Johns Hopkins University School of Medicine (RR Seltzer, PK Donohue, J Shepard, RD Boss), Baltimore, Md; Berman Institute of Bioethics (RR Seltzer, JC Raisanen, RD Boss), Baltimore, Md.
Berman Institute of Bioethics (RR Seltzer, JC Raisanen, RD Boss), Baltimore, Md.
Acad Pediatr. 2020 Apr;20(3):333-340. doi: 10.1016/j.acap.2019.11.018. Epub 2019 Dec 4.
To explore how medical decision-making for children with medical complexity (CMC) occurs in the context of foster care (FC).
Together with a medical FC agency, we identified 15 CMC in medical FC and recruited eligible care team members (biological and foster parents, medical FC nurses, caseworkers in medical FC/child welfare, and pediatricians) for each child. Semistructured interviews were conducted, and conventional content analysis was applied to transcripts.
Fifty-eight interviews were completed with 2-5 care team members/child. Serious decision-making related to surgeries and medical technology was common. Themes regarding medical decision-making for CMC in FC emerged: 1) Protocol: decision-making authority is dictated by court order and seriousness of decision, 2) Process: decision-making is dispersed among many team members, 3) Representing the child's interests: the majority of respondents stated that the foster parent represents the child's best interests, while the child welfare agency should have legal decision-making authority, and 4) Perceived barriers: serious medical decision-making authority is often given to individuals who spend little time with the child.
Medical decisions for CMC can have uncertain risk/benefit ratios. For CMC in FC, many individuals have roles in these nuanced decisions; those with ultimate decision-making authority may have minimal interaction with the child. Pediatricians can assist by clarifying who has legal decision-making authority, facilitating team communication to promote truly informed consent, and serving as a resource to decision-makers. Further research should explore how to adapt the traditional model of shared decision-making to meet the needs of this population.
探讨在寄养（FC）背景下，儿童医疗复杂性（CMC）的医疗决策是如何做出的。
我们与一家医疗 FC 机构合作，确定了 15 名接受医疗 FC 的 CMC，并为每个孩子招募了合格的护理团队成员（亲生和寄养父母、医疗 FC 护士、医疗 FC/儿童福利的个案工作者以及儿科医生）。对这些成员进行半结构化访谈，并对记录进行常规内容分析。
共完成了 58 次访谈，涉及 2-5 名护理团队成员/儿童。与手术和医疗技术相关的重大决策很常见。关于 FC 中 CMC 医疗决策的主题如下：1）方案：决策权限由法院命令和决策的严重程度决定，2）过程：决策分散在许多团队成员之间，3）代表孩子的利益：大多数受访者表示，寄养父母代表了孩子的最大利益，而儿童福利机构应拥有法定决策权，4）感知障碍：具有重大医疗决策权的人往往与孩子互动时间较少。
CMC 的医疗决策可能具有不确定的风险/效益比。对于 FC 中的 CMC，许多人在这些微妙的决策中扮演着角色；那些拥有最终决策权的人可能与孩子的互动很少。儿科医生可以通过澄清谁拥有法定决策权、促进团队沟通以促进真正的知情同意，以及为决策者提供资源来提供帮助。进一步的研究应该探索如何调整传统的共同决策模式，以满足这一人群的需求。
