Author: Dr Irene Hartigan & Dr Rene Gonzales, University College Cork
Author: Bianca Tétrault, Social Work Intern, McGill University, Montreal, Canada
Author: Dr. Sharon Kaasalainen, McMaster University, Ontario, Canada
Keywords: Patient and Public Involvement, family carers, research engagement, co-creation
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 caregiver support intervention, known as the Studie mySupport.
The following podcast is a recording from the Strategic Guiding Council (SGC) of their experience of been part of a research study and represents some of the partnering countries, England, Canada and Ireland. The host was by Bianca Tétrault from the School of Social Work at McGill University, Montreal Quebec in Canada. More about how this international PPI group was developed can be read in a blog by Danielle Just, McMaster University and Emily Di Sante, McMaster University.
Why use the term Strategic Guiding Council (SGC) instead of Patient and Public Involvement (PPI)?
The Strategic Guiding Council is a label that the group gave themselves after much discussion as they felt it ‘fit’ them better than simply saying they were a PPI panel. We encouraged them to self-identify as a way to build cohesion within the group and use the opportunity to define themselves. The Strategic Guiding Council offered a space where family carers with experience caring for persons living with dementia in long-term care homes shared their thoughts about different research activities of the mySupport Study.
What is the purpose of involving patients or public laypeople in research?
Patient and public involvement in research refers to the inclusion of patients or public laypeople as partners in the various stages of the research process, or as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them” 1. The personal stories and accounts from members remind researchers of the personhood and unique experience of each participant. This interconnection influenced shared understanding and is the perspective needed to bring carers and researcher worlds together.
The mySupport study Strategic Guiding Council or public laypeople worked alongside the research team to guide and inform decisions about aspects of mySupport study. Members had the opportunity to influence the research and its outputs, including reviewing study materials, advising on ways to reach people who may want to participate in this study, or benefit from the outputs and findings.
What did the experience offer?
The Strategic Guiding Council members’ motivations to be involved in the mySupport study included improving the LTC experience of families and residents, forming a connection, and improving their own knowledge of educational resources available to support families. Members valued the opportunity to contribute to research and help shape future care for people with advanced dementia and their carers.
Six recommendations were developed by the Strategic Guiding Council for researchers to consider when engaging PPI members in research.
|Recommendations for researchers to consider when engaging patients or public laypeople in research
|1.Researchers should conduct an orientation that covers the research process, participating in meetings, and communication via email and teleconferences. Communication between Strategic Guiding Council members and projects researchers should be strong and consistent.
|2.The following elements should be clearly communicated to members: the research timeline, the role of PPI, the role of project researchers, the confidentiality, risks and benefits of PPI.
|3.Researchers should pre-plan the PPI involvement for every phase of the research project. This planning should consider the accessibility of team meetings for PPI members and a degree of flexibility in order to accommodate the needs of members (physical and cognitive needs).
|4.PPI meetings should be facilitated by an experienced individual, who has a high level of emotional intelligence. The facilitator should utilize appropriate language and body language in order to make the member feel comfortable and at ease.
|5.The research team should be mindful of the expected and unexpected burden placed on PPI participants. PPI supports should be available for at every phase of the research process.
|6.The reimbursement of travel costs and monetary compensation for PPI should be transparent and optional. Individual countries should base the reimbursement of travel costs and monetary compensation on pre-existing national guidelines. If national guidelines are not available, countries should consider using either their individual universities guidelines for research study participants or follow the precedence set forth by the United Kingdom or Canadian teams as an example.
- Skovlund, P. C., Nielsen, B. K., Thaysen, H. V., Schmidt, H., Finset, A., Hansen, K. A., & Lomborg, K. (2020). The impact of patient involvement in research: a case study of the planning, conduct and dissemination of a clinical, controlled trial. Research involvement and engagement, 6(1), 1-16.
Listen to the podcast here
Dr Irene Hartigan is a Lecturer at the Catherine McAuley School of Nursing and Midwifery, University College Cork. Over the last 5 years, Irene has been involved in several research projects on dementia. Irene has led several initiatives as part of the knowledge translation and exchange activities, this involved setting up a patient and public involvement group and co-designing the project materials. Irene is a member of PPI Ignite @UCC, a funded project in UCC to develop patient and public involvement in research. Irene has substantial experience in health ageing research and factors associated with end of life for older adults.
Dr Rene Gonzales is a Post-Doctoral researcher in collaboration with the School of Nursing and Midwifery at University College Cork, with a focus on Knowledge Transfer and Exchange and the use of multimedia for dissemination. Rene has extensive multimedia production skills and abilities as well as PhD in medicine.
Dr. Sharon Kaasalainen is full Professor with school of Nursing at McMaster University in Canada and partner lead for the mySupport Study. Sharon’s research program is focused on improving the quality of life for people living in long term care homes with a particular focus on implementing a palliative approach in dementia care. Sharon is a co-lead of the Strengthening a Palliative Approach in Long-Term Care (SPA-LTC) program along with a national team of health and social researchers. Learn more at https://spaltc.ca/.
Bianca is a Registered Social Worker with extensive clinical experience in the field of trauma care. While completing her graduate degree, her grandfather was diagnosed with dementia. This prompted Bianca to shift her area of educational focus to the field of aging and dementia care. Bianca has successfully submitted her Independent Study Project The Experiences of Non-Medical Community and Health Care Based Staff Administering Advance Care Planning with Persons with Dementia: Challenges, Opportunities and Solutions with the support of Project Lead and Associate Professor Dr Tamara Sussman.