Sedhed Jenny, Johansson Hanna, Åkesson Elisabet, Franzén Erika, Leavy Breiffni
Department of Neurobiology, Care sciences and Society, Division of Physiotherapy, Karolinska Institutet, Stockholm, Sweden.
Stockholm Sjukhem Foundation, R&D unit, Stockholm, Sweden.
Clin Rehabil. 2025 Feb;39(2):268-278. doi: 10.1177/02692155241298859. Epub 2024 Dec 5.
Digitally supported home exercise offers the potential to expand accessibility to rehabilitation. However, little is known about how people with Parkinson's disease experience performing home exercise programs using digital delivery.
To explore and describe how people with Parkinson's disease perceive digital home-based exercise that is not supported in real-time, and how it affected their everyday lives.
This study was qualitative in nature, using qualitative content analysis with an inductive approach. In-depth, individual, semi-structured interviews were held with 14 participants with Parkinson's disease.
Two overarching themes were formed: "Active agency in the face of uncertainty" and "The home - safe space or disability on display". The overarching themes were formed by four themes: 1) resisting the disease - a hope and a burden, 2) interpreting mixed messages, 3) home exercise - consideration and responsibility, and 4) the social context - judgement and support. Participants with Parkinson's disease believe that home exercise enables them to actively counter the disease, and this belief serves as both a source of hope but also a burden. Although perceived as advantageous, digitally supported home exercise may also incur becoming vulnerable to exposing one's disability.
People with Parkinson's disease struggle to reconcile their beliefs about exercise with that which is encouraged or discouraged by those around them. Exercise in the home involves a dynamic interplay between achieving self-directed goals while trying to balance social consideration and maintaining integrity of identity.
数字支持的家庭锻炼为扩大康复服务的可及性提供了潜力。然而，对于帕金森病患者使用数字方式进行家庭锻炼项目的体验知之甚少。
探讨并描述帕金森病患者如何看待非实时支持的数字家庭锻炼，以及它如何影响他们的日常生活。
本研究本质上是定性研究，采用归纳法进行定性内容分析。对14名帕金森病患者进行了深入的、个体的、半结构化访谈。
形成了两个总体主题：“面对不确定性时的积极能动性”和“家——安全空间或残疾展示场所”。总体主题由四个主题构成：1）对抗疾病——希望与负担，2）解读混合信息，3）家庭锻炼——考量与责任，4）社会背景——评判与支持。帕金森病患者认为家庭锻炼使他们能够积极对抗疾病，这种信念既是希望的源泉，也是一种负担。尽管数字支持的家庭锻炼被认为有优势，但也可能导致暴露自身残疾的风险。
帕金森病患者难以协调他们对锻炼的信念与周围人鼓励或不鼓励的态度。在家中锻炼涉及在实现自我导向目标的同时，努力平衡社会考量并保持身份完整性之间的动态相互作用。
