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.

Psychological factors and Quality of Life in children with palliative needs: A predictive analysis

“…Childhood and adolescence are life stages with many developmental changes and yet it remains unclear how these changes in uence QoL in young people, particularly for those suffering chronic illness (30). On the one hand, it may be a re ection of the adolescent's greater cognitive capacity for logical and abstract thinking, which leads to greater questioning of one's own values and beliefs, and a better understanding of the disease may be confronted with more illness-related stressors than in children (31,32). Children aged 7 to 11 also use their reasoning skills more successfully with concrete information than with abstract concepts (33), such as pQoL.…”

Evaluating quality of life in pediatric palliative care: a cross-sectional analysis of children’s and parents’ perspectives

“…Other studies do find a direct relationship with the diagnosis of the disease [ 18 , 33 ], something that the researchers assumed was difficult to observe in our study due to the large number of diagnoses and the size of the sample. Although it is not a variable that has been significant in our model, some studies show the importance of the time since diagnosis, which can influence the perception of QoL in both directions: decreasing it because they have memories of a better previous life that they want to recover or increasing it, since a longer duration of the disease gives more time for psychological adaptation, but may also lead to an accumulation of negative illness-related consequences [ 34 – 36 ].…”