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Experiences and Management of People With a Failing Kidney Transplant: Findings From the IN-FAKT Study.

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Τίτλος: Experiences and Management of People With a Failing Kidney Transplant: Findings From the IN-FAKT Study.
Συγγραφείς: Venter B; Population Health Sciences, Bristol Medical School, University of Bristol, Bristol., Noyes J; School of Health Sciences and Wales Kidney Research Unit, Bangor University, Bangor., Selman LE; Population Health Sciences, Bristol Medical School, University of Bristol, Bristol., Exley C; Population Health Sciences Institute, Newcastle University, Newcastle., Griffin S; University Hospital of Wales and Wales Kidney Research Unit, Cardiff and Vale University Health Board, Cardiff., Hancock A; Patient Co-investigator Bristol United Kingdom., McLaughlin L; School of Health Sciences and Wales Kidney Research Unit, Bangor University, Bangor., Hole B; Population Health Sciences, Bristol Medical School, University of Bristol, Bristol; North Bristol NHS Trust, Bristol, United Kingdom., Bailey PK; Population Health Sciences, Bristol Medical School, University of Bristol, Bristol; North Bristol NHS Trust, Bristol, United Kingdom. Electronic address: pippa.bailey@bristol.ac.uk.
Πηγή: American journal of kidney diseases : the official journal of the National Kidney Foundation [Am J Kidney Dis] 2026 Jun; Vol. 87 (6), pp. 775-787.e1. Date of Electronic Publication: 2026 Mar 23.
Τύπος έκδοσης: Journal Article; Multicenter Study
Γλώσσα: English
Στοιχεία περιοδικού: Publisher: W.B. Saunders Country of Publication: United States NLM ID: 8110075 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1523-6838 (Electronic) Linking ISSN: 02726386 NLM ISO Abbreviation: Am J Kidney Dis Subsets: MEDLINE
Imprint Name(s): Publication: Philadelphia Pa : W.B. Saunders
Original Publication: New York, N.Y. : Grune & Stratton, c1981-
Ιατρικοί όροι (MeSH): Kidney Transplantation*/psychology , Kidney Failure, Chronic*/surgery , Kidney Failure, Chronic*/psychology, Humans ; Female ; Male ; Adult ; Middle Aged ; Treatment Failure ; Qualitative Research ; Quality of Life ; Aged ; United Kingdom
Περίληψη: Rationale & Objective: Transplant failure is associated with a morbidity burden, increased mortality, and poor quality of life. We have a limited understanding of how patients prepare for transplant failure, when they do so, and what experiences and priorities are relevant to clinical management decisions when transplants are failing. This study investigated the experiences of living with and managing kidney transplant failure among patients, families and friends, and health care professionals (HCPs).
Study Design: Qualitative semistructured interview study.
Setting & Participants: Three groups of adults sampled from 3 UK hospitals: (1) people with a failing kidney transplant or one that had failed in the last year; (2) family/friends of group 1; (3) kidney transplant HCPs.
Analytical Approach: Inductive analysis based in constructivist grounded theory.
Results: We interviewed 41 participants (15 people with failing/failed transplants, 9 family/friends, 17 HCPs). We identified 8 theoretical categories under 3 headings. First, the experience of waiting: (1) a constant threat: anticipation of failure; (2) lack of preparedness; (3) liminality: an indeterminate and in-between state. Second, shaping conversations about failing transplants: (4) navigating uncertainty; (5) responsibility and control; (6) failing to acknowledge failure: the elephant in the room. Third, the focus on the failing transplant: (7) maximizing mileage and missed opportunities; (8) the ripple effect of failure and family suffering. "Duality" emerged as the core category to describe findings that appeared to be in opposition but were experienced or delivered simultaneously. Patients experienced failure as both an inevitability and a surprise, and they felt both responsible for and as having no control over the transplant outcome. HCPs identified a need for parallel planning: simultaneously prolonging transplant survival and planning posttransplant treatment.
Limitations: Adult participants only.
Conclusions: Our study identified targets for improving the experiences of people with transplant failure, related to explicit communication, navigating uncertainty, and parallel planning.
Plain-Language Summary: We interviewed people who were experiencing or had experienced kidney transplant failure, their family and friends, and health care professionals (HCPs) about their experiences of living with and managing this failure. Patients described transplant failure as a constant threat, but they did not feel prepared for it. Patients and their families have many questions including: When will the transplant fail? How will it happen? Why did it fail? HCPs are unable to fully answer these questions, and patients feel responsible for what happens to their transplant. Our research shows that talking about transplant failure is difficult for patients and HCPs and that there are missed opportunities to prepare and support people.
(Copyright © 2026 The Author(s). Published by Elsevier Inc. All rights reserved.)
Contributed Indexing: Keywords: Patient-centered care; kidney transplant; patient perspectives; qualitative research; transplant failure
Entry Date(s): Date Created: 20260325 Date Completed: 20260713 Latest Revision: 20260814
Update Code: 20260814
DOI: 10.1053/j.ajkd.2026.01.009
PMID: 41881383
Βάση Δεδομένων: MEDLINE
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  Label: Title
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  Data: Experiences and Management of People With a Failing Kidney Transplant: Findings From the IN-FAKT Study.
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  Data: <searchLink fieldCode="AU" term="%22Venter+B%22">Venter B</searchLink>; Population Health Sciences, Bristol Medical School, University of Bristol, Bristol.<br /><searchLink fieldCode="AU" term="%22Noyes+J%22">Noyes J</searchLink>; School of Health Sciences and Wales Kidney Research Unit, Bangor University, Bangor.<br /><searchLink fieldCode="AU" term="%22Selman+LE%22">Selman LE</searchLink>; Population Health Sciences, Bristol Medical School, University of Bristol, Bristol.<br /><searchLink fieldCode="AU" term="%22Exley+C%22">Exley C</searchLink>; Population Health Sciences Institute, Newcastle University, Newcastle.<br /><searchLink fieldCode="AU" term="%22Griffin+S%22">Griffin S</searchLink>; University Hospital of Wales and Wales Kidney Research Unit, Cardiff and Vale University Health Board, Cardiff.<br /><searchLink fieldCode="AU" term="%22Hancock+A%22">Hancock A</searchLink>; Patient Co-investigator Bristol United Kingdom.<br /><searchLink fieldCode="AU" term="%22McLaughlin+L%22">McLaughlin L</searchLink>; School of Health Sciences and Wales Kidney Research Unit, Bangor University, Bangor.<br /><searchLink fieldCode="AU" term="%22Hole+B%22">Hole B</searchLink>; Population Health Sciences, Bristol Medical School, University of Bristol, Bristol; North Bristol NHS Trust, Bristol, United Kingdom.<br /><searchLink fieldCode="AU" term="%22Bailey+PK%22">Bailey PK</searchLink>; Population Health Sciences, Bristol Medical School, University of Bristol, Bristol; North Bristol NHS Trust, Bristol, United Kingdom. Electronic address: pippa.bailey@bristol.ac.uk.
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  Data: <searchLink fieldCode="JN" term="%228110075%22">American journal of kidney diseases : the official journal of the National Kidney Foundation</searchLink> [Am J Kidney Dis] 2026 Jun; Vol. 87 (6), pp. 775-787.e1. <i>Date of Electronic Publication: </i>2026 Mar 23.
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  Data: <i>Publisher: </i><searchLink fieldCode="PB" term="%22W%2EB%2E+Saunders%22">W.B. Saunders </searchLink><i>Country of Publication: </i>United States <i>NLM ID: </i>8110075 <i>Publication Model: </i>Print-Electronic <i>Cited Medium: </i>Internet <i>ISSN: </i>1523-6838 (Electronic) <i>Linking ISSN: </i><searchLink fieldCode="IS" term="%2202726386%22">02726386 </searchLink><i>NLM ISO Abbreviation: </i>Am J Kidney Dis <i>Subsets: </i>MEDLINE
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  Data: <searchLink fieldCode="MM" term="%22Kidney+Transplantation%22">Kidney Transplantation*</searchLink>/<searchLink fieldCode="MM" term="%22Kidney+Transplantation+psychology%22">psychology</searchLink> <br /><searchLink fieldCode="MM" term="%22Kidney+Failure%2C+Chronic%22">Kidney Failure, Chronic*</searchLink>/<searchLink fieldCode="MM" term="%22Kidney+Failure%2C+Chronic+surgery%22">surgery</searchLink> <br /><searchLink fieldCode="MM" term="%22Kidney+Failure%2C+Chronic%22">Kidney Failure, Chronic*</searchLink>/<searchLink fieldCode="MM" term="%22Kidney+Failure%2C+Chronic+psychology%22">psychology</searchLink><br /><searchLink fieldCode="MH" term="%22Humans%22">Humans</searchLink> ; <searchLink fieldCode="MH" term="%22Female%22">Female</searchLink> ; <searchLink fieldCode="MH" term="%22Male%22">Male</searchLink> ; <searchLink fieldCode="MH" term="%22Adult%22">Adult</searchLink> ; <searchLink fieldCode="MH" term="%22Middle+Aged%22">Middle Aged</searchLink> ; <searchLink fieldCode="MH" term="%22Treatment+Failure%22">Treatment Failure</searchLink> ; <searchLink fieldCode="MH" term="%22Qualitative+Research%22">Qualitative Research</searchLink> ; <searchLink fieldCode="MH" term="%22Quality+of+Life%22">Quality of Life</searchLink> ; <searchLink fieldCode="MH" term="%22Aged%22">Aged</searchLink> ; <searchLink fieldCode="MH" term="%22United+Kingdom%22">United Kingdom</searchLink>
– Name: Abstract
  Label: Abstract
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  Data: Rationale & Objective: Transplant failure is associated with a morbidity burden, increased mortality, and poor quality of life. We have a limited understanding of how patients prepare for transplant failure, when they do so, and what experiences and priorities are relevant to clinical management decisions when transplants are failing. This study investigated the experiences of living with and managing kidney transplant failure among patients, families and friends, and health care professionals (HCPs).<br />Study Design: Qualitative semistructured interview study.<br />Setting & Participants: Three groups of adults sampled from 3 UK hospitals: (1) people with a failing kidney transplant or one that had failed in the last year; (2) family/friends of group 1; (3) kidney transplant HCPs.<br />Analytical Approach: Inductive analysis based in constructivist grounded theory.<br />Results: We interviewed 41 participants (15 people with failing/failed transplants, 9 family/friends, 17 HCPs). We identified 8 theoretical categories under 3 headings. First, the experience of waiting: (1) a constant threat: anticipation of failure; (2) lack of preparedness; (3) liminality: an indeterminate and in-between state. Second, shaping conversations about failing transplants: (4) navigating uncertainty; (5) responsibility and control; (6) failing to acknowledge failure: the elephant in the room. Third, the focus on the failing transplant: (7) maximizing mileage and missed opportunities; (8) the ripple effect of failure and family suffering. "Duality" emerged as the core category to describe findings that appeared to be in opposition but were experienced or delivered simultaneously. Patients experienced failure as both an inevitability and a surprise, and they felt both responsible for and as having no control over the transplant outcome. HCPs identified a need for parallel planning: simultaneously prolonging transplant survival and planning posttransplant treatment.<br />Limitations: Adult participants only.<br />Conclusions: Our study identified targets for improving the experiences of people with transplant failure, related to explicit communication, navigating uncertainty, and parallel planning.<br />Plain-Language Summary: We interviewed people who were experiencing or had experienced kidney transplant failure, their family and friends, and health care professionals (HCPs) about their experiences of living with and managing this failure. Patients described transplant failure as a constant threat, but they did not feel prepared for it. Patients and their families have many questions including: When will the transplant fail? How will it happen? Why did it fail? HCPs are unable to fully answer these questions, and patients feel responsible for what happens to their transplant. Our research shows that talking about transplant failure is difficult for patients and HCPs and that there are missed opportunities to prepare and support people.<br /> (Copyright © 2026 The Author(s). Published by Elsevier Inc. All rights reserved.)
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