Ethically and Effectively Advancing Living Donation

Waterman, Amy D.; Rodrigue, James R.

doi:10.1002/9781444317459.ch18

Cited by 5 publications

(9 citation statements)

References 100 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…As we and others have described elsewhere [31,45], some have questioned whether a proactive LDKT educational approach that involves interventions in the home and includes other family member/friends could be considered a subtle (or overt) form of coercion. For instance, inviting family members and friends to the home or clinic for LDKT education may place some guests in a difficult position – either accept the invitation and then be confronted with the possibility of being asked by the patient (or other family members) at some later time to consider living donation, or decline the invitation and be perceived by the patient (or other family members) as uncaring or otherwise not interested in being a potential living donor.…”

Section: Discussionmentioning

confidence: 99%

“…For instance, inviting family members and friends to the home or clinic for LDKT education may place some guests in a difficult position – either accept the invitation and then be confronted with the possibility of being asked by the patient (or other family members) at some later time to consider living donation, or decline the invitation and be perceived by the patient (or other family members) as uncaring or otherwise not interested in being a potential living donor. While we understand and recognize the issue of coercion, we argue that educating patients and families, especially underserved minorities, about LDKT as part of a community outreach program is ethically justifiable [14,31,33]. …”

Section: Discussionmentioning

confidence: 99%

“…Some are more likely to deny the need for kidney transplantation, have religious objections to transplantation, question the survival and quality of life benefits of transplantation, and mistrust the healthcare system because of their experience of discrimination in dialysis units [14,25,27,28]. Furthermore, healthy family members and friends of Black Americans may lack awareness of the benefits of LDKT or risks of kidney donation, may have inaccurate assumptions about their suitability for living donation, and may have high mistrust of the healthcare system [22,24,29–31]. Importantly, Ayanian et al [32] found that when Black Americans are well informed of their transplant options and the benefits of transplantation, they prefer transplantation at the same rate as Whites.…”

Section: Introduction / Backgroundmentioning

confidence: 99%

See 2 more Smart Citations

The “House Calls” Trial: A Randomized Controlled Trial to Reduce Racial Disparities in Live Donor Kidney Transplantation: Rationale and Design

Rodrigue

Pavlakis

Egbuna

et al. 2012

Contemporary Clinical Trials

Self Cite

View full text Add to dashboard Cite

Despite a substantially lower rate of live donor kidney transplantation among Black Americans compared to White Americans, there are few systematic efforts to reduce this racial disparity. This paper describes the rationale and design of a randomized controlled trial aims evaluating the comparative effectiveness of three different educational interventions for increasing live donor kidney transplantation in Black Americans. This trial is a single-site, urn-randomized controlled trial with a planned enrollment of 180 Black Americans awaiting kidney transplantation. Patients are randomized to receive transplant education in one of three education conditions: through group education at their homes (e.g., House Calls), or through group (Group-Based) or individual education (Individual Counseling) in the transplant.. The primary outcome of the trial is the occurrence of a live donor kidney transplant, with secondary outcomes including living donor inquiries and evaluations as well as changes in patient live donor kidney transplantation readiness, willingness, knowledge, and concerns. Sex, gender, dialysis status, and quality of life are evaluated as moderating factors. Findings from this clinical trial have the potential to inform strategies for reducing racial disparities in live donor kidney transplantation. Similar trials have been developed recently to broaden the evaluation of House Calls as an innovative disparity-reducing intervention in kidney transplantation. Trial Registration: Clinicaltrials.gov NCT00785265

show abstract

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introduction / Backgroundmentioning

confidence: 99%

See 1 more Smart Citation

The “House Calls” Trial: A Randomized Controlled Trial to Reduce Racial Disparities in Live Donor Kidney Transplantation: Rationale and Design

Rodrigue

Pavlakis

Egbuna

et al. 2012

Contemporary Clinical Trials

Self Cite

View full text Add to dashboard Cite

show abstract

“…The resulting Living Donation Storytelling Project web-based digital library [ 53 ] includes 5 key features to break open learning and pursuit of living donation in new ways: (1) digital video capture technology to film and seam videos together remotely without the need for an editor; (2) guided prompts to help storytellers select and share about topics most important to them using a mobile phone, tablet, or laptop; (3) a search engine to allow for audiences to locate stories most like them by demographic and story type; (4) the ability to upload content both to the library and social media to help individuals find living donors; and (5) referrals to additional educational content about LDKT, including the location of the nearest transplant center. The library is categorized into donor stories, recipient stories, family/friend stories, and stories from people in need of a living kidney donor.…”

Section: Methodsmentioning

confidence: 99%

A Digital Library for Increasing Awareness About Living Donor Kidney Transplants: Formative Study

Waterman¹,

Wood²,

Ranasinghe³

et al. 2020

JMIR Form Res

View full text Add to dashboard Cite

Background It is not common for people to come across a living kidney donor, let alone consider whether they would ever donate a kidney themselves while they are alive. Narrative storytelling, the sharing of first-person narratives based on lived experience, may be an important way to improve education about living donor kidney transplants (LDKTs). Developing ways to easily standardize and disseminate diverse living donor stories using digital technology could inspire more people to consider becoming living donors and reduce the kidney shortage nationally. Objective This paper aimed to describe the development of the Living Donation Storytelling Project, a web-based digital library of living donation narratives from multiple audiences using video capture technology. Specifically, we aimed to describe the theoretical foundation and development of the library, a protocol to capture diverse storytellers, the characteristics and experiences of participating storytellers, and the frequency with which any ethical concerns about the content being shared emerged. Methods This study invited kidney transplant recipients who had received LDKTs, living donors, family members, and patients seeking LDKTs to record personal stories using video capture technology by answering a series of guided prompts on their computer or smartphone and answering questions about their filming experience. The digital software automatically spliced responses to open-ended prompts, creating a seamless story available for uploading to a web-based library and posting to social media. Each story was reviewed by a transplant professional for the disclosure of protected health information (PHI), pressuring others to donate, and medical inaccuracies. Disclosures were edited. Results This study recruited diverse storytellers through social media, support groups, churches, and transplant programs. Of the 137 storytellers who completed the postsurvey, 105/137 (76.6%) were white and 99/137 (72.2%) were female. They spent 62.5 min, on average, recording their story, with a final median story length of 10 min (00:46 seconds to 32:16 min). A total of 94.8% (130/137) of storytellers were motivated by a desire to educate the public; 78.1% (107/137) were motivated to help more people become living donors; and 75.9% (104/137) were motivated to dispel myths. The ease of using the technology and telling their story varied, with the fear of being on film, emotional difficulty talking about their experiences, and some technological barriers being reported. PHI, most commonly surnames and transplant center names, was present in 62.9% (85/135) of stories and was edited out. Conclusions With appropriate sensitivity to ensure diverse recruitment, ethical review of content, and support for storytellers, web-based storytelling platforms may be a cost-effective and convenient way to further engage patients and increase the curiosity of the public in learning more about the possibility of becoming living donors.

show abstract

“…The complexity of the topic and the public policy focus of research leads me to a multidisciplinary, pragmatic approach that takes an overall systems perspective. In particular, I develop a theoretical framework that takes into account the multiple interacting systems that impact on a patient's opportunity for LDKT, similar to a social-ecological transplant model that has previously been suggested as suitable for research in this area (152). The framework includes patients' family and wider social networks, multiple levels of the health system, and wider socio-cultural and community factors, all of which influence access to LDKT.…”

Section: Organisation Of the Thesismentioning

confidence: 99%

Increasing the Rate of Living Donor Kidney Transplantation in New Zealand: Developing an Evidence Base

Martin¹

View full text Add to dashboard Cite

<p>Increasing numbers of New Zealanders are experiencing end-stage renal failure, requiring kidney transplantation or dialysis. A transplant from a living kidney donor is the preferred treatment, offering better quality of life than dialysis, and greater life expectancy and cost-effectiveness than dialysis and deceased donor transplantation. Living donor transplant rates in New Zealand have plateaued and may even be declining at a time when many comparable countries are experiencing sustained increases. Viewing this issue as a complex policy problem, this research aimed to identify how rates of living donor kidney transplantation could be increased in New Zealand. Based on Walt and Gilson’s health policy triangle, which suggests that understanding policy issues requires attention not only to content (policy options) but also processes, contextual issues and actors, this research asked firstly, what the barriers are for patients in the journey to living donor transplantation, and secondly, why greater attention has not been paid to how to increase current rates, given evidence of better outcomes for patients and cost-effectiveness. The research took a patient-centred, systems perspective and used a pragmatic, interdisciplinary, mixed-methods research design. Methods included a survey of kidney transplant waiting-list patients; interviews with patients, renal health professionals and key informants; document analysis; and a survey of health managers. A Five-Stage Model of the living donor kidney transplant process was developed to map specific barriers in the journey to transplantation and Kingdon’s multiple streams agenda-setting model was used to examine the issue of why so little attention had been paid to living donor kidney transplantation in New Zealand. The research found that, in common with patients elsewhere, New Zealand patients are not systematically informed about living donor transplantation, would like to receive a transplant but have concerns about health and financial impacts on donors, and face challenges in approaching people in their networks about living donation. Incompatibility and medical unsuitability are major barriers for potential donors who do come forward. Issues with existing service models, configuration of key roles in transplant services, and delays in donor work-up processes are all evident. Perceived ethical constraints may limit how willing health professionals are to promote living donation, requiring both potential recipients and donors to be very proactive to successfully navigate the living donation process. There has been political will to address organ shortages in the past but there has been little focus specifically on live donation. An absence of feasible and acceptable options for decision-makers to consider, crowding-out by demand for dialysis services, lack of leadership, absence of an effective advocate, and issues in funding and accountability arrangements may all have contributed to why live kidney transplantation has not had more prominence on the policy agenda in New Zealand in recent years. Overall, the research concludes that policy and practice in the wider system are not adequately oriented to supporting living donor kidney transplantation as the preferred treatment for end-stage renal failure. A comprehensive national strategy for increasing New Zealand’s rate is recommended.</p>

show abstract

Ethically and Effectively Advancing Living Donation

Cited by 5 publications

References 100 publications

The “House Calls” Trial: A Randomized Controlled Trial to Reduce Racial Disparities in Live Donor Kidney Transplantation: Rationale and Design

The “House Calls” Trial: A Randomized Controlled Trial to Reduce Racial Disparities in Live Donor Kidney Transplantation: Rationale and Design

A Digital Library for Increasing Awareness About Living Donor Kidney Transplants: Formative Study

Increasing the Rate of Living Donor Kidney Transplantation in New Zealand: Developing an Evidence Base

Contact Info

Product

Resources

About