actually wish you didn’t do it that way.
 

People may have unrealistic expectations and may want to talk about topics that are emotionally important to them but not relevant for the research. Valerie finds managing this difficult.

People may have unrealistic expectations and may want to talk about topics that are emotionally important to them but not relevant for the research. Valerie finds managing this difficult.

Age at interview: 39
Sex: Female
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And how does it feel that you might have to let go of the control?

Well personally as a complete and utter control freak yeah it's difficult. It is difficult but it makes perfect sense and I think you can't argue with the basic logic behind the idea of its right to let people have a say in research about them. And it's going to be better research – it's going to be more relevant and people will take part in it, you know. So although we're kind of maybe not used to thinking along the lines of letting other people design research for us, you know, you can't argue with the sense of doing it and the rightness of doing it. But I think we do, we don’t just kind of throw it up in the air and it's a free for all because we do try to be quite clear with the families that we work with and the difficulties of getting research funded and how long it takes to, not only to do research, but to even get money to do research. So we do, from the start, try to, again it's that expression ‘manage expectations’. But, be up front and kind of transparent with people about like the likelihood of their idea being even taken forward because it either doesn’t fit with our skill set here which is, you know, because there are a multitude of issues that are really important to the families and they are really important but we don’t have the skills or the capacity to even start thinking about going down that route. So we try to be really upfront about that and people, you know, there is stuff that is going to be more likely to get funded than others and there are certain ways of twisting the objectives to make them more appealing and it might not be quite what you had in mind but it's more likely to do something, you know. 

So we just try to be really clear on that front and, so it's not just, I mean obviously everybody in the group we try to make it as equal as possible. So as researchers we still have our input to the ideas and the shape of the research and takes and, I think yeah but that, we try to kind of have guidance around the tangential conversations that go on around the table. But it can be, you know, it can be difficult because obviously you're, when you're talking about people's experiences on why these ideas are so important to them, these are really emotive topics for them and they're talking about their children and you sometimes have to say, "I know that’s important to you but it's not going anywhere, or it's not research, it's a service issue and we know the services are shit and I know that that’s not." And that’s one of the difficulties I think is not being able to do everything that people want.
 

Rebecca reflects on managing difficult conversations and emotions, and ensuring everyone gets a chance to speak. Junior researchers may lack confidence to manage conflict.

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Rebecca reflects on managing difficult conversations and emotions, and ensuring everyone gets a chance to speak. Junior researchers may lack confidence to manage conflict.

Age at interview: 31
Sex: Female
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If someone's sort of dominating the conversation that can be quite difficult how to facilitate the conversation, like any meeting, if someone sort of spends twenty minutes talking about whatever their issue, their thing is and you’re thinking, 'Well if you’ve got this whole agenda or we've got where we need to get to,' that can be quite a challenge when you don’t want to offend anyone and stop them talking, because you want to hear what they’ve got to say. But at the same time you might have eight other people and you want to hear what they’ve got to say. And so that’s another difficult conversation to have. And also if it's very emotional which that often links into as well. If it's a very emotional topic that someone's, we're talking about someone's condition or their lives or their communities and obviously it can be upsetting. I mean it can be very rewarding talking about it, but it can be sort of bring up other things, so you’ve got to kind of balance that and manage that…

I think advanced planning helps manage expectations as much as possible. But, like with anything, with anybody, you can give information and, you know we give out information sheets all the time or we send out emails. We receive a lot of emails; how often do we read everything in it and then remember everything that’s in it, given everything else that we do? And that’s exactly the same. So having it down and writing helps because you can refer to it. Setting it out in discussions at the beginning can help. Again, so that way it's not just in writing, you know that whole adage of don’t just write something; you know, give it two or three different ways because everyone learns in different ways and remembers things. So saying at the beginning and setting ground rules can be useful although can be quite difficult because that becomes quite formal and it depends on the tone and relationship you might have with the partners. So if they're people that you don’t know and you're working with them for the first time maybe it's more of a consultation. You just want to get their ideas and – then that can be really useful but at the same time it might sort of change the tone a little bit. So, which is something you get through experience but it can no matter how much experience you can always go wrong. 

And so I think certain ground rules but then also, with the best will in the world something can upset somebody which you completely unintended consequence that you couldn’t foresee, and then it's about how to manage that, how to help resolve the problem which is a skill and it's a skill that’s taught… It's something I'm keen to bring into our training is how to manage difficult conversations, because it might be a difficult conversation about money but it might be a difficult conversation that someone's getting upset about something. And it might become quite challenging – I'm trying to think of another word to ‘difficult’. It's just unintended consequence – someone gets offended and it's how do you resolve that and that sort of constant management. But often you can be a little bit sort of blindsided with that because you don’t expect it…

And so yeah, you need training for that; you need that skill of how to sort of identify the problem, identify how someone feels about it and think of how to resolve it so it doesn’t happen again. That sort of process, which is a management sort of process of handling conflict, is really important to teach to people and people who are often maybe doing PPI, the involvement work in the beginning, often want junior members of the team and they might not have had that training or might not feel they have that confidence to use it. So that can be another challenge. You'd want to make sure everyone's comfortable and happy but that’s sort of difficult.
Emotions listening to patient and family stories
One of the biggest areas of emotional impact for researchers was around listening to people’s stories, which could be moving, distressing and inspiring in equal measure. Chris described it as a ‘privileged insight’ and Sergio commented that, ‘First of all it humbles research; it keeps telling us that we've loftier topics here. Second, it allows people to appreciate that a patient is not a symptom.’ Although very senior researchers talked of their own emotional responses, several worried even more about the impact on younger, less experienced researchers, and those who are unused to patient contact. Kristin was concerned that focusing too much on individuals’ stories risked casting them as powerless victims, and felt researchers needed to ‘be a bit matter of fact about it’. She was more upset by learning about the inequity of the social care system, and the stress of managing group dynamics.
 

Researchers may feel upset listening to people’s stories, and scared that how they respond may come across either as too warm and patronising or too hard and distant.

Researchers may feel upset listening to people’s stories, and scared that how they respond may come across either as too warm and patronising or too hard and distant.

Age at interview: 40
Sex: Female
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Are there emotional consequences for researchers?

No that’s a good question. Again there's this feeling threatened – I suppose that’s an emotion. But also perhaps not knowing how to manage someone else as well, or someone else's emotions. We talked, I can't remember who I was talking to this about but you know, I think you get quite a lot of experience of doing that with qualitative research because, you know, you see a lot of emotion. But I think, you know, for some people that’s quite, you know, alien and they're actually, you know, within their sort of, their sort of professional head on and, you know, they wouldn’t necessarily be able to cope with that. But I think, yes I suppose for researchers kind of, you know, and also the, 'Oh god am I doing the right thing? Am I, you know if I'm going to do this I should do it well; am I involving the right people?' So there's slight worry I guess. And then, you know, and actually, you know it's like any, when you do any research you might not realise how you're going to be affected by someone else's experience as well and whether it, you know, chimes something in yourself too. And I've certainly had that happen a few times.

Not with involvement but just with other, you know more qualitative work. So yeah, so I think, I think, I'm trying to think what else really but I think that’s probably it you know, sort of you know, the you know managing your emotions of your, you know, empathising, upset by the person, you know, who's telling the story. You know and also ensuring that, you know, your empathy is not perceived as patronising or, you know, there's all kinds of things like that as well so it's about how you... And also that you're not seen as hard as well so it's kind of a difficult balance to make really. So I think, yeah I think that’s a really tricky one because, you know, you're sort of. And I think that comes, that’s the problem because that comes with experience as well and actually people haven’t had that experience; then they can feel a bit, I don’t know, at sea really and a bit kind of scared by it. Yeah so there you go – scared, threatened [laughs]. All those lovely emotions. You know but also on the flipside, you know, if you can get something to work positive, you know that you feel that actually you're, you know, you're really hearing somebody as well you know. And for some people that’s not going to be a given but that will be for me so yeah, yeah.
 

Jo says PPI meetings can trigger unexpected emotional responses. Researchers feel a responsibility to take care of people and that can be ‘a very personal emotional cost’ for them too.

Jo says PPI meetings can trigger unexpected emotional responses. Researchers feel a responsibility to take care of people and that can be ‘a very personal emotional cost’ for them too.

Age at interview: 50
Sex: Female
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Are there emotional consequences of involvement for researchers? Can there be?

Yeah I think anything that involves working with, with patients and members of the public can have huge emotional consequences you know, it ceases to be an academic exercise you’re working with real people who, who can have incredibly and sometimes you don’t know you can involve people I’ve been in situations before where you just don’t know how something’s are going to pan out and something seemingly innocuous can just trigger something for somebody or, you know, and you, you have responsibility as such to take care of the people you’re working with and I think there is, that’s a very personal emotional cost because these aren’t other researchers, these are patients and members of the public. So yeah I think that can be quite difficult, I think you, on the one hand you feel a responsibility to those people in terms of delivering what you said you’d deliver but there’s also the kind of, the managing and holding of their expectations and their emotional responses to the process and dealing with things when things go wrong, dealing with thing when they go right, you know, all of those things, you know, ultimately you are going to illicit strong emotions in people, so I think it does actually. I think you just need to be aware of that, it’s not all the time and it’s not always negative but I think, you know, it can be a real roller-coaster.
 

Marian worries about some of her more junior researchers listening to difficult stories about pregnancy. They had some training about bereavement and emotions.

Marian worries about some of her more junior researchers listening to difficult stories about pregnancy. They had some training about bereavement and emotions.

Age at interview: 46
Sex: Female
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It is emotionally charged. I guess the whole area I work in is it can be very difficult because, you know pregnancy and childbirth, for most people – happiest days of their lives. They, you know it's a day they’ll always remember with joy and for the, I guess the small sub-set we work with, the pregnancies have been difficult; lots of uncertainties and that day the baby was born is not the same. Many of the couples where the mum's had a severe illness, that colours her whole, the whole of the rest of her life almost. We talked to, this is one of part of one of the Healthtalkonline modules actually – we talked to a mum who'd had twenty years after she'd had her son and she still felt that her relationship with him was coloured by the fact that she had such an abnormal birth experience. So you do have to be emotionally quite strong. 

And I guess for me, because I can see some of the changes, so we've got I know of practical examples where the research that I've done has made a difference which should, even if I can't actually demonstrate it, should improve, you know should prevent people getting ill, and then you have to bear that in mind. I worry about some of my junior researchers; so you know I've had my family. Other of my researchers haven’t. And I do worry about them being exposed to their contact with PPI. And so they're only, they're not medically qualified, their only contact with childbirth experiences are this very extreme negative side of it. So it is interesting. 

…So we've, so for the team on the half of the programme that I deal with where we deal with maternal deaths, we've had a whole session with a, in fact run by a group from the Foundation that deals with sudden infant deaths, essentially dealing with the some of the bereavement issues and sort of your own emotions and how you can get more support. But it is difficult, it is difficult particularly, as I say, for people who are not clinically trained so either nurses, midwives, doctors or other allied health professionals. It is hard and I guess I tend to, therefore, take more of the burden on myself because I guess I feel robust enough to be able to deal with those. So I hadn’t thought about PPI training in that respect for the researchers quite as formally as that, but that’s probably a good idea.
 

Kristin feels researchers need to ‘be a bit matter of fact’ and not get over-emotional about individual stories. She is more upset by the way the system operates against people.

Kristin feels researchers need to ‘be a bit matter of fact’ and not get over-emotional about individual stories. She is more upset by the way the system operates against people.

Age at interview: 42
Sex: Female
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And looked after children and care leavers can have sort of can have, have lived really difficult lives and have had, you know difficult experiences. And was hearing any of that, or did you hear any of that, but was any of that kind of emotionally distressing for you?

I was prepared for that. I mean that’s why I wanted to involve this group but I don’t feel that those experiences defined those people. Of course it is sad to hear sad stories but I resist; I resent kind of putting them in a very sort of victim position. I mean these were people who were doing a systematic review and doing other stuff too. There was, you know, they were participating in life and I think it's very easy that I would; I mean I'm getting quite emotional now talking about that so I suppose there was some kind of emotional consequence about it but, yeah, yeah I think it's children and young people; young people often, you know and their trouble and all this kind of thing and children are hard work and - And it's going beyond those kinds of stereotypes and trying to go beyond the, yeah the power relationships there and seeing people for what they are, people. So of course it's distressing to hear about them having had difficult times but we didn’t focus on that; we didn’t focus on…

Yeah I think that’s mainly it, you know I get a little bit; I think it's a fair enough question but, I am very worried about coming across as someone that, you know, "Oh I was really nice to them," you know [laughs] or, "It was so difficult to listen to the stories." No, no it wasn’t like that at all. So that’s what I'm resenting; I think that’s why I'm getting passionate too…

But for me it was more, you know what's your experience of the system. And I think what I found most upsetting were those stories.

Because that’s what the research was related to. So when you looked after having a system kind of provide better for you or, yeh. But again I think, I think I was just very prepared; I just had no illusions, no illusions whatsoever. Yeah if you do this kind of work you sort of have to kind of be a bit matter of fact about it I think yeh. But there was, you know social workers have these kind of debrief sessions and stuff but I think I had them with the young people so our debriefing times if there were big conflicts or something and we sort of worked through them together rather than me kind of, obviously I'd come home and sort of tell my husband, "Oh my god," but I wouldn’t, you know it's all anonymised and stuff like that but, you know you still have some emotional things, but I think they were more related to group dynamics and I was trying to move forward and at times really struggling with that.
Emotional consequences for patients and carers
As these accounts suggest, there can be emotional consequences both for the researchers listening and for the patients sharing their experiences, and it is not always obvious what might prove to be an emotional issue. As Jo (above) said, ‘Something seemingly innocuous can just trigger something for somebody.’ Jim, who has experience both as a patient and carer adviser and as a research manager, said, ‘Somebody’s lived experience may come back and bite them.’ Both Marian (above) and Alice recommended some form of training to prepare researchers for dealing with these unanticipated situations. (See also ‘Training needs for involvement’). Marian suggested the need to support people who get involved was another reason why it was good to have several people involved, rather than just one or two. She had originally put some support mechanisms in place for a group of parents with difficult birth experiences, ‘but what’s actually happened is that they are getting the support from each other.’
 

Suzanne disagrees that the ‘best’ patient contributor is always one who can be unemotional. Emotion may be precisely what they bring – but it needs to be treated with sensitivity.

Suzanne disagrees that the ‘best’ patient contributor is always one who can be unemotional. Emotion may be precisely what they bring – but it needs to be treated with sensitivity.

Age at interview: 40
Sex: Female
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And then for patients, I think one of the big things is the emotional impact of it and I think that’s really under-played and it's been interesting in some of the work that we've done – it's kind of been, you know, this idea about what a good patient contributor is and actually ‘unemotional’ is, has come up time and time again. It's like, but actually if you talk to the people who have been involved then they're like; actually this stirred up loads of emotions in me and actually I think, you know, for some people the emotion is the power that they bring to the situation. 

And I think it's sort of helping that. I think that’s a real issue, like helping those who are doing the involving to manage that but also, you know, if the person is upset let them be as well because actually they're there, you know, most of the time because they’ve had that particular experience. But for them if that’s not managed appropriately that can be a real downside. I'm not saying everyone's weeping and wailing, but you know what I mean, it's kind of, you know, realising the potential for that. 
 

Jim is mostly at ease talking about his wife’s cancer but it can upset others listening to his story. Both researchers and patients need to be aware that emotions can suddenly surface.

Jim is mostly at ease talking about his wife’s cancer but it can upset others listening to his story. Both researchers and patients need to be aware that emotions can suddenly surface.

Age at interview: 52
Sex: Male
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No, I think whether you're a person who's being involved or whether you're a person who's doing the involvement, you have to be aware of the fact that somebody's lived experience may, you know may come back and bite them. You know depends what it is but sometimes it's, there's a lot of energy behind someone's lived experience so it's a major driver, but sometimes because people's emotional states change and vary, there are times when actually it really hits back and bites you and suddenly you're completely useless and you can't do anything and you have to; you really have to be aware of, in the same way that you should always be aware of that whenever you're talking to, or interacting, or have any form of relationship with somebody whatever the circumstances, whether they're professional or personal, that people's emotional states change and you need to be aware of, as aware as you can be, of circumstances and people get upset for reasons that sometimes are obvious and sometimes are completely not obvious. 

So it is, I suppose it's something that’s different in a set of relationships that if you are involving people in research, or research management, because of their lived experience you have to be aware of the fact that lived experience might become rather raw and might make them upset. It doesn’t happen often but it does happen and you have to be sensitive to that, and that’s time for, you know time out and look after them.

And that’s; I've seen that happen with some of the; some of the researchers have co-researchers, where actually the co-researchers are fantastic at that. You know they're real advocates and they all just take time out and they will spend as long as it takes to help the person get through whatever issue happens to have arisen for them.

And that’s, and that’s an added colour to public involvement.
 

Alice recommends training in how to involve people, for whom the research may be a very emotional issue.

Alice recommends training in how to involve people, for whom the research may be a very emotional issue.

Age at interview: 26
Sex: Female
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And do you think researchers need training?

In PPI? 

Mm

Yeah I think that would be good because without some kind of training I don’t know how you would, how you would decide to do things. Like there's so many things you can do wrong, you know, particularly this is people's lives. To me cancer is something I work with that having that in your life is a totally different thing. You know, childhood disability it was my work – to someone else it's their everyday, it's really emotional, a big issue for them so particularly this is everywhere in health research so I think you need some training in what to do kind of practically, like how you can integrate it effectively would be good, would be needed to ensure that people are actually, I say doing it right, but it's hard to say what is right but you know, if people aren’t wasting their time with PPI. But I think also some kind of training and dealing with people in those circumstances would be helpful. You know, that kind of empathy doesn’t come to everybody naturally and if something does go wrong on a practical point of view, to you oh it's just a bad day at work. But to somebody else it's their life and there's a lot at stake yeah. 
Researchers’ own feelings and experiences
Jim talked about some cases where people have been motivated to become researchers because of their own family experience. He knew of a young doctor who ‘lost his mother when he was young to cancer, which is why he’s become a palliative care doctor. He described it as "the fire in the belly".' Another researcher we talked to explained that she was very conscious that her own experience of having a disabled older brother ‘influences a lot of what I do.’ In ‘Representativeness and diversity of people who get involved’ we discuss the extent to which researchers feel they can or should share their own health experiences and feelings. A related issue is the frustration and unhappiness some researchers feel about some of the discourse around PPI that tends to cast them as unfeeling and inhuman.
 

The assumption that researchers are ‘robotic, unfeeling people’ unless they have patient involvement can feel a bit insulting.

The assumption that researchers are ‘robotic, unfeeling people’ unless they have patient involvement can feel a bit insulting.

Age at interview: 32
Sex: Female
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And there are people who have negative experiences and I think that can, you know, that goes back to I think the more basic thing of, it can be scary because you think, 'Am I just going to sit here and get told off by this group of patients who think that what I'm doing is rubbish?’ And, you know, ‘I've been, I've been working on this for nine years now and I don’t want to be told that I don’t understand things.' And, you know. And that I think is sometimes dangerous, I think sometimes as a kind of an implicit and sometimes actually explicit kind of storyline in this idea that we need PPI because actually we're all these kind of you know, robotic, unfeeling people who don’t understand what patients go through. And I think, I wonder sometimes if that’s a little bit of the friction as well, there's this kind of so what, you know, I've spoken to hundreds of patients; I spend all my time, you know, exploring this and exploring the impact on them, and you're telling me that I don’t know anything about it. And that, you know, I wonder if that’s, but it's almost a bit of a professional insult and a bit of a personal insult I think as well. So yeah [laughs]. 
 

Kristin does not like the idea that ‘researchers are bad and people who are involved are good’. Involvement conferences can end up feeling ‘a bit researcher-bashing’.

Kristin does not like the idea that ‘researchers are bad and people who are involved are good’. Involvement conferences can end up feeling ‘a bit researcher-bashing’.

Age at interview: 42
Sex: Female
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The other thing that I don’t like is this idea that researchers are bad and people who are involved are good because there are definitely lots of nasty researchers and lots of nasty people either side so it just seems like a very strange dichotomy. And I've always found that, actually you know, I'm so nervous about talking to the gatekeeper and I'm so nervous about the young people not liking me or not liking what we're trying to do that there's certainly, I don’t feel like this nasty researcher that’s sort of making all the decisions and sort of capturing them into this prison of positivist research or whatever. So yeah I found that like some of the involvement conferences can be a bit sort of researcher bashing and that’s certainly not helpful if you want to. It's like we just did our way and I'm thinking, 'Well if you want to be taken seriously like you have to understand that, you know it's a bit like the alternative therapist, you know.' Well if your stuff isn't based on the same kind of framework then you are going to be on the side of it. That’s fine, you can say, "I don’t mind," that’s absolutely but don’t bash the triallists then do you know what I mean? Like they operate in a different framework from you so it's a bit of the same anyway yeah.
 

Rebecca gets upset when she hears people dismiss all researchers as unable to talk to ‘real people’. She points out she’s a ‘real person’ too, even though she knows researchers need to use less jargon.

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Rebecca gets upset when she hears people dismiss all researchers as unable to talk to ‘real people’. She points out she’s a ‘real person’ too, even though she knows researchers need to use less jargon.

Age at interview: 31
Sex: Female
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I did go to one event where someone said, it was PPI partners were saying, "Researchers are this and researchers are that," and I sat there, and they go, "Well they can't talk to anybody, they can't talk to real people." And I got really upset by the end of it. So I went, "I am a real person." I might not; you know I might, my job is a researcher but I'm still a person, you know? And so I hadn’t had it happen that way before, and when it did I was like, "Well you’ve just given me a label as a researcher, that’s my job. And yes, there's quite a lot in that about me, probably, but I am, I hope, I still am a person and I hope that someone doesn’t get put off, you know”. It is difficult and I think some of that, it's hard to untangle some of the history of academia and how research is seen outside. But at the same time, I come home, you know I have my normal life. So when people say, "Oh, researchers can't talk to normal people," and I was thinking, “I come home and talk to my Mum and Dad, I talk to my friends; they have nothing to do with research”, you know. But maybe but we do get stuck in our language as well. We have our acronyms, our shortcuts the same way as when you interview a clinician they might have their shortcuts. 

You interview somebody about their job and they'd, whatever job it is, they have their shortcuts. And we have to be wary to make sure if we're involving people that we try and reduce our acronyms, which there's a lot in health research. But also our terminology can sometimes be quite off-putting and we spent, you know, what - nine years training to become this researcher. So we're used to it; we didn’t start off knowing differences in methodologies or different terms or whatever. And so we have to be conscious that actually if we want to involve people meaningfully, we have to explain those terms and, or maybe not use those terms at all. But they’re a shorthand that sometimes we do use and don’t notice we're using, and I do like to say to people, "If I'm not making sense, stop me," because that is important. But it's very hard to break that cycle when you then go into another meeting and that’s what you're expected to talk, how you're expected to talk. So that, but that’s part of the learning. Its ongoing learning and development as a researcher.
Feeling ambivalent about involvement
Finally some researchers shared feelings of ambivalence about involving people. As noted in ‘reasons for involving people’ some felt pressure to do it because it was ‘trendy’, ‘fashionable’ and ‘politically correct’. Whilst it may be true that researchers are usually in a more powerful position than patients and the public, researchers can also feel disempowered and vulnerable, and unable to criticise involvement. Alison explained why she personally felt ambivalent.
 

Patient involvement can make you think differently even if the impact is not huge. But Alison sometimes feels under pressure to be more positive about it than she feels. She says ‘about sixty percent I want to do it.’

Patient involvement can make you think differently even if the impact is not huge. But Alison sometimes feels under pressure to be more positive about it than she feels. She says ‘about sixty percent I want to do it.’

Age at interview: 47
Sex: Female
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The benefits – I guess that’s sort of, that broad reality check thing; so nice interesting people and a lot of the benefit comes not so much from the formal discussion about a particular piece of work they're involved in but a more general chat, insight into their life stuff which is maybe outside the direct scope of what we're looking at anyway – puts ideas into your head and you think, 'Mm.' 

And occasionally there have been cases where someone's picked up on something, you go, "Ooh yeah good point I forgot to take account of that in this thing I've just written or..." So yeah there are certainly some examples of those things but not that many to be honest. But also I guess it gives you a sense of confidence that, if you’ve, in terms of interpretation of material and also, you know, writing up an information sheet or a plain English abstract or something, it is your people there to check it with and you think, 'OK they may not have changed many words, they may just have said it's fine…' but that’s a useful thing, that’s an endorsement. 

Yeah so yeah I think don’t abandon it, that’s for sure for all my reservations.

And how much is it something that you want to do?

Mm about sixty percent I want to do it. The bits of me that don’t want to do it are the kind of, 'Oh god I've got to be polite to people when I’m not in the mood to be’ [laughs] – all that kind of stuff.  And this sense of oh I've got to, there’s a word for it.  When you're sort of smiling and endorsing one way of doing something and inside you're thinking, 'I know this is a waste of time,' or pretending something is true which isn’t, I feel really isn’t true and that’s, I'm giving you very mixed up response here aren’t I? But that, no on balance I think, 'Well kind of, it's a nice thing to do and it might make a bit of a difference but I don’t think it makes that much difference.' But the public message we have to sort of endorse and support is, 'it's terribly valuable and important and makes a massive difference.' So I think that to sort of disjunction between what I think inside and the kind of the public story, I feel uncomfortable with. So that’s one reason for, yeah the reason for my forty percent – oooh don’t make me do it.

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