What information do parents need when facing end-of-life decisions for their child? A meta-synthesis of parental feedback

BMC Palliative Care

Research Article

Jane Sullivan¹  Vicki Xafis²  Dominic Wilkinson³ 

[1] Children’s Bioethics Centre, The Royal Children’s Hospital, Melbourne, Australia;The Centre for Health Equity, The University of Melbourne, Melbourne, Australia;Discipline of Obstetrics and Gynaecology, The University of Adelaide, Adelaide, Australia;Discipline of Obstetrics and Gynaecology, The University of Adelaide, Adelaide, Australia;John Radcliffe Hospital Oxford, Director of Medical Ethics, Oxford Uehiro Centre for Practical Ethics, University of Oxford, Oxford, UK;

关键词: End of life care;    Consumer health information;    Withholding treatment;    Intensive care;    Decision making;   

DOI  :  10.1186/s12904-015-0024-0

 received in 2014-07-10, accepted in 2015-04-23,  发布年份 2015

来源: Springer

【 摘 要 】

BackgroundThe information needs of parents facing end-of-life decisions for their child are complex due to the wide-ranging dimensions within which such significant events unfold. While parents acknowledge that healthcare professionals are their main source of information, they also turn to a variety of additional sources of written information in an attempt to source facts, discover solutions, and find hope.Much has been written about the needs of parents faced with end-of-life decisions for their child but little is known about the written information needs such parents have. Research in the adult intensive care context has shown that written resources impact positively on the understanding of medical facts, including diagnoses and prognoses, communication between families and healthcare professionals, and the emotional wellbeing of families after their relative’s death.MethodsA meta-synthesis of predominantly empirical research pertaining to features which assist or impede parental end-of-life decisions was undertaken to provide insight and guidance in our development of written resources (short print and online comprehensive version) for parents.ResultsThe most prominently cited needs in the literature related to numerous aspects of information provision; the quantity, quality, delivery, and timing of information and its provision impacted not only on parents’ ability to make end-of-life decisions but also on their emotional wellbeing. The meta-synthesis supports the value of written materials, as these provide guidance for both parents and healthcare professionals in pertinent content areas.ConclusionsFurther research is required to determine the impact that written resources have on parental end-of-life decision-making and on parents’ wellbeing during and after their experience and time in the hospital environment.

【 授权许可】

CC BY   
© Xafis et al.; licensee BioMed Central. 2015