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 et al. BMC Palliative Care (2016) 15:30 DOI 10.1186/s12904-016-0098-3 RESEARCH ARTICLE Open Access 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 Zimmermann1,2, Eva Bergstraesser3, Sandra Engberg4, Anne-Sylvie Ramelet5,6, Katrin Marfurt-Russenberger1, Nicolas Von der Weid7, Chantal Grandjean6, Patricia Fahrni-Nater8, Eva Cignacco1,9* and on behalf of the PELICAN Consortium 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. Keywords: Paediatrics, End-of-life, Terminal care, Questionnaire survey, Parental perspectives * Correspondence: 1 Institute of Nursing Science, University of Basel, Bernoullistrasse 28, 4056 Basel, Switzerland 9 Research in Midwifery, University of Applied Sciences Bern, Health Division, Bern, Switzerland Full list of author information is available at the end of the article © 2016 Zimmermann et al. Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Zimmermann et al. BMC Palliative Care (2016) 15:30 Background 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. Their need for compassionate professional support is high. Support throughout terminal care and after the loss of a child was reported to have a positive impact on long-term grieving outcomes of parents who lost a child to cancer [1]. For clinicians it is therefore imperative to know how parents experience their child’s end-of-life (EOL) and what their specific needs are in order to provide good quality care. 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 [2–4]. 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 [2–4]. Deficiencies in meeting parental needs were identified across all themes, e.g. insufficient communication, lack of respect, and lack of emotional support [2]. Caring for a child at the end of her/his life and supporting the family is most challenging for health care professionals. It requires a skilled multidisciplinary health care team that adopts a comprehensive and integrative care approach [5]. This has led to the emergence of the medical subspecialty of paediatric palliative care (PPC), which is defined by the World Health Organization as the active total care of the child’s body, mind and spirit, and involves giving support to the family. It requires a broad approach that includes the family. It can be provided in tertiary care facilities, in community health centres and even in children’s homes [6]. Many countries have recognized the need for PPC and a series of hospital-based programs have been developed and implemented during the last decade [7, 8]. In Switzerland, this need is acknowledged by the Federal Office of Public Health by incorporating it in its national strategy and conception for implementation [9, 10]. Their proposed framework emphasizes the importance of a person-centred approach focusing on the complexity of the situation and needs of the person concerned [10]. In the field of paediatrics especially, person-centeredness must be extended to family-centredness, with the child and family as the unit of care. Paediatric care encompasses the whole age continuum from infants and children who have never experienced or expressed preferences to adolescents able to discuss their situation and express expectations [11], and it takes place in various in- and outpatient care settings and at home. Page 2 of 14 Fortunately, childhood deaths are a rare event. In Switzerland 424 deaths in children (0 to 14 years of age) were registered in 2013. Mortality data from developed countries show, that perinatal conditions contribute to 50 % of all deaths in the first year of life. Beyond the first year, external causes, e.g. accidents, are the most common causes of death. Complex chronic conditions s (...truncated)