Research Stories
We make an impact by training patients to bring patient-informed research evidence into health care planning, policy, and practice.
Overview
Explore our research stories below.
UCalgary's PaCER Program Builds Research Capacity in Indigenous Communities
Tawnya Crowshoe and Tamara Low Horn
Indigenous people in Canada are more likely to experience a delay in cancer diagnosis and have significantly lower survival rates than their non-Indigenous counterparts, according to the Canadian Partnership Against Cancer.
From her time working in health care, Crowshoe knew that Indigenous people experience unique barriers to accessing cancer screening, diagnosis and treatment. As a child, the loss of her 51-year-old grandmother to cancer left a lasting impression.
“When my project partner and I looked at the data of cancer on reserves and saw over and over again all of these late-stage diagnoses, we’re talking stage 4, it made us wonder why it isn’t being caught earlier,” she says. “We wanted to understand the reasons behind it, and more importantly, identify solutions on why these gaps and barriers exist.”PaCER Director Nancy Marlett, left, with PaCER 2019 grad Tawnya Crowshoe.
When people in the community have the training and skills to do this kind of research we can take control of our own health and well-being, and have a voice at the table to address disparities in an informed way
Tawnya Crowshoe
PaCER researcher
The Indigenous-led study headed by Crowshoe and Tamara Low Horn focused on screening and early cancer detection in Indigenous communities, and highlights the need for change.
“First Nations people have poorer survival for 14 of 15 of the most common cancers. We need a multi-faceted approach to address this significant disparity,” says Crowshoe.
Crowshoe would like to see the inclusion of Indigenous healing methods alongside western medical treatments, and a trauma-informed approach that addresses the lasting impact of residential schools on health when treating Indigenous patients. She also says improving on-site access to primary care physicians, and improving access to transportation and housing for residents who must travel for care is crucial.
“When people in the community have the training and skills to do this kind of research we can take control of our own health and well-being, and have a voice at the table to address disparities in an informed way,” says Crowshoe.
Understanding Patient Experience With Bladder Cancer In Alberta
Susan Nguyen
Bladder cancer is the 5th most common cancer in Canada. It is one of the more persistent cancers with a high recurrence rate of 50-80% making it the most costly cancer to treat per patient because of the repeated surgeries, treatments, and lifelong follow-up. There is a lot of clinical research about bladder cancer, but little has been published to date about what a patient really experiences when going through a journey with this disease.
In 2016, Dr. Nimira Alimohamed, an oncologist with the Tom Baker Cancer Centre in Calgary, and Susan Nguyen, a PaCER researcher and two-time bladder cancer survivor, gave a presentation to the Alberta Health Services (AHS) Cancer Strategic Clinical Network (SCN). The purpose of the presentation was to obtain funding to contract PaCER researchers to do a study about what a bladder cancer patient’s experience is like in Alberta.
Susan Nguyen, and fellow PaCER researcher Marlyn Gill, who has familiarity with cancer and chronic disease, got the study underway in the fall of 2017. Thirteen patients were in a focus group or narrative interview. The study data revealed that although the care for bladder cancer patients was very good overall, there were many gaps along different points in the journey. The main gap was a patient’s difficulty in obtaining necessary information especially pertaining to next steps. Susan felt her own experience was validated when one focus group individual aptly put it, “You have to beg, borrow and steal to get information.”
Read the full report: Understanding Patient Experience With Bladder Cancer In Alberta by PaCERs Susan Nguyen and Marlyn Gill
You have to beg, borrow and steal to get information.”
Bladder Cancer PaCER focus group participant
Uncovering the Experiences of Adolescents After Suffering Concussions
Romita Choudhury on behalf of PaCER Interns Ash Kolstad, Gina Samuels, Mark Tadeja, as published in the PERG Fall/Winter newsletter 2017
The PaCER interns – Ash, Mark, and Gina – undertook a study to explore the experiences of adolescents (ages 14 to 20) who have undergone treatment for concussion or what is called mild traumatic brain injury (mTBI). The internship was sponsored by the Integrated Concussion Research Program led by Dr. Keith Owen Yeates, Department of Psychology, at the University of Calgary.
Concussions are a growing health epidemic among youth. Current concussion research has produced a great deal of knowledge about adolescent experiences of treatment and recovery; however, these studies have focused largely on clinical information and analysis provided by health care providers, caregivers, sociologists, and psychologists. To understand the broader and longer-term impact of concussion on young people, it is important to understand the experiences as represented by the patients themselves – in their voice and language. How, for example, do they see the challenges of returning to school, work, sports, and social life in general? What concerns them most? What do they struggle with in their everyday life? What resources do they draw upon? Where do they see themselves in the journey to recovery?
Ash, Mark, and Gina, having had severe to mild concussions themselves, they were able to create a space in which the individuals could speak of their experiences in a way they had not been able to speak before. In fact, we were sometimes overwhelmed by the depth and candour with which the young people described their experiences.
The group listened to patient narratives and were guided in analyzing with care and carefulness what recovery meant to patients. In the process, not only were they able to highlight what patients have been able to achieve, but also where some of the gaps lie between the medical pathway and the patients’ journey, what is visible and recognized and what remains unspoken and undervalued in the treatment process.
Some of the findings from this study were presented by the group at the SPOR Summer Institute in Edmonton on June 27, 2017. They hope to be able to develop this work further to broaden its impact and improve care for the many young people who are living with the physical, intellectual, and emotional effects of concussion and are trying hard to lead fuller and more complete lives.
Finding a Theory of How Health Works and Why: the Story of Wellspring
Cancer survivors and their families at Wellspring (WS): a Calgary-based wellness centre offering self-help programs and services, tells of the experiences of patients living with cancer and those who care for them.
A Salutogenic theory of community wellness
We were PaCER interns from WS, a cancer wellness centre built upon social support who wanted to understand how and why it worked. This is our story of how Salutogenesis changed our initial description of WS into a Salutogenic theory of community wellness.
Sanctuary quelled emotional stress, energy classes supported energy, fear and loss were diminished through humour and joy, and mortality was no longer a stressor but a silent and ineffective presence.
PaCER Intern
During our Set focus group, we decided to observe the setting, the activities, and interactions. During Collect we sought to witness firsthand what was happening at WS. Our final research report portrayed WS as ‘A place to Go’ – a community defined by: Sanctuary, Shared Energy, Humour and Joy, and Mortality. These community strengths foster an expectation of ‘Give it a Go’ through Acceptance, Encouragement, Contribution and Self Worth.
When we presented our findings to a group of Oncologists, they didn’t see the differences between their work and the impacts of a wellness environment. We went back to our data using the theory of Salutogenesis to deepen our understanding of the origins of health in WS. To our surprise we discovered that the trigger point of Salutogenesis stressors that disrupt health was missing in our observations. Instead, we were witnessing a program ('A Place to Go') counteract overwhelming stressors of cancer. We were seeing the battle, not the foe: sanctuary quelled emotional stress, energy classes supported energy, fear and loss were diminished through humour and joy, and mortality was no longer a stressor but a silent and ineffective presence.
This described what was happening, but we needed to understand why this was happening. The ‘Give it a Go’ atmosphere created a sense of coherence, control and optimism as well as comprehending themselves through the acceptance of others. Encouragement to try and risk provided opportunities to manage their cancer and the fears of their families. By contributing to WS through volunteering and supporting other members they were regaining a sense of purpose and meaning in their lives that made their recovery worthwhile. Further analysis identified self-worth as a sense of coherence at WS gained through social support and connection.