Abstract
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.Electronic supplementary materialThe online version of this article (doi:10.1186/s12904-015-0024-0) contains supplementary material, which is available to authorized users.
Highlights
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
Background most children and newborn infants who are admitted to intensive care survive, a small proportion (3-6%) does not [1,2]
For many of these children, death is preceded by a discussion between parents and the medical staff, and by an explicit decision to limit treatment that could potentially have prolonged life [2,3,4,5,6]
Summary
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. 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. Most children and newborn infants who are admitted to intensive care survive, a small proportion (3-6%) does not [1,2] For many of these children (between 75 and 90% of infants who die in intensive care units), death is preceded by a discussion between parents and the medical staff, and by an explicit decision to limit treatment that could potentially have prolonged life (this is referred to as an “end-of-life decision”) [2,3,4,5,6].
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
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.
