The experiences of patients, caregivers and donors on transplant journeys in Canada: A convergent parallel mixed methods study.

INTRODUCTION: The organ donation and transplantation (ODT) system in Canada is complex and can be challenging for individuals to navigate. We thus aimed to illuminate the experiences of individuals on transplant journeys using a patient-oriented convergent parallel mixed-methods approach. METHODS: We captured data on adult patients, living donors, and caregivers on transplant journeys across Canada through an online survey (n = 935) and focus groups (n = 21). The survey was comprised of 48 questions about the individuals' experiences with the living donation and transplantation system, which were analyzed descriptively. Qualitative data were analyzed using an inductive conventional content analysis approach. RESULTS: Most participants were female (70.1%), English speaking (92.6%) and White (87.8%). Participants' experiences were represented across six key themes: holistic person-centred care, accountable care, collective impact, navigating uncertainty, connection and advocacy. Quantitative and qualitative data were integrated to identify five opportunities to improve the organ donation and transplantation system in Canada: enhancing mental health support, establishing formal peer support programmes, improving continuity of care, improving knowledge acquisition, and expanding resources and support. CONCLUSION: It is imperative that the ODT system commits to asking, listening, and learning from individuals on transplant journeys and to provide them opportunities to help improve it.

Living-Donor Liver Transplant: An Analysis of Postoperative Outcome and Health-Related Quality of Life in Liver Donors.

OBJECTIVES: Living-donor liver transplant represents an established alternative to deceased-donor liver transplant. The procedure is considered safe for donors; however, concerns about the donors' health-related quality of life and health status have not been fully addressed. Here, we aimed to assess the health-related quality of life and postoperative and 1-year clinical outcomes in living liver transplant donors. MATERIALS AND METHODS: All patients undergoing liver resection for adult-to-adult living-donor liver transplant at our center between December 1999 and March 2013 were evaluated retrospectively. Health-related quality of life was evaluated in a second assessment through written health-related quality of life questionnaires (the Short Form 36 assessment tool) sent to all patients who underwent liver resection for living-donor liver transplant between 1989 and 2012. RESULTS: We identified 104 patients who underwent liver resection for living-donor liver donation between December 1999 and March 2013. Postoperative morbidity was 35.9%, with 56.8% of patients having minor complications. No postoperative, 30-day, or 90-day mortality was evident. At year 1 after transplant, 30 patients (28.8%) had (ongoing) complications, of which 80% were considered minor according to Clavien-Dindo classification. Regarding health-related quality of life, liver donors were characterized as having significantly higher scores in the general health perception component in the Short Form 36 assessment tool (P < .001). We found no significant results in other assessment components (all P > .05). CONCLUSIONS: Liver donors are characterized by an excellent health-related quality of life that is comparable to the general population. Because some donors tend to have concerns regarding their employment status after the procedure, a comprehensive and critical evaluation of potential donors is needed.

Spirituality and religiosity of non-directed (altruistic) living kidney donors.

AIMS AND OBJECTIVES: To describe the spirituality and religiosity of 30 non-directed (altruistic) living kidney donors in the USA and explore how they may have affected their motivations to donate and donation process experiences. BACKGROUND: The rise in non-directed donors and their ability to initiate kidney chains offer a novel approach to help alleviate the overextended kidney transplant wait list in the USA. However, little is known about the non-directed donors' motivations, characteristics and experiences. DESIGN: We conducted a qualitative-dominant study and used a grounded theory approach to analyse data. METHODS: Thirty participants completed in-depth interviews between April 2013-April 2015. Three analysts independently read and coded interview transcripts. Grounded theory techniques were used to develop descriptive categories and identify topics related to the non-directed donors donation experience. RESULTS: Sixteen of the 30 non-directed donorss discussed the topic of spirituality and religiosity when describing their donation experiences, regardless of whether they were actively practising a religion at the time of donation. Specifically, three themes were identified within spirituality and religiosity: motivation to donate, support in the process, and justification of their donation decisions postdonation. CONCLUSIONS: Findings from this study are the first to describe how spirituality and religiosity influenced the experiences of U.S. non-directed donorss and may help improve non-directed donors educational resources for future spiritual or religious non-directed donors, and the overall non-directed donors donation experience in efforts to increase the living donor pool. RELEVANCE TO CLINICAL PRACTICE: Spirituality and religiosity are often overlooked yet potentially influential factors in Western medicine, as demonstrated through the experiences of Jehovah's Witnesses and their religious restrictions while undergoing surgery and the beliefs of Christian Scientists against taking medications and receiving medical procedures. Understanding needs of non-directed donors specifically with spirituality and religiosity can better position kidney transplant centres and teams to improve predonation screening of non-directed donor candidates and provide support services during the donation process.

Moon phases and moon signs do not influence morbidity, mortality and long-term survival, after living donor kidney transplantation.

BACKGROUND: Approximately 11% of the German population are convinced that certain moon phases and moon signs may impact their health and the onset and clinical course of diseases. Before elective surgery, a considerable number of patients look to optimize the timing of the procedure based on the lunar cycle. Especially patients awaiting living donor kidney transplantation (LDKT) commonly look for an adjustment of the date of transplantation according to the moon calendar. This study therefore investigated the perioperative and long-term outcome of LDKT dependent on moon phases and zodiac signs. METHODS: Patient data were prospectively collected in a continuously updated kidney transplant database. Two hundred and seventy-eight consecutive patients who underwent LDKT between 1994 and December 2009 were selected for the study and retrospectively assigned to the four moon phases (new-moon, waxing-moon, full-moon, and waning-moon) and the corresponding zodiac sign (moon sign Libra), based on the date of transplantation. Preexisting comorbidities, perioperative mortality, surgical outcome, and long-term survival data were analyzed. RESULTS: Of all LDKT procedures, 11.9, 39.9, 11.5, and 36.5% were performed during the new, waxing, full, and waning moon, respectively, and 6.2% during the moon sign Libra, which is believed to interfere with renal surgery. Survival rates at 1, 5, and 10 years after transplantation were 98.9, 92, and 88.7% (patient survival) and 97.4, 91.6, and 80.6% (graft survival) without any differences between all groups of lunar phases and moon signs. Overall perioperative complications and early graft loss occurred in 21.2 and 1.4%, without statistical difference (p > 0.05) between groups. CONCLUSION: Moon phases and the moon sign Libra had no impact on early and long-term outcome measures following LDKT in our study. Thus, concerns of patients awaiting LDKT regarding the ideal time of surgery can be allayed, and surgery may be scheduled independently of the lunar phases.

When Opportunity Knocks Twice: Dual Living Kidney Donation, Autonomy and the Public Interest.

Living kidney transplantation offers the best treatment in terms of life-expectancy and quality of life for those with end-stage renal disease. The long-term risks of living donor nephrectomy, although real, are very small, with evidence of good medium-term outcomes. Who should be entitled to donate, and in which circumstances, is nevertheless a live question. We explore the ethical dimensions of a request by an individual to donate both of their kidneys during life: 'dual living kidney donation'. Our ethical analysis is tethered to a hypothetical case study in which a father asks to donate a kidney to each of his twin boys. We explore the autonomy of the protagonists, alongside different dimensions of the public interest, such as the need to protect not only the recipients, but also the donor and even the wider community. Whilst acknowledging objections to 'dual-donation', not least by reference to the harms that the donor might be expected to endure, we suggest there is a prima facie case for permitting this, provided that both donor and recipients are willing and that due attention is paid to such considerations as the autonomy and welfare of all parties, as well as to the wider ramifications of acting on such a request. We argue for broader interpretations of the concepts of autonomy and welfare, recognizing the importance of relationships and the relevance of more than merely physical well-being. Equipped with such a holistic assessment, we suggest there is a prima facie case for allowing 'dual living kidney donation'.

Decisions to register for the National Marrow Donor Program: rational vs emotional appeals.

Little research has examined how the content of health communications regarding the need for BM and stem cell donation affects the intentions and attitudes of potential National Marrow Donor Program (NMDP) donors. This study used an experimental design to test the hypothesis that an emotional appeal (EA) to potential donors would lead to higher rates of NMDP registration than a rational appeal (RA). Participants were randomly assigned to receive either a RA or an EA and then asked if they would (1) register with the NMDP and (2) talk with family members about NMDP registration. A total of 85% of individuals receiving the EA agreed to register for the NMDP, whereas only 49% of the participants receiving the RA agreed to register. The EA (72%) and RA (54%) groups did not differ significantly in their reported willingness to talk with family members about NMDP registration. However, multivariate logistic regression analyses indicated that the EA group endorsed significantly greater willingness to engage in both outcomes. Results suggest that an EA was more effective in motivating participants, but other sociodemographic factors were also associated with decisions about NMDP registration. EA may provide a useful and cost-effective method for increasing NMDP registration.

Psychological conflicts between relatives during the long-term course after successful living organ donation.

The German transplantation law prefers living organ donation between close relatives and spouses, which is assumed to guarantee unequivocal altruistic motivation. Since 2001, 68 recipient-donor-pairs, who aspired to have a renal or liver transplantation, underwent a systematic psychosomatic evaluation. Meanwhile, 43 transplantations were performed including 34 renal and 9 liver cases. Seventeen recipient-donor-pairs were readministered evaluations by the department of psychosomatic medicine after 1 to 6 years after transplantation for long-term follow-up. In 10 cases of medically successful transplantation, we identified severe conflicts between donor, recipient, and next-of-kin. Major conflicts are presented by case vignettes regarding deterioration of a previously conflicted marriage, noncompliance of the recipient due to a marital stalemate, and family conflict revolving around refusal to donate. Based on these findings, concise assessments of donor-recipient-pairs are recommended regardless of family relationships. Particular attention must be paid to signs of conflict both before and after transplantation.

Gift exchange and organ donation: donor and recipient experiences of live related kidney transplantation.

BACKGROUND: Live transplantation presents many stressors for donors and recipients, yet a holistic understanding of the process, from both perspectives, is limited. Gift exchange is a theory governed by the principles of giving, receiving and reciprocating and has many similarities with the process of organ transplantation. It may therefore provide a framework for understanding donor and recipient experiences of live kidney transplantation. However, the relevance of this theory to live kidney transplantation has not previously been properly explored. OBJECTIVES: To gain a theoretical understanding of the live transplantation experience from the perspectives of donors and recipients. DESIGN: A phenomenological, longitudinal study. PARTICIPANTS: All donors and their recipients undergoing live kidney transplantation in a regional renal transplant centre in South-West England (between July 2003 and February 2004) were invited to participate in this study. Of this cohort, 11 families (n=55%) volunteered to participate. METHODS: Data were collected through a series of 3 recorded, semi-structured interviews with donors and recipients. Interviews were conducted pre transplant and at 3 and 10 months post transplant. Data were analysed using a process of thematic content analysis. Findings were also considered within a theoretical framework of gift exchange. RESULTS: All donors initially made an instantaneous, voluntary decision to donate and found the decision relatively easy to make. In contrast, recipients found accepting the donors' offer arduous, because of concern for their wellbeing. They were only able to accept the transplant after discussing the matter with their donor and establishing that it was something that they wanted to do. Recipients' lives were transformed by a successful transplant and they were subsequently very grateful to the donors for donating. Donors derived immense personal satisfaction from this outcome and it helped to confirm to them that what they had done had been worthwhile. The transplant did not have a detrimental effect on donor-recipient relationships. CONCLUSIONS: The concept of gift exchange provides a logical explanation of donor and recipients experiences in this study, particularly in relation to factors that influence giving, receiving and reciprocating. This understanding should help health professionals assist donors, recipients and their families throughout this process.

An interruption in family life: siblings' lived experience as they transition through the pediatric bone marrow transplant trajectory.

PURPOSE/OBJECTIVES: To arrive at an understanding of the lived experience of healthy donor and nondonor siblings as they transition through the bone marrow transplantation (BMT) trajectory. RESEARCH APPROACH: Qualitative study guided by the philosophy of hermeneutic phenomenology. SETTING: Participants' homes or the investigator's university or hospital office. PARTICIPANTS: Eight siblings of pediatric BMT recipients were recruited based on their knowledge of the experience of transitioning through the BMT trajectory. METHODOLOGIC APPROACH: Data were collected by semistructured, open-ended interviews; demographic forms; and field notes during a period of six months. Data analysis occurred concurrently with data collection. Thematic statements were isolated using Van Manen's selective highlighting approach. Interviews were reviewed repeatedly for significant statements. MAIN RESEARCH VARIABLE: Siblings' lived experience of the BMT trajectory. FINDINGS: Interruption in family life emerged as the essence of siblings' lived experience. Four themes supported this essence: life goes on, feeling more or less a part of a family, faith in God that things will be okay, and feelings around families. CONCLUSIONS: Hermeneutic phenomenologic research increases understanding of what being a sibling of a pediatric BMT recipient means. This study is one of the few that have afforded siblings the opportunity to speak about what is important to them. INTERPRETATION: Findings from this study provide insight into how siblings live and cope throughout the BMT trajectory and will guide nurses as they seek to provide more sensitive and comprehensive care.

Bone marrow donation: factors influencing intentions in African Americans.

PURPOSE/OBJECTIVES: To identify factors influencing the intentions of African Americans to donate or not to donate bone marrow. DESIGN: Exploratory, descriptive. SETTING: Participants were recruited from three churches, four public housing developments, and a university teaching hospital-all in the Philadelphia, PA, area. SAMPLE: African American adults aged 18-60 years and able to read, write, and speak English. METHODS: Focus groups were conducted for the purpose of instrument development. A factor analysis was conducted on questionnaire data. A multiple regression was conducted of the demographic variables and the factors that contributed to behavioral intention to donate or not to donate bone marrow. MAIN RESEARCH VARIABLES: Attitudes, subjective norms, perceived behavioral control, and behavioral intentions regarding bone marrow donation. FINDINGS: "Fear or not trusting," "external influences," and "concerned about resources" correlated significantly with the intention not to donate bone marrow. Helping others, approval of people, and value of knowledge correlated significantly with the intention to donate bone marrow. CONCLUSIONS: Greater attention must be paid to increasing donations and improving the critical need for bone marrow donors. Patient education programs should be expanded to improve African Americans' knowledge of the importance of bone marrow donation, including the process, associated costs, and resources available to donors. IMPLICATIONS FOR NURSING: Nurses--irrespective of practice areas--are key contributors to increase the rate of bone marrow donation, particularly among African Americans.

The expectancies of living kidney donors: do they differ as a function of relational status and gender?

BACKGROUND: While two-thirds of the living kidney donors continue to be genetically related to the recipient, there has been a 300% increase in unrelated living donors over the last 10 years. Also, women continue to represent more than half of all the living kidney donors. This study examined whether donor expectancies varied as a function of relational status or gender. METHODS: 362 kidney donor candidates (232 related, 130 unrelated) completed the Living Donation Expectancies Questionnaire (LDEQ). A 2 (relational status: related or unrelated) x 2 (gender: male or female) multivariate analysis of variance was conducted to examine main and interaction effects across the six domains of the LDEQ: interpersonal benefit (IB), personal growth (PG), spiritual benefit (SB), quid pro quo (QPQ), health consequences (HC) and miscellaneous consequences (MC). RESULTS: The highest expectancies were for PG (54.1%) and IB (29.8%), followed by expectations of MC (18.2%), SB (16.9%), HC (14.4%), and QPQ (4.4%). Multivariate analyses showed a relational main effect [F = 4.18, P = 0.02] and a gender main effect [F = 5.09, P = 0.01]. Subsequent univariate analyses showed significant effects (P<0.05) for IB (related>unrelated), QPQ (men>women), HC (unrelated>related, men > women) and MC (unrelated > related). CONCLUSION: Overall, donor candidate expectancies appear to be realistic in light of previous findings of donor benefit. However, some living donor expectancies may vary as a function of donor relational status and gender. It may be important to assess and appropriately address both positive and negative expectancies at the time of donor evaluation. The LDEQ may be a useful clinical tool for assessing such expectancies.

The essence of living parental liver donation--donors' lived experiences of donation to their children.

The use of living parental liver donors will continue and probably increase because of lack of cadaveric livers for paediatric transplantation and the excellent graft survival of parental livers. Therefore, it is important for the health care professionals involved in living parental liver donation to understand the experience of being a liver donor. The aim of this study was to investigate the expressed deeper feelings of parents who donated a part of their liver to their own child. The study took the form of in-depth interviews with 11 donors. All donors were biological parents of the recipient, nine fathers and two mothers. The interpretive phenomenology method was used, and interpretive analysis was carried out in three interrelated processes in line with Benner. Data collection was guided by the researcher's preliminary understanding of the donor experience from being involved in the surgery and care of the donors as well as the paediatric recipients. However, the research question was approached from the perspective of holistic care for the donor. In this study, the essence of living parental liver donation was found to be the struggle for holistic confirmation. There were three categories leading to this central theme; the total lack of choice, facing the fear of death and the transition from health to illness. There was total agreement among the respondents that there is no choice when it comes to the question of donation. The findings in this study stress the importance of organizing the parental liver donation programme with as much focus on the donor as on the child. Based on the results of this study, several clinical implications are suggested for the formation of guidelines for living parental liver donation.

[Psychosomatic medicine as a scientific approach for the 21st century]. / Psychosomatische Medizin--Eine Wissenschaft für das 21. Jahrhundert.

OBJECTIVES: Subject of the article is the future of psychosomatic medicine as a science in the 21st century. METHODS: The state of the art is reviewed from the perspective of philosophy of science and sociology. The subjects of psychosomatic research are dealt with as well as theory and research methodology. RESULTS: Psychosomatic medicine will be influenced by a decrease in concrete interpersonal interaction and an increase in interaction directed by electronic media of communication. Holistic theories will be replaced by a variety of consistent and interdisciplinary informed middle range theories. And, last but not least, naive research concepts of the subjects of psychosomatic research will be supplemented by more complex concepts due to the multiplicity of qualitative and quantitative aspects of psychosomatic phenomena. DISCUSSION: The theoretical approach developed in this article will be illustrated by concrete examples from some research projects, in particular a project on the psychology of donors in living donor liver transplantation.