– By Daniel Ramcharran, Communications, BC SUPPORT Unit Northern Centre
Spring Hawes received a spinal cord injury fourteen years ago as the result of a biking accident, and has been a wheelchair user since then. She was chair of an access advocacy group for 7 years, a town councilor for 6 years, and has made a career in small business and entrepreneurialism. She is currently a Board Director for Interior Health Authority, and is completing a BA in English through Athabasca University. Spring has years of experience as a healthcare ‘consumer’, and is well acquainted with the strengths and weaknesses of the system. Recently, Spring incurred a severe chronic pressure injury resulting in 18 months of wound care, including 12 months of bed restriction. The wound was finally resolved by plastic surgery. The experience has given her a great interest in how pressure wounds are addressed and treated. Spring currently lives in Kelowna near her two grown children. She enjoys the outdoors, travel, literature and great food, among many other interests.
What drew you to being a patient partner on a research project?
I am always interested in participating in projects that are intended to improve something. In this case, I had a very difficult, lengthy experience with a pressure injury. That experience gave me insight into the challenges of preventing a pressure injury. I also experienced gaps in health care that I think are meaningful. I hope my sharing of my experience can inform positive changes in the way ‘we’ deal with pressure injury in people with spinal cord injury.
How many research projects have you been involved with? What were they?
This is my first!
What has been your role?
To this point, I have participated with the rest of the team in thinking about and planning research methods, identifying desired outcomes, considering knowledge translation avenues, creating the grant proposal, helping to design interviews and interview questions, and will assist in recruiting participants and analyzing data.
Title of project: Pressure Injury in people with lived experience of Spinal Cord Injury
Funded by: Canadian Institutes of Health Research Catalyst Grant: Patient-Oriented Research.
Summary of project:
This research project aims to explore the perspectives and priorities of individuals living with a spinal cord injury (SCI) who have experienced or are at risk of experiencing a pressure injury (PI). PI is one of the most serious complications of SCI and over 90% of sufferers will experience at least one PI in their lifetime. While the costs to the healthcare system are enormous, the burden to the individual is even greater as PIs contribute to further mobility challenges, social isolation, and potentially death. Little is known about how persons with SCI experience PI and how they interact with the healthcare system.
A pressure injury is defined as localized damage to the skin and tissues, commonly occurring as a result of intense and/or prolonged pressure or shear. While pressure injuries occur in many patient populations, pressure injuries in those with a SCI can be catastrophic, giving rise to enormous healthcare costs and significant morbidity and mortality. Despite their frequency, the experiences of those living with pressure injury and SCI are not well understood.
Specifically, we plan to:
- Examine and document the experiences of pressure injury in adults with traumatic SCI; and
- Develop patient-driven priorities to catalyze and inform future patient-oriented research (POR)
The findings of this research will contribute valuable insights on the perspectives of those with lived experience of pressure injury and SCI and will generate actionable findings that can inform the care and support of Canadians with SCI and the development of future patient-driven POR.