Article Text

Download PDFPDF
52 Motivations and impact of the strategic guiding council: an international patient and public involvement panel for long-term care research during the COVID-19 pandemic
  1. Danielle Just1,2,
  2. Bianca Tétrault3,
  3. Tamara Sussman3 and
  4. Sharon Kaasalainen2
  1. 1Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Canada
  2. 2Faculty of Health Sciences, School of Nursing, McMaster University, Canada
  3. 3School of Social Work, McGill University, Canada


Introduction The Strategic Guiding Council is an international patient and public involvement (PPI) panel that was formed to consult on the implementation of a long-term care (LTC) caregiver support intervention, known as the Family Carer Decision Support (FCDS) study. The FCDS study was implemented in Canada, Ireland, the United Kingdom, the Netherlands, the Czech Republic, and Italy during the COVID-19 pandemic. The study was conducted to assist LTC staff in supporting caregivers to make decisions about end-of-life care for residents with advanced dementia.

Aims This presentation reports on the motivation for creating an internal PPI panel and the significant impact council members had on the FCDS study, specifically during the COVID-19 pandemic.

Method Qualitative description revealed researcher and caregiver motivations for forming the international PPI panel, and the impact this panel had on the FCDS study. Virtual semi-structured interviews were held with FCDS researchers (n=38) and Strategic Guiding Council members (n=14) to explore participants’ perspectives of the PPI panel pre- and post- the FCDS intervention.

Results Project researchers’ motivations include improving credibility to the research by incorporating caregivers’ lived LTC experiences into research processes. The Strategic Guiding Council members’ motivations include improving the LTC experience of families and residents, forming a connection, and improving their own knowledge of educational resources available to support families. Following the intervention, researchers noted how significantly the Strategic Guiding Council impacted the FCDS invention by providing insight into the local level and cultural differences of the six participating counties.

Conclusion An international patient involvement panel can inform research to improve LTC resident and caregiver outcomes at the local level.

Impact Lessons learned from the Strategic Guiding Council will be applied to future research studies to ensure PPI is incorporate in future LTC and international research projects.

Statistics from

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.