Departments of Orthopaedic Surgery and Allied Health Sciences, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, OH, USA.
United Brachial Plexus Network, Reading, MA, USA.
Int J Qual Stud Health Well-being. 2024 Dec;19(1):2408810. doi: 10.1080/17482631.2024.2408810. Epub 2024 Oct 4.
To explore brachial plexus birth injury (BPBI)-affected adults' health-related quality of life (HRQoL) experiences informed by the theoretical framework of the International Classification of Functioning, Disability, and Health.
This study applied a qualitative collective case study design. Twelve participants who participated in a prior survey study were recruited using maximum variation sampling. One-on-one semi-structured interviews focused on gaining in-depth understanding of participants' experiences with HRQoL. Interviews were recorded verbatim and thematically analysed.
We identified two themes. First, the theme comprised the ways BPBI affects physical and emotional health and how BPBI is intertwined with affected individuals' identities, activities/participation, and social environments. Second, the theme encompassed how BPBI is a chronic condition that changes over time and varies among affected individuals. The cross-case analysis derived a conceptual model of BPBI HRQoL to describe the BPBI experience through the lifespan. In this model, multiple dimensions of BPBI HRQoL expand through the lifespan while BPBI-specific health resources' availability contract.
By providing insight into the many ways that BPBI affects and is affected by an individual's functioning and personal, social, and healthcare environmental factors, these findings underscore lifelong individualized care for BPBI-affected persons is needed.
根据《国际功能、残疾和健康分类》理论框架，探讨臂丛神经损伤（BPBI）患者的健康相关生活质量（HRQoL）体验。
本研究采用定性的集体案例研究设计。使用最大变异抽样法招募了 12 名曾参加过先前调查研究的参与者。一对一的半结构化访谈重点是深入了解参与者的 HRQoL 体验。访谈进行了逐字记录并进行了主题分析。
我们确定了两个主题。首先，主题 包括 BPBI 影响身体健康和心理健康的方式，以及 BPBI 如何与受影响个体的身份、活动/参与和社会环境交织在一起。其次，主题 包括 BPBI 是一种随时间变化且在受影响个体之间存在差异的慢性疾病。跨案例分析得出了 BPBI HRQoL 的概念模型，以描述整个生命周期中的 BPBI 体验。在这个模型中，BPBI HRQoL 的多个维度在整个生命周期中扩展，而 BPBI 特定的健康资源的可用性则会减少。
这些发现强调了需要为 BPBI 患者提供终身个性化护理，因为它们深入了解了 BPBI 影响和受个体功能、个人、社会和医疗保健环境因素影响的多种方式。
