Beyond the Cancer Diagnosis: Dialogue with Laura Charlesworth, Hosted by Adrian Pogacian

In the new episode of ‘Beyond the Cancer Diagnosis’, Adrian Pogacian addresses a sensitive subject: Enabling coping in people living with cancer and severe mental illness, with Dr. Laura Charlesworth, Professional Officer at the Society and College of Radiographers.

Adrian Pogacian, MS Psychology, clinical psychologist with executive education in Psycho-oncology, holding a degree in Global Health Diplomacy from Geneva Graduate Institute. Currently, researcher and associate lecturer with focus on Impact of Cancer Diagnosis on Couples and Families, Communication in Cancer Care and Posttraumatic Growth. His expertise is on Coping with Cancer and managing Fear of Recurrence.

Additionally, Founder of INCKA Psycho-oncology Center, Host of Beyond the Cancer Diagnosis Interview Series as well as Writer and Host Content in Psycho-oncology at OncoDaily.com, co-author of the first Romanian Multimodal Care Guideline in Pediatric Onco-hematology, active contributor to the International Psycho-oncology Society, presently IPOS Fear of Cancer Recurrence SIG member and IPOS Early Career Professionals in Psycho-Oncology Committee founder member.

Laura Charlesworth is a Senior Lecturer and Course Leader for Radiotherapy and Oncology at Sheffield Hallam University, where she teaches across the DipHE, BSc, and Post Graduate Diploma programmes. With a background as a Therapeutic Radiographer, Laura has a strong focus on student development in both academic and clinical settings. Her research interests include health improvement in radiotherapy, image-guided radiotherapy, and mental health in cancer care.

Laura is a Fellow of the Higher Education Academy and a registered Practice Educator with the Society and College of Radiographers. She has also been involved in significant research, including a Winston Churchill Fellowship on health improvement in radiotherapy practice.Her areas of expertise include leadership in healthcare, interprofessional education, and recruitment to the radiotherapy profession. Laura is passionate about enhancing both student learning and patient care within the field.

Adrian Pogacian: Hello everyone, welcome to a new edition of Beyond the Cancer Diagnosis interview series. Today my guest is Dr. Laura Charlesworth. Laura, welcome, nice to have you with us, thank you for accepting our invitation.

Laura Charlesworth: Thank you, Adrian.

Adrian Pogacian: And today’s subject is about coping in cancer care, coping as a useful tool to support people with cancer. Laura, I have to admit that coping in cancer care is one of my, let’s say, favorite subjects within psycho-oncology and I would like to ask you for the beginning to define in your own words what you understand on coping with cancer. We all know the official definitions, we know a lot of different interpretations, but from your experience how you can define this?

Laura Charlesworth: So if I can start by saying that I actually never set out to look at coping specifically. So my research was very open about the perception of needs of people who had severe mental illness and, or people who have severe mental illness and a cancer diagnosis. But what I discovered through interviewing and speaking with this population is that they talked about many factors that were all interconnected by coping.

And outside of the definitions, you know, Lazarus and Folkman, et cetera, around what we really mean by coping in, you know, the ability to deal with change and adapt. What this actually looked like for the people who I spoke with in my research is their ability to manage their mental illness without deterioration of the mental illness.

So what they really were talking about in terms of deterioration is maladaptive coping mechanisms around the mental illness. So that included things like reaching crisis point, turning to substance misuse, self-harm and suicidal ideation.
So that is the reference point really when I’m talking about coping in this situation is these individuals’ ability to avoid ending in that crisis point with a mental illness.

Adrian Pogacian: You mentioned maladaptive coping mechanism. In the case of severe mental illness, the patients are doing, let’s say, instinctively because in the case of the majority of cancer patients, they are doing in a way to feel better. But in the case you mentioned, it’s instinctively done this maladaptive.

Laura Charlesworth: Not necessarily. That’s just the point to which they turn because for many of these people, they’ve experienced that before. And so when their mood deteriorates, they feel like they’re not receiving the help that they need.
Their stress levels or anxiety levels increase and their severe mental illness deteriorates. The strategies that they turn to are those maladaptive coping mechanisms. I wouldn’t say they’re necessarily instinctive, but they’re possibly familiar.

Adrian Pogacian: Okay. Because in the other case, they are trying to make it better, but they are doing worse. So this was the questions about.
You mentioned about severe mental illness. Before we go further, I would like briefly to mention or to explain what exactly means severe mental illness or SMI for our audience, just briefly in large terms.

Laura Charlesworth: So it’s actually really complicated to give you a single definition. And in my study, there’s a whole section really dedicated to trying to explain that. And there’s been evolution of the definition of severe mental illness over many decades.

So in its simplicity, there are two different ways really of describing it. One is through classification of disease types. So we might hear talk about things like schizophrenia, bipolar disorder.
We might categorize by condition or disease type. Or we could talk about that in terms of how it actually impacts and affects on a person. And that is actually what I’ve selected to do in my research is to say that severe mental illness is actually an illness that affects somebody in the long term.

So for a duration of two or more years, it also is something that affects their day to day life. And they are seeking support from mental health services for their mental illness. So I chose not to go down the route of only including specific diagnoses.
And that’s for multiple reasons that again, gets complicated, but not everybody with an SMI has a natural definition. So I think it would have excluded a group of the population had I have chosen to go down the route of saying only people with a definition of schizophrenia may be included in the study.

Adrian Pogacian: And you are talking now as a research from your study, working in, let’s say, hospital or in private research?

Laura Charlesworth: Yeah, so in private research. So through the point of my research, I was employed by multiple different organizations, but mostly academic institutions. However, my recruitment strategy was to have open recruitment for anybody to express an interest that they have seen the study, but I was also supported by having nine public health organizations on board to help me to identify potential participants.

Adrian Pogacian: Because I can imagine it’s very difficult to make a study because in Romania was also very difficult for me to make a research or a study on coping mechanism in my county because in Romania, as I always said, it is a gap of two years between the first symptom of cancer and the diagnosis. So it is very difficult to make a research because after two years, when you find out that you have cancer from two years, you don’t have time to complete questionnaires, to complete tests and so on. So it was very difficult for me also.

And I imagine for you as well, especially with people with other illness than cancer. And now we come to our subject. How is a patient that experience severe mental illness, let’s say, reaction or response to a cancer diagnosis or to a cancer treatment?
What is different from a not normal, but for the majority of cancer patients?

Laura Charlesworth: Yeah, so I think it’s a really interesting question. And there’s actually quite a lot that’s different when you when you really take the time to explore and speak to people who’ve been through this. And I think the first thing is that this starts way before their cancer diagnosis.

And many people who’ve got severe mental illness are very familiar utilising health care often, and are known to their general practitioner, their family doctor, and also some mental health services, you know, depending on the sort of structure regionally and geographically. So this starts where many of these individuals that I spoke with had their physical symptoms overlooked. And that phenomenon is known as diagnostic overshadowing.

And that’s because they’re complex individuals with complex health circumstances. So they’ll present themselves to their health professional with a physical symptom. And in many cases, that’s overlooked, or it’s attributed to their mental illness.

So if I can give you one example from, from my research is, I had a participant who has had, who has multiple severe mental illness diagnoses, one of which relates to a very complex eating disorder that she’d had for many years, I think it was about 35 to 40 years that this individual had managed this particular eating disorder. And all of a sudden, well, over a period of time, she developed a very swollen abdomen, and had sought help on multiple occasions. And often was told, this is, this is a problem due to your malnutrition, because you’re not, you’re not getting enough nutrition, you’re not eating and drinking enough.

And she said, but I’ve lived with this for many years. And this has never happened before. And I’m very uncomfortable.
And I feel very different. And I’m in a lot of pain. And that is unusual for me.

And what happened to that individual is actually she, she then was sectioned under the Mental Health Act, and admitted to a hospital setting, where she was, had a feeding tube and was fed through, you know, through that mechanism. And about four months after that, she actually went into accident and emergency department, because the pain was so extensive. And upon having a CT scan, discovered that she’d got a watermelon sized tumour in her ovary.

So her symptoms were just put down to the fact that she’d got this mental illness, and that the manifestation of what was happening was this was a symptom of that. And that wasn’t the only case that I heard of this diagnostic overshadowing actually happened across multiple cases of my study. So it starts right there.

And then I find that I found that these individuals, actually, upon the point of diagnosis, whilst their actual experience of diagnosis was very important to them. And quite often, the news was delivered in poor in a poor way. So on a ward on their own without family members present, unaware that they were going to a medical setting to receive this life changing news, you know, a short 10 minute appointment, tell them they’ve got cancer, and then just given an awful lot of information that they were unable to process, that was very difficult for them.

But actually, not very long after that diagnosis, there was a moment of thinking, actually, I can be quite positive about this. And I think that’s quite unique for this population. Now, again, I don’t want to generalise this to everybody with SMI and cancer.
But I think this is about all of my participants had lived with their SMI for a long time, I’m talking 20 plus years. And I think there was a visualisation of the cancer being a short term transient illness that would come and go, I’ve got this diagnosis, I’ll have treatment, and it will go. Whereas their mental illness, they’re aware that they’re living with this for life, you know, their mental illness will never be cured, it will be managed.

And so there was this different approach of how do I actually tackle the cancer that I’ve got and seeing it as a, okay, I can do this, I can, this will come and it will go. And it’s an area of focus. And that was sort of happened initially for some for several participants, actually.

They also sort of go into the health system for their cancer care, using the strategies that they’ve got already. So many of them had their own strategies for resilience, they were self advocating for their care, they were imagining sort of a new future, the cancer diagnosis was a point of thinking, actually, do I want to live in this place after my treatment? Do I want to have these people in my life, it was kind of a moment of reimagining a future, a future me.

And, but what happens is they go into the system with all of these strategies for resilience. And because of the behaviours and the experience, sadly, that they encountered in the healthcare system, those strategies for resilience were, were kind of broken down, they were unable to use because they weren’t being listened to, they didn’t feel that the mental health was taken into consideration. They didn’t feel that they got listened to and treated as a whole person.

So that’s sort of what’s happening whilst they’re having their treatment. I think there’s a, sorry, Adrian, this is very long answer to this question, but I’m taking you sort of through the through the journey. Once they then start having treatments, that’s also really fascinating, because many of my participants did not describe having full set of information, the, an appraisal of treatment options presented to them, many of them were just told you should have this treatment, this is the best treatment for you, without actually explaining lots of the long term effects of those treatments or other treatment options. So I think shared decision making was very much reduced.

And particularly here in the England and in the UK health systems, we’re really trying to drive towards that as being a really important factor of care.

So that shared decision making, personalised care, taking into consideration everything about that person, actually, for this group of individuals, they really described the opposite of that, you know, decisions were sort of made on their behalf, sometimes without them even really knowing and understanding that that was happening. So, so that’s kind of the treatment side of things. And then the living with and beyond cancer is the point at which their treatment is completed, and they’re no longer having kind of ongoing ready access to their oncology healthcare system, they really struggled.

And that was because they all of a sudden, there’s a reality that the cancer actually isn’t a transient disease, they’re living with the effects of the cancer itself, or the treatment, this fear of occurrence, there’s all of those sort of aspects that we know about the sort of survivorship phase for people with this disease, then suddenly become a reality. And that’s again, because they don’t have the support in place, their ability to cope is very much diminished. And along that journey, I found from the people that I spoke with that that specialised support that these people need was unavailable.

So our systems are very separate. So healthcare for your cancer is over here, and healthcare for your mental health is over here, and the two don’t come together. And the mental health system so complex that they didn’t really accommodate the kind of cancer and the impact of the cancer.

In many cases, the mental health professionals didn’t even know that the individuals had cancer unless they shared it with them. And in the cancer setting, the professionals were unable, nervous, uncomfortable, didn’t have time didn’t have the specialist expertise to support the specialist mental health needs that this group has. And we have, you know, big charities here in England, Macmillan, you know, who provide a really great standard of care.

But what my participants were finding is that because they’re not they’re not experiencing anxiety and depression, that’s occurred because they’ve got cancer, they’ve got this pre existing complex need, that the specialists were unable to provide that support, because really, they need, you know, that very, very highly specialist support, which wasn’t available to them. So that’s in a that’s a long description, really, of what it’s actually like for this group of people. I think there are some some unique aspects of circumstances for this group.

Adrian Pogacian: I would like to go a little bit back to the moment of diagnosis. And I would like to ask you, maybe seems my questions, let’s say, childish, but I have to ask. Normally, when a person which became a cancer patient receive a cancer diagnosis, automatically, the defence mechanism appears.

And only after we can talk about coping mechanism. In the case of severe mental illness patients, could we talk about defence mechanism? Or there are signs that they applied, like, I don’t know, fear or hope, or did you notice this?
Coping this defence mechanism before coping?

Laura Charlesworth: Not really. And, and I think that was surprising to me, actually, I, I think, how can I articulate this? So there was, there was more, the negativity around the cancer diagnosis wasn’t so much around, why is this happening to me?

You know, the kind of the shock, anger, they didn’t really describe that. They described anger and frustration in relation to the process of how the information was given, or that they were frustrated that it had taken them two years to be listened to, and that they knew that something was wrong. But it wasn’t so much about an anger or, you know, the defence around actually having the cancer, it was more around the care that they’d received.

But actually, I think, quite quickly, when I said to them, you know, the question that I asked was, what stood out to you at the time of having a diagnosis? And for many of them, they described, actually, what it did was make me think, yeah, I can do this, you know, it was almost a positive, okay, here’s a challenge that I can can overcome, because, you know, as I mentioned, this mental health is long standing, and won’t ever go away. And I think that is, that is different.

That is different to, it’s hard to compare, isn’t it? You know, I need to ask 500 people who don’t have SMI versus 500 that do, I’ve just picked a number out of the hat there. But yeah, definitely, there definitely wasn’t.
And actually, one of the, one of the strategies that they deployed early on, which relates to the resilience, was around thinking about other people who were in a worse situation than them. So quite a lot of them said, you know, yes, the news wasn’t great. But I think about this person who’s got a child who’s got cancer.

So they were really doing that they were sort of deferring their feelings onto, but it’s so much worse for the people. So I’ll just get on with this. And I think that was really interesting.

Adrian Pogacian: I understand. And I have another question. Consequently, to what mentioned, we both know that there are two coping skills that were better for cancer patients, it’s problem center and emotional center coping.
Did you or did you not see these two coping strategies to severe mental illness patients? Or if you saw, which was the predominant problem solved or emotional one?

Laura Charlesworth: So, so both were described, and I don’t believe either was dominant. So if I think about emotion focused coping, initially, this very much came through through those strategies for resilience, which I’ve already mentioned. So a lot of this was masking their feelings or deflecting their stresses onto other people, you know, who they deemed were facing greater adversity than they were.

And they also kind of very much sort of did the process of reappraisal. So reframed their stress, and to try and kind of take its meaning in a different way. And I think that one of the ways that they did that is that if a health professional used a positive language, you know, such as this is curable, they absolutely just held on to the phraseology that was positive, and sort of reappraise in sort of an emotion focused coping way.

But they also very much demonstrated how they attempted to adopt problem focused coping strategies as well. And some examples of that would be through seeking to obtain further information about the diagnosis. So a lot of my participants said, you know, they were actually given very brief information about the diagnosis and the treatment and had to sort of self advocate to find out more, you know, what type of cancer is this?

What are my options? Because they weren’t given that straight away. And so they were trying to make informed decisions, they were trying to be part of their sort of shared decisions about the care, and were also seeking out the sort of specialist mental health when they knew that it was deteriorating.
But unfortunately, their ability to sort of modify their stress in that way, was limited by the environment that they were in the healthcare setting where the healthcare system actually was unable to provide that.

Adrian Pogacian: I understand. You mentioned reappraisal. And we all know that there are many, there are many different interpretations, positive reappraisal, reappraisal on the problem, etc.
Can we talk about self blame or blame the others in the case of severe mental illness patients? Because this is one of the primary feelings for cancer patients, or self blame or blame the others. In this case, can we talk about?

Laura Charlesworth: Yeah, they didn’t, they didn’t really talk about that. I think of all of my participants, only one talked about how they felt that perhaps some of their lifestyle behaviours were possibly related to their cancer diagnosis. But that was said in a very much, it was very brief, it was a very passing comment.

And then, and then it was used to say, so after I got the diagnosis, I thought I would try and have a better lifestyle because I think I probably got cancer because of my smoking and alcohol consumption. So it’s almost like a little bit of self blame there, but it was, it was never described in that way. And certainly, there was, you know, there was no reference to blaming others.

Adrian Pogacian: It might be also a question of cultural background. For example, in UK, maybe UK isn’t, let’s say, an entity or a state where you blame the others. For example, in Eastern Europe, blaming the others, it’s part of our daily life.
So it might be also a cultural background.

Laura Charlesworth: Possibly, possibly. And I think, like I say, I think because they, I think it’s really significant that the complexity of the lives of these people that they’ve, you know, like I said, most of my participants described having their SMI diagnosis for those that were an all but one had a formal diagnosis, came in their sort of late teenage, early 20s years. And if I said the average age of my participants was 50, they’ve dealt with really complex life situations.

You know, I don’t know if we’ll come on to talk about relationships, but you know, it’s a lot of complex discussion about their relationships, their personal relationships, their relationships with health, with the healthcare system. But so I think they’ve just, they’ve dealt with really difficult situations, like having a cancer diagnosis already. So they were almost prepared for that in a way that actually maybe many people that haven’t got SMI wouldn’t be.

And I think that might be why there’s a slight difference in that immediate response to the diagnosis that we see.

Adrian Pogacian: You mentioned previously that, if I understand correctly, in general, they receive the cancer diagnosis alone. Yes. Without a member of a family or without a caregiver.
I would like to talk about a little bit about the patients who has a family or a caregiver. Which is the role of a caregiver or spouse or children with focus to coping and also the negative consequences for him or her in this case?

Laura Charlesworth: Yeah, I think if I understood the question correctly, it’s about what is the role of the caregiver in relation to helping these individuals cope? This is a really fascinating area that I’m really interested in exploring in more detail, because relationships came through really strongly. So for, in fact, it came up in every single interview.

And for some of those interviews, the relationship was a positive factor that enabled their coping. And that was particularly where there was a close relationship with a family member that could have been a spouse, it could have been aunts, children, etc, who were able to support them, give them encouragement, do some of the very practical aspects, drive them to the hospital appointments, talk through information, help them interpret information, and also to help them to identify when their mental health was deteriorating, which was an important role. So absolutely, that relationship, whoever it is, was facilitative to their coping. Many of my participants talked about relationships in a negative sense.

I didn’t have anyone to go to the hospital with me, I can’t do this anymore on my own, sort of really moving into that sort of helplessness space, because they don’t actually have that support structure around them. And, you know, for some, it actually broke down relationships. One of my participants talked quite extensively about the fact that because they didn’t get help, the specialist psychological help, their partner actually sadly faced, you know, all of that with them.

And that their relationship didn’t kind of make it through that very complex situation. And they felt very much that if they had got that psychological support, that probably would have been different. So I think, in summary, that a caregiver, a good caregiver is facilitative to coping for people with SMI and cancer.

The absence of that, and that can be, you know, close relationships, but also the sort of wider societal relationships was really damaging and impacted very negatively on their coping.

Adrian Pogacian: We don’t have much time, so I will go to the last question. You said about the positive role of caregivers in the coping process for SMI patients. But during your experience, during the study, did you met situations when caregiver walk away or from someone with severe mental illness?

So it try and try and try and at the moment, just can’t get it anymore. Did you face some situations?

Laura Charlesworth: So in most parts, no, there was one relationship that was described that broke down, but that it wasn’t positioned to me as the caregiver walked away because they couldn’t cope. It was, it was that their relationship broke down. And it sounded like it wasn’t equal, you know, contribute, contributory decision.

But I think it’s, it’s important to say that actually many of my participants did not have a close caregiver. So for some of them, they didn’t have anybody who they would describe in that way. And we’re very much going through this alone or with the support of a, you know, a support worker, healthcare support worker who would take them to their appointments, or they’ve got relationships kind of in society, but the closeness of those relationships is very limited.

So that, you know, their acquaintances or loose friends, they’re not close relatives, if that makes sense. So it might not be a reflective answer, given that many of them wouldn’t have had a close caregiver to have experienced that situation.

Adrian Pogacian: Yeah, which is unfortunately a pity to face a severe mental illness alone, and then a cancer diagnosis, when for some of us, even with family support, it’s also very difficult. And all the family structure is changing and all the strategies or the plans are destroyed. So I only just imagine how it can be or how they can feel about it.
Laura, if you want to say something.

Laura Charlesworth: Yeah, I think on that is that actually, for some of my participants, there’s a reason why they didn’t continue with their cancer treatment. So actually, if we were looking at clinical outcomes in relation to cancer mortality, or no progression free survival, actually not having relationships and someone to support them through that feeling of helplessness meant that they just chose they couldn’t, they couldn’t do that anymore. And I think that is really significant.

And there are probably ways to support that, I think, by thinking about peer support models, thinking about having a, you know, a named support, supportive contact, it doesn’t have to be someone with really comprehensive clinical expertise, you know, it’s a, it’s an advocate and a buddy or, you know, somebody who’s just with them that could help that, I think we would see a change in uptake and treatment compliance and, you know, a desire to continue to go through the process.

Adrian Pogacian: Very interesting. Laura, thank you very much for your time. Thank you very much for being with us today for all this interesting information about not easy subject to debate within psych oncology, within cancer care, and good luck on your research, on your work, and on your future research.
Thank you for being with us today.