title: Listening to parents: The role of symptom perception in pediatric palliative home care.
abstract: OBJECTIVE
  This study analyzes symptom perception by parents and healthcare professionals and the quality of symptom management in a pediatric palliative home care setting and identifies which factors contribute to a high quality of palliative and end-of-life care for children.
  
  
  METHODS
  In this retrospective, cross-sectional study, parents were surveyed at the earliest three months after their child's death. All children were cared for by a specialized home pediatric palliative care team that provides a 24/7 medical on-call service. Questionnaires assessed symptom prevalence and intensity during the child's last month of life as perceived by parents, symptom perception, and treatment by medical staff. The responses were correlated with essential palliative care outcome measures (e.g., satisfaction with the care provided, quality-of-life of affected children and parents, and peacefulness of the dying phase).
  
  
  RESULTS
  Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures could be treated more successfully than other symptoms. Successful symptom perception was achieved in most cases and predicted the quality of symptom treatment (R 2, 0.612). Concordant assessment of symptom severity between parents and healthcare professionals (HCPs) improved the satisfaction with the care provided (p = 0.037) as well as the parental quality-of-life (p = 0.041). Even in cases with unsuccessful symptom control, parents were very satisfied with the SHPPC team's care (median 10; numeric rating scale 0-10) and rated the child's death as highly peaceful (median 9). Significance of the results: The quality and the concordance of symptom perception between parents and HCPs essentially influence parental quality-of-life as well as parental satisfaction and constitute a predictive factor for the quality of symptom treatment and palliative care.
authors.affiliation: Coordination Center for Pediatric Palliative Care,Dr. von Haunersches Kinderspital,Ludwig-Maximilians-University,Munich,Germany.
authors.forename: René
authors.initials: R
authors.lastname: Vollenbroich
authors.affiliation: Service de Soins Palliatifs,Centre Hospitalier Universitaire Vaudois (CHUV),University of Lausanne,Lausanne,Switzerland.
authors.forename: Gian Domenico
authors.initials: GD
authors.lastname: Borasio
authors.affiliation: Coordination Center for Pediatric Palliative Care,Dr. von Haunersches Kinderspital,Ludwig-Maximilians-University,Munich,Germany.
authors.forename: Ayda
authors.initials: A
authors.lastname: Duroux
authors.affiliation: Coordination Center for Pediatric Palliative Care,Dr. von Haunersches Kinderspital,Ludwig-Maximilians-University,Munich,Germany.
authors.forename: Monika
authors.initials: M
authors.lastname: Grasser
authors.affiliation: Interdisciplinary Center for Palliative Medicine,Ludwig-Maximilians-University Munich,Munich,Germany.
authors.forename: Monika
authors.initials: M
authors.lastname: Brandstätter
authors.affiliation: Coordination Center for Pediatric Palliative Care,Dr. von Haunersches Kinderspital,Ludwig-Maximilians-University,Munich,Germany.
authors.forename: Monika
authors.initials: M
authors.lastname: Führer
mesh_terms: D000328:Adult; D003430:Cross-Sectional Studies; D003643:Death; D004417:Dyspnea / Q000175:diagnosis / Q000523:psychology; D005260:Female; D006699:Home Care Services / Q000592:standards; D006801:Humans; D008297:Male; D010146:Pain / Q000175:diagnosis / Q000523:psychology; D010166:Palliative Care / Q000379:methods* / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D010372:Pediatrics / Q000379:methods; D010465:Perception; D011788:Quality of Life / Q000523:psychology; D012189:Retrospective Studies; D011795:Surveys and Questionnaires; D063189:Symptom Assessment / Q000523:psychology*
keywords: End-of-life symptoms; Pediatric palliative home care; Symptom perception