Through Their Eyes: Using Photovoice to Capture the Capacity‐Building Journey of Long Covid Patient Experts.
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 rele...
| Publicado en: | Health Expectations Vol. 27; no. 6; pp. 1 - 19 |
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| Autores principales: | , , , , , , , , , |
| Formato: | pictorial research tables/charts Journal Article |
| Publicado: |
Wiley-Blackwell
Dec2024
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=181889855&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 181889855 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 13696513 EVY jtl: Health Expectations issn: 13696513 maglogo: Y pubinfo: dt: Dec2024 vid: 27 iid: 6 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 181889855 181889855 181889855 10.1111/hex.70094 181889855 ppf: 1 ppct: 18 formats: fmt: – @attributes: type: T – @attributes: type: C – @attributes: type: P tig: atl: Through Their Eyes: Using Photovoice to Capture the Capacity‐Building Journey of Long Covid Patient Experts. aug: au: Natafgi, Nabil Parris, Katie Walker, Erin Gartner, Tracey Coffin, Jeanette Mitcham, Ariana Ferrer, Luis Sanchez Patel, Maushmi K. Wymbs, Haley Kennedy, Ann Blair affil: Department of Health Services, Policy, and Management, University of South Carolina, Columbia South Carolina,, USA sug: subj: Post-Acute COVID-19 Syndrome Psychosocial Factors Research Subjects Psychosocial Factors Patients Psychosocial Factors Caregivers Psychosocial Factors Physicians Psychosocial Factors Organizational Development Human Research Personnel Qualitative Studies Photography Narratives Thematic Analysis Descriptive Statistics Hope Confidence Trust Funding Source Stakeholder Participation Communication Skills Training Physician-Patient Relations Professional-Family Relations Team Building Education Storytelling COVID-19 Psychosocial Factors Patient Attitudes Patient Participation Collaboration ab: 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. pubtype: Academic Journal doctype: pictorial research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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