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.
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.
| Original language | English |
|---|---|
| Article number | 2366153 |
| Number of pages | 13 |
| Journal | Future Rare Diseases |
| Volume | 4 |
| Issue number | 1 |
| Early online date | 3 Jul 2024 |
| DOIs | |
| Publication status | E-pub ahead of print - 3 Jul 2024 |
Bibliographical note
Publisher Copyright:© 2024 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.