Coloured illustration of a map and different provinces, with location pins scattered about. It is a promotional graphic for casebook projects of patient and community engagement in health research.

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.

Caregiver-reported outcomes across the colorectal cancer journey

Project team members include:

  • Principal investigator: Fuchsia Howard and Michael McKenzie
  • Research manager: Kelsey Lynch
  • Engagement coordinator: Maria-Jose Torrejon
  • Team members: Paul Smeltzer and Penelope Hedges

What is this project about?

Primary caregivers are key family members or friends who take on the work of helping patients throughout their cancer journey with their physical, emotional, disease management and practical needs.

Because the cancer journey includes a long series of stressful events, primary caregivers have high levels of on-going caregiver burden, including emotional challenges, work and income, and their own health problems.

  • Which of these outcomes matter most to primary caregivers?
  • When and how is best to perform screening for these caregiver-reported outcomes (CROs)?
  • What assistance might be most helpful?

To answer these questions, we interviewed patients with colorectal cancer, their primary caregivers, as well as health care professionals from nursing, medicine, and social work who are involved in the care of colorectal cancer patients.

Who did you partner with for your project?

We partnered with two patient partners and two caregiver partners who had lived experience.

How did partners with lived experience contribute during key stages of your research project?

Research stage

Knowledge translation

How we partnered

One of our patient partners co-presented at the International Society for Quality of Life Research Annual Conference in 2021. Our presentation was part of a panel presentation organized by the BC SUPPORT Unit, Patient-Centred Measurement Cluster.

Research stage

Throughout the project

How we partnered

Our patient and caregiver partners (individuals with lived experience), clinicians, and multidisciplinary stakeholders contributed as equal team members throughout the research.

To support a collaborative level of engagement grounded in clear and horizontal communication, we held in-depth discussions during bi-monthly full-team meetings to involve patient and caregiver partners, as well as knowledge users, in all research phases.

Additionally, patient and caregiver partners participated in a monthly virtual meeting facilitated by the Engagement Coordinator. These meetings sought to build a welcoming space to develop a common understanding of expectations, roles, and responsibilities, and to promote shared decision-making processes that respected and honoured partners’ experiences and opinions.

In the partner meetings, we discussed opportunities for engagement and partners provided feedback on different research activities.

What’s your advice for someone who wants to collaborate with partners with lived experience?

To identify areas of improvement and additional supports for effective and meaningful collaboration, interim evaluation of patient and stakeholder engagement are crucial.

Our interim engagement survey results provided specific suggestions for improvement. We implemented these changes to improve communication with all team members and provide the opportunity for more meaningful engagement for everyone.

How can someone learn more about your project?

Acknowledgments and thanks

  • BC SUPPORT Unit

This project was collected as part of a casebook that demonstrates patient-oriented research in BC.

Explore the casebook