Focus Group Study of Public Opinion About Paying Living Kidney Donors in Australia

Tong, Allison; Ralph, Angelique F.; Chapman, Jeremy R.; Wong, Germaine; Gill, John S.; Josephson, Michelle A.; Craig, Jonathan C.

doi:10.2215/cjn.10821014

Cited by 12 publications

(6 citation statements)

References 41 publications

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“…This manner of thematic analysis has similarly been applied in previous focus group studies of patients on renal replacement therapy. [24][25][26][27][28]…”

Section: Discussionmentioning

confidence: 99%

Patient and caregiver perspectives on burnout in peritoneal dialysis

et al. 2020

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Background: Peritoneal dialysis (PD) can offer patients more autonomy and flexibility compared with in-center hemodialysis (HD). However, burnout – defined as mental, emotional, or physical exhaustion that leads to thoughts of discontinuing PD – is associated with an increased risk of transfer to HD. We aimed to describe the perspectives of burnout among patients on PD and their caregivers. Methods: In this focus group study, 81 patients and 45 caregivers participated in 14 focus groups from 9 dialysis units in Australia, Hong Kong, and the United States. Transcripts were analyzed thematically. Results: We identified two themes. Suffering an unrelenting responsibility contributed to burnout, as patients and caregivers felt overwhelmed by the daily regimen, perceived their life to be coming to a halt, tolerated the PD regimen for survival, and had to bear the burden and uncertainty of what to expect from PD alone. Adapting and building resilience against burnout encompassed establishing a new normal, drawing inspiration and support from family, relying on faith and hope for motivation, and finding meaning in other activities. Conclusions: For patients on PD and their caregivers, burnout was intensified by perceiving PD as an unrelenting, isolating responsibility that they had no choice but to endure, even if it held them back from doing other activities in life. More emphasis on developing strategies to adapt and build resilience could prevent or minimize burnout.

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“…This manner of thematic analysis has similarly been applied in previous focus group studies of patients on renal replacement therapy. [24][25][26][27][28]…”

Section: Discussionmentioning

confidence: 99%

Patient and caregiver perspectives on burnout in peritoneal dialysis

et al. 2020

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“…Public opinion on this matter suggests that aggressively incentivizing donation may not have the effect of dramatically increasing donation rates. In a summary of 12 focus groups conducted in Australia in 2015, Tong et al [34] report that the Australian public generally supported reimbursement for costs Controversies in organ transplantation associated with donation as a way to support living donation. However, this same group found that additional financial incentives in addition to reimbursement of expenses to be 'morally reprehensible.'…”

Section: The Merits and Failings Of Financial Compensation For Living...mentioning

confidence: 99%

Financial compensation for organ donors

Harbell

Mathur²

2019

Current Opinion in Organ Transplantation

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Purpose of reviewWith an increasing demand for donor organs, strategies to increase the number of available donor organs have become more focused. Compensating donors for donation is one strategy proposed to increase the availability of organs for transplant. This has been implemented in several systems internationally, but debate continues in the United States with respect to appropriate strategies. The National Organ Transplant Act (NOTA) currently prohibits the transfer of any human organ 'for valuable consideration' for transplantation, but allows for the removal of financial disincentives. Recent findingsSeveral proposals currently exist for compensating patients for living donation. Recent data have focused on studying and creating mechanisms for reimbursement of costs incurred as part of the donation process, which is related to the removal of disincentives to living donation. Others have advocated for the provision of actual incentives to patients for the act of donating, in an attempt to further expand living donation. The current debate focuses on what measures can reasonably be taken to increase donation, and whether additional incentives will encourage more donation or reduce the motivation for altruistic donation. SummaryCurrently, the transplant community broadly supports the removal of disincentives for living donors, including reimbursement of expenses for travel, housing and lost wages incurred during evaluation, surgery and after care. Others have advocated for financial incentives to further increase the number of donor organs available for transplant. Although the removal of disincentives is currently allowed under the existing legal structure of NOTA, providing financial incentives for living donation would require further evaluation of the economics, law, ethics and public readiness for a significant policy shift.

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“…For some cultural groups, this finding would be ethically challenging and contrary to the perspective of studies suggesting that attaching monetary value to human gametes is deemed disrespectful of ancestral genetic gifts and/or culturally viewed as taboo ( Glover, 2008 ). Moreover, they reflect aspects of the ongoing ethical impasse about the commodification of human life in the context of a burgeoning health industry ( Klitzman and Sauer, 2015a , Klitzman and Sauer, 2015b , Tong et al, 2015 , Gillespie, 2019 ). Alternatively, given the ethically sensitive nature of these items, the finding may simply be a reflection of response bias as the majority of participants were either working in the field or had lived experience of fertility treatment.…”

Section: Discussionmentioning

confidence: 99%

“…It is also important to note that responses about concerns may, to some degree, have been shaped by culturally determined ethical attitudes (i.e. both New Zealand and Australia are societies shaped by public perceptions of organ and tissue altruistic donation and civic generosity, where financial inducements may be construed as morally reprehensible and commercially exploitative) ( Hammarberg et al, 2011 , Shaw, 2010 , Tong et al, 2015 ). This may be of particular relevance in New Zealand, where indigenous Māori views of gametes as sacred, the embodiment of genetic lineage and worthy of protection ( Glover, 2008 ) may have shaped community perceptions; indeed, the study results may have been influenced by the increased representation of New Zealand over Australian research participants.…”

Section: Discussionmentioning

confidence: 99%

Section: <B>limitationsmentioning

confidence: 99%

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Fertility stakeholders’ concerns regarding payment for egg and sperm donation in New Zealand and Australia

Goedeke

Shepherd

Rodino

2022

Reproductive Biomedicine & Society Online

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Focus Group Study of Public Opinion About Paying Living Kidney Donors in Australia

Cited by 12 publications

References 41 publications

Patient and caregiver perspectives on burnout in peritoneal dialysis

Patient and caregiver perspectives on burnout in peritoneal dialysis

Financial compensation for organ donors

Fertility stakeholders’ concerns regarding payment for egg and sperm donation in New Zealand and Australia

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