Methods Matter Podcast – Qualitative Longitudinal

Leah Fullegar:

Hello again, and welcome back to the Methods Matter podcast from Dementia Researcher and the National Centre for Research Methods, the show for people like me who didn’t pay enough attention during the methods lectures, or for those who did, but are looking for a new take on how to put it into use. In this series, we’ll be looking at five different research methods with an expert from the field under Dementia Researcher that has put this method into practice.

Leah Fullegar:

My name is Leah Fullegar, I’m a PhD student at the University of South Hampton and I research dementia care and faecal incontinence. This podcast came about when I got to my research methods section of my PhD thesis and realized, oh gosh, this is hard. So now I’m searching for answers. Today, we’re stepping back into the past. So, get your time machines ready and your grandparents on speed dial because it’s all about qualitative longitudinal methods.

Leah Fullegar:

Helping us today are two extremely well qualified guests, my imposter syndrome kicks in around about now, in the expert corner is Dr. Kahryn Hughes from the University of Leeds. Kahryn is the director of the Timescapes Archive, editor-in-chief of Sociological Research Online, convener of the MA Qualitative Research Methods and a senior fellow for the NCRM. Hi, Kahryn.

Dr Kahryn Hughes:

Hi, Leah.

Leah Fullegar:

Thank you for joining us again.

Dr Kahryn Hughes:

You’re welcome. I really enjoyed last time, looking forward to today.

Leah Fullegar:

Fantastic. It’s great to have you back.

Dr Kahryn Hughes:

Thank you.

Leah Fullegar:

And our hands-on researcher for today, an unofficial expert is Professor Andrew Clark from the University of Salford, Andrew has completed research on a wide range of topics, though he is particularly interested in three areas, neighbourhoods and communities, dementia and innovation and creativity in social science research methods. Andrew also lectures on research methods. So, we’re really lucky, really, really lucky to have two experts today. Hi, Andrew. Thank you for joining the show.

Professor Andrew Clark:

Hello. Thanks for asking me.

Leah Fullegar:

So, thank you both again for joining us, I’m sure we won’t have any blood spilled. So, what do I know? We began us off with the sidewalk do I know section, where I give a summary of what I understand of the method we’re discussing, which, of course, today is qualitative longitudinal methods, and today I’m feeling confident, I know I don’t sound it. So, when I think of longitudinal qualitative methods, I’m thinking of measuring things and experiences and outcomes that happened over time.

Leah Fullegar:

So, insights of that could be changes in attitude for an individual, I think that could perhaps be their health or how a disease progresses or how their experiences change due to time. Oxford Bibliographies tells us that longitudinal research refers to a family of research methods that involves obtaining repeated measures of variables from the same group of individuals over an extended period of time. Data are first collected at the outset of the study, and then may be gathered repeatedly throughout the length of the study. Kahryn, could you perhaps set me right and bring that rather formal description to life than introduce us to this method?

Dr Kahryn Hughes:

Yeah. And when we’re talking about qualitative research methods, I think I would take issue with the idea of measurement and that we’re measuring something over time. And I do use the language that Bren Neale uses, Professor Bren Neale who does write the books on qualitative longitudinal methodology and use the language of inquiry. So, it is absolutely, it’s a group or a family of research methodologies. It’s a very distinctive form of temporal inquiry.

Dr Kahryn Hughes:

So, it’s methodology that’s driven by and attends to temporal questions and temporal concerns such as social change, change over time. And it aims to shed light on those processes of change for individuals and groups and provide explanations for how and why those processes are unfolding in the way that they are over whatever temporal periods that is within that analytic frame. So, it’s very qualitative and it’ll draw on that traditional can of qualitative research methods, such as interviews, observations, ethnographies.

Dr Kahryn Hughes:

And I’m hoping that Andrew’s going to talk about some of the creative methodologies that he’s interested in as well around that little bit later. The sorts of concerns of those qualitative methodologies are additionally enhanced by this attention to time and change, so inquiry rather than measurement and absolutely a form of temporal analytic engagement. I hope that helps.

Leah Fullegar:

That helps me actually, because I think of longitudinal methods, and I suppose I instantly think of more quantitative things, and I don’t really know why that would be why I went for measurements instead of inquiry. So, I know that social scientists typically prefer longitudinal research over cross-sectional research designs. Do you have any sort of explanation as to why?

Dr Kahryn Hughes:

I think if you’re trying to understand change than what you are… That you do simultaneously a form of cross-sectional analysis in qualitative longitudinal study obviously you’re going to find out what’s going on at a given point in my study a given moment in terms of my data collection. So, you look across the data that you’ve gathered at that moment, and that might be a whole variety of data interview, data with the participants, observations, discussions with gatekeepers or key stakeholders, but then you bring that into dialogue with data that you’ve gathered at a different moment, at a different point in time.

Dr Kahryn Hughes:

And so, it’s trying to then observe differences, a host of different strategies around that, trying to understand what the continuity as well as the differences. And I think that’s a real challenge for qualitative longitudinal methods because there have been discussions around how far it is a sense of cross-sectional moments, as opposed to, again, using the language of a brand-new walking hand in hand with people over a continuous period.

Leah Fullegar:

That’s, funnily enough, what I was about to say, is that it sounds like a series of cross-sectional sort of analysis. So that’s interesting.

Dr Kahryn Hughes:

So, then you say then the challenge is how do we build in continuity? How do we engage properly longitudinally, properly in a longitudinal way?

Leah Fullegar:

So, would you say it’s a hard method to use?

Dr Kahryn Hughes:

I think that in all qualitative research, there’s a longitudinal component, we’re always going back in time to understand what other people have observed. We often draw on historical data in order to build comparisons and analysis. And we always talk in a temporal way, we tried to identify what is very distinctive about this particular moment in time, why we were searching for these people in these ways at this moment?

Dr Kahryn Hughes:

So, I think time and temporality is a fundamental character of any research. And I think that people often struggle mainly with trying to clean away temporary effects rather than engaging with them. So, I think qualitative longitudinal methodology is incredibly powerful, a means of engaging precisely with those temporal characteristics of social life. And we are, after all, temporal beings. So, it’s a really important methodology in that respect.

Dr Kahryn Hughes:

It depends on the sorts of claims that you want to make on how continuous your engagement has actually been? And of course, there are a number of studies under Timescapes. And I would direct people to the outputs and publications section on the Timescapes Archive website because that captures 15 years of people’s discussions and debates and reflections on how, and in which ways qualitative longitudinal research is indeed longitudinal.

Leah Fullegar:

It’s definitely like time travel then, especially if for some reason the word temporal always makes me think of like time travel and science of things.

Dr Kahryn Hughes:

I’ll just throw it right back here, Leah, and ask, how are things not? We’ve spent a period of time already in this podcast, there’s going to be, we’re at a different moment at the end of it as to the beginning, we’re just having to think about temporal scales. So that’s another challenge for qualitative longitudinal research of what are the sorts of temporal scales you’re engaging at? Because you might want to track somebody over the period of 24 hours. Or for example, in the Seven Up series, I don’t know how many decades that they’ve been tracking people. So, thinking through temporal scale is another question that people have to engage in, in qualitative longitudinal methodology.

Leah Fullegar:

That’s definitely something for me to think about. Andrew, is there anything you’d like to add to that?

Professor Andrew Clark:

I think I was listening to kind of how Kahryn was articulating what we refer to as QL. And I do I agree with what you’ve been saying. I think quite often, when I come in to QL, this question of time has always been something really interesting. And I actually kind of shy away from a language of tracking people in part, because I think it’s got certain connotations, but definitely that idea of wanting to follow through time.

Professor Andrew Clark:

I suppose what I would add is there’s this talk of this idea of time travel is really interesting and QL is not just about looking into the past, but also for me, the real exciting there is following forward, walking forward into the future, to use your Bren Neale’s metaphor, is the other bit I would add. Is it a hard method? It’s such an interesting question. We could spend ages debating is QL a method or actually an approach or even an attitude to understanding research, what we do.

Professor Andrew Clark:

I don’t know if it’s necessarily hard, but I think it’s certainly not straightforward. And I think sometimes QL can… People can be put off by the practicalities and oddly enough, the time that something takes and the number of resources and perhaps effort that’s involved. So perhaps not so much hard, but certainly complex.

Leah Fullegar:

That’s one of the things I would have thought about, about qualitative longitudinal methods are the sort of the time and effort it takes in a way. Staying with you, can you tell us how you’ve used this method in your own dementia research?

Professor Andrew Clark:

So, I’ve always been interested in QL. I’ve always been a kind of admirer of the Timescapes projects, and the debates and conversations and we were fortunate to receive from the SRC and NIHR to run a five-year research project, understanding how neighbourhoods are experienced by people living with dementia, and also how a neighbourhood setting can perhaps provide better support. And we were really interested in trying to understand neighbourhood life, be that kind of ideas of social connection, social networks, but also the physical and the material places of what a neighbourhood is from the perspective of people living with the condition.

Professor Andrew Clark:

We were also interested in getting beyond a snapshot in time. We didn’t just want a one-off understanding of someone’s experience of the place where they lived, for example, we wanted to try to follow through over a period of months, and we were fortunate over a period of quite a long time, how people’s experiences changed, but we also wanted to understand not just how an individual’s life changed, but also all the messiness and the complexity of the things around them, how that also changed.

Professor Andrew Clark:

So, we were also interested in what we sometimes refer to as kind of context changed as well. So, in my own research, we were interested in how people living with dementia experienced the neighbourhoods and how that changed over time, but also how the neighbourhoods changed over time and also how some of their locally situated social networks also changed over time. So, we deployed a QL approach. I have to say that it wasn’t just me all on my own though, as I worked with an amazing team of researchers and colleagues.

Professor Andrew Clark:

I feel like I really want to name check them, and I hope that people listening will forgive me, just to say that people like Sarah Campbell, Kainde Manji, Elzana Odzakovic, Richard Ward, and John Keady, we came together as a team effort. And actually, the idea of a team effort in qualitative longitudinal research is perhaps something I’ll end up reflecting on a bit more over the course of our discussion, but we undertook this research in England, in Scotland and also in Sweden.

Professor Andrew Clark:

So, alongside a time component, we also wanted to try to understand an international component as well. So, in terms of using the method, we devised a series of different sorts of methods or techniques to try to understand people’s lived experience of the neighbourhoods where they lived. And we took neighbourhood really from a very open idea. We started from, it’s pretty granular, but constructivist view of what a neighbourhood was. We didn’t decide in advance where a neighbourhood boundary might be.

Professor Andrew Clark:

And we undertook some social network mapping, some participatory network mapping to try to understand something of the social connections that people have. We also want to talk some walk-in interviews to try to understand how their lives might be and placed within local environments. And then we also undertook some home tours as well to try to understand something of how the home is also part of people’s everyday life.

Professor Andrew Clark:

The network mapping and the walking interview methods were probably the two bits that were the most formalized part of our QL approach, because we repeated both of those methods after around about 12 months, in some cases after 15 months, in order to try to understand something of the changes that have gone on. So, in a way, yes, we were tracking or following people through time. But what we also did was a whole series of additional interactions.

Professor Andrew Clark:

So, for me, I think QL is also about re-engagement with people, not necessarily using the same formalized or, dare I say, formulaic method to gather the… It’s not about gathering data at time one and data at time two to do some comparison of what’s changed and what stayed the same, but it’s also about dropping in and getting updates and kind of re-engaging with people. And I think in a dementia context, that was absolutely crucial, both to understand the lived experience of the condition, but also actually to allow us to do some of the more formal QL activity as well.

Leah Fullegar:

Yeah. That was going to be one of my questions actually. It’s just, did you have to have any sort of special considerations or adoptions when using this method in relation to dementia or neurodegenerative diseases?

Professor Andrew Clark:

I think you’ve always got to adapt your methods and your approaches to that particular context and the individuals and groups you’re working with. When it comes to dementia, I think perhaps the most obvious things to think about are twofold. One is around memory and cognition. We know that one of the symptoms of dementia challenges perhaps is remembering things with memory loss. It’s not the only symptom as listeners will be aware, but when you are engaged in a method that is about either trying to encourage people to think back about what has changed, then there are certain ways of thinking about how you’re going to do that in a way that are kind of authentic and also ethically appropriate for everybody involved.

Professor Andrew Clark:

And second, when it comes to this idea of following people through time means that as we returned to people, we couldn’t assume that people would necessarily remember that they’d been involved in the project. They couldn’t necessarily remember us as researchers. And we also can’t assume that they will necessarily remember some of the things they told us about. And so, what that means, I think, is that it raises certain questions about how you remind people, maybe of things that they’ve told you about, but also how you as a researcher perhaps are in possession.

Professor Andrew Clark:

You’re really privileged to have a collection of knowledge about somebody that perhaps I’m not as familiar with at the point that you then meet them. There are other issues to think about, another symptom of dementia is sometimes difficulties with physical activity, with walking, for example. And so, I walk-in interview method was something we really had to think about. Of course, we were really interested at it in those changes as well.

Professor Andrew Clark:

We were really interested in how somebody’s experience of dementia had changed some of its impact on their everyday life and their activities. So, some of those changes weren’t just about these are not challenges for the method to overcome, these are actually things that we were really interested in also trying to understand. And then that’s, before you start to think about some of the issues around consent, around ethical engagement, around ensuring that people are happy to continue to be involved in research over a longer period of time like this.

Leah Fullegar:

So, it sounds like that’s one of the reasons QR is so useful in dementia research, is those changes, like you mentioned, with the walking interviews and seeing how their daily life experience of the dementia progresses?

Professor Andrew Clark:

So, it’s definitely that, there’s definitely the opportunity to understand some of those changes. And also, as we came to realize over the course of the research, some of the things that have stayed the same and within that, the other thing that we all came to realize was really important is often the changes that people experienced or the changes that people lived through, or just about dementia. And the other thing we learned through QL is all the other things that are also in a state of flux, nothing is constant forever.

Professor Andrew Clark:

It’s also about being really mindful of how we can understand what is changing and why those changes have come about. And one of the things that really was pressed home to us is that the change isn’t necessarily because of dementia than changes in the condition. Often the changes that we observed, and the people experienced were because of lots of other things, aside from the condition that they’ve been diagnosed with.

Leah Fullegar:

The thing that’s popping into my head straight away is the amount of data you must produce in a QL study. I wouldn’t even know where to begin handling that data and everything. So now we have a description of what the method is and an example of how it’s been used. Let’s get into the detail and help anyone who is new to using the method. In this segment, I’m going to ask some quick straightforward questions to both guests on how to put this method into practice. Kahryn, the fast one is for you. How should someone prepare?

Dr Kahryn Hughes:

Again, I think this is really interesting and this sort of question comes up all scales always which is, what should I do and how should I do it? And we said, and it all depends on the question. So, what is it that you’re trying to actually achieve through the research itself? What sorts of insights are you trying to gain over which sorts of periods of time? And so, the corollary of that is really what is your question? And your question determines what sorts of claims to knowledge you’re trying to gain access to through your research process. What do you want to be able to say at the end of it?

Dr Kahryn Hughes:

So, in the very first instance, it’s about having absolute clarity about your intentions for the research and that will always come into dialogue with the sorts of pragmatics. Andrew mentioned about how time-consuming things are, but also, I think what’s absolutely critically is reflecting on the custom and abilities of the participants and the constraints that they experience in terms of participation with your research. So that dialogue between a sort of an academic set of aims, my research question, and who am I trying to speak to?

Dr Kahryn Hughes:

What is it that I’m trying to achieve? How might that be possible? What are the constraints on that? I think that those are epistemological reflections and what they do is give your insight into your study population into the questions that you’re trying to ask. So being very clear about your question, keeping a really, really good field of note diary of the sorts of decisions about how you’re going to put your research into play and having that very clear sense about the pragmatics of your research.

Dr Kahryn Hughes:

And then being very familiar with existing research and data in the field. And I think that those three things will really help you set up and be clear about what is and isn’t possible and why you are doing something or not doing something else. So, analysis starts with me, absolute outset.

Leah Fullegar:

And how important is the baseline?

Dr Kahryn Hughes:

Again, in qualitative, you’re using a sort of a language that is historical. This is that we’re going to take it from here, or what is here? What is when? Now when you get the funding, I mean, anyone who’s got funding knows that from the sort of like letter that you get. Yes, you’ve got the funding to the money arriving in the institution’s account, and then recruiting the people to the study. You can be talking months and months at a time, and things change.

Dr Kahryn Hughes:

Anybody who’s doing anything policy related knows that a period of eight months in academia, okay, things might not be quite so different. And policy, you might be looking at a completely different policy landscape, a different government, a different economic moment, cave its head, we’ve had a recession, so unstable. So, this idea of baseline is more of a case of trying to capture accurately or in as much detail as possible that situation, that context, and to use that language of context.

Leah Fullegar:

Baseline is more of an initial context.

Dr Kahryn Hughes:

But you’re also in QL and in qualitative research, again, always you’re trying to engage with the histories of things, how have things come to be? What are the conditions through which this situation has been made possible? That is our key question in qualitative research, why things like they are now? So, you’re asking people that. I think Andrew’s contribution as well, that QL is a prospective method. Namely, how might things be? What are your anticipations for the futures? And where do you think you might be?

Dr Kahryn Hughes:

That is something that’s, again, very distinctive in QL because our intention is to give them bind out a future moment, which we’re presuming that there’s going to be a moment at which we’re going to be able to speak to people again, but we’re absolutely providing methodologically for those sorts of futures. And I think that’s something that is in the bones of QR methodology, that provision for that future moment of investigation and engagement.

Leah Fullegar:

And what factors should you consider when trying to recruit?

Dr Kahryn Hughes:

This again, that’s an interesting one because as centuries’ research is demonstrating, not only might people be literally incapable of engaging with research, but they might not be there. I actually think Andrew would be a much better person to respond to this because he can tell us what he did.

Professor Andrew Clark:

I’m trying to think whether there is a difference in recruitment for QL work compared to recruitment for qualitative research more broadly. And when it comes to the start of recruitment, first of all, I think Kahryn’s right. There’s a kind of fallacy in thinking, okay, so we will recruit, start to get our baseline data. And I think there is still a real legacy, actually, from some researchers to think, we must get this baseline, and I think there’s a real tension.

Professor Andrew Clark:

And sometimes I think there’s perhaps a real emphasis placed on recruit as many people as possible, right at the start, because you need a good baseline. And if you don’t get that baseline, then the rest of your project is going to fail. And if you have a five-year study, then if you mess it all up in the first six months, you’ll never be able to do it again. And as I think back, one of the things I think about is to be less not to place too much emphasis on how many to recruit.

Professor Andrew Clark:

So, I think, how do you recruit? My response would be the same way you would always recruit for qualitative research. It’s about being able to explain what your project is about to people, but also being able to explain why a QL approach is necessary. What is it about change over time that you’re really interested in? I think recruitment is also about establishing some relationships with people really early on, it’s about assumption relationships with the research and potential participants and people who are around to support participants, that’s family and friends and people who may be run organizations or drop-in centers and support centers.

Professor Andrew Clark:

It’s about having a kind of community to support the research and through them is when you hope that you can start to recruit individuals who will become as infused as you are about the projects and see the worth or the value of contributing to a research project that might actually be a bit different to the kind of project that people are very used to. One of the things that our researchers spend a lot of time doing was explaining to people that we didn’t want to turn up and do a survey with people, which is very common for people living with dementia, that we wanted to follow them through time, that we wanted to come back and meet them.

Professor Andrew Clark:

And so, when it comes to, how do we recruit? It was through lots of visits to different groups. We also had, we adopted quite a participatory approach to our recruitment. So very early on, we established a group of people who had the direct experience of life with dementia to support us, to kind of design the study, to think through our methods, what was so important forward to be kind of local champions for the work. So, we asked these individuals, if we could go out with them, meet their friends and other people who they knew.

Professor Andrew Clark:

And we asked those individuals who were living with dementia to introduce us to other people, and also to introduce the research on our behalf. So, it was also a much more participatory approach to that recruitment. And the other thing to think about when it comes to recruitment, is perhaps try not to think about how many people you want, or how many people do you need? It’s actually, what data do you want? What information do you need? What evidence do you need in order to answer your research questions? And you might be able to get that information from three or four people, rather than 40 or 50.

Professor Andrew Clark:

It’s all about thinking about the material you want. But the other thing to remember is that when we recruit in QL or certainly in the projects I was involved with, it wasn’t about recruiting individuals, we were in a way recruiting for experience, we were recruiting to engage in interactions and that repeated interaction that kind of building up of a knowledge base, of an evidence base, if you like, it’s that collection of stories and a collective history of individuals over time.

Professor Andrew Clark:

The recruitment really takes second place to the interactions. So, the question, yes, how do you recruit is always vital. But actually, how do you continue to maintain relationships? How do you continue to interact with participants? Becomes just as important as that initial question.

Leah Fullegar:

I think you’ve sort of touched on the next question as well, is, how important is it to consistently repeat the information collection method?

Dr Kahryn Hughes:

In quality longitudinal research what you are able to build into your research methodology is the potential to ask a whole range of different questions. Say, for example, under the Timescapes study from the outset a study that I was involved in under the whole program of research with Nick Emmel, we were looking at midlife grandparents in low-income contexts. We were able to anticipate four rounds of data collection. That was something that we had planned in, in terms of our research design.

Dr Kahryn Hughes:

And we organized those four rounds thematically. So, from the very beginning, we wanted to understand about them as in their family context. And we wanted to understand about grandparenting, how they grandparented and perhaps how they themselves had been grandparent by others. And we wanted to understand about their future orientation, so their aspirations, their ambitions, and that was a second round of interviews.

Dr Kahryn Hughes:

We wanted to understand them in terms of their locality, for example, and experiences of low-income life. And that was another round of interviews. So that was our data collection was arranged and the questions that we asked weren’t the same. We were going back at what we were doing, building much more complex pictures about people’s lives, how they understood their lives, how they anticipated their lives would progress, their histories, their explanations of families, and so and so forth.

Dr Kahryn Hughes:

So, we were actually able to build in quite different sets of questions, even at the same time as we were also building in the possibility for some sorts of comparisons. So again, it’s this idea of continuity and change that building those opportunities in qualitative longitudinal research, I think, are much more powerful, much more possible to a QL design.

Leah Fullegar:

Andrew, some question specifically for you. The first one I imagine is a very loaded question. How do you cost a study like this?

Professor Andrew Clark:

The short answer, and the flippant question is really carefully.

Leah Fullegar:

With great difficulty

Professor Andrew Clark:

And with difficulty. So how do you cost it? First of all, I think if you are fortunate enough to have a good research development department or someone involved in your institution in financing bids, is so important to talk to them and get their expertise. I think in my experience, what you can’t do is just think, okay, well, I just need to cost for three rounds of interviews and that will do, so it’s kind of three times the cost of one interview.

Professor Andrew Clark:

I think it’s so important to cost in research a time, I think it’s so important to cost in time for preparation, it’s important to cost in time for analysis after each round. I think sometimes the rush to go about gathering in as much data as possible means that sometimes researchers’ kind of turn into data collection machines, it’s almost as our research project could become like a data production factory. And I was really conscious with our project that after we had finished our first round of data collection and it was in three countries and there were three methods, as soon as that was over the temptation to thinking now, we must get back into the field to start data collection all over again, because otherwise we’re going to run out of time.

Professor Andrew Clark:

Means that sometimes the temptation to forget about the analysis bit is high, and analysis is essential, and it is a resource. It takes the time and to think, it takes time to work through your material, in my view, you’re not going to get much richness in a repeat engagement, if you haven’t taken the time to work out what you think you’ve understood in your first round. So, it’s about costing that. I think it’s about costing, if you’re able to, just for the amount of time to prepare your data, to use a really awkward expression, to kind of clean your data set up.

Professor Andrew Clark:

What are you going to do about anonymizing your data set? How are you going to store it? Where are you going to store it? These are all things that take time to think through, but also kind of have cost elements as well. And the other thing I suppose to think about is to cost through how you’re going to maintain relationships with people so you can continue to reengage with them? So, this is not just about costing time, but we ran a range of events.

Professor Andrew Clark:

Now, when it came to costume, we called them dissemination events because we thought we’d have finished the research and we would just be telling people what we’d found out. And in practice, what we thought is that these weren’t dissemination events, these were ongoing events to kind of sense check some of the things we were finding. They were events for people who’d been our participants and their family and friends to come along and, in a way, celebrate the achievement of being a part of a research project that goes on documenting people’s lives, or also to ask new questions of what we’d found that we ran activities and produced outputs collectively.

Professor Andrew Clark:

So, we worked with people living with dementia, not just to give presentations, but to work on different sorts of outputs. So, we work with illustrators to produce comics and magazines and things, and all these things that you would traditionally cost as dissemination activity or impact generating activities were also opportunities to try to understand a bit more about the lives that we were trying to understand. So, I’m not sure how helpful that is in terms of what you cost other than to actually make sure you don’t just cost for how many interviews or whatever you think you’re going to be doing, it’s much more complex than that.

Leah Fullegar:

If someone is mining data or using an existing data set to perform this research, are there any particular considerations?

Professor Andrew Clark:

I think Kahryn is far better than me to answer this. I think what I can talk about is our experience of preparing material to be archived for future researchers. And I think the most important thing, and this comes up a lot in qualitative research is to be really mindful of the loss of context, by, as it were cleaning your data, anonymizing it, making sure that it conforms to all those quite appropriate ethical considerations.

Professor Andrew Clark:

Are you in a way kind of…? Are you ringing the life out of the data that you’ve collected? In my own work, where we understand where people live and their friends and their contacts by changing the name, not just the names of people, but if we change the names of organizations, of places, then what is then left for a future researcher to come along and look at? And it doesn’t just have to be future researchers, I think even us as a research team, when we were turning to our data we’d already collected, we realized you can’t rely on your own memory to work out what something meant.

Professor Andrew Clark:

So, it’s, again, really important to keep a clear record of how you’re preparing stuff for your own archiving, never mind somebody else’s. And the other thing I’ll say, when we think about this longitudinal work, particularly in a dementia context, is that we can’t rely on narrative as your kind of guiding principle. What I mean by that is I think we kind of assume that someone will tell a linear story, this happened, that happened and then in the future, something else will happen.

Professor Andrew Clark:

Certainly, with the people we talk to it, if communication is perhaps one of the symptoms of dementia, it can become difficult to get a linear narrative. And then when it comes to archiving the material you’ve got, unless your researchers have done a really thorough job of providing additional notes and explanation for some of the stories that you’ve together, then in the future, it can be really hard to piece together the chronology, the temporal logic to what’s being said. So, it’s also about making sure you’ve got really good notes.

Leah Fullegar:

How do you deal with attrition or prepare for that?

Dr Kahryn Hughes:

So, I think that this is such an interesting point in the discussion because this is the point at which that blurring between qualitative longitudinal and qualitative secondary analysis really comes, is all grounded. And I would say that qualitative secondary absolutely builds out of qualitative longitudinal research methods, that is its sort of bones, if you like methodological bones. In terms of anonymization, and Andrew said, is about how far might we strip meaning out of our data by changing names and removing contextual details.

Dr Kahryn Hughes:

There were some really straightforward strategies that people might find helpful. So always having very clear keys. So, if you are anonymizing people from the outset, having a very clear set of all the anonymized details being held alongside the anonymized sets and also having two copies of your data set. So, one which is anonymized and one which has been anonymized. The second thing just picking up on what Andrea has just said, is around the context of the research.

Dr Kahryn Hughes:

So often in qualitative research or in social sciences research, we talk about context as meaning that social context is somehow that exists separately from the actual research. But as everything that Andrea has said today indicates is that the research is about establishing a whole range of different sorts of relationships. It’s profoundly based on and reliant on particular sorts of relationships in the field and relate broader social relationships with funders, with stakeholders and so on, so forth.

Dr Kahryn Hughes:

But then these longer-term scholarly relationships in terms of the sorts of bodies of knowledge that we are engaging with and so on, so forth. So, for me, I think that what is really, really important to capture at the same time is the context of our participants, is the context of the research itself, because then what we’re able to do is to gain an understanding retrospectively of how and why we were thinking at a given moment in time.

Dr Kahryn Hughes:

We might think, oh yeah, well, we’re asking those questions from the outsets, but if we’re able to go back, we can see that we were asking them in completely different ways. Why? What has been the consequences about research engagement that has encouraged us, sort of pushed us in different sorts of academic directions so that we ask those questions, but in very different sorts of ways? So, for me, a big thing, I’ve mentioned it earlier, field work diary, get as many of those as you can.

Dr Kahryn Hughes:

And finally, I would just point to some resources, Niamh Moore has written about anonymization and the complexities of that. Also, Bren Neale has written about that amongst lots of other people, but those are the sort of standout texts. And again, on the Timescapes Archive website, Bren Neale has developed a big document which contains oodles of information about how to manage and prepare a data set whether or not for archiving, but when it’s QL, what you really need to bear in mind and all the sorts of complexities around that, how to gain consent in QL research, it’s different than, say, in a one-off research study.

Dr Kahryn Hughes:

How you might want to gain consent for archiving, for reuse and those sorts of things. And that’s important in QL where team members may change over time, where funders might change over time. And people, say, 10 years down the line are going back to an original data set and they’re completely different researchers, but there were some forms of continuity in that research endeavour in that research team. So that’s on the Timescapes Archive website for download.

Leah Fullegar:

Back to you, Andrew, how do you deal with attrition or prepare for that?

Professor Andrew Clark:

So, I think you prepare for it by anticipating it, by expecting it. Particularly in dementia, I think, you have to anticipate that not everybody will be able to take part in your research all the way through for lots of reasons. We had participant who perhaps became unwell, who became more poorly, who some of their symptoms of dementia meant that when we reengaged with them or wanted to revisit them, it wasn’t possible for them to take part.

Professor Andrew Clark:

I think you also have to prepare, certainly if you’re working with people are perhaps older, that some participants had died for example, and you have to prepare for these sorts of things, this is the stuff of life. So, when it comes to, how do you deal with attrition? I think one of the things I would say, and I’ve answered this slightly differently to what you might have expected, is to prepare yourself for the changes that you will experience as a researcher and prepare yourself to experience changing participants.

Professor Andrew Clark:

And these might be changes that participant themselves are not able to recognize fully, but which those people around them will recognize. So, there’s emotion work involved when we start to think about what attrition is. More practically, of course, the advice is, well, you could recruit more people at the start than you want at the end. That’s such a mechanistic idea, but there is a practical use to that kind of thing.

Professor Andrew Clark:

The other thing to think about is, what constitutes data for you? Is it actually the number of people that you want to stick with, or actually, is it more about the richness and the depth of understanding that you want? And so actually, is it possible if some people could no longer take part or actually in our case, we had to take the decision on behalf of other people that however much we would’ve liked them to have continued to participate in the research, we felt that they perhaps were just not able to do so.

Professor Andrew Clark:

We had to take the decision on other people’s behalf, not to involve them as the work goes forward. It’s about thinking through, well, what can we do with the material we’ve already got? Repeated and reengagement with people gives you such a rich amount of material that even if not all our participants were with us through each round of data collection, we could still understand something of the longitudinal quality of their life.

Professor Andrew Clark:

And I think the other thing to think about is that there’s been lots of talk of relationships and relationships change and relationships also, we found changed with friends, family members, supporters, with people we might label as a gatekeeper, will also change over time. So, the importance of that relationship building, and maintenance work is also to enable in a way ongoing engagement for people. And I think also it’s about dealing with attrition in terms of making sure your methods are flexible enough to be altered.

Professor Andrew Clark:

I think one of the real advantages of qualitative work, regardless of whether it’s longitudinal or not, is that you can actually change it according to the circumstances you find yourself in. And certainly, when you’re working with people living with dementia over a period of time, being able to adapt something very quickly in the moment in response to what people are telling you that they could do or can’t do is a really important way of dealing with this peculiar word attrition.

Professor Andrew Clark:

And then the last thing I would say is, in terms of dealing with attrition, is remember that attrition is itself a kind of information about life, understanding why people can’t continue or take part in your research in the way you’d initially planned, is just as important as people being able to continue to be involved, repeating your methods over time. Attrition is just a scientific term for life and stuff that happens that means future plans can’t be followed through.

Leah Fullegar:

Really useful information and something I will consider in the future if I can get my brain to be mathematical enough to cost it all. So, what have we learned so far? We’ve learned about the importance of continuity, about the importance of relationships, temporality, the passage of time and the things that change. And more importantly, we’ve learned in that costing is really, really difficult. So, in this final part of the show, we’re going to discuss the common pitfalls, challenges and how to avoid them.

Leah Fullegar:

I get the feeling; this method can be extremely challenging. You clearly need to think ahead, get the design of the study right. And while we haven’t discussed this much today, well, I have cost is definitely a factor. Andrew, can you tell us what challenges you came across in delivering your research and what might you do differently?

Professor Andrew Clark:

So, all research has got challenges and I don’t want people to listen and think, oh, QL is too hard, it’s too challenging, I don’t think I’ll bother, I think I’ll do cross-sectional instead, it seems more straightforward. So, I don’t want it to be a long list of challenges. I suppose I’m thinking in a dementia context, then you need to really think about relationships, not just with your participant, but all those other individuals around them. I think you also need to think about what it means to reengage with an individual.

Professor Andrew Clark:

Reengagement is not just about returning with the same questions you want to ask, or kind of talked about the complexity of that. But actually, we found as we returned to people, we were oftentimes returning to people who were in very different circumstances. And it’s about being mindful of that and being really open to what you might return to. Yes, there might be clues in your existing dataset about the kinds of futures that you are returning to people in, but actually you can never really know for sure.

Professor Andrew Clark:

So also, it’s about being really flexible and open to making changes. It’s about ensuring that people can participate in research in ways that’s meaningful and authentic to them, but also that will provide you with sufficient information to help you to continue to understand the life that they’re in and that can sometimes be making really difficult decisions about how you involve people going forward. And I also think that there are some challenges in terms of thinking about the time to analyze all your material throughout the course of the project.

Professor Andrew Clark:

You can’t just gather all your data and then hopefully spend the last 12 months analyzing everything and writing it up, and there’s your answer. It, I really learn quickly that that’s never going to work. I think sometimes you forget in the thrill and the rush and the busyness of gathering your data, but actually there is an analytical question here. There are longitudinal questions, there are questions about time you’re trying to answer, but also don’t forget that there are also cross-sectional questions that you also will be perhaps pursuing within each round of data collection.

Professor Andrew Clark:

But overall, when you look back on a QL project, you need to be able to say something about time, whatever that is, not just say, “I visited several people at different points, and this is what was happening at those key points.” And I think the other challenge that we’ve certainly faced, and I don’t have any solution to this, is to be really careful fault of what I want term causality, understanding causality.

Professor Andrew Clark:

So, it was so tempting for us think, oh, there are these changes in people’s lives. These people are experiencing their neighborhoods differently because of dementia and changes that have happened with their diagnosis, when in reality, those changes are a result of all sorts of other things that are going on in the mix, but you can only really understand all that other stuff that’s going on if you’ve designed your study and if you’ve got enough confidence in your methods to be able to look beyond dementia as a condition, to try to understand the whole massive business of life that takes place around it. So, the last challenge is about how do you attribute explanation to the changes that you’ve witnessed and the continuity as well?

Leah Fullegar:

That’s brilliant. That’s really useful. It’s interesting to think that, well, in any life, in life in general, there’s so much going on and that it’s not always put school to capture every aspect of it. And I think presuming that you would be overconfident perhaps. And Kahryn, do you have any other common pitfalls and how to avoid them?

Dr Kahryn Hughes:

Well, I’d come in here actually. And I think that often social sciences research is trying to engage with the intersection between history and biopathy, and for me, I think that one off interview is far more challenging to answer those sorts of questions than qualitative longitudinal research methods. So, for me, I think that in actual fact, rather than constraining people or providing them with lots and lots of challenges, I think that QL methods are quite liberating because what they do allow us to do is to find something out from people, we’ve not spoken to them before.

Dr Kahryn Hughes:

We might have looked at lots of other research, but we’ve spoken to these particular people, they’ve told us stuff that was quite unexpected. We didn’t know that before, it’s new. And so, what we’re then able to do in qualitative longitudinal research is to sit down and think, well, why might this be unexpected? What is it that we didn’t know before that they’re now telling us? What is it about their lives that we didn’t particularly anticipate? This is new. And why are they thinking in those particular ways?

Dr Kahryn Hughes:

And so, of course, QL allows us to go back and then ask those questions, and we ask people to provide those explanations for us in qualitative research effectively, what we do is we ask people to provide theory for us to theorize about their lives. These are what these narratives are. My life is working out, it worked, it did this, this happened because of these sorts of situations. I think that our participants provide sociological explanation in particular ways. That sociology isn’t something that’s solely a discipline that’s contained by sociologists.

Dr Kahryn Hughes:

This is, it’s a social dialogue and narrative and social historical discipline and people in their everyday lives utilize sociological explanation in order to account of the ways in which their lives have unfolded. So qualitative longitudinal methods allow us to track those changes in people’s explanations and map them onto particular circle developments and processes and facilitate. I think, I would like to argue for richer, very complex forms of theoretical engagement.

Leah Fullegar:

One question to both of you, I think our listeners will now have a pretty good understanding of this methodological approach, but if you could give a one sentence piece of advice to anyone considering QL as a method, what would that be? I’ll put you on the spot first, Andrew.

Professor Andrew Clark:

First of all, don’t think that you need a very long period of time to QL work, and QL can be done other period of days, not necessarily years. But actually, my second piece of advice is to talk to other people, other researchers, other PhD students, other academics about what it is like to actually do QL, in addition to reading all the excellent resources that are available.

Leah Fullegar:

Kahryn.

Dr Kahryn Hughes:

I think Andrew’s covered all the bases. I mean, mine, my quick one sentence, would have been, go and read, have a look at what other people have done. Choosing would be based on what really excited you in the existing literature. What are the questions that are absolutely burning for you when you read somebody else’s work and you thought, oh my gosh, that’s amazing? Think about why that is. What sorts of possibilities and opportunities did that work offer that you yourself would like to utilize in your main research?

Leah Fullegar:

I think that’s a fantastic piece of advice there, Kahryn, and actually I’ll do a very quick shout out to one of my undergraduate teachers, Dawn Goodall, who gave me the advice when I was choosing a subject. He said, “Pick something that really annoys you because you’ll never let it go.” I thought that was a very good piece of advice. So, this has been really helpful. I mean, dementia and longitudinal qualitative research is so important, particularly when combined with health information, as we get a window into understanding the disease, how it progresses, how it affects people in their lives and how those changes over time.

Leah Fullegar:

From that you can ensure you put the right support into place, and you can prepare, and the data can help inform drug trials and all sorts of other work. So right time for our final segment, I’m going to give our expert, Kahryn, one minute to tell our listeners what they should go away and read to further their knowledge on this method. Kahryn, over to you. I’m starting the clock now.

Dr Kahryn Hughes:

Well, obviously start with Bren Neale. She’s written a couple of brilliant books over the last couple of years, The Craft of Qualitative Longitudinal Research, and also, what is Qualitative Longitudinal Research? If you want to start with this book, it’s very short, it’d be fantastic. The other work that I think I would direct you towards is work by Johnny Saldana, I’m not sure if I’m pronouncing his name correctly, but he wrote a very seminal piece.

Dr Kahryn Hughes:

Work by Janet Holland, Rachel Thompson, and Sheila Henderson, they wrote a lot of very ground-breaking papers and reports on QL. And I would also direct you towards online resource, it’s called big QLR. It was Rose Edwards, Lynn Jameson, Susie Weller, and Emma Davidson. It was part of the NCRM funded work in developing a big qualitative method, but it contains within it blogs by people from all over the world around using qualitative longitudinal research methodology.

Dr Kahryn Hughes:

And obviously, I’m going to give a plug again for the Timescapes Archive website, because seriously, all these people produce papers and reports for they’re all part of Timescapes, they produce reports for that. So, a wealth of resources, please just go and have a look.

Leah Fullegar:

Fantastic. Thank you so much. I’m afraid that’s all we have time for today. So let me say a huge thank you to our wonderful guests who are both very much sharing the single chair in the expert corner. From the University of Leeds, we have the awesome doctor, Kahryn Hughes, and from the University of Salford, the breath-taking Professor Andrew Clark. So, thank you so much for coming. Join me again tomorrow as we bounce our way headlong into a method that I know extremely little about, multi-level modelling. That makes me think of LEGO, and it’s not a technique you use on Minecraft. Thank you all very much for listening.

END