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

Abstract

Purpose This study aims to explore the experience of caregivers of patients with digestive cancer and to compare the perspectives of patients and caregivers. Methods This was a mixed-methods study on caregiver-patient dyads. Semi-structured interviews with caregivers and their patients were conducted to explore each perspective. Two questionnaires were distributed to caregivers, the Caregiver Reaction Assessment (CRA) and the Supportive Care Needs Survey for Partners and Caregivers (SCNS-PC). Results Thirty-two caregivers completed the questionnaires. The CRA showed great self-esteem (3.8 +/- 0.7) and the burden on schedule (3.3 +/- 1). The SCNS-PC showed a need for healthcare service and information (2.0 +/- 0.8). Ten dyads participated in semi-structured interviews. Three themes emerged from caregiver’s interviews: the illness is an upheaval; the feeling of loneliness and helplessness and its consequences; a natural role with positive outcomes. Four themes emerged from the patient's side: the caregiver naturally takes on this role and gets closer; the caregiver is the patient's anchor; the disruption of the caregiver's life; anxiety, guilt, and the desire to protect the caregiver. Comparison of the data identifies many similarities between patients and caregivers, as well as discrepancies with the main theme being their relationship. Conclusion This demonstrates the importance of caring for caregivers and considering them in the context of their relationship with the patient to better understand their experience.