Estudo do tipo metodológico com abordagem psicométrica que lida com a teoria e desenvolvimento de instrumentos de medição. O percurso metodológico norteou-se nos procedimentos teóricos, empíricos e analíticos para a elaboração de instrumento psicométrico (PASQUALI, 1998), e fundamentou-se em duas teorias da privacidade (WESTIN, 1970; ALTMAN, 1975), na teoria da territorialidade (ARDREY, 1966) e na teoria proxêmica (HALL, 1986). Os procedimentos teóricos compreenderam a definição do construto privacidade física no contexto hospitalar, em especial a exposição e manipulação corporal, o qual delineou-se a partir do referencial teórico adotado, da literatura pertinente e de estudo junto a 34 pacientes internados nos hospitais de Maringá-PR, com abordagem qualitativa, utilizando-se a análise de conteúdo (BARDIN, 2000). Esse estudo permitiu descrever a percepção do paciente hospitalizado sobre a privacidade em geral e sobre a privacidade física, identificando-se três categorias empíricas referentes à privacidade em geral, a saber, dignidade e respeito, espaço pessoal e territorial e autonomia, e com relação à privacidade física extraíram-se iguais categorias, acrescentando-se às anteriores a categoria intimidade e toque. Tais categorias compuseram os quatro domínios do instrumento em construção. O instrumento foi submetido à análise semântica e conceitual por um painel de juízes composto por sete peritos, e na seqüência a um pré-teste junto à população-alvo, resultando em um instrumento com 22 itens, tendo o domínio dignidade e respeito 8 itens, intimidade e toque e espaço pessoal e territorial 5 itens cada, e o domínio autonomia 4 itens. Os procedimentos empíricos englobaram a aplicação do instrumento construído, Escala de Satisfação do Paciente Hospitalizado com sua Privacidade Física (ESPH-PF), a uma amostra de 254 pacientes internados na rede hospitalar de Maringá- PR, entre novembro de 2007 e fevereiro de 2008. Os procedimentos analíticos englobaram a análise da consistência interna ( de Cronbach total de 0,68 e variação entre 0,35 e 0,60 nos domínios) e a validade de construto por meio da análise fatorial, extraindo-se seis fatores (57,6% da variância total) e optando-se por manter os quatro pré-estabelecidos (47,7% da variância explicada). A validade convergente do construto utilizando-se a correlação produtomomento de Pearson (p < 0,01) e aplicação da Escala do Sentimento frente à Invasão do Espaço Territorial e do Espaço Pessoal do Paciente Hospitalizado (EMS-FIETEP), contemplou o domínio espaço pessoal e territorial da ESPH-PF e confirmou o poder discriminativo de todos os 22 itens do instrumento. A validade discriminante do construto empregando o teste t de student (p < 0,05) não encontrou diferença estatística significante, exceto nos grupos extremos relativos à escolaridade. A análise psicométrica demonstra que a ESPH-PF pode ser aplicada para medir a satisfação do paciente com sua privacidade física no contexto hospitalar, sobretudo no que diz respeito à exposição e manipulação corporal. Os resultados obtidos junto a essa população não podem ser generalizados, porém comprovam a importância de se avaliar a satisfação do paciente com sua privacidade física, visto que o nível de satisfação revela, implicitamente, as preferências e necessidades dele por privacidade, e indiretamente também reflete o desempenho dos profissionais de saúde relativo à proteção e manutenção da privacidade no hospital. / The study is of a methodological type using the psychometric approach which deals with the theory of the development of measurement instruments. The methodological apparatus is based on empirical and analytical theoretical proceedings, to the development of a psychometric instrument (PASQUALI, 1998), and is grounded in two privacy theories (WESTIN, 1970; ALTMAN, 1975), on the territoriality theory (ARDREY, 1966) and on the proxemic theory (HALL, 1986). The theoretical proceedings entailed the definition of the physical privacy construct in hospital context, especially the exposure and body manipulation, drawing on the theoretical apparatus used, the related literature and a study with thirty-four patients admitted in hospitals in Maringá-PR, with qualitative approach, using the content analysis (BARDIN, 2000). This study allowed to describe the perception of the hospitalized patient as regards general privacy and physical privacy, identifying three empirical categories concerning general privacy, namely dignity and respect, personal and territorial space and autonomy, and as regards physical privacy the same categories were extracted, adding to the previous ones the category of intimacy and touch. Such categories composed the four domains of the instrument under construction. The instrument was subjected to semantic and conceptual analyses by a panel of judges composed by seven connoisseur, followed by a pretest with the target population, resulting in an instrument with 22 items, in which the domain dignity and respect had eight items, intimacy and touch and personal and territorial space had five items each, and the domain autonomy had four items. The empirical proceedings entailed the application of the constructed instrument, Satisfaction Scale of the Hospitalized Patient with his/her Physical Privacy (ESPH-PF), to a sample of 254 patients admitted in the hospital chain of Maringá-PR between November 2007 and February 2008. The analytical proceedings entailed the internal consistency analysis (-Cronbach total of 0,68 variation between 0,35 and 0,60 in the domains) and the construct validity by means of factorial analysis, extracting six factors (57,6% of total variation) and opting to maintain the four preestablished ones (47,7% of explained variation). The convergent validity of the construct utilizing the correlation product-moment of Pearson (p < 0,01) and the application of Feeling Scale before the Invasion of Territorial and Personal Space of the Hospitalized Patient (EMSFIETEP) contemplated the domain personal and territorial space of ESPH-PF and confirmed the discriminating power of all 22 items of the instrument. The discriminating validity of the construct employing the test t of student (p < 5005) did not find significant statistical difference, except for extreme groups regarding education. The psychometric analysis shows that the ESPH-PF can be applied to measure the patients satisfaction with his/her physical privacy, once the level of satisfaction implicitly reveals his/her privacy preferences and necessities, and also indirectly reflects the performance of health professionals as regards protection and maintenance of hospital privacy.

Au cours du dernier siècle, les circonstances de la mort ont changé. La plupart des décès surviennent maintenant à des âges élevés. Ils ont principalement lieu en institution et sont souvent précédés d’une longue maladie chronique accompagnée de souffrances et d’angoisses qui ne peuvent être soulagées. Ces mêmes sentiments se retrouvent aussi chez les personnes accidentées de la vie. C’est pourquoi, désormais, les patients privilégient la qualité de la mort à la prolongation de la vie dans la souffrance. Ainsi, de plus en plus fréquemment, le corps médical est confronté à des demandes d’euthanasie ou de suicide assisté de la part des souffrants. C’est dans ce contexte qu’il est intéressant de s’interroger sur la législation française en matière de fin de vie et sur la place donnée tant aux professionnels de santé, qu’aux patients. Si la loi Leonetti du 22 avril 2005 a constitué une avancée considérable en la matière, elle ne répond malheureusement pas à l’ensemble des situations existantes et demeure actuellement insuffisante face aux requêtes constantes des personnes souffrantes et de la majorité de la population française. En témoigne la récente affaire Vincent Lambert dans laquelle, l’équipe médicale confrontée à des avis discordants au sein de la famille proche du patient et à l’absence de volonté exprimée de celui-ci, a été amenée à prendre une décision collégiale sur la poursuite ou non du traitement délivré à ce patient tétraplégique en état de conscience minimale, qui semble-t-il ne voulait plus survivre. S’en sont suivies plusieurs mêlées judiciaires qui ont permis de relancer le débat sur l’évolution de la législation en matière de fin de vie / During the last century, the circumstances of the death changed. Most of the deaths arise now at high ages even very high. They mainly take place in institution and are often preceded by a long chronic disease accompanied with sufferings and with fears which cannot be relieved. The same feelings also find themselves at the more or less young people, damaged by the life.That is why, from now on, the patients favor the quality of the death to the extra time of the life in the suffering. So, more and more frequently, the medical profession is confronted with requests of euthanasia or suicide assisted on behalf of the suffering.It is in this context that it is interesting to wonder on the French legislation regarding the end of life and on the place given as long to the healthcare professionals, and the patients.If the Leonetti’s law of April 22nd, 2005 constituted a considerable advance on the subject, she does not unfortunately answer all the existing situations and currently not sufficient in front of constant requests of the suffering people and the majority of the French population. The recent affair Vincent Lambert shows it in which, the medical team confronted with clashing notices within the family close to the patient and in the absence of will expressed by this one, was brought to make a collective decision on the pursuit or not of the treatment delivered to this patient tetraplegic in state of minimal consciousness, who it seems did not want to survive any more. Followed itself several judicial scrums which allowed to boost the debate on the evolution of the legislation regarding the end of life

Abstract The aim of the study was to describe Finnish patients' experiences of the regulation of personal privacy in hospital with the concept 'personal space'. The central topics of interest included the personal space and it's preservation. The right of self-determination while inpatients in hospital enables the patient to preserve personal space. Patients' experiences of personal space and it's preservation were examined by describing the significance of the preservation of personal space, other factors connected with personal space preservation, patients' means to protect their personal space preservation in the interaction with nursing staff, and the tactile, auditory, visual, and olfactory failure of personal space preservation. Patients' personal space was observed from the point of view of triangulation, and quantitative and qualitative data were integrated in the research. The purpose was to provide fresh knowledge in Finnish nursing science on patients' personal space and it's preservation in hospital, as well as to introduce the factors and concepts connected with the phenomenon of personal space to a wider public. The research material was collected in the internal medicine wards of a university hospital. The collection of data was carried out by means of a structured interview (N = 250) and the observation (N = 25) of interactive situations between patients and nursing staff. The structured questions of the interviews were analysed in the software SPSS for Windows 10.1.2. The results were presented as frequency and percentage distributions. The averages used were the mean, the mode, and the median. Cross-tabulation and Spearman's correlation coefficient were used to find out the correlation between variables. The significance of sum variables measuring auditory, visual, and olfactory invasion was tested by means of the t-test on independent groups, the one-way variance analysis, Mann-Whitney's U-test, and χ2-independence test. The open questions of the interviews and the observations were analysed with deductive-inductive content analysis. Patients' right of self-determination in relation to the nursing procedures on their own body was best implemented among the young and more educated patients. The patients protected their personal space with verbal messages related to pain and the right of self-determination, and with non-verbal messages related to body positions, gestures, expressions, eye contact as well as its avoidance, and to the use of hospital screens. The screens were used for the protection of one's own privacy and intimacy, but also for the protection of co-patients' privacy and intimacy. For the majority of the patients, the inviolability of their tactile and olfactory space were particularly important. The personal space had been invaded tactily, auditorily, and olfactorily. Significant factors affecting the experience of personal space were the patient's sex and age, the size of the patient room, the patient's coping capability in hospital, the number of treatments, and mood during hospitalisation. The failure of personal space preservation made the patients feel, above all, hurt and treated as objects. The patients found it justified for the nursing staff to touch them when assisting, but also thought that unnecessary extra taction does not belong to nursing practice. Taction by the nursing staff was mainly experienced as gentle and pain-reactive, as well as respectful of the patient's body. / Tiivistelmä Tutkimuksen tarkoituksena oli kuvata suomalaisten potilaiden kokemuksia yksityisyyden säätelystä sairaalassa henkilökohtaisen tilan avulla. Mielenkiinnon kohteina olivat henkilökohtainen tila ja sen säilyminen. Potilaan itsemääräämisoikeuden toteutuminen hoidon aikana mahdollistaa henkilökohtaisen tilan säilymisen. Potilaiden kokemuksia henkilökohtaisesta tilastaan ja sen säilymisestä selvitettiin kuvaamalla henkilökohtaisen tilan säilymisen merkityksellisyyttä, henkilökohtaisen tilan säilymiseen yhteydessä olevia tekijöitä, potilaiden keinoja suojata henkilökohtaisen tilansa säilyminen ja henkilökohtaisen tilan säilymisen taktiilista, auditiivista, visuaalista ja olfaktorista epäonnistumista. Potilaan henkilökohtaista tilaa tarkasteltiin triangulaation näkökulmasta ja tutkimuksessa yhdistettiin kvantitatiivinen ja kvalitatiivinen aineisto. Tutkimuksen tavoitteena oli saada uutta suomalaista hoitotieteellistä tietoa potilaan henkilökohtaisesta tilasta ja sen säilymisestä sairaalassa sekä tehdä tunnetuksi henkilökohtaisen tilan ilmiöön liittyviä tekijöitä ja käsitteitä. Tutkimuksen aineisto kerättiin yliopistollisen sairaalan sisätautien klinikan vuodeosastoilla. Aineisto kerättiin strukturoidulla haastattelulla (N = 250) ja havainnoimalla (N = 25) potilaan ja hoitotyöntekijän välisiä vuorovaikutustilanteita. Haastattelujen strukturoidut kysymykset analysoitiin SPSS for Windows 10.1.2 -ohjelmalla. Tulokset esitettiin frekvenssi- ja prosenttijakaumina. Keskilukuina käytettiin keskiarvoa, moodia ja mediaania. Muuttujien välisten riippuvuuksien selvittämiseksi käytettiin ristiintaulukointia ja Spearmanin korrelaatiokerrointa. Auditiivista, visuaalista ja olfaktorista loukkaamista mittaavien summamuuttujien merkitsevyyden testaamiseksi käytettiin riippumattomien ryhmien t-testiä, yksisuuntaista varianssianalyysiä, Mann-Whitneyn U-testiä ja χ2-riippumattomuustestiä. Haastattelujen avoimet kysymykset ja havainnoinnit analysoitiin deduktiivis-induktiivisella sisällön analyysillä. Potilaiden itsemääräämisoikeus suhteessa omaa kehoa koskeviin hoitotoimenpiteisiin toteutui parhaiten nuorten ja enemmän koulutettujen potilaiden kohdalla. Potilaat käyttivät henkilökohtaisen tilansa suojaamiseksi erilaisia kipuun ja itsemääräämisoikeuteen liittyviä verbaalisia viestejä ja kehon asentoihin, eleisiin, ilmeisiin, katsekontaktiin ja sen välttämiseen sekä väliverhojen käyttämiseen liittyviä nonverbaalisia viestejä. Väliverhoja käytettiin suojaamaan omaa yksityisyyttä ja mahdollistamaan oma intimiteettisuoja, mutta myös suojaamaan potilastoverin yksityisyyttä ja mahdollistamaan hänelle intimiteettisuoja. Potilaat kokivat merkityksellisenä erityisesti taktiilisen ja olfaktorisen tilan säilymisen loukkaamattomana. Henkilökohtainen tila oli tullut loukatuksi taktiilisesti, auditiivisesti ja olfaktorisesti. Henkilökohtaisen tilan kokemiseen merkityksellisenä olivat yhteydessä potilaan sukupuoli, ikä, potilashuoneen koko, selviytymiskyky sairaalassa, hoitokertojen määrä ja mieliala sairaalassa. Henkilökohtaisen tilan säilymisen epäonnistuminen aiheutti potilaille etenkin pahaa mieltä ja itsen kokemista esineeksi. Potilaat oikeuttivat hoitotyöntekijän kosketuksen autettaessa, mutta turha ja ylimääräinen kosketus ei kuulu hoitotyöhön. Hoitotyöntekijän kosketus koettiin pääasiallisesti hellävaraiseksi, kivut huomioon ottavaksi ja kehoa kunnioittavaksi ja arvostavaksi.

This paper discusses whether current UK social policy promotes the human rights of people with dementia living in England. The author focuses on the role of recent legal reforms and key developments in social care policy--notably the Mental Capacity Act 2005 and the 2009 National Dementia Strategy--in facilitating their human rights to liberty and self-determination, particularly a right to choose to live at home. The extent to which the National Dementia Strategy provides access to services and support which provide an alternative to institutional care is critiqued. Whilst recent legislative change has endorsed the rights of people with dementia to liberty and self-determination, it is suggested there is a lack of commitment in government policy more generally to providing access to social care to enable people with dementia to exercise these human rights.

Le dommage causé à soi-même a très longtemps constitué un sujet hors du droit, synonyme de stigmatisation morale ou de fatalité. Depuis la fin du XXème siècle, c’est un enjeu essentiel des politiques publiques qui fait encore aujourd’hui l’objet d’un débat éthique et juridique. D’une part, la volonté de se causer un dommage exprime les aspirations de l’homme contemporain à obtenir la maîtrise de son corps, qu’il s’agisse de choisir le temps et les conditions de sa mort, de revendiquer des pratiques masochistes ou bien de faire don de ses organes. D’autre part, cette prise de risque dommageable pour soi révèle très souvent une opposition de l’État et de la société en général, en raison de l’atteinte susceptible d’être portée aux valeurs sociales et aux équilibres budgétaires. En tant que sources croissantes de préoccupation, les manifestations et les limites du dommage causé à soi-même méritent d’être soumises à l’étude de leur contexte historique, social et juridique. / The damage caused to oneself was for a very long time a topic outside the law, as a synonym for moral stigmatization or for fate. Since the end of the XXth century, it is an essential public policy issue that is the object even today of an ethical and legal debate. On the one hand, the will to harm oneself reflects the aspiration of the contemporary man to have the control of its body, that it is a question of choosing the time and the conditions of its death or claiming masochistic practices or donating organs. On the other hand, this harmful risk-taking for oneself reveals frequently an opposition of the State and more generally of the society, because of the potential violation of the social values and the budget balances. As increasing sources of concerns, the manifestations and the limits of the damage caused to oneself deserve to be subjected to the study of their historic, social and legal context.

Les données à caractère personnel sont appréhendées par le droit comme des objets distincts de la personne à laquelle elles se rapportent. Ce statut particulier serait justifié par la transformation résultant du traitement de données. La loi du 6 janvier 1978 suggère pourtant un rattachement en définissant la donnée personnelle comme une « information relative à une personne physique identifiée ou qui peut être identifiée, directement ou indirectement ». Lesdites données sont donc des éléments identifiants, et en cela, par une interdépendance des éléments subjectifs et objectifs, des composantes de l’identité. Elles forment l’identité numérique de la personne, toujours plus sollicitée et collectée. L’hypothèse intuitive de l’identité est contrariée par le droit positif français, au sein duquel la loi Informatique et libertés marque son autonomie par rapport à l’article 9 du Code civil, matrice des droits de la personnalité. Le droit de l’Union européenne isole également, au sein de la Charte des droits fondamentaux, la protection des données à caractère personnel de la protection de la vie privée. Cette autonomisation permet l’accélération de la patrimonialisation des données à caractère personnel, visées comme éléments isolés par une multitude de contrats d’adhésion autorisant le traitement. Le sectionnement du lien entre la personne et ses données n’est toutefois pas inéluctable : la protection de l’autonomie de la personne peut maintenir cette connexion. La Cour européenne des droits de l’Homme, qui intègre la protection des données à celle de la vie privée, affirme le lien entre ces informations personnelles et l’identité. En outre, sa jurisprudence relative à la protection de l’autonomie personnelle peut constituer une réponse à l’objectivation des personnes. Dans le même sens, la jurisprudence du Conseil constitutionnel relative à la liberté personnelle, vecteur du droit au développement de la personnalité et de la protection de l’identité en France, a déjà accueilli favorablement la protection des données à caractère personnel. Une réflexion qui prend l’identité comme point de départ de l’étude d’un droit à la protection des données met en lumière le véritable enjeu de la collecte exponentielle des données à caractère personnel et du profilage qui s’en suit : l’autonomie des personnes, dont la préservation est assurée à travers le concept de personne humaine, sujet des droits fondamentaux. / French law approaches personal data and the person they are related to as separated objects. This special status would be justified by the transformation resulting from the data processing. However, by defining personal data as "information relating to an identified or identifiable natural person, directly or indirectly", the law of 6 January 1978 suggests that they are in fact connected to each other. Therefore, those data are to be understood as identifying elements. Following the interdependence of subjective and objective elements, they are components of identity. They form the person’s digital identity, which is increasingly solicited and gathered. The intuitive assumption of personal data as components of identity is thwarted by French positive law, within which the Data Protection Act marks its autonomy in comparison to Article 9 of the Civil Code – the latter being the matrix of rights related to personality. The same way, protection of personal data is distinguished from protection of privacy in the European Union’s Charter of Fundamental Rights. This increasing autonomy allows the accelerated conversion of personal data into assets. In a multitude of conventions, they are regarded as isolated elements of which processing is allowed. Yet the split between the person and their data could be avoided: protection of the autonomy of the person can ensure a connexion. The European Court of Human Rights considers data protection as part of the right to privacy, hence asserting the existence of a link between personal data and identity of the individual. Moreover, its case law regarding the protection of personal autonomy may constitute an answer to the objectification of individuals. Correlatively, the French Constitutional Court has already taken data protection as a part of personal freedom, the latter being considered in its case law as the embryo of the right to the development of personality and the protection of identity. By taking identity as the starting point of a study examining a right to data protection, it is possible to reveal the stakes of exponential gathering of personal data and ensuing profiling: the autonomy of the individual. Therefore, the latter can be protected by the concept of human person as subject of fundamental rights.

Made available in DSpace on 2016-06-02T19:44:11Z (GMT). No. of bitstreams: 1 4423.pdf: 4351181 bytes, checksum: 7a7292525017c61a2cde821d47dd2db7 (MD5) Previous issue date: 2012-07-02 / The aim was to investigate if there is association between occupational roles, independence, purchasing power, age, time of disability and technology in the lives of people with physical disabilities living in the city of São Carlos, São Paulo, Brazil. For this, we attempted to compare if there was a variation in the number of occupational roles in the three times (past/present/future), according to gender and among two groups (adults and elderly), to describe the performance patterns of occupational roles (absence, continuum, loss, gain); identify which are assistive technology resources that these individuals have and how did the acquisition of these technologies, usability and abandonment; identify the knowledge about the subject of granting policies of technologies. From a cross-sectional research, with a convenience sample, we selected 91 subjects, aged from 18 to 93 years, enrolled in Family Health Care Units, with some physical disability. The sample was divided in two groups: adults (n = 34) and elderly (n = 57) to compare the results between them. The instruments of data collection were the Role Checklist, the Modified Barthel Index, the Brazil Economic Classification Criterion and a form developed by the researcher. For data analysis we used a quantitative approach composed by descriptive analysis, ANOVA with repeated measures and Correspondence Analysis. As an outcomes, we found that the participants showed a considerable repertoire of technologies, mostly acquired with their own funds or donations. Much of these technologies could be granted by the grant program of the Federal Government, however, the list of technologies identified in this study suggests that these individuals also make use, as well as other technologies require not covered by the grant program. It was observed a trend toward reliance on subject, and this trend follows a higher order of dependence to total independence. For assistive technology, it was observed that the classes with smaller number of technology classes were related to independent and in greater numbers, with some dependency classes. With regard to the purchasing power it was noted that the classes C1 and D were more associated with less dependence, since the classes B1, B2 and C2 to a moderate dependence and class A2, besides with low frequency and little explanation, coupled with a reliance on more high. It should be noted that although the technology was not directly associated with the independence, the latter was associated with a greater number of occupational roles, which requires a look at the issues of independence, when considering the typology of occupational roles and how this independence moves between roles in the daily life of these participants. From the data obtained, some implications are done in order to increase actions developed in the health care of people with disabilities and the improvement of public policies for this population. / Teve-se por objetivo verificar se existe associação entre os papéis ocupacionais, a independência, o poder aquisitivo, a idade, o tempo de deficiência e a tecnologia assistiva na vida de pessoas com deficiências físicas residentes na cidade de São Carlos. Para isso, buscou-se comparar se existe variação no número de papéis ocupacionais nos três tempos (passado/presente/futuro), de acordo com o sexo e em dois grupos (adultos e idosos); descrever os padrões de desempenho dos papéis ocupacionais (ausência, continuidade, perda, ganho dos papéis); identificar quais são os recursos de tecnologia assistiva que esses sujeitos possuem e como ocorreu a aquisição dessas tecnologias, sua usabilidade e abandono; e identificar o conhecimento dos sujeitos acerca das políticas de concessão de tecnologias. A partir de uma pesquisa transversal, com amostra de conveniência, foram selecionados 91 sujeitos, com idades variando de 18 a 93 anos, cadastrados em Unidades de Saúde da Família, com algum tipo de deficiência física. Subdividiu-se a amostra em adultos (n=34) e idosos (n=57) a fim de comparação dos resultados entre os grupos. Os instrumentos da coleta de dados foram a Lista de Identificação de Papéis Ocupacionais, o Índice de Barthel Modificado, o Critério de Classificação Econômica Brasil e um Formulário, elaborado pelo pesquisador. Para a análise dos dados utilizou-se a abordagem quantitativa, com análise descritiva, ANOVA com Medidas Repetidas e a Análise de Correspondência. Como resultados, identificou-se que os sujeitos apresentaram um repertório considerável de tecnologias, em sua maioria, adquiridas com recursos próprios ou por doações. Boa parte dessas tecnologias poderiam ser concedidas pelo programa de concessão do Governo Federal, entretanto, a lista de tecnologias identificada na presente pesquisa sugere que esses sujeitos também fazem uso, bem como necessitam de outras tecnologias não previstas no programa de concessão. Pôde-se observar uma tendência em relação à dependência dos sujeitos, sendo que tal tendência segue uma ordem de maior dependência para independência total. Para a tecnologia assistiva, observou-se que as classes com menor número de tecnologia estiveram associadas às classes independentes e aquelas com maior número às classes de alguma dependência. Com relação ao poder aquisitivo, notou-se que as classes D e C1 estiveram mais associadas à menor dependência, já as classes B1, B2 e C2 a uma dependência intermediária e a classe A2, embora com baixa frequência e pouca explicação, associada a uma dependência mais elevada. Cabe destacar que embora a tecnologia não estivesse associada diretamente com a independência, esta última mostrou associação com um maior número de papéis ocupacionais, o que requer um olhar para as questões de independência, ao se considerar a tipologia de papéis ocupacionais e de que forma essa independência transita entre os papéis no cotidiano desses sujeitos. São apontadas implicações, a fim de incrementar ações desenvolvidas no âmbito da saúde da pessoa com deficiência e no aprimoramento das políticas públicas voltadas para essa população.

La literatura científica sitúa la autonomía del paciente en la toma de decisiones en el ámbito clínico, en una encrucijada entre dos posiciones éticas; el paternalismo y la elección informada. Analizar los textos de los registros de las historias clínicas y los discursos de las enfermeras, mediante una metodología cualitativa y desde la perspectiva de la ética foucaultiana, permite conocer los factores que determinan el poder de decisión de los pacientes. Este estudio revela que el paciente no es autónomo en la toma de decisiones sobre sus cuidados debido; a una determinada institucionalización de la atención, que marca los ritmos de las decisiones, a las características de las relaciones interprofesionales y a las dinámicas relacionales que se establecen entre los profesionales, en particular, de la enfermera con el paciente y la familia. Se debe liberar al paciente de las reglas impuestas, promoviendo su propia conducta, su propio estilo de vida. / The scientific literature places the patient autonomy in decision-making in the clinical setting, at a crossroads between two ethical positions, paternalism and informed choice. Analyze records of clinical histories and nurses discourses, using a qualitative methodology and from the perspective of foucauldian ethics, allows knowing the factors that determine the power of patient decision. This study reveals that the patient is not autonomous in making decisions about your care because, to a certain institutionalization of care, which marks the rhythms of the decisions, the characteristics of the interprofessional-relationships and relational dynamics that exist between professionals, in particular, of the nurse with the patient and family. It should free the patient from the rules imposed by promoting their own behavior, their own lifestyle. / La literatura científica situa l'autonomia del pacient en la presa de decisions en l'àmbit clínic, en una cruïlla entre dues posicions ètiques, el paternalisme i l'elecció informada. Analitzar els textos dels registres de les històries clíniques i els discursos de les infermeres, mitjançant una metodologia qualitativa i des de la perspectiva de l'ètica foucaultiana, permet conèixer els factors que determinen el poder de decisió dels pacients. Aquest estudi revela que el pacient no és autònom en la presa de decisions sobre les seves cures a causa, a una determinada institucionalització de l'atenció, que marca els ritmes de les decisions, a les característiques de les relacions interprofessionals i les dinàmiques relacionals que s'estableixen entre els professionals, en particular, de la infermera amb el pacient i la família. Cal alliberar el pacient de les regles imposades, promovent la seva pròpia conducta, el seu propi estil de vida.