An Adaptive Pacing Intervention for Adults Living With Long COVID: A Narrative Study of Patient Experiences of Using the PaceMe app.

IF 1.6 Q3 HEALTH CARE SCIENCES & SERVICES Journal of Patient Experience Pub Date : 2024-11-10 eCollection Date: 2024-01-01 DOI:10.1177/23743735241272158
Rachel Meach, David Carless, Nilihan E M Sanal-Hayes, Marie Mclaughlin, Lawrence D Hayes, Jacqueline L Mair, Jane Ormerod, Natalie Hilliard, Joanne Ingram, Nicholas F Sculthorpe
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Abstract

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.

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针对长期慢性阻塞性肺病成人的自适应起搏干预:PaceMe 应用程序患者使用体验的叙述性研究。
适应性起搏(AP)是一种自我管理技术,旨在平衡慢性病患者的能量和休息。适应性起搏可以帮助肌痛性脑脊髓炎/慢性疲劳综合征患者学会如何管理自己的能量消耗,从而降低他们出现劳累后不适(PEM)和其他症状的风险。鉴于某些症状的相似性,AP 对因长期 COVID 而致残的患者也具有康复潜力。本研究的目的是探索患者对 AP 干预("PaceMe "应用程序)的体验,以确定其对长期 COVID 患者的价值。25 名参与者分别参加了两次叙事访谈(干预开始时和 3-6 个月时)。我们采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 应用程序的主要益处有关的 4 个主题:(1) PEM 管理,(2) 支持,(3) 验证,以及 (4) 控制和代理。通过揭示关键事实和聚焦患者的声音,这些研究结果有助于更好地了解长期慢性阻塞性肺疾病患者的经历和需求,并突出了数字健康干预作为康复重要组成部分的价值。
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来源期刊
Journal of Patient Experience
Journal of Patient Experience HEALTH CARE SCIENCES & SERVICES-
CiteScore
2.00
自引率
6.70%
发文量
178
审稿时长
15 weeks
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