Donor Families Research Articles

Transformative Learning Among Organ Procurement Organization Donor Family Volunteers.

Introduction: Some family members who previously made the decision to donate a family member's organs support the organ procurement organization (OPO) through volunteer work. Volunteers were asked to describe their family's organ donation story to educate the general and medical communities about organ donation. This study explored the transformative learning experienced by volunteers during and following the organ donation consent process and throughout their volunteer work. Methods/Approach: A narrative inquiry research methodology and transformative learning theoretical framework was used and 6 volunteers were recruited to participate. Two semistructured virtual interviews were conducted. Interviews were transcribed, radically reduced, and subjected to holistic-content and holistic-form narrative analysis. Findings: Participants experienced strong emotional responses during and after the loss of their family member, characterized as a period of disorientation, which lasted for an extended period preventing transformative learning. After the OPO contacted participants regarding the opportunity to volunteer, participants experienced a period of self-examination when they reengaged with the topic of organ donation. Critical reflection occurred through the act of storytelling about their family's organ donation story during their volunteer work. Storytelling to the community facilitated making meaning of their loss and transformations. Conclusion: Volunteering for an OPO played an important role by initiating self-examination and critical reflection of their prior assumptions. Through storytelling, participants reflected on their roles and made meaning of their organ donation experiences. The act of inviting donor families to reengage with the topic of organ donation through volunteer work fostered positive permanent meaningful transformations.

P.472: Organ donor family experience in United Arab Emirates.

P.472: Organ donor family experience in United Arab Emirates.

261.9: A virtual community assertive treatment model for organ donor family aftercare in the United States.

261.9: A virtual community assertive treatment model for organ donor family aftercare in the United States.

Potential donor family behaviours, experiences and decisions following implementation of the Organ Donation (Deemed Consent) Act 2019 in England: A qualitative study

BackgroundIn May 2020, England implemented “deemed consent” legislation, to make it easier for individuals to donate their organs and convey their decision when alive. Families are supposed to support the decision but can still override it if they disagree. We aimed to learn more about this changed role when families were approached about organ donation. MethodsA qualitative study using semi-structured interviews with families, feedback from nurses, comparisons with audit data, and public involvement. We used framework analysis with a health systems perspective and utilitarian theory to explore if the law worked. Findings103 participants were interviewed representing 83 potential donation cases. In 31/83 (37%) cases donation was fully supported, in 41/83 (49%) cases families supported retrieval of some organs, tissues and procedures, and in 11/83 (13%) cases families declined completely. Themes explaining why the law was not (yet) working included: Understanding and agreeing the family’s role, confusion about deemed consent, not supporting the deceased expressed decisions, organ donation as too much of a harm, the different experiences of donation pathways, transition from end-of-life to organ donation discussions, experiences of ‘consent’, paperwork and processes. Families frequently questioned if their relative wanted to have a surgery rather than supporting the person who died to save lives. ConclusionFamilies use the unique experience of their relative dying in intensive care to create alternate narratives whereby the outcome satisfies their own utility and not necessarily those of the potential donor. New public ongoing media campaigns crafted to be more supportive of organ donation as a benefit to transplant recipients could help families overcome the many difficulties they encounter at the bedside. Implications for clinical practiceThe soft opt-out policy has not empowered nurses to help families at their most vulnerable to increase their support for and consent to deceased organ donation.

Moral injury: An unspoken burden of transplant surgery

Moral injury in health care is characterized as the lasting psychological, biological, and social impact on providers that occurs following an adverse patient outcome. Moral injury can contribute to second victim syndrome and lasting psychological harm. Although many surgeons face moral injury due to patient acuity and the potential for intraoperative or postoperative complications, the transplant ecosystem compounds the impact of moral injury. Institutional blame placed on the transplant surgeon following a posttransplant death or graft loss is magnified by public reporting. Centers whose outcomes fall below threshold levels are subject to regulatory citation and financial loss. Moral injury can also result in risk aversion, limiting access to transplants for higher-risk candidates and reducing acceptance of marginal organs hurting donor families. Strategies to increase resilience, reduce accusation and blame, and focus on system quality improvement are vital to mitigate the impact of moral injury on transplant professionals. The transplant community must proactively work to reduce moral injury to protect surgeons, ensure access to life-saving transplant procedures, and avoid unnecessary organ offer declines.

Experiencia en DAC cardiaca en la Comunidad Valenciana: programa de extracción cardiaca extrahospitalaria

IntroductionIn Spain, since 2020, hearts obtained from donation after circulatory determination of death (DCD) have been used for heart transplants. We show our experience from the beginning of the heart DCDs program. An out-of-hospital cardiac extraction protocol has been implemented within the Valencian Community. Materials and methodFrom November 2022 to April 2024, 21 cardiac assessments have been performed in the context of DCD.Donor inclusion criteria: donor <55years old; family donation consent; functional warm ischemia time <30min.Donor exclusion criteria, additional to those of a cardiac donation: adrenaline infusion; dobutamine infusion; norepinephrine infusion >0,3μg/kg/min.This is a retrospective descriptive study. ResultsOf the 21 possible donors, 19 were valid hearts, 2 of them were for a hospital outside the community. The mean age of the donors was 40.4years, most of them men. In total, 17 patients were transplanted in our hospital. The mean cardiac ischemia time was 136.41min. Primary graft failure was described in 8 patients. ConclusionsThe cardiopulmonary bypass allowed continuous monitoring of aerobic and anaerobic metabolism, correct emptying of the cardiac chambers and the administration of cardioplegia with pressure, temperature and flow control.Our experience highlights the possibilities of success with hearts obtained from a DCD, representing an increase in the number of donors and a decrease in the waiting time for the transplant.

P-783 Factors associated with donor-conceived adolescents’ intention to request information about their open-identity oocyte or sperm donor

Abstract Study question Is adolescents’ intention to request information about their open-identity donor associated with donor type, family form, or adolescent gender? Summary answer Adolescent girls were less likely than boys to intend requesting information about their open-identity donor, irrespective of donor type (oocyte/sperm) and family form. What is known already Individuals conceived by open-identity gamete donation have the right to obtain identifying information about their donor. However, there is little knowledge about the level of interest in requesting such information as donor conceived (DC) persons approach the age when they can obtain this information, as well as their interest in contact with the donor and persons who share the same donor. The present study aims to investigate factors associated with adolescentś intention to request information about their open-identity donor and their interest in contact with the donor and donor-siblings. Study design, size, duration The study is based on the fifth wave of data collection in the prospective, longitudinal Swedish Study on Gamete Donation, conducted in 2022-2023. Participating parents provided consent to contact their donor conceived children (ages 13-16), who were approached with a postal/web-survey. A total of 98 adolescents participated (77% response rate): adolescents conceived with sperm donation in lesbian-couple (SD-lesb, n = 48) and heterosexual-couple families (SD-het, n = 27), and those conceived with oocyte-donation in heterosexual-couple families (OD-het, n = 23). Participants/materials, setting, methods The study was part of the longitudinal Swedish Study on Gamete Donation, including couples starting gamete donation treatment at university hospitals between 2005-2008. The current fifth wave of data collection is the first to include children self-report. Participating adolescents included 48 girls and 50 boys with a mean age of 14.44 for girls and 14.28 for boys. The survey comprised of socio-demographics, study-specific items and validated instruments. Data was analyzed with multinominal regression analysis. Main results and the role of chance Roughly half (56%) of the adolescents intended to request information about their open-identity donor, while 12% planned not to and 32% were unsure. Multinominal regression analysis showed a significant effect for gender, but not for family/donation type (SD-lesb, SD-het, OD-het). Girls were significantly more likely than boys to state that they did not intend to request donor information (OR = 4.66, 95% CI [1.13, 19.34]). Among those adolescents who planned to request identifying donor information, a subset stated that they intended to contact the donor (30% boys, 15% girls). Concerning interest in contact with persons who share the same donor, participants were evenly divided between an interest (29%) or no interest (27%) and remaining were unsure (44%). No differences were found with regard to groups or gender. Limitations, reasons for caution The relatively small sample size could affect the results of the statistical analysis, making it harder to get significant results and creating large confidence intervals. There is a possible attrition bias with less well-functioning families not participating. The study was conducted within the Swedish context of identity-release gamete donation. Wider implications of the findings Approaching adulthood, about half of donor-conceived individuals plan to request information about their open-identity donor, highlighting that many DC people want this possibility. The gender difference found contrasts with earlier research findings and points to the need to understand the specific motivations of different groups of DC adolescents. Trial registration number not applicable

Sowing “seeds of trust”: How trust in normothermic regional perfusion is built in a continuum of care

Normothermic regional perfusion (NRP) is a promising technology to improve organ transplantation outcomes by reversing ischemic injury caused by controlled donation after circulatory determination of death. However, it has not yet been implemented in Canada due to ethical questions. These issues must be resolved to preserve public trust in organ donation and transplantation. This qualitative, constructivist grounded theory study sought to understand how those most impacted by NRP perceived the ethical implications. We interviewed 29 participants across stakeholder groups of donor families, organ recipients, donation and transplantation system leaders, and care providers. The interview protocol included a short presentation about the purpose of NRP and procedures in abdomen versus chest and abdomen NRP, followed by questions probing potential violations of the dead donor rule and concerns regarding brain reperfusion. The results present a grounded theory placing NRP within a trust-building continuum of care for the donor, their family, and organ recipients. Stakeholders consistently described both forms of NRP as an ethical intervention, but their rationales were predicated on assumptions that neurologic criteria for death had been met following circulatory death determination. Empirical validation of these assumptions will help ground the implementation of NRP in a trust-preserving way.

Families of organ donors between Jews and Arabs in Israel during a military operation: Constructing meaning through participation in an epistemic Community - Media analysis of two cases

This study explores how bereaved families of organ donors become participants in an ‘imagined epistemic community’ of organ donor families, amidst a national conflict between Jews and Arabs in Israel. Utilizing a media case study approach, we identified factors contributing to the creation of this bi-national community and examined what the families received in return for their part. Additionally, we explored the reasons behind the community splitting into two separate entities. Based on the media reports, we suggest that entry into the community is conditional on donating organs during wartime, granting these families a special moral status in return, resonating messages of altruism, solidarity and coexistence. Further to this, we propose that when the Arab family felt they did not receive the expected recognition, they withdrew from the common community in favor of a separate national community.

The Ethical Challenges of Umbilical Cord Blood Stem Cell Banking: A Qualitative Study

Background: Umbilical cord blood serves as a potent source of hematopoietic stem cells, utilized in treating specific diseases and preserved in blood banks. Objectives: This study aims to explore the ethical issues associated with these repositories. Methods: This qualitative research involved conducting 14 interviews with experts and the families of recipients or donors of umbilical cord blood. Participants were selected purposefully from May to November 2021. Results: The investigation identified five principal ethical challenges: presentation of information, interpersonal relationships among involved parties, respect for human dignity, adherence to rules and regulations, and the handling of tissue samples. These challenges encompassed various categories and subcategories, including informed consent, communication and advertising of information, financial considerations, conflicts of interest, professional interactions, ownership rights concerning the child and parents, privacy and confidentiality issues, compliance with regulations and guidelines, and the clinical and research uses of the tissue samples. Conclusions: The study unveiled significant ethical concerns in the domain of umbilical cord blood stem cell banking. Addressing these ethical dilemmas necessitates the involvement of health policymakers and medical ethics experts, along with a comprehensive understanding of these banks' multifaceted nature by the community.

Leading the transition to ethical human body sourcing in Africa: The South African experience

BackgroundThe use of human bodies for anatomy education and research forms an integral part of the training of health professionals around the world. However, the ethical acquisition of human remains for this purpose has been a challenge in many countries, particularly for those on the African continent. South African institutions have however, been able to progressively transition to a more ethical approach to human body acquisition. The aim of the current study was to investigate the provenance of human bodies and the number used in South African health sciences institutions during the period 2017–2021. Methodsan online self-administered anonymised questionnaire was circulated to all health sciences institutions in South Africa. Questions were focused on establishing the provenance and the associated number of bodies and body donor programmes. Resultsresponses were received from thirteen of the fourteen South African institutions. All thirteen institutions use human bodies for teaching and research, with the majority of the institutions being reliant on bequests (77%) and family donations (62%), and less on unclaimed remains (46%). Most institutions have established body donor programmes. Four institutions were negatively affected by the effects of the pandemic. Memorial services, which continued during the pandemic, were conducted by eight of the thirteen institutions. ConclusionSouth Africa is leading the transition to the ethical acquisition of human remains on the African continent. It is hoped that South African institutions will soon transform to the exclusive sourcing of bodies through willed donation and provide guidance and support for the other countries on the continent.

Ritual and Power in Medicine: Questioning Honor Walks in Organ Donation.

Honor walks are ceremonies that purportedly honor organ donors as they make their final journey from the ICU to the OR. In this paper, we draw on Ronald Grimes' work in ritual studies to examine honor walks as ceremonial rituals that display medico-technological power in a symbolic social drama (Grimes, 1982). We argue that while honor walks claim to honor organ donors, ceremonies cannot primarily honor donors, but can only honor donation itself. Honor walks promote the quasi-religious idea of donation as a "good death," and mask the ambiguity and discomfort inherent in organ donation to promote greater acceptance by the medical community. While some goods may be achieved through honor walks, particularly for donor families, it is still important to examine the negative work done by this practice.

Dual Advocates in Deceased Organ Donation: The Potential for Moral Distress in Organ Procurement Organization Staff.

AbstractOrgan procurement organization (OPO) staff play an essential role in the facilitation of organ donation as they guide family members and loved ones of dying patients through the donation process. Throughout the donation process, OPO staff must assume the role of a dual advocate, considering both the interests of the donor (which often include the wishes of the donor's family) and the interests of potential recipient(s). The benefits of this role are well established; however, minimal literature exists on the ways this role can cause moral distress in OPO staff, who frequently face scenarios in which adhering to the wishes of a donor family may compromise donation potential but failing to honor donor family requests may result in further emotional burden for the family. Given the frequency with which these ethically complex situations exist during donation, OPO staff are at heightened risk for experiencing moral distress and burnout, yet they are seldom acknowledged in the existing moral distress literature. As a result, it is unclear whether the current practices available to mitigate moral distress are beneficial for this population.

Do Mixed Religions Make Families More Generous? An Empirical Analysis Based on a Large-Scale Survey of Chinese Families

This study focuses on the relationship between mixed religions and family donations in China as the object of analysis, where individual donations are primarily in the form of family contributions. Although there is considerable research on the relationship between religion and individual donations, the academic community has yet to clarify the connection between mixed religions and family donations. Based on the large-scale survey data from the 2020 China Family Panel Studies, this study employs econometric models such as probit and tobit models to examine the relationship. To mitigate endogeneity and enhance the robustness of the conclusions, this research also conducts instrumental variable analysis and robustness analysis. The study finds that the influence of mixed religions on family donations is greater than that of non-mixed religions, but this influence is more pronounced in families with higher donation levels. Heterogeneity analysis reveals that mixed religions have a greater impact on donations in families headed by individuals aged 41–59, females, those with no religious affiliation, residents of urban areas, and families in the western and northeastern regions. Furthermore, the impact of mixed religions on family donations is higher only when there is a combination of one or three religions. Additional analysis indicates that households with lower educational attainment, non-Party members, individuals suffering from illnesses, and unmarried females are more likely to choose mixed religions.

FAMILY’S VIEW REGARDING THE DECISION TO BE A CORNEA DONOR: A PHENOMENOLOGICAL STUDY

Introduction and Objective: Family has an important role in the corneal donor process. Corneal extraction can be done when a potential donor dies, so it requires family involvement and support. The purpose of this study is to explore the family's view on the decision to be a cornea donor so that we can obtain a deep understanding on this issue.&#x0D; Methods: Phenomenological studies were conducted in Yogyakarta, Indonesia on families of prospective cornea donors (n=6) and registered cornea donor candidates (n=6). Data were collected using in-depth interviews and study documents. Data were analyzed using the Colaizzi’s method.&#x0D; Results: Family participants' knowledge and understanding of the urgency and procedure of corneal donors is the main point that constructs their view of corneal donors. Most family participants consider being corneal donors a good thing to do. All participants expressed their willingness to carry out the will of prospective donors, but there was no guarantee they would do so. Fifty percent of participants’ families are also interested in becoming corneal donors in consideration of religious organizations, educational background, and experience participating in activities with the Eye Bank and the donors.&#x0D; Conclusion: Families have an important role in the corneal donor process because they will carry out the will of prospective donors and serve as liaisons for the Eye Bank. Family involvement in the promotion of the cornea donor program is needed.

Geographical Impact of Human Gift Registries in West Virginia: A Model for Centralized Resources in Human Anatomy Education

The West Virginia State Anatomical Board oversees three Human Gift Registries (HGRs), which allocate human whole body donations to support the educational, outreach, and research missions of our universities. These HGRs primarily function to meet the demand for anatomy education at the institutions that house them. Two of these HGRs, however, demonstrate a unique centralized model, in which approximately half of the donors are reallocated to other institutions to support their missions, and thus, have an impact far greater than in West Virginia (WV) alone. In this perspective, the number of donations received at WV HGRs over the past seven years are reported by institution, as well as the geographical distribution of our donors over the past five years. We also discuss the impact of the COVID-19 pandemic on human anatomy education. This model of centralized HGRs in WV may be of interest to other State Anatomical Boards, as well as the families of past and prospective donors in WV. The state of WV remains committed to dissection-based human anatomy education, and we are forever grateful to our donors who make this experience possible.

The American Society of Transplant Surgeons Consensus Statement on Normothermic Regional Perfusion.

On June 3, 2023, the American Society of Transplant Surgeons convened a meeting in San Diego, California to (1) develop a consensus statement with supporting data on the ethical tenets of thoracoabdominal normothermic regional perfusion (NRP) and abdominal NRP; (2) provide guidelines for the standards of practice that should govern thoracoabdominal NRP and abdominal NRP; and (3) develop and implement a central database for the collection of NRP donor and recipient data in the United States. National and international leaders in the fields of neuroscience, transplantation, critical care, NRP, Organ Procurement Organizations, transplant centers, and donor families participated. The conference was designed to focus on the controversial issues of neurological flow and function in donation after circulatory death donors during NRP and propose technical standards necessary to ensure that this procedure is performed safely and effectively. This article discusses major topics and conclusions addressed at the meeting.

Embodied sociotechnical imaginaries: how donor-conceived people imagine identity, family and reprodigital futures beyond regulation.

Sociological scholarship has begun to explore imaginaries of family and reproduction, yet less work has focused on the emerging social form of the donor family. In this article, we consider the embodied sociotechnical imaginaries of donor-conceived people, exploring their reflections, judgements, hopes, and predictions regarding donor conception. Combining reflexive thematic analysis of free-text survey responses from sperm donor-conceived (n = 90) and egg donor-conceived (n = 1) and data from semi-structured interviews with sperm donor-conceived people (n = 28), conceived in both clinical and non-clinical contexts in Australia, we analyse donor-conceived people's imaginings of family, identity, and the practice of donor conception in the digital age. Our analysis centres the donor-conceived body that imagines, and in doing so, highlights the entanglements of reproductive and digital technologies, and the humans and institutions that drive their uptake. We argue that leveraging the imaginative and political capacities of donor-conceived people is a productive approach that illuminates possible (re)directions of the assisted reproduction industry as well as illustrating potential policy futures.

Evaluating ApoL1 Genetic Testing Policy Options for Transplant Centers: A Delphi Consensus Panel Project with Stakeholders.

Apolipoprotein L1 (ApoL1) variants G1 and G2 are associated with a higher risk of kidney disease. ApoL1 risk variants are predominantly seen in individuals with sub-Saharan African ancestry. In most transplant centers, potential organ donors are being selectively genetically tested for ApoL1 risk variants. Transplant programs have highly variable ApoL1 testing practices and need guidance on essential ApoL1 clinical policy questions. We conducted a Delphi consensus panel focused on ApoL1 clinical policy questions, including who gets tested, who decides whether testing occurs, how test results are shared, who receives test results, and how test results are used. A total of 27 panelists across seven stakeholder groups participated: living kidney donors ( n =4), deceased donor family members ( n =3), recipients of a deceased donor kidney ( n =4), recipients of a living donor kidney ( n =4), nephrologists ( n =4), transplant surgeons ( n =4), and genetic counselors ( n =4). Nineteen panelists (70%) identified as Black. The Delphi panel process involved two rounds of educational webinars and three rounds of surveys administered to panelists, who were asked to indicate whether they support, could live with, or oppose each policy option. The panel reached consensus on one or more acceptable policy options for each clinical policy question; panelists supported 18 policy options and opposed 15. Key elements of consensus include the following: ask potential donors about African ancestry rather than race; make testing decisions only after discussion with donors; encourage disclosure of test results to blood relatives and organ recipients but do not require it; use test results to inform decision making, but never for unilateral decisions by transplant programs. The panel generally supported policy options involving discussion and shared decision making among patients, donors, and family stakeholders. There was general opposition to unilateral decision making and prohibiting donation altogether.

Experiences of Intensive Care Unit Nurses in Caring for Brain-Dead Donors.

Organ donation after brain death is an alternative to living organ donation, which has various risks and is a means of addressing organ supply shortages. In South Korea, primarily, the organ donation decision is made by the brain-dead donor's family under the guidance of medical staff. Intensive care unit nurses, who are consistently present with patients, can significantly influence families' decision-making process. Hence, nurses' experiences of caring for brain-dead donors should be explored to obtain detailed explanations of the related complex social phenomena. This qualitative study aimed to understand the structure and nature of nurses' experiences using Colaizzi's phenomenological method. Data were collected from 10 intensive care unit nurses from a hospital-based organ procurement organization between June 27 and September 10, 2022. Twelve themes and 5 components were identified from participants' interviews, including "nursing with regret," "enduring agony from repeatedly caring for deceased organ donors," "lack of a support system," "deep emotional pain and scarring left after care," and "balancing emotions." It is necessary to clarify the required nursing interventions and role of nurses in intensive care units who care for brain-dead donors and develop specific guidelines to assist them in their work.