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评估表达性写作对脊髓损伤成人的心理社会影响:定性研究。

Assessing the Psychosocial Impact of Expressive Writing on Adults With Spinal Cord Injury: Qualitative Study.

作者信息

Xie Shelly M, McKenna Molly, Veach Kendall, Williams Sydney, Jones Mary Grace, Vander Kamp Elizabeth, Green Salaam, Edwards Lauren, Kirklin Kimberly, Jones Benjamin A, Yuen Hon K

机构信息

Department of Occupational Therapy, School of Health Professions, University of Alabama at Birmingham, SHPB 354, 1720 2nd Avenue South, Birmingham, AL, 35294, United States, 1 2059346301.

Center for Arts in Medicine, University of Florida, Gainesville, FL, United States.

出版信息

JMIR Form Res. 2025 Jun 30;9:e71162. doi: 10.2196/71162.

Abstract

BACKGROUND

Spinal cord injury (SCI) results in significant physical, emotional, and social consequences, often leading to profound grief and unresolved emotional burdens. While expressive writing has shown potential in facilitating emotional processing and in aiding coping after trauma, loss, and health-related adversity, its impact on individuals who have suddenly lost physical abilities due to SCI remains underexplored.

OBJECTIVE

The study aimed to examine the experiences of adults with SCI who participated in a 10-week web-based coach-guided expressive writing program to understand its impact using a qualitative research design with a phenomenological approach.

METHODS

Participants were recruited through various outreach strategies based on a set of predefined criteria. A total of 50 individuals from 23 states expressed interest in the expressive writing program. Of those who met the eligibility criteria, 29 individuals completed the preprogram questionnaire. A total of 5 participants did not complete the postprogram assessments, including the exit interview. The program sessions were structured with reflective prompts designed to explore their emotions and life experiences related to their conditions. Qualitative data were collected through postprogram semistructured interviews and analyzed using thematic analysis to identify themes related to participants' experiences and program impact. The analysis was conducted without any preset theoretical framework of reference.

RESULTS

A total of 24 adults with SCI, aged between 34 and 76 years (average age 51, SD 12 years), participated in the expressive writing program and the exit interview. Of these, 19 participants were White, and 17 were female. In total, 18 participants had sustained a traumatic SCI; of these, 10 had quadriplegia, 12 had paraplegia, and 2 had monoplegia. Qualitative analysis revealed three overarching themes: (1) supportive environment: the program provided participants a space that encouraged open reflection on past events and personal struggles, and the guidance of patient and empathetic coaches offered a sense of comfort, direction, and motivation. (2) Cathartic experience: the program helped them process complex emotions, reframe their perspectives, and cultivate a more positive outlook on life and their injury. Many participants, new to guided expressive writing, found the process therapeutic and transformative. (3) Acceptance of life: the cumulative impact of the sessions fostered self-compassion, forgiveness, empowerment, and self-advocacy. Participants reported reduced feelings of loneliness, a greater sense of community, and profound positive changes, expressing the desire to continue writing beyond the program.

CONCLUSIONS

The sudden onset of lifelong disability due to SCI leads to profound physical, mental, and social challenges. The coach-guided expressive writing program enhanced the emotional processing and articulation, coping mechanisms, and overall well-being of the participants. These results highlight the potential of expressive writing programs as accessible and valuable rehabilitative interventions for individuals with SCI.

摘要

背景

脊髓损伤(SCI)会导致严重的身体、情感和社会后果,常常引发深切的悲痛和未解决的情感负担。虽然表达性写作已显示出在促进情感处理以及帮助应对创伤、损失和与健康相关的逆境方面具有潜力,但其对因脊髓损伤而突然丧失身体能力的个体的影响仍未得到充分探索。

目的

本研究旨在通过采用现象学方法的定性研究设计,考察参与为期10周的基于网络的教练指导的表达性写作项目的成年脊髓损伤患者的经历,以了解该项目的影响。

方法

根据一组预定义标准,通过各种外展策略招募参与者。来自23个州的总共50人对表达性写作项目表示感兴趣。在符合资格标准的人中,29人完成了项目前问卷。共有5名参与者未完成项目后评估,包括退出访谈。项目环节采用反思性提示进行构建,旨在探索他们与自身状况相关的情感和生活经历。通过项目后半结构化访谈收集定性数据,并使用主题分析进行分析,以确定与参与者经历和项目影响相关的主题。分析是在没有任何预设理论参考框架的情况下进行的。

结果

共有24名年龄在34至76岁(平均年龄51岁,标准差12岁)的成年脊髓损伤患者参与了表达性写作项目和退出访谈。其中,19名参与者为白人,17名是女性。总共有18名参与者遭受了创伤性脊髓损伤;其中,10人患有四肢瘫痪,12人患有截瘫,2人患有单瘫。定性分析揭示了三个总体主题:(1)支持性环境:该项目为参与者提供了一个空间,鼓励他们对过去的事件和个人挣扎进行开放反思,耐心且富有同理心的教练的指导带来了舒适感、方向感和动力。(2)宣泄体验:该项目帮助他们处理复杂的情感,重新构建他们的观点,并培养对生活和自身损伤更积极的看法。许多初次参与引导式表达性写作的参与者发现这个过程具有治疗作用且能带来转变。(3)接受生活:各环节的累积影响培养了自我同情、宽恕、赋权和自我倡导意识。参与者报告称孤独感减少,社区意识增强,并且有深刻的积极变化,表达了在项目结束后继续写作的愿望。

结论

脊髓损伤导致的终身残疾的突然发生带来了严重的身体、心理和社会挑战。教练指导的表达性写作项目增强了参与者的情感处理和表达、应对机制以及整体幸福感。这些结果凸显了表达性写作项目作为脊髓损伤患者可获得的有价值的康复干预措施的潜力。

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