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What support do caregivers of people with visual impairment receive and require? An exploratory study of UK healthcare and charity professionals’ perspectives

Enoch, J. ORCID: 0000-0002-4614-6676, Dickinson, C. and Subramanian, A. ORCID: 0000-0001-8104-5312 (2021). What support do caregivers of people with visual impairment receive and require? An exploratory study of UK healthcare and charity professionals’ perspectives. Eye, doi: 10.1038/s41433-021-01821-6

Abstract

Background
Previous research has established that some informal caregivers (relatives/friends) of people with visual impairment (PVI) may require support themselves. However, there is limited understanding of how healthcare services and sight charities in the UK currently support caregivers. This study was therefore conducted to explore what support, information, and advice healthcare and charity professionals (HCCPs) currently provide for caregivers, and which additional support HCCPs would recommend in order to benefit caregivers.

Methods
HCCPs filled out an online survey, distributed among UK-based professional bodies and charity partners. Of 104 individuals who consented to participate, 68 (65%) HCCPs completed the survey in September–November 2019. Participants responded to Likert-type questions about how they interact with and support caregivers of PVI. Thirty-eight (56%) participants provided responses to open-ended questions about improving support for caregivers; qualitative analysis was conducted using the Framework Method.

Results
The survey showed that caregiver support activities most commonly undertaken related to onward signposting (90% (95% CI: 82–97%) of participants), or providing information about low vision aids and adaptations (85% (95% CI: 77–94%)), compared to activities focused on broader caregiver wellbeing. In open-ended responses, HCCPs highlighted the difficulties caregivers face in navigating an under-resourced and complex system. They recommended improving coordination and accessibility of information, as well as provision of emotional support and tangible assistance such as respite care and financial support.

Conclusions
The study suggests that HCCPs perceive significant unmet needs among caregivers of PVI, and would welcome further resources, information, and training to support caregivers.

Publication Type: Article
Additional Information: This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0. This article has been published in Eye, DOI: https://doi.org/10.1038/s41433-021-01821-6
Publisher Keywords: Eye diseases, Health services, Quality of life
Subjects: R Medicine > RC Internal medicine
R Medicine > RE Ophthalmology
Departments: School of Health Sciences > Optometry & Visual Science
Date available in CRO: 08 Nov 2021 09:57
Date deposited: 8 November 2021
Date of acceptance: 14 October 2021
Date of first online publication: 6 November 2021
URI: https://openaccess.city.ac.uk/id/eprint/27071
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