Gift Discourse in Transplant and Its Implications in Anonymous Living Liver Donation.

The Gift of Life metaphor is prevalent in pro-donation dialogue, aiming to promote transplant programs and conceptualize the act of organ donation. To obtain a better understanding of living donor perceptions on the term Gift of Life, we analyzed thematic views presented by anonymous living donors (ALLDs). Twenty-six ALLDs completed a semi-structured qualitative interview consisting of questions regarding their motivations, experiences, and perceptions on donation. The following 5 major themes relating to the Gift of Life terminology were elucidated: (1) Complete agreement with the term and its relevance to donation. (2) Their donation did not represent a Gift of Life. (3) The term was too grandiose. (4)A belief that the term has more meaning for the recipient rather than donor. (5 )That the "gift" goes both ways, with the donor also benefiting from the experience.

Anonymity: What does it mean and why is it important to anonymous living liver donors?

Anonymous living organ donation has recently become more common in select transplantation programs, with donors voluntarily offering a kidney or a lobe of their liver to those in need. These anonymous donations may be directed to a specific recipient or nondirected, and anonymity may be one way or reciprocal. Given their unique situation, we interviewed a cohort of anonymous living liver donors and explored their opinions surrounding anonymity and its implications in living liver donation. A total of 26 anonymous donors completed a semistructured qualitative interview consisting of questions regarding their experiences as a living liver donor. The interviews were audio-recorded, transcribed, and analyzed for common themes, specifically those pertaining to the donor's perceptions and experiences with anonymity. Five main themes related to anonymity were identified: (1) the moral importance of an unencumbered gift, (2) wanting internal satisfaction rather than seeking external accolades, (3) anonymity as a protection against potential negative outcomes in the recipient, (4) feelings of ambivalence toward meeting the recipient, and (5) concerns about negative perceptions among their own friends and family. These insights into the range of donors' attitudes toward anonymity will help improve awareness and provide the best possible mental and physical care for the anonymous donor.

Growth through adversity: posttraumatic growth in anonymous living liver donors.

PURPOSE: Post-traumatic growth (PTG) is positive change that occurs after struggling with challenging life crises. Research on PTG has typically been limited to oncology populations, first-responders, and individuals in warzones. We report the experience of PTG amongst a sample of 26 anonymous live liver donors. METHODS: Anonymous donors were those with no biological connection or prior relationship with recipients. Twenty-six participants participated in a semi-structured qualitative interview examining their experience with, and outcomes of donation. Interview transcripts were analyzed for themes about PTG using the constant comparison method. RESULTS: While some donors indicated that donation had little lasting impact on their life, most cited significant personal and interpersonal changes resulting from the experience. The most common positive changes included deepened bonds with others, appreciation for personal strength, clearer life direction, legacy-building, and a connection to the transplant community. CONCLUSION: Despite the short-term physical trauma of living donor surgery, the act of anonymous donation appeared to be a catalyst for positive long-term psychological growth. These findings help to bolster the ethical argument in favour of anonymous donation.IMPLICATIONS FOR REHABILITATIONThere is a shortage of organ donors for recipients in need, and anonymous living liver donors can successfully reduce wait times and mortality rates for those on wait lists.There are some questions about the ethics of anonymous donation due to possible negative physical and psychological effects of donation surgery on donors.In a qualitative study, this study shows that donors ascribe significant meaning to, and derive many psychological benefits from, their donation experience.These findings provide insights about how to best support anonymous donors through and after their donation experience.

Anonymous living liver donor perspectives on the role of family in their donation experience.

Anonymous living organ donation is an understudied but rapidly expanding sector in organ transplantation, in which donors choose to donate anonymously to a recipient in need. The family members and close support network of living donors often play a crucial role in the donation process, and their influence likely has a large impact on the decision to donate as well as the donor's physical and psychosocial state. However, there is limited data examining the impact donor families have on the anonymous donor, and in turn, the impact donation has on donors' families. To assess this, we analyzed a semi-structured qualitative interview on living donor experiences with 26 anonymous living liver donors for common themes concerning donor families. Responses surrounding donor families were grouped into three major categories: (1) family reactions to donation, ranging from (a) pride/support, (b) fear/worry, and (c) jealousy/anger; (2) the impact of donation on donor-family relationships, including (a) positive impacts, (b) negative impacts, (c) a positive ripple effect; (3) gaps in institutional support for donor families. This study provides unique information on anonymous living liver donor perceptions related to their families and will help improve existing programs to accommodate donor family needs and cater to donor relationships.

The Meaning Behind the Scar: Anonymous Live Liver Donors' Perceptions of Their Surgical Scars.

BACKGROUND: Scarring can greatly impact quality of life for individuals (ie, causing depression posttraumatic stress disorder and body image issues). Those who wish to be anonymous live liver donors are warned of the potential negative psychological impacts associated with the large scar left from liver donation surgery. Given the unique degree of autonomy that these patients have over their surgery, we explore whether a sample of 26 anonymous live liver donors experience a unique relationship with their scar. METHODS: Anonymous donors participated in a semistructured qualitative interview examining their experience with donation. Interviews were audio-recorded, transcribed, and analyzed using the constant comparison method for themes pertaining, to participants' perception of their scar. RESULTS: Five main themes were identified-a marker of satisfaction about the donation experience, a physical reminder of donation, a trigger for recipient-related thoughts, an awareness tool, and a potential threat to anonymity. Donors did not voice any body image or cosmetic concerns due to their scars. Instead, discussions about the negative aspects of scarring centered around the identifying nature of their scar. CONCLUSIONS: These findings help underscore the distinctiveness of anonymous living liver donors as a patient population. Preparing anonymous living liver donors for different types of cosmetic issues relating to their scar (ie, as a possible threat to their desired anonymity) may be more appropriate than preparing them in the same way as other donor populations.

Donor outcomes in anonymous live liver donation.

BACKGROUND & AIMS: Death rates on liver transplant waiting lists range from 5%-25%. Herein, we report a unique experience with 50 anonymous individuals who volunteered to address this gap by offering to donate part of their liver to a recipient with whom they had no biological connection or prior relationship, so called anonymous live liver donation (A-LLD). METHODS: Candidates were screened to confirm excellent physical, mental, social, and financial health. Demographics and surgical outcomes were analyzed. Qualitative interviews after donation examined motivation and experiences. Validated self-reported questionnaires assessed personality traits and psychological impact. RESULTS: A total of 50 A-LLD liver transplants were performed between 2005 and 2017. Most donors had a university education, a middle-class income, and a history of prior altruism. Half were women. Median age was 38.5 years (range 20-59). Thirty-three (70%) learned about this opportunity through public or social media. Saving a life, helping others, generativity, and reciprocity for past generosity were motivators. Social, financial, healthcare, and legal support in Canada were identified as facilitators. A-LLD identified most with the personality traits of agreeableness and conscientiousness. The median hospital stay was 6 days. One donor experienced a Dindo-Clavien Grade 3 complication that completely resolved. One-year recipient survival was 91% in 22 adults and 97% in 28 children. No A-LLD reported regretting their decision. CONCLUSIONS: This is the first and only report of the characteristics, motivations and facilitators of A-LLD in a large cohort. With rigorous protocols, outcomes are excellent. A-LLD has significant potential to reduce the gap between transplant organ demand and availability. LAY SUMMARY: We report a unique experience with 50 living donors who volunteered to donate to a recipient with whom they had no biological connection or prior relationship (anonymous living donors). This report is the first to discuss motivations, strategies and facilitators that may mitigate physical, social and ethical risk factors in this patient population. With rigorous protocols, anonymous liver donation and recipient outcomes are excellent; with appropriate clinical expertise and system facilitators in place, our experience suggests that other centers may consider the procedure for its significant potential to reduce the gap between transplant organ demand and availability.

Managing Cancer And Living Meaningfully (CALM): randomised feasibility trial in patients with advanced cancer.

BACKGROUND: Managing Cancer And Living Meaningfully (CALM) is a brief individual psychotherapy for patients with advanced cancer. In an intervention-only phase 2a trial, CALM showed promising results, leading to the present 2b pilot, which introduces procedures for randomisation and improved rigour in preparation for a phase 3 randomised controlled trial (RCT). AIMS: To test trial methodology and assess feasibility of a confirmatory RCT. DESIGN: A parallel-arm RCT (intervention vs usual care) with 3 and 6-month follow-ups. Assessment of feasibility included rates of consent, randomisation, attrition, intervention non-compliance and usual care contamination. PRIMARY OUTCOME: depressive symptoms (Patient Health Questionnaire-9; PHQ-9). SECONDARY OUTCOMES: major depressive disorder (MDD), generalised anxiety, death anxiety, spiritual well-being, attachment anxiety and avoidance, self-esteem, experiential avoidance, quality of life and post-traumatic growth. Bayesian conjugate analysis was used in this low-powered setting. SETTING/PARTICIPANTS: 60 adult patients with advanced cancer from the Princess Margaret Cancer Centre. RESULTS: Rate of consent was 32%, randomisation 78%, attrition 25%, non-compliance 37% and contamination 17%. There was support for potential treatment effects on: PHQ-9, OR=1.48, 95% Credible Interval (CRI.95) (0.65, 3.38); MDD, OR=1.56, CRI.95 (0.50, 4.84); attachment anxiety, OR=1.72, CRI.95 (0.73, 4.03); and attachment avoidance, OR=1.58, CRI.95 (0.67, 3.71). There was no support for effects on the seven remaining secondary outcomes. CONCLUSIONS: A phase 3 CALM RCT is feasible and should aim to detect effect sizes of d=0.40, with greater attention to issues of compliance and contamination. TRIAL REGISTRATION NUMBER: NCT02353546.

Nursing patients with chronic critical illness and their families: a qualitative study.

BACKGROUND: chronic critical illness (CCI) is a complex syndrome with a high risk of dying in hospital. Intensive care unit nurses are well-positioned to lead conversations integrating palliative and end-of-life care, yet have reported limited involvement. AIM: To generate further understanding of nurses' experiences of patients with CCI and their families. DESIGN AND METHODS: This qualitative study followed Thorne's interpretive description methods. In 2012, 16 intensive care unit nurses from one academic hospital participated in interviews. RESULTS: Our primary theme was that of internal tension generated through participants' knowledge of patients' anticipated and protracted dying, while wanting to shield families from suffering. This internal tension resulted from responsibilities to preserve hope for patients and families, while at the same time wanting to provide them prognostic information. Participants experienced challenges of: (i) preserving family trust, (ii) determining when and how to engage families in discussions and (iii) providing possibilities of a 'good' death. A secondary theme described constraints to acting on their insights because of interprofessional team dynamics or limited communication, within the team and with the family. CONCLUSION AND RELEVANCE TO CLINICAL PRACTICE: Internal tension, as experienced by participants reflects the challenges of transition from acute to palliation and end-of-life care, made more complex in CCI, because of its poorly defined terminal stage. Nurses' ability to manage the complex process of supporting hope while gradually providing information to build family understanding of CCI highlights their central role in facilitating what and how prognostic information is given, while managing the emotional implications and family response. To better support nurses do this, we advocate for formal structures enabling nurses to participate in decision-making regarding timing of transitions using palliation and end-of-life care.

Lost and stranded: the experience of younger adults with advanced cancer.

PURPOSE: There has been increased awareness recently of the unique medical and psychosocial needs of adolescents and young adults (AYAs) with cancer. However, the existing AYA literature is mainly focused on curative disease or survivorship rather than on advanced disease. Using qualitative methodology, we sought to understand the experience of younger adults with advanced cancer. METHODS: Participants were interviewed using open-ended, discovery-oriented interviews. Data was analyzed using thematic analysis. In total, ten English-speaking advanced cancer patients who were being treated at a comprehensive cancer center in Canada, were interviewed. Participants were between the ages of 18 and 35, and seven of them were female. RESULTS: The diagnosis of cancer was universally experienced as isolating and unexpected, with serious illness regarded as a problem of older individuals. The core challenge of living in the face of dying was felt to be constantly present yet typically unarticulated. Meaning-making tended to be constructed around future-oriented goals rather than upon the life that had been lived. Individuals felt forcefully removed from the stream of life, with a perceived interruption in the developmental tasks of establishing adult identity, becoming autonomous, and forming new relationships. All cited a need for young adult-specific services, yet none could describe specific services that would be beneficial. Many expressed reluctance to engage in individual psychotherapeutic treatment. CONCLUSIONS: Advanced cancer in younger adults was perceived by them as isolating and as interfering with age-appropriate developmental tasks. Creative and flexible psychosocial support programs are needed to engage this population with limited expected survival.

Managing Cancer And Living Meaningfully: study protocol for a randomized controlled trial.

BACKGROUND: We have developed a novel and brief semi-structured psychotherapeutic intervention for patients with advanced or metastatic cancer, called Managing Cancer And Living Meaningfully. We describe here the methodology of a randomized controlled trial to test the efficacy of this treatment to alleviate distress and promote well-being in this population. METHODS/DESIGN: The study is an unblinded randomized controlled trial with 2 conditions (intervention plus usual care versus usual care alone) and assessments at baseline, 3 and 6 months. The site is the Princess Margaret Cancer Centre, part of the University Health Network, in Toronto, Canada. Eligibility criteria include: ≥ 18 years of age; English fluency; no cognitive impairment; and diagnosis of advanced cancer. The 3-6 session intervention is manualized and allows for flexibility to meet individual patients' needs. It is delivered over a 3-6 month period and provides reflective space for patients (and their primary caregivers) to address 4 main domains: symptom management and communication with health care providers; changes in self and relations with close others; sense of meaning and purpose; and the future and mortality. Usual care at the Princess Margaret Cancer Centre includes distress screening and referral as required to in-hospital psychosocial and palliative care services. The primary outcome is frequency of depressive symptoms and the primary endpoint is at 3 months. Secondary outcomes include diagnosis of major or minor depression, generalized anxiety, death anxiety, spiritual well-being, quality of life, demoralization, attachment security, posttraumatic growth, communication with partners, and satisfaction with clinical interactions. DISCUSSION: Managing Cancer And Living Meaningfully has the potential to relieve distress and promote psychological well-being in patients with advanced cancer and their primary caregivers. This trial is being conducted to determine its benefit and inform its dissemination. The intervention has cross-national relevance and training workshops have been held thus far with clinicians from North and South America, Europe, the Middle East, Asia and Africa. TRIAL REGISTRATION: ClinicalTrials.gov NCT01506492 4 January 2012.

Managing Cancer And Living Meaningfully (CALM): phase 2 trial of a brief individual psychotherapy for patients with advanced cancer.

BACKGROUND: Advanced cancer brings substantial physical and psychosocial challenges that may contribute to emotional distress and diminish well-being. In this study, we present preliminary data concerning the effectiveness of a new brief individual psychotherapy, Managing Cancer And Living Meaningfully (CALM), designed to help individuals cope with this circumstance. AIM: To test the feasibility and preliminary effectiveness of CALM to reduce emotional distress and promote psychological well-being and growth. DESIGN: CALM is a brief, manualized, semi-structured individual psychotherapy for patients with advanced cancer. This study employed a phase 2 intervention-only design. The primary outcome was depressive symptoms and the secondary outcomes were death anxiety, attachment security, spiritual well-being and psychological growth. These were assessed at 3 months (t1) and 6 months (t2). Multilevel regression was used to model change over time. SETTING/PARTICIPANTS: A total of 50 patients with advanced or metastatic cancer were recruited from the Princess Margaret Cancer Centre, Toronto, Canada. RESULTS: A total of 39 patients (78%) were assessed at baseline, 24 (48%) at t1, and 16 (32%) at t2. Analyses revealed reductions over time in depressive symptoms: beta = -0.13, confidence interval (CI.95) = (-0.23, -0.022) and death anxiety: beta = -0.23, CI.95 (-0.40, -0.061); and an increase in spiritual well-being: beta = 0.14, CI.95 (0.026, 0.26). CONCLUSIONS: CALM may be a feasible intervention to benefit patients with advanced cancer. The results are encouraging, despite attrition and small effect sizes, and support further study.