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Customising Health Literacy Campaigns for Organ Donation and Transplantation: Understanding the Issue From the Public, Patients, and Future Doctors

Customising Health Literacy Campaigns for Organ Donation and Transplantation: Understanding the Issue From the Public, Patients, and Future Doctors

Maria Theodosopoulou (Imperial College London, UK), Zoe-Athena Papalois (King's College London, UK), Lisa Aufegger (Imperial College London, UK), Giorgos Baskozos (University of Oxford, UK), Frank J. M. F. Dor (Imperial College Healthcare NHS Trust, UK), Daniel Casanova (University of Cantabria, Spain), and Vassilios Papalois (Imperial College Healthcare NHS Trust, UK)
Copyright: © 2022 |Pages: 12
DOI: 10.4018/978-1-7998-8824-6.ch007
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Abstract

The organ shortage and the increasing demand for organs are universal, worldwide challenges. Health literacy is a powerful tool that can help to increase awareness about organ donation and transplantation on a large scale and to encourage and sustain support for organ donation. The unique perspectives, experiences, and expectations of medical students, renal patients, and hospital administrative staff across the UK, Netherlands, and Spain on the topic of health literacy (HL) campaigns regarding deceased organ donation (DOD) were recorded in a cross-cultural, qualitative study. Focus group discussions enabled participants to express their views on existing HL campaigns and to propose novel pathways for future campaigns.
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Background

Family Refusal

Family refusal is one of the main reasons for missed transplants. Although people may wish to become organ donors after their death, their wish may not be respected if their families who are called to consent for donation to take place are unaware of the deceased’s wishes. According to NHSBT data regarding the family consent figures in the UK, in 2018-2019 67% families agreed to give consent for organ donation. The majority of the families that refused to consent were not aware of the deceased person’s wishes, while some others decided to overturn the deceased’s decision as it may have conflicted with their own personal views and beliefs. As a result, the opportunity to transplant thousands of organs was missed. Several factors impact the quality of the family approach, including the timing of the donation request as well as the skills of the appointed person requesting the donation may be factors influencing family’s consent (Hulme et al, 2016).

In some cases, the deceased patient’s decision may not be respected by the family and not give consent on the organ donation. Family overrule may be based on various reasons (Shaw et al, 2020), but ethical issues arise when family values are placed higher than patient’s wishes. Communication of wishes and decisions with family members plays an important role in taking the burden from the family during a sensitive time.

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