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

被引:10
|
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 50 条
  • [11] THE IMPACT OF IBD FATIGUE ON HEALTH-RELATED QUALITY OF LIFE: A QUALITATIVE SEMI-STRUCTURED INTERVIEW STUDY
    Radford, Shellie
    Czuber-Dochan, Wladyslawa
    Moran, Gordon W.
    GUT, 2021, 70 : A113 - A113
  • [12] Correction to: Ethical Perspectives of Japanese Engineers on Ambient Assisted Living Technologies: Semi-structured Interview
    Jungen Koimizu
    Minori Kokado
    Kazuto Kato
    Asian Bioethics Review, 2019, 11 : 125 - 126
  • [13] Patient and caregiver values, beliefs and experiences when considering home dialysis as a treatment option: a semi-structured interview study
    Walker, Rachael C.
    Howard, Kirsten
    Morton, Rachael L.
    Palmer, Suetonia C.
    Marshall, Mark R.
    Tong, Allison
    NEPHROLOGY DIALYSIS TRANSPLANTATION, 2016, 31 (01) : 133 - 141
  • [14] Increasing sharp safety device use in healthcare: A semi-structured interview study
    Stringer, Bernadette
    Astrakianakis, George
    Haines, Ted
    CONTEMPORARY NURSE, 2013, 44 (02) : 144 - 155
  • [15] Sleep disturbances in people with depression: A semi-structured interview study of treatment methods and patients' experiences within psychiatric practice
    Moesgaard, Catrine
    Hjorth, Peter
    JOURNAL OF SLEEP RESEARCH, 2024, 33
  • [16] The Experience of Indonesian Men Living with Type-2 Diabetes Mellitus and Erectile Dysfunction: A Semi-structured Interview Study
    Setho Hadisuyatmana
    Ferry Efendi
    Eka Mishbahatul Marah Has
    Sylvia Dwi Wahyuni
    Michael Bauer
    James H. Boyd
    Sonia Reisenhofer
    Sexuality and Disability, 2021, 39 : 245 - 260
  • [17] The Experience of Indonesian Men Living with Type-2 Diabetes Mellitus and Erectile Dysfunction: A Semi-structured Interview Study
    Hadisuyatmana, Setho
    Efendi, Ferry
    Has, Eka Mishbahatul Marah
    Wahyuni, Sylvia Dwi
    Bauer, Michael
    Boyd, James H.
    Reisenhofer, Sonia
    SEXUALITY AND DISABILITY, 2021, 39 (02) : 245 - 260
  • [18] NEPHROLOGISTS' PERSPECTIVES ON THE INFLUENCE OF GUIDELINES IN CLINICAL DECISION MAKING: A SEMI-STRUCTURED INTERVIEW STUDY
    Irving, M. J.
    Tong, A.
    Rychetnik, L.
    Walker, R. G.
    Frommer, M. S.
    Craig, J. C.
    NEPHROLOGY, 2009, 14 : A10 - A11
  • [19] Assessment of the patients' spiritual needs: A phase I study with the semi-structured interview SPIR
    Riedner, C
    Biechele, I
    Froer, P
    Borasio, GD
    Frick, E
    PSYCHO-ONCOLOGY, 2004, 13 (08) : S109 - S110
  • [20] Utilising out-of-hours primary care for assistance with cancer pain: a semi-structured interview study of patient and caregiver experiences
    Adam, Rosalind
    Clausen, Maria Giatsi
    Hall, Susan
    Murchie, Peter
    BRITISH JOURNAL OF GENERAL PRACTICE, 2015, 65 (640): : E754 - E760