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Introduction: Dementia is a syndrome due to disease of the brain, usually of a chronic nature, in which there is disturbance of multiple higher cortical functions including Memory, Comprehension, Thinking, Judgment, Orientation, language and communication skills and abstract thinking. It is one of the most challenging disorders both in terms of prevalence and economic burden. There are currently approximately 800,000 people with dementia in UK and national cost is 17 billion per year. It is estimated that in next thirty years, number of people with dementia will increase to 1.4 million and the national cost will be over 50 billion. The exceptional advances in modern medicine in terms of prolonging life expectancy do not necessarily improve the care delivered to people with dementia. Dementia is a progressive condition where clinical recovery is not possible despite the discovery of cognition enhancing drugs. This belief leads to low expectations that tend to erode hope and foster indignity. Advances in treatment of Alzheimer’s disease have, however, stimulated new thinking and methods of service delivery. At certain stage of their illness, if not from the very beginning, personal, and social recovery becomes more meaningful for service users than their clinical recovery. Objective: To investigate whether recovery-orientated psychiatric assessment and therapeutic intervention enhances the wellbeing of people with memory problems and their family carers. Method: This study was a preliminary randomised control study. Patients were randomly allocated to recovery focus group or treatment as usual group acting as the control. Participants in the recovery focus group received a recovery-focused pre-diagnostic wellbeing assessment and counselling, diagnostic consultation with written feedback and post-diagnostic support over a period of six months. Participants in both groups were assessed using the WHO Wellbeing Index (WHO-5) as the primary outcome measure. The Mini Mental State Examination, Cornell Scale for Depression in Dementia, EuroQol-5D and Zarit Burden Interview were used as secondary outcome measures. Written records of the narrative accounts of participants in the recovery focus group were also obtained. Results: 48 patients with early dementia were recruited and agreed to take part in the study. Out of these, 34 patients completed the study, of which 17 patients were in the recovery focus group and 17 patients were in the treatment as usual group (control).There was a significant difference between the groups in terms of greater improvement in wellbeing as rated by the WHO – 5 Wellbeing Index in the recovery focus group compared to the control group. The secondary outcome measures in the areas of cognition, quality of life and caregiver burden showed no differences between the groups. However, case histories from the recovery focus group identified the main areas of improvement in improved mood, increased social interaction, reduction in carer strain and/or burden and improved self-worth and/or confidence. Conclusions: This study shows that recovery focused care can enhance the wellbeing of people with mild to moderate dementia. The additional benefits perceived by the patients and their relatives /carers include improvement in mood symptoms, social interaction and confidence as well as reduction in carer burden and strain.

Οι χρόνιες και ανίατες ασθένειες όπως η Σκλήρυνση κατά πλάκας, δημιουργούν βιοηθικό δίλλημα στα μάτια του κλινικού γιατρού, όταν έρχεται αντιμέτωπος με τη διάγνωση και την ανάγκη του ασθενούς για ενημέρωση. Τα τελευταία χρόνια έχει πραγματοποιηθεί στη χώρα μας στροφή στα δυτικά πρότυπα και πλέον ο ασθενής ενημερώνεται για την πάθηση του, όσο και αν αυτή θεωρείται ανίατη. Επιπλέον η εισαγωγή, στο χώρο της θεραπευτικής της ΣΚΠ, των ανοσοτροποιητικών επιβάλλει την πρώιμη και πλήρη ενημέρωση του ασθενούς. Σύμφωνα με τον κώδικα ιατρικής δεοντολογίας «ο ιατρός έχει καθήκον αληθείας προς τον ασθενή». Οι αρχές της σύγχρονης βιοηθικής: η αρχή του «ωφελέειν», η αρχή της αυτονομίας του ασθενούς και η αρχή της δικαιοσύνης συνηγορούν με τα αποτελέσματα της παρούσας μελέτης. Ο ασθενής όταν έρχεται αντιμέτωπος με την οδυνηρή αλήθεια αντιδρά αρχικά με άρνηση, αλλά αυτό αποτελεί μέρος της διαδικασίας προσαρμογής του στην νέα πραγματικότητα. Επομένως ο γιατρός οφείλει να αναγνωρίζει και να συμφιλιώνεται με τα μεταβατικά αυτά στάδια, ώστε να προσαρμόζει ανάλογα τον τρόπο με τον οποίο αποκαλύπτει τη διάγνωση. Στην παρούσα μελέτη καταγράψαμε τις απόψεις και επιθυμίες των ασθενών και των θεραπόντων νευρολόγων, ώστε να προσεγγίσουμε ποια κατεύθυνση είναι καλύτερη για τον σύγχρονο νευρολόγο. Αρχικά στείλαμε ερωτηματολόγια στα μέλη της Ελληνικής Εταιρείας της ΣΚΠ (1200) και κατόπιν στα μέλη της Ελληνικής Νευρολογικής εταιρείας (580), αναζητώντας την άποψη των ασθενών και των νευρολόγων αντίστοιχα, για την ανάγκη πλήρους ενημέρωσης των ασθενών, τα θέματα εμπιστοσύνης προς τον γιατρό, που προκύπτουν από την έλλειψη ενημέρωσης, την συμμετοχή των συγγενών και άλλες παρατηρήσεις. Το 55% (657) των ασθενών και το 37,41% (217) των νευρολόγων, απάντησαν αντίστοιχα. 91% των ασθενών και 94,9% των γιατρών υποστηρίζουν την άμεση ενημέρωση του ασθενούς σε περίπτωση βέβαιης διάγνωσης. Από τους ασθενείς μόνο το 44% είχε την εμπειρία της έγκαιρης ανακοίνωσης της διάγνωσης, το 29% πληροφορήθηκαν τη διάγνωση σε διάστημα 1-3 ετών, ενώ το 27% πολύ αργότερα. Το 73,6% των νευρολόγων απαντούν ότι ενημερώνουν άμεσα τον ασθενή, αλλά μόνο το 41,7% χρησιμοποιούν τον όρο Σκλήρυνση κατά πλάκας. Σύμφωνα με τους νευρολόγους η χρονική στιγμή της ανακοίνωσης της διάγνωσης, εξαρτάται από την ιδιοσυγκρασία του ασθενούς, κυρίως (62,5%). Οι περισσότεροι νευρολόγοι (78,7%) ανακοινώνουν τη διάγνωση στους συγγενείς, αλλά με την παρουσία του ασθενούς. Η απόκρυψη της διάγνωσης από τον γιατρό οδηγεί σε απώλεια της εμπιστοσύνης του ασθενούς προς αυτόν (76,8%), σύμφωνα με τις απαντήσεις των πασχόντων. Αντίθετα το 59,5% των νευρολόγων πιστεύουν ότι σε αυτή την περίπτωση οι ασθενείς δεν χάνουν την εμπιστοσύνη τους. Οι μέχρι σήμερα μελέτες υποστηρίζουν παρόμοια αποτελέσματα, αν και αφορούν πολύ μικρότερα δείγματα και έχουν γίνει σε λίγες ευρωπαϊκές χώρες. Με βάση τα προαναφερόμενα οι νευρολόγοι οφείλουν να γίνουν περισσότερο σκεπτικοί στην πρακτική τους όταν παραπλανούν, κατά την γνωστοποίηση της διάγνωσης, τον ασθενή με διάφορους τρόπους και να καθιερώσουν καθολικά αποδεκτές φόρμες, που θα προσαρμόζουν στον εκάστοτε ασθενή. Αυτό απαιτεί και ανάλογη εκπαίδευση των γιατρών κατά τα φοιτητικά και μεταπτυχιακά τους χρόνια. / Chronic and incurable diseases such as multiple sclerosis, create a bioethical issue in the eyes of the clinician, when confronted with the diagnosis and the patient's need for information. During the last years, there has been a trend toward to Western standards, now the patient is being informed of his condition, even if it is considered incurable. Moreover, the introduction of immunomodifying agents into the therapeutic arena of MS, requires early and complete patient information. According to the code of medical ethics «the physician has a duty to the patient of disclosing the truth». The principles of contemporary bioethics: the principle of «benefiting», the principle of patient autonomy and the principle of justice argue with the results of this work. The patient, when confronted with the painful truth, initially reacts with denial, but this is part of the adaptation process to the new reality. Therefore, the physicians must recognize and reconcile with the transitional stages of the patient to adjust the way they reveal the diagnosis. In this work, we studied the views and wishes of patients and treating neurologists, towards what direction is best for the latter. Initially, we sent out 1200 questionnaires to members of the Greek Society of MS and then 580 to members of the Greek Neurological Society , seeking the views of patients and neurologists, respectively, to the need for full patient disclosure, issues of trust in the doctor resulting from the lack of information, the involvement of relatives and other observations. Accordingly, 55% (657) of the patients and 37.41% (217) of the neurologists responded, respectively. 91% of the patients and 94.9% of the doctors support direct patient information when definite diagnosis is made. Of the patients, only 44% had an experience of announcing the diagnosis, 29% learned of the diagnosis within 1-3 years, while 27% much later. 73.6% of the neurologists that replied inform the patient directly, but only 41.7% use the term multiple sclerosis. According to neurologists, the timing of disclosure of the diagnosis mainly depends on the personality of the patient (62.5%). Most neurologists (78.7%) announce the diagnosis to relatives, but with the presence of the patient. The concealment of the diagnosis by a doctor leads to a loss of confidence on behalf of the patient (76.8%), according to the responses of patients. In contrast, 59.5% of neurologists believe that in this case patients do not lose confidence. Past studies support similar results, although on much smaller samples, and have been conducted in a few European countries. On this basis, neurologists ought to be more skeptical in their practice when they are misleading the patient in different ways, during the communication of the diagnosis. They also need to establish universally acceptable forms, matched to each patient. This requires appropriate training during academic years.

La recherche en génétique est en pleine effervescence, créant ainsi plus d’information sur la susceptibilité génétique à certaines maladies et sur la préventions et les traitements potentiels. Nombre de ces informations sont considérées exploratoires et donc sans utilité clinique. Les directives officielles, qui prônent une divulgation des résultats globaux, tendent également de plus en plus vers la communication des résultats individuels quand ils sont disponibles et applicables. On parle même « d’impératif éthique » de la part du chercheur à retourner les résultats de recherche aux participants. La tâche, cependant, ne s’avère pas si simple et ce devoir moral émergent suscite de nombreuses questions, dont la responsabilité de retourner l'information, le moment, le contenu de l’information, le respect du droit du participant de ne pas savoir. Par cette étude, l’opinion et les attentes des participants à la recherche sont investiguées. Il s’agit plus précisément de documenter de façon empirique les attentes des parents d’enfants autistes qui ont fait participer leur enfant à une étude génétique sur l’autisme. Il est essentiel et important d’explorer leurs besoins et leurs attentes concernant la façon dont ils aimeraient qu’on les informe sur les résultats de l'étude et plus spécifiquement sur les résultats qui les concernent. Le but de cette étude est de proposer une réflexion éthique sur le retour d’information aux participants à la recherche. Est-ce une responsabilité éthique? Un droit? La divulgation des résultats généraux ou individuels de recherche aux participants constitue un véritable défi résultant des grandes attentes entourant la recherche en génétique et de la situation de vulnérabilité dans laquelle se retrouvent les participants à la recherche. / Genetics studies are becoming increasingly prevalent leading to a growing body of information on disease susceptibility with the potential to improve health care. Many of these results are considered exploratory with no clinical utility. Official guidelines in ethics, advocating a disclosure of global results, also tend increasingly towards the communication of individual results when available and applicable if the research participant choose so. An "ethical imperative" to return research results is increasingly acknowledged in research ethics guidelines. This emerging moral duty raises many questions including the issue of whether and how research participants might receive their individual results. In this study, we explore the perspectives of parents of an autistic child participating in genetic research. It is essential and important to explore their needs and expectations about how they would like to be delivered research results. The purpose of this study is to propose an ethical reflexion on providing individual genetic research results to participants: is there a duty ? a right ? Providing individual genetic research results to participants is a key challenge. We expect to find major challenges in matters of return of result given both the high expectations surrounding genetic research and the vulnerable state of some patients/research participants.

La recherche en génétique est en pleine effervescence, créant ainsi plus d’information sur la susceptibilité génétique à certaines maladies et sur la préventions et les traitements potentiels. Nombre de ces informations sont considérées exploratoires et donc sans utilité clinique. Les directives officielles, qui prônent une divulgation des résultats globaux, tendent également de plus en plus vers la communication des résultats individuels quand ils sont disponibles et applicables. On parle même « d’impératif éthique » de la part du chercheur à retourner les résultats de recherche aux participants. La tâche, cependant, ne s’avère pas si simple et ce devoir moral émergent suscite de nombreuses questions, dont la responsabilité de retourner l'information, le moment, le contenu de l’information, le respect du droit du participant de ne pas savoir. Par cette étude, l’opinion et les attentes des participants à la recherche sont investiguées. Il s’agit plus précisément de documenter de façon empirique les attentes des parents d’enfants autistes qui ont fait participer leur enfant à une étude génétique sur l’autisme. Il est essentiel et important d’explorer leurs besoins et leurs attentes concernant la façon dont ils aimeraient qu’on les informe sur les résultats de l'étude et plus spécifiquement sur les résultats qui les concernent. Le but de cette étude est de proposer une réflexion éthique sur le retour d’information aux participants à la recherche. Est-ce une responsabilité éthique? Un droit? La divulgation des résultats généraux ou individuels de recherche aux participants constitue un véritable défi résultant des grandes attentes entourant la recherche en génétique et de la situation de vulnérabilité dans laquelle se retrouvent les participants à la recherche. / Genetics studies are becoming increasingly prevalent leading to a growing body of information on disease susceptibility with the potential to improve health care. Many of these results are considered exploratory with no clinical utility. Official guidelines in ethics, advocating a disclosure of global results, also tend increasingly towards the communication of individual results when available and applicable if the research participant choose so. An "ethical imperative" to return research results is increasingly acknowledged in research ethics guidelines. This emerging moral duty raises many questions including the issue of whether and how research participants might receive their individual results. In this study, we explore the perspectives of parents of an autistic child participating in genetic research. It is essential and important to explore their needs and expectations about how they would like to be delivered research results. The purpose of this study is to propose an ethical reflexion on providing individual genetic research results to participants: is there a duty ? a right ? Providing individual genetic research results to participants is a key challenge. We expect to find major challenges in matters of return of result given both the high expectations surrounding genetic research and the vulnerable state of some patients/research participants.

Introdução - O aconselhamento é a estratégia escolhida pela Organização Mundial da Saúde para o combate à epidemia de aids por ser um método de ajuda, apoio e prevenção. Objetivo - Analisar as características das interações aconselhador-cliente no processo da revelação do diagnóstico positivo para HIV em dois Centros de Testagem e Aconselhamento em DST e Aids do Município de São Paulo, com base na versão dos clientes e tomando por referência suas repercussões sobre os procedimentos e resultados da atividade. Métodos - Como técnica de coleta para o levantamento de dados, foi utilizada a entrevista em momento posterior ao aconselhamento pós-teste. No total, foram realizadas 20 entrevistas, sendo 14 os sujeitos de pesquisa. Todos os entrevistados eram do sexo masculino. Os critérios escolhidos para inclusão no estudo foram: ter 18 anos ou mais; ter resultado positivo no teste anti-HIV; e ter participado do processo de revelação do diagnóstico de infecção pelo HIV nos serviços pesquisados. Para organizar os dados, a autora utilizou a técnica de análise de conteúdo por entrevista e por tema, construindo categorias analíticas segundo os objetivos do estudo. Os dados foram analisados e interpretados por meio da utilização de conceitos da teoria psicanalítica de D.W.Winnicott. Resultados - Com base nos relatos, considera-se que os profissionais seguem bem o protocolo do aconselhamento, atingindo seus objetivos de: a) lidar com os sentimentos provocados pelo diagnóstico positivo para o HIV; b) dar ao cliente a oportunidade de expressar seu sofrimento e angústia; c) sustentar as dificuldades de compartilhar a notícia com familiares e parceiros; e d) tirar dúvidas sobre prevenção de DST/HIV e sobre a terapia antiretroviral. Os contextos de aconselhamento investigados caracterizaram-se pelas interações de ajuda e suporte para a maioria dos entrevistados, funcionando como realidade compartilhada e dando sustentação para seus sentimentos e preocupações. Entretanto, alguns clientes sentiram falta de espaço para discussão e de mais tempo para abordarem questões pessoais, além daquelas relacionadas à sua nova condição de portadores do HIV. Conclusões - Na versão dos clientes, os aconselhadores os acolhem, informam e apóiam em suas necessidades. A análise revelou os processos psicológicos que operaram no momento do aconselhamento pós-teste entre o sujeito de pesquisa e o aconselhador. A escuta do cliente é a condição primordial para que o ambiente de compartilhamento se instale. O estudo fornece subsídios para melhorar a qualidade deste serviço prestado à população. / Introduction - Counseling is the strategy chosen by the World Health Organization against the aids epidemic since it is a method for help, support and prevention. Objective - To analyze the characteristics of counselor-subject interactions within the process of disclosing the positive diagnosis for HIV in two STD and Aids Counseling and Testing Centers in the city of São Paulo, according to the subjects’ version and based on their repercussions of the activity's procedures and results. Methods - The technique used to gather data was the interview, performed after the counseling moment when test result was communicated. In total, 20 interviews were carried with 14 research subjects. All interviewed were men. The criteria chosen to include a subject in the research were: greater than 18 years of age; positive for HIV; and having received the positive diagnosis for HIV at the researched CTC. In order to organize the data, the author used the technique of analysis of content by interview and by theme, elaborating analytical categories based on the study objectives. The data was interpreted using the concepts of the psychoanalytical theory of D. W. Winnicott. Results - Based on the subjects’ reports, it is considered that professionals follow the protocol for counseling, reaching its objectives, which are: a) dealing with feelings caused by the diagnosis; b) providing the opportunity to the subjects to express their suffering and anxiety; c) surpassing difficulties sharing the diagnosis with their family and partners; and d) clarifying questions about STD/HIV prevention and therapy. In the investigated counseling the interactions were characterized by the support and assistance for most of the subjects, acting as a shared reality and providing support to their feelings and concerns. However, some subjects felt the need for more time to discuss their feelings and personal issues, besides the ones related to their new HIV carrier condition. Conclusions - In the subjects’ version, the counselors welcome them, provide information and support for their needs. The study revealed the psychological processes occurred during the post-test counseling between the subject and the counselor. Listening to the subject is the primary condition to establish a sharing environment. The study provides data to improve the service currently available to the population.

Introdução - O aconselhamento é a estratégia escolhida pela Organização Mundial da Saúde para o combate à epidemia de aids por ser um método de ajuda, apoio e prevenção. Objetivo - Analisar as características das interações aconselhador-cliente no processo da revelação do diagnóstico positivo para HIV em dois Centros de Testagem e Aconselhamento em DST e Aids do Município de São Paulo, com base na versão dos clientes e tomando por referência suas repercussões sobre os procedimentos e resultados da atividade. Métodos - Como técnica de coleta para o levantamento de dados, foi utilizada a entrevista em momento posterior ao aconselhamento pós-teste. No total, foram realizadas 20 entrevistas, sendo 14 os sujeitos de pesquisa. Todos os entrevistados eram do sexo masculino. Os critérios escolhidos para inclusão no estudo foram: ter 18 anos ou mais; ter resultado positivo no teste anti-HIV; e ter participado do processo de revelação do diagnóstico de infecção pelo HIV nos serviços pesquisados. Para organizar os dados, a autora utilizou a técnica de análise de conteúdo por entrevista e por tema, construindo categorias analíticas segundo os objetivos do estudo. Os dados foram analisados e interpretados por meio da utilização de conceitos da teoria psicanalítica de D.W.Winnicott. Resultados - Com base nos relatos, considera-se que os profissionais seguem bem o protocolo do aconselhamento, atingindo seus objetivos de: a) lidar com os sentimentos provocados pelo diagnóstico positivo para o HIV; b) dar ao cliente a oportunidade de expressar seu sofrimento e angústia; c) sustentar as dificuldades de compartilhar a notícia com familiares e parceiros; e d) tirar dúvidas sobre prevenção de DST/HIV e sobre a terapia antiretroviral. Os contextos de aconselhamento investigados caracterizaram-se pelas interações de ajuda e suporte para a maioria dos entrevistados, funcionando como realidade compartilhada e dando sustentação para seus sentimentos e preocupações. Entretanto, alguns clientes sentiram falta de espaço para discussão e de mais tempo para abordarem questões pessoais, além daquelas relacionadas à sua nova condição de portadores do HIV. Conclusões - Na versão dos clientes, os aconselhadores os acolhem, informam e apóiam em suas necessidades. A análise revelou os processos psicológicos que operaram no momento do aconselhamento pós-teste entre o sujeito de pesquisa e o aconselhador. A escuta do cliente é a condição primordial para que o ambiente de compartilhamento se instale. O estudo fornece subsídios para melhorar a qualidade deste serviço prestado à população. / Introduction - Counseling is the strategy chosen by the World Health Organization against the aids epidemic since it is a method for help, support and prevention. Objective - To analyze the characteristics of counselor-subject interactions within the process of disclosing the positive diagnosis for HIV in two STD and Aids Counseling and Testing Centers in the city of São Paulo, according to the subjects’ version and based on their repercussions of the activity's procedures and results. Methods - The technique used to gather data was the interview, performed after the counseling moment when test result was communicated. In total, 20 interviews were carried with 14 research subjects. All interviewed were men. The criteria chosen to include a subject in the research were: greater than 18 years of age; positive for HIV; and having received the positive diagnosis for HIV at the researched CTC. In order to organize the data, the author used the technique of analysis of content by interview and by theme, elaborating analytical categories based on the study objectives. The data was interpreted using the concepts of the psychoanalytical theory of D. W. Winnicott. Results - Based on the subjects’ reports, it is considered that professionals follow the protocol for counseling, reaching its objectives, which are: a) dealing with feelings caused by the diagnosis; b) providing the opportunity to the subjects to express their suffering and anxiety; c) surpassing difficulties sharing the diagnosis with their family and partners; and d) clarifying questions about STD/HIV prevention and therapy. In the investigated counseling the interactions were characterized by the support and assistance for most of the subjects, acting as a shared reality and providing support to their feelings and concerns. However, some subjects felt the need for more time to discuss their feelings and personal issues, besides the ones related to their new HIV carrier condition. Conclusions - In the subjects’ version, the counselors welcome them, provide information and support for their needs. The study revealed the psychological processes occurred during the post-test counseling between the subject and the counselor. Listening to the subject is the primary condition to establish a sharing environment. The study provides data to improve the service currently available to the population.