家庭反思网：创建一个关于儿科家庭通气的家长对家长的网络工具。

Family-Reflections.com: Creating a parent-to-parent web-based tool regarding pediatric home ventilation.

机构信息

Pediatrics, University of Washington School of Medicine, 1900 Ninth Avenue, Seattle 98101, USA; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, 1900 Ninth Ave, Seattle 98101, USA.

出版信息

Patient Educ Couns. 2023 Sep;114:107855. doi: 10.1016/j.pec.2023.107855. Epub 2023 Jun 15.

DOI:10.1016/j.pec.2023.107855

PMID:37348312

Abstract

BACKGROUND

The decision to initiate pediatric mechanical ventilation via tracheostomy ("home ventilation") is complex and parents often desire information from other parents who have faced this decision. However, parent-to-parent communication is challenging as it is difficult to connect new families to experienced families in ways that optimize informed, balanced decision-making.

OBJECTIVE

Create a parent-to-parent web-based tool to support decision-making about pediatric home ventilation.

PATIENT INVOLVEMENT

The tool was created based on interviews and feedback from parents.

METHODS

We interviewed parents who previously chose for, or against, home ventilation for their child. Interview themes and family comments guided website development. Viewer feedback was solicited via an embedded survey in the tool.

RESULTS

We created 6 composite character families to communicate 6 themes about home ventilation: 1) Considering treatment options, 2) Talking with medical team, 3) Impact on life at home, 4) Impact on relationships, 5) Experience for the child, and 6) If the child's life is short. Nine families who reviewed the draft tool felt it would have helped with their decision about home ventilation. Specifically, it supported families in thinking through what was "most important about their child's breathing problems" (7 of 9 parents) and feeling "more at peace with the decision" (8 of 9 parents). Between 6/1/20-12/31/22, nearly 5500 viewers have accessed the tool and 56 viewers completed the survey (including 13 families and 39 clinicians). Feedback from experienced families and clinicians reported the tool taught them something new.

DISCUSSION

This novel parent-to-parent tool shows promise for expanding access to balanced, family-centered information about pediatric home ventilation.

PRACTICAL VALUE

The diverse stories and decisions let parents access multiple family perspectives. The tool's focus is on family-centric information that parents reported was usually missing from clinician counseling.

FUNDING

This work was supported by the National Palliative Care Research Center.

摘要

背景

通过气管造口术（“家庭通气”）启动小儿机械通气的决定很复杂，父母通常希望从其他面临这一决定的父母那里获得信息。然而，父母之间的交流具有挑战性，因为很难以优化知情、平衡决策的方式将新家庭与经验丰富的家庭联系起来。

目的

创建一个基于互联网的父母对父母工具，以支持关于小儿家庭通气的决策。

患者参与

该工具是根据对之前选择为孩子进行家庭通气或反对家庭通气的父母的访谈和反馈创建的。访谈主题和家庭意见指导网站的开发。通过工具中嵌入的调查征求了观看者的反馈。

结果

我们创建了 6 个复合角色家庭，以传达关于家庭通气的 6 个主题：1）考虑治疗方案，2）与医疗团队交谈，3）对家庭生活的影响，4）对人际关系的影响，5）对孩子的影响，以及 6）如果孩子的生命短暂。9 个审查了草案工具的家庭认为它将有助于他们对家庭通气的决定。具体来说，它支持家庭思考“孩子呼吸问题最重要的是什么”（9 位家长中的 7 位），并“对决定更放心”（9 位家长中的 8 位）。在 2020 年 6 月 1 日至 2022 年 12 月 31 日期间，近 5500 名观众访问了该工具，56 名观众完成了调查（包括 13 个家庭和 39 名临床医生）。有经验的家庭和临床医生的反馈报告说，该工具教会了他们一些新的东西。