Parents' experiences of pediatric palliative care and the impact on long-term parental grief

Context Approximately 25% of children diagnosed with cancer eventually die. Losing a child puts parents at increased risk for developing psychological problems. Objectives To explore parents' perceptions of the interaction with health care professionals (communication, continuity of care, and parental involvement) and symptom management during the pediatric palliative phase, and to investigate the influence on long-term grief in parents who lost a child to cancer. Methods A total of 89 parents of 57 children who died of cancer between 2000 and 2004 participated in this retrospective cross-sectional study by completing a set of questionnaires measuring grief (Inventory of Traumatic Grief), parents' perceptions of the interaction with health care professionals (communication, continuity of care, and parental involvement), and symptom management during the palliative phase. Care was assessed on a five point Likert scale (1 = disagree and 5 = agree). Results Parents highly rated communication (4.6 ± 0.6), continuity of care (4.3 ± 0.6), and parental involvement (4.6 ± 0.7) during the palliative phase. Parents' most often reported physical and psychological symptoms of their child during the palliative phase were fatigue (75%), pain (74%), anxiety to be alone (52%), and anger (48%). Higher ratings of parents on communication (β = -9.08, P = 0.03) and continuity of care (β = -11.74, P = 0.01) were associated with lower levels of long-term parental grief. The severity of the child's dyspnea (β = 2.96, P = 0.05), anxiety to be alone (β = 4.52, P < 0.01), anxiety about the future (β = 5.02, P < 0.01), anger (β = 4.90, P < 0.01), and uncontrolled pain (β = 6.60, P < 0.01) were associated with higher levels of long-term parental grief. Multivariate models combining the interaction with health care professionals and symptom management showed a significant influence of both aspects on long-term parental grief. Conclusion Both interaction with health care professionals, especially communication and continuity of care, and symptom management in children dying of cancer are associated with long-term parental grief levels.