Existential experiences and perceptions of death among children with terminal cancer: An interpretative qualitative study

Abstract

Background: Exploring the experience and understanding of death in children with terminal cancer is important to provide them with appropriate care. However, most studies have focused on the perspectives of parents and healthcare professionals, and few have focused on the end-of-life experiences of children. Aim: To advance the understanding of end-of-life experiences and perceptions of death in children with cancer. Design: Interpretative qualitative study using semi-structured interviews. Data were analyzed using reflexive thematic analysis. Setting/participants: The study was conducted at the department of oncological surgery, Children’s Hospital, Zhejiang University School of Medicine. Ten children aged 8–17 with terminal cancer were included in the study. Results: Four major themes (and eight sub-themes) were identified from the findings: (1) helplessness in the face of death (loneliness, loss of control); (2) desire to connect with the world they left (reluctantly to be forgotten, sense of self-worth); (3) perceptions and attitudes toward death (separating from loved ones, embracing death); (4) expectations of future life (promoting comfort, fulfilling wishes). Conclusions: Children with terminal cancer have a strong sense of loneliness and a desire to connect with the world they have left behind. Differences in children’s perceptions and attitudes about death suggest that healthcare professionals should focus on their experiences and needs and provide personalized palliative care services to children and their families to improve their quality of life.