The University of Southampton
University of Southampton Institutional Repository

Eye donation in hospice and hospital palliative care settings: perceptions, practice, and service development needs – findings from a national survey

Eye donation in hospice and hospital palliative care settings: perceptions, practice, and service development needs – findings from a national survey
Eye donation in hospice and hospital palliative care settings: perceptions, practice, and service development needs – findings from a national survey
Objectives: new routes for supply of eye tissue are needed in the UK to support transplant surgery and medical research. Hospice care (HC) and Hospital-based Palliative care (HPC) services represent potential supply routes. This paper reports findings from the survey arm of the Eye Donation from Palliative and Hospice Care–Investigating potential, practice preference and perceptions study (EDiPPPP), objectives of which were to: i) Investigate existing practice in relation to eye donation across HC and HPC settings; ii) identify perceptions of HCPs toward embedding eye donation into routine end of life care planning; iii) investigate the informational, training, or support needs of clinicians regarding eye donation.

Design: online survey of UK-based HC and HPC clinicians, distributed through professional organisations (Association of Palliative Medicine (UK); Hospice UK).

Participants: one hundred fifty-six participants completed (63% HC; 37% HPC—8% response rate, of n = 1894 approached).

Results: majority of participants (63%, n = 99) supported raising eye donation (ED) with patients and families and agreed that ED should be discussed routinely with eligible patients. However, 72%, (n = 95) indicated that staff within their clinical setting did not routinely discuss the option of ED in end-of-life care planning conversations with the majority of participants reporting that the option of ED was not ‘routinely discussed in multi-disciplinary team or other meetings.

Conclusions: despite significant support, ED is not part of routine practice. Attention to barriers to embedding ED and reducing knowledge deficits are urgently needed to increase the supply of eye tissue for use in transplant operations.
Advanced care planning, Behaviour change, Corneal donation, End of life care, Eye donation, Health services research, Hospice care, Palliative care, Tissue donation
1472-684X
Long-Sutehall, Tracy
92a6d1ba-9ec9-43f2-891e-5bfdb5026532
Zatorska, Anna
774151f0-591f-410a-9a39-5703340c7dbd
Myall, Michelle
0604ba0f-75c2-4783-9afe-aa54bf81513f
Faull, Christina
ffabe0fa-36d5-47d8-916a-202f5db19e25
Hurlow, Adam
2fb24d61-3cb3-405a-a4f1-c07041d6b902
Mollart, Sarah
980d1f00-2786-482c-a3e1-6aa59e501ba9
Rayment, Clare
f71ba345-bc25-4aa4-b7e9-b0a51ef366d5
Short, Jill
acb13bc0-8f2d-423e-9e9d-be8027de2ec3
Wale, Jane
6c0e67fa-ec2a-47df-b0f2-ba23b2bd2951
Winstanley, Emma
4e56a967-3d54-4255-b5f8-5bc754ea1ca4
Bracher, Mike
695d6abd-8da8-4e03-9b81-fbfa199da1ab
Long-Sutehall, Tracy
92a6d1ba-9ec9-43f2-891e-5bfdb5026532
Zatorska, Anna
774151f0-591f-410a-9a39-5703340c7dbd
Myall, Michelle
0604ba0f-75c2-4783-9afe-aa54bf81513f
Faull, Christina
ffabe0fa-36d5-47d8-916a-202f5db19e25
Hurlow, Adam
2fb24d61-3cb3-405a-a4f1-c07041d6b902
Mollart, Sarah
980d1f00-2786-482c-a3e1-6aa59e501ba9
Rayment, Clare
f71ba345-bc25-4aa4-b7e9-b0a51ef366d5
Short, Jill
acb13bc0-8f2d-423e-9e9d-be8027de2ec3
Wale, Jane
6c0e67fa-ec2a-47df-b0f2-ba23b2bd2951
Winstanley, Emma
4e56a967-3d54-4255-b5f8-5bc754ea1ca4
Bracher, Mike
695d6abd-8da8-4e03-9b81-fbfa199da1ab

Long-Sutehall, Tracy, Zatorska, Anna, Myall, Michelle, Faull, Christina, Hurlow, Adam, Mollart, Sarah, Rayment, Clare, Short, Jill, Wale, Jane, Winstanley, Emma and Bracher, Mike (2023) Eye donation in hospice and hospital palliative care settings: perceptions, practice, and service development needs – findings from a national survey. BMC Palliative Care, 22 (1), [173]. (doi:10.1186/s12904-023-01300-7).

Record type: Article

Abstract

Objectives: new routes for supply of eye tissue are needed in the UK to support transplant surgery and medical research. Hospice care (HC) and Hospital-based Palliative care (HPC) services represent potential supply routes. This paper reports findings from the survey arm of the Eye Donation from Palliative and Hospice Care–Investigating potential, practice preference and perceptions study (EDiPPPP), objectives of which were to: i) Investigate existing practice in relation to eye donation across HC and HPC settings; ii) identify perceptions of HCPs toward embedding eye donation into routine end of life care planning; iii) investigate the informational, training, or support needs of clinicians regarding eye donation.

Design: online survey of UK-based HC and HPC clinicians, distributed through professional organisations (Association of Palliative Medicine (UK); Hospice UK).

Participants: one hundred fifty-six participants completed (63% HC; 37% HPC—8% response rate, of n = 1894 approached).

Results: majority of participants (63%, n = 99) supported raising eye donation (ED) with patients and families and agreed that ED should be discussed routinely with eligible patients. However, 72%, (n = 95) indicated that staff within their clinical setting did not routinely discuss the option of ED in end-of-life care planning conversations with the majority of participants reporting that the option of ED was not ‘routinely discussed in multi-disciplinary team or other meetings.

Conclusions: despite significant support, ED is not part of routine practice. Attention to barriers to embedding ED and reducing knowledge deficits are urgently needed to increase the supply of eye tissue for use in transplant operations.

Text
EDiPPPP_SurveyPaper_ BMC post review and corretions added 20231004 - Accepted Manuscript
Available under License Creative Commons Attribution.
Download (187kB)
Text
s12904-023-01300-7 (2) - Version of Record
Available under License Creative Commons Attribution.
Download (3MB)
Text
EDiPPPP_SurveyPaper1_SupplementaryFile1
Available under License Creative Commons Attribution.
Download (360kB)

More information

Accepted/In Press date: 28 October 2023
e-pub ahead of print date: 8 November 2023
Published date: 8 November 2023
Additional Information: Funding Information: The project from which this paper was generated was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme, Award ID = HSDR 17/49/42. Publisher Copyright: © 2023, The Author(s).
Keywords: Advanced care planning, Behaviour change, Corneal donation, End of life care, Eye donation, Health services research, Hospice care, Palliative care, Tissue donation

Identifiers

Local EPrints ID: 484154
URI: http://eprints.soton.ac.uk/id/eprint/484154
ISSN: 1472-684X
PURE UUID: 2303313c-9de8-4048-8bea-3eacb682bf76
ORCID for Tracy Long-Sutehall: ORCID iD orcid.org/0000-0002-6661-9215
ORCID for Michelle Myall: ORCID iD orcid.org/0000-0001-8733-7412

Catalogue record

Date deposited: 10 Nov 2023 18:08
Last modified: 06 Jun 2024 01:40

Export record

Altmetrics

Contributors

Author: Anna Zatorska
Author: Michelle Myall ORCID iD
Author: Christina Faull
Author: Adam Hurlow
Author: Sarah Mollart
Author: Clare Rayment
Author: Jill Short
Author: Jane Wale
Author: Emma Winstanley
Author: Mike Bracher

Download statistics

Downloads from ePrints over the past year. Other digital versions may also be available to download e.g. from the publisher's website.

View more statistics

Atom RSS 1.0 RSS 2.0

Contact ePrints Soton: eprints@soton.ac.uk

ePrints Soton supports OAI 2.0 with a base URL of http://eprints.soton.ac.uk/cgi/oai2

This repository has been built using EPrints software, developed at the University of Southampton, but available to everyone to use.

We use cookies to ensure that we give you the best experience on our website. If you continue without changing your settings, we will assume that you are happy to receive cookies on the University of Southampton website.

×