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- Title
The Impact of COVID-19 on Patient, Family Member, and Stakeholder Research Engagement: Insights from the PREPARE NOW Study.
- Authors
Browne, Teri; Jones, Shamika; Cabacungan, Ashley N.; Lang-Lindsey, Katina; Schmidt, Lana; Jackson, George; Schatell, Dori; Damron, Kelli Collins; Ephraim, Patti L.; Hill-Briggs, Felicia; Bolden, Shakur; Swoboda, Amy; Ruff, Suzanne; Danielson, Patty; Littlewood, Diane; Singer, Dale; Stewart, Stephanie; Vinson, Brandy; Clynes, Diana; Green, Jamie A.
- Abstract
Background: Little is known about the impact of COVID-19 on patient, family member, and stakeholder patient-centered outcomes research engagement. Objective: To answer the research questions: (1) What is the impact of COVID-19 on the lives of patients with kidney disease and their families? (2) What is the impact of COVID-19 on research engagement for patient and family member research team members who are themselves at very high risk for poor COVID-19 outcomes? and (3) How can we help patients, family members, and stakeholder team members engage in research during COVID-19? Design: We conducted virtual semi-structured interviews with patient and family member co-investigators and kidney disease stakeholders from the PREPARE NOW study during November 2020. The interview guide included questions about participants' experiences with the impact of COVID-19 on research engagement. Participants: Seven patient and family member co-investigators and eight kidney disease stakeholders involved in a kidney disease patient-centered outcomes research project participated in the interviews, data analysis, and writing this manuscript. Approach: We used a content analysis approach and identified the main themes using an inductive process. Key Results: Respondents reported three main ways that COVID-19 has impacted their lives: emotional impact, changing behaviors, and changes in health care delivery. The majority of respondents reported no negative impact of COVID-19 on their ability to engage in this research project. Suggestions for patient-centered outcomes research during COVID-19 and other emergencies include virtual research activities; active engagement; and promoting trust, honesty, transparency, and authenticity. Conclusions: COVID-19 has had a significant negative impact on patient, family member, and stakeholder research team members; however, this has not resulted in less research engagement. Trial Registration: Clinicaltrials.gov NCT02722382
- Subjects
COVID-19; MEDICAL care; STAKEHOLDER analysis; COVID-19 pandemic; PATIENT participation
- Publication
JGIM: Journal of General Internal Medicine, 2022, Vol 37, Issue 1, p64
- ISSN
0884-8734
- Publication type
Article
- DOI
10.1007/s11606-021-07077-w