Snaman Jennifer M, Kaye Erica C, Spraker-Perlman Holly, Levine Deena, Clark Lisa, Wilcox Robin, Barnett Brittany, Sykes April, Lu Zhaohua, Cunningham Melody J, Baker Justin N
1 Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA.
2 Division of Quality of Life and Palliative Care, Department of Oncology, St. Jude Children's Research Hospital, Memphis, TN, USA.
Am J Hosp Palliat Care. 2018 Dec;35(12):1518-1525. doi: 10.1177/1049909118786875. Epub 2018 Jul 16.
: Education and training for interdisciplinary pediatric providers requires training in principles of palliative and end-of-life (EOL) care. The experiences of bereaved parents can inform and enhance palliative care educational curricula in uniquely powerful and valuable ways. The objective of this study is to present an innovative palliative care educational program facilitated by trained bereaved parents who serve as volunteer educators in local and national palliative care educational forums and to describe how incorporation of bereaved parents in these educational forums affects participant comfort with communication and management of children at the EOL.
: Parent educators underwent both general and session-specific training and participated in debriefings following each session. Survey tools were developed or adapted to determine how bereaved parent educators affected participant experiences in 3 different educational forums. Pre- and postsession surveys with incorporation of retrospective preprogram assessment items to control for response shift were used in the evaluation of institutional seminars on pediatric palliative and EOL care and role-play-based communication training sessions. Results from feedback surveys sent to attendees were used to appraise the participants' experience at the international oncology symposium.
: Involvement of trained parent educators across diverse, interdisciplinary educational forums improved attendee comfort in communicating with, and caring for, patients and families with serious illness. Importantly, parent educators also derive benefit from involvement in educational sessions with interdisciplinary clinicians.
: Integration of bereaved parents into palliative and EOL care education is an innovative and effective model that benefits both interdisciplinary clinicians and bereaved parents.
跨学科儿科医疗服务提供者的教育与培训需要进行姑息治疗和临终关怀（EOL）护理原则方面的培训。丧亲父母的经历能够以独特且强大而有价值的方式为姑息治疗教育课程提供信息并加以完善。本研究的目的是介绍一个由经过培训的丧亲父母推动的创新姑息治疗教育项目，这些父母在地方和全国性姑息治疗教育论坛中担任志愿教育工作者，并描述在这些教育论坛中纳入丧亲父母如何影响参与者在临终时与儿童沟通及护理方面的舒适度。
家长教育工作者接受了一般性和特定课程培训，并在每次课程后参加汇报会。开发或改编了调查工具，以确定丧亲家长教育工作者如何在3个不同的教育论坛中影响参与者的体验。在评估儿科姑息治疗和临终关怀机构研讨会以及基于角色扮演的沟通培训课程时，使用了纳入回顾性项目前评估项目以控制反应偏移的会前和会后调查。发送给与会者的反馈调查结果用于评估参与者在国际肿瘤学研讨会上的体验。
在不同的跨学科教育论坛中，经过培训的家长教育工作者的参与提高了与会者与重病患者及其家庭沟通和护理时的舒适度。重要的是，家长教育工作者也从与跨学科临床医生一起参与教育课程中受益。
将丧亲父母纳入姑息治疗和临终关怀教育是一种创新且有效的模式，对跨学科临床医生和丧亲父母都有益处。
