Core Categories, Categories and Subcategories.

BackgroundHTLV-1 associated myelopathy/tropical spastic paraparesis (HAM/TSP) is a spastic spinal cord-related paralysis that is caused by a human T-lymphotropic virus type 1 infection. Common symptoms of HAM/TSP include gait disorder, bladder disturbance, constipation, and sensory symptoms. Because no curative treatment exists, individuals with HAM/TSP have to self-manage their chronic condition. Although patients with HAM/TSP have unique self-management strategies owing to their complex backgrounds, limited information is available on how they self-manage their chronic conditions. This study aimed to explore the self-management strategies of patients with HAM/TSP in Japan.MethodsUsing semi-structured interviews and an open-ended questionnaire, data were collected from seven participants with HAM/TSP. Interviews were transcribed verbatim. Data analysis was conducted using a qualitative content analysis method to identify categories that describe the self-management strategies of people with HAM/TSP.FindingsSix core categories of self-management strategies of people with HAM/TSP were identified: “Attempting to maintain body functions”, “Acquiring new ways to complement body functions”, “Engaging to maintain an independent daily life”, “Ensuring a specialized treatment environment for HAM/TSP”, “Taking control of HAM/TSP”, and “Moving forward as people with HAM/TSP.”.ConclusionsThe self-management strategies of people with HAM/TSP are affected by three characteristics of HAM/TSP: the lack of an established curative treatment, the low social awareness of the disease, and its infectious nature. This study highlights the need for personalized educational strategies and accessible support for the development of self-management skills.背景：人类T淋巴细胞病毒1型（human T-lymphotropic virus type 1）感染可引发HTLV-1相关脊髓病/热带痉挛性截瘫（HAM/TSP），这是一类痉挛性脊髓相关性瘫痪疾病。HAM/TSP的常见症状包括步态障碍、膀胱功能紊乱、便秘及感觉异常。由于目前尚无治愈性治疗方案，HAM/TSP患者需长期自行管理自身慢性疾病。尽管HAM/TSP患者因个体背景复杂而拥有独特的自我管理策略，但现有关于其慢性疾病自我管理方式的相关信息仍较为匮乏。本研究旨在探讨日本HAM/TSP患者的自我管理策略。 方法：本研究采用半结构化访谈（semi-structured interviews）与开放式问卷（open-ended questionnaire）相结合的方式，从7名HAM/TSP患者中采集研究数据。访谈内容均进行逐字转录。本研究采用质性内容分析（qualitative content analysis）方法开展数据分析，以识别用于描述HAM/TSP患者自我管理策略的类别。 结果：本研究明确了HAM/TSP患者自我管理策略的6个核心类别：“尝试维持身体机能”、“习得新方法以代偿身体机能”、“努力维持日常独立生活”、“构建HAM/TSP专属诊疗环境”、“主动管控HAM/TSP病情”以及“以HAM/TSP患者身份积极前行”。 结论：HAM/TSP患者的自我管理策略受该病三大特征影响：缺乏成熟的治愈性治疗手段、社会对该病的认知度较低，以及其传染性。本研究强调，需为患者制定个性化教育策略，并提供可及性支持以助力其自我管理技能的培养。