Development of an “Aphasia-Accessible Participant in Research Experience Survey” through co-production

ABSTRACT

Introduction

Feedback is essential for the development and enhancement of processes. Everyone who participates in research should have the opportunity to provide feedback on their experiences. This may be more pertinent for those with aphasia, who can face barriers to participation across a language-loaded research process. Their feedback is essential as a means of shaping more inclusive research practices.

Within the United Kingdom (UK), the National Institute for Health Research (NIHR) Clinical Research Networks (CRNs) conduct an annual “Participant in Research Experience Survey” (PRES). This survey collects feedback on the experiences of research participants who have taken part in NIHR-funded research with the aim of making improvements to the way NIHR research is conducted. It was identified by research nurses who administered the PRES that the initial adult version of the survey was inaccessible to people with aphasia. Therefore, the aim of this project was to co-produce an aphasia-accessible PRES, with a range of stakeholders, including people with aphasia, which could be implemented by the NIHR. The aim of this paper is to share our experiences and describe the process of co-producing the “Aphasia-Accessible PRES”. Finally, we provide a critical review of our processes to contribute to the development of Patient and Public Involvement and co-production in the areas of stroke and aphasiology.

Methods

A team of stakeholders came together to co-produce an aphasia-accessible PRES guided by their varying perspectives, knowledge and expertise. The team included representatives from the NIHR CRN Eastern, people with varying presentations and severities of aphasia (mild-severe), family members, academics and clinicians. During the co-production of the aphasia-accessible PRES, procedures, activities and materials were adapted, and supported communication techniques used, to promote accessibility and inclusion.

Outcomes

An aphasia-accessible PRES in both paper and digital formats and guidance for the implementation and administration of the survey were iteratively co-produced. Reflecting on the process of co-production and the adaptations made to ensure inclusivity, we identified that co-production can be resource-intensive and requires researcher commitment. To do this, there needs to be clear consideration of the motivations, expectations, ethical implications and impacts of using co-production for all stakeholders involved in the process.

Conclusions

We have shown that stakeholders from a range of backgrounds, including people with aphasia, can be involved in co-production, and in turn facilitate and promote the inclusion of people with aphasia in the feedback stage of the research cycle.

KEYWORDS:

• Inclusion
• aphasia
• stroke
• co-production
• patient and public involvement

Acknowledgment

The co-authors intended to meet in-person over a series of meetings to develop this manuscript; however, due to COVID-19 this was not possible. Therefore, the authors acknowledge that we were unable to optimally support co-authors with aphasia to contribute to the production of this manuscript, relying instead on email exchanges and online meetings.

The authors would like to thank Helen Macdonald, Chief Operating Officer, NIHR CRN Eastern; Natalie Temple, Stroke and Neurology Research Nurse, North West Anglia NHS Foundation Trust; Claire Lee, Research Nurse, Norfolk and Norwich, University Hospitals NHS Foundation Trust; Amanda Ayers, Clinical Trials Research Nurse, James Paget University Hospital; the Small Grants Team at the NIHR CRN Coordinating Centre; the CRN business intelligence team, and Janice and David Barnston (lived experience of aphasia), for their consultative roles on this project.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1. The Clinical Research Networks form part of the NIHR and are organised by region. They coordinate and support the delivery of high-quality research both by geography and therapy area.

2. Also known as “aphasia-friendly” formats.

3. This paper was written during the COVID-19 pandemic and as a result our meetings occurred using Zoom. The project discussed in this paper occurred before COVID-19 and we were able to complete this work face-to-face. This group were used to interacting together in person, and this point reflects on a time when this was possible.

Additional information

Funding

This project is funded by the National Institute for Health Research (NIHR) Clinical Research Network (CRN) Coordinating Centre Accelerating Digital Small Grants Scheme and the Clinical Research Network Eastern (project name: Aphasia Accessible PRES). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.