Should minors and young adults qualify as potential live kidney donors? The views of international transplant professionals.

Although live kidney donation (LD) has become an increasingly common procedure, European and US transplant centres disagree as to whether minors and young adults should qualify as donor candidates. Therefore, we aimed to better understand the attitudes and viewpoints of transplant professionals. We conducted fourteen in-depth interviews with a purposive sample of international transplant professionals from various professional backgrounds. Data analysis was guided by QUAGOL, a systematic approach based on the constant-comparative method. Professionals expressed a cautionary view, worrying about the uncertain long-term medical and psychosocial consequences of LD at a young age. They also worried that young individuals' decisions are more likely to be influenced by their psychosocial developmental stage or family pressure. As these concerns were more significant for minors as compared to young adults, minors were deemed ineligible for LD except for in highly exceptional circumstances. Professionals' attitudes were also influenced by the expected benefits for the recipient and the availability of therapeutic alternatives, as well as the strength of the donor-recipient relationship. More prospective research on the long-term medical and psychological outcomes in young adult donors is likely to shed more light on the acceptability of LD by adolescents and young adults.

Nurses' experiences and reactions towards intimacy and sexuality expressions by nursing home residents: A qualitative study.

OBJECTIVES: To better understand how nurses experience and react to intimate and sexual expressions of nursing home residents. BACKGROUND: Although many nursing home residents continue to desire intimacy and sexual expression, they commonly perceive negative attitudes of nursing staff towards them as a major barrier to their sexual well-being. To eliminate this barrier, it is crucial to gain a more in-depth understanding of nurses' personal experiences and reactions towards intimacy and sexuality in aged care. DESIGN: Our study used a qualitative design, rooted in grounded theory. METHODS: Semi-structured interviews with 15 nurses between 34 and 59 years of age were conducted. Participating nurses were recruited from seven different nursing homes in Flanders, Belgium. We used the Qualitative Analysis Guide of Leuven (QUAGOL) for data analysis. We followed the COREQ guidelines to ensure rigour in our study. RESULTS: Nurses experienced and dealt with intimate and sexual expressions of residents in an individual way, which was focused on setting and respecting their own sexual boundaries and those of residents and family members. Depending on their comfort level with residents' expressions, nurses responded in three ways: active facilitation, tolerance and termination. Nurses' responses depended on contextual factors, including their personal experiences with sexuality, the nature of their relationship with the residents involved, the presence of dementia and the organisational culture of the facility. CONCLUSIONS: Nurses face a wide range of experiences and emotions when confronted with residents' expressions of sexuality and intimacy. A supportive approach is needed to guide nurses in dealing with these highly sensitive situations. This approach can be promoted at the institutional level through continuous educational programmes. RELEVANCE TO CLINICAL PRACTICE: This study advocates a contextual and interpretative ethical approach to sexuality in older adults, taking as starting point nurses' own vulnerability and that of residents and relatives.

Legal approaches regarding health-care decisions involving minors: implications for next-generation sequencing.

The development of next-generation sequencing (NGS) technologies are revolutionizing medical practice, facilitating more accurate, sophisticated and cost-effective genetic testing. NGS is already being implemented in the clinic assisting diagnosis and management of disorders with a strong heritable component. Although considerable attention has been paid to issues regarding return of incidental or secondary findings, matters of consent are less well explored. This is particularly important for the use of NGS in minors. Recent guidelines addressing genomic testing and screening of children and adolescents have suggested that as 'young children' lack decision-making capacity, decisions about testing must be conducted by a surrogate, namely their parents. This prompts consideration of the age at which minors can provide lawful consent to health-care interventions, and consequently NGS performed for diagnostic purposes. Here, we describe the existing legal approaches regarding the rights of minors to consent to health-care interventions, including how laws in the 28 Member States of the European Union and in Canada consider competent minors, and then apply this to the context of NGS. There is considerable variation in the rights afforded to minors across countries. Many legal systems determine that minors would be allowed, or may even be required, to make decisions about interventions such as NGS. However, minors are often considered as one single homogeneous population who always require parental consent, rather than recognizing there are different categories of 'minors' and that capacity to consent or to be involved in discussions and decision-making process is a spectrum rather than a hurdle.

Psychosocial impact of pediatric living-donor kidney and liver transplantation on recipients, donors, and the family: a systematic review.

Living-donor kidney and liver transplantation intend to improve pediatric recipients' psychosocial well-being, but psychosocial impact in recipients strongly depends upon the impact on the donor and the quality of family relations. We systematically reviewed quantitative and qualitative studies addressing the psychosocial impact of pediatric living-donor kidney and liver transplantation in recipients, donors, and the family. In accordance with the PRISMA guidelines, we systematically searched the databases Medline, Web of Knowledge, Cinahl, Embase, ERIC, and Google Scholar. We identified 23 studies that satisfied our inclusion criteria. Recipients had improved coping skills and satisfactory peer relationships, but also reported anxiety and depressive symptoms, worried about the future, and had a negative body image. Similarly, donors experienced increased self-esteem, empowerment, and community awareness, but also complained of postoperative pain and a lack of emotional support. With respect to family impact, transplantation generated a special bond between the donor and the recipient, characterized by gratitude and admiration, but also raised new expectations concerning the recipient's lifestyle. As psychological problems in recipients were sometimes induced by feelings of guilt and indebtedness toward the donor, we recommend more research on how gift exchange dynamics function within donor-recipient relationships, enrolling donors and recipients within the same study.

Could minors be living kidney donors? A systematic review of guidelines, position papers and reports.

The purpose of this study is to systematically review guidelines, position papers, and reports on living kidney donation by minors. We systematically searched the databases such as Medline, Embase, ISI Web of knowledge, Google scholar as well as the websites of various bioethics committees, transplant organizations and societies. Guidelines were included if they provided recommendations for or against living kidney donation by minors. Data were analyzed using qualitative content analysis. We included 39 documents in this study. Twenty seven of these endorse an absolute prohibition of living kidney donation by minors, because of concerns regarding the decision-making capacity of minors, the impartiality of parental authorization, the best interests of the minor, and the necessity of the donation. Twelve guidelines, however, would exceptionally allow living kidney donation by minors, provided that adequate safeguards are put in place, including an assessment of the minor's autonomy and maturity, authorization by an independent body, assuring that the anticipated psychosocial benefits outweigh the medical and psychosocial risks for the donor and the restriction to situations of last resort. A more adequate medical and psychosocial follow-up of living kidney donors may likely contribute to a more unified approach towards living kidney donation by minors.

Should minors be considered as potential living liver donors?

For many patients, living donor liver transplantation represents their only hope of receiving a lifesaving graft. In certain (albeit rare) cases, a minor will be the only suitable donor. Living liver donation by minors has been reported in several countries. In the academic literature and professional guidelines, little attention is paid to the development of an ethical framework for this practice. The focus is frequently limited to the donation of regenerative tissues and kidneys. However, liver donation differs in important respects because of the increased medical risks and the lack of substitute therapies. Therefore, in this article, we assess whether living liver donation by minors is ethically appropriate. We argue that living liver donation by minors is justifiable only if minors possess the capacity to consent to donation or if the procedure is in their best interests. Although minors may possess adult-like levels of cognitive maturity, they lack sufficient psychosocial maturity to give valid consent to donation. In addition, living liver donation is generally not in a minor's best interests. With respect to the latter, the potential psychological benefits that a minor may experience as a result of living liver donation are insufficiently empirically supported and are unlikely to outweigh the short- and long-term medical and psychological risks. Therefore, we conclude that minors should not be considered as potential living liver donors.

Why do participants enroll in population biobank studies? A systematic literature review.

Therapeutic misconception has been extensively studied and addressed within clinical trials. An equivalent in the genetic research context has been identified as diagnostic misconception. There is not much data on this phenomenon in population-based biobank studies. Since misconceptions may generate undue motives to enroll, the authors aimed at reviewing studies addressing the reasons to participate in biobank studies. The main databases were searched using relevant keywords. Studies were included if peer-reviewed, in English and describing the reasons to enroll was provided by actual and apparently healthy donors. Although the 13 studies retrieved were heterogeneous, a scheme summarizing the main aspects involved in the decision-making process was developed. Expectation of personal benefit through health-related information was found in eight studies. Three of them discussed whether this expectation could be considered a form of therapeutic misconception. The magnitude of this phenomenon is an important ethical concern and ought to be further studied.