Donor-linking provisions in New Zealand: counselling roles, concerns and needs.

Donor-linking where those genetically related through donor conception (e.g. donor-conceived persons (DCP), donors and siblings), or recipient parents, search for and connect with each other, is increasingly common, both in identity-release jurisdictions where donors' identifying information may be released to DCP, usually when they become adults - and in anonymous jurisdictions, e.g. as a result of direct-to-consumer DNA testing. In this paper, we explore New Zealand fertility clinic counsellors' views regarding their donor-linking roles and their concerns and needs in relation to current and anticipated service provision. Counsellors believed that fertility service providers had a longer-term responsibility to offer donor-linking services to ensure the wellbeing of all parties affected by donor conception. They perceived their role as complex and multifaceted, encompassing psychoeducation, mediation, advocacy, facilitation, relationship counselling, and therapeutic intervention. They identified significant service provision challenges however, including inadequate staffing, training, time and prioritisation of donor-linking, and inadequate legislative provisions to support practice. Counsellors called for clarity in legislation addressing different contexts of donation and providing measures to ensure the recording of and access to identifying information. They expressed a need for comprehensive, funded donor-linking services, therefore facilitating choice, and services staffed by professionally trained and supported staff.

Victim identifiability, number of victims, and unit asking in charitable giving.

This study examines the identifiable victim effect (being more willing to help an identified victim than an unidentified), the singularity effect (i.e., being more willing to help a single identified victim than a group of identified victims), and unit asking (first asking donors for their willingness to donate for one unit and then asking for donations for multiple units) in charitable giving. In five studies (N = 7996), we vary the level of identifiability, singularity, and group size. We find that unit asking is making people more sensitive to the number of people in need. Further, while the level of identifiability influences affective reactions, this effect does not extend to donations and, thus, is not affected by unit asking. We do, however, find an "emotion asking effect" where asking donors to rate their affect before donating increase donation levels (compared to donors asked to rate affect after). Emotion asking was attenuated when combined with unit asking.

Death anxiety, sense of meaning in life, and willingness to body donation among nursing students in anatomy course: An explanatory sequential mixed study.

BACKGROUND: Anatomy education is a fundamental part of clinical nursing, but anatomy courses may lead to a range of psychological changes, such as death anxiety and sense of meaning in life. Such experiences and changes may influence student's willingness to donate their body. There is insufficient evidence on whether anatomy courses bring about these changes, and the reasons behind experiences are unclear. Focusing on these changes is essential to improve anatomy education in nursing and to promote the mental health of students in the nursing field. OBJECTIVES: To explore changes and underlying reasons for death anxiety, sense of meaning in life, and the willingness to donate a body before and after anatomy courses. DESIGN: An explanatory sequential explanatory mixed-methods study. PARTICIPANTS: A total of 60 students completed quantitative surveys and 16 students from the sub-samples of the quantitative stage were included in the qualitative interviews. All students were from a comprehensive university in Changsha, Hunan Province, China. METHODS: Data were collected from September 2022 to April 2023, including two rounds of questionnaire surveys and one interview. The questionnaires included sociodemographic data, the Death Anxiety Scale (CT-DAS), the Meaning of Life Scale (MLQ), and a body donation willingness question. Interviews were conducted based on the research objectives. The statistical methods included descriptive statistics, z-tests, and thematic analysis. RESULTS: Quantitative results showed a decrease in emotional dimension of death anxiety (z = -2.534, P < 0.05) and an increase in body donation willingness (z = -3.183, P < 0.05). Qualitative analysis revealed cognitive experience and value assessment may relate to the changes. Based on the two themes, the reduction of death anxiety in emotional dimension can be further attributed to four factors: demystification, instrumentalization, desensitization, and respect and gratitude towards donors. The increase in willingness to donate bodies can be further attributed to two aspects: increase in knowledge of body donation and the affirmation of the value of donation. CONCLUSION: The study found that students experience a decrease in death anxiety in the emotional dimension and an increased inclination to donate their bodies after anatomy courses, which may be related to cognitive experience and value assessment. Future nursing anatomy education could delve deeper into these two perspectives and support students to positively cope with death anxiety and rethink body donation through enriching death education activities such as donor memorial ceremonies. These results provide a basis for designing anatomy courses and improving the psychological well-being and professional competence of nursing students.

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.

Relationship Between the Decision-Making Balance Regarding Organ Donation and Level of Empathy.

OBJECTIVES: In Turkey, the rate of organ donations has not reached the desired level. Although the vital importance of organ transplantation is known, the low participation in organ donation is an issue that needs to be examined meticulously. Organ donation decisions can be affected by demographic factors, such as family, personality traits, and religion and by psychological factors, such as attitude, intention, and sacrifice. For this reason, it is important to find the reasons that prevent people from being a donor and to develop intervention methods for them. In this context, we aimed to evaluate the relationship between the balance of decision-making regarding organ donation and the level of empathy. MATERIALS AND METHODS: A total of 638 adults (mean age of 25.32 ± 9.95 years; n = 468 female participants and n = 170 male participants) voluntarily participated in the study. We used the Organ Donation Decisional Balance Survey to measure basic information on participants' personal valuations on the importance of positive and negative aspects of donor decisions. We used the Empathy Quotient scale to determine the empathy level of participants. We determined the relationship between variables using Pearson correlation analysis. RESULTS: Organ donation balance had positive correlations with measures of cognitive empathy subscale (r = 0.115; P < .01), emotional reactivity subscale (r = 0.117; P < .01), and social skills subscale (r = 0.084; P < .05). CONCLUSIONS: We found a positive relationship between empathy and the individual decision-making balance on donation; therefore, empathy development and altruism may affect organ donation decisions.

Searching for and making genetic connections: recommendations for practice from donor conceived adults in the UK.

RESEARCH QUESTION: What are the support needs of donor conceived individuals who are searching for or open to matching with genetic connections? DESIGN: A total of 88 donor conceived adults in the UK participated in an online survey open between January and August 2022. Participants were asked about their level of awareness of current resource provision, recommendations for resources to support the process of searching for genetic connections, and recommendations for resources to support with feelings about searching for or being found by genetic connections. RESULTS: Participants were found to have varying levels of awareness of the resources available to them, with 39% describing themselves as aware, 41% as partly aware and 20% as unaware. Their recommendations for practical and emotional resources also varied. The most recommended resources for practical support were DNA testing and changes to UK law. The most recommended resources for emotional support were counselling and peer and other support groups. CONCLUSIONS: The impact of legal and technological changes such as direct-to-consumer DNA testing and the legal transition to identifiable donation may be felt by donor conceived individuals irrespective of their year of birth. The wishes of donor conceived individuals for different support resources should be borne in mind by practitioners, regulatory bodies, and policy makers going forward.

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.

Long-term follow-up of mental health and satisfaction in a Swedish sample of sperm and egg donors after open-identity donation.

RESEARCH QUESTION: How is the mental health of open-identity gamete donors and their satisfaction with their contributions 14-17 years after acceptance as a donor? DESIGN: The Swedish Study on Gamete Donation is a longitudinal study comprising women and men who were accepted as donors at seven Swedish university clinics between 2005 and 2008. The latest (fifth) follow-up included 215 open-identity donors (response rate 87%): 123 oocyte donors and 92 sperm donors. The donors answered a questionnaire regarding their perceptions, experiences and expectations after gamete donation 14-17 years previously. RESULTS: The donors were satisfied with the experience of donating, and no differences were detected between sperm and oocyte donors. Oocyte donors were more than twice as likely to feel that family and friends were proud of their donation compared with sperm donors (51% versus 23%, P < 0.001). In total, six donors regretted their donation: four oocyte donors and two sperm donors. Sperm donors were more frequently satisfied with the financial compensation compared with oocyte donors (P = 0.005). No difference in the development of symptoms of anxiety or depression was detected 14-17 years post-donation. CONCLUSION: Long-term follow-up studies on donors are important for recruiting donors, and for recipients and the children who will be conceived with donated gametes. The results from the current study indicate that donors, generally, have good mental health and do not regret their decision to donate gametes. These findings are reassuring for all parties involved.

Examining willingness to donate frozen oocytes among women of reproductive age.

RESEARCH QUESTION: What are the predictors of willingness to donate frozen oocytes among women of reproductive age in Australia? DESIGN: An online survey involving 303 women of reproductive age (18-49 years) in Australia who had not frozen their oocytes or planned to freeze their oocytes in the next 12 months. The survey assessed demographic variables, prototype willingness model variables (attitude, subjective norm, prototype similarity and prototype favourability) and additional variables (altruism, empathy and infertility awareness) as predictors of hypothetical scenarios of willingness to donate frozen oocytes. A multivariate repeated measures analysis of variance explored differences in willingness to donate frozen oocytes. Hierarchical multiple regression analysis examined predictors of donor willingness. RESULTS: Women's willingness to donate their frozen oocytes was higher for donating to a friend or family member and to research compared with an egg bank or fertility clinic, or a couple advertising online for an egg donor (all P < 0.001). The prototype willingness model variables were significant predictors of willingness to donate showing slightly varied patterns across four scenarios. After accounting for demographics, regression models including prototype willingness model variables and additional variables accounted for 45-64% of variance in donor willingness. CONCLUSIONS: Frozen oocyte donation may be facilitated by improving attitudes towards donation and establishing positive images of donors. Professionals requiring frozen oocytes for research could focus on creating a sense of social approval for donating in this context. Encouraging frozen oocyte donation could increase access to oocytes for IVF treatment and aid in reducing the psychological burdens associated with involuntary childlessness.

Attitude of the Older Population Toward Controlled Asystole Donation.

INTRODUCTION: Studies about the knowledge of and attitude toward new lines of organ donation in a group of older people are important due to the increase in older organ donors. OBJECTIVES: To analyze the attitude of citizens over 65 years of age in southeastern Spain toward controlled asystole donation (CAD) and to determine the psycho-social profile that influences this attitude. METHODS: The study population consisted of citizens over 65 years of age. A representative sample was obtained in southeastern Spain (N = 420). A questionnaire about attitudes toward CAD was used, detailing in the questionnaire that this is a type of donation from people who have died of circulatory and respiratory criteria after the limitation of life support treatment. Several psychosocial variables were also taken into account. Statistical analysis included the χ2 test and multivariate analysis. RESULTS: The completion rate was 84% (n = 351). Favorable attitude toward organ donation and transplantation (ODT) was 98% (n = 344) overall, and CAD was viewed favorably by 45% (n = 158). The psychosocial variables that influenced attitude toward CAD were mainly having received a talk about ODT (odds ratio [OR] 5.6), knowing the opinion of one's partner (OR 7.95), acceptance of cremation (OR 1.09), and acceptance of autopsy (OR 3.002). CONCLUSIONS: The attitude of older people toward CAD is unfavorable despite a willingness to support ODT in general. This attitude is influenced by variables of social and family dialogue about ODT, attitude to body manipulation, and having received information about ODT.

Attitudes to Organ Donor Registration in England Under Opt-Out Legislation.

Introduction: In England, everyone is considered an organ donor unless they have registered for opt-out donation. Research Question: This study evaluated positive statements and negative affective attitudes against anticipated organ donor status and whether the order in the attitudes and statements presented impacted organ donor intention under an opt-out system. Design: A quasi-experimental mixed between-within design was employed with participants assigned to 1 of 2 conditions. Participants in the first condition received negative affective attitude statements followed by positive statements. This was reversed in the second condition to combat ordering effects. Participants (N = 679) were asked about their donor status under an opt-out system. There were three groups: opt-in (actively), opt-out/not sure, and deemed consent (no objection). Organ donor intentions were measured at three intervals: baseline, post-positive statements, and post-negative attitudes. Results: Approximately 10% of participants would opt-out or were unsure of their intentions to be an organ donor under an opt-out system. Significant effects were found in both positive statements and negative affective attitudes. All groups expressed greater medical mistrust and were most influenced by cognitive attitudes. Conclusions: Under the opt-out system in England, it is anticipated that the majority would actively opt-in or have no objection to being automatically registered as an organ donor. Public health campaigns would benefit from promoting the most influential positive statements and refuting the most detrimental negative attitudes to increase intentions of those who plan to opt-out or are unsure.

We want to feel valued: eggs donors' experiences of donation.

Egg donation in New Zealand is identity-release, with donor-conceived individuals having the right to access donors' identifying information at the age of 18. It also allows donors and previously unknown recipients to meet prior to donation. Further, donation is altruistic, although reimbursement of costs is possible. In our previous paper we explored the motivations of 21 egg donors in this context and reported that they are motivated to donate as an act of personal gift-giving to recipients who may become known to them through donation, and that they do not want to be compensated for this financially. In this paper, drawing on in-depth interviews, we report on donors' experiences of the donation process and subsequent to donation. Donors understood their donations to be a significant act, both for the recipients and their families, but also for themselves, particularly given the multiple sacrifices which they willingly made. Donors wished for their gift and their role to be valued and acknowledged through being appreciated, informed, involved and supported by recipients and clinics before, during and after their donations. These findings have implications for clinical practice and care, offering insight into how best to support donors prior and subsequent to donation.

Embryo donation: Counselling practice issues and dilemmas within the context of identity-release donor programmes.

Embryo donation (ED) involves the donation of surplus embryos post family formation to others in need. Commensurate with Australian and New Zealand legislation and policy, ED is practiced as an identity-release programme shaped by four paramount principles. These include: the need to consider the longitudinal health and well-being of donor-conceived children born from assisted reproductive technologies (ART); recognition that offspring should be made aware of and be able to access information about their genetic origins; awareness that the short and long-term health and psychological welfare of other stakeholders (i.e., recipients and donors) should be ensured; and finally, that all donations are altruistic. Whilst embedded in ART legislation or professional guidelines, how these principles are operationalized through counselling in both countries remains variable. In this paper, we draw upon Australian and New Zealand research, legislation and policy shaping the counselling milieu. We highlight some of the key clinical issues that counsellors need to explore with participants of an ED arrangement and the implications of these as they apply to dilemmas within counselling practice such as counsellor roles and responsibilities.

Identity disclosure between donor families and organ transplant recipients: an integrative review of the international literature.

Anonymity of deceased organ donation is a legal requirement in many international jurisdictions where legislation prohibits health professionals from disclosing identifiable information about donors, recipients or their families. Written correspondence between donor families and transplant recipients that is coordinated by healthcare professionals must remain anonymous. Internationally, an increasing number of donor families and transplant recipients have advocated for law reform and policy amendment to enable the exchange of identifiable written correspondence and/or face-to-face meetings. This paper aims to synthesise and critically evaluate published, peer-reviewed literature on the perceptions, benefits and challenges of identifiable communication or anonymity between donor families and organ transplant recipients in the international context. Analysis of the findings revealed two major themes: (1) views held by donor families, transplant recipients and healthcare professionals towards identity disclosure in the context of organ donation are diverse across and within groups (2) there are benefits and burdens associated with connecting donor families and transplant recipients through written correspondence. Less is known about the impact of face-to-face meetings between donor families and transplant recipients. However, what is known is that for some donor families, meeting with the transplant recipient(s) may provide a range of positive emotions.

Moderating Role of Religiosity and the Determinants to Attitude, Willingness to Donate and Willingness to Communicate Posthumous Organ Donation Decisions among University Students in Pakistan.

Organ transplantation is considered an alternative treatment to save lives or to improve the quality of life and is a successful method for the treatment of patients with end-stage organ diseases. The main objective of the current study was to explore the determinants of the attitudes and willingness to communicate the posthumous organ donation decisions to the families. Questionnaires were used to test the hypothesized relationships. The results confirmed altruism, knowledge, empathy, and self-identity as the antecedents to attitude. We also found perceived behavioral control, moral norms, and attitude as significant antecedents to the willingness to donate organs after death. The results of the study also indicated that those who were willing to sign the donor card were also willing to communicate their decision to their families. Religiosity moderated the relationship between willingness to donate and signing the donor card, and it strengthened the relationship. The findings of this study would provide insight into the factors which can influence posthumous organ donation among university students in Pakistan.

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.

Determinants of Organ Donation Registration Among University Students in Hong Kong.

The present study explored the determinants of registration to facilitate the promotion of posthumous organ donation based on the theory of reasoned actions. A total of 211 university students participated in the study. Logistic regression, multiple regressions, and path analysis were conducted. The logistic regression model correctly predicted nearly 80% of registration status, and a good fit model of registration for posthumous organ donation (MRPOD) was proposed. Findings suggested that affective attitude, subjective norm of family, self-rated knowledge, distance from death, and age were predictors of registration. Worries about organ removal and postmortem mutilation anxiety were also mediated through bodily integrity, which had an indirect effect on the registration through affective attitude. Policymakers are suggested to address the negative emotions associated with challenges towards bodily integrity, encourage parents to initiate discussions with children, instill correct knowledge of brain death, and intervene the bystander effect on organ donation.

Donor-centred care: the facilitating and constraining factors experienced by gamete donors in a public bank.

The provision of care that is responsive to the preferences, needs and values of gamete donors is key to improving their recruitment and ensuring the functioning of gamete banks. This qualitative study aimed to explore gamete donors' experiences about the facilitating and constraining human and system factors to donor-centred healthcare delivery in gamete banks. It is based on 20 semi-structured interviews with oocyte and sperm donors, recruited at the Portuguese Public Bank of Gametes, conducted from November 2017 to February 2019. Deductive content analysis was performed using the software NVivo12, following the patient-centred infertility care model. Interviewees identified facilitating factors mostly related with the human dimension of care (i.e. careful and available attitude and behaviours of health professionals, as well as their good communication skills and emotional support). Constraining factors were predominantly identified at the system level (i.e. insufficient information provision, poor coordination, and integration). Lack of privacy emerged simultaneously as a human and a system constraining factor (i.e. physical discomfort during medical-technical acts or gamete collection). There is room for improving clinical practice and the organisation of healthcare services within a context where the competence and attitude of, and relationship with, the staff are highly valued.

The bereavement experiences of families of potential organ donors: a qualitative longitudinal case study illuminating opportunities for family care.

OBJECTIVES: To illuminate opportunities for care in the context of deceased organ donation by exploring pre-existing family and healthcare professional characteristics, in-hospital experiences, and ongoing adjustment through the lenses of grief theory, systems theory, meaning-making, narrative, and organ donation literature. METHOD: Qualitative longitudinal case studies explored individual and family change in five Australian families who had consented to Donation after Circulatory Determination of Death at a single centre. Participants attended semi-structured interviews at four, eight, and twelve months after the death. FINDINGS: Family values, pre-existing relationships, and in-hospital experiences influenced first responses to their changed lives, understanding of the patient's death, and ongoing family adjustment. Novel behaviour that was conguent with family values was required at the hospital, especially if the patient had previously played a key role in family decision-making. This behaviour and emerging interactional patterns were drawn into family life over the first year of their bereavement. RECOMMENDATIONS: Training that includes lenses introduced in this study will enable healthcare professionals to confidently respond to individual and family psychosocial needs. CONCLUSION: The lenses of grief theory and systems thinking highlight opportunities for care tailored to the unique in-hospital context and needs that emerge in the months that follow.