{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,5]],"date-time":"2026-06-05T10:24:58Z","timestamp":1780655098034,"version":"3.54.1"},"reference-count":92,"publisher":"National Institute for Health and Care Research","license":[{"start":{"date-parts":[[2023,11,1]],"date-time":"2023-11-01T00:00:00Z","timestamp":1698796800000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100002001","name":"Health and Social Care Delivery Research (HSDR) Programme","doi-asserted-by":"publisher","award":["HSDR 17\/49\/42"],"award-info":[{"award-number":["HSDR 17\/49\/42"]}],"id":[{"id":"10.13039\/501100002001","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journalslibrary.nihr.ac.uk"],"crossmark-restriction":false},"short-container-title":["Health Soc Care Deliv Res"],"abstract":"<jats:sec id=\"abs1-1\"><jats:title>Background<\/jats:title>\n<jats:p>Over 2 million people in the United Kingdom are living with sight loss with costs to the United Kingdom economy reported as \u00a34.34 billion annually. Conditions that lead to sight loss and impaired vision can be treated if eye tissue is available for corneal transplantation, reconstructive surgery and research into eye diseases. Supply of eye tissue (only available via eye donation) is currently insufficient to meet demand; therefore, new routes are needed. Hospice and hospital-based Palliative Care Services have been reported as potential donation sources of this tissue.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-2\"><jats:title>Objectives<\/jats:title>\n<jats:p>To: (1) scope the size and clinical characteristics of the potential eye donation population from research sites; (2) map the donation climate of each research site; (3) identify factors that enable or challenge service providers to consider the option of eye donation from a local and national perspective; (4) identify service users\u2019 views regarding the option of eye donation and the propriety of discussing eye donation; and (5) develop and pilot an empirically based intervention designed to change behaviours in relation to eye donation.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-3\"><jats:title>Design<\/jats:title>\n<jats:p>A 36-month mixed-methods, multicentre study undertaking three work packages.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-4\"><jats:title>Settings<\/jats:title>\n<jats:p>Three hospice care and three hospital-based palliative care services situated in the North, Midlands and the South of England (one service of each type per region).<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-5\"><jats:title>Participants<\/jats:title>\n<jats:p>Work package 1 \u2013 105 service providers. Work package 2 \u2013 62 service users, and 156 service providers in the national survey. Work package 3 \u2013 21 expert consultees (patient and public involvement, cross discipline).<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-6\"><jats:title>Data sources<\/jats:title>\n<jats:p>Scoping review, retrospective note review, qualitative interviews\/focus groups, participant observation, secondary analysis of primary data, national survey, transparent expert consultation.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-7\"><jats:title>Results<\/jats:title>\n<jats:p><jats:bold><jats:italic>Potential<\/jats:italic><\/jats:bold>: The retrospective notes review demonstrated that of 1199 deceased patients\u2019 notes, 553 (46%) patients met the criteria for eye donation (56%, <jats:italic>n<\/jats:italic> = 337 in hospice care service settings and 36%, <jats:italic>n<\/jats:italic> = 216 in hospital palliative care service). <jats:bold><jats:italic>Practice<\/jats:italic>:<\/jats:bold> Less than 4% of all cases agreed as eligible for donation had been approached or referred for eye donation. Eye donation is not currently an embedded practice at local and national levels. <jats:bold><jats:italic>Perceptions<\/jats:italic>:<\/jats:bold> Service providers were motivated to discuss eye donation but lacked opportunity and capability. Service users were willing and able to hold conversations about eye donation but were not aware of the option and had not had the option discussed with them. <jats:bold><jats:italic>Preferences:<\/jats:italic><\/jats:bold> Service users wanted to be offered the option of eye donation, and service providers wanted bespoke education and training related to eye donation. Evaluation of the developed intervention <jats:italic>STEPS \u2013 Support Toolkit for Eye donation in Palliative care Settings<\/jats:italic> will follow implementation of the full intervention (expected to begin in October 2022).<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-8\"><jats:title>Limitations<\/jats:title>\n<jats:p>Due to the significant impact of the COVID-19 pandemic on clinical sites, partner organisations and national service providers, only two elements of the developed intervention have been pilot tested for proof of concept and the response rate to the national survey was low (8%).<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-9\"><jats:title>Conclusions<\/jats:title>\n<jats:p>Significant potential exists for eye donation from hospice care and hospital palliative care services; however, individual and organisational behaviour as well as information system-based changes are needed to maximise this potential.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-10\"><jats:title>Future work<\/jats:title>\n<jats:p>Evaluation of the <jats:italic>STEPS \u2013 Support Toolkit for Eye donation in Palliative care Settings;<\/jats:italic> Research exploring the wider public knowledge and views regarding eye donation; research exploring the use of language by National Health Service Blood and Transplant-Tissue and Eye Services in their public-facing infographics, communications and campaigns (specifically the use of the term eye donation).<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-11\"><jats:title>Trial registration<\/jats:title>\n<jats:p>This trial is registered as ISRCTN14243635: Eye donation from palliative care and hospice care settings.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-12\"><jats:title>Funding details<\/jats:title>\n<jats:p>This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (17\/49\/42) and will be published in full in <jats:italic>Health and Social Care Delivery Research<\/jats:italic>; Vol. 11, No. 20. See the NIHR Journals Library website for further project information.<\/jats:p>\n<\/jats:sec>","DOI":"10.3310\/kjwa6741","type":"journal-article","created":{"date-parts":[[2023,11,6]],"date-time":"2023-11-06T12:06:42Z","timestamp":1699272402000},"page":"1-159","update-policy":"https:\/\/doi.org\/10.3310\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":2,"title":["Eye donation from palliative and hospice care contexts: the EDiPPPP mixed-methods study"],"prefix":"10.3310","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6661-9215","authenticated-orcid":true,"given":"Tracy","family":"Long-Sutehall","sequence":"first","affiliation":[{"name":"School of Health Sciences, University of Southampton, Southampton, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5861-2657","authenticated-orcid":true,"given":"Mike","family":"Bracher","sequence":"additional","affiliation":[{"name":"School of Health Sciences, University of Southampton, Southampton, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0250-3456","authenticated-orcid":true,"given":"Sarah","family":"Mollart","sequence":"additional","affiliation":[{"name":"West Suffolk Hospital NHS Foundation Trust, Suffolk, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4747-4751","authenticated-orcid":true,"given":"Jane","family":"Wale","sequence":"additional","affiliation":[{"name":"Milton Keynes University Hospital NHS Foundation Trust, Eaglestone, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"6221","published-online":{"date-parts":[[2023,11]]},"reference":[{"key":"key2023110617261600_ref1-bib1","doi-asserted-by":"crossref","first-page":"614","DOI":"10.1136\/bjophthalmol-2011-300539","article-title":"Global estimates of visual impairment: 2010","volume":"96","author":"Pascolini","year":"2012","journal-title":"Br J Ophthalmol"},{"key":"key2023110617261600_ref2-bib2","volume-title":"Eye Health Research","author":"College of Optometrists","year":"2019"},{"key":"key2023110617261600_ref3-bib3","doi-asserted-by":"crossref","first-page":"167","DOI":"10.1001\/jamaophthalmol.2015.4776","article-title":"Global survey of corneal transplantation and eye banking","volume":"134","author":"Gain","year":"2016","journal-title":"JAMA Ophthalmol"},{"key":"key2023110617261600_ref4-bib4","doi-asserted-by":"crossref","first-page":"e045250","DOI":"10.1136\/bmjopen-2020-045250","article-title":"Family refusal of eye tissue donation from potential solid organ donors: a retrospective analysis of summary and free-text data from the UK National Health Service Blood and Transplant Services (NHS-BT) National Referral Centre (1 April 2014 to 31 March 2)","volume":"11","author":"Bracher","year":"2021","journal-title":"BMJ Open"},{"key":"key2023110617261600_ref5-bib5","doi-asserted-by":"crossref","first-page":"1188","DOI":"10.1097\/TP.0b013e318235c817","article-title":"Anything but the eyes: culture, identity, and the selective refusal of corneal donation","volume":"92","author":"Lawlor","year":"2011","journal-title":"Transplantation"},{"key":"key2023110617261600_ref6-bib6","doi-asserted-by":"crossref","first-page":"57","DOI":"10.1007\/s11673-013-9497-9","article-title":"Understanding selective refusal of eye donation: identity, beauty, and interpersonal relationships","volume":"11","author":"Lawlor","year":"2014","journal-title":"J Bioeth Inq"},{"key":"key2023110617261600_ref7-bib7","doi-asserted-by":"crossref","first-page":"236","DOI":"10.1037\/a0022379","article-title":"The \u2018ick\u2019 factor, anticipated regret, and willingness to become an organ donor","volume":"30","author":"O\u2019Carroll","year":"2011","journal-title":"Health Psychol"},{"key":"key2023110617261600_ref8-bib8","unstructured":"Department of Health. 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