Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2016 Mar 9:15:30.
doi: 10.1186/s12904-016-0098-3.

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

Karin Zimmermann  1   2 , Eva Bergstraesser  3 , Sandra Engberg  4 , Anne-Sylvie Ramelet  5   6 , Katrin Marfurt-Russenberger  7 , Nicolas Von der Weid  8 , Chantal Grandjean  9 , Patricia Fahrni-Nater  10 , Eva Cignacco  11   12 ; PELICAN Consortium
Collaborators, Affiliations

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

Karin Zimmermann et al. BMC Palliat Care. .

Erratum in

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.

PubMed Disclaimer

Figures

Fig. 1
Fig. 1
Study recruitment and participation
Fig. 2
Fig. 2
Parental experiences and perceived satisfaction with care according to the six quality domains
Fig. 3
Fig. 3
What areas of your personal life were negatively influenced by the illness and death of your child? Parents could choose from a list of seven potential areas and check all that applied. The areas are represented by the different colours. The number of checks per participant was for cardiology 2.3, neonatology 1.5, neurology 2.3, and oncology 2.2
See this image and copyright information in PMC

References

    1. Kreicbergs UC, Lannen P, Onelov E, Wolfe J. Parental grief after losing a child to cancer: impact of professional and social support on long-term outcomes. J Clin Oncol. 2007;25(22):3307–12. doi: 10.1200/JCO.2006.10.0743. - DOI - PubMed
    1. Aschenbrenner AP, Winters JM, Belknap RA. Integrative review: parent perspectives on care of their child at the end of life. J Pediatr Nurs. 2012;27(5):514–22. doi: 10.1016/j.pedn.2011.07.008. - DOI - PubMed
    1. Melin-Johansson C, Axelsson I, Jonsson Grundberg M, Hallqvist F. When a child dies: parents’ experiences of palliative care-an integrative literature review. J Pediatr Nurs. 2014;29(6):660–9. doi: 10.1016/j.pedn.2014.06.009. - DOI - PubMed
    1. Stevenson M, Achille M, Lugasi T. Pediatric palliative care in Canada and the United States: a qualitative metasummary of the needs of patients and families. J Palliat Med. 2013;16(5):566–77. doi: 10.1089/jpm.2011.0076. - DOI - PubMed
    1. Craig F, Abu-Saad Huijer H, Benini F, Kuttner L, Wood C, Feraris PC, et al. IMPaCCT: standards of paediatric palliative care. Schmerz. 2008;22(4):401–8. doi: 10.1007/s00482-008-0690-4. - DOI - PubMed

Publication types