I recently came across a series of research articles focused on complex post traumatic stress disorder (complex PTSD or CPTSD) and the daily life experiences of those with the diagnosis and their relatives. As you can imagine, I was excited as I had not heard of anything specific to relatives and complex PTSD. I reached out to the head researcher Manuel P Stadtmann, PhD to see if he might agree to an interview. He kindly agreed.
Dr Stadtmann is the lead researcher of a series of studies focused on the daily life experiences of sufferers (survivors) with complex post traumatic stress disorder (CPTSD). As part of the research, Dr Stadtmann and his team also explored the daily life experiences and perceptions of their relatives (close supporters) and the importance of relative support in symptom management of complex PTSD.
Glossary of Terms
|Relative||Someone close to the person with complex PTSD and not necessarily related by blood. Identified as family or relatives in this post.|
|ICD-11||International Classification of Diseases version 11 is the global health standard for disease classification and statistics.|
|WHO||World Health Organization is a specialized agency of the United Nations responsible for global public health.|
Heather Tuba (HT):
I was very excited to read your research as I believe it is the first one that includes the daily experiences of relatives. For me, the conclusions of Mastering Life Together study validated what I observe in the lives of partners and what I have personally experienced. Thank you so much for your work.
Manuel Stadtmann (MS):
Yes, I absolutely get it or I assume I get it. When we started this project, there was a question about the real life experiences of the sufferers and their relatives although at first, we aimed to assess the ICD-11 (International Classification of Diseases) diagnosis of complex PTSD.
But we decided to aim part of our research specifically at real life experiences. It’s really validating for me to hear that it is reflective of your life experience.
We had some discussions whether there would be any results concerning the ‘real life’ of the patients or sufferers.
Dr Manuel Stadtmann
HT: Thank you. Could you provide an explanation as to how you designed your research?
MS: As I said, we thought we wanted to assess the proposed ICD-11 complex PTSD diagnosis but we decided that was not enough. We also wanted to assess the symptom management of the sufferers with the aim of providing a concept for a new model reflective of their struggles during daily routines and life. We decided to implement a mixed methods design. We assessed the patient’s symptom burdens with several instruments and also with the proposed criteria for the ICD-11.
For the next step, we looked into different symptom burdens of those inpatients and conducted interviews with them.
HT: How long did the studies take?
MS: We needed four years from 2015 to 2019.
In the first year, it was about preparation and receiving permission from ethical commissions and arranging with the clinics and all of that. It was a lot of organization before we could start data collection.
HT: How many studies did you conduct?
MS: We conducted four studies and the fifth part is a summary of the results.
HT: Who was involved in the research? Was your research done solely in an inpatient setting?
MS: The first aim of the research was to describe the symptom burden of the patients with the complex PTSD diagnosis in their regular life. The research was not done solely on inpatient settings.
Our research team included several people: a professor at the University of Zurich, Merck; my clinical supervisor, a psychiatrist and another one from Germany specific to qualitative research and specific to the experience of relatives. Everyone had an area of expertise.
HT: Did the research take place prior to the acceptance of CPTSD by the WHO for the ICD-11?
MS: Yes, it was. One of my supervisors, Dr Andreas Maercker from the University of Zürich provided access to the instrument “international trauma questionnaire” for diagnostic purposes, which enabled us to do the research.
HT: As of right now, the category of CPTSD is not being used in clinical settings, correct? It was accepted in 2019 by the WHO and in 2022, it will be officially used.
MS: Yes, it should be. It can be used in a clinical setting at that time.
HT: How long has there been interest for the inclusion of CPTSD in the ICD?
MS: Many years. First, it was described by [Judith] Herman in 1992. After that, it took several years. Marylène Cloitre, Andreas Maercker, and that group started to conduct several studies. For instance, they compared if there was a difference between the proposed diagnosis and borderline personality disorder. It took place over several years and included several studies. We can now say there is solid research providing evidence for the distinction in those diagnoses.
Although PTSD and CPTSD are described as sibling diagnoses they are different.
Dr Manuel Stadtmann
The daily life experiences of persons with Complex PTSD
HT: What were you and your colleagues identifying as missing in terms of research?
MS: I have also spent several years in clinical practice. We observed that for many patients, the experience of the inpatient treatment setting provided a sense of ‘safety’ or the feeling of being safe. The patients had their treatment there and it was obviously, hard to do. However, when they went back to their daily life and routines, it was something completely different for them. The struggles sometimes began again or continued depending on the situation.
We thought it might be helpful to have another perspective that looked into their daily routine and the daily management of the condition.
HT: You categorized the experiences into a model, correct?
MS: Yes. The model we developed is similar for the patients and for the relatives. They are connected so they had to look similar.
For the sufferers, we clustered their responses. It was quite interesting to see that for many of the patients they did not know it was a diagnosis.
Many of them explained their symptoms like they were weak or there was something else lacking in themselves. They did not see it as a mental health condition.
Dr Manuel Stadtmann
HT: That perception is so accurate.
Many people think it is a personality quirk or a sense of being ‘bad at relationships’ or ‘not having limits.’ It’s very internalized as something wrong with the self versus observing it as a condition. I appreciated some of the statements that were included in the studies as being true-to-life.
Participants identified their symptoms as part of their personality and their being: something natural and given, based on the circumstances they mostly grew up with. They sometimes thought their very self was not strong enough, weak, or just odd compared to other humans.
MS: As I said, the core phenomenon we observed is a state of not recognizing the symptoms as such and instead, describing the symptoms as a personality trait or something else but not a condition. That was the main phenomenon in our first study.
Many of the sufferers tried to handle their symptoms in several ways. We called it a functional state. For example, many sufferers worked seven days a week and pursued different levels of education in order to focus on something besides their condition. While this level of function provided positive feedback, it was not the best way to handle the condition.
We observed other issues as well. For instance, for the sufferers having a relative near them could improve the symptoms or it could make it more difficult for the sufferer.
Physical health conditions could also make the symptoms worse.
HT: I have observed this as well.
It seems many of those who suffer do at some point reach this place where they can no longer sustain that level of outpoint. It’s usually some sort of tipping point where this is an interpersonal situation, a loss, or a transition, or a parenting issue and the whole thing crumbles.
Relatives seek understanding as to why someone who was so functional can no longer manage their own care
MS: I fully agree.
HT: This is a source of great stress for families because there are many overlapping and complicated issues including a livelihood.
MS: Yes, I absolutely agree. This is the next step in our model identified as paroxysm.
As you describe, when something happens, it crumbles and the symptoms begin to erupt. The sufferer cannot explain why it is happening now. Sometimes they think it is just one thing, which they think other people could handle quite well. The sufferers ask: ‘Why can’t I do it?’
The connection between the condition is not made. It’s very difficult.
HT: What did you identify after this?
MS: When people stay in this state without proper treatment, they may try to go back to what seemed to work. Unfortunately, the ways they used to function are not as effective and they may continue to go through a cycle of trying to function and reaching a state of exhaustion and collapse.
As a next step, we proposed finding perspective and having access to proper treatment.
The daily life experience of relatives of persons with Complex PTSD
HT: What did you observe about the experiences of the relatives?
MS: It is a complex issue. On the one side, you have the sufferers not having a diagnosis and not knowing what is going on. On the other hand, you have relatives providing support as best they can. Often for the relatives, it’s even more difficult because they can’t understand why someone is reacting the way they are. We observed that for many relatives, it’s even more challenging to understand than for the sufferers themselves.
Often for the relatives, it’s even more difficult because they can’t understand why someone is reacting the way they are
Dr Manuel Stadtmann
In one of our studies, there was another result. Even when some of the sufferers had the diagnosis, they didn’t want to tell the relative about it or what event caused the diagnosis because of feelings of shame and guilt. When the relatives didn’t know and when sufferers didn’t want to share their experience, the relatives had to find a way to cope.
HT: I remember reading that. Is this where having a relative could be what the study called a ‘barrier’ for the sufferer?
MS: Yes, it could be. Of course, the relative wants to know, to ask, and to understand. Sometimes, that can provoke a lot of stress and tension for the sufferer. That could be one way of being a difficulty for the sufferers.
Another way is when the relationship is so close together that when the sufferer is having a bad day, the relative is having the same reaction. As well, when the sufferer is doing well, the relative also mirrors that. We call the relationship ‘symbiotic’. That could also be a barrier because then the sufferer could feel like they cannot focus on their own care and they have to worry about the relative.
Support for relatives
HT: I think this is where support for relatives could be very helpful.
If a relative knows they can go to this group or place for support on an ongoing basis, the relative may be less likely to get drawn into the suffering of the affected person. The relative could have an external anchor for themselves. This is where I see the biggest gap for supporters.
MS: In Switzerland, it is the same.
Many of our participants in the study criticize the lack of information and would like more specific involvement in treatment for relatives. Otherwise, there is no understanding whatsoever as to what the condition is.
The relative participants also said there is a great need to have several options for formal social support. For example, a group not for sufferers but for the relatives so they can exchange experiences and support each other.
HT: What other observations did the studies find about the relatives?
MS: We observed that it could be a healthy relationship when the relatives learned to set boundaries. For example, if the relative said: ‘I am here. You can trust me. I can help as best as I can but this is my boundary and I can’t go past that.’ We had some relatives functioning that way and they reported it worked for them. It helped them and it helped the sufferer.
Also, accepting that sometimes the sufferer will struggle and have bad days. The relative would just be there and not necessarily provide any verbal communication. Accepting that these types of days happen is something described as very important.
Dr Manuel Stadtmann
Finally, relatives having their own time, place, interests, or hobbies for themselves is also important.
HT: In a way, it’s not just an acceptance of the condition but an acceptance of the impact on the relationship.
MS: It is. In the studies we had relatives described as not relatives by blood but described as someone near to oneself. We also had husband and wives. Some of them did not stay together. It’s difficult for them.
HT: Are there any facilities offering relative support?
MS: Right now we are in process of obtaining the funding for a new study where we are going to implement the results in a group for relatives. To my knowledge, it’s going to be the first evaluation study for relatives in Switzerland.
Of course, there are several relatives helping themselves but it is not provided by healthcare. These relatives are learning and supporting themselves on their own but it is difficult.
HT: What would be most helpful based on your research for relatives?
The first step is understanding the condition in order to understand why the sufferers react the way they do. Secondly, to take care of themselves and to realize when they need to set a boundary.
Dr Manuel Stadtmann
HT: Is there anyone else doing research in the area of relatives?
MS: I know of only a few studies.
To read the studies
|Symptom management in complex post-traumatic stress disorder (ICD-11), view and experience of their relatives: a mixed methods approach (Research Proposal)|
|Proposed ICD-11 complex posttraumatic stress disorder, characteristics and symptoms of adults in an inpatient psychiatric setting: A descriptive study|
|Why do I have to suffer? Symptom management, views and experiences of persons with a cPTSD: a grounded theory approach|
|Mastering life together – symptom management, views, and experiences of relatives of persons with CPTSD: a grounded theory study|
Manuel Stadtmann, PhD currently works as a lecturer in the Master`s programme, Department of Health at the University of Applied Sciences, St.Gallen, Switzerland. Further he is a postdoctoral research fellow at the Department of Psychology, Division of Psychopathology and Clinical Intervention, University of Zürich. Dr Stadtmann conducts research in the field of trauma disorders with special interest in complex post-traumatic stress disorder, symptom management in mental health, and aspects of mental health involving relatives.