S8E4: Developing Tailored Mental Health support for people with MS with Eva Fragkiadaki

Eva (00:00)

we took the findings from previous observational, longitudinal study that I did with people living with MS and had engaged in various psychological interventions. And we also took the conclusions from the literature because there’s been so much work on how cognitive behavioural therapy, mindfulness, acceptance and commitment therapy and other psychological interventions work for people with MS. So we kind of focused on these interventions and techniques that have been most efficient as recorded in the literature.

 

Rachel Johnson (01:12)

Welcome to the latest episode of the Living Well With MS podcast. In this episode, I’m delighted to welcome Dr. Fragiadaki. Welcome, Eva, to the podcast. Eva is a counselling psychologist and has been a researcher, a trainer and a practitioner for 15 years. She has developed strong interest in the development of personalised psychosocial interventions that meet the real needs and preferences of the community, applying ideographic longitudinal methodologies. Eva’s research since 2016 has focused on developing and evaluating psychological interventions for people affected by multiple sclerosis. Eva actively engages the community of disabled people and people with chronic conditions in the design, conduct and dissemination of her studies. Eva is a senior lecturer at the University of the West of England in the UK and Programme Leader of the Professional Doctorate in Counselling Psychology. So hi, Eva, and welcome. Delighted have you It’s great to see you. So first of all, we’ll just get straight into it. Could you start perhaps by introducing yourself and your work and how your work connects with the multiple sclerosis community?

 

Eva (02:06)

Thank you so much for having me. Thank you.

 

Yeah, of course. So as you said, my name is Eva Fragiadaki. I am a trained counseling psychologist and a creative counseling psychologist since 2009 now. I have been working as a clinician, as a therapist for many years, as well as a researcher, a trainer, and an academic for most of that time as well. 

My research has always been around psychotherapy processes and therapist development. But since I started my postdoc in 2016, as you say, I have really focused on the development and the evaluation of psychological interventions for people with multiple sclerosis. And my interest initially started from my engagement with the literature. So was trying to understand how psychotherapy works for chronic conditions. And I came across, you know, back in 2016, but also now it’s still an ongoing discussion about this complicated relationship between depression and multiple sclerosis. So my thoughts and my sort of conceptualization was how can then psychotherapy and counseling health in the experience and in the management of MS symptoms. So I started with all of my research so far has been what we call a longitudinal observational as well as evaluation studies. So I meet with people living with MS multiple times throughout my studies and I discuss with them their experience of the psychological interventions as well as their experience and management of MS and how it might, if at all, be impacted by the actual intervention they have engaged in. So that has led to wonderful conclusions that we can discuss today and also the next steps and where we think research should go to.

I’m very happy to see it growing and I’m very happy and eager to learn more.

 

Rachel Johnson (04:25)

So you’ve just completed a study. Could you explain a little bit more about what that study was? I believe it was around group therapy. If you could explain a bit more about that, that would be great.

 

Eva (04:36)

Yes, yes.

So what we did, we took the findings from previous observational, longitudinal study that I did with people living with MS and had engaged in various psychological interventions. And we also took the conclusions from the literature because there’s been so much work on how cognitive behavioural therapy, mindfulness, acceptance and commitment therapy and other psychological interventions work for people with MS. So we kind of focused on these interventions and techniques that have been most efficient as recorded in the literature.

And then we spoke to practitioners that work with people with MS. And then finally, we co-constructed this online group psychological interventions we called MyMSAlly with a group of people living with MS. We went through the schedule together and we sort of finalized with them how the intervention should look like. And then we did a very small scale feasibility and pilot study without a control group. So it was just these people that participated in this intervention and we followed the journey before and after again. So we spoke to them and they did complete questionnaires before and after the intervention. And for this study, we had five women. They all identified as women and they all had at the time relapsing remitting MS. So our main findings in a nutshell was that it’s really difficult to measure change, just focusing on depression and anxiety scales. And we did find that we need to incorporate in our work and how we think about interventions, concepts like self-concept, identity, emotional, as well as interpersonal processes and how those change. We found that for our participants, initially a mess was really kept in the background.

And through the group intervention, they managed to integrate it in their lives more. And as they did that, they managed to be more open and communicate their MS more open to the people around them. We found that our participants started from a kind of a judgmental perspective towards their MS. But as they shared and as they relate to the other members of the group, they had a more of a compassionate attitude towards their MS in their interviews when we discussed it with them. We also found that disability matters, that people with visible or invisible impairments, they had a different experience of the intervention, a different experience of the group, and obviously they had a different experience of their MS as an outcome of that. And we sort of concluded that change is a very individual process as MS. It’s not the same for every person that has MS. So we’re really trying to figure out ways that we can make interventions even more personalised and kind of do justice to this diversity and the needs and preferences of people that engage in mental health support from this community.

So these are kind of the main bits from our work.

 

Rachel Johnson (07:40)

And you mentioned that most of all of the participants in this study were women. Is there any other research that you know about this, how men experience MS obviously as a minority in the multiple sclerosis community? Do you think that there are any differences perhaps in how they would process their emotions and their experiences?

 

Eva (07:46)

Yeah, yeah, of course. So this is very interesting question because if you read all of the studies, especially with regards to mental health support for people with MS, the majority of the sample is most of the time women. And that also corresponds to the prevalence of MS.

 So if you look at the percentages and how many people have MS and how many of these people are women or men, there are more women than men that have this diagnosis. So there is a gender inequality in MS and that sort gender differences, discrepancies, kind of discrepancy, but sort of gender inequality.

It is reflected on research projects as well. I’m not aware at the time of any research that differentiated the findings according to the gender of the participants. But having worked with lots of people from the community living with MS and many of them in those groups are men. When we designed our studies, when we sort of co-created with them the proposals, the dissemination material, yeah there is a lot of need and eagerness to participate from both genders really.

But also I think it’s important coming from this question to focus our work and our research very proactively targeting diverse groups because inclusivity is very, important. So we need to really advocate for that everywhere, including research.

 

Rachel Johnson (09:37)

Yeah, absolutely. Inclusion of different groups in research is obviously so important and for people to feel like they’re represented. So talking more broadly about mental health support that can help people with MS live well, what are some of the different types of interventions that you’ve found out about through the course of your research from peer support, psychological interventions, and what would you say particularly are the significance of the group in those interventions?

 

Eva (10:06)

Yeah. So there is a wealth of research, mostly quantitative, which means that people look at metrics. So they take questionnaires and they compare how people did according to those questionnaires. And this kind of research has really shown that psychological interventions are quite promising. And mainly in the literature, we have seen cognitive behavioural therapy, mindfulness interventions. And we are now doing a systematic literature review of trying to see how researchers have tried to personalize these interventions and make it particularly develop them, particularly for people with MS, which is very exciting. We look forward to see how that goes.

Parallel to that kind of research, there is also more qualitative research that we actually go and ask people with MS their experience of their interventions. And the findings from that are very, very interesting because they’re talking about how traditional psychological interventions can be quite burdensome, cognitively demanding, and physically demanding sometimes inappropriate for MS symptoms. And what these research tells us, which is not much, but there are a couple of very, very significant papers that conclude that people with MS really value more flexible interventions, really value interventions that fit and match their needs and preferences. And they value online interventions because they are more accessible, you know, from the comfort of people’s houses.

And at the same time, group interventions with a facilitator seem to be preferable. Hence, we developed and tried MyMSAlly as an online group intervention, which was integrative. So was sort of two bits and bobs from each therapeutic approach that we saw in the literature and in our work that worked better.

With regards to groups now, and we are hopefully waiting for the publication of that paper, we found that these processes of relating and sharing were much more prominent and efficient than the actual techniques. So what we found is that being in a group with people, with women in this case,

But I don’t know if gender is a factor because we didn’t have many in our sample. But the fact that these women met together and they shared their MS, their challenges, with lots of challenges inside the group because they had different MS journeys, each one of them had different symptoms. But we found that kind of process of sharing and relating was in a kind of a nurturing environment, helped them feel quite empowered, helped them feel reassured. And these are quite significant outcomes that you can measure them with a questionnaire, but they’re very, significant outcomes that then help them develop this compassionate attitude and discuss their MS more openly in their social networks. There was anxiety, as I’m sure that in Overcoming MS because you base your work with your community within groups. There is anxiety in joining a group with other people with MS. But we’ve also found that our participants manage to and manage this anxiety in various ways. So for example, one of them took the role of the kind of the helper and the supporter inside that group and that really helped her engage into it. So there are various ways that this can happen and we have this kind of conclusions in that publication. Hopefully we’ll be out soon. We’ll be able to share more widely.

 

Rachel Johnson (13:51)

And it’s interesting what you’re saying about how the women found more comfort and felt more comfortable when they thought of their role, they reconsidered their role as that of a peer supporter rather than a patient. And that’s very relevant to our work at Overcoming MS because we have our, what we call our circles, our peer support groups that are based on location or you know shared interests. How do you think that your research could apply to a service like ours?

 

Eva (14:25)

Yeah, no, for sure. And it really aligns to what we found. The facilitator in our study was an accredited practitioner psychologist, very knowledgeable. We went through the intervention schedule together. So it was very well established professionally in terms of the person that facilitated it. and their support as a facilitator, more as a person rather than as a clinician, seem to be very, very important. So they all commented on the warmth and the safety that the facilitator managed to nurture in that group. So these are qualities that peer support groups can can really foster in those environments and can really develop them further. And we found that that kind of environment and that kind of feelings inside the group really facilitated sharing and facilitating kind of a more authentic, narrating more authentic accounts of people with MS because we had what we call more narrative techniques in MyMSAlly which means that members were encouraged to share their MS stories as a kind of exploring their identity as people with MS, which was very impactful for our participants and definitely something that can be very easily applied in peer support groups, in your community and in your circles. Yeah, and as I said, for our participants, process was more important than content. And this kind of sharing within a group of people with MS in the kind of a safe environment was very, very impactful for them. yeah, definitely lots of things aligned between what we concluded and what overcoming a mess has to offer.

 

Rachel Johnson (16:22)

Thank you. Other listeners might be curious to know, how did this intervention differ to perhaps some of the more well known group based psychological interventions like perhaps CBT or group counseling? In what ways would you say that this is a more unique intention?

 

Eva (16:31)

That’s a very good question. this, MSR is a new therapeutic approach. It doesn’t offer something new, but it align to what we call integrative approach in psychotherapy and counseling. So we did a kind of an eclectic integrative model of taking the techniques from various already established therapeutic modalities like CBT like mindfulness, like acceptance and commitment therapy, narrative therapy. And we structured our intervention as an eclectic integrative model within the context of what has been found that’s most helpful for people with MS. So it’s not something new. It’s not a new therapeutic modality that you haven’t seen before, but it’s novel in the sense that it’s an integrative model.

And the themes do come from what people with MS have said in research that they found most helpful. And the techniques to address these themes, they draw from quite established therapeutic modalities like CBT and mindfulness and narrative therapy.

 

Overcoming MS (17:46)

Living Well with MS is listener supported. If you would like to help the charity create more episodes and other resources to help people live well with MS, please visit donate.overcomingms.org to make a donation. Or check out overcomingms.org forward slash fundraise to find out more ways you can raise money for overcoming MS.

 

Rachel Johnson (18:10)

Going back to something you said before that was really interesting, you mentioned about visible versus invisible disabilities. Could you go into a bit more detail about what you learned about that?

 

Eva (18:18)

So in our group, we had members that had visible impairments and had members that they had MS symptoms that were invisible. Nobody could see them if they didn’t know that they had MS. And the women in our group with the kind of more invisible symptoms. They were the ones that tended to hide their MS more and they had more of a kind of an isolated experience of their MS because somehow it was more difficult to share it with other people and share their needs in their everyday lives. And they also tended to feel more anxiety in the interactions in the group, which was also very interesting.

Now women with more visible impairments, they tended in the beginning to be more judgmental of their symptoms, their bodies and of their everyday life with MS, especially if they needed care. However, the more they managed to share those very, very difficult thoughts within the group, the more they managed to sort of feel more empowered and more reassured within the group, which really helped them develop this more compassionate attitude toward their own MS. But they also inspired the rest of the group to kind of look at their MS with a more of a kind of a compassionate eye and integrate it more in their own lives and in their own identity. And we had the privilege to watch that happen and talk to them about these kind of experiences in this kind of design. And that paper has been published. And we, in that paper, we sort of talk about each one of them individually and how their experience unfolded within time. So that was quite significant and we are very privileged to have that kind of information.

 

Rachel Johnson (20:15)

I think self-compassion in chronic illness is something that’s so important. Could you perhaps articulate some of the reasons why self-compassion in chronic illness is so important and so beneficial?

 

Eva (20:27)

Yeah, definitely. Definitely it is an area possibly of further research because it hasn’t really been researched. But what has been researched is what we call acceptance and adjustment to chronic illness, to chronic conditions, which is even that it is a term that it’s quite challenged because it’s not really about adapting and adjusting, but it’s about integrating it into the person’s life and engaging through a more kind of honest and authentic communication when they share their MS, when they think about themselves as a person with MS. So self-compassion, as we talk about it in my mind, so one of our findings is that sharing and relating really brought forward more self-care for our participants. So I think that’s a very important outcome of really valuing, understanding and accepting people’s needs and becoming able to ask for what they need in their everyday lives. Because for example, our participants were women with quite active lives, quite a lot of ambition and interest in what they do and in what they engage in. And it was lovely to see how that grew further and how that developed further within these interactions in the group.

 

And I guess becoming more compassionate gives more, as I say, authenticity and engaging into these activities and lives, incorporating their MS in it rather than trying to keep it separate.

 

Rachel Johnson (22:10)

Actually, as you were talking, I was wondering, as a researcher myself, whether there are any links between lifestyle change and self compassion. And if you have that increased level of compassion towards yourself.

 

Eva (22:15)

Yeah, yeah, nothing, nothing on the top of my head as a kind of evidence we have in the literature, even though I’m sure there’s there’s lots there about behavioural changes and compassion, for example, in health psychology literature, I’m sure there are theories there. But what we found from this kind of small scale study that we did was sharing did promote self care, at least promoted the discussion of self-care, which had behavioral sort of changes involved. So that was very important.

 

Rachel Johnson (22:54)

Talking about kind of future ideas and future research, what are your aspirations for the future of care for people with MS in terms of kind of mental health interventions?

 

Eva (23:04)

I think we need to start thinking about mental health support for MS in more holistic way. So it’s really hard to isolate depressive symptoms from, for example, disease progress, context, social factors, physical factors. So it’s really hard.

And unfortunately, you know, research methodology, as you know, is so specific that many times we need to leave factors out. actually, especially for MS, they’re very important. So I, we’re now putting something together to apply for further funding to understand how more personalized, systematic intervention programs can be applied for people with MS. And for example, in particular, there is a modality which has been very newly developed in the US called process based therapy. And essentially what they do, they do a very thorough needs and preferences and target behaviors assessment with the person that includes everything. So they sort of move away from labels such as depression and anxiety and really look at the person within their context and then based on these needs and preferences that’s how they develop their interventions which is very exciting and in our experience and in our work with people with MS over the last 10 years almost I find it’s quite relevant and it can be very helpful. So hopefully we’ll have the space and we’ll have the resources to try it in another small study and see how we can refine it and adjust it to people with MS here in the UK. And then hopefully do sort of larger scale studies and see how we can incorporate it in mental health care if we find that it is something that is applicable and it is efficient. I’m also working a lot with a community of people with chronic conditions and disabled people. And as a trainer myself, I’m trying to build more resources and more research on how we can make mental health care more accessible and more relevant to disabled people and people with chronic conditions. There is a lot of structural and interpersonal barriers, especially within the NHS, but also beyond sometimes. I mean, there are models like Overcoming MS that this kind of community based intervention seem to work better and seem to be more open and more accessible, which is fantastic. So we need to learn from these models and provide more training to professionals and provide more space for all of these voices to be heard and learn from them as we build those services. So hopefully I will manage to contribute to that as well.

 

Rachel Johnson (25:57)

Thank you. I think we’ve come to the end of our conversation, but thank you so much for your time ever. It’s been a real pleasure to meet you and to hear more about your research. And yeah, we’ll watch this space and look forward to reading the papers as they’re

 

Eva (26:10)

Hopefully we’ll have more opportunities to have more discussions and people can follow my work through my profile and just keep themselves updated. But hopefully we’ll have the opportunity to do more things with Overcoming MS. So yeah, definitely we’ll stay in touch. Thank you so much for having me today.

 

Rachel Johnson (26:37)

No problem. Thanks ever so much. Thank you.

 

Eva (26:39)

Okay.