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

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!