Abstract
BackgroundParents 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.MethodsQuestionnaire 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.ResultsOf 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.ConclusionsAlthough 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 materialThe online version of this article (doi:10.1186/s12904-016-0098-3) contains supplementary material, which is available to authorized users.
Highlights
Parents facing the death of their child have a strong need for compassionate professional support
Design, setting, participants, and recruitment The cross-sectional questionnaire survey was embedded in a larger research project concerned with paediatric EOL care needs in Switzerland (Paediatric End-of-LIfe CAre Needs – paediatric end-of-life care needs (PELICAN), 2012-2015, NCT01983852) drawing from a population based sample of deceased children, their bereaved parents and health care professionals
With neonates comprising the largest group of deceased children, most deaths occurred on a neonatal intensive care unit (ICU), as reported by the parents
Summary
Parents facing the death of their child have a strong need for compassionate professional support. When facing the death of their child, parents experience an unimaginably painful life event and severe crisis that affects the whole family for life In this highly stressful time parents are confronted with uncertainty and are required to make difficult decisions, e.g. withdrawal of life-sustaining interventions. Two recent integrative reviews and a qualitative metasummary extracted existing evidence from 36 studies (29 qualitative, 7 quantitative) about parental perspectives on their child’s palliative care (PC) or EOL care [2,3,4]. This evidence provides an overview of themes/domains most important to parents and can be summarised as: sincere relationships and emotional, spiritual and cultural support; genuine communication; alleviation of suffering; continuity, coordination and accessibility of care; and bereavement support [2,3,4]. Deficiencies in meeting parental needs were identified across all themes, e.g. insufficient communication, lack of respect, and lack of emotional support [2]
Sign-in/Register to view highlights & summary Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
