Division of Plastic and Reconstructive Surgery, The Hospital for Sick Children, Toronto, Canada; Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, Canada.
Li Ka Shing Knowledge Institute, St. Michael's Hospital, Toronto, Canada; Department of Physical Therapy, University of Toronto, Toronto, Canada.
Patient Educ Couns. 2021 Oct;104(10):2586-2591. doi: 10.1016/j.pec.2021.03.017. Epub 2021 Mar 15.
The objective of this study is to elucidate the decision-making experiences of youth with brachial plexus birth injuries who face preference-sensitive decisions regarding treatment options for a persistent elbow contracture.
Transcripts, research-created drawings, and field notes from in-depth interviews with 5 young adults and 14 youth-parent dyads, and 15 participant observation sessions of families and clinicians in the clinic setting were deductively and inductively coded and thematically analyzed.
Youth's shared decision making was influenced by relational processes with their clinicians and parents. Youth's trust in their clinicians' recommendations for pursuing treatment and pressure from their parents to pursue or continue rehabilitation treatment affected how their voices were expressed and heard. Parental emotional adjustment to the birth injury played a role in parental perceptions of what was deemed their youth's best interest in the shared decision.
The decision-making experiences of youth with brachial plexus birth injury illustrate the complexity of paediatric preference-sensitive decisions and the significance of social and emotional factors on these shared decisions.
Opportunity for youth to express their voice without external pressure during shared decision making is needed to make well-informed decisions based on their own values. Interventions such as decision coaching and decision support tools may help youth and parents to formally identify and discuss these relational processes.
本研究旨在阐明患有臂丛神经出生损伤的青年在面临与持续肘部挛缩治疗选择相关的偏好敏感决策时的决策经验。
对 5 名成年青年和 14 名青年-家长二人组，以及 15 名在诊所环境中家庭和临床医生的参与者观察会议进行深入访谈的转录本、研究创作的图纸和现场笔记，进行演绎和归纳编码，并进行主题分析。
青年的共同决策受到与他们的临床医生和家长的关系过程的影响。青年对其临床医生建议进行治疗的信任以及父母对其进行康复治疗的压力，影响了他们表达和倾听声音的方式。父母对出生伤害的情绪调整对父母对共同决策中认为是青年最佳利益的看法产生了影响。
患有臂丛神经出生损伤的青年的决策经验说明了儿科偏好敏感决策的复杂性，以及社会和情感因素对这些共同决策的重要性。
在共同决策中，需要为青年提供表达自己声音而不受外部压力的机会，以便根据自己的价值观做出明智的决策。决策辅导和决策支持工具等干预措施可能有助于青年和家长正式确定和讨论这些关系过程。
