Moderne Verwaltung und Datenschutz - ein Widerspruch?

In der Dissertation werden eine Reihe für das Verwaltungshandeln maßgeblicher gesetzlicher Vorschriften in Bezug auf den Datenschutz untersucht. Die nationalen und europäischen gesetzlichen Grundlagen für den Datenschutz werden dargestellt, ebenso die einschlägige Rechtsprechung der nationalen und europäischen Gerichte. Einen Schwerpunkt bildet das österreichische Konzept für das E-Government. In der Arbeit wird untersucht, inwieweit dieses Konzept mit Bezug auf den Datenschutz in verschiedenen Bereichen der Verwaltung umgesetzt worden ist, u.a. im Bildungsdokumentationsgesetz, Registerzählungsgesetz und dem Gesundheitstelematikgesetz. Ebenso werden das Sicherheitspolizeigesetz und verschiedene europäische und bilaterale Vorschriften hinsichtlich des Datenschutzes untersucht. Ein Schwerunkt ist dabei die europäische Richtlinie über die Vorratsdatenspeicherung und deren Umsetzung in Österreich.. Als Ergebnis der Untersuchungen lässt sich feststellen, dass Vereinbarkeit mit Datenschutzbestimmungen kein erstrangiges Ziel darstellt. Zwar werden die Datenschutzbestimmungen formal betont mit dem Ziel diese nicht offensichtlich zu verletzen. Dem Geist der Grundrechtsbestimmungen wird jedoch vielfach nicht entsprochen. Deutlich wird dies auch in der zunehmenden Tendenz der Verwaltung möglichst viele Daten über die Bürger zu sammeln, die sich ggf. leicht zu Profilen verdichten lassen. Diesen Tendenzen sollte im Interesse des Schutzes der Privatsphäre der Bürger entgegengewirkt werden und zwar auch durch Forschungen in weiteren Bereichen der Verwaltung. Im Zuge der Ausbreitung des Terrorismus und der organisierten Kriminalität sind die Möglichkeiten der Polizei Daten der Bürger zu erfassen und zu verwenden, stark ausgeweitet worden. Zumindest werden diese Entwicklungen als Argument für die Ausweitung angeführt. Andererseits sind Maßnahmen, Missbrauch von persönlichen Daten zu verhindern und die Privatsphäre zu schützen nicht in gleicher <Weise weiterentwickelt worden. Die Kontrolle der Sicherheitspolizei durch unabhängige Institutionen erscheint verbesserungsfähig. Weiter besteht die Notwendigkeit, die Eingriffe in die Privatsphäre stärker als bisher von richterlichen Zustimmungen abhängig zu machen.The dissertation thesis represents an investigation of several legal acts related to public administration in respect to the concern given to aspects of data protection. The national and European legal basis of data protection has been described as well as the relevant jurisdiction of national and European courts. Special attention has been given to the Austrian scheme for E-Government and its validity in the European context. The thesis investigates how this scheme has been realized in different sections with regard to the data protection, e.g. in the law for the documentation of education (Bildungsdokumentationsgesetz), in the law for the registration of people (Registerzählungsgesetz) and in the bill for the introduction of data processing in the institutions of medical care in Austria. The legal act concerning the activities of the police and the European or bilateral regulations for police cooperation have been analyzed with regard to aspects of data protection. Special attention was paid to the European Data Retention Directive and its application in Austria. As a general result of the investigations it can be stated that compliance with data protection rules seems not to be a very important objective of the public administration. It is followed mainly in a formal manner, in a way not to violate data protection rules obviously; privacy of the citizen is not an urgent topic. It has been showed that there is a growing tendency in governmental institutions to learn as much as possible about the features of the citizens and to get complete profiles of them. As a conclusion, this should be stopped and further research should be made in other areas of governmental activities in order to complement this exemplary representation. The scope of tools, which are used by the police and applied in international police cooperation in order to gain and utilize personal data of citizens, has been vastly extended with the growing phenomenon of international terrorism and the rise of crime rates in a global context. This at least has been the most used argument. On the other hand the measures to avoid misuse of personal data and to protect the privacy of citizens have not been developed to the same extent. The control of national police sections by independent public institutions and judge reserve for intervention into the private sphere of citizens have still to be improved

Avaliação das mudanças na política de garantia de preços mínimos: período de 1997 a 2004

This paper evaluates the main changes that happened in the Brazilian policies of agricultural minimum price since 1997, paying attention to operational issues and discrepancies among regions and products that occurred when implementing those policies. In 1996, Brazilian Federal Government created two new programs, Prêmio de Escoamento de Produto (PEP) and Contratos de Opções de Venda de Produtos Agropecuários (COVPA), in addition to other two traditional programs (Aquisição do Governo Federal, AGF, and Empréstimos do Governo Federal, EGF). However, the new programs only were implemented one year after. Since then, these four Federal programs of minimum prices have had different performances. This paper evaluates those differences, highlighting unequal distribution of these programs among products and regions. COVPA is concentrated in corn crops, PEP favored cotton and AGF is biased to rice and beans. Moreover, Center-Western states are favored in using these programs and Northern and Northeastern states little used these programs.Agricultural and Food Policy, Minimum price, Policies, Regions, Brazil,

El ocio en las personas con discapacidad intelectual: participación y calidad de vida a través de las actividades de ocio

El ocio ha sido identificado como un componente fundamental en la calidad de vida. Las actividades de ocio se han mostrado como contribuidores en la percepción subjetiva de satisfacción y bienestar y, por lo tanto, mejoran la calidad de vida de la persona. No obstante, la participación en actividades de ocio normalizadas y en el marco de la comunidad en las personas con Discapacidad Intelectual (DI) continúa siendo una asignatura pendiente. Este artículo trata de analizar las peculiaridades del ocio en las personas con DI, las dificultades en las oportunidades de acceso al ocio, cómo el entorno influye en la participación y qué tipo de servicios de apoyo se deben planificar para facilitar el acceso al ocio en la comunidad

La participación en las actividades de ocio de los niños y adolescentes con parálisis cerebral

En este artículo se presenta una revisión sobre el tema de la participación en las actividades de ocio de los niños y adolescentes con discapacidades, centrada en la parálisis cerebral. Según los resultados, los niños y adolescentes con PC participan menos en las actividades de ocio, siendo los más gravemente afectados los que se encontraban más limitados. Además, hay evidencia de que la participación no depende solamente de aspectos intrínsecos al niño/adolescente, sino también de factores familiares y ambientales. Se espera que la información presentada pueda guiar las investigaciones futuras, así como los programas y servicios dirigidos a mejorar los niveles de participación en las actividades de esta población

EQ-5D-Y-5L: developing a revised EQ-5D-Y with increased response categories

Purpose EQ-5D-Y is a generic measure of health status for children and adolescents aged 8–15 years. Originally, it has three levels of severity in each dimension (3L). This study aimed to develop a descriptive system of EQ-5D-Y with an increased number of severity levels and to test comprehensibility and feasibility. Methods The study was conducted in Germany, Spain, Sweden and the UK. In Phase 1, a review of existing instruments and focus group interviews were carried out to create a pool of possible labels for a modified severity classification. Participants aged 8–15 rated the severity of the identified labels in individual sorting and response scaling interviews. In Phase 2, preliminary 4L and 5L versions were constructed for further testing in cognitive interviews with healthy participants aged 8–15 years and children receiving treatment for a health condition. Results In Phase 1, a total of 233 labels was generated, ranging from 37 (UK) to 79 labels (Germany). Out of these, 7 to 16 possible labels for each dimension in the different languages were rated in 255 sorting and response scaling interviews. Labels covered an appropriate range of severity on the health continuum in all countries. In Phase 2, the 5L version was generally preferred (by 68–88% of the participants per country) over the 4L version. Conclusions This multinational study has provided a version of the EQ-5D-Y with 5 severity levels in each dimension. This extended version (EQ-5D-Y-5L) requires testing its psychometric properties and its performance compared to that of the original EQ-5D-Y-3L

EQ-5D-Y-5L: developing a revised EQ-5D-Y with increased response categories.

Kreimeier S, Astrom M, Burstrom K, et al. EQ-5D-Y-5L: developing a revised EQ-5D-Y with increased response categories. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. 2019;28(7):1951-1961.PURPOSE: EQ-5D-Y is a generic measure of health status for children and adolescents aged 8-15 years. Originally, it has three levels of severity in each dimension (3L). This study aimed to develop a descriptive system of EQ-5D-Y with an increased number of severity levels and to test comprehensibility and feasibility. METHODS: The study was conducted in Germany, Spain, Sweden and the UK. In Phase 1, a review of existing instruments and focus group interviews were carried out to create a pool of possible labels for a modified severity classification. Participants aged 8-15 rated the severity of the identified labels in individual sorting and response scaling interviews. In Phase 2, preliminary 4L and 5L versions were constructed for further testing in cognitive interviews with healthy participants aged 8-15 years and children receiving treatment for a health condition. RESULTS: In Phase 1, a total of 233 labels was generated, ranging from 37 (UK) to 79 labels (Germany). Out of these, 7 to 16 possible labels for each dimension in the different languages were rated in 255 sorting and response scaling interviews. Labels covered an appropriate range of severity on the health continuum in all countries. In Phase 2, the 5L version was generally preferred (by 68-88% of the participants per country) over the 4L version. CONCLUSIONS: This multinational study has provided a version of the EQ-5D-Y with 5 severity levels in each dimension. This extended version (EQ-5D-Y-5L) requires testing its psychometric properties and its performance compared to that of the original EQ-5D-Y-3L

Medida da Participação e do Ambiente - Crianças e Jovens (PEM-CY): adaptação transcultural para o uso no Brasil

Introdução: A Medida da Participação e do Ambiente - Crianças e Jovens (PEM-CY) é um instrumento que avalia a participação desses indivíduos nos ambientes da casa, da escola e da comunidade, a partir da percepção de seus pais e/ou responsáveis. Objetivo: Adaptar culturalmente a PEM-CY para o português do Brasil. Método: O processo de adaptação transcultural foi composto por cinco estágios: (I) Adaptação inicial para o português do Brasil; (II) Síntese das versões; (III) Retrotradução; (IV) Comitê de especialistas; (V) Compreensão pelos pais e retrotradução para aprovação final.&nbsp;Resultados:&nbsp;As adaptações implementadas visaram favorecer a fluência na leitura, bem como facilitar a interpretação e compreensão do questionário.&nbsp;O título sofreu alteração e alguns termos foram substituídos nas instruções para pesquisa. Mais exemplos foram adicionados a algumas atividades das seções de participação e ambiente dos três ambientes, e algumas palavras foram alteradas para expressões mais equivalentes à linguagem popular. Conclusão: A versão adaptada para o português do Brasil disponibiliza um instrumento inovador de avaliação da participação e do ambiente de crianças e jovens que poderá ser utilizado em diferentes cenários de prática e pesquisa.Introduction: The Participation and Environment Measure for Children and Youth (PEM-CY) is an instrument that assesses the participation and environment of these individuals in the home, school and community contexts through the perception of their parents and / or caregivers. Objective: To culturally adapt PEM-CY into Brazilian Portuguese. Method: The process of cross-cultural adaptation was composed of five stages: (I) Initial adaptation into Brazilian Portuguese; (II) Synthesis of the versions; (III) Back translation; (IV) Committee of experts; (V) Parent understanding and back-translation for final approval. Results: The implemented adaptations aimed to promote fluency in reading, as well as to facilitate the interpretation and comprehension of the questionnaire. The title has been changed and some terms have been replaced in the survey instructions. More examples have been added to some activities of the participation and environment sections, and some words have been changed to match the popular language. Conclusion: The Brazilian version of PEM-CY provides an innovative instrument for evaluating the participation and environment of children and young people that can be used in different practice and research scenarios

How congenital Zika virus impacted my child's functioning and disability: a Brazilian qualitative study guided by the ICF

Introduction The Zika virus outbreak in Brazil has had devasting social, medical and financial consequences for families. Both researchers and clinicians are measuring longer-term outcomes to understand the impact of the Zika on child development, functioning and disability. Outcomes and tools used to measure them are very varied and we are unclear how meaningful they are to families and children. This study aimed to identify the parents’ perspectives on relevant areas of functioning and disability that should be included as outcome measures for children with congenital Zika syndrome (CZS), as guided by the International Classification of Functioning, Disability and Health (ICF).Methods This qualitative study included parents or caregivers of children aged 0–5 years with confirmed CZS from two states in northeastern Brazil. Interviews were conducted using focus groups. Content mapping followed the WHO’s ICF linking rules. Three raters analysed the content using NVivo V.11.Results Thirty-two caregivers participated in six focus groups, 88% were mothers with an average age of 30 years. Most children were male (59%) and all were level V (severe) to on the Gross Motor Function Classification System (GMFCS). Overall, 825 themes were mapped to 36 ICF categories. Although parents mentioned areas across all ICF domains, they reported that areas of mobility, eating and recreation were most relevant for them. In addition, environmental factors were highly identified as barriers, specifically services, policies and access to assistive devices. The most predominant facilitators within the environment were; immediate family support, kind relationships with therapists and support from the extended family.Conclusions Although parents emphasised issues related to mobility, their greatest concerns involved environmental factors, such as access and quality of health and social services, systems and policies. These results reinforce the importance of including parents’ perspectives when selecting or developing outcome measures for CZS

VIVÊNCIAS SINGULARES DE PROFISSIONAIS DE SAÚDE NA REDE E APOIO SOCIAL À CRIANÇA COM PARALISIA CEREBRAL

Objective: To gain knowledge on the experiences of health professionals in the social supportnetwork of children with cerebral palsy.Methodology: Descriptive study with a qualitative approach with eight mothers and onegrandmother in a school clinic and institution for disabled people, from October 2015 to May2016, through semi-structured interviews. Interpretation was based on thematic analysis andon the concepts of Emmanuel Lévinas.Results: The stress experienced by health professionals often affects the relationship healthteam-child and family, generating distrust and lack of commitment between them. Trustis placed in rehabilitation professionals and weakness is perceived in the relationship withprofessionals of the Family Health Strategy (ESF).Conclusion: The experiences of health professionals in the social support network for childrenwith cerebral palsy show that these professionals must respect the situations in which theOther is involved, in order to adjust treatment goals according to the needs of the Other.Objetivo: compreender as vivências dos profissionais de saúde na rede e apoio social à criança comparalisia cerebral.Metodologia: estudo descritivo, qualitativo, realizado com oito mães e uma avó em clínica escola einstituição à pessoa com deficiência, de outubro de 2015 a maio de 2016, por meio de entrevistasemiestruturada. Interpretação balizada pela análise temática e fundamentada nos conceitos deEmmanuel Lévinas.Resultados: é comum estresse dos profissionais afetando a relação equipe-criança e família,gerando desconfiança e falta de compromisso entre estes. Deposita-se confiança nos profissionaisde reabilitação e há fragilidade na relação com profissionais da Estratégia Saúde da Família.Conclusão: as vivências dos profissionais de saúde na rede e apoio social à criança com paralisiacerebral demonstram que esses devem respeitar as situações em que o Outro está enredado, demodo a ajustar as metas do tratamento de acordo com a necessidade do Outro.Objetivo: comprender las vivencias de los profesionales de salud en la red y apoyo social alniño con parálisis cerebral.Metodología: estudio descriptivo, cualitativo, que se realizó con ocho madres y una abuelaen clínica escuela e institución para personas con discapacidad, de octubre de 2015 a mayode 2016, por medio de entrevista semi estructurada. La interpretación fue hecha por análisistemática y fundamentada en los conceptos de Emmanuel Lévinas.Resultados: es común que el estrés de los profesionales afecten la relación equipo-niño yfamilia, lo que puede generar desconfianza y falta de compromiso entre estos. Hay confianzaen los profesionales de rehabilitación y fragilidad en la relación con profesionales de laEstrategia Salud de la Familia.Conclusión: las vivencias de los profesionales de salud en la red y apoyo social al niño conparálisis cerebral muestran que esos deben respetar las situaciones en que el Otro está, demodo a ajustar las metas del tratamiento de acuerdo a la necesidad del Otro

A PRESENÇA DO FISIOTERAPEUTA NA PUERICULTURA NO OLHAR DOS PROFISSIONAIS DE UMA UNIDADE DE SAÚDE DA FAMÍLIA

This work aimed to analyze the importance of the physiotherapist in Well-child care within a unity family healthcare according to the vision of the health professionals. A descriptive study with exploratory and qualitative approaches was conducted. For that, a survey was performed with twenty-five professionals from a unity family health care in João Pessoa city, Paraíba, Brazil. All of the respondents recognized the importance of the physiotherapist in Well-child care, and the analysis about the vision of the public on the role of the physiotherapist in that field allowed the organization of four categories: Early diagnosis and treatment of children; Prevention of diseases and other health problems; Orientation to mothers; and Evaluation of child development. Although the unity family healthcare chosen for this study does not present a physiotherapist within the multidisciplinary team, the professionals have realized that, the insertion of the physiotherapist for acting in well-childcare in partnership with the group would be of a great value, especially for the integrality of the children’s healthcare. Descriptors: Child Healthcare; Infant Healthcare; Physiotherapy; Primary Healthcare.Este estudo objetivou conhecer a importância da atuação do fisioterapeuta na puericultura, na visão dos profissionais de saúde de uma unidade de saúde da família.  Trata-se de um estudo descritivo, exploratório, com abordagem qualitativa. Foram entrevistados 25 profissionais de uma Unidade de Saúde da Família em João Pessoa, Paraíba. Todos entrevistados reconheceram a importância do fisioterapeuta na puericultura e a análise de conteúdo a respeito da visão destes sobre a atuação do fisioterapeuta na puericultura permitiu a organização de quatro categorias: Diagnóstico e tratamento precoce de crianças; Prevenção de doenças e outros agravos; Orientações às mães; e Avaliação do desenvolvimento das crianças. Apesar de não existir na unidade estudada o fisioterapeuta atuando com a equipe multidisciplinar, os profissionais desta unidade percebem que a inserção do fisioterapeuta junto à equipe atuando na puericultura seria de grande valor, principalmente para a integralidade do cuidado a saúde das crianças.  Descritores: Cuidado da Criança; Cuidado do Lactente; Fisioterapia, Atenção Primária à Saúde