“It’s been a long hard road”: challenges faced in the first three years following traumatic brain injury

There is limited qualitative research exploring challenges experienced following severe traumatic brain injury (TBI). We investigated challenges to recovery identified by individuals who sustained severe TBI three years earlier or their close others (COs), as well as suggestions for managing these challenges. Nine participants with TBI and 16 COs completed semi-structured interviews. Using reflexive thematic analysis, challenges were identified across several timeframes (i.e., at the injury, acute care, inpatient rehabilitation, outpatient rehabilitation, and at home/other location). Challenges experienced across all timeframes included: lack of information and poor communication, pre-existing conditions, missed injuries, and issues with medical staff, and continuity of care. From acute care onwards, there were TBI-related consequences, issues with coping and emotional adjustment, negative outlook, insufficient treatment, lack of support for COs, and issues with compensation and funding for rehabilitation needs. Some challenges were unique to a specific timeframe (e.g., over-stimulating ward setting during acute care, and limited or unsupportive families once injured individuals went home). Suggestions for managing some of the challenges were provided (e.g., information provision, having peer supports). Suggestions should be considered to promote successful outcomes following severe TBI.IMPLICATIONS FOR REHABILITATIONRecovery following a severe traumatic brain injury can be hindered by challenges, such as poor communication, limited information provision, injury-related consequences, limited services and emotional support for the injured individual and their Close Others, and a need for education of the broader community about traumatic brain injury.Suggestions for managing these challenges (e.g., peer supports; services closer to home) could be used to inform clinical guidelines that could be used in a rehabilitation context.These suggestions ultimately aim to improve the post-injury experience and outcomes of individuals with traumatic brain injury and their Close Others. Recovery following a severe traumatic brain injury can be hindered by challenges, such as poor communication, limited information provision, injury-related consequences, limited services and emotional support for the injured individual and their Close Others, and a need for education of the broader community about traumatic brain injury. Suggestions for managing these challenges (e.g., peer supports; services closer to home) could be used to inform clinical guidelines that could be used in a rehabilitation context. These suggestions ultimately aim to improve the post-injury experience and outcomes of individuals with traumatic brain injury and their Close Others.

目前针对重度创伤性脑损伤（traumatic brain injury, TBI）后所经历挑战的质性研究较为匮乏。本研究针对伤后三年的重度TBI幸存者及其亲密照料者（close others, COs）所明确的康复挑战，以及应对此类挑战的相关建议展开了调查。本研究共招募9名TBI患者与16名亲密照料者，所有参与者均完成半结构化访谈。采用反思性主题分析法，本研究识别出多个时间节点下的康复挑战，涵盖损伤即刻、急诊救治、住院康复、门诊康复以及居家/其他场所等阶段。全阶段共通的挑战包括：信息匮乏与沟通不畅、既往基础疾病、漏诊损伤、医护人员相关问题以及照护连续性不足。自急诊救治阶段起，还新增了TBI相关后遗症、应对与情绪调适困难、消极心态、治疗资源不足、亲密照料者支持缺位，以及康复需求相关的赔偿与资助不足等问题。部分挑战仅存在于特定时间阶段，例如急诊阶段的病房环境过度刺激，以及患者出院居家后家属支持有限或缺乏支持。研究同时提出了部分应对上述挑战的建议（如提供伤后信息支持、设立同伴支持体系），此类建议可为促进重度TBI患者的康复结局提供参考。

### 康复照护启示
重度创伤性脑损伤后的康复进程可能因多重挑战受阻，例如沟通不畅、信息供给不足、损伤相关后遗症、患者与亲密照料者的服务与情绪支持有限，以及需要面向大众开展创伤性脑损伤相关科普教育。应对这些挑战的建议（如同伴支持、居家就近的康复服务）可用于指导康复场景下的临床指南制定。此类建议最终旨在改善创伤性脑损伤患者及其亲密照料者的伤后体验与康复结局。

重度创伤性脑损伤后的康复进程可能因多重挑战受阻，例如沟通不畅、信息供给不足、损伤相关后遗症、患者与亲密照料者的服务与情绪支持有限，以及需要面向大众开展创伤性脑损伤相关科普教育。应对这些挑战的建议（如同伴支持、居家就近的康复服务）可用于指导康复场景下的临床指南制定。此类建议最终旨在改善创伤性脑损伤患者及其亲密照料者的伤后体验与康复结局。