Patient and Public Involvement in Stroke and Aphasia Research: a Thematic Analysis

Thursday, November 10, 2022

1:11 PM – 1:16 PM

Location: Station 5

Presenting Author(s)

Marina Charalambous, MSc, PhDc

Special Teaching Staff, Stroke Aphasia Clinician and Researcher
Department of Rehabilitation Sciences, Cyprus University of Technology; Laboratory of Cognitive and Neurological Sciences, University of Fribourg, Switzerland
Limassol, Limassol, Cyprus

Non-presenting Author(s)

AK

Alexia Kountouris, MA

Social Worker/ Person with Aphasia
Solidarity Network Nicosia In Action, Multifunctional Foundation, Nicosia Municipality, Cyprus
Nicosia, Cyprus
PP

Phivos Phylactou, PhD c

PhD Researcher
Department of Rehabilitation Sciences, Cyprus University of Technology, Cyprus
JA

Jean- Marie Annoni, PhD

Professor of Neurology
Section of Medicine, University of Fribourg, Switzerland
Fribourg, Switzerland
MK

Maria Kambanaros, PhD

Professor of Speech Pathology
Department of Rehabilitation Sciences, Cyprus University of Technology
Limassol, Cyprus

Research Objectives: To explore the views of people who live with chronic stroke and aphasia on their potential involvement as research partners.

Design: Qualitative study: semi-structured interviews. Participatory research model with a Patient and Public Involvement (PPI) partner: a person with chronic stroke-induced aphasia.

Setting: On line interviews (zoom).

Participants: Inclusion criteria:
(1) to have experienced a stroke,
(2) to be in the chronic stage of stroke (> 6 months post-stroke)
(3) to speak, understand, read, and write English post-stroke
(4) to be socially active as confirmed from the case history
(5) to have at least one academic qualification, and
(6) to have had previous research experience, whether as students or as researchers.
An additional inclusion criterion for PWA was to show evidence, from case history interviews, of mild-moderate chronic aphasia.

Participants: Eight people with chronic stroke, four with concomitant aphasia and four without.

Interventions: N/A

Main Outcome Measures: A thematic analysis following Braun and Clarke 6-step framework. Implementation of outcomes on the International Classification of disability F framework.

Results: Inductive thematic analysis generated four themes:
(1) the kinds of Restrictions that make involvement in research difficult,
(2) the preferred levels and ways of Involvement during the research process,
(3) the Support required for active and collaborative involvement, and
(4) the Impact of their involvement and how it benefits the study’s outcomes.

Conclusions: People living with chronic stroke and aphasia are willing to be involved in PPI stroke and aphasia studies, if researchers provide the necessary robust support environment. The findings provide new evidence about how patient partnership models can support people with chronic communication deficits to contribute meaningfully to co-produced research.

Author(s) Disclosures: The authors declared no potential conflict of interest with respect to the research, authorship, and/or publication of this article.

Learning Objectives:

Upon completion, participant will be able to identify the factors that hinder or promote the active involvement of stroke survivors with and without aphasia in Patient and Public Involvement studies.
Upon completion, participant will be provided with the BEFORE recommendations of practical guidance for researchers to consider before commencing Patient and Public Involvement research with people with stroke and aphasia.
Upon completion, participant will be informed on the impact of meaningful Patient and Public Involvement contributions to research practices, end-users and the stroke and aphasia society.