722 resultados para partnership practice, intellectual disability, palliative care,questionnaires, interview
Resumo:
If many harmful effects of a sedentary lifestyle on health are well known, we still need to better understand how effectively promoting regular physical activity in the general population. Among the currently explored strategies, screening for sedentary lifestyle and promoting physical activity in the primary care setting seem promising. Despite recommendations from governmental agencies and professional associations in favor of physical activity counseling, this approach has not been widely adopted so far. This article summarizes the steps taken in Switzerland with an aim of developing physical activity counseling in the primary care setting. It describes how the early implication of primary care physicians influenced in a concrete way the development of a project dedicated to that task.
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Although interpersonal continuity is commonly assumed to be essential for care, some patients prefer to attend a university outpatient clinic where physicians change regularly and interpersonal continuity of care is not ensured. The aim of this exploratory study was to evaluate the differences between patients attending a university outpatient clinic and patients frequenting a private practice, explore their patterns of care-seeking and their understanding of continued care. We conducted a cross-sectional study of patients attending the university medical outpatient clinic (OC) in Lausanne, Switzerland and ten randomly selected private general practices (PP). Eligible patients were >30 years, Swiss nationals or long term residents, with one or more chronic conditions and attending the same practice for >3 years. They were asked to complete a questionnaire on sociodemographic data, use of medical resources and reasons for choosing and remaining at the same practice. Semi-structured interviews were conducted with a randomly selected subset of 26 patients to further explore their preferences. 329 patient questionnaires were completed, 219 by PP and 110 by OC patients. OC patients tended to be of lower socioeconomic status than PP patients. The main reason for choosing a PP were personal recommendation, while a higher percentage of patients chose the OC because they could obtain a first appointment quickly. A higher percentage of PP patients accorded importance to physician communication skills and trust, whereas a higher percentage of OC patients favoured investigation facilities. Qualitative data suggested that although OC and PP patients reported different reasons for consulting, their expectations on the medical and relationship level were similar. Our study suggests that the two groups of patients belong to different social backgrounds, have different patterns of care-seeking and attach importance to different aspects of care continuity. However, patients' expectations and perceptions of the physician-patient relationship are similar.
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In Switzerland, where assisted suicide but not euthanasia is permitted, the authors sought to understand how physicians integrate palliative sedation in their practice and how they reflect on existential suffering and death hastening. They interviewed 31 physicians from different care settings. Five major attitudes emerged. Among specialized palliative care physicians, convinced, cautious and doubtful attitudes were evident. Within unspecialized settings, palliative sedation was more likely to be considered as death hastening: clinicians either avoid it with an inexperienced attitude or practice it with an ambiguous attitude, raising the issue of unskilled and abusive uses of sedatives at the end of life.
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AIM: To present a protocol for a multi-phase study about the current practice of end-of-life care in paediatric settings in Switzerland. BACKGROUND: In Switzerland, paediatric palliative care is usually provided by teams, who may not necessarily have specific training. There is a lack of systematic data about specific aspects of care at the end of a child's life, such as symptom management, involvement of parents in decision-making and family-centred care and experiences and needs of parents, and perspectives of healthcare professionals. DESIGN: This retrospective nationwide multicentre study, Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN), combines quantitative and qualitative methods of enquiry. METHODS: The PELICAN study consists of three observational parts, PELICAN I describes practices of end-of-life care (defined as the last 4 weeks of life) in the hospital and home care setting of children (0-18 years) who died in the years 2011-2012 due to a cardiac, neurological or oncological disease, or who died in the neonatal period. PELICAN II assesses the experiences and needs of parents during the end-of-life phase of their child. PELICAN III focuses on healthcare professionals and explores their perspectives concerning the provision of end-of-life care. CONCLUSION: This first study across Switzerland will provide comprehensive insight into the current end-of-life care in children with distinct diagnoses and the perspectives of affected parents and health professionals. The results may facilitate the development and implementation of programmes for end-of-life care in children across Switzerland, building on real experiences and needs. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT01983852.
Resumo:
Un certain nombre de patients palliatifs en fin de vie présentent des symptômes qui ne peuvent pas être soulagés malgré la mise en oeuvre de tous les moyens traditionnels à disposition. Pour ces patients, lorsque des symptômes réfractaires induisent une souffrance intolérable, la sédation palliative est un moyen de dernier recours qui peut leur offrir un soulagement transitoire ou même définitif. Tout en présentant les enjeux éthiques, cet article explore les dimensions cliniques d'ordre pratique qui peuvent se présenter lors d'une sédation palliative chez un patient en fin de vie. Patients at the end-of-life may present with refractory symptoms which cannot be adequately relieved despite the use of all traditional means. When refractory symptoms lead to intolerable suffering, palliative sedation is a last recourse temporary or definitive treatment. While discussing ethical issues, clinical practice dimensions of palliative sedation are explored in this article
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While there has been a recent shift away from isolated, institutionalized living conditions, persons with Intellectual Disabilities (ID) may still experience restricted access to choice when it comes to making decisions about the basic aspects of their lives. A tension remains between protecting individuals from harm and promoting their right to independence and personal liberties. This tension creates complex questions and ethical concerns for care providers supporting persons with ID. This study explored the ethical decision-making processes of care providers and specifically, how care providers describe the balance of protecting supported individuals from harm while promoting their right to self-determination. Semi-structured interviews were conducted with six care providers employed by a local community agency that supports young and older adults with ID. Data were analysed using thematic analysis and broader themes were developed following phases of open and selective coding. Results indicated that care providers described ethical decision-making processes as frequent, complex, subjective, and uncomfortable. All participants described the importance of promoting independent decision-making among the individuals they support and assisting supported individuals to make informed decisions. Participants also reported work colleagues and supervisors as primary sources of information when resolving ethical concerns. This suggests that complex ethical decision-making processes are being taken seriously by care providers and supervising staff. The results of this study are well-positioned to be applied to the development of a training program for frontline care providing staff supporting individuals in community care settings.
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Abstract Despite the plethora of published studies on rights, including employment rights, for persons with intellectual disabilities (Hatton, 2002; Tarulli, et al., 2004; Ward & Stewart, 2008), relatively few have discussed their applicability to individuals with intellectual disabilities to facilitate their full involvement in socio-economic development. This study explored the mechanisms facilitating and inhibiting the full participation of persons with intellectual disabilities in the area of employment through a comparative case analysis of policies and practices in Ontario, Canada (a developed country) and in Ghana (a developing country) both of which are signatories to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). The study employed targeted recruitment based on the nature of the research which is a combination of policy and practice investigation.
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Sustainability of change for improvement initiatives has been widely reported as a global challenge both within and outside health care settings. The purpose of this study was to examine the extent to which factors related to staff training and involvement, staff behaviour, and clinical leaders’ and senior leaders’ engagement and support impact the long term sustainability of practice changes for BPSO health care organizations who have implemented Registered Nursing Association of Ontario’s (RNAO) Best Practice Guidelines. Semi structured interviews with eleven organizational leaders’ from ten health care organizations were conducted to explore the unique experiences, views and perspectives on factors related to staff, clinical leaders and senior leaders and their involvement and impact on the long term sustainability of clinical practice changes within organizations who had implemented Registered Nursing Association of Ontario’s (RNAO) Best Practice Guidelines (BPGs). The interviews were coded and analyzed using thematic content analysis. Further analysis identified patterns and themes in relation to: 1. The National Health Service (NHS) Sustainability Model which was used as the theoretical framework for this research; and 2. Organizations found to have sustained practice changes longer term verses organizations that did not. Six organizations were found to have sustained practice changes while the remaining four were found to have been unsuccessful in their efforts to sustain the changes. Five major findings in relation to sustainability emerged from this study. First is the importance of early and sustained engagement and frontline staff, managers, and clinical leaders in planning, implementation and ongoing development of BPGs through use of working groups and champions models. Second is the importance of ongoing provision of formal training, tools and resources to all key stakeholders during and after the implementation phase and efforts made to embed changes in current processes whenever possible to ensure sustainability. Third is to ensure staff and management are receptive to the proposed change(s) and/or have been given the necessary background information and rationale so they understand and can support the need for the change. Fourth is the need for early and sustained fiscal and human resources dedicated to supporting BPG implementation and the ongoing use of the BPGs already in place. Fifth is ensuring clinical leaders are trusted, influential, respected and seen as clinical resources by frontline staff. The significance of this study lies in a greater understanding of the influence and impact of factors related to staff on the long term sustainability of implemented practice changes within health care organizations. This study has implications for clinical practice, policy, education and research in relation to sustainability in health care.
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La présente recherche a pour objet la pratique orthophonique en suppléance à la communication (SC) auprès de personnes qui ont une déficience intellectuelle (DI). Des recherches ont montré que les aides à la communication à sortie vocale (ACSV) pouvaient améliorer la communication des personnes ayant une DI. Cependant, la plupart de ces recherches ont été menées dans des conditions idéales qui ne reflètent pas nécessairement celles que l’on retrouve dans les milieux cliniques typiques. On connaît peu de choses sur les pratiques professionnelles en SC auprès des personnes ayant une DI. Le but de cette recherche est de décrire la pratique orthophonique, de documenter les perspectives des utilisateurs sur les résultats des interventions et de décrire l’implication des parents et leurs habiletés à soutenir leur enfant dans l’utilisation d’une ACSV afin de proposer un modèle d’intervention en SC auprès de cette clientèle qui tienne compte de ces différentes perspectives. Une méthode qualitative a été choisie pour réaliser la recherche. Des entrevues individuelles semi-structurées ont été réalisées avec onze orthophonistes francophones et avec des parents ou familles d’accueil de dix utilisateurs d’ACSV et des entrevues structurées ont été menées avec huit utilisateurs d’ACSV. Un outil d’entrevue a été conçu à l’aide de pictogrammes pour permettre aux utilisateurs d’ACSV de répondre à des questions portant sur leur appréciation et utilisation de leur ACSV, leur satisfaction et priorités de communication. Un cadre conceptuel a été conçu à partir des guides de pratique clinique et un codage semi-ouvert a été utilisé pour réaliser les analyses thématiques des données provenant des orthophonistes. Un codage ouvert a servi à analyser les données provenant des parents. Des analyses descriptives ont servi à examiner les réponses des utilisateurs. Diverses procédures ont assuré la crédibilité des analyses. Entre autres, les analyses des entrevues des orthophonistes ont été validées lors d’un groupe de discussion avec sept participantes orthophonistes. Les résultats montrent que les ACSV sont utilisées surtout dans le milieu scolaire. Elles sont parfois utilisées lors des loisirs et dans la communauté, mais ces contextes sont ceux où les utilisateurs ont exprimé le plus d’insatisfaction et où se situe la majeure partie des priorités qu’ils ont identifiées. Les analyses ont permis d’identifier les facteurs qui rendent compte de ces résultats. Les orthophonistes manquent d’outils pour réaliser des évaluations exhaustives des capacités des clients et elles manquent de procédures pour impliquer les parents et obtenir d’eux une description complète des besoins de communication de leur enfant. Conséquemment, l’ACSV attribuée et le vocabulaire programmé ne répondent pas à l’ensemble des besoins de communication. Certaines orthophonistes manquent de connaissances sur les ACSV ou n’ont pas le matériel pour faire des essais avec les clients. Il en résulte un appariement entre la personne et l’ACSV qui n’est pas toujours parfait. À cause d’un manque de ressources en orthophonie, les parents sont parfois laissés sans soutien pour apporter les changements à la programmation lors des transitions dans la vie de leur enfant et certains ne reçoivent pas d’entraînement visant à soutenir l’utilisation de l’ACSV. Un modèle d’intervention en SC est proposé afin d’améliorer la pratique orthophonique auprès de cette population.
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L'objectif de ce projet de recherche était d'approfondir notre compréhension des liens entre communauté et cinéma, rendus possibles par et pour le film documentaire, à travers l'analyse des interactions entre le cinéaste, la personne filmée et le spectateur. L'expérience cinématographique sera analysée d'une part en tant que pratique sociale à travers la prise en considération du contexte de production des films. D'autre part, le film sera aussi considéré comme expérience imaginaire de sociabilité. Les trois films de notre corpus s'intéressent à des expériences communautaires atypiques et mettent en scène des relations fragiles et précaires avec des personnes souffrant de troubles sociaux majeurs, c'est-à-dire des psychotiques, des déficients intellectuels profonds ou des autistes. C'est à partir de l'expérience de l'apparente insociabilité de ces individus que nous réfléchirons au lien d'accompagnement ainsi qu'au concept de care qui seront envisagés, aussi, comme pouvant traduire la relation particulière qui a lieu entre le spectateur et le film. En effet, le cinéma permet l'élaboration d'une expérience relationnelle construite dans les œuvres médiatiques. Le dispositif filmique donne l'occasion au spectateur d'expérimenter des postures morales et affectives nouvelles. Nous tiendrons compte, au cours de ce mémoire, de la façon dont les choix esthétiques du cinéaste peuvent éduquer et faire évoluer la sensibilité du spectateur. Nous essaierons aussi de souligner les différents jeux de pouvoir et d'influence entre les trois instances que sont le cinéaste, la personne filmée et le spectateur. Après avoir décrit le cadre et les enjeux théoriques du projet, le premier chapitre concernera le film La Moindre des choses (1996) dans lequel Nicolas Philibert filme, jour après jour, les pensionnaires de la clinique psychiatrique de la Borde. Ce film nous a servi de prétexte pour penser ou repenser la place du spectateur comme étant inclus dans la relation entre le cinéaste et la personne filmée et cela à partir de cette phrase d'un des protagonistes du film : « On est entre nous, mais vous aussi, vous êtes entre nous. » Le deuxième chapitre s'intéressera au film Ce Gamin là (1985) de Renaud Victor qui cherche à faire voir au spectateur ce que le projet de Fernand Deligny de vivre dans les Cévennes en compagnie d'enfants autistes a d'original et de particulier. Nous pensons que l'enfant autiste nous amène à dépasser nos expériences de sociabilités habituelles. Le lien d'accompagnement d'enfants autistes, puisque toujours fragile et précaire, révèle quelque chose sur nos façons d'avoir du commun. L'étude des médias et de la médiation est pertinente parce qu'elle nous permet de multiplier et de diversifier les modes de communications. Dans Ce Gamin-là, bien que les images permettent au cinéaste de rendre compte de l'événement d'un contact, l'accent sera mis sur l'analyse du commentaire de Deligny, puisqu'il accompagne le spectateur dans l'appréhension d'une réalité qui lui est étrangère. Ce film nous a aussi appris que l’étude des techniques utilisées nous renseigne sur les différentes façons de dire ou de montrer un lien communautaire, affectif ou social particulier. Le Moindre Geste (1971) qui permet à Yves Guignard, déficient intellectuel sévère, de devenir le héros d'un film, se distingue des deux autres films de par la distinction radicale entre les deux étapes du tournage et du montage. Le troisième chapitre se concentrera, d'une part, sur l'analyse de la relation qui se développe entre Yves et Josée Manenti à la caméra. Ensuite, nous verrons de quelle façon le jeu du montage de Jean-Pierre Daniel laisse une grande liberté à Yves, mais aussi au spectateur en multipliant les possibilités d'interprétations.
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The relationship between disability and poverty has been described in different contexts. Nevertheless, the basic characteristics of this relationship have not yet been fully established. The social exclusion and discrimination against people with disabilities increase the risk of poverty and reduce the access to basic opportunities such as health and education. This study examines the impact of a health limitation and poverty in the access to health care services in Colombia. Data from the Colombian National Health Survey (2007) was used in the analysis. Variables related with health condition and socio economic characteristics were first generated. Then interactions between health limitations and the lower levels of the asset index were created. This variable gave information related to the relationship between disability and poverty. A probabilistic model was estimated to examine the impact of a health condition and the relation between poverty and disability on the access to health care. The results suggest that living with a physical limitation increases by 10% the probability of access to health care services in Colombia. However, people with a disability and in the lowest quartile of the asset index have a 5% less probability of access to health care services. We conclude that people who live with a physical, mental or sensorial limitation have a higher probability of access to health care services. However, poor and disabled people have a lower probability in access, which increases the risk of having a severe disease and become chronically poor.
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El trastorno de hiperactividad y déficit de atención (THDA), es definido clínicamente como una alteración en el comportamiento, caracterizada por inatención, hiperactividad e impulsividad. Estos aspectos son clasificados en tres subtipos, que son: Inatento, hiperactivo impulsivo y mixto. Clínicamente se describe un espectro amplio que incluye desordenes académicos, trastornos de aprendizaje, déficit cognitivo, trastornos de conducta, personalidad antisocial, pobres relaciones interpersonales y aumento de la ansiedad, que pueden continuar hasta la adultez. A nivel global se ha estimado una prevalencia entre el 1% y el 22%, con amplias variaciones, dadas por la edad, procedencia y características sociales. En Colombia, se han realizado estudios en Bogotá y Antioquia, que han permitido establecer una prevalencia del 5% y 15%, respectivamente. La causa específica no ha sido totalmente esclarecida, sin embargo se ha calculado una heredabilidad cercana al 80% en algunas poblaciones, demostrando el papel fundamental de la genética en la etiología de la enfermedad. Los factores genéticos involucrados se relacionan con cambios neuroquímicos de los sistemas dopaminérgicos, serotoninérgicos y noradrenérgicos, particularmente en los sistemas frontales subcorticales, corteza cerebral prefrontal, en las regiones ventral, medial, dorsolateral y la porción anterior del cíngulo. Basados en los datos de estudios previos que sugieren una herencia poligénica multifactorial, se han realizado esfuerzos continuos en la búsqueda de genes candidatos, a través de diferentes estrategias. Particularmente los receptores Alfa 2 adrenérgicos, se encuentran en la corteza cerebral, cumpliendo funciones de asociación, memoria y es el sitio de acción de fármacos utilizados comúnmente en el tratamiento de este trastorno, siendo esta la principal evidencia de la asociación de este receptor con el desarrollo del THDA. Hasta la fecha se han descrito más de 80 polimorfismos en el gen (ADRA2A), algunos de los cuales se han asociado con la entidad. Sin embargo, los resultados son controversiales y varían según la metodología diagnóstica empleada y la población estudiada, antecedentes y comorbilidades. Este trabajo pretende establecer si las variaciones en la secuencia codificante del gen ADRA2A, podrían relacionarse con el fenotipo del Trastorno de Hiperactividad y el Déficit de Atención.
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This study aims to: 1) assess the proportion of General Practioners (GPs) who are aware of or who have read the National Institute for Health and Clinical Excellence (NICE; 2005a) guidelines for Obsessive Compulsive Disorder (OCD), 2) compare this with the proportion of other mental health disorders found by previous research and 3) establish the prevalence of OCD in primary care. Questionnaires were sent to all GPs (n = 795) and practice managers (n = 157) in Berkshire and Buckinghamshire, South East England. These contained 19 questions and took 5 min to complete. After the first set of responses, larger practices were visited and telephoned to encourage further responses. The response rates were 10.1% from GPs and 19.1% from practice managers. In all, 48.7% of the GPs were aware of the NICE guidelines for OCD and 30.3% reported that they had read them – higher than for Post-Traumatic Stress Disorder, but lower than for depression. Of registered patients, 0.2% were diagnosed with OCD, lower than the 1.1% found in epidemiological studies.