This casebook project is one of many featured in the lived experience in research road map resource, developed by the BC SUPPORT Unit. Explore the full set of casebook projects.
Complex relational trauma and PTSD: Closing the gap in healthcare — A guide for researchers
Project team members include:
- Principle investigators: Colette Smart and Lori Herod
- Research assistants and content designers: Nika Marefat and Mitchell Gaudry, students of the Department of Psychology, University of Victoria
- Advisors: Jessica Lazar, Malachi Gillihan, six patient partners*
* As survivors of complex relational trauma, they remain anonymous to protect their privacy and confidentiality
What is this project about?
The main goal of our project was to design a guide for healthcare institutions and providers about complex relational trauma (CRT), complex PTSD (CPTSD), and trauma-informed care (TIC). We aimed to identify a gap in healthcare for survivors, the reasons for this gap, and what is needed to address the gap.
Who did you partner with for your project?
We recruited adult CRT survivors from the community to participate in individual qualitative interviews about their healthcare experiences.
How did partners with lived experience contribute during key stages of your research project?
Research stage
Throughout the project
How we partnered
Lori Herod conceived and co-led the project. She is a complex trauma survivor who also served as a patient partner for the research study phase of the project.
As a patient-initiated project, this project is somewhat unique for patient-oriented research, but highlights the fact that patient partners can propose, develop, lead, analyze and disseminate research with the help of academics, clinicians, researchers, and fellow patient partners.
Research stage
Knowledge translation
How we partnered
Our project team included 6 patient partners who met regularly with the core team and assisted us with developing the guide based on the study findings, literature review, and their own lived experiences.
This meant the guide was informed throughout by the lived experiences of study participants, but also by patient partners as it was developed, ensuring it was as relevant and useful as possible.
What’s your advice for someone who wants to collaborate with partners with lived experience?
For researchers: Ensure that the aim and scope of the research are clearly explained to patient partners, so they understand topics that are in scope of the project and those that are beyond the scope.
Also, it’s really important to give patient partners an honorarium, as what they do is work — that is, sharing their lived experience and expertise and contributing to the efficacy and authenticity of the research.
How can someone learn more about your project?
Visit these websites:
Acknowledgments and thanks
The project team would like to thank:
- BC SUPPORT Unit, Island Centre (Hiro Ito and Madeline Nealis)
- SMARTLab
- University of Victoria, Department of Psychology
- Island Health
This project was collected as part of a casebook that demonstrates patient-oriented research in BC.
Explore the casebook