title: When parents face the death of their child: a nationwide cross-sectional survey of parental perspectives on their child's end-of life care.
abstract: BACKGROUND
  Parents facing the death of their child have a strong need for compassionate professional support. Care services should be based on empirical evidence, be sensitive to the needs of the families concerned, take into account the heterogeneity within the medical field of paediatrics, and fit into the local health care system. We need to better understand the perspectives of parents facing the death of their child in order to guide further development and evaluation of specialised paediatric palliative and end-of-life (EOL) care services.
  
  
  METHODS
  Questionnaire survey to assess the EOL care perspectives of a Swiss population-based sample of bereaved parents who had lost a child due to a cardiac, neurological or oncological condition, or during the neonatal period in the years 2011 or 2012. The parental perspective was assessed with a newly developed and tested instrument that was structured according to six evidence-based quality domains. Responses regarding parental experiences and perceived satisfaction are described. Differences between the four diagnostic groups are analysed using a generalized estimation equation to account for the dyadic data structure.
  
  
  RESULTS
  Of 307 eligible families, 267 could be contacted and 135 (51%) consented to participate in this questionnaire survey. Our findings show positive parental experiences of their child's EOL care and high perceived satisfaction with the care their child received. Parents of a child with cancer rated their experiences highest in most of the six quality domains and reported the highest satisfaction with care. The lowest scores were mainly reported by parents from the neurology group, with the exception of the shared decision making domain, where parents of neonates reported significantly less positive experiences.
  
  
  CONCLUSIONS
  Although positive in general, our study results suggest some areas for improvement. The integration of specialised paediatric palliative care has the potential to minimise lost opportunities to support and assist parents.
authors.affiliation: Institute of Nursing Science, University of Basel, Bernoullistrasse 28, 4056, Basel, Switzerland. karin.zimmermann@unibas.ch.|Department of Paediatrics, Inselspital Bern University Hospital, Bern, Switzerland. karin.zimmermann@unibas.ch.
authors.forename: Karin
authors.initials: K
authors.lastname: Zimmermann
authors.affiliation: Paediatric Palliative Care, University Children's Hospital Zurich, Steinwiesstrasse 75, 8032, Zurich, Switzerland. eva.bergstraesser@kispi.uzh.ch.
authors.forename: Eva
authors.initials: E
authors.lastname: Bergstraesser
authors.affiliation: School of Nursing, University of Pittsburgh, 3500 Victoria Street, Pittsburgh, PA, 15261, USA. sje1@pitt.edu.
authors.forename: Sandra
authors.initials: S
authors.lastname: Engberg
authors.affiliation: Institute of Higher Education and Research in Healthcare - IUFRS, University of Lausanne, Route de la Corniche 10, 1010, Lausanne, Switzerland. anne-sylvie.ramelet@chuv.ch.|Paediatric Department, Lausanne University Hospital CHUV, Rue du Bugnon 21, 1011, Lausanne, Switzerland. anne-sylvie.ramelet@chuv.ch.
authors.forename: Anne-Sylvie
authors.initials: AS
authors.lastname: Ramelet
authors.affiliation: Institute of Nursing Science, University of Basel, Bernoullistrasse 28, 4056, Basel, Switzerland. katrin.marfurt-russenberger@unibas.ch.
authors.forename: Katrin
authors.initials: K
authors.lastname: Marfurt-Russenberger
authors.affiliation: Department of Paediatric Haematology-Oncology, University Children's Hospital UKBB, Spitalstrasse 33, 4056, Basel, Switzerland. nicolas.vonderweid@ukbb.ch.
authors.forename: Nicolas
authors.initials: N
authors.lastname: Von der Weid
authors.affiliation: Paediatric Department, Lausanne University Hospital CHUV, Rue du Bugnon 21, 1011, Lausanne, Switzerland. chantal.grandjean@chuv.ch.
authors.forename: Chantal
authors.initials: C
authors.lastname: Grandjean
authors.affiliation: Paediatric Palliative Care Team, Lausanne University Hospital CHUV, Rue du Bugnon 21, 1011, Lausanne, Switzerland. patricia.fahrni-nater@chuv.ch.
authors.forename: Patricia
authors.initials: P
authors.lastname: Fahrni-Nater
authors.affiliation: Institute of Nursing Science, University of Basel, Bernoullistrasse 28, 4056, Basel, Switzerland. eva.cignacco@unibas.ch.|Research in Midwifery, University of Applied Sciences Bern, Health Division, Bern, Switzerland. eva.cignacco@unibas.ch.
authors.forename: Eva
authors.initials: E
authors.lastname: Cignacco
mesh_terms: D001291:Attitude of Health Personnel; D001293:Attitude to Death; D003430:Cross-Sectional Studies; D003643:Death; D003657:Decision Making; D005260:Female; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D010290:Parents / Q000523:psychology*; D010372:Pediatrics / Q000592:standards; D010465:Perception; D016414:Resuscitation Orders / Q000523:psychology; D011795:Surveys and Questionnaires; D013557:Switzerland; D013727:Terminal Care / Q000592:standards*