Parent Perspectives in Shared Decision-Making for Children With Medical Complexity.
Parent Perspectives in Shared Decision-Making for Children With Medical Complexity.
复制标题
父母对患有医疗复杂性儿童的共同决策的看法。
DOI：
10.1016/j.acap.2020.06.008
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发表时间：
2020-11
影响因子：
3.1
通讯作者：
Sanders LM
中科院分区：
文献类型：
--
作者：
Lin JL;Clark CL;Halpern-Felsher B;Bennett PN;Assis-Hassid S;Amir O;Nunez YC;Cleary NM;Gehrmann S;Grosz BJ;Sanders LM
共享决策(SDM)可能会改善患有医疗复杂性(CMC)的儿童的预后。CMC的SDM发生率低于其他儿童，但对如何改善CMC的SDM知之甚少。这项研究的目的是描述针对CMC的SDM的父母观点，并确定改善针对这一弱势群体的SDM要素的机会。对CMC父母的采访探讨了SDM的偏好和经验。符合条件的父母是18岁的≥，会说英语或西班牙语，有12岁的CMC<；访谈由独立编码者记录、转录和分析，以确定共同的主题，并使用改进的扎根理论进行分析。代码是使用迭代过程开发的，首先是对成绩单的子集进行开放编码，然后与所有团队成员讨论，然后提炼成初步代码。随后进行了编码审查，直到没有新的主题出现，并充分探索了现有的主题。我们在住院和门诊环境中对32位家长进行了访谈(27位英文，平均父母年龄34岁，SD=7；平均孩子4岁，SD=4；50%的家庭收入和lt；50%，47%的人健康素养低)。出现了三类主题：参与者、知识和背景。改善SDM的关键机会包括：提供共享的决策时间表，有目的地整合患者的偏好和价值观，以及解决决策中的不确定性。我们的研究结果为家长提供了针对CMC的SDM体验。我们确定了改善CMC SDM的独特机会，这将为未来的研究和干预提供信息，以改善CMC的SDM。我们通过家长访谈，描述了父母对患有复杂疾病的儿童进行共同决策的经历。共同决策的促进者包括建立共同的决策时间表，引出儿童的偏好和价值观，以及解决决策中的不确定性。
Shared decision-making (SDM) may improve outcomes for children with medical complexity (CMC). CMC have lower rates of SDM than other children, but little is known about how to improve SDM for CMC. The objective of this study is to describe parent perspectives of SDM for CMC and identify opportunities to improve elements of SDM specific to this vulnerable population. Interviews with parents of CMC explored SDM preferences and experiences. Eligible parents were ≥18 years old, English- or Spanish-speaking, with a CMC < 12 years old. Interviews were recorded, transcribed, and analyzed by independent coders for shared themes using modified grounded theory. Codes were developed using an iterative process, beginning with open-coding of a subset of transcripts followed by discussion with all team members, and distillation into preliminary codes. Subsequent coding reviews were conducted until no new themes emerged and existing themes were fully explored. We conducted interviews with 32 parents (27 in English, mean parent age 34 years, SD=7; mean child age 4 years, SD=4; 50% with household income <$50,000, 47% with low health literacy) in inpatient and outpatient settings. Three categories of themes emerged: participant, knowledge, and context. Key opportunities to improve SDM included: providing a shared decision timeline, purposefully integrating patient preferences and values, and addressing uncertainty in decisions. Our results provide insight into parent experiences with SDM for CMC. We identified unique opportunities to improve SDM for CMC that will inform future research and interventions to improve SDM for CMC. We described parent experiences in shared decision-making for children with medical complexity using parent interviews. Facilitators of shared decision-making included establishing a shared decision timeline, eliciting child preferences and values, and addressing uncertainties in decisions.
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DOI：
10.1016/j.jpeds.2017.09.001
发表时间：
2018-01
期刊：
The Journal of pediatrics
影响因子：
--
作者：
Lin JL;Cohen E;Sanders LM
通讯作者：
Sanders LM
影响因子：
3.5
作者：
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通讯作者：
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影响因子：
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作者：
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通讯作者：
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影响因子：
3.5
作者：
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通讯作者：
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影响因子：
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作者：
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通讯作者：
Guevara, James P.