Rabb Shelby, Ireland Laura, Davidson Lexi, Ho Emily S
Department of Occupational Science and Occupational Therapy, Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
Division of Plastic and Reconstructive Surgery, The Hospital for Sick Children, Toronto, ON, Canada.
Hand Ther. 2025 Jul 15:17589983251358493. doi: 10.1177/17589983251358493.
There is emerging evidence from patient-reported questionnaires that participation restrictions related to employment, parenting, and leisure pursuits emerge in adulthood after a brachial plexus birth injury (BPBI). However, little is known about the lived experiences of young adults with BPBI and their participation during this transitional phase. This Interpretive Description qualitative study was informed by the self-determination theory to guide our perspective of how transformations in the areas of autonomy, competency, and relatedness may influence participation throughout the lifespan. Semi-structured interviews with nine young adults between 19 and 34 years of age with BPBI's were conducted, transcribed, and analyzed using thematic analysis to explore their lifelong participation. There were three main themes that arose during the analysis of these interviews: Navigating everyday life, Navigating uncertainties, and Navigating BPBI identity. Within participants shared narratives of how opportunities in childhood helped them figure out how to adapt to their BPBI which led to habitual adaptations in adulthood; self-awareness and self-advocacy skills evolved over time. Common experiences of during major life transitions (e.g., parenting, post-secondary studies) was expressed as a conscious process of relearning and reintegrating the impacts of BPBI. During transition to adulthood, the lived experiences of the visibility and invisibility of disability emerged as a central aspect of . These narratives from the lifelong participation of adults with BPBI provide important insights to inform transitional care programming of children with BPBI within pediatric hand and upper limb clinical settings.
患者报告问卷显示，有新证据表明，臂丛神经产伤（BPBI）后，成年期会出现与就业、育儿和休闲活动相关的参与限制。然而，对于患有BPBI的年轻人在这一过渡阶段的生活经历及其参与情况知之甚少。这项解释性描述质性研究以自我决定理论为依据，以指导我们对自主性、能力和关联性领域的转变如何在整个生命周期中影响参与的看法。对9名年龄在19至34岁之间患有BPBI的年轻人进行了半结构化访谈，访谈内容进行了转录，并采用主题分析法进行分析，以探索他们一生的参与情况。在对这些访谈的分析过程中出现了三个主要主题：应对日常生活、应对不确定性和应对BPBI身份认同。参与者分享了童年时期的机会如何帮助他们弄清楚如何适应自己的BPBI，从而在成年后形成习惯性适应的故事；自我意识和自我倡导技能随着时间的推移而发展。在重大生活转变（如育儿、高等教育）期间的共同经历被表述为一个重新学习和重新整合BPBI影响的有意识过程。在向成年期过渡期间，残疾的可见性和不可见性的生活经历成为这一过程的核心方面。这些来自患有BPBI的成年人一生参与情况的叙述为儿科手部和上肢临床环境中患有BPBI的儿童的过渡性护理规划提供了重要见解。
