No again I think that, you know, we try and involve families in all aspects of our research and our associated activities. I think it’s, you know, there are challenges to involving, in our instance, parents and young people in every aspect of their research, but they’re not insurmountable. You know, even in dry academic activities like systematic reviews we’ve involved people in framing the questions, where we might look for evidence other than in the sort of standard databases; our inclusion, exclusion criteria for the review. One parent was even particularly keen to do some searching so we enabled that. Then there’s reviewing what you found and interpreting it and telling people about it at the end so we’ve had parents presenting with us at conferences either about their being involved with us in the rationale of what we’ve done, but equally at other conferences telling people about what we found in substantive research projects.

And, you know, in generating research questions in co-applicants and funding and doing just systematic reviews, qualitative research, surveys. And not so much myself but other people in well actually yeah no in designing a clinical trial that wasn’t subsequently funded but there was a father who was, was very keen, and again travelled quite a distance to come and have a couple of meetings with us. And people have reviewed documents by email so, so I think yeah, no I think people could be involved in every part of the process if the opportunity is presented in the right way. For us, the awareness is around how much individual people might want to be involved so not everybody has the time or the inclination to want to be involved in every aspect. Some people, you know, and that might change over time so I think that flexibility is really important as well and not having a contract where if you said you were going to be involved then you have to do this, that and the other, you know, as I say, working with families with disabled children you do need that flexibility and that light dip in and out approach. But then to be ready when somebody really wants to invest more time in it and then work harder ourselves to enable that opportunity.

From my perspective, I’m being paid to be in a room and having a discussion and I’m involving that person as an expert in, whose insights I don’t have as the researcher, so I feel very much in the camp of acknowledging, acknowledging them where resources are available. So I think the level of reimbursement depends on what resources are available. We had a very interesting exchange in a meeting recently where there were parents and some researchers and some parents gave a presentation about their experience of being involved and there was an ensuing discussion and one of the researchers not from this organisation but he said, “Well, you know, the system’s difficult because we can’t pay,” I’m not sure if he used that word but there was this acknowledgement payment before you got the research funded.

Now we’re in a fortunate position being part of the CLAHRC and because of our charitable funding that we can provide that acknowledgement even before we get to the grant. But one of the parents in that discussion said that they wouldn’t be worried, they’d be happy to be involved without any financial acknowledgement if there wasn’t a resource available, if it was approached respectfully and transparently. You know, obviously if some funding would enable acknowledgement then that would be great. But to assume that they wouldn’t do it or that there would be some rigidity around it would be wrong. You know that parents are very happy to come along and do some of the work that we do together without the acknowledgement if we didn’t have the funding. But if we got the funding then I think it’s right and proper that we should acknowledge them.

Well I would think most of those there will be people in certain socio-economic situations who would find it more difficult to know about us and, or for us to know about them, and then depending on what’s going on in their lives to actually come and spend time hanging out with us. [place name]’s not got the same ethnic diversity as some other parts of the country so we, you know, would not sort of profess to be, you know, I’m trying to think of the right way of expressing it really, you know. There isn’t the ethnic diversity down here that there would be in some other parts of the country and that is what it is. So, and we’re involving. The statistics would estimate that one in twenty children have additional health needs and I think the estimate would be about eleven thousand children in [place name] and we’ve got a couple of hundred families on our email lists and I would say that about fifty parents a year come to our meetings. And there’s a hard core group of ten to fifteen who come to quite a lot of our meetings.

So to even pretend that those ten to fifteen are representative of eleven thousands families I think would be ridiculous. For me that’s not the representativeness, whilst very important if you’re looking at specific research questions that relate to people in very specific circumstances, then it would be really important to seek them out. But to us, this is, you know, this is doing it in a way that enables some families to do it and be involved as partners with us and we acknowledge that that’s not representative and imperfect in some respects. But it really had an impact on what we do and the people that have been involved with us and us so it is what it is. Some might call it tokenistic, I don’t know. It still feels very worthwhile.

Mm

If, as I say, imperfect.

And why do you think some might call what you do tokenistic?

Well just, you know, I was really mirroring your opening question which was about is it representative; are there people that aren’t included because of an obvious question you might say, “Are you involving certain groups of people? and, you know, they’re the people that have power anyway but I think we do try it to overcome those barriers but . And I think we have enabled a cross-section of people to be involved with us. But we don’t monitor that in any, in any way; we don’t seek to measure the characteristics of the people that come by looking at their deprivation in the area where they live or how much, you know, anything about them in that way really. We don’t monitor ethnic diversity or any of those characteristics. I think we involve them because they’re coming to give us time and, you know, we’re on a journey together whoever we are.

What about messages to researchers who are sceptical or reluctant to do PPI?

To reflect on the reasons for their scepticism really. Just, you know, people have their own views and they’re very entitled to them. I don’t feel evangelical that everyone has to do it this way. I think there is a significant proportion of people who are very invested and believe in PPI and I think I’ve been on a journey moving towards understanding how it can impact research, but it’s taken me some time to understand so, and, you know. I think there are ways that involvement can influence all types of research at any level and but people have got to be open to it and if people aren’t open to it then, you know, I think that’s fine. I think there are debates that can be had about how much resource to put into it and obviously how the research, how the involvement happens because if it’s being done badly and it’s not having any impact then is there any point to it? And is there some harm to the people? And if people have had bad experiences they might not engage again. So, you know, it’s about identifying good practices and sharing those and if people think that will help them then that’s great, that’s yeah I do. Yeah, full stop.

So at the beginning so you didn’t necessarily have formal training, there was lots of kind of trial and error is that kind of accepted here that trial and error is an appropriate approach to kind of learning how to do PPI?

It’s certainly very acceptable to me in a process of learning so they could try things that aren’t working. Is it important to, I mean there’s a cultural support for involving various patients and members of the public in the organisation and I think that’s very helpful to be part of and, you know, even kettle conversations whilst, you know, making a cup of tea and you’re sharing challenges and experiences with people who understand that, are a great resource so I do think the culture of the organisation is an important support for being able to do this properly and feeling. It would be much more difficult if you were on your own doing this without a supportive community of people.

And why do you think it would be more difficult if you were on your own?

Well just not to have that community of people to talk therapeutically about the challenges and successes. So just, it’s not impossible if you’re a lone researcher but it, I think it’s easier to be tapped into a network so that you can, you can share ideas.

But we’ve been very lucky our charitable funding enables us to have a family involvement co-ordinator and that wasn’t a role that existed until we’d been up and running for six or nine months. We became aware that it was going to be a crucial part of making the involvement happen. Up until that time it was one and a half researchers trying to do that and some admin support. And then just through a change in circumstances somebody was able to take on that sort of pastoral care for the family a mixture of the sort of pastoral care, advertising the opportunity and that person wasn’t a full-time academic researcher, but they’d worked around the university sufficiently that they were familiar with what we were trying to achieve. But they didn’t have a, their priority wasn’t to get grants and write papers, they just really had the interpersonal skills to form bonds with the parents and be that sort of bridge between the boffins and the families. And so that’s become a crucial resource for our group, that role.

And are there tasks that compete for your time? So I mean some of the researchers I’ve spoken to have said, you know, as a researcher I’m employed to write papers and get funding proposals and I have to do PPI as well.

Hm mm

Is that sort of the case for you too?

I could argue that but it’s not what I believe. It’s partly, you know, it’s your motivation for doing the research and there probably is a corporate mentality in the University for bringing the money in and publishing in high impact journals. But much of our research in childhood disability research is never going to hit the high impact journals and we’ve been reasonably successful in bringing money in I think because of the way we’ve gone about our involvement. So I kind of think, and now whenever we publish a paper we always put in a paragraph describing how families have been involved and we’ve written two short pieces in non-high impact journals but very much in the childhood disability field of well thought of journals about how we’ve involved families in our research. So we’ve developed somewhat of a reputation for doing it and so I think it’s been a real asset to us. And whilst we’ve learned we’re also now sharing what we’ve learned with the academic community to our benefit rather than to our detriment.

And do you give people feedback about the sort of the difference that they’ve made as they go along?

Yeah, yeah, no I think, you know, giving people constructive, you know, acknowledging when people are doing things well. And, you know, gently trying to pick out, you know, where things could be done differently and I think that’s an important part of it and equally it should be reciprocated and parents I give them free rein to tell us when we’re doing things wrong and what we could do differently, you know. One of our parents suggested, you know, you should give out, well you should give out certificates where people have been involved in projects because, you know, some of these parents have been out of work for periods of time and if they want to go back they want some documented evidence of what they’ve been doing. So yeah, I think, I think, I try to create a culture within our research group with the parents where it’s very two-way.

And, and they seem quite willing to tell me where we could do things differently and I think that’s great.

That’s good. And if you do have to give any sort of constructive feedback, you know, maybe something that’s a wee bit tricky how do you find doing that?

Oh it’s always a very challenging thing in any sort of circumstances you know, as a line manager or a friend in any circumstance, I think it just needs to be done sensitively, if at all. I think there’s an element of choosing when it’s appropriate or not. I think in some senses our parents provide it with each other. I think, you know, occasionally someone will have an issue that they really want to sound off about and that’s OK and then the group will round them off and sort of come back on topic again. You know, occasionally I might have to sort of moderate a discussion to get it back on topic from my point of view and, but try and do it in an easy way, you know.

Rather than an overly officious way.

So yeah, I think it’s just moderating those sort of occasions, are a common example of needing to just sort of steer the activity or steer the discussion to keep it on course for what we, as a group, are trying to achieve.

I think we need more evidence of what has, what leads to a greater impact. What methods of going about involvement create more impact for the people, for the research and for the researchers? And I think that’s; it’s understanding the relationships between the methods and the impact that’s the important thing. Certainly if you go about it in the wrong way and then you’re, could at worst have, you know, harmful impacts on people. So I think those relationships are very important to understand. Though I mean there are in, you know, emerging ways to evaluate the impacts from the way people have been involved and we’re very interested in that and using those, and building that sort of evaluation into any sort of major grants that we do from the beginning.

Because otherwise we get to the end and we think, ‘God that was. I wonder how everyone felt about that,’ and we send out this retrospective questionnaire and by then we can’t remember where we’ve come from, even ourselves, let alone asking other people to reflect in that way. But we had a really at the end of a project that was looking at sort of patient reported outcomes for children with neuro-disability, and four parents had been heavily involved throughout that project and. So we sent the questionnaire to the four parents and also to our co-investigating professional researchers, and it was really interesting because the family, the parents, four parents really sort of had enjoyed the experience but felt like they hadn’t had much impact on the research itself which wasn’t our perception and the perception of our co-researchers was they were amazed at how the parents had come along and given that time and had that input and been really sort of impressive and active in the meetings with, you know, with us all there together. So, you know, I think it’s easy, I think it’s really important to investigate those things and to highlight them and to give people feedback, you know, about making people understand where they’ve had an impact on stuff. And in order to do that you’ve really got to be spending the additional resource, monitoring it while you’re doing it so that you don’t miss out on seeing where you’ve come from.

I know you said that when you first started doing this there wasn’t any sort of formal training or anything that you sort of could have done; do you?

Well there might have been, I just didn’t know about it.

Right

Or I didn’t look for it [laughs].

Right OK. And I mean thinking about, thinking back on that do you think that training would have helped you in any way?

I think if there’d have been the knowledge out there about how to do it but I’m not so sure there was to be honest. I think the best advice you can give anyone is treat people as you would like to be treated yourself courtesy, look after them; if someone came to your house you’d offer them a cup of tea, so offer them a cup of tea and if you’ve got some funding or, you know, a bit of bread at home, make some sandwiches, you know. Our feedback forms in our first couple of years, you know, everyone mentioned the lunch. You know, that didn’t occur to us not to provide some sandwiches at midday, you know. Most of our meetings are between ten and one so we, the meeting runs from ten till twelve and then we have lunch afterwards and, you know, a lot of families really, and parents really enjoy the peer support, so it’s chatting to each other.

So lunch is a key part of it for us and we provided it. But what we didn’t understand is parents go, get invited to a lot of forums particularly, you know, about how services are organised and how few people actually provide lunch. Or even, you know, anything at all. You know, so that, that’s just so important you know. Look after people and make them feel welcome, part of something and, you know, cup of tea and a sandwich and a biscuit and bit of a laugh [laughs]. It’s not a complex intervention is it?

No?

Well no it probably is in some settings.

There was very little formal training. It was learning on the job and I think, I think the organisation’s been on a journey in the last five years. I think there were some people who were ahead of the game and knew more and the rest of us have kind of caught up and tried to push it forward in our different realms. I mean I work in childhood disability research and so its families with disabled children, and other people have different challenges working with different, different groups.

Which are, are just different challenges, you know, whether that be working with people with mental health issues or elderly. Each area of health services research will have its unique challenges. So ours has been really sort of learning through trialling things and things that have gone well and the things we’ve learnt not to do.

I mean our project’s really interesting because it came from a parent of a child who has behavioural challenges and that father had had trouble getting an x-ray at the dentist for his child and wrote to us on an email and said, you know, “Is there any research about this?” And I know little more about dentists than going to the dentist myself and feeling anxious about that, so it wasn’t an area we knew anything about but we looked in, we followed our procedures for writing what we call our ‘what’s the evidence’ summaries that appear on our website that are based on things that families have asked us about.

So we looked in the usual sources of high level evidence, the Cochrane library and database of systematic reviews about x-rays and dentists and various words to describe disabled children, children with neurological conditions. And there is a literature out there about, you know, there’s a Cochrane review about whether you should use anaesthetics for taking x-rays in children with challenging behaviour. And we also sent an email to our family faculty and said, you know, “Is this something other families have faced or anything else about oral care and dentistry?” And we got an overwhelming response; you know, families have significant challenges managing children’s teeth either because the, you know, the neuro-disability affects, you know, self-care, tooth brushing or the dentist’s surgery wasn’t accessible or they struggled to get someone who would give the time in an appropriate fashion to enable the oral examination to take place. So it seemed like a massive issue and we wrote our ‘what’s the evidence’ summary and put it on our website and ticked the done box. But then we were approached by some dentists in [place name] who came across it and were really interested in it and that’s led to us having a working group where we have some dental researchers, childhood disability researchers and some parents in the room and that was a really successful meeting lots of sharing of ideas and, you know, building potential research questions from the bottom up.

And do you think there’s lots of things like that happen with PPI, that there’re these things you don’t expect to come out of it?

I think you need to be open to that. I think that, you know, going in that open way is really important you know, because if you knew what you were going to do why are you wasting everybody’s time? I think the reason for engaging with people is because you don’t know stuff and it’s surprising how much we don’t know when you really admit to yourself how much do I really know about this? You know, if we design the study in this way would that really be acceptable and might there be other ways and – I’m always amazed that our, that you know, the parents come back at me with different perceptions and viewpoints and I think it’s probably just because I’m a bit dim. But I think anyone could have that openness and uncertainty about what the right thing to do is.

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.

So I run a childhood disability research group that gets some core funding from a charity called [charity name] and that core funding enables us to have a small infrastructure, a family involvement co-ordinator and a researcher. And between us we invest a lot of time and effort in engaging with the kind of places where families with disabled children go. Predominantly we’ve started off by engaging with parents and so our family involvement co-ordinator will spend time circulating in the community where parents of disabled children are likely to be. And they do have communities that are either peer support groups or parent/carers voice that is a sort of advocacy group for parents with disabled children. And that’s how we got to know a few parents and held a few meetings to find out what they might be interested in and we built a relationship over the last five years. And I think because we’ve had constructive co-operation with a few parents, the words got out and we’ve engaged with more and more.

So we have what’s called our Family Faculty which was a name that I shamelessly took from a research group in Canada that had used the term. So our Family Faculty is currently a few hundred parents of disabled children in [place name] who’ve signed up to stay in contact with what we’re doing and our activities and we have a very low, low requirement for being involved with this. So being involved with this can be just staying aware and receiving emails and hearing about what we do; to ringing up and having telephone conversations or, you know, coming to face to face meetings and working much more closely with this. And the reason we have that light touch engagement is because families are generally very busy and families with disabled children are even busier, and also their circumstances can change; due to their health or the health of their children and so we have very much a sort of light dipping in and out people can come to things and then not come without needing to explain and that seems to work very well.