Michelson Kelly N, Frader Joel, Sorce Lauren, Clayman Marla L, Persell Stephen D, Fragen Patricia, Ciolino Jody D, Campbell Laura C, Arenson Melanie, Aniciete Danica Y, Brown Melanie L, Ali Farah N, White Douglas
Division of Pediatric Critical Care Medicine, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA.
Department of Pediatrics, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA.
J Patient Exp. 2016 Dec;3(4):108-118. doi: 10.1177/2374373516685950. Epub 2016 Dec 1.
Stakeholder-developed interventions are needed to support pediatric intensive care unit (PICU) communication and decision-making. Few publications delineate methods and outcomes of stakeholder engagement in research. We describe the process and impact of stakeholder engagement on developing a PICU communication and decision-making support intervention. We also describe the resultant intervention. Stakeholders included parents of PICU patients, healthcare team members (HTMs), and research experts. Through a year-long iterative process, we involved 96 stakeholders in 25 meetings and 26 focus groups or interviews. Stakeholders adapted an adult navigator model by identifying core intervention elements and then determining how to operationalize those core elements in pediatrics. The stakeholder input led to PICU-specific refinements, such as supporting transitions after PICU discharge and including ancillary tools. The resultant intervention includes navigator involvement with parents and HTMs and navigator-guided use of ancillary tools. Subsequent research will test the feasibility and efficacy of our intervention.
需要由利益相关者制定的干预措施来支持儿科重症监护病房（PICU）的沟通与决策。很少有出版物描述利益相关者参与研究的方法和结果。我们描述了利益相关者参与制定PICU沟通与决策支持干预措施的过程和影响。我们还描述了由此产生的干预措施。利益相关者包括PICU患者的父母、医疗团队成员（HTMs）和研究专家。通过为期一年的迭代过程，我们让96名利益相关者参与了25次会议以及26次焦点小组讨论或访谈。利益相关者通过确定核心干预要素，然后确定如何在儿科实施这些核心要素，对成人导航员模式进行了调整。利益相关者的意见导致了针对PICU的改进，例如支持PICU出院后的过渡以及纳入辅助工具。由此产生的干预措施包括导航员与父母和医疗团队成员的互动，以及在导航员指导下使用辅助工具。后续研究将测试我们干预措施的可行性和有效性。
