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)
20 June 2022
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).
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.
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s12886-022-02484-x
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e-pub ahead of print date: 20 June 2022
Published date: 20 June 2022
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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
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Date deposited: 28 Jul 2022 16:48
Last modified: 17 Mar 2024 03:38
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Contributors
Author:
Katherine Rennie
Author:
Rajeeth Alagendran
Author:
Helen Griffiths
Corporate Author: Nystagmus U. K. Eye Research Group (NUKE)
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