Podcast – The practicalities and realities of doing qualitative research – ethics on the move

Voice Over:

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

Lakshini Mendis:

Qualitative research methods are the best for researching many of the why and how questions of the human experience. But early stage researchers are not always fully prepared for the challenges that go with conducting this type of work and sorting the ethics behind conducting these studies.

Lakshini Mendis:

So today we’re talking about the practicalities and realities of doing qualitative research. My name is Lakshmi Mendis, and I’m the research project coordinator for the National Institute of Health Research, based at University College, London. I’m delighted to welcome first time panellists Sarah Wallcook, and our regular contributor, Yvette Vermeer, to today’s Dementia Researcher podcast.

Lakshini Mendis:

Sarah is a doctoral student who’s over from the Karolinska Institute in Sweden, and Yvette is a PhD student and sociologist based at UCL. They’re both part of the interdisciplinary network for dementia using current technology or INDUCT program, and they’re both here to share their experience about conducting qualitative research. So welcome both.

Yvette Vermeer:

Thank you. Hi.

Sarah Wallcook:

Thank you.

Lakshini Mendis:

Before we get stuck into today’s topic, maybe you could just both tell me a little bit more about yourselves. Sarah, if we start with you.

Sarah Wallcook:

Great. Thank you Lakshini. I’m Sarah and I’m from the Karolinska Institute, but originally I’m from Cumbria, up in the north of the country. And I’m really interested in how we look at qualitative questions, but within rural contexts, so I’m interested in the challenges of doing rural research. And my studies are on the access and ability to use everyday technology among people living with and without dementia in Cumbria, London, and in Sweden.

Lakshini Mendis:

Great, thanks. And are you receiving any funding for this work at the moment? Who’s funding your research?

Sarah Wallcook:

Yvette and I are both funded through the same funder. So this is the Marie Curie ITN, Innovative Training Network. And this is the grant through Horizon 2020 with the European union.

Lakshini Mendis:

Okay, perfect. And Yvette, I know our listeners have probably heard about your work, but if you can remind us about what you’re studying.

Yvette Vermeer:

Yeah, of course. As you might hear from my accent, I’m originally from the Netherlands. And I started here in UCL. And because I’m also part of INDUCT, that entail that I also got an opportunity to go to the Karolinska Institute. So I’m interested in the needs from people living with dementia and family caregivers with our surveillance technologies, for example, trackers or even alarm buttons. And I would like to know what they need in these technologies, and what kind of impact these technologies can have on them in order to see whether and how we can empower them. So I focus on people ageing at home who want to remain in their own homes. And I’ve focused my study on the Netherlands, but also I did a bit of work in Sweden and mostly in the UK.

Lakshini Mendis:

Okay, great. Thanks. So as I mentioned before, you’re both part of the INDUCT program. Can you give us a background about what INDUCT is to our listeners who might not be familiar with it? Yvette, do you want to take this one?

Yvette Vermeer:

Well basically we already covered okay we actually are from a certain country but we moved to a different country, and within INDUCT we got the opportunity to also do our research with another organisation. And this organisation could be, in my experience, the example of a university, so the Karolinska University, but it could also be with businesses. And the aim of INDUCT is to train early stage researchers like us to become involved in dementia research with all the help we can get. So, from universities and non-profit organisations in multiple countries. And that’s why it’s European funded.

Lakshini Mendis:

Great. So were you part of the INDUCT program right from the get go when you started your projects? And how long has INDUCT been around for?

Sarah Wallcook:

Yeah. So INDUCT started its funded period back in March 2016 I believe, and then it will have been before that though all the applications were going in. And then we were recruited to start in September 2016. So our projects that have formed were skeleton outlines, and then we’ve been involved in fleshing those out and then making those projects our own. And we’ll execute them over the next three years for some people, and in Sweden it’s a four year PhD, so some of us will be a little bit longer in the making as well.

Lakshini Mendis:

So talking about your research studies, maybe we can discuss a little bit more about what goes into conducting a piece of qualitative research. So is the ethics a good place to start? Is that where you’d start putting a study together?

Yvette Vermeer:

Well that’s how I started.

Sarah Wallcook:

That’s how I started too.

Yvette Vermeer:

I immediately got the idea, okay, my study will be about to needs from users. So basically I have to ask them what they need. I wanted to do focus groups from the beginning of my research. So I started with the ethics application. Of course, never have done this in the UK, I didn’t know what a big challenge this was. But I also wanted to involve people in Sweden and in the Netherlands. But in Sweden this was difficult because I’m not Swedish. And yeah, a lot of things had changed, and the one in the UK was so time demanding that I also just had to drop something, which was a pity, but then again, I have so much information and I did a PPI group show, including people with dementia as advisers. So they’re all the ways around. But I definitely started with getting my ethics. Yes.

Lakshini Mendis:

So then do you think that actually that process of getting your ethics sorted, it makes you think more about how you’re going to be conducting your study, and the practicalities around doing that and stuff as well?

Sarah Wallcook:

Absolutely. Yeah. I mean, it really helps you to get the ball rolling with setting up lots of partnerships locally, and getting in touch with organizations, and really engaging them from the outset in what it is you want to do, the purpose for it and how you hope that lives will change as a result of it. I mean for me it was slightly complicated by being based in Sweden at the time. So I couldn’t just knock on people’s doors and go and have a chat, “I think it might work like this or I think it might work like that.” So that was an added complication.

Sarah Wallcook:

And then you also need legal representation from an organisation in the UK. And that’s where my collaboration with UCL is really much deepened and really helped by that as well. And it’s also very useful to have supervision from an organization in the UK that understands things like the Mental Capacity Act and the challenges around the governance of research in the UK, because you really want that practical support on the ground as well.

Lakshini Mendis:

Great. And so what do you think your top lessons are from going through that process then, for early career researchers who are maybe at the start of their process?

Sarah Wallcook:

I think for me it’s about being open to changing your plans, and really working with people. I think that process of engagement and involvement can start as early as possible, and people can have a say in how you intend to recruit.

Sarah Wallcook:

They’ve got a better idea of how it will work inside their own systems and their own capacity, what they’ve caught a time for. And what mediums they need to be handing out to people, and when they need it, what time period, what lead in they want for that sort of thing. So these are all really useful conversations to have in advance, but sometimes it can be a bit chicken and egg. So it’s like trying to understand how we make the egg together before we create the chicken.

Yvette Vermeer:

Yeah. Talking about the chicken and egg thing, I had such a set plan before I began, and I made all my questions. And luckily, because I have previous experience with doing focus groups, I was able to get this through the ethics committee. But actually in reality when I asked those questions I didn’t get the response I thought I would.

Lakshini Mendis:

Right, that’s good to know. So focusing a little bit more about your actual studies now. I think we got a brief overview, but can you highlight what qualitative methods you used to answer your research questions?

Sarah Wallcook:

For me it was semi-structured interviews and [inaudible 00:09:22] the theoretical sampling. So a lot of my research is actually statistical in nature. They’re standardized questionnaires. But from the responses in those questionnaires you get quite a lot of rich data already, about the person. And as I mentioned it focuses on technology. So in those questionnaires people are telling me about the technologies that they use. I talked about everyday technology before, so often people think about their more sexy technologies, touch screens and this, that and the other. But I’m talking about hand stick blenders and microwaves as well.

Sarah Wallcook:

So I can really pick up from the person what in a general sense we might think of as mundane aspects, but for that person it might be really important. And as an occupational therapist, that’s what I’m really interested in. What’s important to that individual and what connections do they have in their environment. So I was able to come back with this semi-structured interview for a sort of theoretical sampling process done through all the rich data that’s gathered in the first structured parts of it, to have a much more open conversation, and just had some fabulous conversations and really interesting stories from people about their relationships with technology.

Lakshini Mendis:

That’s awesome. Yvette, what about you?

Yvette Vermeer:

Well, I already said I did focus groups, but I also did some online discussions with people with dementia and family caregivers. And besides asking about their needs, I also looked at the surveillance technologies and how they are being sold online. And what this included was looking at pictures and websites, doing a thematic analysis. So looking at what sort of science do they use to try to sell these surveillance technologies. So very, very qualitative. Yeah.

Lakshini Mendis:

So I guess, because you almost have a couple of approaches then there in terms of the methods you’re using, can you talk about how you planned for the recruitment process and then the data collection of it? The practicalities around that, doing semi-structured interviews and focus groups, and I guess the logistics behind that as well.

Sarah Wallcook:

Well I think for me it was developing these close partnerships with the NHS locally. They were so open and they talked about how a lot of the clients that they were working with as occupational therapists don’t get much of an opportunity to take part in research. And a lot of them were asking, really wanted that chance to do it, really wanted to be listened to and be able to contribute in a positive way when you’re faced with quite a difficult diagnosis.

Sarah Wallcook:

So for me, what I really wanted to tap into was their passion for getting people involved. And then for me the recruitment process was about how can I make it easy for you? And then connecting in with local community groups, because as I mentioned it’s also people without dementia. So whilst all the people with dementia did come through the NHS, the voluntary groups, the Cumbria Dementia Strategy group and the Dementia Action Alliance were really instrumental in helping me get hold of the comparison groups of participants.

Lakshini Mendis:

Great. And Yvette?

Yvette Vermeer:

I got help from Alzheimer Europe and Alzheimer Netherlands. And recruitment for me was difficult. I would suggest also early stage researchers to aim high. So my aim was to have three focus groups. In the end I had so many last minute cancellations, and that’s not because they’re not interested, they all were, but especially family caregivers had last minute things coming up, because they care for someone of course 24/7. So for me it was very much about acceptance, and that’s also the reason why I planned beforehand to do the online discussion so that at least I would have some data.

Lakshini Mendis:

No, that’s a good point. I’m just going to plug in Join Dementia Research here, if you’re recruiting more UK based studies. I know Sarah and I talked about when you’re doing maybe an international collaboration, I don’t know how easy it is to use Join Dementia Research as a resource to find participants. But definitely for UK based studies we’ve had a lot of positive feedback. So just my little plug there. And in terms of locality, I mean Sarah, obviously your heart is in Cumbria area. Is that why you did the majority of research based in the area? Because we chatted about maybe participants in the area not getting the chance to be involved in this kind of dementia research as well.

Sarah Wallcook:

Absolutely. And I think when we think about things like the technological divide or the urban rural divide, it kind of comes across in different ways. And so it’s important for me that I could look at that rural picture and compare it with an urban picture. Do people in where rural areas relate to technology in the same way, use it in the same way, for the same purposes? Does it mean the same things to them? Does it present the same opportunities? What challenges go along with it, what barriers? And whilst some of those more qualitative aspects, it’s not going to be possible for me to compare with an urban sample, but on that pattern level, when I look at the statistical stuff, I will be able to see whether or not there’s any differences. And I think it’s quite reasonable.

Sarah Wallcook:

When I’m driving to a client’s appointment, I’ve come across the top of the fell and all of a sudden my phone thinks I’m in the Isle of Man and starts charging me roaming. And it’s things like that, there’s just pockets where you can’t get access to the internet, or you can’t get on your mobile. And that increases the challenges as well, of working in rural areas. You know, if you’re suddenly stuck with a flood or whatever and you got no reception, you cannot get hold of the person that you’re trying to meet up with.

Sarah Wallcook:

So word of mouth is much more important in these areas. Trust and relationships tend to be vital to it working as well. So for me it was good to be able to go back to an area where I feel like I’ve got those relationships in place and I can build that trust. I understand a little bit of how it is to be a rural person and I can bring a bit of that with me.

Lakshini Mendis:

That’s great. And Yvette, do you find it challenging? Like you said, you’re from the Netherlands, if you’re trying to build that trust aspect, does that come into play?

Yvette Vermeer:

What do you mean with the trust aspect?

Lakshini Mendis:

So with your participants when you’re in recruitment and getting people to join the study and things like that. Does that come into play, locality and where you’re based?

Yvette Vermeer:

Yes, sorry. There’s a very bigger story than I have time to talk about, but I actually did my focus groups in the Netherlands, because I couldn’t get it done here in the UK. So definitely locality is a big thing for me. Yeah.

Lakshini Mendis:

Okay. I think that’s something to remember then, and keep in mind I guess as well. So yeah, setting up the study for the first time can be challenging, particularly if the idea you’re trying to research is new to you, is quite an innovative kind of study. And there are obviously lots of sensitivities around involving people with dementia as well.

Lakshini Mendis:

I know, Sarah, you come from an occupational therapist background so maybe you had those skills, but if you’re in an early career stage and you’re maybe not as skilled with working with this group of people, that’s maybe something to get your head around as well, as you’re conducting these studies. So do you have any advice for preparing for the data collection methods around what you can expect? Do you do any practice with your colleagues and things like that?

Sarah Wallcook:

Yes. I think it’s really good to practice, but I think one thing that’s interesting to touch on in this conversation is the idea of preparing for the unexpected. Because I think I’ve reflected a lot of going do I really agree with that concept? Can you prepare for the unexpected, or do you just want to allow the unexpected to be unexpected? All types of people are unpredictable. You don’t want to know what they’re going to say or how they’re going to respond, necessarily. If you could predict all that, what’s the point in doing it. But being really open and being really accepting, and for my research this has been all about believing what people tell me.

Sarah Wallcook:

Luckily we’re out of that phase of research now where people with dementia aren’t listened to as easily, or it’s thought that a carer might have a better perspective, or it needs to be counterbalanced in some way. We’ve all got different perspectives on our own reality and on somebody else’s reality. Maybe that becomes more pronounced in dementia and maybe it doesn’t, I don’t know. But it’s like respecting those different perspectives and allowing people to just speak for themselves, and taking what you find and running with it, I think is a really good thing to be able to do.

Lakshini Mendis:

That’s really good advice.

Yvette Vermeer:

Yeah, I would like to add something to that. I am someone that’s always fully prepared, and I even know, okay,, unexpected things will happen. Even though I have previous experience with working with people with dementia, I would suggest for early stage researchers to also have emotionally support available, because when I did the focus groups one moment we are laughing and it’s hilarious, and the other moment the participants were talking about suicide and that they couldn’t go on anymore. And I mean I don’t have a heart of stone, I also feel. I’m not saying this will happen for everyone, but yeah, you never know what’s going to happen. You work with people.

Sarah Wallcook:

I think that’s such an important point, Yvette. Even when I’m dealing with a subject like everyday technology, you’d never know when you’re going to like an emotional touch paper for somebody or it’s going to feel difficult. And for me as well it was about trying to be really open about, am I really prepared to walk away from this interview, after I’ve left the house at 7:00 AM, I’ve driven through floods and crazy rain and miles and miles, it’s taken me two hours to get here.

Sarah Wallcook:

And when I arrive on the doorstep, of course the person doesn’t necessarily remember that I’m coming today and they’ve got somebody with them who did not know I was coming today and is suspicious of me, this person, this family member. And I’m trying to analyse the situation really, really fast. Is this something I should step away from and be prepared to say, okay, today’s not the day, let’s do it another time, or do I work through it in the moment? And your emotions are complicated by whatever baggage you’ve brought with you that morning, and trying to be emotionally ready to step aside. And I agree, that’s when having somebody to call to just sort of talk things through, is really, really useful.

Lakshini Mendis:

Great. No, that’s really important advice I think. And something that maybe we don’t hear so much about as well, because you can get really focused on the logistics around it and things like that. So you’ve both raised a good point, about thinking about yourself as a researcher and how you mentally prepare for that situation.

Lakshini Mendis:

And so we’ve already talked about this, just handling challenging situations, because it almost never goes to plan, does it? So your biggest piece of advice is just being able to be flexible enough to go with it?

Sarah Wallcook:

Yeah.

Yvette Vermeer:

Yeah, just be a rock star. Just do it.

Lakshini Mendis:

That’s great. And you know, we’ve talked about the challenging situations, but what’s the better experiences. What are your highlights that you’ve gotten from doing qualitative research?

Yvette Vermeer:

Mine is easy. People were so enthusiastic and so empowered. They just wanted to become involved. It was amazing.

Lakshini Mendis:

That’s amazing.

Sarah Wallcook:

Yeah. The stories I heard. The hospitality of people. Their generous spirit and desire to share with you, even when there wasn’t necessarily lots of things to say, people would still be really generous about sharing with you their perspective. And it’s so touching to have that and it’s such a privilege to have that. And that’s why I think it’s so important that we go on to share those stories and don’t keep them away and things like that. My favourite one was poisoning the rats. Because this was a moment where I was interviewing a gentleman who was talking to me about a problem with the TV aerial, and suddenly this rat scurried up the bird table behind him. And that was it, I didn’t know what to do. It was like, “Oh, there’s a rat on the bird table. I’ve no idea what you’re saying anymore. I need to tell you there’s a rat.” So we stopped the interview and go outside and poison rats for a bit and take a walk.

Lakshini Mendis:

Yeah, I think personally that would have been a challenging aspect for me. [inaudible 00:23:42].

Sarah Wallcook:

I thought we were going to chase them away or something. But no, we just poisoned them, went for a walk, and came back and finished the interview later.

Lakshini Mendis:

That’s great. And maybe coming back to more I guess the logistics side of doing this kind of research. We were just chatting before about the travel that goes along with doing this kind of work. And obviously as part of the INDUCT program as well, both of you have done cross-continental visits and things like that. So how do you budget for travel and time, and how do you consider that aspect of things?

Sarah Wallcook:

For me it’s making sure that it is budgeted. And I’ve got a project management background, so we were used to making a 20% travel budget for everything that we did, and cost out what my time is per interview in a sense. So we would treat it in that way of trying to work out, so half a day here cost out was roughly that, 20% of that is this, and this is what I’m going to need to travel around this area and get this job done. And then for me that creates a sense of freedom, if I’m going to be okay here to work within this budget, because it can get really expensive-

Lakshini Mendis:

Yeah, I can imagine.

Sarah Wallcook:

To do all that travel.

Yvette Vermeer:

Yeah. And also what my supervisor recommended, what I really liked, is only go to conferences where you were able to give a presentation.

Lakshini Mendis:

Yeah. No, that’s good advice.

Yvette Vermeer:

Not just do visits. Okay, it’s not the best advice ever, but if you are low on the funds then yeah, definitely go for that.

Lakshini Mendis:

And maybe picking and choosing the ones that you think would be most beneficial to what you’re doing as well.

Yvette Vermeer:

Exactly, yeah.

Lakshini Mendis:

Awesome. So we’ve touched on a few interesting stories and really good advice. What’s your take home message for early career researchers who are listening? If you can kind of wrap it up I guess. Everything we’ve been chatting about.

Sarah Wallcook:

So me it’s try to enjoy it. Be open and generous in what you’re doing and you’ll reap that in return.

Lakshini Mendis:

Great.

Yvette Vermeer:

Yeah. And also just preparation. You can do preparation and try to do mock up questions or anything, just discuss it with your colleagues. But then again also be flexible with the unexpected.

Lakshini Mendis:

Awesome. So thanks both. I think well I’ve learnt a lot around the practicalities and realities of what doing qualitative research is like. It sounds like you’ve both got incredible projects that are going on, and yeah, I guess the biggest thing is to make sure you do the planning stage right, they’ll get your ethics sorted, your budgeting done, but then being flexible enough with the process and just kind of running with it. And I also think a really good point you brought up was just being mentally prepared for that data collection phase, and around making sure that you’re protecting yourself as well. And just having that support person I guess to turn to is really important.

Lakshini Mendis:

So, sadly that brings us to the end of today’s podcast. But I would like to thank you both, Sarah and Yvette, for joining us and giving up your time. I believe you’re both on Twitter as well. Are you happy for people to contact you there?

Sarah Wallcook:

Most definitely, please do.

Yvette Vermeer:

Yes.

Sarah Wallcook:

I’m @Sarah_Wallcook. That’s Sarah with an H, and my surname is W-A-L-L-C-O-O-K.

Lakshini Mendis:

Great. And Yvette, what’s your Twitter handle?

Yvette Vermeer:

Oh yay. I’m not good at spelling. That’s @Y_Vermeer.

Lakshini Mendis:

And your details will be up on our site with bio’s and stuff anyways, so it’ll be great. Listeners, if you have anything else to add on this topic, you can post your comments in our forum on the website. So that’s dementiaresearcher.nihr.ac.uk and drop us a line on Twitter using the hashtag ECRDementia.

Lakshini Mendis:

Please get in touch with us if you would like to come into the studio like Yvette and Sarah have done and chat to us about your own work.

Lakshini Mendis:

And finally, don’t forget to subscribe to our Dementia Researcher podcast. We’re on SoundCloud, iTunes, and even Spotify now, so it’s even easier to listen to our podcast. And don’t forget to leave us a review, preferably five stars of course, but that’s totally up to you. And tell all your friends and colleagues about us. Thank you for listening.

Voice Over:

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END