Participants Required for Study about Recovery-Oriented Care for CPTSD

[Kizzie]

Complex PTSD survivors over the age of 19 who are able to read/write in English are needed for a study to learn more about what type of mental healthcare you have received, what has worked, what has not, and how therapy is related to recovery from/with C-PTSD.

This research study will be conducted by Dr. Colette Smart and her research team, SMARTLab, in the Department of Psychology at the University of Victoria (UVic) in British Columbia, Canada. This research has been approved by the Human Research Ethics Board of UVic.

The main study will involve a short demographic form and a survey that will take around 60 minutes. We hope to recruit a large sample of participants.

Of this large sample, we will invite a smaller subset of people to participate in focus groups to talk more specifically about recovery-oriented care for C-PTSD. The group would take 2 hours.

To register please click on the following link which will take you to an online screening form – https://www.surveymonkey.ca/r/recoveryscreener

If you are eligible to participate you will be provided with a study code and the research team will contact you to share the Informed Consent form and a link to the study.

If you have questions/comments, please email the research team at smartlab@uvic.ca rather than me (Kizzie). I cannot respond due to the ethical guidelines for the study which require me to keep at arm's length.

Thank you!

[Kizzie]

The study research team just contacted me to advise there will be compensation for your participation as follows:

Will You be Paid for Taking Part?

For the survey portion, you will be offered $20 for your participation. If you are interested in the focus group and are selected to participate, you will receive a $40 gift card to purchase art supplies, as well as a $25 honorarium for attending the group. If only the survey portion is completed (even partially), you will receive $20. For the focus group, if you spend less than $40 on the art supplies, you are welcome to keep the rest. If you decide to leave the group early for some reason, you will keep the $40 for art supplies but will forfeit the $25 for group participation.

Please note that because of issues with bots and scammers, compensation for study participation is not automatic. We will need to verify your responses before you receive compensation for this study. We have multiple ways of checking the validity of your responses. Up to 20% of participants may be asked to participate in a video call to verify their identity before being compensated. Be advised that wrongfully participating in a study for which you are not eligible, or by giving false responses, is considered fraud and means that compensation (payment) will not be provided.

If you have questions/comments, please email the research team at smartlab@uvic.ca rather than me (Kizzie). I cannot respond due to the ethical guidelines for the study which require I be kept at arm's length.

[Kizzie]

I talked with Dr. Smart from the University of Victoria yesterday and they still need more participants so if you're willing and able please join in. These studies are one way for us to have a voice in our care, this study in particular as it is about what has worked and not worked in terms of treatment for survivors.

Kizzie

[Kizzie]

There's a really good article by Dr. Smart titled "Complex Trauma Survivors - Have You Received The Care You Need?"  about the study: 

"This summer, I did something I've never done before in all my years as a professor. I taught a month-long summer course, which would be intense enough, but it was on the topic of trauma, which upped the ante significantly higher. I prepped like a fiend for months for this course - not only the content, but the process of teaching the course. I wanted to make sure the students would not only be able to metabolize the amount of content I would be providing, but also insure that they would not become demoralized by a month of listening to me talk about trauma every day.

Suffice it to say, I was delighted today when I met with a student from my class (who is also a subscriber now, and may be reading this!) who told me that my class was one of the few that left her with a sincere feeling of hope. Indeed, I made a point throughout the course to emphasize again and again the centrality of hope in trauma recovery. Personally, I do not know how one could work in trauma recovery and not rely on hope (which is partially why my last essay was on that topic). And it is not a blind optimism that everything will work out. Rather, it is a willfulness to move toward the possibility that things could - nay, should - be better than they currently are, because the alternative is intolerable. When I think about people I've sat with trying to find the strength to get out of abusive partnerships, groups, families, jobs, trying to get out from under the weight of intergenerational trauma, collective trauma and cultural genocide, there has to be hope. As philosopher Jonathan Lear explores in his book Radical Hope, the more irrational it seems to invoke hope in a particular situation, the more dire that situation seems, the more urgently we must call upon it.

My whole career - and really, since I was a teenager - I have worked with people with afflictions that are simply not curable. Chronic and terminal illness, catastrophic illness, and debilitating traumatic stress. If I took a problematizing mindset, focused only on "fixing" people's symptoms, I think I would have gotten demoralized and burned out a really long time ago. Either that, or I probably would never have been able to keep a client. It turns out, many people really don't like it when you try to "fix" them. Maybe you've had this experience yourself - I know I have.

When reading Jean-Paul Sartre's Nausea this time last year, I had an insight - that one can look into the abyss of one's suffering forever, or one can make a conscious choice to step back from the edge of the abyss and start moving toward a better place in life. This process of making a choice is not a clinical one - it's an existential one. As we discussed in my class this summer, rather than taking a medical model approach of fixing symptoms, we could take a dialectical approach - in one hand, holding the truth that very bad things happen to good people, and people can learn how to live a fulfilling, meaningful, and loving life in the aftermath of trauma and adversity.

This is the essence of a recovery approach.

Recovery means that while we may never fully eradicate the bad things that have happened, we can still live a meaningful life. Not by denying the problem's existence or minimizing its impact, but by growing ourselves larger around the problem. And in doing so realizing that that problem is but one part of who we are, and it does not need to define us.

Dr. Lori Herod is a complex PTSD (CPTSD) survivor and the founder of Out of the Storm (OOTS), an online platform for survivors of complex relational trauma. Lori has been one of my main collaborators and someone I would now count as a friend, and as I watch her advocacy and showing up in the world, I see someone who has certainly grown herself around the adversity she has endured. Although complex trauma can be caused in many circumstances, probably two of the most common causes are those situations that bring people to Lori's forum - adverse childhood experiences (ACEs) and intimate partner violence (IPV). A recent U.S. epidemiological report indicated that among U.S. adults surveyed between 2011–2020, approximately two thirds reported at least one ACE and one in six reported four or more ACEs. A recent systematic review and meta-analysis by Bellis and colleagues noted that total annual costs attributable to ACEs were estimated to be US$581 billion in Europe and $748 billion in North America. Likewise, intimate partner violence is also highly prevalent. U.S. statistics indicate that that more than 1 in 3 women and more than 1 in 6 men have experienced IPV in their lifetime, and in Canada, rates of IPV have been increasing over time, with 117,093 victims reported by police in 2022, a 19% increase since 2014. Given the mental and physical health comorbidities associated with complex relational trauma, it is increasingly recognized as a major public health issue.

On OOTS, Lori has over 14,000 people from more than 87 countries on her forum. She has maintained this platform for well over a decade, and has been hearing for years how survivors cannot access good healthcare, despite there being a growing awareness of the impact of trauma on mental and physical health. Two years ago she approached my team, and some other collaborators, to conduct a study on this topic, so that we could learn from survivors' experiences and ultimately create a healthcare resource that could educate providers on how to provide more effective trauma-informed care. The results of the study can be found here (the paper is freely available) and the healthcare resource can be found here - feel free to download both and share with your friends, family, and healthcare providers.

Coming out of this study, it made me wonder why survivors are struggling so much to access appropriate care. There is a lot of fierce debate about the best ways to approach treating trauma, with some clinicians and researchers in the field still denying that CPTSD is a real thing distinct from PTSD and borderline personality disorder. Some of it may also be financial constraints, and some of it may be a lack of appropriately trained clinicians in one's local area. Coming out of the study we just did, it made me wonder, what would it be like to actually ask survivors themselves:

What do you think is the best way to approach mental healthcare? What has worked, what hasn't, and why?

And, equally importantly:

What would a positive vision of recovery look like? What would instil hope, and motivate someone to even want to recover, to find the strength to recover even when the weight of suffering seems immense?

Just like Sartre alludes to in Nausea, we can be poking away at traumatic symptoms and memories forever, but in my years of working with people, there also needs to be some positive vision of what a life worth living could look like, supporting people to grow larger around their suffering. My team and I would like to learn what that vision might be.

This is the focus of one of our current research studies. If you are reading this and identify as being a complex trauma survivor and have CPTSD, we invite you to reach out and inquire about our study. I'm pasting the flyer below, and my team can answer any questions you have. Please share this information with anyone else you think could benefit."

It's a shift towards asking us what we want in terms of care and hope so if this is important to you please consider participating in the study. Dr. Smart is hoping to get a large number of participants so recruiting is ongoing. 

Kizzie