脊髓性肌萎缩症居家康复锻炼影响因素和数字化干预需求：一项质性研究

doi:10.3969/j.issn.1006-9771.2026.10.008

《中国康复理论与实践》 ›› 2026, Vol. 32 ›› Issue (10): 1194-1203.doi: 10.3969/j.issn.1006-9771.2026.10.008

脊髓性肌萎缩症居家康复锻炼影响因素和数字化干预需求：一项质性研究

郑佳音¹, 徐子涵¹, 李擎宇¹, 张宇航¹, 黄思文¹, 付晓虎², 张光宇³, 李文竹⁴, 陈巧⁵, 王琦琦⁵, 罗思童¹()

¹ 清华大学万科公共卫生与健康学院，北京市 100084
² 首都医科大学附属北京儿童医院康复科，北京市 100045
³ 北京协和医院物理医学康复科，北京市 100730
⁴ 北京大学第一医院康复医学科，北京市 100034
⁵ 中关村罕萌儿童用药创新研究院，北京市 100190

收稿日期:2026-07-20 修回日期:2026-09-07 接受日期:2026-09-16 出版日期:2026-10-25 发布日期:2026-10-23
通讯作者: 罗思童(1989-)，女，汉族，副教授，主要研究方向：公共卫生与数字健康。E-mail： sitongluo@mail.tsinghua.edu.cn
作者简介:郑佳音(1986-)，女，汉族，天津市人，博士研究生，主要研究方向：罕见病与数字健康。
基金资助:
北京市自然科学基金项目(L242049)

Factors influencing home-based rehabilitation exercise and digital intervention needs among patients with spinal muscular atrophy: a qualitative study

Zheng Jiayin¹, Xu Zihan¹, Li Qingyu¹, Zhang Yuhang¹, Huang Siwen¹, Fu Xiaohu², Zhang Guangyu³, Li Wenzhu⁴, Chen Qiao⁵, Wang Qiqi⁵, Luo Sitong¹()

¹ Vanke School of Public Health, Tsinghua University, Beijing 100084, China
² Department of Rehabilitation Medicine, Beijing Children's Hospital, Capital Medical University, Beijing 100045, China
³ Department of Physical Medicine and Rehabilitation, Peking Union Medical College Hospital, Beijing 100730, China
⁴ Department of Rehabilitation Medicine, Peking University First Hospital, Beijing 100034, China
⁵ Zhongguancun Hanmeng Institute for Pediatric Drug Innovation, Beijing 100190, China

Received:2026-07-20 Revised:2026-09-07 Accepted:2026-09-16 Published:2026-10-25 Online:2026-10-23
Supported by:
Beijing Natural Science Foundation(L242049)

摘要/Abstract

摘要：

目的基于行为改变轮(BCW)理论，探讨脊髓性肌萎缩症(SMA)患者居家康复锻炼的影响因素和数字化干预需求，为数字化居家康复干预措施开发提供依据。

方法采用两阶段质性研究设计。2024年12月至2025年3月，通过便利抽样纳入SMA患者、主要照护者、康复专业人员、临床医师、患者组织代表和卫生政策专家共14名。第一阶段对7名患者及其照护者和组织代表进行半结构化个体访谈，识别居家康复锻炼的影响因素和未满足需求；第二阶段组织12名多利益相关方开展焦点小组访谈，讨论数字化干预的功能、知识内容和界面需求，其中5名曾参加第一阶段；两阶段共涉及14名独立参与者，累计参与19人次。采用主题分析法，结合能力-机会-动机-行为(COM-B)模型进行演绎和归纳分析。

结果共形成6个主题。第一阶段显示，SMA患者存在康复服务连续性和专业资源可及性不足，机构康复中断与居家执行衰减并存；患者及照护者能力不足、时间和支持条件受限，以及目标、反馈和激励缺乏等能力、机会和动机因素共同影响居家康复锻炼，个体化方案和专业指导是主要未满足需求。第二阶段显示，数字化干预核心功能包括个体化锻炼计划、专业指导与反馈、提醒与激励、安全监测、远程评定和隐私权限管理；知识内容主要包括分层锻炼指导、照护技能、异常情况识别和求助信息；界面应简洁、低负担并适配不同用户。

结论 SMA患者康复锻炼受能力、机会和动机多维因素共同影响，数字化干预应重点满足个体化方案、专业指导和持续行为支持需求。本研究可为SMA数字化居家康复干预原型开发提供依据，其可行性、安全性、临床效果和经济性仍需进一步验证。

关键词: 脊髓性肌萎缩症, 居家康复, 数字健康, 质性研究, 行为改变轮

Abstract:

Objective To explore the factors influencing home-based rehabilitation exercise and the needs for digital interventions among patients with spinal muscular atrophy (SMA), based on the behavior change wheel (BCW), and to provide evidence for the development of digital home-based rehabilitation interventions.

Methods A two-phase qualitative study was conducted from December, 2024 to March, 2025. Using convenience sampling, 14 participants were recruited, including patients with SMA, primary caregivers, rehabilitation professionals, clinicians, a patient organization representative and a health policy expert. In phase 1, semi-structured individual interviews were conducted with seven participants, including patients, caregivers and a patient organization representative, to identify factors influencing home-based rehabilitation exercise and unmet needs. In phase 2, a focus group involving 12 stakeholders was conducted, including five participants who had participated in phase 1, to explore requirements for the functions, knowledge content and interface design of a digital intervention, five of them had participated in phase 1. Overall, the two phases involved 14 individual participants, accounting for 19 participant-instances. Thematic analysis was performed using both deductive and inductive approaches, guided by the capability-opportunity-motivation-behavior (COM-B) model.

Results Six themes were identified. phase 1 showed that patients with SMA experienced inadequate continuity of rehabilitation services and limited access to professional rehabilitation resources, with interruptions in institution-based rehabilitation coexisting with declining adherence to home-based exercise. Home-based rehabilitation exercise was jointly influenced by capability-, opportunity- and motivation-related factors, including limited capabilities of patients and caregivers, constraints in time and supportive conditions and insufficient goals, feedback, and incentives. Individualized rehabilitation plans and professional guidance were the major unmet needs. phase 2 showed that the core functions of a digital intervention should include individualized exercise plans, professional guidance and feedback, reminders and incentives, safety monitoring, remote assessment, and privacy and permission management. Core knowledge content should include stratified exercise guidance, caregiving skills, recognition of abnormal conditions, and information on when and how to seek help. The interface should be simple, impose a low user burden and accommodate different types of users.

Conclusion Home-based rehabilitation exercise among patients with SMA is jointly influenced by multiple capability-, opportunity- and motivation-related factors. Digital interventions should prioritize individualized rehabilitation plans, professional guidance and sustained behavioral support. These findings may inform the development of a digital home-based rehabilitation intervention prototype for patients with SMA; its feasibility, safety, clinical effectiveness and economic value require further evaluation.

Key words: spinal muscular atrophy, home-based rehabilitation, digital health, qualitative study, behavior change wheel

中图分类号:

R746.4

郑佳音, 徐子涵, 李擎宇, 张宇航, 黄思文, 付晓虎, 张光宇, 李文竹, 陈巧, 王琦琦, 罗思童. 脊髓性肌萎缩症居家康复锻炼影响因素和数字化干预需求：一项质性研究[J]. 《中国康复理论与实践》, 2026, 32(10): 1194-1203.

Zheng Jiayin, Xu Zihan, Li Qingyu, Zhang Yuhang, Huang Siwen, Fu Xiaohu, Zhang Guangyu, Li Wenzhu, Chen Qiao, Wang Qiqi, Luo Sitong. Factors influencing home-based rehabilitation exercise and digital intervention needs among patients with spinal muscular atrophy: a qualitative study[J]. Chinese Journal of Rehabilitation Theory and Practice, 2026, 32(10): 1194-1203.

图/表 4

表1

表2

表3

第一和第二阶段半结构化访谈提纲设计"

阶段	访谈提纲框架	主要访谈题目	设计目的
第一阶段	参与者与SMA康复锻炼的关系	患者或照护者基本信息、患者疾病信息等	引导参与者进入访谈情境
	目前SMA患者居家康复锻炼面临的主要困难与障碍有哪些?	当前机构康复锻炼和居家锻炼的实际安排如何?	由浅入深，引导参与者充分表达，了解康复锻炼现状
		哪些原因使机构锻炼或居家锻炼减少?
		康复专业人员和当地康复资源的支持和能力如何?
	哪些因素会影响SMA患者居家康复锻炼?	患者和照护者身体功能和能力、知识技能、疲劳判断等方面有哪些困难，影响居家康复锻炼的开始或坚持?	引导参与者充分表达影响锻炼的原因
		哪些家庭环境或外部资源为居家康复锻炼提供条件和机会，或者产生不利影响?
		愿意康复锻炼的动力是什么?哪些原因会促使愿意长期坚持?
	SMA患者居家康复锻炼有哪些未满足的需求?	当前锻炼方案来源与调整如何实现?动作内容和剂量如何把握?	引导参与者对核心关切需求进行深度描述
	SMA患者居家康复锻炼有哪些未满足的需求?	从哪里获得居家康复锻炼的知识和技能指导?出现不会操作时如何处理?最需要获得哪方面支持?	引导参与者对核心关切需求进行深度描述
第二阶段	第一阶段主题反馈与初步干预框架说明	研究人员介绍第一阶段主题、基于BCW理论形成的数字化居家康复干预初步设计(表4)	确认第一阶段结果是否贴合经验，并引导参与者进入第二阶段讨论
	需要哪些数字化居家康复功能?	对于视频、个体化方案、教育培训、提醒、激励的初步功能，有哪些是核心功能?	由浅入深，引导参与者对功能、内容和界面逐项给予反馈
		个体化锻炼方案如何生成和设计?
		通过视频教育培训康复锻炼技能的路径?有何更好建议?
		提醒和激励是否必须?如何设计才能更符合患者不同需求?
		希望获取哪些沟通和支持方式?如何实现才能有助于长期居家锻炼?
	需要哪些康复锻炼和照护知识?	视频内容应如何设计和录制才能更符合患者居家康复需求?应包括哪些要素?
	需要哪些康复锻炼和照护知识?	除锻炼动作外，还需要哪些照护和风险识别知识?
	数字化居家康复干预平台的界面和交互有什么需求?	用户端界面设计和交互应满足哪些要求?

表3

表4

基于BCW理论的数字化居家康复干预的初步设计"

居家康复锻炼影响因素和需求	COM-B归类	对应BCW 干预功能	数字化干预措施初期功能设计
机构康复中断，居家执行衰减并存	机会	环境重塑、赋能	建立数字化居家康复锻炼支持体系，包括线上方案、居家锻炼执行记录、定期反馈和调整
专业SMA康复资源不足，患者居家锻炼缺乏连续的专业指导	机会、能力	赋能、教育	康复专业人员配置个体化锻炼方案
专业SMA康复资源不足，患者居家锻炼缺乏连续的专业指导	机会、能力	赋能、教育	支持患者和照护者提交锻炼问题、获取专业锻炼反馈
患者功能受限、易疲劳，照护者缺乏操作技能和知识	能力	教育、培训、示范	通过锻炼示范视频提升能力，视频包括动作目的、体位、协助方法、锻炼要点、频率时长
现有方案个体化欠缺，缺少动作组合和调整条件	能力、机会	赋能、培训	根据分型、年龄、功能水平、疲劳情况、家庭条件和照护能力形成分层方案，由康复专业人员确认配置
缺少可感知的锻炼目标、效果反馈，长期坚持动力不足	动机	劝导、激励	提供锻炼目标、完成反馈和进展提示；儿童可增加积分或徽章，成人更强调身体功能实现的目标，提供照护者心理疏导与支持
学业、工作和照护负担影响锻炼安排	机会、动机	环境重塑	搭建基于示范视频的适宜居家场景的数字健康居家康复锻炼平台；设有个性化提醒，可由患者或照护者自行设置提醒时间，锻炼情况记录实现平台记录监测
居家康复锻炼中疲劳、疼痛、异常情况难以判断	能力	教育、赋能	设置安全提示，记录疲劳、疼痛，提示暂停康复锻炼或寻求专业帮助
患者和家庭希望获得专业及同伴支持，但不希望增加平台运营和康复专业人员负担	机会、动机	环境重塑、赋能	优先提供与康复专业人员的沟通功能；同伴支持可连接已有微信群等常用渠道

表4

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编号	角色分类	性别	年龄/岁	职业/身份	相关信息
P001	患者组织代表	女	45	全职社会工作者	工作年限22年；学历本科
P002	患者	男	14	学生	SMA分型3型；自理能力基本能自理；残疾等级二级；居家康复依据康复专业人员口头指导
P003	照护者	女	40	失业	照护患者的情况为SMA分型3型；患者自理能力基本能自理；患者残疾等级二级；居家康复依据康复专业人员口头指导
P004	患者	男	34	兼职工作	SMA分型3型；自理能力完全不能自理；残疾等级一级；居家康复依据病友经验、网络/书籍、自行安排；具有患者组织工作经验
P005	照护者	女	37	失业	照护患者的情况为SMA分型3型；患者自理能力完全能自理；患者残疾等级未鉴定；居家康复无固定依据，仅做简单动作
P006	照护者	女	49	兼职工作	照护患者的情况为SMA分型2型；患者自理能力完全不能自理；患者残疾等级一级；居家康复依据病友经验分享
P007	照护者	女	43	兼职工作	照护患者的情况为SMA分型2型；患者仅能部分自理；患者残疾等级二级；居家康复依据医生口头指导、网络/书籍、自行安排、病友经验分享

编号	角色分类	性别	年龄	职业/身份	相关信息
F001	患者组织代表	女	45	全职社会工作者	同P001
F002	患者	男	34	兼职工作	同P004
F003	照护者	女	37	失业	同P005
F004	照护者	女	43	兼职工作	同P007
F005	照护者	女	40	失业	同P003
F006	临床医生	女	51	全职医生	工作年限23年；博士；主任医师(正高)；近3年服务SMA患者51~100例
F007	康复专业人员	女	37	全职康复专业人员	工作年限10年；博士；主治医师(中级)；近3年服务SMA患者31~50例
F008	康复专业人员	男	44	全职康复专业人员	工作年限22年；硕士；康复治疗师(中级)；近3年服务SMA患者51~100例
F009	康复专业人员	女	37	全职康复专业人员	工作年限12年；硕士；康复医师(正高)；近3年服务SMA患者31~50例
F010	康复专业人员	男	64	全职康复专业人员	工作年限35年；硕士；康复医师(正高)；近3年服务SMA患者11~30例
F011	康复专业人员	男	38	全职康复专业人员	工作年限15年；本科；康复治疗师(中级)；近3年服务SMA患者51~100例
F012	政策专家	男	40	全职研究人员	工作年限13年；博士；研究员(正高)

脊髓性肌萎缩症居家康复锻炼影响因素和数字化干预需求：一项质性研究

Factors influencing home-based rehabilitation exercise and digital intervention needs among patients with spinal muscular atrophy: a qualitative study

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