Participant engagement in a national longitudinal study of COVID-19: Insights from the INSPIRE study.
<h4>Objective</h4>To examine participants' motivations and their experiences throughout a decentralized, longitudinal COVID-19 study in the U.S.<h4>Methods</h4>We recruited 355 participants from the Innovative Support for Patients with SARS-CoV-2 Infections Registry (INS...
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| Format: | Article |
| Language: | English |
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Public Library of Science (PLoS)
2025-01-01
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| Series: | PLoS ONE |
| Online Access: | https://doi.org/10.1371/journal.pone.0325948 |
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| author | Kris Pui Kwan Ma Tracy Stober Michael Gottlieb Rachel E Geyer Kristin Rising Sharon Saydah Michelle Santangelo Kristyn Gatling Dylan Grau Ralph C Wang Juan Carlos Montoy Ahamed Idris Samuel MacDonald Mandy J Hill Ryan Huebinger Maria G Prado Nicole L Gentile Erica Spatz Caitlin Maliki Jocelyn Dorney Joann G Elmore Michelle L'Hommedieu Robert A Weinstein Arjun K Venkatesh Kari A Stephens INSPIRE Group |
| author_facet | Kris Pui Kwan Ma Tracy Stober Michael Gottlieb Rachel E Geyer Kristin Rising Sharon Saydah Michelle Santangelo Kristyn Gatling Dylan Grau Ralph C Wang Juan Carlos Montoy Ahamed Idris Samuel MacDonald Mandy J Hill Ryan Huebinger Maria G Prado Nicole L Gentile Erica Spatz Caitlin Maliki Jocelyn Dorney Joann G Elmore Michelle L'Hommedieu Robert A Weinstein Arjun K Venkatesh Kari A Stephens INSPIRE Group |
| author_sort | Kris Pui Kwan Ma |
| collection | DOAJ |
| description | <h4>Objective</h4>To examine participants' motivations and their experiences throughout a decentralized, longitudinal COVID-19 study in the U.S.<h4>Methods</h4>We recruited 355 participants from the Innovative Support for Patients with SARS-CoV-2 Infections Registry (INSPIRE) between November 2022 - March 2023 to answer five qualitative survey questions anonymously. We used an inductive content analysis approach to analyze the data.<h4>Results</h4>We identified five key themes from the analysis, which reflected participants' a) motivations to join the study, b) study benefits, c) perceptions of survey questions, d) experiences with the research process, and e) preferences for disseminating research findings. Participants were motivated to learn with researchers about COVID-19. They expressed divided opinions about the relevance of INSPIRE research questions. They reported difficulties navigating the virtual research platform and the need for making survey participation less cognitively demanding. They sought more regular feedback on study findings.<h4>Conclusions</h4>Our findings offered insights into incorporating decentralized participatory methods in longitudinal research, strengthening reciprocal research communications, making virtual research platforms user-friendly, and employing strategies to reduce participants' cognitive burden in research.<h4>Policy implications</h4>Longitudinal studies should focus on optimizing these aspects of participant engagement to produce rigorous findings that inform policy and practice on lasting effects of COVID-19 including Long COVID. |
| format | Article |
| id | doaj-art-0bd205fd22ff4125bdf90ec765b8038e |
| institution | DOAJ |
| issn | 1932-6203 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | Public Library of Science (PLoS) |
| record_format | Article |
| series | PLoS ONE |
| spelling | doaj-art-0bd205fd22ff4125bdf90ec765b8038e2025-08-20T02:47:38ZengPublic Library of Science (PLoS)PLoS ONE1932-62032025-01-01207e032594810.1371/journal.pone.0325948Participant engagement in a national longitudinal study of COVID-19: Insights from the INSPIRE study.Kris Pui Kwan MaTracy StoberMichael GottliebRachel E GeyerKristin RisingSharon SaydahMichelle SantangeloKristyn GatlingDylan GrauRalph C WangJuan Carlos MontoyAhamed IdrisSamuel MacDonaldMandy J HillRyan HuebingerMaria G PradoNicole L GentileErica SpatzCaitlin MalikiJocelyn DorneyJoann G ElmoreMichelle L'HommedieuRobert A WeinsteinArjun K VenkateshKari A StephensINSPIRE Group<h4>Objective</h4>To examine participants' motivations and their experiences throughout a decentralized, longitudinal COVID-19 study in the U.S.<h4>Methods</h4>We recruited 355 participants from the Innovative Support for Patients with SARS-CoV-2 Infections Registry (INSPIRE) between November 2022 - March 2023 to answer five qualitative survey questions anonymously. We used an inductive content analysis approach to analyze the data.<h4>Results</h4>We identified five key themes from the analysis, which reflected participants' a) motivations to join the study, b) study benefits, c) perceptions of survey questions, d) experiences with the research process, and e) preferences for disseminating research findings. Participants were motivated to learn with researchers about COVID-19. They expressed divided opinions about the relevance of INSPIRE research questions. They reported difficulties navigating the virtual research platform and the need for making survey participation less cognitively demanding. They sought more regular feedback on study findings.<h4>Conclusions</h4>Our findings offered insights into incorporating decentralized participatory methods in longitudinal research, strengthening reciprocal research communications, making virtual research platforms user-friendly, and employing strategies to reduce participants' cognitive burden in research.<h4>Policy implications</h4>Longitudinal studies should focus on optimizing these aspects of participant engagement to produce rigorous findings that inform policy and practice on lasting effects of COVID-19 including Long COVID.https://doi.org/10.1371/journal.pone.0325948 |
| spellingShingle | Kris Pui Kwan Ma Tracy Stober Michael Gottlieb Rachel E Geyer Kristin Rising Sharon Saydah Michelle Santangelo Kristyn Gatling Dylan Grau Ralph C Wang Juan Carlos Montoy Ahamed Idris Samuel MacDonald Mandy J Hill Ryan Huebinger Maria G Prado Nicole L Gentile Erica Spatz Caitlin Maliki Jocelyn Dorney Joann G Elmore Michelle L'Hommedieu Robert A Weinstein Arjun K Venkatesh Kari A Stephens INSPIRE Group Participant engagement in a national longitudinal study of COVID-19: Insights from the INSPIRE study. PLoS ONE |
| title | Participant engagement in a national longitudinal study of COVID-19: Insights from the INSPIRE study. |
| title_full | Participant engagement in a national longitudinal study of COVID-19: Insights from the INSPIRE study. |
| title_fullStr | Participant engagement in a national longitudinal study of COVID-19: Insights from the INSPIRE study. |
| title_full_unstemmed | Participant engagement in a national longitudinal study of COVID-19: Insights from the INSPIRE study. |
| title_short | Participant engagement in a national longitudinal study of COVID-19: Insights from the INSPIRE study. |
| title_sort | participant engagement in a national longitudinal study of covid 19 insights from the inspire study |
| url | https://doi.org/10.1371/journal.pone.0325948 |
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