Podcast – Research outside the NHS setting

Voice Over:

Welcome to the dementia researcher podcast, brought to you by dementiaresearcher.NIHR.ac.uk, a network for early career researchers.

Megan Calvert-O’Hare:

Hello and welcome to our podcast recording for the NIHR dementia researcher website. This week, we’ll be discussing establishing and delivering research outside of an NHS setting. Today I’m joined by Katherine Quinn, Charlotte Stoner and Suzanne Hill. Catherine is a senior research fellow at the University of Exeter. Her interests include the experience of caring for or supporting someone with dementia and she is currently working on the IDEAL study, which is a large cohort study of living well with dementia.

Megan Calvert-O’Hare:

Charlotte is a research associate at UCL. Her interests include psychometrics, positive psychology and outcome measurement. Charlotte is currently working on exploring the cognitive footprint concept with a particular focus on the cognitive effects of medications. Suzanne is a PhD student, a clinical teacher, and also a pharmacist at the university of Bradford. Her research interests include medication management when people with dementia are moving between a care home and hospital setting.

Megan Calvert-O’Hare:

Thank you very much for joining us today and I look forward to listening to your experiences on this interesting topic. Research occurs in a range of areas and not all of these are clinical or within an NHS setting. Research can revolve around the environment a person with dementia finds himself in and the impact that that environment has on the person. For example, research can be conducted in someone’s own home or a privately run nursing home. We know that dementia research is changing and care support, activity and environment are getting the much needed attention they deserve.

Megan Calvert-O’Hare:

So, as more and more early career researchers choose to work in this area, we need to be prepared and help them understand the differences in setting up delivering or engaging with people with dementia in these settings. We hope today’s panel can shed some light on this for us. So, let’s begin. It would be great if we could give our listeners a bit of a background as to how the research you’re doing is taking you away from an NHS setting. Suzanne, how does or how will your research take you away from the setting?

Suzanne Hill:

Well, my research does include NHS settings, but that’s more the next phase of the research. So, my research is in three phases, my PhD. The phase one is best in the care home setting. So, it’s looking at the care home perspective of the transition that I’m focusing on. So, when people living with dementia move between the care home and hospital setting. So, that’s both the admission process and the discharge process.

Suzanne Hill:

And then there three phases. The first phase will be looking at the care home aspect of medication management at those transitions. And the second phase will be looking at hospital and of those transitions. And then the third phase will bring it all together. So the phase that I’m currently organizing at the moment is phase one, which is best in the care home setting.

Megan Calvert-O’Hare:

Okay. And Charlotte, how does your research take you away from an NHS setting?

Charlotte Stoner:

Well, my current role hasn’t actually taken me away from an NHS setting yet. But, my PhD was very much about doing research in the community. So, I did focus groups where people with dementia in sort of community settings. So, places where they were already going to meet charities and things like that. I also did a lot of research which involved going to someone living with dementias, their own home and completing questionnaires with them in their own home.

Megan Calvert-O’Hare:

Okay. And Catherine.

Catherine Quinn:

Okay, so I work on the IDEAL study and any IDEAL study won’t have a remit around developing staff, the training for the researchers that work on the study because our researchers will go into care homes and enable me to do this. I draw on my experience of my first postdoc where I worked on a trial in care homes for about three years working with people with very severe dementia.

Megan Calvert-O’Hare:

Okay, great. Catherine, can you talk through any differences that might be in getting ethical approval to do research? For example, in a care home, which is where you said you did your first postdoc, and is it different to getting NHS ethics?

Catherine Quinn:

I guess we went down the same route of getting NHS ethical approval. Because we are working with people with severe dementia, there was issues around capacity to consent. So, anyway I don’t see it being any different. I guess there was some different things to think about in terms of protection of vulnerable older adults. I’m also thinking about the environment they work in. Again because most research I guess we do in the community where we go and visit people in their houses is a little bit different when you’re working in care homes where it’s completely different environment and there’s multiple people around and you’ve got to deal with the other residents in the home and staff as well. So, it’s slightly different but I guess there’s similarities in having information sheets and things like that.

Megan Calvert-O’Hare:

Okay. And Charlotte, was there anything different about setting up a non NHS study that you found for yours?

Charlotte Stoner:

Well, as mine we’re sort of going into people’s own homes, it was very much safety and lone working. So at the research ethics committee meeting I went to, I was asked by one of the committee members if I’d considered the alligator in the bathtub scenario, which is basically about dangerous pets. So, thankfully I’ve never come across an alligator in a bathtub, but it was about-

Megan Calvert-O’Hare:

Have you come across dogs, scary dogs?

Charlotte Stoner:

I’ve come across dogs, but you know, I’m fine with dogs. So, I suppose for someone who maybe doesn’t like dogs or has an allergy, then it’s going to be quite important. So, I think that question was have you considered it and what would you do about it? And I think, so, the importance for me was lone working procedures.

Charlotte Stoner:

So, if you’re going into someone’s own home in the community, you’re out of the office for long periods of time. And it’s about your own safety. So, maybe having a diary in the office where it says where you’re going, what time you’re due to arrive, and what time you’re coming back. Maybe even texting a colleague to say, “Here,” texting and calling to say you’ve left that person’s home. So for me it was just very much about maintaining safety in the community.

Megan Calvert-O’Hare:

Yeah. Okay. And, did you ever figure out whether you can accept a cup of tea? Which was a question.

Charlotte Stoner:

I’m not sure.

Megan Calvert-O’Hare:

Came up earlier.

Suzanne Hill:

Can you?

Charlotte Stoner:

A lot of people I speak to say yes, because I think there’s an issue around building rapport. Particularly because I used to do, talking about care home research, right before I did that I was working with people in the houses and there is something about building rapport with people and the technical or if you like pets, it’s something to start building rapport when you go in there. I always had my colleague who I used to always work with would never do that, but she always used to say to people she had a long drive on the journey back. So, but-

Megan Calvert-O’Hare:

To be polite.

Charlotte Stoner:

To be polite, yes, and I’ve heard some horror stories of people having sort of washing up liquid still in their tea and things. But I think it’s taking that part, it’s about building rapport. So, and it’s thinking about ways in which you can do that before you start doing the research.

Megan Calvert-O’Hare:

Yeah, it does establish quite a nice relationship when you first enter someone’s home. It’s sort of a natural thing to offer someone, is a cup of tea, I guess.

Charlotte Stoner:

I eat lots of biscuits. We used to have lots of cake, some tea. For some people, having a researcher coming into their home was like a special occasion and they would have the cake and it was really nice.

Suzanne Hill:

I never got offered cake.

Catherine Quinn:

You obviously want treat in their home.

Megan Calvert-O’Hare:

So, sort of similar, when you go into care homes, what sort of things do you have to think about? Practicalities, like working with the staff and do you have to get the specific staff approval to do the study within the care home?

Charlotte Stoner:

Okay. So there’s a big issue with research in care homes which is around who are the gatekeepers? And different homes have different rules. So, some homes, it might be the big organisation that or you might have one big owner that owns multiple homes. Some are sort of more private. It is about working out who you need to get permission from. Even if you have permission from the big management company, you still need to make sure that you have permission from the care home manager.

Charlotte Stoner:

But it’s also about understanding some of the logistics of the home and how things are operated there. So, for some of the homes, I work with 12 homes and some of them, perhaps it was the matron who had more sort of influence or power in the home. So it is a little bit about understanding, but I say it’s really important to make sure that everybody is on board. And some of that might even be about spending some time in the home before you start your research. So even the staff know who you are.

Charlotte Stoner:

I mean I used to wear a name badge and the reason we did that is because staff kept thinking we were the inspectorate and we weren’t. But it was just a way of, it said researcher. And it was just a way of ensuring that. But I think there is, what we learned from doing it, was the importance of spending time there beforehand so people got to know who you are and why you were there on what you were doing there.

Megan Calvert-O’Hare:

Yeah. Okay. So Suzanne, you said that your research is about the continuity of care when people are moving from a care home to a hospital setting. So, you’re dealing with both NHS and non NHS settings. Does this double your workload, or do you think they overlap a lot or?

Suzanne Hill:

Well, because of the nature of the way that the study setup, phase one will kind of inform the design of phase two, so I’m not entirely sure what phase two will consist of yet, but there will certainly be ethics approval that will be required for phase two as was required a phase one. For phase one, it was a research ethics committee process, which I had to go through, so I had to fill in the form and go to the committee.

Megan Calvert-O’Hare:

Does it help having ethical approval for phase one, do you think, for phase two?

Suzanne Hill:

Well, it certainly helps from the perspective that I’ve been through the process. So, it helps the fact that I… I was actually unsure about whether I needed the full IRS form, so I’d filled the full IRS form in as well. So, I’ve been through the whole process. So, I have had practice if you like, both in filling the forms in, attending the committee. So, yeah, that’s all positive. I suppose the process is maybe slightly different for care home versus hospital, but again because of the way that I was recruiting care homes to the study, I wanted them to be co-located with the hospitals in the study. So, I did gain kind of interest of the hospitals that I was wanting to focus on as well, prior to that.

Suzanne Hill:

So, that’s kind of all lined up I suppose for the first two. But yeah, I would go along with what Catherine said really in terms of the ethics. And also in terms of the dementia aspect of it as well, adds complexity to the whole ethics process in that you’ve just got to be extra careful that it’s, yeah… The consent process as well because I’m including people with and without capacity to consent, but kind of [crosstalk 00:11:29] understanding both of those processes are different. And so, ensuring that you’ve got all the paperwork in place and all the forms in place and that you understand all the process and procedures that go alongside that.

Megan Calvert-O’Hare:

So with that, you have to understand the processes and the procedures and the forms enough to then explain to someone, that procedure. So, sort of following on what you were saying, Catherine, about people with severe dementia and capacity, what do you do in that situation?

Catherine Quinn:

Well obviously, with any individual you have to assess whether they have capacity to consent to take part, whether they are able to retain the information recall, so everybody is checked. Even if they’re in the severe stages, you still have to check whether they’ve got capacity. And then, for us, it was a process of approaching what we call a personal consultee which is a family member or friend who you can seek advice from as to whether they felt that the person would be willing to take part in the research.

Catherine Quinn:

Another alternative is what we call a nominated consultee which is more of a sort of a paid professional, so it could be a paid carer. I think the really important thing to say is even if you have consent from a personal consultee or nominated consultee, within the research process, you must still look out for signs from the individual to check that they’re happy to take part in the research and they’re not getting too distressed and that’s really important.

Catherine Quinn:

Particularly with severe dementia, you have to look at things like body language. Are they getting tired? And you have to take that into account as well. Even though you’ve got somebody who’s signed off on a form says it’s okay for them to take part in the research. You as a researcher have to judge yourself whether they’re happy with that process. But also whether that changes throughout the research process and it’s something that we were checking throughout. We did lots of observational work, but it was about looking at any signs to indicate that they are in distress or getting tired.

Megan Calvert-O’Hare:

So, sort of following on from that, if you saw something in a care home that concerned you or with the patient, do you have an obligation to report that? Who do you-

Catherine Quinn:

So that’s kind of covered with your ethics. So you have the protection of vulnerable older adults. For us it would have been going back to speak to the research team and discuss it with them. But it is something, I think this is the great thing about having to do your ethics form is the fact that you have to think about these [crosstalk 00:13:52] and that’s, I think sometimes people find ethics forms quite challenging because they’re so long and they take for ages but it gets you thinking about the research process and it gets you thinking about what would happen, what you need to think about and it’s good to think through these things before you find yourself conducting the research because if something happens there’s nobody around you to tell you what to do. You have to think about it yourself and if you’ve thought about it for the form, you’ll have these procedures in place.

Megan Calvert-O’Hare:

I guess that’s true for you as well, Charlotte, because you’re actually going into people’s homes. You touched on it a little bit earlier, but is there anything else that you prepared for before you went in to their homes?

Charlotte Stoner:

Sometimes when you’re going into someone’s home and it can be slightly unpredictable. There might be sort of clutter and there might be sort of things in the way, and it might be a bit sort of haphazard, even, if you sort of trip over things. But I think it’s just about being prepared for that and being able to sort of step around anything that might trip you up. But yeah, I think also sort of going into someone’s home, you’re a guest in their home and you have to be polite. But then at the same time, I remember when I was going to people’s home, I was quite conscious that I was there as their guest, but also there’s a level of politeness with them. So maybe they’d start the questionnaire and then they decide actually they didn’t really like the questions and they weren’t really, but out of politeness, they seem to want to keep going.

Charlotte Stoner:

And I think sometimes it’s about having the confidence to say that you’re helping me out with this research. If this is something you don’t want to do, it’s absolutely fine. There’s no pressure on you to carry on with this. So, I think sometimes it’s about having the confidence to have that conversation with them that even though they’re being polite and they’re kind of answering, but you can see they’re not really into it, they don’t really want to do it. It’s about being able to stop and say, “Is this actually something you want to do? Because it’s absolutely fine if you don’t, that’s fine.”

Megan Calvert-O’Hare:

Okay, great. So, my final question is why do we do this? What do these non NHS settings provide by way of insights or benefits for research that we might not encounter in an NHS setting? So, maybe we’ll start with Charlotte?

Charlotte Stoner:

I think, for me it was about the amount of participants. So, because I was going out to someone’s own home and the community, I could go and see people who maybe didn’t have someone there to act as a carer or a supportive other. So I was still able to go and see them and get their views and include them in their research. Whereas if I could only do it in an NHS setting, I think that would really limit who I could talk to. Then people might not have transport, might not be able to get into where I’m doing the study. So, I think it allows you to see the breadth of experience for people living with dementia. All these people in very different situations. And it allows you to go into that environment and get their views within an environment they’re also quite happy with and comfortable with.

Megan Calvert-O’Hare:

Yeah. Catherine?

Catherine Quinn:

Yeah, no, I agree with Charlotte’s points and I was thinking about care homes is, a lot of people with dementia will end up in the sort of care home setting. And so to be able to do research, but then not be able to work with people who are in the more severer stages. I think there’s a real… I mean, I really enjoyed working with care homes. There was the opportunity of getting a better understanding a little bit about how the care home environment itself can have an impact on people.

Catherine Quinn:

But also, we were doing staff training and so, having the opportunity to work with staff to feel that you were having an impact, to talk to them about the research, to see the difference it was making in the homes is something you don’t get if you’re in a sort of lab setting and it is about seeing the changes but also, I learned a lot as well, like I still use those experience and think about sort of future research I’d like to do because you can start to understand what’s happening with those environments and where they could benefit from support from research.

Megan Calvert-O’Hare:

You said that care homes can be quite different to each other. Have you found that you’ve sort of gone into one and maybe felt that that’s a really good way to run a care home and you want to sort of transfer that up? Do you use that in your research to then take to another care home?

Catherine Quinn:

I’ve seen models, I work with 12. I work with very different ones. I work with very large ones and I work with very small homes and I think that’s the sort of thing I was saying about that being sort of… Spend some time in the environment and be prepared before you go in there because every one was different and every sort of challenges or working with the homes were different, but I think I’ve seen some very good practice. I work with some really great care staff who went above and beyond. And I think it’s nice to be able to say that, but also you can see what a good practice and you can see about how things can work and it’s not necessarily since by complicated it could be very simple changes. So yeah, I do, I really reflect on that experience in taking things forward.

Megan Calvert-O’Hare:

Okay. And Suzanne?

Suzanne Hill:

Clearly with my research question, understanding what happens within the care home is integral to answering the questions that have really, which is focusing around how the medication management systems work between the care home and the hospital setting. So, it’s an understanding of the organisational context, the staff working within the care home, how the organisations are structured. Similarly, to what Catherine was saying, the differences in the care homes, both in terms of their ownership and their size, their CQC ratings, just the whole breadth of organisations that are out there will be kind of a key aspect of my study to try and recruit to a wide variety of homes because it’s a qualitative study.

Suzanne Hill:

So it’s a recruiting tool, a wide variety of homes and understanding the differences between those homes. So yeah, it’s understanding what happens within those organisations and the staff that work within them. And obviously, taking into account, what it is that care home residents want, the person centered aspects of that, the safety aspects of that and also their families.

Megan Calvert-O’Hare:

Yeah. So I guess taking out of an NHS setting, you really are making it patientcentric because you’re looking at where they live and what they need and how their lives are outside of hospital and how you can help. Has anyone got anything else to add to this conversation?

Catherine Quinn:

Take the opportunities if that’s where your research takes you, be prepared, try and think about some of these things before you start off in the research process. I think often there was a lot about thinking on your feet when you’re in, but try and reflect on these things and I say that’s why doing the ethics form, although it is an epic task, but it does help you to sort of think through these sort of what might happen in this situation and what are the risks and that there are benefits to filling in that very, very long form.

Charlotte Stoner:

I think non NHS settings, they can be slightly unpredictable, but if you spend the time when you’re going through the IRS form and it is quite good because it does make you think about what you would do in these scenarios that you just might find yourself in. So I think as long as you can-

Megan Calvert-O’Hare:

Alligator in the bath?

Charlotte Stoner:

Yeah, exactly. As long as you can think far enough ahead and, but also understand that there might be some unpredictableness, then I think you’re fine.

Catherine Quinn:

And I think talk to people. This is the great thing about this podcast, talk to other people who’ve done research because I’m always really happy to sort of relay my experience onto others and to say, once you’ve done that sharing experience and I think that’s the sort of pay for doing this type of research as well.

Megan Calvert-O’Hare:

Okay. That was great.

Suzanne Hill:

And being open minded and not expect, they’re not NHS settings. And that’s the beauty of this research that you’re expecting things to be different to NHS settings. Appreciating the benefits of your research in the forefront, which you will have to do for ethics anyway. And considering what the benefits of your research. Half of the stuff in the care home, the residents and their families. So yeah, understanding that they are different. Doing the plumbing before you go in.

Suzanne Hill:

So, do some good scoping work, talk to people, talk to the stakeholders that are involved in your research. So, within my research we’ve got panels, we’ve got a care reference panel, we’ve got a stakeholder reference panel. And they’ve been really helpful in talking through some things before going into the setting as well.

Suzanne Hill:

And obviously, academic colleagues that work within the care home setting, speaking to those people is invaluable. And I think just being mindful, I think something that Catherine touched upon, about when you’re going into the settings, it might be kind of disrupting of the routines that are going on in the care home and just be mindful to be sensitive of the context that you’re working in and try and be as minimally disruptive as possible and being respectful of the fact that you’re kind of there in a, and again, as Catherine said, especially when you’re observing people, the fact that that can be perceived as being slightly uncomfortable, that people are being observed and it comes across as inspector like if you’re not careful and you don’t kind of do it in a human way.

Suzanne Hill:

So, yeah. So, I think that’s all I would say and involve and engage in people. There’s a big push at the moment in involving staff in even the design of the research, that kind of staff and residents and family members, taking account of what do they think’s a good idea, right? Really from the early stages. So you’re thinking about they might fit, where their place emphasis and that may influence just a design. It may influence the tools and the research instruments that you use. So kind of using it in that formulation fairs and it all helps with ethics, as well. If you’ve had that involvement, that PPI patient public involvement all helps the ethics process as well.

Megan Calvert-O’Hare:

Okay, great. Thank you so much. I would like to thank our panellists, Catherine, Charlotte, and Suzanne and we hope you enjoyed this recording. Please remember to subscribe to this podcast through SoundCloud or iTunes. Tell your friends and colleagues and share via social media using the hashtag ECR dementia. Tweet @Dem_researcher if you’d like to get involved or have any suggestions for future podcasts, make sure you check out our website, dementiaresearcher.nihr.ac.uk where there’s more practical advice and tips on topics like we’ve discussed today. You can also use the community page of the website to engage with our panellists this evening or any others, and please do ask us any further questions you might have. Thank you and come back soon.

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