The online version of this article (doi:10.1186/s12904-015-0024-0) contains supplementary material, which is available to authorized users.
The authors declare that they have no competing interests.
VX conducted the search of the literature, the meta-synthesis, interpreted the findings, and drafted the paper. DW conceived the idea for the paper, provided advice on the search strategy, assisted with the meta-synthesis and interpretation, and reviewed and edited drafts of the paper. JS provided input on the meta-synthesis and interpretation, and reviewed and edited drafts of the paper. All authors approved the final draft of the paper before submission.
VX is an ethicist and conducts research in the field of perinatal ethics. In addition to a bioethics background, she has a background in linguistics and has extensive experience in qualitative research.
DW is a consultant neonatologist and Director of Medical Ethics at the Oxford Uehiro Centre for Practical Ethics. He is the author of ‘Death or Disability? The ‘Carmentis Machine’ and decision-making for critically ill children’, Oxford University Press, 2013.
JS was for many years a senior social worker at The Royal Children’s Hospital, Melbourne. She holds qualifications in social work, adolescent and child psychology & theology. Her PhD was in the field of bioethics. She is currently a counsellor in a community palliative care team.
The 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.
A 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.
The 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.
Further 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.
Additional file 1: Table S1. Studies included in meta-synthesis. Provides information about all the studies included in the meta-synthesis of findings relating to communication or information-related features that parents report as being helpful or unhelpful during end-of-life decision-making.12904_2015_24_MOESM1_ESM.pdf
Additional file 2: Topics covered in the parental resourceCaring Decisions. Provides an overview of the topics addressed in the comprehensive online resource developed for parents (and clinicians) involved in making end-of-life decisions for the seriously ill or dying child.12904_2015_24_MOESM2_ESM.pdf
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