Characteristics of caregiver perceptions of end‐of‐life caregiving experiences in cancer survivorship: in‐depth interview study

Abstract

Little is known about caregiver experiences during the end-of-life period. Our objective was to characterize caregiver perceptions of their experiences in cancer survivorship with special reference to the end-of-life stage considering depression in bereavement. Qualitative research using in-depth interviews of 34 caregivers from two palliative care units in Japan. Data were analyzed inductively using framework analysis. Depression and personality traits were measured using the Center for Epidemiological Studies Depression (CES-D) and Sense of Coherence (SOC) scales, respectively. Caregiver perceptions were characterized along two axes. One axis involved four caregiver-cancer patient relationships: strengthening, reconstruction, intimacy-maintained, and estrangement-maintained. The core concept was transformation of relationships: caregivers reappraised aspects of caregiver-patient interactions through caregiving. The other axis involved subjective caregiving experiences divided into five concepts: spontaneity of care, discussing death, sympathy for patient emotions, impressions on first witnessing death, and introspective reflections in bereavement. Strengthening and reconstruction relationships appeared similar among the four relationship types, but only the former tended to overcompensate by sacrificing private time. Although median CES-D scores in each relationship type were under the cutoff for possible depression, four of eight caregivers suspected to have depressive tendencies belonged to the strengthening type. The mean SOC score for all caregivers was intermediate relative to scores previously reported in Japanese studies. While caregivers' subjective experiences can be classified, their relationship to depression in bereavement needs future research. The present findings indicate that caregivers should also be considered in clinicians' views of cancer survivorship.