Narrating Kidney Disease: The Significance Of Sensation And Time In The Emplotment Of Patient Experience

Kierans, Ciara

doi:10.1007/s11013-005-9171-8

Cited by 56 publications

(46 citation statements)

References 23 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…[67][68][69][70][71][72] It is imperative that if new heath-care technologies, such as EVLP, are to be implemented successfully and achieve real benefits for patients, the views of those receiving them are taken into account. This substudy critically examined patients' attitudes towards, and understanding of, EVLP; their reasons for participation in the DEVELOP-UK study; and their experiences of waiting for and receiving a transplant.…”

Section: Introductionmentioning

confidence: 99%

An observational study of Donor Ex Vivo Lung Perfusion in UK lung transplantation: DEVELOP-UK

Fisher

Andreasson

Chrysos

et al. 2016

Health Technol Assess

117

115

View full text Add to dashboard Cite

BackgroundMany patients awaiting lung transplantation die before a donor organ becomes available. Ex vivo lung perfusion (EVLP) allows initially unusable donor lungs to be assessed and reconditioned for clinical use.ObjectiveThe objective of the Donor Ex Vivo Lung Perfusion in UK lung transplantation study was to evaluate the clinical effectiveness and cost-effectiveness of EVLP in increasing UK lung transplant activity.DesignA multicentre, unblinded, non-randomised, non-inferiority observational study to compare transplant outcomes between EVLP-assessed and standard donor lungs.SettingMulticentre study involving all five UK officially designated NHS adult lung transplant centres.ParticipantsPatients aged ≥ 18 years with advanced lung disease accepted onto the lung transplant waiting list.InterventionThe study intervention was EVLP assessment of donor lungs before determining suitability for transplantation.Main outcome measuresThe primary outcome measure was survival during the first 12 months following lung transplantation. Secondary outcome measures were patient-centred outcomes that are influenced by the effectiveness of lung transplantation and that contribute to the health-care costs.ResultsLungs from 53 donors unsuitable for standard transplant were assessed with EVLP, of which 18 (34%) were subsequently transplanted. A total of 184 participants received standard donor lungs. Owing to the early closure of the study, a non-inferiority analysis was not conducted. The Kaplan–Meier estimate of survival at 12 months was 0.67 [95% confidence interval (CI) 0.40 to 0.83] for the EVLP arm and 0.80 (95% CI 0.74 to 0.85) for the standard arm. The hazard ratio for overall 12-month survival in the EVLP arm relative to the standard arm was 1.96 (95% CI 0.83 to 4.67). Patients in the EVLP arm required ventilation for a longer period and stayed longer in an intensive therapy unit (ITU) than patients in the standard arm, but duration of overall hospital stay was similar in both groups. There was a higher rate of very early grade 3 primary graft dysfunction (PGD) in the EVLP arm, but rates of PGD did not differ between groups after 72 hours. The requirement for extracorporeal membrane oxygenation (ECMO) support was higher in the EVLP arm (7/18, 38.8%) than in the standard arm (6/184, 3.2%). There were no major differences in rates of chest radiograph abnormalities, infection, lung function or rejection by 12 months. The cost of EVLP transplants is approximately £35,000 higher than the cost of standard transplants, as a result of the cost of the EVLP procedure, and the increased ECMO use and ITU stay. Predictors of cost were quality of life on joining the waiting list, type of transplant and number of lungs transplanted. An exploratory model comparing a NHS lung transplant service that includes EVLP and standard lung transplants with one including only standard lung transplants resulted in an incremental cost-effectiveness ratio of £73,000. Interviews showed that patients had a good understanding of the need for, and the processes of, EVLP. If EVLP can increase the number of usable donor lungs and reduce waiting, it is likely to be acceptable to those waiting for lung transplantation. Study limitations include small numbers in the EVLP arm, limiting analysis to descriptive statistics and the EVLP protocol change during the study.ConclusionsOverall, one-third of donor lungs subjected to EVLP were deemed suitable for transplant. Estimated survival over 12 months was lower than in the standard group, but the data were also consistent with no difference in survival between groups. Patients receiving these additional transplants experience a higher rate of early graft injury and need for unplanned ECMO support, at increased cost. The small number of participants in the EVLP arm because of early study termination limits the robustness of these conclusions. The reason for the increased PGD rates, high ECMO requirement and possible differences in lung injury between EVLP protocols needs evaluation.Trial registrationCurrent Controlled Trials ISRCTN44922411.FundingThis project was funded by the NIHR Health Technology Assessment programme and will be published in full inHealth Technology Assessment; Vol. 20, No. 85. See the NIHR Journals Library website for further project information.

show abstract

Section: Introductionmentioning

confidence: 99%

An observational study of Donor Ex Vivo Lung Perfusion in UK lung transplantation: DEVELOP-UK

Fisher

Andreasson

Chrysos

et al. 2016

Health Technol Assess

117

115

View full text Add to dashboard Cite

show abstract

“…Fato esse que acarretou na presença do sentimento de posse do órgão transplantado. Outro participante afirmou que ficou deprimido, isolado e solitário (29), o que se assemelha às manifestações de tristeza por um entrevistado deste estudo.…”

Section: Discussionunclassified

Transplante renal: análise comportamental a partir da Técnica dos Incidentes Críticos

et al. 2016

View full text Add to dashboard Cite

Objetivo: identificar os comportamentos das pessoas com o transplante renal empregando a Técnica dos Incidentes Críticos. Método: estudo com abordagem qualitativa do tipo descritivo utilizando a Técnica dos Incidentes Críticos. Os dados foram coletados por meio de entrevista semiestruturada e foram relacionados o perfil socioeconômico dos entrevistados e os incidentes críticos identificados. Fizeram parte do estudo 20 pessoas, dez homens e dez mulheres. Resultados: os resultados apontaram a ocorrência de 141 comportamentos, 108 positivos e 33 negativos, relacionados ao cuidado adotado à saúde, às atividades cotidianas e à vida com o transplante renal. Conclusões: a aplicação da Técnica dos Incidentes Críticos permitiu obter dados sobre o modo como o transplante renal influencia determinados comportamentos, positiva e negativamente, na vida da pessoa.

show abstract

“…Nell'insufficienza renale, una moltitudine di singoli eventi e istanze fanno sì che l'esperienza di malattia venga trasformata e resa significativa per i pazienti. Interventi ed esami medici, secondo alcuni autori, hanno la capacità di minacciare il sé incarnato, il senso di unicità organica, dando luogo a processi di "disincarnazione" e pratiche di "disumanizzazione" (6). Ciò conduce al traguardo finale del corpo cyborg, che tuttavia, può essere sperimentato come un nuovo modo di estendere i confini delle forme di realizzazione possibili.…”

Section: Il Corpo Come Mediatoreunclassified

“…Ciò conduce al traguardo finale del corpo cyborg, che tuttavia, può essere sperimentato come un nuovo modo di estendere i confini delle forme di realizzazione possibili. Donna Haraway evoca una visione del futuro in cui "... un mondo cyborg esprime l'effetto di una realtà sociale in cui le persone non hanno paura della loro parentela con animali e macchine, non hanno paura di identità permanenti o parziali e punti di vista contraddittori" (6). L'elevata medicalizzazione e tecnicizzazione dell'assistenza e della cura, caratteristiche di questo tipo di malattia inducono una riflessione su questo concetto, che seppur in apparenza lontano dalla realtà ne esprime tutta la particolare complessità.…”

Section: Il Corpo Come Mediatoreunclassified

Strategies and effectiveness of narrative medicine in renal patients: a literature review. Part 1

Mettifogo

Burrai

Dorigo

et al. 2017

Giornale di Tecniche Nefrologiche e Dialitiche

View full text Add to dashboard Cite

Strategies and effectiveness of narrative medicine in renal patients: a literature review. Part 1 Introduction: This paper on narrative-based medicine (NBM) is divided into two articles. The concept of NBM has been developed over the last decades to bring the biomedical aspects of illness and treatment closer to the psychosocial aspects and life experiences related to illness. Purpose: To identify and summarize the evidence and concepts of NBM in nephrology. Methods: Review of studies based on a literature search in 6 databases. Results: Thirty-five papers were included in the review, none of which were quantitative. Discussion: The narrative approach applied to a nephrology context seeks to shed light on the life experiences related to kidney disease by collecting, through structured and semistructured interviews, stories from patients, caregivers and health care providers. Some of the main topics emerging in the first article are the lack of a "disease identity" that allows patients to identify with the specific status of kidney disease; uncertainty as a dominant feature of living with an illness characterized by continuous progression and regression; the "unspeakable", referring to all those aspects for which there is no room for expression in the care relationship, such as living with the risk of dying, experiences that are difficult to put into words, and everything related to mystery, faith and the inexplicable. Conclusions: This review shows the importance of exploring the disturbing aspects of life for patients with chronic renal failure. Knowledge of these aspects can help health care providers improve the quality and effectiveness of the therapeutic relationship and ensure that the patient will not feel isolated but at the center of the care process. Narrative medicine, as will be highlighted in the second article, is also aimed at health care providers in order to investigate their experiences, which are often characterized by situations of suffering and discomfort. The narrative approach in nephrology could be supported by further research into the therapeutic abilities of narration in the care relationship. Keywords: Narration, Narrative medicine, Narrative nursing Indirizzo per la corrispondenza: Mariangela Mettifogo Dipartimento di Nefrologia, Dialisi e Trapianto renale Ospedlae San Bortolo -ULSS 8 Berica Viale Rodolfi, 37 -36100 Vicenza mariangela.mettifogo@gmail.com rizzano l'orientamento. Nei primi studi ermeneutico-fenomenologici, la medicina è stata considerata un sistema culturale i cui significati simbolici modellano il vissuto del malato (1), e la narrazione la modalità con cui la persona attribuisce significato agli eventi e si orienta rispetto alle azioni e alle scelte da intraprendere. Secondo l'approccio ermeneutico la condivisione della pluralità dei significati che emergono dall'incontro tra sanitario e paziente può contribuire a una co-costruzione di senso dell'esperienza vissuta. La narrazione da parte del malato della propria storia e l'ascolto di chi si prende cura di lui, gli pe...

show abstract

Narrating Kidney Disease: The Significance Of Sensation And Time In The Emplotment Of Patient Experience

Cited by 56 publications

References 23 publications

An observational study of Donor Ex Vivo Lung Perfusion in UK lung transplantation: DEVELOP-UK

An observational study of Donor Ex Vivo Lung Perfusion in UK lung transplantation: DEVELOP-UK

Transplante renal: análise comportamental a partir da Técnica dos Incidentes Críticos

Strategies and effectiveness of narrative medicine in renal patients: a literature review. Part 1

Contact Info

Product

Resources

About