Kellett, Salomey, Tadic, Valerija ORCID: 0000-0003-3982-0340 , Petrushkin, Harry, Ashworth, Jane, Connor, Alan, McLoone, Eibhlin, Sharma, Srilakshmi, Agorogiannis, Eleftherios, Watts, Patrick, Hughes, Edward, Ritchie, Ailsa, Pilling, Rachel, Benzimra, James, Marsh, Catherine, Pharoah, Daniel, Choi, Jessy, Dick, Andrew, Rahi, Jugnoo and Solebo, Ameenat (2024) Supporting positive patient experiences for rare disease care during disruptive times: findings from a national study. Future Rare Diseases, 4 (1). pp. 1-13. ISSN 2399-5270 (Online) (doi:https://doi.org/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.

Item Type:	Article
Uncontrolled Keywords:	child and family; healthcare disruption; healthcare services; patient experience; telemedicine
Subjects:	B Philosophy. Psychology. Religion > BF Psychology R Medicine > R Medicine (General) R Medicine > RT Nursing
Faculty / School / Research Centre / Research Group:	Faculty of Education, Health & Human Sciences Faculty of Education, Health & Human Sciences > Institute for Lifecourse Development Faculty of Education, Health & Human Sciences > Institute for Lifecourse Development > Centre for Vulnerable Children and Families Faculty of Education, Health & Human Sciences > School of Human Sciences (HUM)
Related URLs:	Publisher
Last Modified:	05 Jul 2024 13:27
URI:	http://gala.gre.ac.uk/id/eprint/47567

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