Photo Credit: Amelia Howe
International Research to Transform Cancer Care for Teens and Young Adults
“Patient-led research really takes into account how young people think using different methods to explore our experiences that fit with us much better.” – Sophie reflecting on her experiences within the PAR 3 TY Project
“It’s nice for patients because it’s comforting when someone feels the same. The healthcare professionals are like ‘Oh, this how they actually feel! There are all these factors of cancer that the professionals don’t think about while focusing on treatment.’” – Amelia reflecting on how engagement in the PAR 3 TY Project helped to build relationships with other young adults with cancer and convey their experiences with adult allies
While it may not have been a party exactly, the atmosphere of an international research pilot was one of conviviality and optimism bringing together a group of young adults with cancer with researchers to creatively explore how their experiences can improve cancer care and support for other young adults with cancer going forward. Each of the researchers also have lived experiences with cancer, and understand that being diagnosed with cancer as a young adult is different with distinct medical and psychosocial challenges compared to older adults and children with cancer. For a young adult, a diagnosis also coincides with major life transitions (e.g., pursuing education or career, meeting a partner, having and raising children).
The pilot, called the PAR 3 TY Project (PARx3 research methodologies for Teens and Young Adults Living with Cancer) was a collaboration between 企鹅电竞查询v6.9 安卓版 University and the University of Leeds in the United Kingdom with funding from the British Academy . The project sought to engage teens and young adults diagnosed with cancer between the ages of 15 to 25 to better understand their experiences with cancer and creatively share their perspectives and ideas about cancer with care alli es – family members, healthcare professionals, policy makers, community organizations and so on – to create changes in cancer care and support for teens and young adults.
The three lead researchers – Professor Alice O’Grady, Applied Performance scholar and Dean of Student Education from the University of Leeds, Dr. Cheryl Heykoop, Master of Arts of Leadership – Health Specialization Program Head in the School of Leadership Studies at 企鹅电竞查询v6.9 安卓版 University, and Dr. Will Weigler, an independent Applied Theatre Director from Victoria, BC – saw the project as an opportunity to bring together their research passions and interest in cancer care to pilot a new, integrated research methodology with young adults.
Working with four young adults (co-researchers) in the UK who had been diagnosed with cancer and gone through treatment – Sophie, Jack, Amelia, and Tegan – the researchers blended three participatory methodologies:
- Patient Activated Research (often referred to as Patient-Oriented Research ) – patients take the lead in deciding/choosing what they want to say about the topic and how they want to share it;
- Participatory Action Research – everyone contributes their own knowledge to learn from each other, and then collectively consider improvements and change; and
- Performance as Research – co-researchers experiment with performance-based techniques in order to find the most impactful way to embody their insights in a creative piece that they can then showcase to a select audience.
Through the blending of these methodologies, these young adults created powerful performances to share their perspectives on being a young adult with cancer and inspire change in cancer care. For a more thorough description of the research process watch this video created by Sophie, Jack, Amelia, and Tegan.
“We could be open, blunt and brutal in that environment sharing frustrations that we all wish other people knew, even people who have worked in cancer for years and years. It was interesting to see them receive these feelings and understand what we mean. Whatever we spoke about was very much driven by us.” – more from Sophie on her experiences engaged in the PAR 3 TY project.
“You don’t have to be careful with what you’re thinking and saying in this environment, because it’s an open space and the conversation is just natural.” – Jack reflecting on his experiences in the PAR 3 TY project.
“I found it [the research process] very liberating for myself, because it was like okay someone's not telling me what I have to do, I can create what I want ...we weren't put in a box...” – Tegan reflecting on her experiences in the PAR 3 TY project.
Implementation – the Need to Pivot
Originally, the team had intended to meet through a series of in-person workshops culminating in a live performance and facilitated feedback discussion with care allies. The pandemic, however, prompted a pivot to online engagement through six biweekly Zoom sessions with supported creative work taking place in between.
To support the process, each participant received a ‘creativity kit’ at the outset including art supplies and a deck of staging strategy cards to help craft compelling, individual video performances about their experiences and insights as young adults with cancer. The challenge was to depict these reflections through crafted staging techniques, rather than ‘confessional’ monologues, as an impactful means to trigger discussion and accessible ways to transform care. These videos were then premiered with an international cancer care ally audience via Zoom.
After watching the videos, cancer care allies shared some of the following reflections:
“I was struck by how they turned assumptions on their head! Gave me major goosebumps.”
“I would love to see this work shared in schools and with healthcare professionals to build understanding, empathy and communities of support.”
“I loved that the project allowed the team to be really creative, using their own voices to produce something very different from ‘normal’ cancer stories.”
This pilot is but the beginning of a concentrated effort to transform cancer care for teens and young adults through integrated participatory research. Plans are underway to build upon this pilot and integrate the process and learnings into Dr. Heykoop’s program of research, supported by a Michael Smith Health Research BC Scholar award and a Vancouver Foundation Participatory Action Research grant , to transform cancer care in Canada and beyond.
It’s time to keep the PAR 3 TY going to transform cancer care for young adults!
Contact Dr. Cheryl Heykoop at Cheryl.firstname.lastname@example.org or Jennifer Wolfe, Research Program Coordinator, email@example.com