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‘It would help people to help me’: Acceptability of digital phenotyping among young people with visual impairment and their families

Higgins, B; Jones, L; Devraj, K; Kilduff, C; Moosajee, M; (2024) ‘It would help people to help me’: Acceptability of digital phenotyping among young people with visual impairment and their families. Digital Health , 10 pp. 1-11. 10.1177/20552076231220804. Green open access

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Abstract

Objectives: To explore the acceptability of an eHealth App for vision-related monitoring and symptom reporting among young people with a visual impairment and their parents. Methods: Qualitative investigation using virtual semi-structured focus groups (via Zoom software) of seven young participants with a genetic eye disorder including inherited retinal disease and structural eye abnormalities (e.g. microphthalmia), and 7 parents; all recruited from ocular genetic clinics at Moorfields Eye Hospital. Audio transcripts were analysed using thematic analysis. Results: Data were coded into six key themes: (1) increased involvement in care, (2) opportunity for less hospital-centric care, (3) better representation of visual impairment in a real-world setting, (4) trust in a reputable service provider, (5) harnessing data for health purposes and (6) intended purpose of the app. Both young people and their families were accepting of an eHealth app and felt they would be empowered by greater involvement in their care plan, if privacy of the data was retained, and information was managed correctly. While parents endorsed the opportunity for mental health tracking, young people were hesitant towards its inclusion. Conclusion: In summary, there was overall acceptability of an eHealth app among young people with a visual impairment and their parents. These findings will help to maximise the effective integration of digital phenotyping when monitoring and supporting young people experiencing sight loss.

Type: Article
Title: ‘It would help people to help me’: Acceptability of digital phenotyping among young people with visual impairment and their families
Location: United States
Open access status: An open access version is available from UCL Discovery
DOI: 10.1177/20552076231220804
Publisher version: http://dx.doi.org/10.1177/20552076231220804
Language: English
Additional information: This work is licensed under a Creative Commons Attribution 4.0 International License. The images or other third-party material in this article are included in the Creative Commons license, unless indicated otherwise in the credit line; if the material is not included under the Creative Commons license, users will need to obtain permission from the license holder to reproduce the material. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/
Keywords: Digital phenotyping, acceptability, eHealth, smartphone application, visual impairment
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
URI: https://discovery.ucl.ac.uk/id/eprint/10185558
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