Objective: To explore the end-of-life experience of children with brain tumors and their families.
Design: Qualitative analysis of focus group interviews.
Setting: Children's Hospital, London Health Sciences Center.
Participants: Twenty-five parents of 17 children who had died of brain tumors.
Intervention: Parents participated in 3 semistructured focus group interviews.
Main outcome measures: Themes identified through thematic analysis of interview transcripts.
Results: Qualitative analysis identified 3 primary themes. (1) Parents described the dying trajectory of their child as characterized by progressive neurologic deterioration, with the loss of the ability to communicate as a turning point. Parental coping mechanisms included striving to maintain normality and finding spiritual strength through maintaining hope and in the resilience of their child. (2) Parental struggles during this phase included balancing competing responsibilities and speaking with their child about death. (3) Barriers to achieving a home death included suboptimal symptom management, financial and practical hardships, and inadequate community support. A fourth, secondary theme concerned the therapeutic benefits of the interview.
Conclusion: The neurologic deterioration that characterizes the dying trajectory of children with brain tumors may create significant challenges for health care professionals and the children's parents, supporting the need for increased awareness of the distinct issues in the palliative care of children with brain tumors and for early anticipatory guidance provided for families.