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

Autor: Von Der Weid, Nicolas, Bergstraesser, Eva, Fahrni-Nater, Patricia, Engberg, Sandra, Zimmermann, Karin, Steinlin, Maja, Wagner, Bendicht Peter, Grandjean, Chantal, Leibundgut, Kurt, Paediatric End-Of-LIfe CAre Needs, PELICAN, Nelle, Mathias, Cignacco, Eva, Aebi, Christoph, Pfammatter, Jean-Pierre, Marfurt-Russenberger, Katrin, Ramelet, Anne-Sylvie
Přispěvatelé: PELICAN Consortium, 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., University of Zurich, Cignacco, Eva
Rok vydání: 2015
Předmět:
Male
Parents
Palliative care
Cross-sectional study
2700 General Medicine
Pediatrics
Pediatrics/standards
Terminal Care/standards
0302 clinical medicine
Questionnaire survey
Resuscitation Orders/psychology
Surveys and Questionnaires
Health care
610 Medicine & health
Resuscitation Orders
Medicine(all)
education.field_of_study
Terminal Care
ddc:618
Questionnaire
General Medicine
humanities
Death
030220 oncology & carcinogenesis
Female
Erratum
End-of-life care
Switzerland
Parents/psychology
Research Article
Attitude of Health Personnel
Attitude to Death
Cross-Sectional Studies
Decision Making
Humans
Infant
Newborn
Perception
medicine.medical_specialty
Population
Parental perspectives
MEDLINE
03 medical and health sciences
030225 pediatrics
medicine
education
Estimation
business.industry
Paediatrics
10027 Clinic for Neonatology
10036 Medical Clinic
Family medicine
business
End-of-life
Zdroj: BMC Palliative Care
Bmc Palliative Care, vol. 15, no. 1, pp. 30
BMC Palliative Care, Vol. 15 (2016) P. 30
Zimmermann, Karin; Bergstraesser, Eva; Engberg, Sandra; Ramelet, Anne-Sylvie; Marfurt-Russenberger, Katrin; Von der Weid, Nicolas; Grandjean, Chantal; Fahrni-Nater, Patricia; Cignacco, Eva; Aebi, Christoph; Leibundgut, Kurt; Nelle, Mathias; Pfammatter, Jean-Pierre; Steinlin, Maja; Wagner, Bendicht Peter; Paediatric End-of-LIfe CAre Needs, PELICAN (2016). When parents face the death of their child: a nationwide cross-sectional survey of parental perspectives on their child's end-of life care. BMC Palliative Care, 15(30), p. 30. BioMed Central 10.1186/s12904-016-0098-3
ISSN: 1472-684X
DOI: 10.1186/s12904-016-0098-3
Popis: 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. Electronic supplementary material The online version of this article (doi:10.1186/s12904-016-0098-3) contains supplementary material, which is available to authorized users.
Databáze: OpenAIRE
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