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

被引:12
作者
Ralph, Angelique F. [1 ,2 ]
Chadban, Steve J. [3 ,4 ]
Butow, Phyllis [1 ,5 ,6 ]
Craig, Jonathan C. [7 ]
Kanellis, John [8 ]
Wong, Germaine [2 ,9 ]
Logeman, Charlotte [2 ,9 ]
Tong, Allison [2 ,9 ]
机构
[1] Univ Sydney, Sch Psychol, Sydney, NSW, Australia
[2] Children's Hosp Westmead, Centre Kidney Res, Sydney, NSW, Australia
[3] Univ Sydney, Charles Perkins Centre, Kidney Node, Camperdown, NSW, Australia
[4] Royal Prince Alfred Hosp, Renal Med, Camperdown, NSW, Australia
[5] Univ Sydney, Psychooncol Cooperat Res Grp, Sydney, NSW, Australia
[6] Univ Sydney, Centre Med Psychol & Evidence, based Decis, making, Sydney, NSW, Australia
[7] Flinders Univ S Australia, Coll Med, Publ Hlth, Adelaide, SA, Australia
[8] Monash Univ, Centre Inflammatory Dis,Dept Med,Dept Nephrol, Monash Hlth, Melbourne, Vic, Australia
[9] Univ Sydney, Sydney Sch Publ Hlth, Sydney, NSW, Australia
基金
英国医学研究理事会;
关键词
kidney transplantation; live donor; qualitative research; BREAKING BAD-NEWS; DONORS; DISEASE;
D O I
10.1111/nep.13628
中图分类号
R5 [内科学]; R69 [泌尿科学(泌尿生殖系疾病)];
学科分类号
1002 ; 100201 ;
摘要
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.
引用
收藏
页码:339 / 350
页数:12
相关论文
共 31 条
[11]   The Lived Experience of "Being Evaluated" for Organ Donation [J].
Hanson, Camilla S. ;
Ralph, Angelique F. ;
Manera, Karine E. ;
Gill, John S. ;
Kanellis, John ;
Wong, Germaine ;
Craig, Jonathan C. ;
Chapman, Jeremy R. ;
Tong, Allison .
CLINICAL JOURNAL OF THE AMERICAN SOCIETY OF NEPHROLOGY, 2017, 12 (11) :1852-1861
[12]   Fortuitous benefits of living kidney donation: Diagnosis of serious medical conditions during the living donor evaluation [J].
Hoffman, Arika ;
Tendulkar, Ketki ;
Merani, Shaheed ;
Maskin, Alexander ;
Langnas, Alan .
CLINICAL TRANSPLANTATION, 2018, 32 (03)
[13]   KDIGO Clinical Practice Guideline on the Evaluation and Care of Living Kidney Donors [J].
Lentine, Krista L. ;
Kasiske, Bertram L. ;
Levey, Andrew S. ;
Adams, Patricia L. ;
Alberu, Josefina ;
Bakr, Mohamed A. ;
Gallon, Lorenzo ;
Garvey, Catherine A. ;
Guleria, Sandeep ;
Li, Philip Kam-Tao ;
Segev, Dorry L. ;
Taler, Sandra J. ;
Tanabe, Kazunari ;
Wright, Linda ;
Zeier, Martin G. ;
Cheung, Michael ;
Garg, Amit X. .
TRANSPLANTATION, 2017, 101 :S7-S109
[14]   Racial disparities in living kidney donation: Is there a lack of willing donors or an excess of medically unsuitable candidates? [J].
Lunsford, Shayna L. ;
Simpson, Kit S. ;
Chavin, Kenneth D. ;
Menching, Kerry J. ;
Miles, Lucia G. ;
Shilling, Lilless M. ;
Smalls, Gilbert R. ;
Baliga, Prabhakar K. .
TRANSPLANTATION, 2006, 82 (07) :876-881
[15]   Evaluation of living kidney donors: variables that affect donation [J].
Moore, Deonna R. ;
Feurer, Irene D. ;
Zaydfudim, Victor ;
Hoy, Haley ;
Zavala, Edward Y. ;
Shaffer, David ;
Schaefer, Heidi ;
Moore, Derek E. .
PROGRESS IN TRANSPLANTATION, 2012, 22 (04) :385-392
[16]   Transition from donor candidates to live kidney donors: the impact of race and undiagnosed medical disease states [J].
Norman, Silas P. ;
Song, Peter X. K. ;
Hu, Youna ;
Ojo, Akinlolu O. .
CLINICAL TRANSPLANTATION, 2011, 25 (01) :136-145
[17]   Motivation for living-donor liver transplantation from the donor's perspective: An in-depth qualitative research study [J].
Papachristou, C ;
Walter, M ;
Dietrich, K ;
Danzer, G ;
Klupp, J ;
Klapp, BF ;
Frommer, J .
TRANSPLANTATION, 2004, 78 (10) :1506-1514
[18]   Evaluating potential live-renal donors: Causes for rejection, deferral and planned procedure type, a single-centre experience [J].
Perlis, Nathan ;
Connelly, Maureen ;
Honey, John R. D'A ;
Pace, Kenneth T. ;
Stewart, Robert .
CUAJ-CANADIAN UROLOGICAL ASSOCIATION JOURNAL, 2013, 7 (1-2) :41-45
[19]  
Rabow MW, 1999, WESTERN J MED, V171, P260
[20]   Considering Tangible Benefit for Interdependent Donors: Extending a Risk-Benefit Framework in Donor Selection [J].
Rasmussen, S. E. Van Pilsum ;
Henderson, M. L. ;
Kahn, J. ;
Segev, D. .
AMERICAN JOURNAL OF TRANSPLANTATION, 2017, 17 (10) :2567-2571