Kellett, S;
Tadic, V;
Petrushkin, H;
Ashworth, J;
Connor, A;
McLoone, E;
Sharma, S;
... Solebo, AL; + view all
(2024)
Supporting positive patient experiences for rare disease care during disruptive times: findings from a national study.
Future Rare Diseases
, 4
(1)
, Article 2366153. 10.1080/23995270.2024.2366153.
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Abstract
Aim: We describe the perceptions and experiences of healthcare services during the pandemic of those newly diagnosed with a rare, chronic eye disorder. Methods: A cross-sectional mixed-methods study nested within a multi-center inception cohort study. Participants were UK families and adolescents newly affected by childhood uveitis. Using a validated tool (Health Foundation COVID-19 Survey), we captured quantitative (analyzed using descriptive statistics) and qualitative (analyzed using content and thematic analysis) data. Results: Responses received from 60 families (September 2020–March 2022), of whom 92% felt comfortable accessing healthcare services, despite 40% reporting challenges in accessing medication. Thematic analysis identified five themes: the value of protected spaces; the positive role of digital health tools, negative experience of immature telemedicine, disintegration of care; and dealing with uncertainty. Conclusion: Our findings will support ongoing developments in care with an aim to making services more robust to future periods of disruption.
| Type: | Article |
|---|---|
| Title: | Supporting positive patient experiences for rare disease care during disruptive times: findings from a national study |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1080/23995270.2024.2366153 |
| Publisher version: | http://dx.doi.org/10.1080/23995270.2024.2366153 |
| Language: | English |
| Additional information: | Copyright © 2024 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way. The terms on which this article has been published allow the posting of the Accepted Manuscript in a repository by the author(s) or with their consent. |
| Keywords: | Child and family; healthcare disruption; healthcare services; patient experience; telemedicine |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Institute of Ophthalmology UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Population, Policy and Practice Dept |
| URI: | https://discovery-pp.ucl.ac.uk/id/eprint/10194579 |
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