The Lived Experience of “Being Evaluated” for Organ Donation

Hanson, Camilla S.; Ralph, Angelique F.; Manera, Karine; Gill, John S.; Kanellis, John; Wong, Germaine; Craig, Jonathan C.; Chapman, Jeremy R.; Tong, Allison

doi:10.2215/cjn.03550417

Cited by 30 publications

(18 citation statements)

References 32 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…There is ongoing debate about the extent to which the donor‐recipient relationship should alter the level of acceptable risk to the donor. The emphasis on autonomy expressed by some parent and spousal ineligible donor candidates in our study has also been articulated in a recent study of ineligible donor candidates as well as studies conducted in living donors and among the general community . The current KDIGO guidelines recommends the assessment of benefits and risks to the potential donor, however, there is no consensus on the maximum level of acceptable risk and quantification of the potential emotional and psychological benefits is complex Further, there has been a recent shift from considering the risks to the donor and benefits to the recipient at an individual level, toward a decision‐making model that combines risks and benefits for ‘interdependent donors’ (donors residing in the same household as their recipient), particularly in liver donation where recipient death is imminent without a transplant .…”

Section: Discussionmentioning

confidence: 75%

The experiences and impact of being deemed ineligible for living kidney donation: Semi‐structured interview study

et al. 2019

Self Cite

View full text Add to dashboard Cite

Aim We aimed to describe the impact and experience of being deemed ineligible as a living kidney donor. Methods Semi‐structured interviews were conducted with 27 ineligible donor candidates. Transcripts were analysed thematically. Results Seven themes were identified: deriving health and relationship benefits in the process (strengthening emotional connection, identifying problematic health conditions); devastating loss and disappointment (harbouring guilt over personal failings, shattering confidence and hope, undermining relationships with extended family and friends, disrupting home dynamics); constrained within a rigid system (denied autonomy, resorting to other avenues); acknowledging as matter of fact (accepting the clinical decision, reassured by preventing a poor outcome); reluctant to relinquish the donor identity (unable to fulfil family duty, having the donor role stolen, holding onto other opportunities to donate); uncertainty in unpredictability, inconsistency and ambiguities (frustrated by inefficiencies, questioning clinician motivation, suspended donor status, unfairness in changeable eligibility criteria, unresolved concerns and questions of own health); and abandoned in despair (lacking practical support to meet eligibility criteria, ill prepared for rejection, dismissed and discarded by the system). Conclusion Being deemed unsuitable for donation took an emotional toll on ineligible donor candidates who felt immense guilt for ‘failing’ the potential recipient. Ineligible donor candidates were frustrated and angry with the perceived lack of support from clinicians and rigidity of the evaluation process. Informing potential donors of available services, including psychological support, communicating the decision sensitively and with sufficient time, and full disclosure of their health status, may contribute to improved adjustment following the ineligibility decision.

show abstract

Section: Discussionmentioning

confidence: 75%

The experiences and impact of being deemed ineligible for living kidney donation: Semi‐structured interview study

et al. 2019

Self Cite

View full text Add to dashboard Cite

show abstract

“…The published literature on living kidney donation has focused intensely on physical health consequences attributable to living in a single kidney state . Clinical practice guidelines, and a number of high‐quality studies, including the RELIVE multicenter cohort, have also recognized that many kidney donors think about kidney donation as a meaningful act . A number of detailed, qualitative studies have demonstrated the ways that kidney donors consider donation as an important act of gift‐giving that is often tied deeply to complex relationships and duties .…”

Section: Discussionmentioning

confidence: 99%

Outcomes for individuals turned down for living kidney donation

Reese

Allen

Carney³

et al. 2018

Clinical Transplantation

View full text Add to dashboard Cite

show abstract

“…These decisions may be based on several factors, such as the diagnosis of an unknown medical condition, or the identification of psychosocial stressors that preclude donation. In this context, being denied as a living donor or independently withdrawing from the evaluation for justified reasons may lead to negative psychological consequences, such as feelings of guilt, worry, anger, or sadness 1‐5 . Further understanding of these psychological outcomes in the living donation process may be useful to transplant teams who are providing care to living donor candidates 1,3,4,6 …”

Section: Introductionmentioning

confidence: 99%

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

Mathur

Hong

Goodrich

et al. 2020

Clinical Transplantation

View full text Add to dashboard Cite

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 nondonors); n centers = 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 satis-faction 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.

show abstract

The Lived Experience of “Being Evaluated” for Organ Donation

Cited by 30 publications

References 32 publications

The experiences and impact of being deemed ineligible for living kidney donation: Semi‐structured interview study

The experiences and impact of being deemed ineligible for living kidney donation: Semi‐structured interview study

Outcomes for individuals turned down for living kidney donation

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

Contact Info

Product

Resources

About