Meach Rachel, Carless David, Sanal-Hayes Nilihan E M, Mclaughlin Marie, Hayes Lawrence D, Mair Jacqueline L, Ormerod Jane, Hilliard Natalie, Ingram Joanne, Sculthorpe Nicholas F
Sport and Physical Activity Research Institute, School of Health and Life Sciences, University of the West of Scotland, Glasgow, UK.
Current affiliation: Department of Earth Sciences, Durham University, Durham, UK.
J Patient Exp. 2024 Nov 10;11:23743735241272158. doi: 10.1177/23743735241272158. eCollection 2024.
Adaptive pacing (AP) is a self-management technique which seeks to balance energy and rest in individuals with chronic health conditions. Adaptive pacing can help people with myalgic encephalomyelitis/chronic fatigue syndrome learn how to manage their energy expenditure thereby reducing their risk of post-exertional malaise (PEM) and other symptoms. Given some symptom similarity, AP also has rehabilitation potential for people experiencing disability from long COVID. The purpose of this study was to explore patient experiences of an AP intervention (the "PaceMe" app) to determine its value for individuals experiencing long COVID. Twenty-five participants each took part in two narrative interviews (at intervention start point and at 3-6 months). Data were analyzed using narrative thematic analysis. Our analysis identified 4 themes relating to key benefits of the PaceMe app: (1) PEM management, (2) Support, (3) Validation, and (4) Control and Agency. By illuminating the critical facts and centring patient voices, these findings contribute a better understanding of the experiences and needs of those with long COVID and highlight the value of a digital health intervention as a vital component of rehabilitation.
适应性 pacing(AP)是一种自我管理技术,旨在平衡患有慢性健康问题的个体的精力与休息。适应性 pacing 可以帮助患有肌痛性脑脊髓炎/慢性疲劳综合征的人学会如何管理他们的能量消耗,从而降低他们出现运动后不适(PEM)和其他症状的风险。鉴于某些症状相似性,AP 对因长期感染新冠病毒而致残的人也具有康复潜力。本研究的目的是探索患者对一种 AP 干预措施(“PaceMe”应用程序)的体验,以确定其对长期感染新冠病毒的个体的价值。25 名参与者每人参加了两次叙事访谈(在干预开始时和 3 - 6 个月时)。使用叙事主题分析法对数据进行了分析。我们的分析确定了与 PaceMe 应用程序的关键益处相关的 4 个主题:(1)PEM 管理,(2)支持,(3)认可,以及(4)控制与自主。通过阐明关键事实并以患者的声音为中心,这些发现有助于更好地理解长期感染新冠病毒者的经历和需求,并突出了数字健康干预作为康复重要组成部分的价值。