Xafis Vicki, Wilkinson Dominic, Sullivan Jane
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.
BMC Palliat Care. 2015 Apr 30;14:19. doi: 10.1186/s12904-015-0024-0.
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.
由于此类重大事件在广泛的维度中展开，面临为其孩子做出临终决策的父母的信息需求十分复杂。虽然父母承认医疗保健专业人员是他们的主要信息来源，但他们也会求助于各种其他书面信息来源，试图获取事实、找到解决方案并寻求希望。关于面临为其孩子做出临终决策的父母的需求，已有很多相关著述，但对于这类父母的书面信息需求却知之甚少。成人重症监护环境中的研究表明，书面资源对理解医学事实（包括诊断和预后）、家庭与医疗保健专业人员之间的沟通以及亲属去世后家庭的情绪健康有积极影响。
对主要关于协助或阻碍父母做出临终决策的特征的实证研究进行了元综合分析，以便为我们为父母开发书面资源（简短印刷版和在线完整版）提供见解和指导。
文献中最常被提及的需求与信息提供的多个方面有关；信息的数量、质量、传递方式和时机不仅影响父母做出临终决策的能力，还影响他们的情绪健康。元综合分析支持书面材料的价值，因为这些材料在相关内容领域为父母和医疗保健专业人员都提供了指导。
需要进一步研究以确定书面资源对父母临终决策的影响，以及对父母在医院环境中的经历期间及之后的幸福感的影响。
