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 case study examples.
Patient practices and experiences with enteral feeding
Project team members include:
- Principal investigator: Eleah Stringer
- Team members: Katie Tsoupakis, Lindsay Van der Meer and Tamara Cohen
What is this project about?
Our project has two goals:
1. To investigate how often people with head and neck cancer treated at BC Cancer centres require feeding tubes.
2. To learn what information patients would like to know about feeding tubes and how they would like this information shared with them by their oncologist.
We will then create a resource to guide oncologists’ conversations on feeding tubes with future patients.
Who did you partner with for your project?
We partnered with two survivors of head and neck cancer who were treated at BC Cancer centres.
How did partners with lived experience contribute during key stages of your research project?
Research stage
Data collection
How we partnered
One of our patient partners played a crucial role by attending both of our focus groups to ensure participants — comprised of cancer survivors — felt welcomed, safe, heard, and respected during the entirety of the focus groups.
Their presence and involvement in the focus group created a trusting environment from the very beginning which led to vulnerable conversation and deep, valuable insights to help improve patient care.
Research stage
Other: Developing assessment materials
How we partnered
Our patient partners helped us develop the script for our patient focus groups to ensure the questions not only addressed the study objectives, but most importantly, are sensitive and specific to areas of interest to patients. They helped us adjust language and select an icebreaker activity that would well-received by a group of survivors.
What’s your advice for someone who wants to collaborate with partners with lived experience?
Patients have very powerful stories that you can learn from to enhance your project or the impact of the results of your project.
My advice is to hold space for patient partners so that they can share their experiences. Not just during team meetings, but through other means that could be less intimidating, such as through email, where they can think through their words in advance.
Stories can be emotional, so avoid assuming that a patient partner will share their story. After all, a story is personal so it’s their choice if, when, and how to share.
How can someone learn more about your project?
- Visit the REACH BC study posting and contact us: Tube feeding during head and neck cancer treatment across BC Cancer: Focus Group.
Acknowledgments and thanks
We would like to thank the agencies who have generously helped fund this study:
- BC Cancer Foundation
- Michael Smith Health Research BC
- Lotte & John Hecht Memorial Foundation
We would also like to thank BC Cancer’s Patient & Family Partnership and Experience team for their guidance through our patient partner engagements.
This project was collected as part of a casebook that demonstrates patient-oriented research in BC.
Explore the casebook