Through Their Eyes: Using Photovoice to Capture the Capacity-Building Journey of Long Covid Patient Experts

IF 3 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

Health Expectations Pub Date : 2024-11-11 DOI:10.1111/hex.70094

Nabil Natafgi, Katie Parris, Erin Walker, Tracey Gartner, Jeanette Coffin, Ariana Mitcham, Luis Sanchez Ferrer, Maushmi K. Patel, Haley Wymbs, Ann Blair Kennedy

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引用次数: 0

Abstract

Background

Long Covid, characterised by persistent symptoms following the coronavirus disease 2019 (COVID-19) infection, significantly impacts the quality of life. Engaging patients in research and care through participatory methods can enhance a shared understanding of illness and improve the relevance of research.

Objective

We define Patient Experts (PEs) as persons (including patients, caregivers and providers) who have completed a series of training sessions on team building, research methods and communication at the Patient Engagement Studio, University of South Carolina (PES USC). This study explores the use of photovoice to document the experiences and capacity-building journey of Long Covid PEs within PES USC.

Methods

The study employed photovoice within the COVID-19-Focused Virtual Patient Engagement Studio (CoVIP Studio). PEs submitted photographs and narratives at two distinct time points. Among the 18 PEs who participated in the project, 47 photos were collected during the training, and 31 were collected at the project's conclusion. Thematic analysis was conducted to capture changes in patient perspectives and engagement.

Results

Initial themes identified were “Hope through Community,” “Collaborative Education and Research” and “Strength and Endurance.” By the project's end, themes had evolved to “Working as a Team to Share and Acquire Knowledge,” “Enhanced Confidence in the Future of Care” and “Perseverance and Progress.” These findings highlight the transformative impact of patient engagement and the utility of photovoice in documenting longitudinal shifts in patient perspectives.

Conclusion

Photovoice effectively engaged Long Covid patients and captured their evolving roles and perceptions as PEs. The study underscores the value of patient-led participatory methods in enhancing the relevance and applicability of clinical research, advocating for their broader adoption to improve patient-centred care and research outcomes.

Patient or Public Contribution

A CoVIP Studio stakeholder advisory board (CoVIP SAB) guided the co-development and implementation of this project. The CoVIP SAB comprised nine members with complementary skills and expertise, including three patients, three clinicians who provide care to patients with COVID-19 and three researchers with expertise in patient-centred research, COVID-19 and/or patient engagement and collaborate with patients as co-investigators. The board contributed to project design and implementation, refining photovoice prompts and shaping dissemination strategies. In addition, one PE who actively participated in all phases of the project contributed to the writing of this paper and is a coauthor. All project activities involved patients and/or caregivers with lived experience of Long Covid.

Abstract Image

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通过他们的眼睛：使用摄影 "选择"（Photovoice）来捕捉长期病患专家的能力建设历程。

背景：冠状病毒病2019（COVID-19）感染后症状持续存在的长Covid严重影响了患者的生活质量。通过参与式方法让患者参与到研究和护理中来，可以增强对疾病的共同理解，提高研究的相关性：我们将患者专家（PEs）定义为在南卡罗来纳大学患者参与工作室（PES USC）完成一系列关于团队建设、研究方法和沟通培训课程的人（包括患者、护理人员和医疗服务提供者）。本研究探讨了如何利用摄影oice 记录南卡罗来纳大学患者参与工作室内的长科维德 PE 的经历和能力建设历程：本研究在以 COVID-19 为重点的虚拟患者参与工作室（CoVIP Studio）中使用了摄影舆论。患者在两个不同的时间点提交照片和叙述。在参与项目的 18 名 PE 中，培训期间收集了 47 张照片，项目结束时收集了 31 张照片。我们进行了主题分析，以捕捉患者观点和参与度的变化：最初确定的主题是 "社区带来的希望"、"合作教育与研究 "和 "力量与耐力"。到项目结束时，主题已发展为 "团队合作，分享和获取知识"、"增强对未来护理的信心 "和 "坚持不懈，不断进步"。这些发现凸显了患者参与的变革性影响，以及摄影舆论在记录患者观点纵向转变方面的实用性：Photovoice 有效地吸引了 Long Covid 患者的参与，并捕捉到了他们作为 PE 不断变化的角色和看法。这项研究强调了以患者为主导的参与式方法在提高临床研究的相关性和适用性方面的价值，倡导更广泛地采用这些方法来改善以患者为中心的护理和研究成果：CoVIP 工作室利益相关者咨询委员会（CoVIP SAB）为该项目的共同开发和实施提供了指导。CoVIP SAB 由九名具有互补技能和专业知识的成员组成，其中包括三名患者、三名为 COVID-19 患者提供护理的临床医生以及三名在以患者为中心的研究、COVID-19 和/或患者参与方面具有专长并与患者作为共同研究者开展合作的研究人员。委员会对项目的设计和实施、照片选择提示的改进和传播策略的制定都做出了贡献。此外，一名积极参与项目各个阶段的 PE 参与了本文的撰写，并成为本文的共同作者。所有项目活动都有患者和/或护理人员参与，他们都有 Long Covid 的亲身经历。

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来源期刊

Health Expectations 医学-公共卫生、环境卫生与职业卫生

CiteScore

5.20

自引率

9.40%

发文量

251

审稿时长

>12 weeks

期刊介绍： Health Expectations promotes critical thinking and informed debate about all aspects of patient and public involvement and engagement (PPIE) in health and social care, health policy and health services research including: • Person-centred care and quality improvement • Patients'' participation in decisions about disease prevention and management • Public perceptions of health services • Citizen involvement in health care policy making and priority-setting • Methods for monitoring and evaluating participation • Empowerment and consumerism • Patients'' role in safety and quality • Patient and public role in health services research • Co-production (researchers working with patients and the public) of research, health care and policy Health Expectations is a quarterly, peer-reviewed journal publishing original research, review articles and critical commentaries. It includes papers which clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The Journal provides an inter-disciplinary and international forum in which researchers (including PPIE researchers) from a range of backgrounds and expertise can present their work to other researchers, policy-makers, health care professionals, managers, patients and consumer advocates.