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

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

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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.

Item Type:

Journal Article (Original Article)

Division/Institute:

04 Faculty of Medicine > Department of Gynaecology, Paediatrics and Endocrinology (DFKE) > Clinic of Paediatric Medicine
04 Faculty of Medicine > Department of Cardiovascular Disorders (DHGE) > Clinic of Cardiology
04 Faculty of Medicine > Department of Gynaecology, Paediatrics and Endocrinology (DFKE) > Clinic of Paediatric Medicine > Neonatology
04 Faculty of Medicine > Department of Gynaecology, Paediatrics and Endocrinology (DFKE) > Clinic of Paediatric Medicine > Paediatric Haematology/Oncology
04 Faculty of Medicine > Department of Gynaecology, Paediatrics and Endocrinology (DFKE) > Clinic of Paediatric Medicine > Paediatric Infectiology
04 Faculty of Medicine > Department of Gynaecology, Paediatrics and Endocrinology (DFKE) > Clinic of Paediatric Medicine > Neuropaediatrics

UniBE Contributor:

Aebi, Christoph; Leibundgut, Kurt; Nelle, Mathias; Pfammatter, Jean-Pierre; Steinlin, Maja and Wagner, Bendicht Peter

Subjects:

600 Technology > 610 Medicine & health

ISSN:

1472-684X

Publisher:

BioMed Central

Language:

English

Submitter:

André Schaller

Date Deposited:

15 Mar 2017 09:02

Last Modified:

20 Mar 2017 09:59

Publisher DOI:

10.1186/s12904-016-0098-3

PubMed ID:

26956995

Uncontrolled Keywords:

Paediatrics; End-of-life; Terminal care; Questionnaire survey; Parental perspectives

BORIS DOI:

10.7892/boris.92627

URI:

https://boris.unibe.ch/id/eprint/92627

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