Factors influencing home-based rehabilitation exercise and digital intervention needs among patients with spinal muscular atrophy: a qualitative study
10.3969/j.issn.1006-9771.2026.10.008
- VernacularTitle: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
- Author:
Jiayin ZHENG
1
;
Zihan XU
1
;
Qingyu LI
1
;
Yuhang ZHANG
1
;
Siwen HUANG
1
;
Xiaohu FU
2
;
Guangyu ZHANG
3
;
Wenzhu LI
4
;
Qiao CHEN
5
;
Qiqi WANG
5
;
Sitong LUO
1
Author Information
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
- Publication Type:Journal Article
- Keywords:
spinal muscular atrophy;
home-based rehabilitation;
digital health;
qualitative study;
behavior change wheel
- From:
Chinese Journal of Rehabilitation Theory and Practice
2026;32(10):1194-1203
- CountryChina
- Language:Chinese
-
Abstract:
ObjectiveTo 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. MethodsA 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. ResultsSix 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. ConclusionHome-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.
