When parents face the death of their child: a nationwide cross-sectional survey of parental perspectives on their child's end-of life care.

Détails

Ressource 1Télécharger: BIB_44AABFE51111.P001.pdf (1179.04 [Ko])
Etat: Public
Version: de l'auteur
ID Serval
serval:BIB_44AABFE51111
Type
Article: article d'un périodique ou d'un magazine.
Collection
Publications
Titre
When parents face the death of their child: a nationwide cross-sectional survey of parental perspectives on their child's end-of life care.
Périodique
Bmc Palliative Care
Auteur(s)
Zimmermann K., Bergstraesser E., Engberg S., Ramelet A.S., Marfurt-Russenberger K., Von der Weid N., Grandjean C., Fahrni-Nater P., Cignacco E.
Collaborateur(s)
PELICAN Consortium
Contributeur(s)
Ansari M., Aebi C., Baer R., Popovic MB., Bernet V., Brazzola P., Bucher HU., Buder R., Cagnazzo S., Dinten B., Dorsaz A., Elmer F., Enriquez R., Finkbeiner G., Frey B., Frey U., Greiner J., Hassink RI., Keller S., Kretschmar O., Kröll J., Laubscher B., Leibundgut K., Malär R., Meyer A., Stuessi C., Nelle M., Neuhaus T., Niggli F., Perrenoud G., Pfammatter JP., Plecko B., Rupf D., Sennhauser F., Stade C., Steinlin M., Stoffel L., Thomas K., Vonarburg C., von Vigier R., Wagner B., Wieland J., Wernz B.
ISSN
1472-684X (Electronic)
ISSN-L
1472-684X
Statut éditorial
Publié
Date de publication
2016
Peer-reviewed
Oui
Volume
15
Numéro
1
Pages
30
Langue
anglais
Notes
Publication types: Journal Article ; Research Support, Non-U.S. Gov't
Publication Status: epublish
Résumé
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.
Mots-clé
Attitude of Health Personnel, Attitude to Death, Cross-Sectional Studies, Death, Decision Making, Female, Humans, Infant, Newborn, Male, Parents/psychology, Pediatrics/standards, Perception, Resuscitation Orders/psychology, Surveys and Questionnaires, Switzerland, Terminal Care/standards
Pubmed
Web of science
Open Access
Oui
Création de la notice
10/03/2016 18:05
Dernière modification de la notice
20/08/2019 13:49
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