Podcast – Collaborations and Qualitative Research in Dementia

Voice Over:

Welcome to the Dementia Researcher Podcast, brought to you by dementiaresearcher.nihr.ac.uk, a network for early career researchers.

Adam Smith:

Hello I’m Adam Smith and I’d like to welcome you to the dementia researcher podcast. It’s a sunny September afternoon, and today I’m delighted to be at the University of Bristol getting out of the office and the studio for once in a while. I’ve been very kindly invited to join the first meeting of a group of researchers who come together to discuss collaborations around dementia qualitative research, I’m delighted to introduce Dr Sarah Griffiths from the University of Plymouth and Dr Jemima Dooley from the University of Bristol, Sarah and Jemima, along with regular contributors to the dementia researcher website, Anna Volkmer, are the instigators of the meeting, instigators is…

Jemima/Sarah Griffiths:

Yeah, we’re happy with…happy with instigators [laughing]

Adam Smith:

I should add, this is the second time I’ve just done this intro so I’ve already tried repeating that same question [laughing] – instigators/organisers, anyway, I should also thank you for allowing me to join you today and I’ve sat in along the meeting to hear to hear what was going on and to understand why this group came about and so I should add that there we’re recording this straight off the back of meeting so everything is very fresh, if everybody’s a little bit…hopefully not too tired to talk about what we’re doing and we are going to release this podcast out of sync with the normal schedule so we can release this podcast next week, today is the 20th of September, so we’re releasing this straight afterwards because I I know we’re gonna talk about this some more, but there was quite a lot of interest when you told people that you were going to be having this meeting on Twitter and and so we were really keen to get this out quickly, so that those that were unable to attend today could could hear what it was all about and we could share a little bit more for those that couldn’t make it. Okay so maybe we could start with some introductions? Sarah maybe you could go first, if you could introduce yourself, tell us a bit more about you and your work.

Sarah Griffiths:

Yeah so I have background in speech and language therapy similar to Anna Volkmer who is also involved in this, and I’m also sort of currently working on a research project called DEPACT or Dementia-PACT and we’re, as part of this study which is a kind of 5 year NIHR funded study looking at developing and evaluating the role of dementia support workers based in primary care it’s a mixed methods study and there’s going to be a strong qualitative element of the research so there’s, we’re going to be interviewing people with dementia and also doing some conversation analysis looking at how people with dementia, support workers, carers, all interact together. So I’ve started to be really interested in methods of engaging and involving people with dementia in qualitative research where essentially we want to understand their perceptions of things, their perspective, their views, opinions and how best to kind of go about that when traditionally research in this area is kind of very kind of very verbally based getting people to talk to us, so it’s about looking at the challenges of involving people who have communication and cognitive difficulties.

Adam Smith:

We’ve actually picked up quite a bit of a, we’ve released a couple of podcasts before with Anna on, and others, I recorded one in Sydney earlier this year with some speech and language therapists and they’re always super popular, we’ve picked up a bit of a following amongst speech and language therapists and Anna’s always trying to convince me that there are many but I’m convinced that there must be loads of speech and language therapy academics, because they’re some of our most listened to podcasts the ones with that particular…So are you also still a jobbing clinician, do you still see patients in the NHS or?

Sarah Griffiths:

Not at the moment, no so, I’ve got a background in speech and language therapy and I was clinically active for a long time and then I went into lecturing on a speech and language degree course and now I’m purely focusing on research.

Adam Smith:

Full time?

Sarah Griffiths:

So it has kind of evolved in that way

Adam Smith:

And Jemima?

Jemima Dooley:

Yes hello, yeah so I am a researcher here at Bristol University and the Centre for academic primary care. I am a conversation analyst and a qualitative researcher by background.

Adam Smith:

Wait it, so is there a difference between, is a conversation analyst different to speech and language therapist?

Jemima Dooley:

[laughing] Yes, so they are very different. So I am not clinically trained, conversation analysis is a method to explore communication which is very popular among speech-language therapists, I would say. Because it’s a very…

Sarah Griffiths:

Yeah

Adam Smith:

Just showing my ignorance

Jemima Dooley:

Because it is a very, no not at all, but it’s a way of looking at, it looks at communication as it is actually happening, so it is sort of usually it uses video recordings, audio recordings and analyses communication term by term to see sort of how one part of a conversation might affect the next part and as it keeps going on, so I think appeals to speech and language therapists because that’s the way they think anyway so how did the question I word, how did I , the way I worded this question how did that effect what the answer was.

Adam Smith:

That sounds like it offers lots of different fields of opportunity as well, as haven’t I seen that happening crime as well. Don’t they, they interview, don’t the criminals or when they interview potential criminals they employ people like you to do that as well?

Jemima Dooley:

[laughing] There’s lots of people working in lots of different fields; in mediation and as

Well

Adam Smith:

Counselling, marriage counselling

Jemima Dooley:

Sales, there’s people working…Exactly in sales there’s people working on how to be you know, less fake and…

Adam Smith:

So you are on the light side as opposed to the dark side, the dark side of us

Jemima Dooley:

No [laughing] it’s all the light side everyone, and all researchers are good heart

Adam Smith:

Have you got a sideline going in sales as well, no?

Jemima Dooley:

[laughing] No, no I don’t. All my research is in house so

Adam Smith:

But you have no problems getting your partner to do everything you want? [laughing]

Jemima Dooley:

I wish it worked like that, it’s more in arguments, I’m like ‘you said that because I said this’ and he doesn’t appreciate that at all.

Adam Smith:

And you can remember everything

Jemima Dooley:

But yeah so my research is in, so my PhD was in how doctors deliver dementia diagnoses and I’m now doing a fellowship that’s exploring how decisions are made in out of hours primary care so around urgent care decisions

Adam Smith:

That’s fascinating, so you’re PhD looking at that, are there any outputs, because that’s really interesting, I know quite a lot of our listeners are kind of clinical focused, is there any outputs of that that people should go have a look at?

Jemima Dooley:

We have done so there’s a paper in British Journal of Psychiatry and we’ve done sort of work with Royal College of Psychiatry workshops and things, so we’re just, a funding application in to, to try and make it into a more sort of broader guidance and put it out there more because it is, yeah it’s a complex area, it’s a difficult thing to do, it’s challenging for doctors and it‘s obviously very difficult for the people dementia and their carers as well.

Adam Smith:

Well yeah, not just in dementia as well but of course in everything…

Jemima Dooley:

…yeah in everything

Adam Smith:

Fantastic, well thank you very much, and thank you again for as I say, for inviting me along, I know I kind of invited myself but I am really grateful, and they did a good lunch, so [laughing] it’s always good to have an excuse to come to Bristol, we’ve avoided the environmental protests today, we had a conversation today about naked bike rides as well.

Jemima Dooley:

That’s what we’re up to later, yeah

Adam Smith:

We’ve avoided that, so far

Sarah Griffiths:

We weren’t trying to avoid the climate protest, let’s just say that!

Adam Smith:

Just the noise, just the noise while recording, yeah [laughing]. So tell me how, Sarah maybe come to you first of all, Sarah how did this group come about, how, why did you think it was needed?

Sarah Griffiths:

It all kind of sprang from the fact that we’d all written blogs exploring the challenges around involving people with dementia in qualitative research and I think all three of us have got experience in what you’ve just been talking about, conversation analysis.

Adam Smith:

So the three of you found, found each other having kind of put some, put things out there into the, into the internet and social media and through your publications, you found each other

Sarah Griffiths:

Yeah, so I was aware of Anna already coming from such a similar background so we’d kind of both kind of moved in the same research worlds, and I was aware of Jemima, but hadn’t met her so I think the fact that we all can have wrote blogs on a similar topic and then got in touch with each other afterwards sparked a conversation and the fact that we’ve all got this kind of background in conversation analysis, but we’ve all got, also got experience of other qualitative methods like interviewing and running focus groups and so on, which take slightly different perspectives and we thought, we had a chat and then we thought it’s be really, really helpful to involve other people, and perhaps form a special research interest group for people that are interested in this area, specifically about how to involve people dementia themselves in qualitative research and not just kind of focusing on getting the viewpoint of carers or wider family or practitioners.

Jemima Dooley:

I think, yeah all of our work that we’ve done with people with dementia, and when I’ve worked on projects sort of co-produced for people with dementia and you know lots of people say that interviews and focus groups are very sort of scary environments and you know it sits on the researcher’s terms and you ask the questions and and then you have to quickly think of an answer and people with dementia will have very often difficulties with producing language and processing language and remembering and its it’s a challenge and I think we but that doesn’t mean that they don’t have things that they should be heard in qualitative research, and you know, so I think we all sort of, that’s all the sort of things we’re all thinking about weren’t we?

Sarah Griffiths:

mmm, mmm

Jemima Dooley:

And you know, I think lots of qualitative researchers will adapt the way that they’re working for people with dementia to include them. But we thought it would be great to have a kind of a group where we could kind of bounce those ideas off each other and talk about what we’re already doing. And yeah, try and get some more

Sarah Griffiths:

It’s not as though people aren’t kind of writing about this because

Jemima Dooley:

yes, yes

Sarah Griffiths:

There’s a lot in the literature at the moment about kind of innovative ways using sort of creative arts-based methods of including people with dementia in research, but what we found really helpful was to try and sort of talk about how we’re translating those findings that guidance in the literature into what we’re actually doing and how we’re reflecting on whether it works and what the challenges are.

Adam Smith:

And this is what’s really interests me, so we’ve had quite a few podcasts now over the last 18 months, where the people have come together and talked about the importance of collaboration. This idea, particularly that people who ah work in different fields have these opportunity to come together, that there’s no silver bullet for dementia, particularly, and I can I can absolutely see how, and whether that’s conversation analysis or and communication challenges, that the things that you’re learning in that research field will be absolutely invaluable to, I mean not even just other qualitative researchers, if you’re a, if you’re a clinician delivering a drug trial trying to understand how you communicate what the symptoms might be or understand what the feedback people are giving about how they felt while they’ve been taking that medication or how they, going back to qualitative, how they, their experience of living in a certain way or trying out an intervention this is, this is ground, I mean I think, I could see a good argument for saying all research studies should have somebody with your background…

Jemima/Sarah Griffiths:

Well, that’s what we like to say!

Adam Smith:

On the trial kind of steering groups, but, so let me just, let me just get this right then so, you all knew each other through, through social media and conferences and through your publications and decided that you thought it would be good to actually have a physical meeting where you talked together about your work and but you haven’t just limited it to people with your own, you know your own backgrounds have you, so we’ve, we’ve had the meeting today has had about 10 people at this today, you advertised it through social media and so, so tell us more about, about why did you think it were needed and why did you broaden it out to others?

Jemima Dooley:

Yeah I think so, we were just, well we first spoke a few months ago didn’t we, sort of by email. And said oh this will be a great thing to do and it would be really nice to hear more about what you’re doing and we should meet up and then I think it was only just a few weeks ago we thought actually we should try and just broaden this out and try and hear more about what everyone’s doing and it was just one tweet and it just got so much traction and so much interest and it was only sort of a couple of weeks ago and it really, you know, went off and we managed to just get 10 people just from Twitter and they were people who could attend in Bristol on this day, you know.

Adam Smith:

With two weeks’ notice

Jemima Dooley:

With two weeks’ notice [laughing] which is, yeah , and we had, so it was I think we’ve really, it’s really, it’s got me excited I think that it’s really something that people felt there was a gap for and that they, they would want to get involved in.

Sarah Griffiths:

I think it’s quite exciting as well, that just from the group of people who came today there’s such a broad range of interests and background experience of working on very different types of research projects. There was some interesting people who have been researching communication in care homes; one of the researchers talked about the links between hearing loss and dementia and particularly…

Jemima Dooley:

Other therapies, care

Sarah Griffiths:

Yeah, technologies, use of technology, all sorts.

Adam Smith:

And, and I can see that, I’m looking down at the table as there’s a flipchart piece of paper with lots of aims and ideas, so I think today’s first meeting was very much a bit of a brainstorm wasn’t it?

Jemima Dooley:

It was

Adam Smith:

Where you kind of talked about ‘right, what could the outputs of this group be, what, what were people’s own interests, what did they personally want to get out of this, what opportunities work’. And there’s, there’s quite a long list here, I mean you can see how, how this is, you know, got so many opportunities. Why don’t you just go through and tell us a little bit about, about what sort of things the group wants to be involved in?

Sarah Griffiths:

Shall we do half each?

Jemima Dooley:

[laughing] aha, good idea!

Adam Smith:

Go on, Jemima you take the left half of the paper, and Sarah you take you right [laughing]

Jemima Dooley:

I was thinking we could start with the innovative methods stuff because that’s something we’re all very interested in, in terms of thinking of different and creative ways to include people with dementia in research, and not only just in terms of collecting qualitative data on you know opinions and preferences but also in terms of getting consent, in terms of you know, PPI, just ways to get people to express their opinions that isn’t just a typical focus group or interview. And we had talked, we were talking about…yeah, exploring communication with this, we were talking about how it’s different in different stages of dementia, you know it’ll be different in nursing homes compared to people just post-diagnosis and then we’d really like to think about how you can evaluate these methods and things like that; that’s something we’re interested in.

We had, yeah, one of the main, I think, points of this group is we were talking about before was sharing and collaborating, and yeah, sharing things with, you know, we’ve read, things we’ve published, things we’ve tried and what has worked and what hasn’t and that sort of thing.

Adam Smith:

So , you’re going get a little group going, we talked about Whatsapp a little bit…

Jemima Dooley:

…we talked about Whatsapp

Adam Smith:

…and the potential for websites and forums and other things

Jemima Dooley:

Exactly

Adam Smith:

To, to collaborate and share things with each other, that’s cool

Jemima Dooley:

Yeah definitely, and then just anything that we just think about, try and make it sort of easy and clear as possible, ways to just, you know, you can just send something off and everyone can benefit from that.

Adam Smith:

And I think that’s quite important because I know that that we’ve talked about this before that that since there’s been so much dementia research kind of sprung up in the 8 years since the funding has become available and there’s been more interest that there are quite a lot of people working in researchers working in quite isolated ways, in universities that haven’t necessarily got lots of other people working in dementia in their way and I think, and we would like to think that dementia researcher website’s helping to kind of bring people together but groups like this as well, which are just self-started have got real opportunity to do that.

Jemima Dooley:

Well, it’s sort of sub groups within it isn’t it, because dementia researcher’s great, because it’s obviously we’re you know mostly early career researchers or people working on their in in dementia research but there is so many different types and so many different things so there …

Adam Smith:

Absolutely…

Jemima Dooley:

… so it is just sort of a way, that’s why this podcast is great in terms of getting things out there and yeah, no, it’s exciting that the idea that we can start to share things more and

Adam Smith:

So, opportunities for sharing. What else was on the

Jemima Dooley:

So the next one we had was to do with including people with dementia, in terms of, yeah like a bit with the innovative methods in the terms of thinking about every stage of the research and coproducing. We spoke a bit about how it’s difficult, you know, there might be core people in PPI groups who are sort of the white, middle-class, educated types of people that might take part and how to, you know, increase that

Adam Smith:

How to broaden the reach of the research you’re doing

Jemima Dooley:

Exactly, and then just a bit about the times and funding challenges and and, then we had an interesting discussion about, you know, how you could evaluate the therapeutic benefit of taking part in research for people with dementia and how yeah, that might be a way that qualitative research could explore that.

Adam Smith:

I think that’s really good as well because I mean then that some publication like that, or some evidence on that basis would give a really good argument, because, the NHS, you know I know in my, the other part of my job, we’re always kind of trying to persuade the NHS services and others to take time out to talk to people about benefits of research participation, having some real evidence to point to, say, you know the these are some of the genuine benefits that people have fed back in a qualitative way rather than just saying ‘oh it’s good for you, you’ll get access to treatments’, I think having that evidence would be really useful.

Jemima Dooley:

Because we definitely get it anecdotally like you know clinicians are like ‘I was really glad that I could point them to your research projects, there’s nowhere else to point them after diagnosis’ or something like that, and you know, and people have said to us you know it’s been really great it’s made us get out the house and things, but you’re just being able to measure that in in that terms would be really interesting.

Adam Smith:

I agree

Jemima Dooley:

I don’t know where we’re going to split now

Adam Smith:

Sarah, yeah, well you can pick up, what were the…

Sarah Griffiths:

Yeah, I think that might provide a nice link into one of the other themes we thought about which was well being. So we talked a bit about kind of the well-being of both people with dementia taking part in research and carers and wider family and also kind of the well-being of researchers because often when you don’t qualitative research you are encouraging people to share sort of quite powerful stories with you and sometimes it can unleash sort of quite emotional feelings in both the participants and the researchers, so we felt that maybe that was kind of quite a strong focus for our group as well, and how we deal with that and how we support participants in researchers in that area and then another focus we had was really around increasing awareness of qualitative research itself because we feel that there are a lot of people who could potentially take part in research that might really not understand what qualitative research is and might have much more understanding and experience of traditional trials, drug trials, and other kind of simple interventions, So I think a strong focus will be about you know kind of increase, increasing awareness, spreading, spreading the word, maybe contributing to conferences we’ve already talked about and identified some particular conferences that we might contribute to as a group and then finally we ended up having a really good conversation about ethics, which just kind of sprung from our chat about how we adapt some of our study information for people with dementia and carers and we talked about how there are certain kind of expectations from some kind of ethics committees about what is required in terms of information needed and how consent is obtained and how we can adapt those methods.

Adam Smith:

Yeah, we’ve done a podcast on ethics before and I’m sure we could do lots [laughing], and we’d find something new to talk about every time I think, I think, particularly in your field of research, I think ethics plays an invaluable role and it’s quite interesting to hear some of the feedback that people gave today and I think they’re certainly a lot of opportunity there again for having some qualitative researchers just share their stories, their case studies about their experiences and what tips/advice that they’ve learnt from getting their studies through that process and then what they’ve learnt after getting ethics to what they’ve had to change I think would be great and dementia researcher’s quite happy to share that for you…I, I mean, like I say, having just attended this meeting, I thought it was, it was really interesting. What was clear was everybody who came with a fairly open minds about what to expect. I think they went away quite enthusiastic. Everybody contributed really well to suggesting what you all might do, what you could achieve through working together and I think, I think one of the reasons why was keen, as I said, to record this podcast was because I think this is a fantastic example of what I’d like to see, and I know others would like to see more of going on around the country, which is bringing people together with these special interests working together and encouraging these collaborations across institutions, and not just looking internally to the same you know the same group of colleagues that we all, you know, we all work with. But also self-driven, that this isn’t driven by some agenda that is being forced through from the NIHR or from one of the charities in saying ‘oh we’re going have a group’, that this is a you know, you guys just thinking ‘hey wouldn’t this be a good thing to do, let’s do it’ and I know that’s all very nice and there are probably lots of people listening going ‘yeah if only I had the time, that’s, how nice, how luxurious to have the time to just create a meeting’, but…

Jemima Dooley:

But it just didn’t take any time, did it? We had a few, we exchanged a few emails, sent a tweet and then I booked this room which took me about 2 minutes and then, you know, it was, yeah.

Adam Smith:

We got an agenda and then

Jemima Dooley:

Yeah, and it was, it was, and it’s been, you know, it’s, every time I go to a group like and everyone’s like ‘oh we should do it more and I work on my own’ and yeah, it is a great way of…

Adam Smith:

And that’s definitely a takeaway messages is, is you know, don’t be scared of this, it won’t take lots of time, but just, just find a friend and make it happen…I think, you know, it’s just like writing until you know you can’t sit there and think about it, you’ve just got to get on and do it and I think the agenda and what you’ll talk about will emerge from the group.

Sarah Griffiths:

Yeah, and for the first meeting that didn’t need to be too much of an agenda, it just kind of happened organically that we already had loads to talk about and came up with these aims.

Adam Smith:

So, so what next? This is the good question, obviously there will be some researchers out there, both in the UK and overseas, about half our listeners are overseas. Is there an opportunity for people to get involved in your specific group, assuming that there not going to run away and set up their own [laughing] are you inviting, inviting people to become further involved?

Jemima Dooley:

Yeah, we certainly are, yeah , we had so we’ve had people skyping in, we’ve had interest from research yeah we had and so we’ve had interest from Australia and we really would like to do that, I think that’s a great way of, we don’t want people to be restricted and you know it’s early days, we don’t have much funding for travel and things like that, if people want to Skype in, if they want to wherever they are, they’re very welcome and going set up a mailing list and maybe a Whatsapp group and just so that we can, yeah, keep people in contact with each other, that’s definitely the plan isn’t it?

Adam Smith:

That’s very good, and I mean obviously there’s a lot more detail we can go into, I mean, we spent quite a lot of time about taking about what you might call yourselves [laughing]…

Jemima Dooley:

If anyone has a name! [laughing] and fells like contacting us…

Sarah Griffiths:

Yeah, we didn’t decide…

Adam Smith:

It has to have the word qualitative, research, dementia in it…

Jemima Dooley:

demenitas or…

Sarah Griffiths:

creative…

Jemima Dooley:

or innovative…or yeah, we were struggling

Adam Smith:

So side-tracked by name for a little while but I think you’re going to meet a few times a year and keep things going through Whatsapp and online as well

Jemima Dooley:

That’s the plan, yeah

Sarah Griffiths:

We think twice a year might be realistic for people. The next one we’re planning will be at UCL in London so we’re busy working out what we’ll cover at that meeting.

Adam Smith:

And I think by the time you’re listening to this podcast in a few days’ time, I know the three

of you, Jemima, Sarah and Anna, are going to kind of work on a blog as well to have something to go alongside the podcast, so, honestly, I think congratulations. This is, I think, fantastic. I think it’s a good model for others to share and I think we’re going to pay close interest, we’ll try and help you with dementia researcher to provide a platform for sharing your outputs because I know lots of our listeners will be interested, so we’ll, we’ll continue to be involved. I think I’m going to wrap today’s podcast up now. But just before I do there’s one question I’m going ask you, which is:

What would be, you’re both experienced researchers now both finished your PhDs and I’d like to ask what would be your top, your single top tip, for a new to the a new to academia, qualitative researcher? Go on Jemima, you go first.

Jemima Dooley:

I think that the single top tip is to be willing to adapt and to think of everyone as an individual that that you’re meeting with. It’s very much so you know, this is how you do qualitative research, you set up a topic guide, it has to be worded, each question has to be worded perfectly, it has to be open-ended, it has to be this, it has to be that. And I think you know just go into the room, meet the person and get a feel for who they are and what it’s interesting and yeah, and it’ll just go from there. And once you start thinking in that way about it and that you just want listen to them talk and hear what they say, rather than, you know, question answer, question answer. It’s much more fun and more productive I think, so yeah.

Adam Smith:

That’s very good is very good, Sarah?

Sarah Griffiths:

I would have said exactly the same thing [laughing] in terms of

Adam Smith:

You can have the same top tip [laughing], that’s ok, it doesn’t have to be different

Sarah Griffiths:

But yeah, so just prepare but prepare to be flexible, so anything you’re preparing in advance bear in mind that unpredictable things will happen and to be flexible and you will learn as you go along, and the other thing is to just reflect…

Adam Smith:

And relax about that as well

Sarah Griffiths:

Yeah, and that’s normal, just do lots of reflection. Maybe keep a researcher diary, so you can look back at how much you’ve learned and adapted and just be a curious person who’s really interested in what other people think and you can’t go far wrong.

Adam Smith:

And Sarah and Jemima are both available to be mentors I’m sure [laughing]

Thank you very much, Sarah and Jemima for inviting me today for this fantastic group you’ve created and for joining us on today’s podcast. You can look at our website for profiles on both of our panellists and Anna who’s not with us today. As I said we’ll have a blog later, in a few days’ time, sharing as well and I’m sure both of you can be contacted through, do you want to tell us your Twitter names so you can be found through Twitter.

Jemima Dooley:

What is my twitter name, I think @drmimadooley, yep, I think if you search Jemima Dooley I’m there

Adam Smith:

It’ll be in the link, the link below podcast as well and Sarah –

Sarah Griffiths:

I think mine’s @SGriffiths1966, which rather gives away how old I am [laughing]

Adam Smith:

That was just England winning the World Cup right [laughing] that was nothing to do with

Sarah Griffiths:

Exactly, I’m proud of that birth date! [laughing]

Adam Smith:

Thank you, Jemima and Sarah and thank you to everybody for listening today. If you have anything to add on this topic, please do post your comments below on our website or in the feeds that you’re listening to whether this is iTunes, Spotify or Soundcloud. Please do share on Twitter, using the hashtag ECRdementia. And finally, please do subscribe and leave us your comments and reviews we’re always very welcome for those, thank you very much and will look forward to seeing you again and sharing more about this group another time.

Sarah/Jemima Dooley:

Thank you!

Voice Over:

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END