title: Parents' experiences of pediatric palliative care and the impact on long-term parental grief.
abstract: BACKGROUND
  Approximately 25% of children diagnosed with cancer eventually die. Losing a child puts parents at increased risk for developing psychological problems.
  
  
  OBJECTIVE
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Paediatric Oncology/Haematology, Erasmus MC-Sophia Children's Hospital, Rotterdam, The Netherlands. Electronic address: i.vandergeest@erasmusmc.nl.
authors.forename: Ivana M M
authors.initials: IM
authors.lastname: van der Geest
authors.affiliation: School of Health Sciences, University of Southampton, Southampton, United Kingdom.
authors.forename: Anne-Sophie E
authors.initials: AS
authors.lastname: Darlington
authors.affiliation: Department of Paediatric Oncology/Haematology, Erasmus MC-Sophia Children's Hospital, Rotterdam, The Netherlands.
authors.forename: Isabelle C
authors.initials: IC
authors.lastname: Streng
authors.affiliation: Department of Paediatric Oncology/Haematology, Erasmus MC-Sophia Children's Hospital, Rotterdam, The Netherlands.
authors.forename: Erna M C
authors.initials: EM
authors.lastname: Michiels
authors.affiliation: Department of Paediatric Oncology/Haematology, Erasmus MC-Sophia Children's Hospital, Rotterdam, The Netherlands.
authors.forename: Rob
authors.initials: R
authors.lastname: Pieters
authors.affiliation: Department of Paediatric Oncology/Haematology, Erasmus MC-Sophia Children's Hospital, Rotterdam, The Netherlands.
authors.forename: Marry M
authors.initials: MM
authors.lastname: van den Heuvel-Eibrink
mesh_terms: D000328:Adult; D003142:Communication; D003266:Continuity of Patient Care; D003430:Cross-Sectional Studies; D005260:Female; D006117:Grief; D006801:Humans; D008297:Male; D008875:Middle Aged; D015999:Multivariate Analysis; D009369:Neoplasms / Q000628:therapy; D010166:Palliative Care / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D010372:Pediatrics; D012189:Retrospective Studies; D011795:Surveys and Questionnaires
keywords: Cancer; children; palliative care; parental grief; symptom management