Responding to the public’s voice: changing cornea donation practice in a hospice

Tredgett, Kate; Ward-Davies, Lauren

doi:10.1136/bmjspcare-2017-001373

Cited by 2 publications

(11 citation statements)

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“…This reluctance was attributed to several factors including a lack of knowledge about donation, fear of providing misinformation, concern about adding responsibilities to the admission or postmortem processes, and/or staff concern about potentially causing patient/family anxiety. This was consistent with the literature 2-4 . Most staff were not familiar with donation; therefore, education was a key strategy to build relationships, dispel myths, and help staff to understand the benefits of donation.…”

Section: Best Practices For Community Hospice/palliative Care Organiz...supporting

confidence: 82%

“…This was consistent with the literature. [2][3][4] Most staff were not familiar with donation; therefore, education was a key strategy to build relationships, dispel myths, and help staff to understand the benefits of donation. Orientation and continuing education were found to increase staff knowledge, confidence, and comfort level.…”

Section: Best Practices For Community Hospice/palliative Care Organiz...mentioning

confidence: 99%

“…They did prefer that donation discussions occur when they were “well” and not when they were close to death 3 . Tredgett and Ward-Davies 4 described a study using a care planning document and an information booklet to facilitate patient/family discussions about corneal donation with hospice personnel during care planning conferences. Clinicians could elect not to use these materials if they believed it would be too distressing to the patients.…”

Section: Review Of Literaturementioning

confidence: 99%

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Turning Loss Into Legacy

Westphal,

Williams,

Sommer

2024

J Hosp Palliat Nurs

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Organ, tissue, and eye donations provide opportunities to leave a legacy by saving and/or enhancing the quality of life of others. There has been little published related to tissue or eye donation in hospice/palliative care and few initiatives to facilitate donation among hospice patients/families. Donation myths, gaps in knowledge, and, most significantly, lack of donation referral processes result in missed opportunities for patient/families to consider donation. One donor has the potential to impact 75 lives or more through tissue donation and 2 lives through eye donation. Hospice/palliative care providers can play key roles related to education, advocacy, and collaboration. The support of hospice/palliative care organizations and the local Organ Procurement Organization/Tissue and Eye Recovery Agency are essential for facilitating donation opportunities. This article summarizes current literature, examines legislation and regulations related to donation, presents a case that illustrates an opportunity for hospice community based donation, and shares practices that support donation in hospice/palliative care organizations together with the local Organ Procurement Organization/Tissue and Eye Recovery Agency. This article will hopefully provide the impetus for further study and the development of practices to optimize donation in hospice/palliative care, thus providing more patients and families the opportunity to turn loss into legacy.

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Section: Best Practices For Community Hospice/palliative Care Organiz...supporting

confidence: 82%

Section: Best Practices For Community Hospice/palliative Care Organiz...mentioning

confidence: 99%

Section: Review Of Literaturementioning

confidence: 99%

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Turning Loss Into Legacy

Westphal,

Williams,

Sommer

2024

J Hosp Palliat Nurs

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“…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.…”

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

confidence: 99%

“…74 Family members' decision to decline ED was based on the prior stated wishes of the patient not to donate or the family's uncertainty about the patient's wishes. 68,74 However, retrieved publications indicate that HC and HPC patients are generally unaware about ED and eligibility criteria. For example, in two studies, patients thought they could transmit their cancer to recipients via donated corneal tissue, 73,75 or that their eyes would not be good enough for use in transplantation.…”

Section: Palliative Care Service Users' Perceptions Of Eye Donationmentioning

confidence: 99%

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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Responding to the public’s voice: changing cornea donation practice in a hospice

Cited by 2 publications

References 1 publication

Turning Loss Into Legacy

Turning Loss Into Legacy

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

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