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Involving People with Communication Difficulties as PPI Contributors in Palliative Care Research

Event, held 9th October 2023

Introduction:

This event was held in the Ashling Hotel on the 9th of October 2023. The aim of this event was to build awareness of how to conduct research in palliative care involving people with communication difficulties. Communication difficulties are a common barrier to participation of people in both research and palliative care research, and this event explored effective ways of working with people with communication difficulties, how to overcome barriers and how to build capacity within palliative care research to support people with communication difficulties.

Audience:

There were 36 participants including people with communication difficulties, Voices 4Care members, researchers from Early Career Researcher Forum (ECRF) and Palliative Care Research Network (PCRN) members, other researchers, speech and language therapists, health and social care professionals, charity representatives and policymakers. People with the living experience of having communication difficulties and researchers presented on their experiences of working together on health and palliative care research projects. This gave a direct insight into how to improve the involvement of people with communication difficulties, the research process and how to maximise the impact of the research.

Programme:

The programme for the event is available here.

Slides and Videos:

Opening

John Joyce, Voices4Care member and Mary Rabbitte, Research Programme Manager, AIIHPC jointly opened the event. View slides here, John’s video here and Mary’s video here.

Introduction to PPI in research

Lucy Whitson, PPI Ignite Programme Manager, Dublin City University provided information on what PPI is and why it is important. View Lucy’s slides here and video here.

Research and people with communication difficulties – why does it matter?

Nicole Müller, Professor and Head of Speech and Hearing Sciences in the School of Clinical Therapies, University College Cork spoke about communication, cognition and language, communication disorder and disability, and why it matters. View Nicole’s slides here and video here.

Involving People with Communication Needs in Research from Individual and Researcher Perspectives (1)

MK Clancy, PPI speaker and Lesley Doyle, Senior Speech and Language Therapist and PhD Candidate, Trinity College Dubin shared their experiences of working together in research, challenges, and opportunities. View slides here and video here.

Involving People with Communication Needs in Research from Individual and Researcher Perspectives (2)

Michael Griffin, PPI speaker and Yvonne Fitzmaurice, Senior Speech and Language Therapist and PhD Candidate, University of Galway shared their experiences of working together in research, challenges, and opportunities. View slides here.

Panel Discussion

John Joyce, AIIHPC Voices4Care, Amanda Drury, Associate Professor in Nursing, Dublin City University, Áine Kearns, Lecturer and Course Director Speech and Language, University of Limerick, and Orla Duffy, Lecturer Speech and Language Therapy, Ulster University discussed the involvement of people with communication difficulties in research, chaired by Karen Charnley, Director of AIIHPC.

Open Space Session

Emer Brangan, Research Impact Project Manager, AIIHPC facilitated group work activity on Identifying the challenges, benefits, and opportunities of working together. View slides here.

Where to go from here

Carol Kelleher Senior Lecturer Service Management and Design and Lead of the PPI Ignite Network, University College Cork presented the closing comments and observations. View Carol’s video here.

Acknowledgements:

AIIHPC would like to acknowledge the support of University College Cork and Dublin City University PPI Ignite programmes for their involvement in this co-produced event. We would like to thank all our speakers, panel members and participants on the day. We would like to especially thank Aisling O’Neill for her support in developing the event during her time with AIIHPC as the PPI UCC student summer scholar 2023.