This thesis investigates the role of Canadians in the international trade in human organs and the factors influencing patient decision making, assuming that patients make decisions regarding the management of their illness in a complex social, cultural, political and economic nexus. It engages a broad theoretical question of whether Canadians uphold values consistent with a commitment to consumerism, commodifying organs as needed and afforded, or altruism, supportive of voluntary organ donation systems. Semi-structured interviews were conducted with hemodialysis patients and their care givers in a southern Ontario hospital. Based on this analysis, Canadians appear to fall somewhere in the middle of the consumer-altruist divide. The dominant sentiment among participants was that Canadians ought not to be commodified, but the organs of foreign others in places removed from the Canadian value system hold potential, and provide opportunities for participating in a market when the supply of organs falls short of demand.

This work represents a significant contribution to the body of knowledge in the area of renal transplantation as it brings together the research related to policy analysis, empirical research, and cultural and religious issues related to organ donation and transplantation among South Asians in the UK. The candidate's work in this area is the first in the UK to systematically document and map a national picture of kidney transplant waiting lists and to identify and examine the complex reasons underlying how and why patient ethnicity impacts upon the likelihood of receiving a kidney transplant. The candidate has also developed a new evidence-base exploring the adequacies of the existing procurement arrangements and the implications of introducing any alternative policies within the context of a multi-ethnic and multifaith UK. Finally, the candidate's work has focused on developing an evidence-base of the public perceptions, attitudes, and religious viewpoints towards organ donation and transplantation among a cross-section ofthe South Asian population. The candidate's published works have been the foundation blocks for stimulating and informing the debate on the provision of renal transplant services for minority ethnic groups through the generation of an empirical evidence-base in a subject area which has traditionally relied upon anecdotal evidence. The evidence-base illuminates a very complex issue which has multi-faceted solutions that need to be addressed in different settings.

The worldwide organ shortage occurs despite people’s positive organ donation attitudes. The discrepancy between attitudes and behaviour is evident in Australia particularly, with widespread public support for organ donation but low donation and communication rates. This problem is compounded further by the paucity of theoretically based research to improve our understanding of people’s organ donation decisions. This program of research contributes to our knowledge of individual decision making processes for three aspects of organ donation: (1) posthumous (upon death) donation, (2) living donation (to a known and unknown recipient), and (3) providing consent for donation by communicating donation wishes on an organ donor consent register (registering) and discussing the donation decision with significant others (discussing). The research program used extended versions of the Theory of Planned Behaviour (TPB) and the Prototype/Willingness Model (PWM), incorporating additional influences (moral norm, self-identity, organ recipient prototypes), to explicate the relationship between people’s positive attitudes and low rates of organ donation behaviours. Adopting the TPB and PWM (and their extensions) as a theoretical basis overcomes several key limitations of the extant organ donation literature including the often atheoretical nature of organ donation research, thefocus on individual difference factors to construct organ donor profiles and the omission of important psychosocial influences (e.g., control perceptions, moral values) that may impact on people’s decision-making in this context. In addition, the use of the TPB and PWM adds further to our understanding of the decision making process for communicating organ donation wishes. Specifically, the extent to which people’s registering and discussing decisions may be explained by a reasoned and/or a reactive decision making pathway is examined (Stage 3) with the novel application of the TPB augmented with the social reaction pathway in the PWM. This program of research was conducted in three discrete stages: a qualitative stage (Stage 1), a quantitative stage with extended models (Stage 2), and a quantitative stage with augmented models (Stage 3). The findings of the research program are reported in nine papers which are presented according to the three aspects of organ donation examined (posthumous donation, living donation, and providing consent for donation by registering or discussing the donation preference). Stage One of the research program comprised qualitative focus groups/interviews with university students and community members (N = 54) (Papers 1 and 2). Drawing broadly on the TPB framework (Paper 1), content analysed responses revealed people’s commonly held beliefs about the advantages and disadvantages (e.g., prolonging/saving life), important people or groups (e.g., family), and barriers and motivators (e.g., a family’s objection to donation), related to living and posthumous organ donation. Guided by a PWM perspective, Paper Two identified people’s commonly held perceptions of organ donors (e.g., altruistic and giving), non-donors (e.g., self-absorbed and unaware), and transplant recipients (e.g., unfortunate, and in some cases responsible/blameworthy for their predicament). Stage Two encompassed quantitative examinations of people’s decision makingfor living (Papers 3 and 4) and posthumous (Paper 5) organ donation, and for registering and discussing donation wishes (Papers 6 to 8) to test extensions to both the TPB and PWM. Comparisons of health students’ (N = 487) motivations and willingness for living related and anonymous donation (Paper 3) revealed that a person’s donor identity, attitude, past blood donation, and knowing a posthumous donor were four common determinants of willingness, with the results highlighting students’ identification as a living donor as an important motive. An extended PWM is presented in Papers Four and Five. University students’ (N = 284) willingness for living related and anonymous donation was tested in Paper Four with attitude, subjective norm, donor prototype similarity, and moral norm (but not donor prototype favourability) predicting students’ willingness to donate organs in both living situations. Students’ and community members’ (N = 471) posthumous organ donation willingness was assessed in Paper Five with attitude, subjective norm, past behaviour, moral norm, self-identity, and prior blood donation all significantly directly predicting posthumous donation willingness, with only an indirect role for organ donor prototype evaluations. The results of two studies examining people’s decisions to register and/or discuss their organ donation wishes are reported in Paper Six. People’s (N = 24) commonly held beliefs about communicating their organ donation wishes were explored initially in a TPB based qualitative elicitation study. The TPB belief determinants of intentions to register and discuss the donation preference were then assessed for people who had not previously communicated their donation wishes (N = 123). Behavioural and normative beliefs were important determinants of registering and discussing intentions; however, control beliefs influenced people’s registering intentions only. Paper Seven represented the first empirical test of the role of organ transplant recipient prototypes (i.e., perceptions of organ transplant recipients) in people’s (N = 465) decisions to register consent for organ donation. Two factors, Substance Use and Responsibility, were identified and Responsibility predicted people’s organ donor registration status. Results demonstrated that unregistered respondents were the most likely to evaluate transplant recipients negatively. Paper Eight established the role of organ donor prototype evaluations, within an extended TPB model, in predicting students’ and community members’ registering (n = 359) and discussing (n = 282) decisions. Results supported the utility of an extended TPB and suggested a role for donor prototype evaluations in predicting people’s discussing intentions only. Strong intentions to discuss donation wishes increased the likelihood that respondents reported discussing their decision 1-month later. Stage Three of the research program comprised an examination of augmented models (Paper 9). A test of the TPB augmented with elements from the social reaction pathway in the PWM, and extensions to these models was conducted to explore whether people’s registering (N = 339) and discussing (N = 315) decisions are explained via a reasoned (intention) and/or social reaction (willingness) pathway. Results suggested that people’s decisions to communicate their organ donation wishes may be better explained via the reasoned pathway, particularly for registering consent; however, discussing also involves reactive elements. Overall, the current research program represents an important step toward clarifying the relationship between people’s positive organ donation attitudes but low rates of organ donation and communication behaviours. Support has been demonstrated for the use of extensions to two complementary theories, the TPB and PWM, which can inform future research aiming to explicate further the organ donation attitude-behaviour relationship. The focus on a range of organ donation behaviours enables the identification of key targets for future interventions encouraging people’s posthumous and living donation decisions, and communication of their organ donation preference.

This thesis sought to improve our understanding of how kidneys become injured as a consequence of organ donation, with the aim of improving the outcomes of transplantation. Every year, hundreds of patients on the waiting list die whilst awaiting a kidney transplant. With an ever-increasing demand for suitable organs, supply cannot keep up with the pressures on the transplant waiting list. As a consequence the transplant community are forced to use organs that previously would not have been considered suitable for transplant, including from older donors with additional comorbidities. This thesis aimed to develop an understanding as to how the kidney becomes injured during the donation process, identifying which key cellular homeostatic processes are disturbed as a consequence of donation. The thesis outlines the experimental development of rodent models of organ donation replicating the donation process for donation after brain death (DBD) and donation after circulatory death (DCD) donors and also the development of a kidney ischaemia reperfusion injury (IRI) model. Proteomics was subsequently used to identifying global protein alterations in the kidney as a consequence of brain death and ischemia reperfusion injury using bioinformatics tools to identify involvement of cellular pathways. The results indicated alterations in mitochondrial function and metabolic homeostasis occurring following brain death. Alterations in cellular metabolism and mitochondrial function were then confirmed using metabolomics and mitochondrial functional assays. I subsequently evaluated how alterations in cellular hypoxia and the hypoxia inducible factor system is altered in the brain dead organ donor kidney and aimed to target this system as a means of conditioning the brain dead organ donor to prevent mitochondrial and metabolic mediated injury to kidney cells following brain death. This involved exploring the role of prolyl hydroxylase inhibitors, including dimethyloxalylglycine, on mitochondrial function and whether this could be a therapeutic target in organ donation. This thesis provides important insights into the mechanism of injury of kidneys following brain death, providing evidence that even before procurement and preservation in the DBD donor alterations in mitochondrial function and metabolic homeostasis occur. I provide preliminary data on the use of prolyl hydroxylase inhibitors in altering mitochondrial function. I also outline my involvement in other ongoing projects in organ donation and machine perfusion that also aim to improve the outcomes of deceased donor kidney and liver transplantation.

A possibilidade da substituição de órgãos e tecidos que estão comprometidos por outros que estão com suas funções vitais adequadas para o corpo humano, acontece por um principal objetivo, preservar a saúde do homem buscando maior sobrevida e principalmente proporcionando melhor qualidade de vida. O trabalho aborda o assunto doação de órgãos, onde será explorado o tema relacionando à percepção da família sobre morte encefálica e os impedimentos para a doação, tendo como principal objetivo conhecer as principais dificuldades e fatores que impedem os familiares de pacientes com morte encefálica autorizarem a doação de órgãos. Foram analisados 66 prontuários de prováveis doadores (pacientes com Morte encefálica), sendo 36 prontuários do ano de 2010 e 30 prontuários do ano de 2011. No entanto dos 66 prováveis doadores, foram doados os órgãos de apenas 16 pacientes, dos demais prováveis doadores (50 pacientes) não aconteceram as doações, houve recusa por parte da família, 46% alegaram que não tiveram informações sobre o que estava acontecendo, que houve pouco diálogo dos profissionais com a família e que principalmente o atendimento inicial na emergência não teve humanização. São muitas dúvidas que acometem as famílias em todo o processo, referente à morte encefálica, a liberação do corpo e outros questionamentos que surgem, porém quando os familiares são esclarecidos e informados pela equipe de saúde gera uma satisfação quanto ao atendimento prestado durante o período de internação do paciente, proporcionando assim um conforto às famílias e, consequentemente, auxiliando na diminuição da dor e do sofrimento. / The possibility of substituting organs and tissues which are damaged with others which have their vital functions working adequately for the human body, takes place for one main reason, to preserve the health of the person seeking a longer life and mainly to propitiate a better quality of life. This paper deals with the subject of organ donation, where the theme will be explored relating it to the family‟s perception of brain death and the impediments for donation, having as its main goal to get to know the main difficulties and factors which impede relatives of brain dead patients to authorize organ donation. 66 patient records of probable donors (brain dead patients) were analyzed, 36 of which were from the year 2010 and 30 from the year 2011. However, of the 66 likely donors, organs of only 16 patients were donated. There were no donations from the other probable donors (50 patients). The families refused. 46% alleged that they did not have information about what was happening, that there was little dialog of the professionals with the family and mainly, that the initial service in the emergency room was not humanized. Many doubts afflict the families in the whole process with regard to brain death, to liberating the body and other questions which arise. If the health team clarifies and informs the family adequately there will be greater satisfaction with regard to the service rendered during the patient‟s period of internment, propitiating comfort for the families and consequently helping to diminish the pain and suffering.

FERNANDES. Luciana Freitas. Histórias de doação de rim: explorando narrativas e repertórios interpretativos de doadores. 2011. 117 f. Dissertação (Mestrado em Psicologia) – Universidade Federal do Ceará, Departamento de Psicologia, Programa de Pós-Graduação em Psicologia, Fortaleza-CE, 2011. / Submitted by moises gomes (celtinha_malvado@hotmail.com) on 2012-03-09T17:31:46Z No. of bitstreams: 1 2011_dis_LFFernandes.PDF: 1314577 bytes, checksum: 66f5b1b7b38bf43a974004117821eaac (MD5) / Approved for entry into archive by Maria Josineide Góis(josineide@ufc.br) on 2012-03-14T14:32:59Z (GMT) No. of bitstreams: 1 2011_dis_LFFernandes.PDF: 1314577 bytes, checksum: 66f5b1b7b38bf43a974004117821eaac (MD5) / Made available in DSpace on 2012-03-14T14:32:59Z (GMT). No. of bitstreams: 1 2011_dis_LFFernandes.PDF: 1314577 bytes, checksum: 66f5b1b7b38bf43a974004117821eaac (MD5) Previous issue date: 2011 / Living organ donation has been considered an alternative to the shortage of organs for transplantation; as such it is part of medical procedures where we can see the intricate relationship between biotechnology and the process of meaning making in everyday life. This research discusses organ donation, understood as a social practice supported by a network of various human and non human actors. More specifically, our research focuses on narrative types and interpretative repertoires used by living kidney donors to build versions about organ donation. Interviews were conducted with three donors, two potential donors and three recipients at the kidney transplantation department of Hospital Universitário Walter Cantídio, in Fortaleza (CE-Brazil). The interviews were transcribed and analyzed in terms of narrative types and interpretative repertoires in use. Among the results, we can highlight the predominant use of restitution narratives to talk about kidney donation as an expedient to restore the recipient’s lost health. This finding shows the powerful discursive matrix, supported by biotechnology and contemporary Western medicine, which values health as a normal condition and establishes the need for repair in cases of illness. Among the arguments and metaphors used to build the donation, we highlight the act of love and gift of life, which compose the “language of gift”. The donor tends to be positioned as a brave, heroic person, whose altruism saves lives; while the organs to be donated are formulated as rare and valuable resources that must be recycled, specially in case of a close parent’s need. We conclude that the ways of telling stories of renal donation and the interpretive repertoires used in those narratives produce specific effects in the living transplant actors’ network, functioning to promote the recruitment of donors in the family. / A doação de órgãos intervivos tem sido considerada uma alternativa à escassez de órgãos para transplante, figurando entre os procedimentos médicos onde podemos observar a intrincada relação entre as biotecnologias e a produção de sentidos no cotidiano. Esta pesquisa tem como objeto a doação de órgãos entendida como uma prática social sustentada por uma rede de atores humanos e não humanos. Mais especificamente, nossa pesquisa focaliza os tipos de narrativa e os repertórios interpretativos que os doadores vivos usam para construir versões sobre a doação de órgãos intervivos. Foram realizadas entrevistas com três doadores, dois potenciais doadores e três receptores no setor de Transplante Renal do Hospital Universitário Walter Cantídio, em Fortaleza. As entrevistas foram transcritas e analisadas em termos dos tipos de narrativa e dos repertórios interpretativos empregados. Como resultados, podemos destacar a predominância do uso de narrativas de restituição que constroem a doação de rim como um expediente para restaurar a saúde perdida pelo receptor. Esse achado remete a uma matriz discursiva poderosa, sustentada pela biotecnologia e pelas práticas da medicina ocidental contemporânea, que valoriza a saúde como condição de normalidade e institui o imperativo de sua reparação nos casos de adoecimento. Entre os argumentos e metáforas usados para construir a doação, destacam-se o ato de amor e de doação de vida, que compõem uma “linguagem da dádiva”. O doador tende a ser posicionado como pessoa corajosa e heróica, cujo altruísmo permite salvar vidas; enquanto os órgãos a serem doados são construídos como recursos escassos e valiosos que devem ser reciclados, especialmente no caso de demanda de um parente próximo. Concluímos que os modos de narrar histórias de doação renal e os repertórios interpretativos empregados nesses relatos produzem efeitos específicos na rede de atores que compõem o transplante intervivos, operando para favorecer o recrutamento de doadores na família.

Este trabalho teve por objetivo investigar as representações sociais construídas pelos familiares que, após a morte de seus parentes, ofereceram seus órgãos e tecidos para transplantes. Foi realizada uma pesquisa de campo utilizando como instrumento a entrevista semidirigida, também conhecida pela comunidade científica como pesquisa semiestruturada. Foram entrevistados nove familiares de doadores mortos, um doador vivo e um receptor de órgãos. Dois sentidos emergiram no estudo de campo: um ligado à ideia de vida e outro ligado à ideia de morte. No primeiro, estão as percepções da doação como cura, solidariedade, continuidade e altruísmo; no segundo ocorre principalmente a questão da fragmentação do corpo. Assim, com esta pesquisa foi possível concluir que se as pessoas em vida pudessem falar livremente aos seus familiares sobre seu desejo de serem doadoras, poderiam de certa forma facilitar aos seus familiares a decisão em doar os órgãos no difícil momento da morte. Todos os indivíduos entrevistados neste trabalho expressaram que este fator foi determinante no momento da decisão e tornou a decisão menos estressante. Refletir sobre doação de órgãos no cotidiano permite que o tema saia do anonimato e adentre tanto nas redes de apoio social quanto em instituições hospitalares e de saúde, a ponto de facilitar a decisão posterior de familiares. / This job has the objective to investigate the Representações Sociais (Social Leaders) formed by relatives dead people donors that offer their organs and tissue to transplant. A research was done by using as an instrument: the half interview. Nine relatives, an alive donor and an organ receptor were interviewed. Two ways appeared in the study: the one related to the idea of life and the other one related to the idea of death. In the idea of life, the cure ideas, solidarity, continuity and altruism are present. In the second idea, there is mainly the body fragmentation. This way, we can be aware that if the people that are still alive could tell their relatives freely about their wish to be donor, it would be easier for their relatives to decide to donate organs in a difficult moment in life. All the interviewed people showed that this fact was determinative at the decision moment of donating organs and tissue, making that decision less stressful. Thinking over the organ donation in every day life will permit that this theme leave the anonymity and go into as well the social support system as health and hospital system to make the relativess late decision easier.

Este trabalho teve por objetivo investigar as representações sociais construídas pelos familiares que, após a morte de seus parentes, ofereceram seus órgãos e tecidos para transplantes. Foi realizada uma pesquisa de campo utilizando como instrumento a entrevista semidirigida, também conhecida pela comunidade científica como pesquisa semiestruturada. Foram entrevistados nove familiares de doadores mortos, um doador vivo e um receptor de órgãos. Dois sentidos emergiram no estudo de campo: um ligado à ideia de vida e outro ligado à ideia de morte. No primeiro, estão as percepções da doação como cura, solidariedade, continuidade e altruísmo; no segundo ocorre principalmente a questão da fragmentação do corpo. Assim, com esta pesquisa foi possível concluir que se as pessoas em vida pudessem falar livremente aos seus familiares sobre seu desejo de serem doadoras, poderiam de certa forma facilitar aos seus familiares a decisão em doar os órgãos no difícil momento da morte. Todos os indivíduos entrevistados neste trabalho expressaram que este fator foi determinante no momento da decisão e tornou a decisão menos estressante. Refletir sobre doação de órgãos no cotidiano permite que o tema saia do anonimato e adentre tanto nas redes de apoio social quanto em instituições hospitalares e de saúde, a ponto de facilitar a decisão posterior de familiares. / This job has the objective to investigate the Representações Sociais (Social Leaders) formed by relatives dead people donors that offer their organs and tissue to transplant. A research was done by using as an instrument: the half interview. Nine relatives, an alive donor and an organ receptor were interviewed. Two ways appeared in the study: the one related to the idea of life and the other one related to the idea of death. In the idea of life, the cure ideas, solidarity, continuity and altruism are present. In the second idea, there is mainly the body fragmentation. This way, we can be aware that if the people that are still alive could tell their relatives freely about their wish to be donor, it would be easier for their relatives to decide to donate organs in a difficult moment in life. All the interviewed people showed that this fact was determinative at the decision moment of donating organs and tissue, making that decision less stressful. Thinking over the organ donation in every day life will permit that this theme leave the anonymity and go into as well the social support system as health and hospital system to make the relativess late decision easier.

Orientador: Newton Kara-Jose / Tese (doutorado) - Universidade Estadual de Campinas, Faculdade de Ciencias Medicas / Made available in DSpace on 2018-08-14T21:13:45Z (GMT). No. of bitstreams: 1 Santos_MarcioAlexandreAraujoFlorenciodos_D.pdf: 1714788 bytes, checksum: 4df269b178244131a0b3d831ea27e272 (MD5) Previous issue date: 2009 / Resumo: Os objetivos deste estudo foram identificar o perfil epidemiológico dos familiares responsáveis pela autorização ou recusa à doação de córneas de seus parentes falecidos no Hospital de Clínicas da Universidade Estadual de Campinas; suas razões para autorizar ou não a doação; e razões para ser ou não doador de córneas. O estudo foi desenvolvido na Faculdade de Ciências Médicas, no Hospital de Clínicas da Universidade Estadual de Campinas - Unicamp, Campinas, São Paulo, Brasil, entre dezembro de 2005 e dezembro de 2006. O desenho adotado nesta pesquisa foi um estudo transversal do tipo analítico e descritivo, realizado através de questionário testado em estudo piloto. A amostra populacional desse estudo foi calculada baseado em teste estatístico para estudo descritivo e variável qualitativa. Foram realizadas 184 entrevistas e os resultados sugeriram que os familiares que eram solteiros, divorciados ou separados; católicos ou sem religião; que possuíam conhecimento que sua religião era a favor da doação; que possuíam atitudes altruísticas; que possuíam algum grau de conhecimento sobre doação e que obtinham informação sobre doação pela TV ou rádio, autorizaram mais a doação das córneas de seu parente falecido. As razões citadas para autorizar a doação de córneas foram: solidariedade às famílias que esperam por uma córnea; respeito ao desejo em doar do falecido; atitude altruística de ajudar ao próximo; conforto ao momento de dor que a família vivia. E as razões citadas contra a doação foram: respeito ao desejo em não doar do parente falecido; desconfiança na utilização da córnea; demora para captar a córnea e razões religiosas. O conhecimento desse perfil e dessas razões poderá levar a um melhor entendimento da recusa familiar e assim, planejar medidas mais efetivas para aumentar a doação de córneas. / Abstract: The objectives of this study was to identify the epidemiological profile of the family responsible for granting or refusing the donation of corneas of their deceased relatives in the Clinical Hospital of State University of Campinas and identify their reasons for granting or not giving, and reasons to be or not donor corneas. The study was conducted at the College of medical Sciences of Clinical Hospital of state University of Campinas, São Paulo, Brazil, between December 2005 and December 2006. The design adopted in this research study was a cross-sectional analytical and descriptive study through a questionnaire tested in a pilot study. The sample population of this study was calculated based on statistical test for a descriptive and qualitative variable. One hundred eighty four interviews were conducted and the results suggested that family members who were single, divorced or separated, Catholic or no religion, who had knowledge that their religion was in a favor donation, which had altruistic attitudes, which had some degree of knowledge about cornea donation and they obtained information about donation by TV or radio were more significant to authorize the donation of corneas of their deceased relative. Reasons cited to authorize the donation of corneas were: solidarity, the deceased wanted to donate, altruistic attitude to the next, comfort the moment of pain that the family lived. And the reasons cited against the donation were the deceased relative did not want to be a donor, do not have confidence in the use of the cornea, the delay to capture the cornea and religion reasons. Knowledge of this profile and theses reasons may lead to a better understanding of family refusal and so, plan the most effective measures to increase the donation of corneas. / Doutorado / Oftalmologia / Doutor em Ciências Médicas

Submitted by Renata Lopes (renatasil82@gmail.com) on 2016-10-18T16:44:22Z No. of bitstreams: 1 monicacamposdaibert.pdf: 538391 bytes, checksum: 47a7c51d6f6a323fbff0ca594606b407 (MD5) / Approved for entry into archive by Adriana Oliveira (adriana.oliveira@ufjf.edu.br) on 2016-10-25T12:10:35Z (GMT) No. of bitstreams: 1 monicacamposdaibert.pdf: 538391 bytes, checksum: 47a7c51d6f6a323fbff0ca594606b407 (MD5) / Made available in DSpace on 2016-10-25T12:10:35Z (GMT). No. of bitstreams: 1 monicacamposdaibert.pdf: 538391 bytes, checksum: 47a7c51d6f6a323fbff0ca594606b407 (MD5) Previous issue date: 2007-08-24 / Este estudo pretende identificar e compreender sob a ótica dos fundamentos da integralidade, os fatores determinantes da recusa familiar na doação de órgãos, a partir da percepção dos familiares de potenciais doadores, que não consentiram a doação. O referencial teórico-conceitual referente à integralidade a compreende como um eixo estruturante da política de saúde, uma imagem-objetivo, uma conquista a ser alcançada. Particularizamos os sentidos que assume nas práticas profissionais, na organização dos serviços e na própria política de doação e transplante de órgãos. Utilizamos contribuições teóricas de diversos autores a fim de qualificar nosso estudo sobre a integralidade e a política de doação e transplante de órgãos no Brasil. Realizamos um estudo qualitativo por meio de entrevistas semi-estruturadas individuais com 9 sujeitos, que recusaram a doação dos órgãos de seus familiares falecidos. Os sujeitos residem na cidade de Juiz de Fora/MG, que integra a área de referência da CNCDO/Zona da Mata e foram entrevistados sobre doação no período de 2000 a 2004. Os depoimentos obtidos nas entrevistas substantivaram a elaboração de 7 categorias: atenção à saúde; acolhimento e vínculo; informação/desinformação; comunicação; concepção religiosa; situação de classe; e percepção de corpo, que possibilitaram compreender as razões da recusa de forma articulada com a não conquista da integralidade no cotidiano das ações de atenção e cuidado no âmbito da famílias pesquisadas. As entrevistas foram apresentadas por meio da citação de trechos discursivos percebidos por nós como mais relevantes, a fim de fundamentar a análise, bem como oportunizar a proximidade com o contexto de realização da pesquisa, reconhecendo a voz e o valor das reflexões apresentadas pelos sujeitos. / This study seeks to identify and to understand, from the standpoint of integrality, the determining factors for familiy refusal to donate organs, by examining the, perceptions of potential organ donor’s families who refuse to comply with donation requests. The theoretical reference to integrality views it as a structural pivot of health policy, an objective image, a goal to be reached. Its meanings to professional practices, the organization of services and to the organ donation and transplantation policies were distinguished. We used theoretical contributions from a variety of authors to qualify this study about integrality and the organ donation and transplantation policies in Brazil. A qualitative study was made through semi-structured individual interviews with 9 subjects refused to donate their deceased relatives’ organs. These subjects live in Juiz de Fora/MG, a city located in the CNCDO/Zona da Mata reference area, and were interviewed about organ donation between 2000 and 2004. The interviews led to the establishment of 7 categories: health care, shelter and bond, information/disinformation, communication, religious concept, social situation and body perception. These categories enable us to understand the reasons behind the refusals in an articulated way with the lack of integrality in daily “attention and care actions” in the families studied. The interview were presented through quotes of parts that we judged to be more relevant, on which to base the analysis and to enable us to take advantage of the proximity with research, recognizing the voice of the subjects and the value of the reflections they presented.