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

Abstract

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.

Effect of Narrative Nursing Intervention Based on Targeted Nursing Intervention on Anxiety and Nursing Satisfaction of Patients with Malignant Tumors Undergoing Chemotherapy

“…Humanity care is the core spirit of the nursing discipline, and empathy is necessary for nursing personnel to perform nursing interventions. Narrative nursing refers to the way in which nursing personnel view the problem through the patients' perspective and discover the key points of individual care to propose targeted care options for the patients that realistically address their distress and problems [ 20 , 21 ]. Patients with malignant tumors usually need to receive long-term chemotherapy and are overwhelmed by the body suffering caused by the disease, the toxic side effects from chemotherapy, and the time and money spent on treatment.…”

Occupational and Financial Setbacks in Caregivers of People with Colorectal Cancer: Considerations for Caregiver-Reported Outcomes

“…The protocol was approved by the harmonized BC Cancer and University of British Columbia Research Ethics Board. Further details of study methods have been published elsewhere [ 31 , 32 ].…”

“…What would you like healthcare providers to do with this information? What type and when would support be helpful/unhelpful to you [ 31 ]? We asked patients similar questions in terms of what they perceived to be caregivers’ experiences and needs.…”

The experience of being a caregiver of patients with digestive cancer, from patients and caregivers’ perception: A mixed study

“…The limited literature on this topic has shown that patients with head and neck cancer felt that their care was a considerable burden and that it was very hard for their caregiver [13]. To date, few studies have focused on caregivers of patients with digestive cancers but Mosher showed that caregivers and colorectal cancer patients failed to identify the same challenges that caregivers face [14][15][16].…”