Jennie Eeles lecture on ‘Patient and practitioner experience of mindfulness as taught in DBT’.
This was recorded on 4 April 2019 at the ACAMH Southern Branch Research Day.
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Jennie is a Senior Clinical Nurse Specialist with Sussex Partnership NHS Trust. Jennie completed her Nurse training in 2001 and has since trained in DBT. Jennie has been researching the experience of patients and practitioners with regards to the mindfulness element of DBT as the basis of a PhD in Health Sciences at the University of Southampton.
Transcript
So, hi, I am going to be kind of summarising some of the findings that I’ve got from the PhD study that I’m doing. The study has taken quite a long time to do. I started my PhD research in 2010, but two children, three jobs later I’m still at it, but now I’m at the point where I’m about to, I’m just writing up for submission, so it’ll be submitted by the end of June. So these are very kind of like the moment findings that I’m very privileged to hear them at this stage.
I’m going to start us off with a quote from one of the participants. I was really privileged to do these interviews, if you’ve never done kind of qualitative research, it’s just amazing to sit in a room and listen to people talking about their experience of something that actually, from my point of view, I thought I had a lot of experience in but then being able to ask patients and practitioners about what their experience was was just really enlightening and interesting.
And I was also really thrilled at because I mainly focussed on young people and their ability to talk about it as well. My fear was I’d get these kind of more syllabic answers or I don’t know, but actually they were all kind of talking away about their experience of mindfulness for kind of 45 minutes to an hour. So I was able to get quite a lot of data from those interviews. So this is Philippa, one of the younger person participants.
She’s 16 years old and she says, so I’m just looking around the room at different things, and I was just sitting there. I was just like, why? What’s the point in this? We’re just sitting here doing nothing, listening to some recording that just makes me laugh a little bit, and this kind of brings out a couple of things. So in my clinical research we’re kind of having a look at what people say and trying to focus on the meaning of really and seeing whether there’s meaning to the meanings across different participants. Where there’s differences, those sorts of things.
But this quote kind of shows us one of the things that came up quite a lot and it’s the kind of what’s the point in this? And patients found it very difficult to be told about mindfulness and then being able to relate that directly to what their difficulty was. So there was a lot of things around, kind of like, yeah, but I’m telling you that I want kill myself and you’re telling me to look at a coin or you’re telling me that, you know, I’m telling you that I’m just utterly distressed.
And what you want me to do is sniff a Pringle, and they find it really, really difficult to make any kind of relationship between these two things, especially in those initial stages and for those patients that were able to kind of get over that kind of, well, I don’t understand what the point is but I’ll give it a go they did start to find some use of it, but there did seem to still be some, I’m not really sure what the point is, going on.
Interestingly, that was very similar for practitioners. Practitioners also had difficulty in explaining to patients what difference mindfulness was going to make to them and making it very clear. Some of them were more confident in doing that, but some, and mainly those that had less of their own personal experience of using mindfulness really struggled to have the confidence to say, we’re taking mindfulness, we’re teaching mindfulness because it’s going to be useful to you, and this is why it’s going to be useful to you.
The other thing that is this quote that I’ve used it for is that it shows us a little bit about another block to use in mindfulness which was self-consciousness and embarrassment. So she’s kind of saying, we’re just listening to something that’s made me laugh a little bit. I’m feeling a little bit nervous about this, and actually there was a lot of things that happened when people started to practice mindfulness that made them feel silly, made them feel, kind of, and almost ashamed of themselves, those sorts of things, and that was something that really came up as well.
So I’m just going to track back a bit now. So I’m going to go through why I chose to do mindfulness and DBT. A little bit about the research that I did use. Some of the findings, implications and the limitations as well. So why mindfulness? So, DBT, Dialectical behavioural therapy has been around for quite a few years now. Started out as a treatment for adults with borderline personality disorder, so focussed mainly on things like emotional regulation, tolerating distress and interpersonal effectiveness, getting on with other people and mindfulness being kind of the fourth module in the therapy.
It has been adapted for adolescents and is being used more widely for adolescents and the DBT treatment as manual is a lot rarer than kind of we’ll do a bit of a group or we’ll do a group and they might get a little bit of individual work. The full DBT programme is individual work, group work, phone coaching and consultations with therapists as well, but also mindfulness outside of DBT is around and about and being used quite widely as treatments. There are research papers about, you know, treatment of OCD with mindfulness, treatment of ADHD with mindfulness, treatment of pretty much any mental health disorder.
People have kind of gone, oh, I wonder what would happen if we taught these people mindfulness. Do you think it would make a difference to them? So mindfulness is becoming quite widely used and also not as a treatment as well. So it’s being promoted as a paper, a government paper, which is suggesting that mindfulness become kind of common practise in prisons, schools, occupational health, pretty much everywhere. So it feels like it’s becoming a little bit at risk of being a panacea without kind of necessarily completely understanding what’s going on with there.
So I found that mindfulness, as it was in DBT, wasn’t particularly well studied. So the way mindfulness in DBT is taught is quite different to some of the other mindfulness based interventions, in something like mindfulness based stress reduction, which is MBSR or mindfulness based cognitive therapy, which is MBCT they would be doing mindfulness meditations for around about 30 minutes, 45 minutes, something like that. So quite an extended period of time and DBT we do around two minutes. We would do two minutes of mindfulness exercise that would illustrate something about mindfulness.
So we might do a mindfulness exercise that will illustrate how we might observe a situation or how we might be non-judgemental about a situation but they’re very, very short exercises as a way of illustrating, and interestingly, some of the findings from this research were that people weren’t seeing those exercises as illustrations. They were seeing those as examples of what they should be doing. So that’s why they couldn’t quite make things up, because they were seeing that, well, in the session we looked at a coin.
Therefore, when I’m distressed I should look at a coin, rather than being able to transfer that over and say what I learned was that I can observe something and when I’m distressed I should observe what is going on. So that kind of leap wasn’t particularly happening for the patients that I spoke to. I also was well aware that in the kind of research there were kind of all sorts of mechanisms for mindfulness that were coming up.
So these kind of included things like, oh, maybe people are benefiting from mindfulness because it improves their psychological flexibility. Maybe people are benefiting from mindfulness because it’s reducing [inaudible 00:09:22], because it’s helping them to kind of not react to urges, because it’s helping them to have an emotion and not reactive. There’s probably about 20 to 30 different mechanisms of mindfulness that people are researching. So it’s a huge thing and actually there’s not complete agreement about what we’re talking about when we say someone being mindful or not mindful or what the absolute necessary things are to say that this is a mindful experience is not complete agreement about what that it?
And there’s also a lot of, kind of, tension between the state of being mindfulness or I’m being mindful and the trait of being mindful. So I am a mindful type of person. So such a wide, wide, wide, wide range of literature, believe me for your PhD. You come across a lot of it and actually not an awful lot that told me well what’s going on in DBT when we’re doing mindfulness.
And it has been subject to qualitative research in other mindfulness interventions, but it hasn’t been subjected to research in DBT.
So I chose the interpretative phenomenological analysis for the purpose of this. I’m going to call it IPA because I don’t saying all of that. So IPA lent itself well to kind of answering the question we had, which was basically well what is it like? You know, we’re asking people to do this. We’re asking practitioners to teach it. We’re asking patients to do it, but what is it actually like when they’re being asked to do that? So it lent itself well to that because it is focussed on a phenomenon.
A Phenomenon was mindfulness in DBT. It’s also idiographic. So I wasn’t going to be able to find out everything about mindfulness and DBT for everywhere. I could only do it for the people that I was talking to. So I wasn’t looking to come up with a model. I wasn’t looking to come up with any kind of generalised theories around it, but what we can get from IPA is kind of looking at the resonance with what else is going on out there. How it fits in with the rest of the research. Is there any differences that are coming out from these experiences that I perhaps wouldn’t have expected because of the research that has already been done?
It’s also interpretive. So very much keeping in mind that the outcomes of the research are very contextual. They’re contextual depending on who you speak to and they’re also contextual for me and what I pick out as being important from what I’ve read. So as a researcher in IPA, you’re kind of, you do have options about which routes you go down in terms of what seems to kind of be important. You cannot possibly follow every single kind of thing that someone says.
So you’re looking at, kind of, like what is said across the board. What seems to be kind of something that keeps on coming up? What kind of gives me an idea of what is really important about this experience? So, like I say, I started off and the initial title was going to be. What is the Adolescents Experience of Mindfulness and DBT? However, there was some recruitment difficulties, mainly in terms of actually accessing sites to recruit from, partly due to local, kind of, procedures for gaining approval, even though I had approval there was then extra local procedures for getting approval.
And then most CAMHs Teams won’t be working with all that many young people in DBT at any one time. So we ended up extending our sample to include some adults, but in the end we actually only ended up with two who were in adult services. One of whom in some definitions would still be considered adolescent because she was 22 and in some definitions it kind of goes up to 25. So I kind of had this one outlier who interestingly was quite different to what the other people said, but we’ll come back to that later.
So I had four sites in the end. I had one adult site and then three CAMHs sites and they differed slightly in what they were offering. So site A was the most comprehensive, typical DBT programme and, you know, all these others kind of some had groups, some had group individuals but then within those, the actual participants varied as well. Oh, sorry, yeah, practitioners… So practitioners recruited from the same sites, but they weren’t associated with those young people.
So the practitioners were talking much more generally about their experience. It wasn’t. So I did eight patients.
Speaker 1 – Was this as a control?
Jennifer Eeles – No, not as a control. Yeah, just different perspective on the same issue. If that makes sense. So findings, so the process of analysis is that I coded the research interviews with kind of things that just kept on coming up. They were then drawn together to see what themes were for those individual participants. So each participant had their own themes, and then the themes for all of the patients were kind of looked at with regards to one another and that gave me my subordinate themes for that data set, and from that I was able to kind of think, well, how do these fit together? What does this tell me about the experience? And then I came up with some superordinate things for each data set. So I had set of superordinate things for patients and superordinate things for practitioners.
And then I used those to then come up with these high order concepts. So these speak to the experience of both patients and the practitioners within the research. So I’m just going to take you through kind of the main issues regarding these high order concepts. So I’ll start you off with a quote from each one. This is Tara, again an 18 year old participant and she’d done a group only programme, and this was her talking about someone who asked Tara, and she was telling about mindfulness.
She said, she was like, why? But why? Why would you do this? And I said, because it helps. I don’t know. I don’t really, because I know what it is but I can’t describe it to someone and I know why I do it but I can’t… It’s difficult to kind of tell people. Like when they told us I didn’t really understand but through doing it I started to understand it from my point of view and I think that’s the only way anyone’s ever going to understand.
So, a bit like for the start, there’s this kind of I’m not quite sure. I’m not quite sure why I’m doing it, but Tara kind of moved on a little bit from that and then said, but I kind of gave it a go and something happened, but I’m still not quite sure how to describe that. So this whole idea of there being a spectrum of uncertainty across both patients and practitioners, some stayed very much at a point of being completely unconvinced and completely disengaged from the idea of mindfulness to being kind of wholeheartedly convinced.
So, Maria, in particular, she was the outlier in terms of age. She was 50. She became almost evangelical about mindfulness, and that’s why she wanted to be part of the study to tell people how amazing it was, but then I had, kind of, Sab at the other end who’s kind of going, yeah, I don’t really. Yeah, she said very little, rather than not I’m not sure really. It’s really hard to explain. Yeah, I don’t really understand it.
So in terms of what really came out of this theme thing, what they said about what’s the point, but there was also a sense of being unsure whether they were able, like perhaps I’m just not the right sort of person for this sort of thing. Perhaps I’m just not cut out for it. Perhaps other people could do something different about me and practitioners, similarly were kind of like maybe people can’t do this. Maybe we’re asking too much of them.
Maybe, you know, they’re too immature or maybe they’re too emotionally dis-regulated. So a lot of kind of uncertainty that any of this could really make a difference and that there were an awful lot of blocks for them. There were an awful lot of things that made it really difficult for them to keep going with mindfulness, because there was a sense for both practitioners and patients that mindfulness it’s a really tricky thing to do, even if you’re really up for it, even if you really give time to it.
It remains a really tricky thing to do and everybody seems to have difficulties you have to overcome in order to keep going, and one of the things that I was really aware of when I was hearing participants speak about this and this kind of idea was it’s just so hard. I’m not sure what I’m doing here. I’m not sure whether it’s even necessary to get a good outcome, but there was quite a sense of should, and I’m not good enough and almost kind of inciting shame in them that like I’m being told that this is going to be good for me and yet I can’t do it.
So what does that mean? Does that mean I’m not good enough to do so? Let’s move on. So shifting perspectives in a difficult situation. So this was from Philippa again, and she’s saying because life is, as I’ve said many times, life is hectic and sometimes you can’t get away from it, but we can use it with just sitting there and just blocking everything else a bit and just focussing on just one thing. It’s wonderful, really, just knowing that it’s not exactly an escape.
It’s just more of a pause button on life for a bit, and this kind of hybrid concept is shifting perspectives, and really sort of started to link in with some of those mechanisms of mindfulness that the research was talking about, because what people were doing was a very specific thing. What people weren’t doing was very specific. So what they described doing was using mindfulness to really focus their attention somewhere else, so they did not… It’s one of the things that we say when we’re teaching mindfulness is you’re mindful of the present moment.
Actually, people weren’t mindful of the present moment. What they did was they said the present moment is really hard. I’m going to focus really hard on something else for a bit until it feels a bit better. So they chose to use mindfulness in a way that really focused their attention on something else for a bit, and this really kind of linked in with some of the mechanisms of change around mindfulness which is called de-centring. So the idea that it we’re completely centred on our thoughts or emotions that were completely, we’re kind of aware of that moment then we will react to that.
We will respond to that, but if we can decentralise ourselves and kind of put our thoughts and emotions over there for a bit, that actually our reactivity to those goes down. So that seemed to be what a lot of the patients were describing, and the reason it ended up saying in difficult situations was because that’s when they were using it. They weren’t going out and going, I’m going to be mindful of everything. I’m going to start living a mindful life.
They were like, oh, I’m really struggling right now. Perhaps I could use some mindfulness in this situation. So it was very focussed on like, almost first-aid a first aid and practitioners were very focussed on a behavioural change, which actually makes a lot of sense because DBT is a behavioural therapy and your targets for DBT are all behaviourally defined. So you’re working on reducing life threatening behaviours, reducing therapies, interfering behaviours, reducing quality of life interfering behaviours. So all of your outcomes are behaviourally defined.
So it kind of makes sense that practitioners would then have the sort of thought that what we want is for mindfulness to change how these people behave. So practitioners were very focussed on the idea of what they call DBT, kind of an urge surfing. So rather than seeing urge as a signal to act. That an urge is an urge and an action is an action and you can stay with an urge without going onto action. So that was quite a lot of what they would talk about, that they would hope that they would see a situation differently and therefore not act on it. That they would be able to tolerate that emotion and therefore act on it.
And that kind of tidied up quite well with where the mechanisms of change, which is permanent attachment to experience. So again, not being so linked into your experience that you then go on to react to it, and there’s also a mechanism of change in mindfulness, which is non-reactivity. So it’s a bit like a Buddhist monk sitting there for hours on end and the fly comes in on their face and they’re not to kind of wipe it away, you’re non-reactive to your experience.
So [inaudible 00:25:59] concept was approaching awareness with caution. So Maria kind of spoke about this and she was probably the least cautious of all of the patients in terms of approaching awareness and she found that it made a difference to how she dealt with her feelings. So you [inaudible 00:26:25] and notice what you’re feeling. If it makes you upset that’s okay because there’s no right or wrong in mindfulness, but it’s just sitting with it.
Whereas before you would not. You would avoid it and push and push it away, but the thing is if you keep pushing away, it comes back to bite you on the bum. Sometimes it’s uncomfortable to do that, but the more you practice just sitting with that emotion and that memory, that’s maybe traumatised you as a child or an adult, just sitting with it, not for a long time, but being mindfully aware of what you’re feeling and what your feelings are and what your thoughts are, what your emotions are.
So Maria kind of spoke about doing, one of the things that practitioners were hopeful that people do, which is just be able to sit with how they’re feeling. However, there was a great deal of caution around this. So practitioners felt that the patients would be too fragile to manage this. They spoke about being quite fearful that a lot of their patients had been traumatised in some way or were highly emotionally dysregulated, and they were really worried that by putting them in a situation where maybe they were asking them to be aware of their thoughts or their feelings or their body, that that would trigger an adverse reaction.
So they were worried that people might dissociate. They were worried that people might get very, very distressed and equally patients didn’t speak about that very much. They very much spoke about I’ll keep mindfulness here. You know, I’ll keep mindfulness with focussed attention. They weren’t pushing. Maria was probably one of two of them who kind of pushed it that bit further to being like, oh, I’m going to sit I’m going to think about, you know, I’m going to be aware of this rather than avoiding it.So this got me kind of thinking about a couple of things one is, well, perhaps especially in DBT, which is a very behavioural focussed therapy, and we saw shifting perspectives in difficult situations that it was being effective. People were saying that this is effective for me to change my behaviour. Perhaps that’s the work of mindfulness done and maybe trying to do more than that and trying to enter into emotional experiencing is kind of more than what needs to be done in that situation.
However, going back to the kind of research there’s a lot of research for symptoms of kind of borderline personality disorder, emotional unstable personality disorder that actually emotional avoidance is kind of part of the problem, and that by continually avoiding that increases some of the other difficulties. So talking about being emotion phobic, emotion resistant, things like that being a particular problem, and one of the things that came up with this was kind of the fear around it, so there was fear on both sides and therefore a bit of a standing back.
So practitioners talk specifically about avoiding particular mindfulness exercises because it might cause distress, which then perhaps reinforce a little bit to the patience that this was going to be too much for them and it was kind of a tricky thing to do. A lot of research is now starting to take place in terms of that kind of trauma, mindfulness. Should we be using mindfulness for people who are possibly traumatised and that maybe this benign thing of mindfulness that we’re asking everybody today maybe isn’t as benign as people were expecting it to be?
And there may be some adverse effects in terms of increased stress and increased kind of negative emotions. So there is now some people out there writing about trauma sensitive mindfulness. Mindfulness that takes into account that for some people when they are asked to be mindful they do have an adverse reaction because of previous difficulties.
So overall the research, kind of, got me thinking about that need for trauma sensitive mindfulness and what people are fearing in terms of what mindfulness might or might not do. Also kind of the need for self-compassion alongside mindfulness. So in the spectrum of uncertainty that kind of, the shame trigger of I’m not good enough to do this and I’m doing it wrong. The way I’m thinking is wrong. I shouldn’t be having these experiences. All of those sorts of things becoming roadblocks to being able to be mindful. So kind of thinking about, well, if we can be more compassionate about the individual being mindful rather than just seeing mindfulness as X, Y and Z of what you do then that could be helpful as well.
So implications for practice. So understanding mindfulness is multifaceted and its techniques and outcomes. So kind of knowing what you’re doing and why for what individual. So does this person need better focus attention so they can choose not to think about something that’s causing them distress or do they need greater awareness of their emotions because they need to be able to feel more comfortable with the idea of feeling sad or feeling shunned or whatever, but being a bit more targeted around, well, what are we trying to teach them and why?
What is the intended outcome so that patients can be clearer, but also practitioners can be clearer about exactly why we do this? Knowing when the job of DBT is done and when extra benefits from mindfulness practice of outside of the remit of DBT. Practitioners being to consider their own personal influence on the teaching of mindfulness. So being aware of some of those. Maybe the fears they’ve got about types of mindfulness that they do. About their confidence in being able to talk about mindfulness as a treatment and accept the addition of self-compassion, ability and trauma sensitive mindfulness practice might be important to the development of mindfulness within DBT.
And lastly, limitations, so like I said, [inaudible 00:34:02] does acknowledge that the researcher has a personal influence on the findings, and in order to try and make that more robust you’re kind of thinking about how do I use [inaudible 00:34:18] ? How do I use other people to kind of say, well, what about this? How about that? Those sorts of things. You through this and the supervision I’ve had at University I’ve been able to kind of try and not be so focussed on just what might be apparent to me.
But being able to see other things in the research as well. The compromises that I had to make some things did mean that the participants became more and more heterogeneous. So therefore, in terms of contextualising it that becomes more difficult because you’re not necessarily talking about a kind of completely homogeneous group and as I said at the start always having to take my PA findings in context and using that to then eliminate or resonate problematise other kind of findings, which is kind of the next stage of my research.
