Perceptions of chronic kidney patients in the refusal of the kidney transplantation

Abstract

RESUMOObjetivo: conhecer os motivos que levam os pacientes com doença renal crônica a recusarem o transplante renal. Método: trata-se de estudo qualitativo, descritivo e exploratório realizado com 22 pacientes submetidos à hemodiálise em um Centro de Tratamento de Doenças Renais. Utilizou-se uma entrevista semiestruturada transcrita e submetida à Análise de Conteúdo na modalidade Análise Temática. Resultados: percebe-se que após a análise de conteúdo para a organização dos dados, emergiram as categorias “Sentimento de culpa por desejar a morte de alguém e preocupação com a vida do doador vivo”; “Implicações financeiras e demora na realização do transplante” e “Adaptação ao tratamento hemodialítico e as incertezas quanto ao transplante”. Conclusão: constatou-se que vários motivos influenciam a recusa para o transplante renal, como questões financeiras e burocráticas, o medo da cirurgia e do seu prognóstico influenciado pelo conhecimento de experiências negativas de pacientes transplantados, o medo justificado pela adaptação ao tratamento dialítico e a algumas comorbidades, bem como a culpa por desejar um órgão. Os profissionais de saúde têm papel fundamental no esclarecimento sobre o transplante para que esses pacientes tomem uma decisão consciente acerca do tratamento. Descritores: Listas de Espera; Transplante de Rim; Medo; Incerteza; Falência Renal Crônica; Transplante de Órgãos.ABSTRACT Objective: to learn the reasons that lead patients with chronic kidney disease to refuse kidney transplantation. Method: this is a qualitative, descriptive and exploratory study of 22 patients submitted to hemodialysis at a Center for the Treatment of Renal Diseases. A semi-structured interview was used, transcribed and submitted to Content Analysis in the Thematic Analysis modality. Results: it is noticed that after the content analysis for the organization of the data, the categories "Feeling guilty for wanting someone's death and concern for the life of the living donor" emerged; "Financial implications and delay in carrying out the transplant" and "Adaptation to hemodialysis treatment and uncertainties regarding transplantation". Conclusion: it was observed that several reasons influence the refusal for renal transplantation, such as financial and bureaucratic issues, fear of surgery and its prognosis influenced by the knowledge of negative experiences of transplanted patients, fear justified by adaptation to dialysis treatment and some comorbidities, as well as the guilt for wanting an organ. Health professionals play a key role in clarifying the transplant so that these patients make a conscious decision about the treatment. Descritores: Waiting Lists; Kidney Transplantation; Fear; Uncertainty; Kidney Failure Chronic; Organ Transplantation.RESUMEN Objetivo: conocer los motivos que llevan a los pacientes con enfermedad renal crónica a rechazar el trasplante renal. Método: se trata de un estudio cualitativo, descriptivo y exploratorio realizado con 22 pacientes sometidos a la hemodiálisis en un Centro de Tratamiento de Enfermedades Renales. Se utilizó una entrevista semiestructurada transcrita y sometida al Análisis de Contenido en la modalidad Análisis Temático. Resultados: se percibe que después del análisis de contenido para la organización de los datos, emergieron las categorías "Sentimiento de culpa por desear la muerte de alguien y preocupación por la vida del donante vivo"; "Implicaciones financieras y demora en la realización del trasplante" y "Adaptación al tratamiento hemodialítico y las incertidumbres en cuanto al trasplante". Conclusión: se constató que varios motivos influencian la negativa para el trasplante renal, como cuestiones financieras y burocráticas, el miedo a la cirugía y su pronóstico influenciado por el conocimiento de experiencias negativas de pacientes trasplantados, el miedo justificado por la adaptación al tratamiento dialítico y a algunas comorbilidades, así como la culpa por desear un órgano. Los profesionales de la salud desempeñan un papel fundamental en la aclaración del trasplante para que estos pacientes tomen una decisión consciente sobre el tratamiento. Descritores: Listas de Espera; Trasplante de Riñón; Medo; Incertidumbre; Fallo Renal Crónico; Trasplante de Órganos.

Understanding people’s decisions when choosing or declining a kidney transplant: a qualitative evidence synthesis

“…In studies where there were higher numbers of patients in ethnic minority groups,34 37–43 patients lacked shared decision-making and often had a poorer understanding of the alternative kidney replacement options.…”

“…Insufficient medical insurance coverage disadvantaged those with low incomes living in America, South Korea and Brazil, who were unable to afford time off work for transplant tests or get to hospital appointments 34 37 38 42 43 49 55 59–62. Lack of access to interpreters also created barriers.…”

“…Many patients waiting for a deceased donor kidney transplant were ambivalent. They had mixed feelings and internal conflict desiring a kidney transplant while simultaneously feeling they were hoping for someone else to die to receive ‘their’ kidney 41 43 51 54 62 65 66…”

“…Overwhelmingly, patients reported they were fearful of death, not waking from general anaesthetic and post-transplant-related complications (cancer and diabetes); they also feared no health improvements and poorer quality of life 37 40 42–44 46–48 53 61–63 69…”

Differential Willingness to Pay for Kidney Transplantation From Living and Deceased Donors: Empirical Study Among End-Stage Kidney Disease (ESKD) Patients

“…Although we might expect that the more side-effects a person experiences from dialysis treatment and the more they suffer from this treatment, the more likely they are to want a kidney transplant and be willing to pay more for it, research shows that choosing to undergo kidney transplantation depends on the perceptions held by dialysis patients regarding its potential outcome. 97 , 98 One may conclude from this that people with bad experiences with dialysis, who probably have comorbidities associated with end-stage kidney disease, might be afraid to undergo kidney transplantation since they assume that certain comorbidities interfere with the surgical treatment or prognosis. People who have difficulties with dialysis will tend to fear complications, rejection of the graft, and even death 96 since they may see themselves as are more sensitive and fragile.…”