脊髓损伤患者疾病全程照护需求的质性研究 [中文引用][英文引用]

目的  探讨脊髓损伤患者疾病全程的照护需求，为实施疾病全程照护服务提供参考。方法  采用目的抽样法，选取合肥市 3 所三级甲等综合医院 2023 年 3 月至 8 月收治的 SCI 患者和照顾者进行半结构化访谈，采用 Colaizzi 7 步分析法进行资料归纳并提炼主题。基于慢性疾病轨迹理论在急性期、恢复早期、恢复中期和慢性期分别选取脊柱外科或康复科患者 10例、9 例、8 例、9 例，照顾者 6 例、4 例、4 例、4 例，总共 36 例患者，18 名照顾者作为研究对象。结果  基于慢性疾病轨迹理论提炼出 4个不同时期 SCI患者的照护需求共 4个主题，11个亚主题：急性期主要是获取疾病治疗及预后等信息、早期功能障碍管理、并发症预防和情感支持需求；恢复早期主要是功能康复训练和提高日常活动能力的需求；恢复中期主要是强化康复锻炼、出院后适应居家康复和长期康复困难的心理指导需求；慢性期主要是提供延续性康复指导和支持、回归家庭社会和重建生活的需求。结论  SCI 患者在疾病不同时期存在不同的照护需求，应充分了解其全程照护需求，提供针对性的支持性照护服务，构建完善的医院 - 家庭 - 社区连续康复模式。

Objective To explore the requirement for full-course care in patients with spinal cord injury（SCI）and to provide guidance for continuous patient care. Methods Purposeful sampling was used to recruit SCI patients and their caregivers from three Tier-IIIA hospitals in Anhui Province between March and August 2023. Semi-structured interviews were conducted and analysed using Colaizzi’s method. A total of 36 patients and 20 caregivers were interviewed. Of the patients from either spinal surgery or rehabilitation department，10 in acute phase，9 in early recovery phase，8 in middle recovery phase and 9 in chronic phase，with 6，4，4 and 4 accompanying caregivers guided by the Chronic Disease Trajectory Framework were set as research objects，respectively. Results Guided by the Chronic Disease Trajectory Framework，four themes with eleven sub-themes emerged.（1）acute phase included subthemes of acquire information on treatment and prognosis，early dysfunction management，complication prevention and emotional support. （2）early-recovery included sub-themes of needs for functional rehabilitation and improvement of ability of daily activities.（3）long-term rehabilitation included sub-themes of needs for continued rehabilitation，home-based rehabilitation after discharge，and psychological guidance，and（4）chronic-phase included sub-themes of needs for guidance and support for ongoing rehabilitation，and reintegration into family and social life. Conclusion SCI patients have stage-specific care needs. Tailored full-course care and services should be developed to establish a seamless hospital-family-community rehabilitation.