Improving corneal donation rates: a three-phase analysis of professional and patient factors

Ng, Isabel H X; Astle, Josie; Tregenna, Emma; Eades, Helen; Mollart, Sarah

doi:10.7861/futurehosp.6-1-s38

Cited by 2 publications

(19 citation statements)

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“…Healthcare providers are reported to be generally favourable towards ED, perceiving it as worthwhile. 34,47,65 Authors report that although participants felt uncomfortable discussing ED, the majority felt it was their professional responsibility to do so. 64 Authors exploring the attitudes, knowledge, practice and experiences of corneal donation across a sample of 410 HCPs respondents reported that 70% (291/410) perceived corneal donation as a rewarding opportunity for patients and/or their families, with 82% (345/410) indicating that corneal donation was compatible with their personal beliefs.…”

Section: Perceptions Of Service Providers In Palliative and Hospice C...mentioning

confidence: 99%

Section: Practice Of Service Providers In Hc and Hpc In Raising The O...mentioning

confidence: 99%

“…While HCPs often acknowledge that ED is worthwhile, evidence indicates that discussing ED is not common practice, 58,65,67,68 with two surveys, including HCPs, reporting that 92% (92/100) and 93% (399/431) never or rarely raise the subject of corneal donation with patients or relatives. 34,65 Research surveying HCPs within a large UK HC setting reported that 90% of 434 staff hardly ever, or never, initiated discussions regarding corneal donation with their patients or families. 34 Other authors surveying 76 hospice staff, reported that while 49/76 (65.3%) of the staff would discuss donation if the topic was raised by relatives, 'only one respondent reported routinely discussing the issue' (p. 100) with family members.…”

Section: Practice Of Service Providers In Hc and Hpc In Raising The O...mentioning

confidence: 99%

“…These findings are supported by work from co-applicants to the EDiPPPP study, reporting that patients within HC settings were in favour of having discussions about ED, 36,73 and that some patients changed their minds regarding ED (from negative to positive) after a conversation. 65,73 Patients are reported to be willing to participate in discussions about the option of ED, but were unaware of the option of ED or assumed that they were ineligible. 65 Furthermore, participating patients were motivated to be eye donors and felt positive about the possibility of helping others.…”

Section: Palliative Care Service Users' Perceptions Of Eye Donationmentioning

confidence: 99%

“…65,73 Patients are reported to be willing to participate in discussions about the option of ED, but were unaware of the option of ED or assumed that they were ineligible. 65 Furthermore, participating patients were motivated to be eye donors and felt positive about the possibility of helping others. 65,73 A survey of inpatients 65 found that the majority of participants, that is 73% (8/11), reported that they did not find it upsetting to discuss ED and that asking about donation enabled them to make an informed decision about donation.…”

Section: Palliative Care Service Users' Perceptions Of Eye Donationmentioning

confidence: 99%

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Eye donation from palliative and hospice care contexts: the EDiPPPP mixed-methods study

Long-Sutehall,

Bracher,

Mollart

et al. 2023

Health Soc Care Deliv Res

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Background Over 2 million people in the United Kingdom are living with sight loss with costs to the United Kingdom economy reported as £4.34 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. Objectives 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’ 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. Design A 36-month mixed-methods, multicentre study undertaking three work packages. Settings 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). Participants Work package 1 – 105 service providers. Work package 2 – 62 service users, and 156 service providers in the national survey. Work package 3 – 21 expert consultees (patient and public involvement, cross discipline). Data sources Scoping review, retrospective note review, qualitative interviews/focus groups, participant observation, secondary analysis of primary data, national survey, transparent expert consultation. Results Potential: The retrospective notes review demonstrated that of 1199 deceased patients’ notes, 553 (46%) patients met the criteria for eye donation (56%, n = 337 in hospice care service settings and 36%, n = 216 in hospital palliative care service). Practice: 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. Perceptions: 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. Preferences: 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 STEPS – Support Toolkit for Eye donation in Palliative care Settings will follow implementation of the full intervention (expected to begin in October 2022). Limitations 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%). Conclusions 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. Future work Evaluation of the STEPS – Support Toolkit for Eye donation in Palliative care Settings; 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). Trial registration This trial is registered as ISRCTN14243635: Eye donation from palliative care and hospice care settings. Funding details 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 Health and Social Care Delivery Research; Vol. 11, No. 20. See the NIHR Journals Library website for further project information.

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Section: Perceptions Of Service Providers In Palliative and Hospice C...mentioning

confidence: 99%

Section: Practice Of Service Providers In Hc and Hpc In Raising The O...mentioning

confidence: 99%

Section: Practice Of Service Providers In Hc and Hpc In Raising The O...mentioning

confidence: 99%

Section: Palliative Care Service Users' Perceptions Of Eye Donationmentioning

confidence: 99%

Section: Palliative Care Service Users' Perceptions Of Eye Donationmentioning

confidence: 99%

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Eye donation from palliative and hospice care contexts: the EDiPPPP mixed-methods study

Long-Sutehall,

Bracher,

Mollart

et al. 2023

Health Soc Care Deliv Res

Self Cite

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Barriers and Facilitators to Eye Donation in Hospice and Palliative Care Settings: A Scoping Review

Madi-Segwagwe

Bracher

Myall

et al. 2021

Palliative Medicine Reports

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Background: The need for eye tissue for use in sight saving and sight restoring surgery is a global issue. Approximately 53% of the world's population has no access to interventions such as corneal transplantation. Low levels of eye tissue impact on service providers such as National Health Service Blood and Transplant who aim to achieve a weekly stock of 350 eyes but do not meet this target. Aim: Patients who die in hospice and palliative care settings could be potential donors; therefore the aim of this systematic scoping review was to identify the potential for eye donation and barriers toward it from these clinical contexts. Design: A scoping review following the Joanna Briggs scoping review methodology was applied to search the global literature. Results: 13 articles from the global literature were retrieved. Evidence indicate that 542 patients could potentially have donated their eyes. Key barriers to increasing eye donation include the reluctance of healthcare professionals to raise the option of eye donation and the evidenced lack of awareness of patients and family members about donation options and eligibility. This review also indicates a lack of clinical guidance drawn from highquality evidence proposing interventions that could inform clinical practice and service development. Conclusion:The scoping review presented here provides an up-to-date view of the current potential for, perceptions toward, and practice underpinning offering the option of eye donation to dying patients and their family members in hospice and palliative care context.

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Improving corneal donation rates: a three-phase analysis of professional and patient factors

Cited by 2 publications

References 0 publications

Eye donation from palliative and hospice care contexts: the EDiPPPP mixed-methods study

Eye donation from palliative and hospice care contexts: the EDiPPPP mixed-methods study

Barriers and Facilitators to Eye Donation in Hospice and Palliative Care Settings: A Scoping Review

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