Parents and clinicians caring for children with brain tumors may experience significant challenges near the end of life due to the neurologic deterioration that often occurs in these patients. Shayna Zelcer, M.D., F.R.C.P.C., of Children's Hospital, London Health Sciences Center, Ontario, Canada, and colleagues conducted a qualitative analysis of focus group interviews involving 25 parents of 17 children who had died of brain tumors.
The analysis identified three primary themes. The first was that parents described their child's dying path as characterized by progressive neurologic deterioration. Loss of communication ability was a key turning point, and parents coped by striving to maintain normality and finding strength through hope and the resilience of their child. The second theme identified common parental struggles: balancing competing responsibilities and talking with their children about death. The third theme was that parents who wanted their child to die at home faced barriers, including inadequate symptom control, financial and practical hardships and a lack of community support.
"We hope this report will increase the awareness of health care professionals concerning the challenges these families face and the need for anticipatory guidance and education of patients and families early in the course of illness," the authors conclude.
The research appears in Archives of Pediatrics & Adolescent Medicine.
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