Department of Occupational Therapy and the Center for Outcomes and Measurement, Jefferson College of Rehabilitation Sciences, Thomas Jefferson University, Philadelphia, PA, USA.
Spinal Cord Ser Cases. 2021 Mar 26;7(1):25. doi: 10.1038/s41394-021-00392-8.
The primary objective of this qualitative study was to explore the lived experience of spinal cord injury (SCI) as described by life story interviews with two adults who sustained SCI as children.
Data were collected by conducting 15 life story interviews with two individuals with SCI. Atkinson's Life Story Interview approach along with open-ended questions was utilized to capture the narrative data. Polkinghorne's narrative analysis of eventful data approach was used to configure the data elements into a story with the purpose of understanding the lived experience of SCI of these two individuals. Four themes relevant to the experience of living with a chronic condition emerged: adjustment to life with SCI, hardiness, interdependence, and post-traumatic growth.
This study illustrated how the two participants' personal development and life trajectories were deeply shaped by pediatric-onset SCI. The life story interview process proved to be an effective approach to understanding the lived experience of SCI as told by two adults with pediatric-onset SCI. While the two participants represented unique contexts, their stories conveyed several cohesive, transcendent themes relevant to the experience of living with a chronic condition. Future narrative inquiry research in individuals with pediatric-onset SCI is necessary to build a representation of this population's lived experiences.
本定性研究的主要目的是通过对两名儿童时期脊髓损伤（SCI）患者的生活故事访谈，探讨 SCI 的真实体验。
通过对两名 SCI 患者进行 15 次生活故事访谈收集数据。采用 Atkinson 的生活故事访谈方法和开放式问题来获取叙事数据。采用 Polkinghorne 的有意义事件数据分析方法将数据元素配置成一个故事，以了解这两个人的 SCI 生活体验。出现了四个与慢性疾病生活体验相关的主题：适应 SCI 后的生活、坚韧、相互依存和创伤后成长。
本研究说明了这两名参与者的个人发展和生活轨迹是如何深受儿童期发生的 SCI 影响的。生活故事访谈过程被证明是一种理解两名儿童时期发生 SCI 的成年人所经历的 SCI 的有效方法。虽然这两名参与者代表了不同的背景，但他们的故事传达了一些与慢性疾病生活体验相关的连贯、卓越的主题。未来对儿童时期发生 SCI 的个体进行叙事探究研究，对于构建该人群生活体验的代表性研究是必要的。
