Physical Symptoms of Children Receiving Pediatric Hospice Care at Home During the Last Week of Life

Purpose/Objectives: To identify symptoms of greatest parental concern on the last day and during the last week of their children's lives, the five most common symptoms of parental concern, and symptom-management strategies used during the last week of the children's lives. Research Approach: Descriptive, exploratory, and retrospective. Setting: A pediatric hospice program in St. Louis, MO. Participants: Convenience sampling of 28 bereaved parents. Methodologic Approach: The Krippendorff method for semantical content analysis of data collected from semistructured telephone interviews with parents. Main Research Variables: Parents' perceptions of their children's symptoms and symptom-management strategies. Findings: On the last day of life, change in the children's breathing was the most frequent symptom of concern. During the last week of life, loss of motor function was the most frequent symptom of concern. Physical comfort actions and use of pharmaceutical agents were the strategies perceived as most helpful in managing symptoms. Conclusions: The study is the first to document parents' perceptions of their children's symptoms and of symptom-management strategies during the last week of life while receiving care in the home from staff of the pediatric hospice program. Interpretation: Symptoms experienced by dying children during the last week of life and symptom-management strategies used by pediatric hospice programs to support dying children and their families have not been well described. Additional research is warranted to further identify pediatric symptoms at the end of life and effective symptom-management strategies.