"My Dead Body": Development, production, and reception of a documentary that publicly displays the dissection of a human donor.

Recently, there has been an emphasis on keeping the study of anatomy using donor material confined to the domain of medical and allied healthcare professionals. Given the abundance of both accurate and inaccurate information online, coupled with a heightened focus on health following the COVID-19 pandemic, one may question whether it is time to review who can access learning anatomy using donors. In 2019, Brighton and Sussex Medical School (BSMS) obtained a Human Tissue Authority Public Display license with the aim of broadening the reach of who could be taught using donor material. In 2020, BSMS received its first full-body donor with consent for public display. Twelve workshops were delivered to student groups who do not normally have the opportunity to learn in the anatomy laboratory. Survey responses (10.9% response rate) highlighted that despite being anxious about seeing inside a deceased body, 95% felt more informed about the body. A documentary "My Dead Body" was filmed, focusing on the rare cancer of the donor Toni Crews. Viewing figures of 1.5 million, and a considerable number of social media comments highlighted the public's interest in the documentary. Thematic analysis of digital and social media content highlighted admiration and gratitude for Toni, the value of education, and that while the documentary was uncomfortable to watch, it had value in reminding viewers of life, their bodies, and their purpose. Fully consented public display can create opportunities to promote health-conscious life choices and improve understanding of the human body.

Perception of Polish patients with cancer of the ethical and legal issues related to biobank research.

BACKGROUND: Although biobanks have become fundamental to many research centers and contribute to medical development, they generate many ethical and legal issues that may discourage patients from donating. MATERIALS AND METHODS: To understand patients' perception of ethical and legal issues related to biobanks we conducted a survey among 548 Polish patients with cancer. RESULTS: While 93.1% of patients with cancer declared themselves willing to donate biospecimens left over after a medical procedure to a biobank, most opted for one-time consent or study-specific consent, blanket consent being less frequently preferred. Many patients believed that future use of previously collected tissues require second contact. Most patients preferred pseudonymization over anonymization of the data, and supported donors' right to withdraw informed consent at any given moment. Finally, while personal health information was the most expected form of compensation for donation, most patients suggested that all parties, including the biobank concerned, the sponsors of the research, and the donors, should own the rights to cancer tissues donated and profit from the biobank research. Patients' opinions on the ethical and legal issues related to biobank research were associated with age, sex, religiosity, education level, and place of residence. CONCLUSIONS: Since biobanks generate ethical and legal issues related to informed consent, data protection and storage, as well as the sharing of biosamples, tissue ownership, and profit sharing, that may discourage patients from donation, when asking a patient for a donation, healthcare professionals should communicate in a donor-centered manner and address patients' ethical and moral concerns related to donation and offer resources to help manage these concerns.

Understanding the value of brain donation for research to donors, next-of-kin and clinicians: A systematic review.

PURPOSE: Post-mortem brain donation affords the opportunity to characterise disease by exploring global neuropathological changes. Such opportunities are essential to progress knowledge of CNS tumours such as Glioblastoma. A comprehensive understanding of the experience of consenting to brain donation is crucial to maximising consent rates while providing patient-centred care. This review aimed to synthesise the reported facilitators and barriers according to potential donors, next-of-kin (NOK) and clinician respondents. DESIGN: Database searches included Embase, Medline, PsycINFO, Psychology and Behavioural Science and Scopus. Search terms focused on motivations, attitudes and psychosocial experiences of brain donation. Exclusions included organ transplantation and brain death. All studies were assessed for quality and validity using tools from the Joanna Briggs Institute. To determine perceptions of benefit and harm, a method guided by the thematic analysis of Braun and Clarke was employed to reflexively assess and identify common themes and experiences. RESULTS: 40 studies (15 qualitative, 25 quantitative) were included involving participants with paediatric cancer, neurodegenerative and psychological diseases. Perceptions of benefit included benefit to future generations, aiding scientific research, avoidance of waste, improved treatments and the belief that donation will bring consolation or aid in the grieving process. Perceptions of harm included a perceived conflict with religious beliefs, disfigurement to the donor, emotional distress at the time of autopsy and discord or objections within the family. CONCLUSION: Brain donation can afford a sense of purpose, meaning and empowerment for donors and their loved ones. Careful strategies are required to mitigate or reduce potential harms during the consent process.

Growth in the face of overwhelming pressure: A narrative review of sibling donor experiences in pediatric hematopoietic stem cell transplant.

Sibling donation in pediatric hematopoietic stem cell transplant (HSCT) can be emotionally distressing for children, but may simultaneously evoke positive emotions, and has the potential to facilitate personal growth. We conducted a narrative review of sibling donor experiences, which included an analysis of psychosocial distress and post-traumatic growth (PTG). We searched the following databases: MEDLINE, CINAHL, PsycInfo, and SCOPUS. Search concepts used to develop key terms included HSCT, siblings, children, and psychosocial outcomes. Specific inclusion criteria included a) research articles published in English in peer-reviewed journals until September 2020, and b) reported trauma symptoms and PTG characteristics of sibling donation experiences. Four themes were identified: fear and anxiety related to HLA testing, overwhelming pressure to donate, guilt and blame when the ill child died, as well as emotional and physical isolation following donation. Sibling responses also included evidence of PTG, articulated as a deepened appreciation for life, closer relationships with the ill child and other family members, increased personal strength, and spiritual growth. These results highlight a critical need for future research approaches that further empower sibling donor voices, such as those found in participatory, arts-based methodologies.

Willingness and Attitude of the Arab World Population Toward Solid-Organ Donation.

OBJECTIVES: Awareness regarding organ donation has been steadily growing in the Arab world yet is still far from the current demand. A thorough analysis of population behavior toward organ donation can improve organ transplant education. Therefore, we designed this study to assess the knowledge, attitude, donation desires, and views on organ donation among adults in Arab countries. MATERIALS AND METHODS: An observational cross- sectional study approach was used by assessing 1004 adult survey respondents from 22 Arab countries through the snowball sampling technique via social media platforms and emails. A fact sheet was used to collect demographic information, which was followed by a predesigned questionnaire to assess the attitude and willingness of participants toward solid-organ donation. RESULTS: Results showed that only 17.0% of respondents had willingness to donate in the future, and only 2.0% respondents were already organ donors or registered as organ donors. Respondents indicated that the most acceptable organs to be donated after death were kidneys (57.8%), followed by liver (45.1%) and heart (42.3%). Regarding the type of surgery for living donation, 48.1% of the respondents had no surgery type preference, whereas 12.9% would only agree to laparoscopic intervention. A significant difference (P < .001) was noted among respondents with transplant experience and without experience regarding organ donation willingness. In terms of paired exchange and list exchange donation, 18.0% indicated that they would refuse to donate, 23.0% would accept, and 19.0% would accept if no alternative was available. CONCLUSIONS: This study highlighted the psychology of the Arab world and factors influencing decisions toward solid-organ donation and transplant. The biggest factor for unwillingness to donate organs was posttransplant health-related risks; almost 50% of respondents were afraid of health complications. A need for awareness and education regarding the importance of organ donation and transplant emerged as common themes in this study.

Ethical issues facing hematopoietic stem cell transplantation in India.

A successful Hematopoietic stem cell transplantation (HSCT) is often the only hope of survival for children suffering from a range of potentially life-threatening hematological malignancies. The financial, ethical, and emotional problems faced by the matched sibling donor and their recipient siblings during the HSCT are extremely complex and challenging. Herein, the authors have attempted to pen down these in the configuration of a poem.

Central importance of emotional and quality-of-life outcomes in the public's perception of face transplantation.

BACKGROUND: Face transplantation is a surgical innovation to manage people with severely interrupted facial function and form. How the public perceive face transplantation and its potential implications for the recipient, donor, and society is unclear. The aim of this study was to understand the public perception of face transplantation, including when it is appropriate, what information is required to feel adequately informed, and which factors influence a person's willingness to donate their face. METHODS: This was a nationwide survey of participants representative of the GB public. A quantitative analysis was performed. Free-text qualitative responses were coded with thematic content analysis and a narrative analysis was constructed. RESULTS: The survey included 2122 participants. Face transplantation was considered worth the potential risks if it improved an individual's quality of life, gave them a 'normal life', and/or increased their confidence and social interaction. Respondents were worried about the impact face transplantation might have on donor families, especially recipient families adapting to the identity of the donor. Respondents most concerned about the concept of face transplantation were aged at least 55 years (χ2(4) = 38.9, P < 0.001), women (χ2(1) = 19.8, P < 0.001) , and Indian/Asian (χ2(4) = 11.9, P = 0.016). CONCLUSION: The public perceive emotional and psychological outcomes as equally as important as, or more important than, surgical outcomes when determining the appropriateness of face transplantation. Future research should focus on measuring and describing emotional and psychological outcomes after face transplantation.

How Do We Manage Hematopoietic Cell Transplant during the SARS-CoV-2 Pandemic?

Patients receiving a hematopoietic cell transplant are thought to be at increased risk of infection with severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2) and coronavirus infectious disease 2019. Transplant activities at our center continue, and notably, no patient has been infected with SARS-CoV-2. Indeed, social distancing, masking, and education for patients and donors are major pillars of prevention. We recommend potential transplant recipients and donors to be tested for SARS-CoV-2 with qRT-PCR, serum antibody detection, and a lung CT scan pretransplant. If possible, stem cells from HLA-matched unrelated donors by local processing laboratories should be cryopreserved and shipped before initiating pretransplant conditioning. An alternative HLA-haplotype-matched related donor should be identified and evaluated as a backup. The interval immediately after discharge is the time of greatest risk for SARS-CoV-2 infection because of travel and exposure to infected persons. We recommend self-isolation and minimal contact with family members. Nonessential clinic visits should be deferred or substituted with telemedicine consultations if possible. These recommendations are based on our experience at a major transplant center in China. Although some recommendations are evidence based, other recommendations are not and warrant validation in controlled trials.

Regional Differences Among Bone Marrow Registrants: The Results of a Cross-Sectional Telephone-Based Survey.

INTRODUCTION: In the most western and northeastern provincial branches of China where ethnic minorities reside the registry sizes are compatibly small. Our goal was to address the following questions: 1. Do registrants in the 4 regions differ across 4 categories of characteristics associated with decisions to proceed with bone marrow donation? 2. What are the differences in their motivation to attend the CMDP (China Marrow Donor Program)? 3. What possible suggestions could this study supply for the recruitment work of these 4 regions in the future? MATERIAL AND METHOD: A random sampling procedure was conducted to include 2% of 229,204 newly registered potential bone marrow donors. Participants were contacted to complete a 30-minute structured telephone review. RESULT: There is a statistically significant effect of region on the causes of donor attrition. For both the opted-out group and ambivalent group of western region registrants, the knowledge (were not fully informed when enrolled) reason was significantly higher than in the other 3 regions. None of the northeast registrants chose "health" as a reason for their ambivalence, in contrast, east registrants had a significantly higher proportion to worry about their health status was not suitable for donation. DISCUSSION: The results illustrate that in China at least, the mode of registration differs according to the region, which can guide the registry in their retention strategy. The western regions are more likely to be affected by people around and hope to be contacted regularly to confirm the willingness of donation. Interventions that encouraged bone marrow donors to share their experience in their communities might in turn foster an enhanced registration rate. The northeastern regions were more likely to be affected by the newspaper so the media propaganda will be useful for donor recursion. They were also more likely to have questions about the knowledge of bone marrow donation. Continual communication will help registrants secure information to retain favorable beliefs about donation.

Experiences and unmet needs of family members requested to donate haematopoietic stem cells to an ill relative: findings from a prospective multi-centre study.

BACKGROUND: Despite well-documented physical effects of haematopoietic stem cell (HSC) donation, far less attention has been focused on the psychosocial impact for family donors. This study aimed to better understand the psychosocial aspects of HSC donation by family members, focusing, in particular on their needs for information and supportive care. METHODS: Thirty-one adult HSC family donors from two clinical hospitals were interviewed before, during and 1 month after HSC donation. Interviews explored ambivalence, motivation, perceived pressure, preparedness, the donor-recipient relationship, information and support received and suggestions for improvement. RESULTS: Three main themes about the donation experience were identified: 'call to arms' (focused on the recipient, stressful urgency, making meaning of being a donor, decisional ambivalence), 'proceeding with donation' (living in limbo, unsettling uncertainty, pervasive pain, feeling supported) and 'after the dust settles' (feeling discarded, downplaying role, residual symptoms, dealing with adverse recipient outcomes). Underlying system and communication issues included time for consideration prior to donor work-up, management of confidentiality, information inadequacy and access to support. Donors wanted information about the emotional challenges specific to being a family donor, such as ways in which previous donors coped with recipient death. For donors whose recipient had died, the priority for improved care was follow-up support. CONCLUSION: Our findings emphasise a gap in information and supportive care for family donors and the need for a protocol specifically designed to inform and support family donors before, during and after HSC donation.

Multimedia resources to support the recruitment of committed hematopoietic stem cell donors: Perspectives of the most-needed donors.

BACKGROUND: Recruitment of committed unrelated hematopoietic stem cell donors from the most-needed demographics remains a challenge for donor recruitment organizations worldwide. Multimedia resources are gaining attention as a modality to support recruitment efforts; however, there is a lack of guidance for the development of such tools. This qualitative study explores the perspectives of eligible stem cell donors on an educational whiteboard video about stem cell donation, generating insights into how whiteboard videos and related multimedia may be optimized for donor recruitment. STUDY DESIGN AND METHODS: Eight semistructured focus groups were conducted with 38 potential donors from the most-needed demographics (young, male, and non-Caucasian) after they had watched a 3.5-minute whiteboard video explaining key concepts in stem cell donation (https://youtu.be/V4fVBtxnWfM). Constructivist grounded theory was used to identify themes and to develop a framework for understanding participants' preferred features of recruitment multimedia. RESULTS: Participants identified a range of features contributing to the effectiveness of recruitment multimedia, adding that the whiteboard video is an effective, integrated, and readily accessible format for supporting donor recruitment. Topics that participants felt are important to address include knowledge gaps regarding donation procedures, concerns about donor safety, and the particular need for specific donor demographics. Suggested avenues for improvement include the addition of donor/recipient/patient personal experiences, attention-grabbing hooks, and a call to action including opportunities for further learning. CONCLUSIONS: Several considerations were generated to inform the development of future multimedia for donor education/recruitment and are relevant to donor recruitment organizations worldwide.

Perceptions of patients with early stage breast cancer toward research biopsies.

BACKGROUND: The objective of this study was to describe the perspective of patients with early breast cancer toward research biopsies. The authors hypothesized that more patients at academic sites than at community-based sites would be willing to consider these procedures. METHODS: In total, 198 patients with early stage breast cancer were recruited from 3 academic centers (n = 102) and from 1 community oncology practice (n = 96). The primary objective was to compare the proportion of patients willing to consider donating excess tissue biospecimens from surgery, from a clinically indicated breast biopsy, or from a research purposes-only biopsy (RPOB) between practice types. RESULTS: Most patients (93% at academic sites, 94% at the community oncology site) said they would consider donating excess tissue from surgery for research. One-half of patients from academic or community sites would consider donating tissue from a clinically indicated breast biopsy. On univariate analysis, significantly fewer patients from academic sites would consider an RPOB (22% at academic sites, 42% at the community site; P = .003); however, this difference was no longer significant on multivariate analysis (P = .96). Longer transportation times and unfavorable prior experiences were associated with less willingness to consider an RPOB on multivariate analysis. Significantly fewer patients from academic sites (14%) than from the community site (35%) would consider a research biopsy in a clinical trial (P = .04). Contributing to scientific knowledge, return of results, and a personal request by their physician were the strongest factors influencing patients' willingness to undergo research biopsies. CONCLUSIONS: The current results rejected the hypothesis that more patients with early breast cancer at academic sites would be willing to donate tissue biospecimens for research compared with those at community oncology sites. These findings identify modifiable factors to consider in biobanking studies and clinical trials.

#BeTheMatch: Assessing How Testimonials on Reddit Promote the Importance of Donating Bone Marrow.

This study explores how sharing testimonials on the social media network Reddit may encourage individuals to donate bone marrow. The theory of planned behavior guided a quantitative content analysis of 1,015 Reddit comments about donation. Research questions asked how individuals post about donation and how Redditors engage with this content. Overall, comments addressed more positive than negative outcome, efficacy, and normative beliefs. Comments that discussed beliefs related to registering to donate and the process of donating received significantly higher engagement than other comments. Additionally, comments that included positive outcome beliefs related to registering, positive efficacy beliefs related to registering and donating, and positive normative beliefs related to donating received higher engagement than other comments. Results suggest testimonials may be most effective if they focus on behavior facilitators and if they present donation as a positive norm deviant behavior. Finally, the Reddit forums functioned as places for individuals to seek out and share information. Comments included calls to action and hyperlinks for health resources. This research reveals how organic conversations on Reddit may promote health information seeking and advocacy behavior adoption. Implications for the theory of planned behavior and the use of Reddit as a platform for health promotion are discussed.

Assessment of awareness, knowledge and attitudes about the importance of cadaver and cadaver donation: report of Izmir, Turkey / Evaluación de la conciencia, el conocimiento y las actitudes sobre la importancia del cadáver y la donación de cadáveres: informe de Izmir, Turquía

The aim of this study was to evaluate the awareness, knowledge level and attitudes of the community in I˙zmir/ Turkey about cadaver donation in medical education. A cross-sectional study was carried out. Randomly chosen 245 participants answered twenty items in the questionnaire providing information about their demographics (5 items), awareness and knowledge (10 items), and attitudes (5 items) about body donation. The questionnaire was applied face-to-face. Descriptive statistics presented. Student T test and One-Way ANOVA test were used for statistical analysis. 123 (50.2 %) participants were male and 159 (64.9 %) were between 30 to 59 years old. 185 (75.5 %) respondents knew what the word "cadaver" means. When asked where they would apply if they decided to donate their body, 104 (42.4 %) of the participants gave the answer "state hospital". The mean score of awareness and knowledge about importance of cadaver and body donation (AWKL-Score) was 0.41±0.24 (min:0.00, max:0.90). AWKL-Score was statistically higher in the youngest (18-29 y) and oldest (>60 y) compared to the other age groups (F:4.115; p:0.007). AWKL-Score increased as the level of education increased. The highest AWKL-Score was at post-graduate level (Level 7,8) (F:22.997; p<0.001). The AWKL-Score was higher in public employees and students compared to other occupational groups (F:5.930; p<0,001). The answers to the questionnaire were important indicators of how much society needs to be informed regarding body donation.

El objetivo de este estudio fue evaluar el nivel de conciencia, conocimiento y las actitudes de la comunidad en Izmir / Turquía sobre la donación de cadáveres en la educación médica. Se realizó un estudio transversal de 245 participantes elegidos al azar, que respondieron veinte ítems en el cuestionario proporcionando información sobre su demografía (5 ítems), conciencia y conocimiento (10 ítems) y actitudes (5 ítems) sobre la donación de cuerpos. El cuestionario fue administrado directamente en persona; la prueba T de Student y la prueba ANOVA de una vía se utilizaron para el análisis estadístico. De los participantes 123 (50,2 %) eran hombres y 159 (64,9 %) tenían entre 30 y 59 años. 185 (75,5 %) encuestados sabían lo que significa la palabra "cadáver". Cuando se les preguntó dónde se registrarían, en caso de decidir donar su cuerpo, 104 (42,4 %) de los participantes respondieron "hospital estatal". La puntuación media de conciencia y conocimiento sobre la importancia del cadáver y la donación de cuerpos (puntuación AWKL) fue de 0,41 ± 0,24 (mínimo: 0,00, máximo: 0,90). Estadísticamente el puntaje AWKL fue más alto en los más jóvenes (18-29 años) y mayores (> 60 años) en comparación con los otros grupos etarios (F: 4,115; p: 0.007). AWKL-Score aumentó a medida que aumentó el nivel de educación. El puntaje AWKL más alto fue en el nivel de posgrado (Nivel 7,8) (F: 22,997; p <0,001). El puntaje AWKL fue mayor en empleados públicos y estudiantes en comparación con otros grupos ocupacionales (F: 5,930; p <0,001). Las respuestas al cuestionario fueron indicadores importantes de cuánto necesita la sociedad estar informada sobre la donación de cuerpos.

Who is willing to donate their bodies in China? Perceptions, attitudes and influencing factors among citizens of Changsha.

Body donation has far-reaching significance for modern medical research and education. However, body donation in China lags far behind the demand. To assess the perception and attitude toward body donation, a survey of 2535 community residents was conducted in Changsha. The result showed that 89.5% of the respondents have heard about body donation through different sources, such as public media, medical college, and hospital. However, 61.8% of the respondents have limited knowledge of these body donation programs. The majority of respondents believed that body donation would contribute to researches in neuroanatomy, tumor biology, and ophthalmology, as well as anatomical education for medical students, and surgical training for clinicians/surgeons. Regarding the public's willingness to donate, 27.5% of respondents expressed a clear willingness. Further analysis revealed that people aged above 60 are less willing to donate. Compared with people having Confucianism funeral belief, those without the belief were 9.8 times more willing to donate. Furthermore, it was shown that respondents who had a good understanding of body donation were more willing to donate their bodies. Moreover, people thought body donation was beneficial to medical research and education were almost 10 times more willing to donate compared to those who thought it had no benefit. To promote body donation in China, greater efforts need to be made in promoting body donor programs and so increasing the public's perception toward body donation. Moreover, re-assessing and re-interpreting Confucianism beliefs regarding body donation also needs to be considered for future promotion of body donation in China and other East Asian countries.

Evaluation of the Educational Needs of Organ Donors After Transplantation Surgery.

OBJECTIVE: This study involved individuals (donors) who underwent transplant surgery and evaluated their educational requirements for meeting self-care needs in the postdischarge period. MATERIALS AND METHODS: This descriptive study consisted of 73 donors who underwent surgery for organ donation in the Sisli Florence Nightingale Training and Research Hospital in Istanbul and who were intended to be discharged after the organ donation. Data were collected using the Donor Information Form and the Post-Organ Donation Educational Needs Survey, which were prepared by researchers based on literature. RESULTS: The mean age of the participants was 38.86 ± 0.78 years. Of them, 54.8% were male, and 38.4% were high school graduates. All the donors (n = 73) received discharge education, and all the education was given by physicians and nurses. But, most donors (63%) stated that the discharge education was not adequate in meeting their needs. Participants received the lowest mean score (2.41 ± 1.27) on the item of "I feel calm and peaceful." The donors' mean total score on the survey was 137.81 ± 25.96 (minimum 76; maximum 170). CONCLUSION: The donors' educational needs for postdischarge self-care were high. It is necessary to determine the educational needs of donors to plan the discharge education for self-care management in home care.