The University of Southampton
University of Southampton Institutional Repository

Impact of the COVID-19 pandemic on individuals with nystagmus and an exploration of public assumptions about the condition: an electronic questionnaire study

Impact of the COVID-19 pandemic on individuals with nystagmus and an exploration of public assumptions about the condition: an electronic questionnaire study
Impact of the COVID-19 pandemic on individuals with nystagmus and an exploration of public assumptions about the condition: an electronic questionnaire study

PURPOSE: Nystagmus is a disorder characterized by uncontrolled, rhythmic oscillations of the eyes. It often causes reduced visual function beyond reduced visual acuity alone. There is a paucity of literature regarding the public understanding of nystagmus, and there are no published data on the impact of the COVID-19 pandemic on people living with the condition. This study explores the self-reported impact of the COVID-19 pandemic on those with nystagmus, and examines both public understanding of how nystagmus affects people who have it and the perceptions of public understanding by those with the condition and their carers.

METHODS: A qualitative questionnaire was designed following a stakeholder engagement process. This questionnaire was advertised via social media platforms and charity websites to achieve widespread recruitment. Data were collected between November and December 2020. Participants were divided into two groups based on their response to the question: "Do you, or anyone you know well, have nystagmus?". Questions were posed to participants in a purpose-built, branching survey. The resulting data were analyzed using descriptive and inferential statistical methods.

RESULTS: One thousand six hundred forty-five respondents were recruited, of which 849 (51.6%) answered "Yes" to the initial filtering question. Analysis showed that, broadly, public understanding of nystagmus differs from the perception of it by those with nystagmus and their carers, that the COVID-19 pandemic has had a significant impact on those with nystagmus, and that respondents who have met someone with nystagmus, even briefly, tend to have a greater understanding of the impact of the condition.

CONCLUSION: This study highlights the lack of public awareness regarding nystagmus and suggests opportunities to increase the awareness of nystagmus without the need for extensive knowledge of the condition. The COVID-19 pandemic has posed additional difficulties for those living with nystagmus, which is likely to be comparable among those with similar ocular disorders.

COVID-19, Nystagmus, Public awareness, Survey
Rennie, Katherine
1157a572-b043-453e-a1ad-4fe809256656
Alagendran, Rajeeth
a4fc1b63-9943-454a-bd74-b801590107b3
Lee, Helena
5d36fd1e-9334-4db5-b201-034d147133fb
Griffiths, Helen
a097fdaa-d3d6-49a9-9c69-0e6e5a5d518b
Self, James
0f6efc58-ae24-4667-b8d6-6fafa849e389
Nystagmus U. K. Eye Research Group (NUKE)
Rennie, Katherine
1157a572-b043-453e-a1ad-4fe809256656
Alagendran, Rajeeth
a4fc1b63-9943-454a-bd74-b801590107b3
Lee, Helena
5d36fd1e-9334-4db5-b201-034d147133fb
Griffiths, Helen
a097fdaa-d3d6-49a9-9c69-0e6e5a5d518b
Self, James
0f6efc58-ae24-4667-b8d6-6fafa849e389

Nystagmus U. K. Eye Research Group (NUKE) (2022) Impact of the COVID-19 pandemic on individuals with nystagmus and an exploration of public assumptions about the condition: an electronic questionnaire study. BMC Ophthalmology, 22 (1), [268]. (doi:10.1186/s12886-022-02484-x).

Record type: Article

Abstract

PURPOSE: Nystagmus is a disorder characterized by uncontrolled, rhythmic oscillations of the eyes. It often causes reduced visual function beyond reduced visual acuity alone. There is a paucity of literature regarding the public understanding of nystagmus, and there are no published data on the impact of the COVID-19 pandemic on people living with the condition. This study explores the self-reported impact of the COVID-19 pandemic on those with nystagmus, and examines both public understanding of how nystagmus affects people who have it and the perceptions of public understanding by those with the condition and their carers.

METHODS: A qualitative questionnaire was designed following a stakeholder engagement process. This questionnaire was advertised via social media platforms and charity websites to achieve widespread recruitment. Data were collected between November and December 2020. Participants were divided into two groups based on their response to the question: "Do you, or anyone you know well, have nystagmus?". Questions were posed to participants in a purpose-built, branching survey. The resulting data were analyzed using descriptive and inferential statistical methods.

RESULTS: One thousand six hundred forty-five respondents were recruited, of which 849 (51.6%) answered "Yes" to the initial filtering question. Analysis showed that, broadly, public understanding of nystagmus differs from the perception of it by those with nystagmus and their carers, that the COVID-19 pandemic has had a significant impact on those with nystagmus, and that respondents who have met someone with nystagmus, even briefly, tend to have a greater understanding of the impact of the condition.

CONCLUSION: This study highlights the lack of public awareness regarding nystagmus and suggests opportunities to increase the awareness of nystagmus without the need for extensive knowledge of the condition. The COVID-19 pandemic has posed additional difficulties for those living with nystagmus, which is likely to be comparable among those with similar ocular disorders.

Text
Final pre print version - Accepted Manuscript
Available under License Creative Commons Attribution.
Download (69kB)
Text
s12886-022-02484-x - Version of Record
Available under License Creative Commons Attribution.
Download (687kB)

More information

e-pub ahead of print date: 20 June 2022
Published date: 20 June 2022
Additional Information: Funding Information: The authors would like to thank all the questionnaire participants for their time and contribution to the study. Collaborators: Nystagmus UK Eye Research Group (NUKE): M Theodorou3, H Lee1, J Self1, F Shawkat1, P Carter1, J Erichsen4, M Dunn4, L McIlreavy4, N Thomas4, K Ward4, J Whittle2, J Sanders5, C Harris6, R McLean7, D Lawrence8, S Ricketts9, A Gliksohn10, H Griffiths2, M Thomas8, H Kuht8, H Kubavat9, M Woodhouse4, G Arblaster111Clinical and Experimental Sciences, Faculty of Medicine, University of Southampton, UK2Sheffield Children’s Hospital, Sheffield, UK3Paediatric Ophthalmology and Strabismus, Moorfields Eye Hospital, London, UK4School of Optometry and Vision Sciences, Cardiff University, Cardiff, UK5Patient Representative, Plymouth, UK6Royal Eye Infirmary, Derriford Hospital, Plymouth, UK7University of Leicester, Faculty of Medicine and Biological Sciences, Leicester Royal Infirmary, Leicester, United Kingdom8Albinism Fellowship, UK9Nystagmus Network, UK10Genespoir and Albinism Europe Patient advocate11Orthoptics Department, NHS Foundation Trust, Sheffield Teaching Hospitals, Sheffield, UK Publisher Copyright: © 2022, The Author(s).
Keywords: COVID-19, Nystagmus, Public awareness, Survey

Identifiers

Local EPrints ID: 468039
URI: http://eprints.soton.ac.uk/id/eprint/468039
PURE UUID: 94fc8caf-10d3-440f-a29f-8091de0fb387
ORCID for Helena Lee: ORCID iD orcid.org/0000-0002-2573-9536
ORCID for James Self: ORCID iD orcid.org/0000-0002-1030-9963

Catalogue record

Date deposited: 28 Jul 2022 16:48
Last modified: 17 Mar 2024 03:38

Export record

Altmetrics

Contributors

Author: Katherine Rennie
Author: Rajeeth Alagendran
Author: Helena Lee ORCID iD
Author: Helen Griffiths
Author: James Self ORCID iD
Corporate Author: Nystagmus U. K. Eye Research Group (NUKE)

Download statistics

Downloads from ePrints over the past year. Other digital versions may also be available to download e.g. from the publisher's website.

View more statistics

Atom RSS 1.0 RSS 2.0

Contact ePrints Soton: eprints@soton.ac.uk

ePrints Soton supports OAI 2.0 with a base URL of http://eprints.soton.ac.uk/cgi/oai2

This repository has been built using EPrints software, developed at the University of Southampton, but available to everyone to use.

We use cookies to ensure that we give you the best experience on our website. If you continue without changing your settings, we will assume that you are happy to receive cookies on the University of Southampton website.

×