Primary Community and Social Care, Faculty of Medicine and Health Sciences, University of Keele, Keele, UK.
School of Nursing and Midwifery, Queen's University Belfast, Belfast, UK.
Health Expect. 2024 Feb;27(1):e13879. doi: 10.1111/hex.13879. Epub 2023 Sep 26.
INTRODUCTION: Long COVID (LC) is a multisystem illness, with fluctuating symptoms that affect the daily activities of patients. There are still no standardised diagnostic criteria or treatment approaches for managing LC. The LC-Optimal Health Programme (LC-OHP) was designed to support the mental wellbeing and physical health of people with LC. Gaining an in-depth understanding of patients' experiences and support strategies is imperative to identifying appropriate supports to guide them through their recovery. This study aimed to elicit the experiences and perceptions of adults with LC regarding symptoms, support strategies and the LC-OHP. METHODS: As part of a wider randomised controlled trial of the LC-OHP, participants in the intervention group had their sessions audio-recorded. Transcripts were thematically analysed to identify common emergent themes. FINDINGS: The LC-OHP was delivered to 26 participants. Data were collected between January 2022 and February 2023. Four main themes emerged: 'Symptoms and impact of LC'; 'Other sources of support and perceived challenges'; 'Strategies to support LC' and 'Perceptions of the LC-OHP'. CONCLUSION: LC experiences were mostly described as fluctuating and burdensome that significantly impacted daily activities, and physical and mental health. The LC-OHP was perceived as beneficial. Access and experiences of other sources of support were varied. Increasing LC awareness amongst health practitioners and the wider community has the potential to improve the experiences of those affected by LC. PATIENT OR PUBLIC CONTRIBUTION: The LC-OHP was derived from the OHP. It was adapted to people with LC following consultation with practitioners at an LC clinic. Additionally, the mode and timing of delivering the programme to this population were taken into account for its delivery at the convenience of participating patients. While considering that fatigue and brain fog are amongst the most reported complaints of people with LC, public members with LC were not involved directly in this study; however, feedback obtained from practitioners working with this population was implemented in amending the programme and its delivery. Additionally, feedback from patients with other chronic health conditions who used the OHP in previous studies has been implemented to make the programme more user-friendly. Moreover, feedback obtained from participants receiving this programme in this study was implanted immediately and shared with other participants. Finally, this study was overviewed by a data management committee that included two public members with LC, who contributed and provided guidance to support this study.
介绍:长新冠(LC)是一种多系统疾病,症状波动,影响患者的日常活动。目前,尚无针对 LC 的标准化诊断标准或治疗方法。LC-Optimal Health Programme(LC-OHP)旨在支持长新冠患者的心理健康和身体健康。深入了解患者的体验和支持策略对于确定适当的支持措施以指导他们康复至关重要。本研究旨在了解长新冠患者对症状、支持策略和 LC-OHP 的体验和看法。
方法:作为 LC-OHP 更大规模随机对照试验的一部分,干预组的参与者的课程被录音。对记录进行主题分析,以确定常见的新兴主题。
结果:LC-OHP 共为 26 名参与者提供服务。数据收集于 2022 年 1 月至 2023 年 2 月之间。主要有四个主题:“LC 的症状和影响”、“其他支持来源和感知挑战”、“支持 LC 的策略”和“对 LC-OHP 的看法”。
结论:LC 的体验大多被描述为波动和负担沉重,严重影响日常活动以及身心健康。LC-OHP 被认为是有益的。获取和体验其他支持来源各不相同。提高医疗保健从业者和更广泛社区对 LC 的认识有潜力改善受 LC 影响的人群的体验。
患者或公众贡献:LC-OHP 源自 OHP。在与 LC 诊所的从业者协商后,对其进行了调整,以适用于长新冠患者。此外,还考虑到疲劳和脑雾是长新冠患者最常报告的投诉之一,因此未直接让长新冠患者参与本研究;然而,在修改该计划及其实施方式时,考虑到了该人群的从业者的反馈。此外,在之前的研究中使用 OHP 的其他慢性健康状况患者的反馈也已被实施,以使该计划更便于使用。此外,本研究中接受该计划的参与者的反馈立即被实施,并与其他参与者共享。最后,这项研究由一个数据管理委员会进行了审查,该委员会包括两名长新冠患者公众成员,他们提供了意见并提供了指导,以支持这项研究。
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