Storytelling for impact: the creation of a storytelling program for patient partners in research.

Storytelling is a powerful means to evoke empathy and understanding among people. When patient partners, which include patients, family members, caregivers and organ donors, share their stories with health professionals, this can prompt listeners to reflect on their practice and consider new ways of driving change in the healthcare system. However, a growing number of patient partners are asked to 'share their story' within health care and research settings without adequate support to do so. This may ultimately widen, rather than close, the gap between healthcare practitioners and people affected by chronic disease in this new era of patient and public involvement in research. To better support patient partners with storytelling in the context of a patient-oriented research network, Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) Network adapted an existing in-person storytelling workshop for patient educators within a hospital setting. The result is a 6-week virtual program called Storytelling for Impact, which guides patients, family members, caregivers and organ donors in developing impactful stories and sharing them at health care and research events, e.g., conferences. The online series of synchronous workshops is co-facilitated by story coaches, who are program alumni and Can-SOLVE CKD staff with trained storytelling experience. Each story follows a structure that includes a call to action, which aims to positively impact the priority-setting and delivery of care and research in Canada. The program has been a transformational process for many who have completed it, and numerous other health organizations have expressed interest in sharing this tool with their own patient partners. As result, we have also created an asynchronous online program that can be used by other interested parties outside our network. Patient partners who share their stories can be powerful mediators for inspiring changes in the health care and research landscape, with adequate structured support. We describe two novel programs to support patient partners in impactful storytelling, which are applicable across all health research disciplines. Additional resources are required for sustainability and scale up of training, by having alumni train future storytellers.

Storytelling is a powerful means to evoke empathy and understanding among people. When patient partners share their stories with health professionals, this can prompt listeners to reflect on their practice and consider new ways of improving the healthcare system. However, as a growing number of patient partners are asked to 'share their story' within health care and research settings, there is often not enough tools and resources to support them in preparing their stories in a way that will be impactful for the audience members. Our kidney research network sought to create a novel in-person storytelling program to address this gap within our health research context. The result is a 6-week program called Storytelling for Impact, which guides patient partners­which includes patients, family members, caregivers and organ donors­in developing impactful stories and sharing them in a formal setting. The program is led by story coaches, who are patient partners and staff with trained storytelling experience. Participants are encouraged to include a call to action in their story, which aims to outline clear ways in which health professionals can facilitate positive change in health research or care. Many participants have described the program as transformational, and numerous other health organizations have expressed interest in sharing this tool with their own patient partners. As a result, we have also created a second online program that can be used by other interested parties outside our network. This paper highlights the adaptation process, content, participant feedback and next steps for the program.

'It is a life changing experience': The experiences of living kidney donors who live in rural Australia.

INTRODUCTION: A growing body of research has examined the physical, psychological, social and financial impacts of living kidney donation. However, little is known about the unique experiences or additional burdens faced by living donors from regional or remote locations. OBJECTIVE: To explore the experiences of living kidney donors who live outside metropolitan centres and to determine how support services could be orientated to better meet their unique needs. DESIGN/SETTING/PARTICIPANTS: Seventeen living kidney donors participated in semistructured telephone interviews. Qualitative data were analysed using thematic analysis. FINDINGS: Eight themes were identified: (1) donor's emotional well-being is influenced by the recipient's outcome, (2) varied levels of access to medical support and other important services in rural areas, (3) travel takes a toll on time, finances and well-being, (4) varied level of financial impact, (5) medical, emotional and social challenges, (6) both lay and health professional support is valued, (7) varied levels of knowledge and experiences accessing information and (8) a worthwhile experience overall. CONCLUSION: Despite many challenges, and travel adding to the complexity, rural living kidney donors generally consider it to be a worthwhile experience. The provision of additional emotional, practical and educational support would be welcomed by this group.

Knowledge and Attitude of Chinese Non-Medical University Students Toward Living Organ Donation: A Narrative Analysis.

Objective: This study aims to explore Chinese non-medical university students' knowledge and attitudes toward living organ donation. Methods: In this study, sixteen in-depth, semi-structured interviews were conducted at a Chinese university. Data collection lasted from April 2020 to May 2020. The interviews were recorded and transcribed verbatim. The method of content analysis was used to analyze non-medical university students' knowledge and attitudes toward living organ donation. Results: Qualitative content analysis of the collected data yielded five themes. Themes involve (1) benefits of living organ donation; (2) disincentives to living organ donation; (3) ways to understand living organ donation; (4) ways to promote the dissemination of living organ donation; and (5) traditional Chinese culture as incentives to living organ donation. Conclusion: This study suggests that almost all participants have positive attitudes toward living organ donation on condition that recipients are their lineal relatives including their parents, children, and siblings. What concerns participants most is the adverse impact of living organ donation on their health. These findings could shed some insight into how to strengthen the knowledge of non-medical university students regarding living organ donation.

Living Organ Donation for Transplantation in Bangladesh: Reality and Problems.

The stipulation of living organ transplantation policy and practice in Bangladesh is family-oriented, with relatives being the only people legally eligible to donate organs. There have been very few transplantations of bone marrows, liver lobes, and kidneys from related-living donors in Bangladesh. The major question addressed in this study is why Bangladesh is not getting adequate organs for transplantation. In this study, I examin the stipulations of the policy and practice of living organ donation through the lens of 32 key stakeholders including physicians and nurses, a health administrator, organ donors and recipients, and their family members, as they can shed light on the realities and problems of organ donation for transplantation in Bangladesh. My ethnography reveals that the family members are always encouraged to donate organs for transplantation, and saving the lives of relatives through organ donation is seen as a moral obligation. Many view saving the life of a relative by donating one's organs as equivalent to saving one's own life. An assessment of the dynamics of biomedicine, religion, and culture leads to the conclusion that the family-oriented organ donation policy and practice have been widely endorsed and accepted in Bangladesh, and Islamic ethical principles and collective family ethos undergird that policy and practice. However, the unavailability of medical resources, lack of post-operative coverage for organ donors, religious misconceptions and unawareness of the general public, and the absence of posthumously donated vital organs for transplantation are perceived to be the most common barriers to a successful living donor-recipient pair organ transplantation. By overcoming these obstacles, Bangladesh can develop a successful living donor-recipient pair organ transplantation program that will ensure improved healthcare outcomes, promote altruism and solidarity among Bangladeshi families, and protect the poor from having their organs sold to wealthy patients.

Risk Assessment and Management for Potential Living Kidney Donors: The Role of "Third-Party" Commission.

Living kidney donation is the most common type of living-donor transplant. Italian guidelines allow the living donations from emotionally related donors only after clear and voluntary consent expressed by both the donor and the recipient involved. Living donation raises ethical and legal issues because donors voluntarily undergo a surgical procedure to remove a healthy kidney in order to help another person. According to the Italian standards, the assessment of living donor-recipient pair has to be conducted by a medical "third party", completely independent from both the patients involved and the medical team treating the recipient. Starting from the Hospital "Città della Salute e della Scienza" of Turin (Italy) experience, including 116 living kidney donations, the Authors divided the evaluation process performed by the "Third-Party" Commission into four stages, with a particular attention to the potential donor. Living donation procedures should reflect fiduciary duties that healthcare providers have toward their patients, originating from the relationship of trust between physician and patient. In addition to that, the social implications are enormous if one considers the worldwide campaigns to promote public awareness about organ donation and transplantation, and to encourage people to register their organ donation decisions. The systematic process proposed here can be a tool that proactively reduces and controls the risks of coercion, organ trafficking, vitiated consent, insufficient weighting of donative choice, that could arise especially in donors involved in living kidney donation.

Experiences of completed and withdrawn unspecified kidney donor candidates in the United Kingdom: An inductive thematic analysis from the BOUnD study.

Objectives This study sheds light on some controversial aspects of unspecified kidney donation (UKD) as well as the ways in which potential donors are screened and prepared for the donation experience and its aftermath. The aim of this study was to qualitatively investigate the experiences of individuals involved in the United Kingdom (UK) UKD scheme, including those who complete the donation, are eventually medically withdrawn, or self-withdraw. Better insight into the different experiences of these groups will provide useful guidance to clinical teams on how to better address the differing psychological needs of completed donors as well as those who do not proceed to donation. Methods A purposive sample was recruited through the Barriers and Outcomes in Unspecified Donation (BOUnD) study covering 23 transplant centres in the United Kingdom. Semi-structured interviews were audio-recorded and transcribed verbatim and subjected to inductive thematic analysis. Results Participants consisted of 15 individuals who had donated, 11 who had been withdrawn by the transplant team and nine who had self-withdrawn. The analysis resulted in six themes and 14 subthemes. The major themes were maximizing and sharing benefits; risk-to-motivation analysis; support; self-actualization/finding meaning; the donor as patient; and relationship with the transplant team. Conclusions The data demonstrate that, although all donors enter the process with a similar level of commitment, those who did not proceed to donation expressed dissatisfaction and lingering emotional consequences linked to lack of follow-up from transplant teams. The implication for the UKD programme is that from the beginning there needs to be a strategic and consistent approach to managing expectations in order to prepare those who embark on the donation process for all possible outcomes and their associated emotional consequences.

Overview of global organ donation and transplantation in 2020 / 器官移植

Objective At present, the novel coronavirus pneumonia (COVID-19) pandemic is still raging in certain regions around the globe, and the prevention and control of the pandemic should be strengthened. Under the challenges of respective social environment and allocation of medical resources, and support from the inertia and inherent productivity of the system on which the industry depends, extensive attempts are being delivered to push forward the work of organ donation and transplantation in each country. Under the guidance of national experts and committee members, Shanxi Provincial Human Organ Procurement and Allocation Service Center was established on August 28, 2018 approved by the former Shanxi Provincial Health and Family Planning Commission. It is the only independent non-profit medical institution in Shanxi Province. In this article, the system construction of citizen's organ donation and transplantation fitting national and provincial conditions was further explored according to the data analysis of organ donation and transplantation in the United States and Spain during the COVID-19 pandemic combined with the implementation of organ donation work in Shanxi Provincial Human Organ Procurement and Allocation Service Center.

Feasibility, Safety and Efficacy of Enhanced Recovery After Living Donor Nephrectomy: Systematic Review and Meta-Analysis of Randomized Controlled Trials.

This meta-analysis aims to compare enhanced recovery after surgery (ERAS) vs. standard perioperative practice in the management of living kidney donors. Primary endpoints included mortality, complications, length of stay (LOS) and quality of life after living donor nephrectomy. Medline, Embase, Scopus, Cochrane and Web of Science databases were searched. In total, 3029 records were identified. We then screened 114 full texts. Finally, 11 studies were included in the systematic review corresponding to 813 living donors. Of these, four randomized controlled trials were included in the meta-analysis. ERAS resulted in shorter LOS (95CI: -1.144, -0.078, I2 = 87.622%) and lower incidence of post-operative complications (95CI: 0.158, 0.582, I2 = 0%). This referred to Clavien-Dindo I-II complications (95CI: 0.158, 0.582, I2 = 0%). There was no difference in Clavien-Dindo III-V complications (95CI: 0.061,16.173, I2 = 0%). ERAS donors consumed decreased amounts of narcotics during their hospital stay (95CI: -27.694, -8.605, I2 = 0%). They had less bodily pain (95CI:6.735, 17.07, I2 = 0%) and improved emotional status (95CI: 6.593,13.319, I2 = 75.682%) one month postoperatively. ERAS protocols incorporating multimodal pain control interventions resulted in a mean reduction of 1 day in donors' LOS (95CI: -1.374, -0.763, I2 = 0%). Our results suggest that ERAS protocols result in reduced perioperative morbidity, shorter length of hospital stay and improved quality of life after living donor nephrectomy.

Satisfaction with life and depressive symptoms in living organ donors and non-donors: New insights from the National Living Donor Assistance Center.

BACKGROUND: Previous studies indicate there may be psychological consequences of being unable to serve as a living donor, but these have not been explored in a large national cohort of low-income individuals who initiated living donor evaluation in US transplant centers. METHODS: Using data from 6574 National Living Donor Assistance Center (NLDAC) participants (November 1, 2007-December 31, 2018), we utilized a cross-sectional study design to evaluate short-term depressive symptoms and satisfaction with life in living donors and non-donors (those who were declined or withdrew from evaluation) using the Satisfaction with Life Scale (SWLS) and the PHQ-8, with and without risk adjustment using linear regression. RESULTS: National Living Donor Assistance Center participants originated from 207 US transplant centers. 52% of NLDAC participants responded to the survey (n = 3423; donors = 2848 (58.6% of all donors), non-donors = 575 (33.5% of all non-donors); ncenters  = 201)). Respondents were significantly older, more likely to be female, white, non-Hispanic, married, more educated, more full-time employed, and more likely to be unrelated to the recipient vs non-respondents (all, P < .001). Among survey respondents, donors were significantly younger, more likely to be non-Hispanic, employed, and related to the recipient compared to non-donors (all, P < .05). Higher PHQ-8 scores were correlated with lower SWL scores (r = -.32, P < .001). Both groups displayed high SWLS (donors vs non-donors: 27.1 vs 26.3, P = .002). Both groups had low levels of depressive symptoms overall, but donors had more symptoms than non-donors (3.5 vs 2.4, P < .001). After risk adjustment, non-donors had significantly less depressive symptoms by PHQ-8 (28% lower, P < .001), but had lower life satisfaction (1.2 points lower, P < .001). CONCLUSIONS: Donors and non-donors have high global levels of overall life satisfaction and low levels of depressive symptoms at 8 weeks after donation or denial. While small effect sizes were observed between groups in these outcomes, being a non-donor was an independent risk factor for lower life satisfaction, which warrants further evaluation.

Coercion, dissatisfaction, and social stigma: an ethnographic study of compensated living kidney donation in Iran.

This article updates the qualitative research on Iran reported in the 2012 article by Tong et al. "The experiences of commercial kidney donors: thematic synthesis of qualitative research" (Tong et al. in Transpl Int 25:1138-1149, 2012). The basic approach used in the Tong et al. article is applied to a more recent and more comprehensive study of Iranian living organ donors, providing a clearer picture of what compensated organ donation is like in Iran since the national government began regulating compensated donation. Iran is the only country in the world where kidney selling is legal, regulated, and subsidized by the national government. This article focuses on three themes: (1) coercion and other pressures to donate, (2) donor satisfaction with their donation experience, and (3) whether donors fear social stigma. We found no evidence of coercion, but 68% of the paid living organ donors interviewed felt pressure to donate due to extreme poverty or other family pressures. Even though 27% of the living kidney donors interviewed said they were satisfied with their donation experience, 74% had complaints about the donation process or its results, including some of the donors who said they were satisfied. In addition, 84% of donors indicated they feared experiencing social stigma because of their kidney donation.

Acupuncture in living liver and kidney donors: a feasibility study.

OBJECTIVE: The purpose of this study was to test the feasibility of integrating acupuncture into the routine care of living liver and kidney donors during the process of donation and recovery. METHODS: This is a pilot study on the feasibility of a brief acupuncture intervention for living liver and kidney donors. Participants received acupuncture immediately prior to organ donation surgery, every day as inpatients, while recovering from donation, and at a 2-week follow-up. Prior to surgery, questionnaires were completed on acupuncture outcome expectations and the State-Trait Anxiety Inventory. After participating, those who received acupuncture provided feedback. Following the active intervention, a retrospective chart review was conducted, using donors who did not receive acupuncture as a comparison cohort. RESULTS: Forty donor candidates were approached and recruited, 32 consented and ultimately 25 donors participated in the acupuncture intervention (15 of kidney, 10 of liver), 68% female, and 88% Caucasian; only one had prior experience with acupuncture. Participants received an average of 4 sessions while inpatient (range 2-8). Those who expected acupuncture to be more helpful prior to the intervention reported lower inpatient pain scores (P = 0.04). Qualitative feedback from patients was predominantly positive, indicating acupuncture was helpful for relaxation and pain. However, a few patients reported feeling overburdened during postdonation recovery, and that the study was viewed as additional obligation. CONCLUSION: Preliminary findings suggest it is feasible to integrate acupuncture into inpatient recovery for living organ donation. Tailoring interventions to the specific needs of patients is important to address ongoing concerns. Larger studies are needed to further ascertain benefits of peri-operative acupuncture.

Acupuncture in living liver and kidney donors: a feasibility study / 中西医结合学报

OBJECTIVE@#The purpose of this study was to test the feasibility of integrating acupuncture into the routine care of living liver and kidney donors during the process of donation and recovery.@*METHODS@#This is a pilot study on the feasibility of a brief acupuncture intervention for living liver and kidney donors. Participants received acupuncture immediately prior to organ donation surgery, every day as inpatients, while recovering from donation, and at a 2-week follow-up. Prior to surgery, questionnaires were completed on acupuncture outcome expectations and the State-Trait Anxiety Inventory. After participating, those who received acupuncture provided feedback. Following the active intervention, a retrospective chart review was conducted, using donors who did not receive acupuncture as a comparison cohort.@*RESULTS@#Forty donor candidates were approached and recruited, 32 consented and ultimately 25 donors participated in the acupuncture intervention (15 of kidney, 10 of liver), 68% female, and 88% Caucasian; only one had prior experience with acupuncture. Participants received an average of 4 sessions while inpatient (range 2-8). Those who expected acupuncture to be more helpful prior to the intervention reported lower inpatient pain scores (P = 0.04). Qualitative feedback from patients was predominantly positive, indicating acupuncture was helpful for relaxation and pain. However, a few patients reported feeling overburdened during postdonation recovery, and that the study was viewed as additional obligation.@*CONCLUSION@#Preliminary findings suggest it is feasible to integrate acupuncture into inpatient recovery for living organ donation. Tailoring interventions to the specific needs of patients is important to address ongoing concerns. Larger studies are needed to further ascertain benefits of peri-operative acupuncture.

[The Good Samaritan Donor Experience].

The need for patients with a chronic kidney failure and on dialysis to embark on a kidney transplant process, poses the challenge to identify alternative and effective surgical strategies to overcome the insufficient number of deceased donors. The purpose is to allow the considerable number of patients on the kidney transplant waiting lists to receive appropriate treatment in time and under the most favorable clinical conditions. Living donation from a significant other is becoming increasingly widespread, on a national and international level. Furthermore, in the last years clinical experience is showing a special kind of kidney living donation : the Good Samaritan donation, i.e. when the donor has no emotional or blood bond with the recipient and decides to become a donor as a mere act of generosity, with no remuneration or reward in return. This article, after a brief analysis of the phenomenon through data obtained from recent international studies, shares the direct experience of the Clinical Psychology Service at IRCCS - ISMETT with regard to the psychological assessment and support throughout the clinical process of a Good Samaritan kidney donor. Sharing our experience and starting a discussion on this issue is the result of the need to define shared guidelines on the psychological approach to be used with potential Good Samaritan donors.

Perceptions, motivations, and concerns about living organ donation among people living with HIV.

Recent changes to United States law now permit people living with HIV (PLWH) to donate organs to HIV-infected (HIV+) recipients under research protocols. PLWH may have unique motivations for and concerns about living donation and understanding them is critical to ensuring the integrity of this novel approach to organ transplantation. We conducted in-depth interviews with PLWH from an urban HIV clinic who had previously indicated their willingness to be a living donor. Interviews elicited information on their motivations, perceived benefits, and concerns regarding living donation. Codes were identified inductively and then organized into themes and subthemes. Two coders independently analyzed the interviews and reconciled differences in coding by consensus. Thematic saturation was reached after 20 interviews. Motivations for living donation among PLWH included an altruistic desire to help others as well as HIV-specific motivations including solidarity with potential recipients and a desire to overcome HIV-related stigma. Perceived benefits of living donation included gratification from saving or improving the recipient's life and conferring a sense of normalcy for the HIV+ donor. Concerns about donation included the possibility of a prolonged recovery period, organ failure, and transmission of another strain of the virus to the recipients. PLWH had unique motivations, perceived benefits, and concerns about living donation in addition to those previously identified in the general population. These unique factors should be addressed in research protocols, informed consent processes, and the education and training of independent living donor advocates so that these endeavors are ethically sound.

Social Media in the Identification of Living Kidney Donors: Platforms, Tools, and Strategies.

PURPOSE OF REVIEW: Living donor transplantation offers patients with end-stage renal disease faster access to transplant and better survival and quality of life than waiting for a deceased donor or remaining on dialysis. While many people state they would be willing to help someone in need through kidney donation, there are education and communication barriers to donor candidate identification. These barriers might be mitigated by technological innovations, including the use of social media. RECENT FINDINGS: This article describes the state of contemporary evidence regarding use of social media tools and interventions to increase access to living donor transplantation, as reported in peer-reviewed medical literature, as well as programs that have not yet been formally evaluated. SUMMARY: As social media platforms continue to grow and expand, a commitment to understanding and facilitating the use of social media by the transplant community may support patients who are interested in using social media as a tool to find a living kidney donor.

Strategies for Increasing Knowledge, Communication, and Access to Living Donor Transplantation: an Evidence Review to Inform Patient Education.

PURPOSE OF REVIEW: Inadequate knowledge of the benefits, risks and opportunities for living donation is an important, potentially modifiable barrier to living donor transplantation. We assessed the current state of the evidence regarding strategies to increase knowledge, communication and access to living donor transplantation, as reported in peer-reviewed medical literature. RECENT FINDINGS: Nineteen studies were reviewed, categorized as programs evaluated in randomized controlled trials (8 studies) and programs supported by observational (non-randomized) studies (11 studies). Content extraction demonstrated that comprehensive education about living donation and living donor transplantation involves multiple learners - the transplant candidate, potential living donors, and social support networks - and requires communicating complex information about the risks and benefits of donation, transplantation and alternative therapies to these different audiences. Transplant centers can help transplant patients learn about living donor transplantation through a variety of formats and modalities, including center-based, home-based and remote technology-based education, outreach to dialysis centers, and social media. Evaluation of these strategies and program themes informed a new Organ Procurement and Transplantation Network (OPTN)/United Network for Organ Sharing (UNOS) public education brochure. SUMMARY: Increasing transplant candidate knowledge and comfort in talking about living donation and transplantation can reduce educational barriers to pursuit of living donor transplants. Ongoing efforts are needed to develop, refine and disseminate educational programs to help improve transplant access for more patients in need of organ donors.

On harm thresholds and living organ donation: must the living donor benefit, on balance, from his donation?

For the majority of scholars concerned with the ethics of living organ donation, inflicting moderate harms on competent volunteers in order to save the lives or increase the life chances of others is held to be justifiable provided certain conditions are met. These conditions tend to include one, or more commonly, some combination of the following: (1) The living donor provides valid consent to donation. (2) Living donation produces an overall positive balance of harm-benefit for donors and recipients which cannot be obtained in a less harmful manner. (3) Donation is not liable to cause significant and long-term morbidity to, or the death of, the donor. This paper critically examines the suggestion that these criteria are not sufficient to offer a general account of justified living organ donation in the context of competent volunteers and that key to justified living organ donation is that donors receive sufficient benefits from their donation that these outweigh the harms they suffer. However, although this view-termed here 'The Donor Benefit Standard'-directs welcome attention to the many and complex motives which may underlie living organ donation, this paper ultimately concludes that given the threats this position poses to individual autonomy and the lives of those in need of organ transplants 'The Donor Benefit Standard' should ultimately be rejected.

Physician perceptions about living organ donation in patients with Amyotrophic Lateral Sclerosis.

OBJECTIVES: Patients with Amyotrophic Lateral Sclerosis (ALS) have expressed desire to become living organ donors but are unable to do so with current organ donation policies. Our objective is to assess ALS patient's interest in organ donation, and perceived concerns of this practice by ALS neurologists. PATIENTS AND METHODS: An electronic survey was administered to ALS neurologists across the United States regarding living organ donation in ALS patients prior to respiratory failure. RESULTS: 52 complete responses were received from 121 invites. 67% (35/52) of neurologists expressed no concerns about living organ donation in ALS patients, and 33% had concerns. The concerns related to respiratory failure, anesthesia exposure and renal dysfunction. With their concerns addressed, 71% of neurologists reported that they would endorse living organ donation. 49% of neurologists reported being asked by a patient for information regarding living organ donation. ALS neurologists felt that 22.8% of ALS patients (median 19%) would be interested in learning more about organ donation, while only 6% of neurologists broach this subject with their patients. CONCLUSION: Our results indicate that 1 in every 4 ALS patients may be interested in exploring options for living organ donation, and this topic is not routinely addressed by ALS clinics. These results indicate an unexplored area of patient interest. To honor a patient's wishes to donate, the transplant community will have to accommodate living organ donation from terminally ill patients, and address neurologist concerns. Such a practice could benefit two groups of patients.