Project Summary

Background: During the COVID-19 pandemic, healthcare systems implemented changes to family presence policies to control infection. Families were not allowed to be present with other family members. Changes were made without patient and family input. Emerging data highlight the harms of restrictions to patients, families, and clinicians, but this topic has not been studied through PCOR/CER.

Proposed Solution to the Problem: This project will engage key stakeholders to learn from their experiences about the impact of different approaches to family presence. Potential research questions important to patients and families, especially those disproportionately affected by COVID-19, will be elicited and prioritized to inform future PCOR/CER.


  • Prepare three health systems to engage in future PCOR/CER about family presence
  • Prepare patients and families to share experiences of hospitalization during COVID-19 and the impact of different approaches to family presence
  • Identify and prioritize research questions to inform future PCOR/CER on the impact of different approaches
  • Identify strategies for engaging stakeholders, especially patients and families from diverse and underserved populations, in PCOR/CER


  • Create multi-stakeholder core teams to collaborate with IPFCC in project activities
  • Prepare patient/family partners from populations disproportionately affected by COVID-19
  • Convene meetings to elicit experiences, summarize themes, and develop potential research questions
  • Develop and disseminate a report summarizing research questions to inform future PCOR/CER
  • Create and disseminate a tool with strategies for involving patients and families in PCOR/CER

Projected Outcomes and Outputs:

  • Report summarizing potential research questions and tool with strategies for engaging stakeholders
  • Teams prepared to engage in future PCOR/CER on impact of restrictions on family presence in hospitals; collaborative relationships built between teams
  • 21 patients/families with increased knowledge about PCOR/CER process
  • Three health systems with better understanding of impact of restrictions on family presence, informing institutional decision making and raising interest in PCOR/CER
  • Increased interest of other health systems in PCOR/CER; funders support research
  • Broader awareness of impact of restrictions on family presence
  • Strong evidence base about the impact of approaches to family presence to inform the field

Patient and Stakeholder Engagement Plan: Core teams from three healthcare systems will include key stakeholders—clinician, front-line staff member, researcher, coordinator of patient and family advisory program or staff member from the diversity/inclusion department, and two patient and family partners. Each team will be prepared to: recruit and support patient and family members to participate; co-facilitate meetings; collaborate in developing resources.

Patients and families, representative of communities served by the health systems and who were hospitalized due to COVID-19, will be recruited and supported to actively participate and share their experiences and the impact of different approaches to family presence. They will participate in refining themes that surface from their experiences and help develop research questions for future PCOR/CER.

Project Collaborators: IPFCC will collaborate with Intermountain Healthcare; Prisma Health/University of South Carolina School of Medicine Greenville; Michigan Medicine/Michigan Health & Hospital Association Keystone Center.

Project Information

Deborah Dokken, MPA
Institute for Patient- and Family-Centered Care

Key Dates

April 2023


Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: April 3, 2024