A Qualitative Investigation of How to Integrate Primary Caregiver-Reported Outcomes Across the Colorectal Cancer Journey

Project Summary

Primary caregivers are 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 ongoing 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.

Project Findings

Caregiver-Reported Outcomes’ development, assessment, and implementation will benefit from recognizing:

  • The diversity of caregivers
    • Multiple different family and friends are involved in caregiving, providing different support, and experiencing different challenges
  • The diversity of care, including:
    • specialized care (e.g., help with ostomy bag)
    • practical support (e.g., transportation)
    • emotional support – often unrecognized / “invisible.”
    • spiritual support – often unrecognized / “invisible.”
  • Shifting self-identity & difficulty engaging in self care
    • When caregivers spend more time caring and advocating for the other and less time on self-care, this can:
      • shift their sense of self
      • contribute to emotional distress
      • make it harder for them to give care
  • The range of emotional challenges
    • Emotional distress or fear were prominent emotional challenges in relation to cancer treatment
    • But, as part of their caregiving, caregivers might face other emotional challenges, e.g., interpersonal conflict and grief
  • Managing and collecting information
    • This was an often self-taught and evolving form of advocacy
    • Learning and doing this helped some caregivers cope, but sometimes also contributed to feeling overwhelmed
  • Employment and financial disruption
  • Ostomy preparation, management, and adapting to life changes
  • Conflicting perspectives about sharing caregiver challenges with the patient
    • Some believe that transparency is important to support the caregiver
    • Others believe that patients knowing caregivers’ challenges can contribute to caregiver burden
  • Clinician time and resource limitations
  • Available resources and support for caregivers
    • e.g., do not ask the questions if there are no supports to be offered!

Publications

Howard, A.F.; Lynch, K.; Beck, S.; Torrejón, M.-J.; Avery, J.; Thorne, S.; Porcino, A.; De Vera, M.; Lambert, L.; Wolff, A.; McDonald, M.; Lee, J.; Hedges, P.; McKenzie, M. At the Heart of It All: Emotions of Consequence for the Conceptualization of Caregiver-Reported Outcomes in the Context of Colorectal Cancer. Curr. Oncol. 2021, 28, 4184-4202. https://doi.org/10.3390/curroncol28050355

Howard, A.F., Torrejón, MJ., Lynch, K. et al. To share or not to share: communication of caregiver-reported outcomes when a patient has colorectal cancer. J Patient Rep Outcomes 6, 13 (2022). https://doi.org/10.1186/s41687-022-00418-1

Presentations

Apr 2021: Oncology Nursing Society (ONS) Annual Research Forum

May 2021: Canadian Centre for Applied Research in Cancer Control (ARCC) Conference

May 2021: The 22nd International Psycho-Oncology Society World Congress (IPOS 2021)

June 2021: Canadian Association of Psychosocial Oncology (CAPO) Conference

June 2021: Multinational Association of Supportive Care in Cancer (MASCC) Meeting

Sept-Oct 2021: Canadian Association of Radiation Oncology (CARO) Annual Scientific Meeting

Oct 2021: The International Society for Quality of Life Research (ISOQOL) Annual Conference

Oct 2021: Canadian Association of Nurses in Oncology (CANO) Annual Conference

Nov 2021: BC Cancer Summit 2021

Apr 2022: Oncology Nursing Society (ONS) Annual Research Forum

This project is part of the Patient-Centred Measurement Cluster.

Project Lead

Michael McKenzie, Co-PI
Amanda Fuchsia Howard, Co-PI
Sally Thorne
Angela Wolff
Antony Porcino
Shelley Pennington
Melanie McDonald
Joyce Lee
Janine Davies
Leah Lambert
Paul Yong
Mary De Vera
Maria Jose Torrejon
Kelsey Lynch
Scott Beck
Jonathan Avery
Penelope Hedges
Mogens Gade
Leah Wong
Paul Smeltzer

Video | Caring for Caregivers

Our team member, Scott Beck, along with BC Cancer Clinical Nurse Specialist colleague Jagbir Kaur, helped supervise Ashley Degner, Garret MacMaster, Kaitlyn Schrauwen, Sharlene Campbell and Maddy Holford—all UBC Okanagan undergraduate nursing students—who used the findings from our “To Share or Not to Share” manuscript to complete a capstone project for their nursing leadership course.

For their course, they were tasked with designing a Knowledge Translation strategy aimed at direct care nurses. BC Cancer will review the recommendations to consider incorporating them in future work to implement patient-centered models of care.

Webinar | Considerations for the assessment and sharing of caregiver reported outcomes

If you’re in a rush, check out these snack-size highlights:

The most important thing for caregivers
Duration: 0:47

Acknowledging caregiver work & integrating caregiver-reported outcomes
Duration: 0:32

Some benefits of engaging groups of patient partners
Duration: 0:58

Watch the full webinar:

Duration: 19:18