“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.

目前针对重型创伤性脑损伤（severe Traumatic Brain Injury, TBI）后所面临挑战的质性研究较为有限。本研究旨在探究伤后三年的重型TBI患者及其亲密照料者（Close Others, COs）所识别的康复障碍，以及应对此类障碍的可行建议。本研究共纳入9名TBI患者与16名亲密照料者参与半结构化访谈，并采用反思性主题分析法对访谈数据进行分析，从多个时间节点识别出康复障碍：包括损伤即刻、急性期医疗照护、住院康复、门诊康复以及居家/其他安置场景。全时间跨度内均存在的障碍包括：信息匮乏与沟通不畅、既往合并症、漏诊损伤、医护人员相关问题以及照护连续性不足。自急性期医疗照护阶段起，还新增了TBI相关后遗症、应对与情绪调适困难、消极心态、治疗不足、对亲密照料者的支持缺失，以及康复需求的赔偿与资金保障问题。部分障碍仅存在于特定时间节点，例如急性期医疗照护期间的病房环境过度刺激，以及患者出院回家后家属支持不足或缺乏配合。研究者还收集到了应对部分障碍的可行建议，例如提供针对性信息支持、搭建同伴互助体系等，此类建议可为改善重型TBI患者的康复结局提供参考。

### 康复启示
重型创伤性脑损伤后的康复进程可能因多重障碍而受阻，包括沟通不畅、信息供给不足、损伤相关后遗症、针对患者及其亲密照料者的服务与情绪支持匮乏，以及社会大众对创伤性脑损伤的认知教育不足。针对上述障碍的应对建议（如搭建同伴支持网络、推进居家就近康复服务等）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。