Transcript: Supporting practitioners through the ethical research journey

Podcast Episode: Supporting practitioners through the ethical research journey

What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.

CR - Catherine-Rose Stocks Rankin

An event entitled ‘Navigating ethical approval and access in social care research’ was held on the 28th of January 2014. It provided an opportunity to discuss the routes for gaining ethical approval for social care research and to provide a platform for the launch of the guidance document developed by a working group led by Scottish government. In this episode, Catherine-Rose Stocks Ranking, Iriss Associate, speaks about supporting practitioners through the ethical research journey taken on the PROP (Practitioner Research and Older People) project.

CR So yes, I am just going to give you some insight from our work with practitioners. It was a project called ‘PROP’, which stands for Practitioner Research Older People, and it was a partnership between Iriss and the Centre for Research and Families and Relationships at the University of Edinburgh. And at that time I was the research associate on that project, so I was kind of the dogsbody, I was employed for 2 ½ days a week to manage the project and lead on lots of the research training and help support some of the practitioners through the ethical processes that they needed to negotiate as well as all of the other learning that they were doing. And when I was thinking about this presentation, I started to think about what the ethics processes were like because we had a range of practitioners involved and a range of organisations, which I will describe in a minute, but also what the ethics of their research was like, and I sort of see those things as two related ideas. So there was the kind of ethics guidelines and processes and clearance, but then there’s also what is ethical research, which Alison was outlining there. And I got to thinking about research ethics, the kind of approval process as the bridge, it’s the thing that facilitates and can help support a kind of ethical research journey, and so I am going to take you through kind of three stories and sort of use that metaphor all the way through.

First I just wanted to give you a little insight into what research meant for some of the practitioners involved. I think it was quite a challenging journey for many of them but one of the big things that we took away is that it offered an opportunity for critical reflection and reflective practice, and so stepping away from your kind of day to day practitioner role and having to think critically about that meant that people got to see their work a little bit differently. And one of the practitioners called this a ‘reboot’ effect, and she said, when I was kind of asking her about how the research went and what the experience was as a whole, she says “a change is as good as a rest, it’s reminded me to not just work on a production line and speak about an up, to try and work on my own standards and ethics as opposed to the demands of the machine”. So, I think that kind of echoes something that Alan said about the ethics of social work, you know different kinds of practice, and how people need an opportunity sometimes to reconnect with that, and in this case research was a tool for her to do that. And so I chose this image here to kind of think about switching ourselves on, thinking differently, reconnecting. So maybe I will just walk you through a little bit about the project where we are kind of talking about that, so PROP involved 6 organisations, Alzheimer’s Scotland, Glasgow City Council, Midlothian Council, NHS Lothian, Vocal Midlothian, which is a carers organisation, and West Lothian Council, so there was a range of local authorities, charities and the NHS. And so in some cases it was a really nice example of integrated partnership working, because people were coming from very different perspectives, even the people who had similar roles, say within the NHS, they were nurses, they actually had … they were on different levels within that organisation. Some of them had many years experience, some of them were new, and it was the same for people who worked within the statutory sector, some of them were very experienced and some of them were new, so … you might think, as you would know, you might think, ‘oh well, the difference is going to actually be between the NHS and Social Work’, but sometimes there were quite stark differences within those groups as well.

We had nine practitioners who completed the programme and we kind of aimed … the aim of PROP as a whole was to support collaboration between researchers and practitioners, but also to support collaborations amongst practitioners themselves, and we hoped to kind of increase the volume of practitioner led research and increase the interest and uptake of that research within practice. I think we achieved that actually, so all of the practitioners who were involved did complete a research project and there’s all kinds of information on our blog, which I will link to at the end, and lots of those projects have now led to kind of changes in practice.

So first story … oh, first I should say actually there was kind of … because we had a range of practitioners involved there was actually four different ethical guidelines and processes that we were working with, so some of the local authorities that we were working with had in-house kind of ethical approval processes in place already, so Glasgow City Council and West Lothian Council had a kind of guideline and process for those practitioners to go through, Alzheimer’s Scotland, Midlothian Council and Vocal didn’t have an ethical approval process in place, so we had to support those organisations to create one. The NHS, as some of you will know, has kind of two branches to their ethical approval process, so one is if you are doing a kind of service review, an audit, then there’s kind of one very straight forward process, and if you are doing research, then you need to go to a formal ethical committee, which is very involved, and one of my stories deals with that.

So from my perspective, I was sort of looking at our different practitioners, trying to think of how we have all got individual research projects but within your organisation you all have different processes that you need to go through before you can even begin, so we had to support them to do that.

So the first one is sort of a positive story about … and there’s the bridge metaphor, that the ethical guidelines and the approval processes that were in place facilitated really good ethical research and a kind of rethinking, reframing of people’s practice, and so this is touching on the two practitioners who were from Alzheimer’s Scotland, who were working with people with early stage dementia, and they went through a kind of self audit with us to see where the ethical issues might be within their research, and then we supported Alzheimer’s Scotland to create a kind of formal guideline, they went through that with their organisation and then they went off and did their research. So, one researcher was interested in music therapy and the benefit to carers and people with early stage dementia, and the other was sort of doing more of an evaluation of her particular service, but in both cases these were service managers who had direct relationship with the people who they were working with on the research projects, so they were people who accessed the support they provided for Alzheimer’s Scotland. So there are ethical issues there because you have two roles. And I think I will just read a little bit, there’s quite interesting reflections within the reports that they wrote, and one of the practitioners said … ‘As a practitioner I was aware of my position of power as someone who not only knew the participants but was also providing them with a service. I assured my participants that if they didn’t want to participate it wouldn’t influence the service they received. As participants had to have capacity to consent they were usually in the early to moderate stages of their illness. During the discussion group with people with dementia, I had a co-facilitator, while it was important to recognise that it is my dual role as a practitioner and researcher, it may have been difficult for the participants to see me as a researcher. But in the end I don’t feel it caused any difficulty, ultimately it was a support. One carer said, “If it hadn’t been you, I wouldn’t have taken part”. So within this position she was building on her existing relationship with people who access support, there was a trust there within the service that she provided, and so the carers and the people who came to her service felt able to participate, I think, with her because of the interpersonal relationship that they had, and she talks about being aware of power, when she finished the programme she started to say things like, ‘I really think differently about the people who access support, I have a much more deeper understanding about memory loss, about the condition that people were in", so doing the research and talking about music, talking about things that were a bit different from her regular practice helped her to think differently about her role and it also made her very aware of the power position she was in, because she was very conscious that people might feel they couldn’t access services if they didn’t have positive things to say. And that’s kind of echoed by the second practitioner from Alzheimer’s Scotland, who was doing a much more rigorous service review, and she felt it was very important at every stage to say, “please tell me things that aren’t working, none of this will impact to you, you can definitely still access services even if you have things to say that aren’t great right now”. So I just wanted to highlight that in the kind of ethical clearance processes, it says things like … ‘do people have the capacity to consent … ’ but it doesn’t really ask you how are you going to negotiate your dual role as a practitioner and a researcher, what’s going to happen if people feel threatened that they can’t use their services. And that’s something that these practitioners were able to unpick, I will come to this later in the lessons learned, but it was something we had to create space for to think through.

The second journey is a bit different. This image is two bridges because we had two practitioners who were working together, one from Vocal Midlothian and one from Midlothian Council, so two different organisations, the project was joint and it was a research project about the carers assessment, looking at the way Vocal Midlothian does their carers assessment and the way that Midlothian Council does their carers assessment, very different processes, a really interesting research project, and the point of it was to learn, the two organisations were meant to learn from each other about the different processes that they have, about evaluating carers needs and the conversation tools that might be used, the forms that were used, so it was a very kind of structural investigation of two different organisations approaches to carers assessments. And very much a model of integration, because they had to work together all the way through, designing the research project, doing the focus groups, doing the analysis, both practitioners went through the guidance at their individual organisations which we had helped to support at Midlothian and Vocal, but one of the things that came out was that the data could not be shared, so any confidential information on a carers assessment, or recorded, could not be shared between the two organisations. So the partnership working became very challenging because the practitioners had to figure out how to bracket off and anonymise data before they could even have a conversation with one another, which is unusual, I think, sort of from an academic context, once you are kind of partnered with someone, there’s a sense that the researchers are sort of save space, that if you are working collaboratively on a project you are able to share the learning as it’s emerging, and so the idea that you have to bracket off some of that confidential information from your research partner was difficult for them, but they negotiated it and found their way. What’s interesting for me is that they both shared in the focus groups, so if people agreed to participate in the research it didn’t matter whether they were people who accessed Vocal’s services or Midlothian’s, it was only information that was kind of already recorded, so previous carers assessments, things that were kind of within the institutional record couldn’t be shared. So there was sort of .. one half of it was fine, but the other half of it wasn’t fine, so there was a bit of a delicate negotiation. And I think it’s just something to highlight as we think about integration going forward, about how we can think through different organisations working together and what the issues might be, because I don’t think that they, or we, expected that that would be a problem.

Some of the insights that they had about their ethical journey though, were things like the benefit of having the two practitioners from different organisations involved meant that they were always able to check each other and question assumptions, so there’s all kinds of language that would be used at Midlothian Council that was not used in Vocal to describe carers or to describe people accessing support, and they were able to say, “what do you mean by that term … what do you mean by that tool that you are using, I don’t know what that is”, and so when you are in your practices, all kinds of things that you do every day that seem very normal to you and your colleagues, but then somebody else coming in gets to ask those really useful questions, I think that’s where some of the really good learning came from on this project. Something else they learned was that there was all kinds of emotional sensitivities to people coming into social work or people coming into Vocal, and so the way they negotiated space became very important, that not everybody felt comfortable coming into the council to do a focus group to talk about the services, particularly if they didn’t have good things to day, so they found it was easier to use Vocal for that. And that was just one of the things that came out about how people perceive, say the Council versus Vocal, the charity versus the statutory sector. And I think if they hadn’t been together, they might not have noticed that, so there was really good insights that came out of partnership working, but then some challenges as well. I think in this case the ethical guidelines were there, they supported that journey but they just didn’t ask the questions, probably they created a bit of a barrier between sharing information, so that’s why that image has two bridges … in the same direction but not necessarily joined up.

The third one is a little bit more challenging, this one was the NHS practitioner, whose research was on vulnerability, she wanted to know if people coming into the NHS felt more vulnerable as a result of their engagement or did being in hospital make them feel vulnerable, and this was based on a very personal experience that she’d had with an older woman who had come in and she was going through her kind of admissions assessment, and the lady said to her, “why are you asking me all these questions about my vulnerability, I don’t feel vulnerable, I don’t understand these questions that you are asking me about my capacity, I feel fine”, and so she started to think, actually sometimes the questions we ask with the perception that we have, you know, sets people up to feel worse, to feel vulnerable in a way that they might not feel, and it doesn’t mean that they aren’t unwell, it doesn’t mean that they aren’t in need of attention, but the way that they perceive themselves, she felt was very important, so she wanted to ask this question, and when you sat down and looked at the NHS guidelines, we said “well it’s not really an audit, its not really a service review, it’s a very open ended question, it really fits much closer with the NHS’s definition of research, and that means you need to go through this ethical clearance process which is very involved” … I don’t know if anybody here has come across it, but it’s quite a lengthy form, she has to go to some training to figure out how to fill in the form and she filled it in in December, so the project started off in June, we had a few training sessions, people sort of … we were meant to get underway that Autumn with their research, she filled in her form in that Autumn and had her first research ethic committee meeting in December of 2012, and she wasn’t actually approved until July, so it’s a very long … and I mean at that stage, the PROP project was only a year long, so going through research ethics that takes seven months just wasn’t really feasible, so she wasn’t really able to complete the research the way she’d wanted. But one of the things that I thought was quite interesting that came out of that process for her was that the methods and the kind of type of questions she was asking just didn’t fit with the kind of regular research questions I think that would be asked within the NHS, so a lot more very scientific research, things that are very involved, much longer projects with much longer timelines, and she was asking this very exploratory question, you know, “how do people perceive their own vulnerability?” She didn’t know what the answer would be, so there wasn’t … she couldn’t really figure out what the next step would be … she said I just want to ask the question, and she said that when she described her first meeting with the Ethics committee, she said it was just really difficult because they kept saying … “what happens if their view of vulnerability is different from mine or different from the clinicians or different from the nurses, what are we going to do, everyone is going to be in conflict?” And she was saying “well no, we just need to know, it doesn’t mean that anybody else’s opinion isn’t valid, it’s just important to ask the person accessing support”. So I think from her perspective, this was a very normal thing to do as a nurse, ask people how they were feeling, from the Research Ethics committee’s perspective, it was totally radical, so there was kind of incommensurate … we value positions there that need to be unpicked. So yes, unfortunately for her she did some of the research but never really was able to finish the project as a result.

So, I think what I wanted to take away from this in some ways was that there is all this energy within the practitioners, certainly the practitioners in PROP, but I mean I think that’s just a small group, I think it’s across the board, people are really interested in improving their practice, people have a lot of questions about how they might go about doing that, and we were very lucky we had some funding from the ESRC, it paid for a lot, it opened up the opportunity for these practitioners to be involved, we had very supportive organisations who gave them ½ a day week to do their research within their practice, and we produced really wonderful things as a result, but there was a lot of effort there to kind of channel that journey and I think the ethics processes are one part of that and the research training that we offered was another part of that, we also had mentors involved and so that was like a third part. So when Alison was talking about those different steps, I was thinking, I don’t actually thinking … even in my own research, that I have been asked to rigorously think through those stages, sometimes an ethical clearance process is just a tick box, you know … ‘do people have capacity to consent, yes, what are you going to do with your data, are you going to make sure it’s secure, yes I will … but how do you feel as a practitioner asking people who use your services to tell you honestly about them and what if they say that they don’t think they are very good, what are you going to do about that, how are you going to feel’ .. these are different … for me, that’s ethical research and it’s not always encapsulated within the clearance process.

My metaphor about this kind of channelling here, trying to figure out what to do with all that energy and guide it so that it can go through the kind of research process successfully, so that example of the NHS practitioner, she didn’t finish, and I think she was quite disappointed that she didn’t finish, it was a lot of work, it was ½ a day week, various stressful meetings with the ethics clearance committee, people that she really wanted to speak to, questions she really wanted to have answered and then it wasn’t finished, so we didn’t successfully channel all of that energy and drive in the way that we would have wanted. Some of the other practitioners, I think we did, so I guess I have a few lessons learned, I think the first is that ethical guidelines and ethical clearance processes are just part of that larger ethical research process, but we shouldn’t think of them as all of it and if you stop just at the questionnaire or just at the ethics committee’s ruling, then you are only getting halfway there. But ultimately they need to facilitate that process, so I think we need to think of them as a support or a barrier, and that it’s up to us in some way to ask those questions and change some of the processes if need be, to make sure that they are a support where they can be, and I think particularly in the case of practitioner research, it’s a very unique kind of research, it’s very different from a PHD student going into an organisation, I don’t have any stake in that organisation and I don’t continue to work there when my research is finished, that’s very different, and I think also understanding that practitioners probably have a very sophisticated and nuanced understanding of people’s capacities and ability to give consent. So the people who worked at Alzheimer’s Scotland had a much more nuanced understanding of early stage dementia than I would, and if I was sitting on that ethical clearance committee, I probably wouldn’t know what questions to ask, and when I supported them to go through that process, I said “you have to trust your judgement, you know, you have got twenty years in this field, I don’t”. So I think there’s something about trusting practitioners to articulate and give a sense of what their research actually means because they are the ones who are usually trying to change practice, they are the closest to it.

I think too … thinking about ethical research as a tool to give insight into new practice was really valuable for people, I think they really loved the ability to think critically about their practice, so I would really highlight that as an opportunity for people, practitioner research, I think, can be quite amazing if there is space and time to do it. And I guess just to highlight too that … I think as outlined in the document, organisations have different ethical processes and it’s important for us to realise that all the different charities, local authorities in Scotland may have different ways of doing things and we need to try and figure out, ‘okay, if we are going to do partnership working, that’s the question you needed to ask right away …’ because you do need approval, you do need to go through this process, but it may be different and there may be barriers that come out as a result, so particularly that case of …

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