1 Division of Pediatric Critical Care, Department of Pediatrics, Columbia University College of Physician and Surgeons, New York, New York.
2 Critical Care Service, Memorial Sloan Kettering Cancer Center, Weill Cornell Medical College, New York, New York.
Ann Am Thorac Soc. 2017 Oct;14(10):1539-1547. doi: 10.1513/AnnalsATS.201612-1002OC.
The decision of whether to initiate or forgo long-term ventilation (LTV) for children with life-limiting conditions can be complex and impactful. Providers are responsible for helping families to understand the consequences of their options and guiding them through shared decision-making, but little has been published on how to do this.
To assess how directors of pediatric home ventilation programs facilitate shared decision-making with families facing decisions of whether to initiate or forgo LTV for their children with life-limiting conditions. In addition, to assess directors' perspectives on these families' decisional needs.
Purposeful recruiting of directors/codirectors of pediatric home ventilation programs at children's hospitals was used. We performed semistructured interviews using an open-ended interview guide developed de novo to assess their approach to informed, shared decision-making around LTV and their perspectives on these decisions. Qualitative data analysis was conducted using a thematic approach based on framework analysis in which thematic saturation was achieved.
A sample of 15 experienced physician directors across North America was interviewed. All (15/15) inform families of the potential benefits and burdens/risks of LTV for the child and of the option to forgo LTV. All stress to families the physical, emotional, and social impact of caring for a child using LTV on the family; 12 directors also highlight the financial impact. All recommend that decision-making around LTV should be interdisciplinary, initiated early, and not rushed; nine described their approach as guided by the family's goals for the child and their family. All recommend that providers be transparent, candid, active listeners, and supportive. All directors believe that the family's decision should be respected, but vary in the extent to which they recommend an option to families. They described barriers to decision-making that stem from families, providers, and other sources.
As providers who follow children using LTV, directors of pediatric home ventilation programs have perspectives regarding the decisional needs of these families and how to meet them that can help inform and shape the practices of other providers who assist families facing this decision.
对于患有危及生命疾病的儿童，是否启动或放弃长期通气（LTV）的决策可能非常复杂且影响深远。提供者有责任帮助家庭了解其选择的后果，并指导他们进行共同决策，但关于如何做到这一点的研究甚少。
评估儿科家庭通气项目主任如何帮助面临是否为其患有危及生命疾病的儿童启动或放弃 LTV 的家庭进行共同决策。此外，评估主任对这些家庭决策需求的看法。
采用有目的地招募儿童医院儿科家庭通气项目主任/副主任。我们使用了新开发的开放式访谈指南进行半结构式访谈，以评估他们在 LTV 方面进行知情、共同决策的方法以及他们对这些决策的看法。采用基于框架分析的主题方法进行定性数据分析，主题饱和度得以实现。
对来自北美的 15 名经验丰富的医师主任进行了访谈。所有（15/15）主任都向家庭告知 LTV 对儿童的潜在益处和负担/风险，以及放弃 LTV 的选择。所有人都向家庭强调了使用 LTV 照顾孩子对家庭的身体、情感和社会影响；12 位主任还强调了经济影响。所有人都建议围绕 LTV 的决策应跨学科进行，尽早启动，不要匆忙；9 位主任表示他们的方法以家庭对孩子及其家庭的目标为指导。所有人都建议提供者保持透明、坦诚、积极倾听和支持。所有主任都认为家庭的决定应该得到尊重，但在多大程度上向家庭推荐某种选择存在差异。他们描述了来自家庭、提供者和其他来源的决策障碍。
作为长期跟随 LTV 儿童的提供者，儿科家庭通气项目主任对这些家庭的决策需求以及满足这些需求的方法有自己的看法，这有助于为协助面临这一决策的家庭的其他提供者提供信息并塑造其实践。
