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

Abstract

Objective To explore the experience of caregivers of patients with digestive cancer and to compare the perspectives of patients and caregivers. Methods Caregiver-patient dyads were enrolled in this mixed-methods study. The Caregiver Reaction Assessment (CRA) and the Supportive Care Needs Survey for Partners and Caregivers (SCNS-PC) questionnaires were distributed to caregivers. Semi-structured interviews with the dyads were conducted. Results Thirty-two caregivers completed the questionnaires. Responses showed high self-esteem, schedule burden, and a need for care and information services. Ten dyads participated in the interviews. Three themes emerged from the caregiver’s interviews: illness is an upheaval; loneliness and helplessness are experienced; caring is a natural role with positive outcomes. Four themes emerged from patient's interviews: the caregiver naturally assumes the role and gets closer; he is the patient's anchor; his life is disrupted; anxiety and guilt accompany the desire to protect him. In comparing patient and caregiver data, we identified many similarities. The main theme of disagreement was their relationship. Conclusions Caregiver care does not appear to be optimal, particularly in terms of their need for information. Even though the patients have a fairly good representation of their caregiver’s experience, their opinion and their communication still need to be considered.