Methods Matter Podcast – Oral Histories & Story Telling

Dr Donncha Mullin:

Hello. Welcome to The Methods Matter Podcast, from Dementia Researcher and the National Center for Research Methods, the show that tries to make sense of research methods, to help me and you understand them.

Dr Donncha Mullin:

In this series, we will be looking at five different research methods, with a resident method expert and a dementia researcher that has put the method into practice.

Dr Donncha Mullin:

Today, it’s all about oral histories and storytelling. But before we get to that, let me introduce myself. I’m Dr. Donncha Mullin, a psychiatrist and PhD clinical fellow at the University of Edinburgh.

Dr Donncha Mullin:

Before doing medicine, I qualified as a physiotherapist. Now I combine the physical and mental aspects of aging by researching a walking speed-based pre-dementia syndrome, called Motoric Cognitive Risk.

Dr Donncha Mullin:

To put it simply, it’s a syndrome combining slow walking speed and self-reported memory or thinking problems, in older people without dementia.

Dr Donncha Mullin:

I took on the mission of hosting this second season because I’m not a qualitative researcher, but I’d like to work out which of these methods I could use to improve my work.

Dr Donncha Mullin:

Undeterred by her experience in the first season, I’m delighted to welcome our now resident expert on all things research methods, Dr. Kahryn Hughes, from the University of Leeds.

Dr Donncha Mullin:

Kahryn is 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 National Center for Research Methods. Hello, Kahryn. How are you?

Dr Kahryn Hughes:

I’m really good. Thanks so much, Donncha. How’s it going?

Dr Donncha Mullin:

It’s going well. I have a little bit of a dry mouth, but it’s going well. Kahryn, when the last season was recorded, you’d just taken up scuba diving. Have you managed to get in the water lately?

Dr Kahryn Hughes:

I haven’t done anymore scuba diving. It’s just really scary. I’d have to do myself up for it again. But I have started wild water swimming, which basically means going into the sea when it’s really cold, during the winter, in your swimming costume and splashing about a bit.

Dr Donncha Mullin:

Wonderful. Are there any places close by to where you work or where you stay?

Dr Kahryn Hughes:

Yeah. I’m on the coast in North Wales, so I’ve got the whole of the North Wales coastline. It’s absolutely gorgeous.

Dr Donncha Mullin:

Sounds amazing. Moving on, our jobbing researcher for today is Dr. Katya Sion, post-doctoral researcher and linking pin from Maastritch University in the Netherlands.

Dr Donncha Mullin:

Katya’s research looks at the quality of residential elderly care from the resident’s perspective.

Dr Donncha Mullin:

She describes herself as incredibly impatient and curious, two attributes which she has found to be useful skills within academia. Hello, Katya. Welcome to the show.

Dr Katya Sion:

Hi, thank you so much for having me today.

Dr Donncha Mullin:

We’re delighted to have you here. Katya, so before we start, I must ask. Your job title said you’re a linking pin. I need to know more about this.

Dr Donncha Mullin:

Also, I spotted you’re a new mom, which I can relate to as a new dad. So, maybe we can talk about sleepless nights and compare notes on how to cope.

Dr Katya Sion:

Well, to first zoom into your last question, I think if I get into motherhood, we may be talking about that the whole podcast. So, I won’t be doing that today.

Dr Katya Sion:

Then, to actually get back to the linking pin, I’m actually very proud of this position because where I work at the university, in our department, we’ve established a living lab in aging and longterm care, one of the first, I think worldwide even.

Dr Katya Sion:

It’s actually a collaboration between four universities, applied universities, vocational institutes and nine longterm care organizations, in which we collaborate and work together, to combine practice and research more closely.

Dr Katya Sion:

As a linking pin, I’m actually appointed one day a week, to one of these longterm care organizations, to really get to know the lay of the land, to see if there’s links, to make sure that the research that we’re performing also actually suits what practice is in need of, instead of just doing desk research. Yeah. It really makes the job a lot of fun.

Dr Donncha Mullin:

That sounds fascinating. Do you imagine, once COVID restrictions lift further, that you’ll be traveling a lot between the different institutions?

Dr Katya Sion:

Yeah. The idea is that I really get to know, first the organization that I am appointed to, that I get to know that very well. And then also, of course, that I learn from the other organizations, so we can also really disseminate our knowledge. To a certain extent, we are doing that. We also did that during COVID time.

Dr Donncha Mullin:

I’m sure. I bet. Okay, so down to business. What do I know? We begin each podcast with me giving a summary of what I understand to be the method we’re exploring, which of course today, is oral histories and storytelling.

Dr Donncha Mullin:

When I first considered what oral histories and storytelling methods were about, I thought, this is going to be easy, because what it means is right there in the title. But I suspect I’m going to get caught out by this.

Dr Donncha Mullin:

Let’s start by saying, once upon a time, like every good story should. Here goes. My best guess at what this method involves, is listening and capturing people’s stories, thinking about their life, childhood memories, with a focus on preserving the story, maybe through audio or video recording. Maybe more with a view that, this will be helpful to researchers and future generations.

Dr Donncha Mullin:

For example, I can imagine in 10, 20, a hundred years time, how interesting a recording from the last two years of people’s experience of going through the COVID pandemic would be. Kahryn, put the record straight and introduce the method for us.

Dr Kahryn Hughes:

Okay. These methods, they emerge at a time when in social science, we’re becoming more interested, not only in describing these large scale social processes and social change, but we are also interested in how we might be able to observe these changes through what people are doing and thinking.

Dr Kahryn Hughes:

To research that, we begin to develop biographical methods. So, there’s a couple of turns, if you like, that have been described as happening.

Dr Kahryn Hughes:

One is the biographical turn in social sciences research, where researchers turn to look at biography rather than at larger scale processes.

Dr Kahryn Hughes:

Then also a narrative turn, because obviously what we’re asking people to do is, tell me about your lives. Therefore, we’re trying to elicit these longer-term narratives or narratives that cover a longer period in people’s lives, which brings in a host of new methodological questions that I need to be addressing.

Dr Kahryn Hughes:

Now, we’ve got oral history method and storytelling methods in the one podcast, but actually, they’re two different methodologies. So, I’m going to deal with each, but then I’m going to clarify the links between them.

Dr Kahryn Hughes:

Oral history methods, it’s a way of asking questions as a means of recording an oral testimony, like a living testimony. By that, I mean, people describing periods in their lives or describing their whole lives, both in terms of an individual, obviously from their own perspectives, but the oral history itself becomes a process of encouraging someone to describe a period of history. So they’re about individual and collective histories.

Dr Kahryn Hughes:

What’s really lovely about oral histories is that they are sort of products. So they’re not only just ways of engaging, but what you produce is an oral history and maybe an archival or cache or collection of oral histories, oral testimonies, so that they can stand as a matter of history for other people into the future. I think interestingly, I’m going to be keen to get Katya’s take a little bit later.

Dr Kahryn Hughes:

For our discussion, oral history means relying on people’s memories and recollection. So the other thing, obviously for me, I’m really keen on methods of qualitative secondary analysis.

Dr Kahryn Hughes:

Oral histories are meant to be reused. So, they become historical artifacts that can be examined in the future.

Dr Kahryn Hughes:

That’s different to interviews, that are usually considered to be only to be used by the originating research team. But obviously in qualitative secondary analysis, there’s a big push. No, no, don’t just think in those ways.

Dr Kahryn Hughes:

Storytelling is slightly different. A lot of human history is told through story and in actual fact, has been stored through stories, through narratives.

Dr Kahryn Hughes:

We know cross-culturally, that there continue to be really strong storytelling traditions, that combine communities and nations, that tell and preserve their histories and heritage. That’s storytelling.

Dr Kahryn Hughes:

Storytelling techniques can be similar to oral histories. They’re narratives that have been built up using bits of people’s life, through skillful questioning.

Dr Kahryn Hughes:

Normally, in storytelling in research, what we’re asking is people to focus on a particular event. So for example, with newly married couples you say, “Oh, tell me the story of how you met.” So, that very focused tale of a particular set of events or whatever.

Dr Kahryn Hughes:

The commonalities, oral histories are a form of story, inevitably. They’ve been elicited from the participant, in order to produce this narrative thread, a connective narrative that pulls together the bits of their lives, as they’re lived over time.

Dr Kahryn Hughes:

There’re usually a theme to those histories. They connect to methods like life histories. So, life history interviews use those similar sorts of techniques, and that storytelling can be used to explore particular points along someone’s life history, or can be used to combine events in ways that produce new oral histories.

Dr Donncha Mullin:

Fascinating, Kahryn. Thank you so much for that amazing and informative, yet succinct intro. I had one quick question. There may not be an easy answer. Is there a rule of thumb, say on when an oral history interview you’ve recorded, when that becomes historical enough to actually use in your research?

Dr Donncha Mullin:

As a PhD student, can you interview people and then use that as oral history? Does there need to be a certain amount of time between the data connection-

Dr Kahryn Hughes:

It’s an oral history, straight off the bat. I think the challenge for the researcher is to engage precisely with that question of time. We might describe it as temporal remove. So, how close am I, how imminent am I in the moment of that history’s production, or how remote am I from that?

Dr Kahryn Hughes:

What is the challenge there? What do I lose from not being part of that same history? But then, what might I gain from having that historical distance and the ability to build in historical comparison, from one time to another, if you like?

Dr Donncha Mullin:

Okay. Okay. I like that a lot. Why Kahryn, would someone choose this method?

Dr Kahryn Hughes:

Which one, storytelling or oral history?

Dr Donncha Mullin:

Say storytelling, first of all.

Dr Kahryn Hughes:

Yeah. We might use storytelling in order to get a real sense of how somebody made sense of a particular aspect of their life and what the relevance of that now is, when we’re speaking to them.

Dr Kahryn Hughes:

I’m going to come to dementia. Just to say, I’m not a dementia researcher, so this is purely speculative. I’m so keen to hear Katya’s take on what I’m going to say.

Dr Kahryn Hughes:

If we’re thinking, are people experiencing dementia as a form of illness? How are they understanding their experiences of dementia? How do they understand past and future, in the context of a dementia diagnosis or progressive dementia over time?

Dr Kahryn Hughes:

So, eliciting a story allows us into that process of sense making and how people, particularly where there were illness narratives, how they may build up ideas of good and bad times. Because often they say, well, that was a phase and then this was a phase and then that’s a phase.

Dr Kahryn Hughes:

So then, what you’re also then able to build in analytically, are points of comparison within the narrative itself. Why might they say that was good? Why was that bad? What is it that is problematic here? What is good there?

Dr Kahryn Hughes:

That obviously helps us to then begin to think through what services we might want to provide or where service intervention is most necessary.

Dr Kahryn Hughes:

Often, when people are most vulnerable and most in need of support, they’re least capable of accessing help. So, stories might be able to show us those sorts of disjunctions between need and provision.

Dr Donncha Mullin:

Brilliant, Kahryn. Thank you so much for that coverage of storytelling. Now, you said at the outset, that there are two separate topics, even though we’re covering them in the one topic.

Dr Donncha Mullin:

What are the main differences for you? Why might someone use oral histories rather than storytelling?

Dr Kahryn Hughes:

Oral histories give us a much more comprehensive narrative of people, the longer duration of people’s lives and also give us a sense of the times through which they’ve lived.

Dr Kahryn Hughes:

As I said earlier, they’re both a form of engagement, but they’re also a product of research. We seek to preserve them and reuse them.

Dr Kahryn Hughes:

Oral histories with people with dementia, might actually be used in order to serve the interests of the participants. That people may feel their memory’s going, and what they would really like to do is to provide a human testimony to the world that they have lived in and been part of and helped produce.

Dr Kahryn Hughes:

So an oral history, in that respect, in the context of dementia research, might be something that researchers can provide, both for the participant and for their families.

Dr Donncha Mullin:

Brilliant. Before we move on to Katya, I had one other question around quest narrative. I read a little bit about linear and non-linear storytelling. Some of my favorite movies have a non-linear storytelling approach, but what is a quest narrative?

Dr Kahryn Hughes:

I had to Google this. I’d not come across quest narratives myself, before. Being a real Tolkien lover, I know what a quest is, but what the dickens is a quest narrative?

Dr Kahryn Hughes:

These are narratives where you encourage somebody to think about a particularly… maybe a challenging aspect of their life or a goal that they would like to achieve.

Dr Kahryn Hughes:

What you do is, encourage them to describe why this goal is important, what it is that they would want to do. Why do they want to do it? Then you can encourage them to talk about…

Dr Kahryn Hughes:

For me, I think that you’ve got some options here, of engaging alongside people as they go through something, say engaging longitudinally or engaging prospectively, where you can ask somebody, “Well, how would you get to that goal? What is it that you might need to do? What might be the difficulties of achieving that?”

Dr Kahryn Hughes:

Then, maybe either connecting with them throughout the research or connecting retrospectively and saying, “Well, what actually happened? What were the challenges? What were the differences in expectation?”

Dr Kahryn Hughes:

Quest narratives, so this was some of the papers that I’ve been reading, are particularly useful in illness. Again, Katya, if you’ve got some views on this, that would be great.

Dr Kahryn Hughes:

But quest narratives, they put that person at the center of the quest. So, if somebody is experiencing a health-related difficulty, the narrative encourages them to focus specifically on their needs and on their abilities, in the context of these challenges.

Dr Kahryn Hughes:

So, helps that person and other people to identify again, which people might help along the way? What might they need to support that quest? How might we get people to achieve those goals?

Dr Kahryn Hughes:

I also know that, for example, in stroke research, that people who have had a stroke and experience physical impairments as a consequence of stroke, that sometimes their goal is unreasonable. They’re not going to attain that.

Dr Kahryn Hughes:

So, quest narrative might be really useful to support a longer-term negotiation between healthcare providers and patients, in order to establish more expectations, both for them and their families, around what can and can’t be achieved.

Dr Donncha Mullin:

Okay, brilliant. When you mentioned Tolkien, I kept bringing myself back to Frodo, with his ring, getting together as fellowship, who can help him, who can’t, query [inaudible 00:18:55].

Dr Kahryn Hughes:

Yeah, exactly.

Dr Donncha Mullin:

Thank you for bringing it to my level.

Dr Kahryn Hughes:

Absolutely. Yeah. Who are these magical people? Who are the key movers and shakers in helping this person? But the point about that is, it’s about that person’s needs. It’s not about the needs of anybody else.

Dr Kahryn Hughes:

It’s that very person-centered approach, which obviously maps onto patient-centered care, narratives and agendas for patient-centered care, where we understand people’s health journeys or illness journeys, those pathways through different healthcare settings. So, quest narrative helps us to see that as well.

Dr Donncha Mullin:

Brilliant. When I saw quest narrative, I thought, how is that going to be different to an interview? But I think you’ve explained it so clearly there, that you can really see the differences.

Dr Donncha Mullin:

Katya, could I bring you into the conversation? Now, I know you use narrative inquiry and perspective triangulation. Are there any differences to what Kahryn described?

Dr Katya Sion:

Yeah. Thanks so much for letting me weigh into this conversation, because I’ve also already learned some new things. For me, I wasn’t aware that there were so many different definitions of different types of narratives. So, I hope I’m not going to disappoint Kahryn.

Dr Donncha Mullin:

I’m sure you won’t.

Dr Katya Sion:

I’ll start with some of the similarities that I’ve heard. Especially at the end, I really heard some points, I was like, ah, this is exactly how we approach our narratives as well.

Dr Katya Sion:

That’s mainly, it’s not about what the interviewer wants to hear. It’s about what the person being interviewed wants to tell, wants to share.

Dr Katya Sion:

You, as an interviewer, you can even argue… Should you use that word? To keep it clear for our listeners, I will use that word. As an interviewer, you are there to facilitate someone else to tell their story.

Dr Katya Sion:

You will set a framework, in order to make sure that someone doesn’t drift off completely. Because we all know, if you start one story, half an hour later, you may be talk talking about something completely different. So, that is where the interviewer comes in, but it’s really about the respondent, the storyteller’s story.

Dr Katya Sion:

If we then also talk about person-centered care, I think this is what person-centered care is about. It’s about the person receiving care.

Dr Katya Sion:

Yet, then when we come to dementia, I do think it becomes a bit more complicated because as we know, people with severe dementia, they can have trouble to express themselves verbally. Yet, that doesn’t mean their stories are less relevant.

Dr Katya Sion:

That’s why we also use this prospective triangulation approach. We often talk about relationship-centered care instead of person-centered care, in which we actually say, it’s not a one-way street.

Dr Katya Sion:

It’s not about the care only for the person who is ill, but there’s a whole network of involved stakeholders. They all have their own needs, expectations and also experiences.

Dr Katya Sion:

Henceforth, if you really want to get into depth of a story, you need multiple perspectives to shine the light on a story, and then you have a much more complete overview.

Dr Katya Sion:

So, I think that’s maybe an addition to what has already been said and maybe a difference to how we approach our narratives.

Dr Donncha Mullin:

Sure. Katya, is it okay with you if I start using the term relationship-centered care in my clinical practice?

Dr Katya Sion:

Yeah. I am in big favor of it. I believe this is what quality of care is about. There’s more people involved, so it’s also not fair towards the care professional or the family members, to weigh them out of the equation.

Dr Katya Sion:

You can’t only give. You’re also part of it, so your needs and expectations should also be considered.

Dr Donncha Mullin:

Absolutely. For so long, I felt some discomfort with talking about patient-centered care when the only person I really knew, because I took on the care of someone with fairly advanced dementia, was the carer.

Dr Donncha Mullin:

It felt like I was sort of ignoring their needs, just with the terminology I was using and is used in the multidisciplinary team and in all the paperwork and in all the patient information leaflets. So, I really like that, Katya. Thank you so much for bringing that in.

Dr Donncha Mullin:

Now, could you tell us a little bit more about your research, Katya? What other methods do you use, for example?

Dr Katya Sion:

Yeah. Maybe it’s good to just paint a scope a little bit. My research, actually in my PhD, I developed a narrative method to assess the quality, specifically of nursing home care. That’s for people with dementia, also without, but we’ll focus on people with dementia now, who are actually living in a nursing home and how you could assess quality of care from their perspective, because they used to use questionnaires for that.

Dr Katya Sion:

We all know if someone says, “Well, the meals here, I give them a seven,” you still have no clue. What does that mean? How do I make it an eight? The average of the word was a seven, but does that mean one person gave a one and all of the others gave an eight? You don’t really know that much yet.

Dr Katya Sion:

So, that was my task. Try and figure out a way how we can do this and actually get useful information, so we can also improve quality for individuals, so we actually also know what we need to improve.

Dr Donncha Mullin:

What parts of that methodical approach suit your research question, more than the questionnaire? I can see the problems with the questionnaire. Have those problems been overcome using your approach?

Dr Katya Sion:

Those problems have been overcome, and we’ve created new problems for ourselves. We developed a method, it’s called connecting conversations. That’s actually based on this care triad that I was just talking about.

Dr Katya Sion:

You have the resident, the family member and an involved caregiver of the resident. Their three perspectives, they’re central. We’ve actually developed a whole theoretical framework around this triad, saying that you have experiences beforehand and certain needs. Then you have the actual experience within your care triad, which is really formed, not only by what is done, but also how it has been done, who has been involved.

Dr Katya Sion:

Then afterwards, you have an assessment of this in which you look, what happened? How did it happen? Did it impact your health status in any way? Also, how did it make you feel?

Dr Katya Sion:

Often, we tend to go straight towards satisfaction. Just, are you satisfied, yes or no? But from our framework, we actually have highlighted, there’s many more components before being able to say if you’re satisfied or not.

Dr Donncha Mullin:

Amazing. It seems, you’ve discovered more than seven out of 10. You’ve discovered what happened, how and really importantly, the impact on how it makes each of these people of the triad feel. Fantastic.

Dr Donncha Mullin:

When you were talking to each person, each member of the care triad, did you find that their perspectives differed?

Dr Katya Sion:

I must say, we really did, actually. We’re really happy about that. Because otherwise, you could argue if all three are going to tell the same, then don’t spend the time on it because it is time consuming, of course. That’s also one of the challenges we have.

Dr Katya Sion:

But what we really see is that, quite often, a resident will express something and a caregiver will maybe say the exact opposite, whereas both think the other one knows. So, it makes very explicit that, maybe there’s not enough time also, for these short conversations to express your needs.

Dr Katya Sion:

Residents also often feel, they don’t want to whine. They don’t want to complain. So, they’ll keep it to themselves. Maybe a small example will help.

Dr Katya Sion:

There was a resident that said, “I’m so frustrated. They always keep me in bed till… I’m one of the last ones that gets taken out of bed in the morning. I’m in so much pain. I want to get.”

Dr Katya Sion:

Whereas the caregiver told us, “We’re so happy to share with you that people can get up whenever they want here. For this resident, we let him sleep in.”

Dr Katya Sion:

Well, there’s a true mismatch, whereas you think you’re providing proper quality of care. You would never detect this with a questionnaire.

Dr Donncha Mullin:

No. Well, have you had a therapeutic conversation? Were all parties in the conversation at one time, or did you talk to each, individually?

Dr Katya Sion:

We talked to them individually. To make it even more complex, it’s not a researcher that performs the conversations, but we actually train care staff. So, the interviewers are actually independent, even though they are aware of the nursing home setting.

Dr Katya Sion:

That’s very valuable, because they also get a chance to have a peek somewhere else and also learn from these stories of residents and family members and other staff members, who they otherwise would’ve never met.

Dr Donncha Mullin:

Does each member of the triad find out the other person’s perspective and in that way, get a better understanding?

Dr Katya Sion:

Yeah. As it’s research, in our informed consent, we ask them if it’s okay to share the information, not anonymously, because usually you would do everything anonymously, of course.

Dr Katya Sion:

I think at least 75%, nowadays, probably even more, are okay with that. Then we can share it with the care team and also within the care triad, but you do want to keep that safe environment.

Dr Donncha Mullin:

Sure. Sure. That’s fantastic. So not only are you improving communication and clarifying what could be a lot of misunderstandings, but you’re also training nursing staff to have those really helpful conversations. I love it.

Dr Donncha Mullin:

Now that we have a description of what the method is and an example of how it has been used, let’s get into the detail and provide some top tips for anyone who is new to using the method.

Dr Donncha Mullin:

In this segment, I’m going to ask some quick, straightforward questions to both guests, on how to put method into practice.

Dr Donncha Mullin:

Kahryn, the first ones are for you. Question one, how should someone prepare?

Dr Kahryn Hughes:

I’m going to come back to what Katya said, is that I think it’s better to ask, how can we enable somebody else to tell their story?

Dr Kahryn Hughes:

Researchers will always be themetizing a story. They will be structuring it in some way. So, one of the decisions that you have to make in preparing for this research, is decide on how specific you want to get or how broad.

Dr Kahryn Hughes:

Both of those approaches have their own distinctive challenges. When it’s very specific, it can be quite constraining in shaping the stories that people give you.

Dr Kahryn Hughes:

Then on the other hand, being very wide, it might be unstructured and sometimes less of a story, more of a stream of consciousness. So, there’s those sorts of judgments.

Dr Donncha Mullin:

Brilliant. Question two, can anyone participate, or do you need to be selective in choosing people? For example, are shy people harder to work with, say?

Dr Kahryn Hughes:

Yeah. I think stories are great because we all storify our everyday lives, anyway. We are narrative beings. I mean, this is one of the really interesting things, because people keep treating methods as tools, as if they’re like a Lego kit.

Dr Kahryn Hughes:

We’ve created the pieces, and then we’ve put it together. Somehow, it sits outside of us as people and as human beings. When in actual fact, research methods are very reflective, particularly qualitative ones, are very reflective of who we are as people.

Dr Kahryn Hughes:

For example, you’ll get up in the morning. You’ll say to someone, “I had a really bad night’s sleep. I had a bad night’s sleep because of such and such.”

Dr Kahryn Hughes:

You might tell them the story of your night’s sleep, or it might be a bigger one. You tell them the story of your education or of your relationship or of your illness or whatever, but we constantly, constantly tell each other stories.

Dr Kahryn Hughes:

We know that stories need a beginning, a middle and an end. We know that they provide descriptions and explanations.

Dr Kahryn Hughes:

I think one of the things that, it’s useful to keep in mind as a researcher, is to understand the narratives that people produce in research as processes of theorizing. That actually, that our participants are developing explanations for us and are drawing on a whole range of different disciplinary knowledge.

Dr Kahryn Hughes:

I may say, well, I had a bad night of sleep because I had too much coffee. But that, just simple statement that we all say to each other, is predicated on this idea that I understand the impacts of caffeine on my system and that I understand the relationship between substances and sleep quality and brain activity and so on, so forth.

Dr Kahryn Hughes:

I’m drawing on quite specific disciplinary knowledge, in formulating that story about my night’s sleep.

Dr Kahryn Hughes:

So, I think whether people are shy or not, it’s less about that. It’s about how we… again, coming back to this point before, how we’re going to be able to support people in providing the stories that they want to tell.

Dr Kahryn Hughes:

It doesn’t really require speaking, sometimes. For some people, they might not be able to speak. So, we might be using physical materials, plasticine even. Something like that, we could use or Lego.

Dr Kahryn Hughes:

You could use Lego to build a story or build stages or life history maps or all sorts of things. But things like poem, songs, films, these are all forms of storifying, that we can encourage people to do.

Dr Kahryn Hughes:

These sorts of approaches are a great way to see how people understand the conventions of storytelling and what they will put forward as moments of drama.

Dr Kahryn Hughes:

I’m now shifting us towards analysis here, rather than the bit about, how do we get people to participate? That’s something that’s good to bear in mind.

Dr Kahryn Hughes:

Sorry, Donncha. I just did want to say, what doesn’t seem to be happening is research that collects the stories people have already written or recorded.

Dr Kahryn Hughes:

People constantly write short stories, novels, autobiographies. There’re all lots of informal autobiographical materials in most people’s houses. They’ve recorded something about their lives already. So, I think that’s quite a rich source to draw around, when perhaps people don’t have the words anymore.

Dr Donncha Mullin:

Sure. Could you envisage a time maybe, where people’s Facebook channels or there other social media channels would be really rich sources of their life story?

Dr Kahryn Hughes:

Yeah, well, I think for the last 10 years, there have been various software programs that diarize people’s social media participation. So, drawing across all of their social media platforms and engagement, in order to link across how they might have used Snapchat, Instagram, Twitter and Facebook around particular events, such as a birthday or something and how that might have been represented.

Dr Kahryn Hughes:

That is one of the concerns of everything going digital, is that all of those incidental written things, love letters, for example, which are just either texts or even emojis now, that those get lost and obscured through digital participation.

Dr Donncha Mullin:

Okay, fantastic. I’ve been thinking about how you actually, practically analyze the information that you collect, but I think you’ve said that it depends on what way you collect it. So, it’s not always language.

Dr Donncha Mullin:

I’m still struggling. How would you practically analyze if information was collected, such as using say plasticine models or even art?

Dr Donncha Mullin:

Now, this is showing my ignorance of art and how to interpret art, but can you give us an insight how you might do it, if it’s not language?

Dr Kahryn Hughes:

With things like plasticine, you might take photos of them. So even though the objects may disappear, you’ve nevertheless got a record.

Dr Kahryn Hughes:

You might have video recorded the process of making, to see if there was any conversation, what sorts of exchanges there were.

Dr Kahryn Hughes:

With art and pictures, you can ask children or older people to explain what they mean or why they drew it in that way, why the representation takes on that form.

Dr Kahryn Hughes:

So you have both, again, a form of engagement, which is explanatory and articulates particular ideas and meanings that that person holds.

Dr Kahryn Hughes:

So, those sorts of outputs are hugely distinctive, but unique to that individual. But nevertheless, contribute to broader tropes, storytelling tropes or mechanisms really, or means of telling or showing stories.

Dr Donncha Mullin:

Okay. There’s almost two types of information that I have in mind, collected, the story itself and then maybe information about the story and what was going through the person’s mind during that process.

Dr Donncha Mullin:

Is there a third layer? Can you combine those pieces of information with other information, to further triangulate or to further inform your research?

Dr Kahryn Hughes:

Yeah. I’m going to step back here. I think that a really common pitfall in research generally, is that people seem to feel that it’s only in field work, that data are generated or evidence is generated. That’s hugely problematic.

Dr Kahryn Hughes:

It’s problematic for the language of scholarship, for example, or discipline or your excellence and expertise.

Dr Kahryn Hughes:

We’ve done a huge amount of learning and analysis already, before we even get to the research encounter. So, field work isn’t the only crucible in which research happens.

Dr Kahryn Hughes:

The whole busy dynamic of getting the research going, finding your way through existing evidence and scholarship, finding your way to those participants, through all of the different relationships… and Katya’s research is an absolute exemplar in this respect and different settings. All of that is your research data. All of that is different forms of evidence. So, your job as a researcher, is to make sense of how you can use all this evidence to speak to your research question.

Dr Donncha Mullin:

Okay. Thank you. You mentioned how Katya’s work is an excellent exemplar of this. Katya, onto you, are you ready for some quickfire questions?

Dr Katya Sion:

Of course.

Dr Donncha Mullin:

Did people find it hard to tell their stories when you were working with them?

Dr Katya Sion:

Well, to be honest, I’ve really had the feeling that most people loved it. They were happy to get time to share their stories, to tell what they wanted to tell and the personal attention that they actually got for a moment. So, it’s been a treat for them, as soon as everything was in place, of course.

Dr Katya Sion:

I think what also helps is we use this method in our conversations, called appreciative inquiry, in which we address the conversation from a positive perspective.

Dr Katya Sion:

Appreciative inquiry says, you should look at what is going well and how can we do more of this, instead of focusing on the negative. Which often, when it comes to quality assessment, people are asking themselves, what isn’t going well? How can we fix this?

Dr Katya Sion:

Whereas you can also look, what is going well, and how can we do more of this? Henceforth, you will be doing less of the things that aren’t working.

Dr Donncha Mullin:

Sure. Sure. I love that idea. I’m going to try and apply that to all areas of my life. There, you said that generally, they did really enjoy the process, once things were in place.

Dr Donncha Mullin:

Now, what sort of things did you need to get in place to support people, to share their stories?

Dr Katya Sion:

I think it’s important in general, to have a safe environment. That’s, for example, why we made the decision to have the respondents… to interview them separately, not together, because a resident may not be comfortable telling what he or she really thinks if his caregiver is there.

Dr Katya Sion:

I think an additional factor is, it still is research. For example, when we do this on a ward, we don’t ask all residents, but we have to do randomization, to get a representable sample size.

Dr Katya Sion:

Then you need to see if these people that are the first in your randomization list, want to participate and if their family wants to participate and the caregiver and there’s informed consent.

Dr Katya Sion:

I mean, I think it’s with any research, but it is still research, so yeah, you need to put a lot in place. Then there’s still the external interviewer that has to be available to perform these conversations.

Dr Katya Sion:

At the moment, I think it’s the same in the UK as here, there’s quite some staff shortages. So, any hour that they cannot take care of their own residents is, of course, a loss.

Dr Katya Sion:

Yeah. They also see the benefit of performing these conversations. So, these are some of the challenges we’ve had to overcome.

Dr Donncha Mullin:

You mentioned it in the challenges, just the research, the very nature of it. Do you find that you could be flexible with the actual location where you did the method gathering? Could you go outside, for example, if it was a nice sunny day, or was that bound by confidentiality or other protocol reasons?

Dr Katya Sion:

I think it should be possible. However, you do have the challenges of residents, especially in the Netherlands at least. In dementia wards, you can’t always just take a resident out of the ward.

Dr Katya Sion:

Family members, we do often also provide them the opportunity to have the conversation by phone, for example, especially in these COVID times. So, that’s been helpful.

Dr Katya Sion:

Caregivers, well, usually they’re so busy, they’d rather just have a quick conversation in their work spot, than to really take the time for it, unfortunately.

Dr Donncha Mullin:

Yeah. The time pressures are shared with the UK here and Ireland, I think. Did you find in general, that one discussion was enough, or did you tend to go back to the same people multiple times?

Dr Katya Sion:

Surprisingly, we’ve seen that on average, our conversations only take 20 minutes, which is much shorter than you’d expect when you are talking about narratives.

Dr Katya Sion:

Yet, I think because of the framework, and we do have quite a clear research question, we want to know how they experience the quality of care.

Dr Katya Sion:

That doesn’t mean there’s no space for someone’s life history. However, this isn’t our focus. So, you can get to the core quite quickly.

Dr Katya Sion:

We see in our analysis that, of course, sometimes you’d like to know a bit more. You’d like to go deeper, but you can do that when you give the stories back for quality improvement initiatives. You don’t need to do that within your data collection, which makes it quite usable, in practice.

Dr Donncha Mullin:

Okay. Thank you. Last question for you, Katya. What might you do with the information or stories, once this study is finished?

Dr Katya Sion:

Well, I think very important actually, in our whole study, is that the main objective is maybe not even to collect the stories for research, but it is to collect the stories for quality improvement initiatives.

Dr Katya Sion:

I think that’s also linked to the view of our living lab. We do our research in order to help practice. So, what we do is, we discuss with the ward where we’ve performed the conversations, how they would like to get the data back.

Dr Katya Sion:

We’re actually experimenting with text analysis, like text mining, to actually analyze these transcripts on a different level.

Dr Katya Sion:

We’ve also developed a matrix to plot these triangular interviews in a graph, in which you actually can see, to which extent do the perspectives agree with each other or not and to which extent are they positive or negative?

Dr Katya Sion:

These are forms of analysis that we give back to the wards. They can use this with the stories themselves, to decide, what do we want to work on? What are we proud of? What would we maybe like to improve? I think that makes it very valuable.

Dr Donncha Mullin:

Okay. This has been a fantastic conversation. It’s not over, but I just wanted to recap on what we’ve learned so far.

Dr Donncha Mullin:

Couple of points, one important one being that oral histories and storytelling are distinct and different methods. It’s not one method. They are importantly different.

Dr Donncha Mullin:

Another very important one for me was that, Katya’s team use relationship-centered care and they focus on a care triad. This has benefits for improving communication across the team.

Dr Donncha Mullin:

A third learning point for me was this term, appreciative inquiry. It’s something that I’m going to try and carry on through, in all areas that I can apply it.

Dr Donncha Mullin:

In this final part of the show, we’re going to discuss common pitfalls, challenges and how to avoid them. Which when it comes to this research method, I can imagine that there might be a few.

Dr Donncha Mullin:

Katya, tell us, what challenges did you come across in delivering your research, and what might you do differently?

Dr Katya Sion:

Yeah. I think this is a very good question, because this is also, other researchers can learn and maybe not make the same mistakes.

Dr Katya Sion:

I think part of this, I have already addressed. For example, you need to make sure that you have a good sample size because otherwise, your results probably are biased over the ward.

Dr Katya Sion:

Another thing that I haven’t addressed yet, is that it’s also very important with my research, for example, there are a lot of stakeholders involved and still actually are.

Dr Katya Sion:

That already starts within the care triad. Each participant has different needs. The nursing home has different needs.

Dr Katya Sion:

In the Netherlands, you’re required to assess quality of care from the resident’s perspective, so there’s also an accountability that you need to account for.

Dr Katya Sion:

Henceforth, I think it’s very important to involve all your stakeholders throughout your research, but also dare to not incorporate all their feedback because it’s impossible.

Dr Katya Sion:

So, you need to make sure you know what everyone wants. Then you need to also decide on which path you’re going to take and stick to that because otherwise, you’re going to have a lot of pitfalls along the way.

Dr Katya Sion:

For example, we decided to really stick to the resident perspective and to just stay close to the triad and that, eventually you can use that for accountability. That’s great.

Dr Katya Sion:

If you would look from an organizational perspective, you would never use stories because stories are such rich data, you would never be able to get to that aim.

Dr Katya Sion:

Therefore, I think it’s important to know what all your stakeholders want and explain to them the choices you’ve made, but you need to also dare to not follow everyone’s needs, because then you’ll be missing opportunities as well.

Dr Donncha Mullin:

Wonderful. Now Kahryn, Katya mentioned a couple of pitfalls there, such as not sticking with the residents’ perspective or not staying close to the triad. Are there other common pitfalls that you’ve seen? If so, how do you avoid them?

Dr Kahryn Hughes:

Yeah. There are some more general methodological ones. Analytically, when we’re either dealing with oral histories or storytelling, we’re focused on generating linear narratives. It’s potentially problematic because it might build in causality.

Dr Kahryn Hughes:

So, where the relationships between different dimensions of experience might not be causal, but express something quite different. So how people may link some aspects of their lives with others, we may treat them problematically, as researchers.

Dr Kahryn Hughes:

I think also, with structuring people’s accounts in particular ways, we always will. We’re always asking questions. When they know that we want to research them, we’ve got particular research aims. That’s why we give them information sheets. we tell them. We need informed consent, so we have to tell them what we’re doing.

Dr Kahryn Hughes:

My preference, however, is trying to keep things as wide as possible, because it can be a bit of an echo chamber, where our expectations as researchers might overwhelm our participants’ own narratives.

Dr Kahryn Hughes:

I mean, we’re treating two very different methodologies here. One, the oral history tradition is to keep as wide as you possibly can. You want to cast your net wide because you want to gather as much information about the world in which this person was living through. For that, you need a lot of time.

Dr Kahryn Hughes:

So, there are some pragmatic considerations there. Which is particularly in the context of dementia, is less one around memory. Because they may well have very good memories about early parts of their lives, but about stamina and endurance, if we’re asking them to talk for quite a long time.

Dr Kahryn Hughes:

Then obviously, with storytelling, the inclination is against being too wide and too broad because what we want to do, is people to produce a connected narrative and set of explanations about a given set of events.

Dr Kahryn Hughes:

So I think it’s worthwhile, at this point, teasing out those differences between those two methodological approaches and the different challenges that might apply to each of them.

Dr Donncha Mullin:

Okay. Now, that might be something that in the final segment, you might be able to pick apart Kahryn, because I think for time, we’re running onto the final one-minute segment where you tell our listeners what they should go away and read, to further their knowledge on this method.

Dr Kahryn Hughes:

Again, two methods. The Oral History Society have a website. The links can be shared. That’s an absolute brilliant resource for anyone to dip into.

Dr Kahryn Hughes:

They also run some fee-paying courses on the method, on oral history methods. Anything by Joanna Bornat, who is an oral historian, her work is absolutely fantastic, on talking through the implications of oral history.

Dr Kahryn Hughes:

The National Center for Research Methods have a host of research methods resources that are free to use, on oral histories. They too run methods training programs. So, it’s good to check there.

Dr Kahryn Hughes:

Also, have a look at the work of Rachel Thompson. She’s written loads. She has a podcast as well, various things about oral histories and storytelling.

Dr Kahryn Hughes:

In terms of storytelling specifically and how we collectively build stories, I think the perfect starting point is Ken Plummer’s Documents of Life.

Dr Kahryn Hughes:

He’s got a website that is absolutely dripping with resources, that’s very, very rich resource in and of itself, in which he tells his own stories. So, it’s a lovely place to start.

Dr Donncha Mullin:

Fantastic. Folks, this has been a brilliant first episode of our second season. I’ve learned so much, it’s made me want to run out into the street with my phone on record and start capturing these stories. It’s been so fascinating. I hope you’ve both enjoyed it. I’m sure listeners have too.

Dr Donncha Mullin:

If listeners want to know more about oral histories and storytelling methodology and narrative inquiry and prospective triangulation or more about the National Center for Research Methods, dementia research and our guests today, you’ll find all the links in the show notes.

Dr Donncha Mullin:

Remember, if you find this useful and learned some stuff, then please share this podcast with your friends, and/or leave a review online and subscribe to the Dementia Researcher Podcast.

Dr Donncha Mullin:

That is all we have time for today. I would like to say a huge thank you to our guests. We’ve had the wonderfully helpful Dr. Katya Sion, sharing her experiences. And in Expert Corner, the incredible Dr. Kahryn Hughes. Thank you both. It has been a pleasure.

END