Current Oncology (Oct 2021)

At the Heart of It All: Emotions of Consequence for the Conceptualization of Caregiver-Reported Outcomes in the Context of Colorectal Cancer

  • A. Fuchsia Howard,
  • Kelsey Lynch,
  • Scott Beck,
  • Maria-José Torrejón,
  • Jonathan Avery,
  • Sally Thorne,
  • Antony Porcino,
  • Mary De Vera,
  • Leah Lambert,
  • Angela Wolff,
  • Melanie McDonald,
  • Joyce Lee,
  • Penelope Hedges,
  • Michael McKenzie

DOI
https://doi.org/10.3390/curroncol28050355
Journal volume & issue
Vol. 28, no. 5
pp. 4184 – 4202

Abstract

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Colorectal cancer (CRC) can be demanding for primary caregivers; yet, there is insufficient evidence describing the caregiver-reported outcomes (CROs) that matter most to caregivers. CROs refer to caregivers’ assessments of their own health status as a result of supporting a patient. The study purpose was to describe the emotions that were most impactful to caregivers of patients with CRC, and how the importance caregivers attribute to these emotions changed from diagnosis throughout treatment. Guided by qualitative Interpretive Description, we analyzed 25 caregiver and 37 CRC patient interviews, either as individuals or as caregiver-patient dyads (six interviews), using inductive coding and constant comparative techniques. We found that the emotional aspect of caring for a patient with CRC was at the heart of caregiving. Caregiver experiences that engendered emotions of consequence included: (1) facing the patient’s life-changing diagnosis and an uncertain future, (2) needing to be with the patient throughout the never-ending nightmare of treatment, (3) bearing witness to patient suffering, (4) being worn down by unrelenting caregiver responsibilities, (5) navigating their relationship, and (6) enduring unwanted change. The broad range of emotions important to caregivers contributes to comprehensive foundational evidence for future conceptualization and the use of CROs.

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