一项针对医疗保健专业人员对有婴儿出生时患有疾病/性别发育差异的父母的决策需求的看法的调查。
A survey of healthcare professionals' perceptions of the decisional needs of parents with an infant born with a disorder/difference of sex development.
机构信息
Department of Pediatrics, Division of Psychiatry and Behavioral Health, University of Utah Spencer Fox Eccles School of Medicine, Salt Lake City, UT, USA.
Susan B. Meister Child Health Evaluation & Research (CHEAR) Center, University of Michigan, Ann Arbor, MI, USA.
出版信息
J Pediatr Urol. 2023 Feb;19(1):39-49. doi: 10.1016/j.jpurol.2022.09.015. Epub 2022 Sep 28.
INTRODUCTION
Parents of infants born with differences in sex development (DSD) face many difficult decisions. As part of a larger project designed to develop educational interventions to promote shared decision making, this study assessed healthcare professionals' (HCPs) perceptions of parental decision-making needs when an infant is born with a DSD.
METHODS
A cross-sectional web-based survey following the Ottawa Decision Support Framework was conducted in two waves, between October 2020 and June 2022. Survey domains included: common DSD decisions, indicators of parents' decisional needs, and resources and approaches to support parental decision making. Eligible participants were HCPs working within interprofessional pediatric DSD centers in the USA. Up to three reminders were sent. Descriptive analysis was conducted.
RESULTS
71 HCPs participated; most (>90%) reported parents experience signs of decisional conflict including feeling unsure, worrying about what could go wrong, and fear of choosing a "wrong," irreversible option. The majority (90%) reported parents experience strong emotions interfering with their receptivity to information or deliberation. The majority (>70%) identified inadequate parental knowledge of the DSD as a barrier to decision making, coupled with information overload (>90%). HCPs rated several factors as "very" important, including: parents having information on benefits, harms, and other features of options (93%), having information about all the available options (87%), and having access to providers to discuss the options (84%). Providers endorsed using a variety of approaches to support parents' decision making; however, access to decision aids was not universally rated as highly important (very, 44%; somewhat, 46%; a little, 10%).
IMPLICATIONS
Overall, HCPs expressed favorable attitudes toward supporting active parental participation in medical decision making. Opportunities for enhanced support of shared decision making included: a) recognizing and addressing parental emotional distress and informational overload at a time when parents need to consider complex options for their infant or young child; and b) the need for HCPs to encourage values clarification in decision-making encounters with parents.
简介
患有性别发育差异（DSD）的婴儿的父母面临着许多艰难的决定。作为旨在制定促进共同决策的教育干预措施的更大项目的一部分，本研究评估了医疗保健专业人员（HCP）在婴儿患有 DSD 时对父母决策需求的看法。
方法
2020 年 10 月至 2022 年 6 月期间，采用渥太华决策支持框架的横断面网络调查进行了两次。调查领域包括：常见的 DSD 决策、父母决策需求的指标以及支持父母决策的资源和方法。合格的参与者是在美国从事多专业儿科 DSD 中心工作的 HCP。发送了最多三个提醒。进行了描述性分析。
结果
71 名 HCP 参与；大多数（>90%）报告父母经历决策冲突的迹象，包括感到不确定、担心出错以及担心选择“错误”、不可逆的选择。大多数（>70%）报告父母经历强烈的情绪干扰他们对信息或审议的接受程度。大多数（>70%）人认为父母对 DSD 的了解不足是决策的障碍，再加上信息过载（>90%）。HCP 认为以下几个因素非常重要，包括：父母了解有关选择的利弊和其他特征的信息（93%）、了解所有可用选择的信息（87%）以及可以与提供者讨论这些选择（84%）。提供者赞成使用各种方法来支持父母的决策；然而，获得决策辅助工具的机会并非普遍被认为非常重要（非常重要，44%；有些，46%；有点，10%）。
结论
总体而言，HCP 对支持父母积极参与医疗决策持有利态度。增强共同决策支持的机会包括：a）在父母需要考虑其婴儿或幼儿的复杂选择时，认识和解决父母的情绪困扰和信息过载问题；b）HCP 需要鼓励在与父母的决策会议中澄清价值观。
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