Johns Hopkins Berman Institute of Bioethics, Baltimore, Maryland, USA.
Eudowood Division of Pediatric Respiratory Sciences, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
Pediatr Pulmonol. 2022 Feb;57(2):567-575. doi: 10.1002/ppul.25749. Epub 2021 Nov 10.
Deciding about pediatric home ventilation is exceptionally challenging for parents. Understanding the decision-making needs of parents who made different choices for their children could inform clinician counseling that better supports parents' diverse values and goals.
To determine how clinicians can meet the decisional needs of parents considering home ventilation using a balanced sample of families who chose for or against intervention.
We conducted semi-structured interviews of parents who chose for or against home ventilation for their child within the previous 5 years. Parents were recruited from three academic centers across the United States. Interviews focused on parent-clinician communication during decision-making and how clinicians made the process easier or more difficult. Qualitative analysis was used to generate themes and identify key results.
Thirty-eight parents were interviewed; 20 chose for and 18 chose against home ventilation. Five themes described their perspectives on how clinicians can facilitate high-quality decision-making: demonstrating dedication to families, effectively managing the medical team, introducing the concept of home ventilation with intention, facilitating meaningful conversation about the treatment options, and supporting and respecting the family's decision.
High-quality decision-making around home ventilation depends on individual clinician actions and the complex operations of large academic settings. Strong working relationships with parents, collaborative alliances with colleagues, and appropriate delivery of key content can help meet the needs of parents considering invasive breathing supports for their children.
为孩子做出有关家庭通气治疗的决策对父母来说极具挑战性。了解做出不同选择的父母的决策需求，可以为临床医生提供咨询服务，更好地支持父母多样化的价值观和目标。
通过使用对干预措施持赞成或反对态度的家庭的平衡样本，确定临床医生如何满足考虑家庭通气治疗的父母的决策需求。
我们对过去 5 年内为孩子选择家庭通气治疗或反对家庭通气治疗的父母进行了半结构化访谈。这些父母来自美国三个学术中心。访谈重点是父母与临床医生在决策过程中的沟通情况，以及临床医生如何使过程变得更容易或更困难。采用定性分析来生成主题并确定关键结果。
共访谈了 38 位父母，其中 20 位选择了家庭通气治疗，18 位选择了反对家庭通气治疗。有五个主题描述了他们对临床医生如何促进高质量决策的看法：表现出对家庭的奉献精神，有效地管理医疗团队，有针对性地介绍家庭通气治疗的概念，促进有关治疗方案的有意义的对话，以及支持和尊重家庭的决策。
家庭通气治疗的高质量决策取决于临床医生的个人行动和大型学术机构的复杂运作。与父母建立良好的工作关系，与同事建立协作联盟，以及适当传递关键内容，可以帮助满足考虑为孩子提供侵入性呼吸支持的父母的需求。
