Brief overview of the project

mySupport study is an international educational research study designed to support care staff and families in navigating end of life care decisions for a person with advanced dementia.

Description of Public and Patient Involvement (PPI) in this project

As part of the mySupport study, we engaged an international patient and public involvement panel known as the Strategic Guiding Council. The Strategic Guiding Council met monthly over Zoom to advise on the development and implementation of tools and resources, and knowledge dissemination of the mySupport study. The Strategic Guiding Council members advised on data collection tools, methodological designs and are involved in interpreting the results for this international research project. The personal stories and accounts from members remind researchers of the personhood and unique experience of each participant. This interconnection influences our shared understanding and is the perspective needed to bring together change and provides greater understanding.

Who is/was involved?

The Strategic Guiding Council consists of 14 members from six participating countries each member is profiled on our study website https://mysupportstudy.eu/partners/patient-public-involvement-ppi/

The essence of what our members bring to mySupport stems from the bond within each partner site as well as the international partnership.

Challenges and/or solutions

The design of study materials changed as a result of members involvement and also the encouragement from members motivated the researcher team when recruitment was challenging during the pandemic. The positive reinforcement of the need for this research from members emphasised the value of this research for wider communities, namely individuals and their families living with dementia.

What difference did public involvement make?

The involvement of PPI raises expectations of how we connect with people, as we translate and exchange knowledge and learning. What have we got to say? and how do we say it?

A comment by one of our members highlighted the need to reach the ‘heart and minds’ of families and healthcare professionals. These two fundamental aspects for researchers and family caregivers changes the quality of the study and makes it more translatable.

What would you advise researchers about involvement?

The purpose and process requires time, understanding, respect, and cultural awareness to achieve a meaningful connection. Some things can’t be rushed…….

Contact information and related links

• Irene Hartigan or Nicola Cornally, School of Nursing and Midwifery, UCC
• i.hartigan@ucc.ie or n.cornally@ucc.ie
• Study website: https://mysupportstudy.eu/