Hemophilia is an important hemorrhagic disease in Brazil, affecting about 1 out of every 10,000 males. Patient's self-perception of hemophilia and interaction with the community are relevant to the clinical management of this disease. We investigated several social, psychological, and community aspects of hemophilia in a Brazilian population (Campinas, São Paulo State), interviewing 30 hemophiliac males, a control sample comprised of 73 non-hemophiliac brothers, and 641 individuals from the community. According to our results, more severe social disability in the hemophiliac patient was related to economic factors, mainly unemployment; however, no difference was found in relation to marital status, reproduction, or education. Self-perception of changes in health and lifestyle by individuals with hemophilia showed frequent self-stigmatization, along with depression, anxiety, and insecurity. The community showed a widespread lack of familiarity with hemophilia (49%), viewing people with hemophilia with the kinds of prejudices often observed in relation to people with infectious diseases, like AIDS. The paper concludes by recommending that a community-based program be implemented to improve the social adjustment status of individuals with hemophilia.

RESUMO -O objetivo do estudo foi analisar a visão que os pais têm do implante coclear, isto é, as informações que eles têm a respeito do implante, os riscos, os benefícios e suas expectativas em relação ao futuro dos filhos. Entrevistaram-se 10 pais de crianças surdas candidatas ao implante coclear no Hospital de Clínicas da Unicamp. Com base em uma abordagem qualitativa, procedeu-se à análise de conteúdo, sendo evidenciado que a maioria dos pais busca a cura da surdez por meio do implante coclear e, consequentemente, a aquisição da fala. Para essas famílias, o implante coclear é visto como uma solução para a surdez de seus filhos e como uma possibilidade deles terem um futuro melhor. Constatou-se que no processo de conhecimento do implante, os pais vivenciaram ansiedade e angústia frente às informações sobre os riscos e benefícios do procedimento e a necessidade de optarem pela realização ou não do implante coclear.Palavras-chave: pais; implante coclear; deficiência auditiva. Cochlear Implant in Children:The Parents' Point of View ABSTRACT -The objective of this study was to analyze the point of view of parents in relation to the cochlear implant, their level of information concerning the implant, its risks and benefits, and their expectations towards their children´s future. Ten parents of deaf children candidate for the cochlear implant at Unicamp´s Clinical Hospital were interviewed. Based on a qualitative approach, a content analysis showed that the majority of parents seek the cure for deafness, and consequently, the acquisition of speech with the cochlear implant. For these families, the cochlear implant is seen both as the solution to their children´s deafness and as a path for a better future. It has been evidenced that during the acquisition of knowledge about the implant, parents experienced anxiety and anguish when faced with the risks and benefits of the procedure, and the need to choose between performing and not performing the cochlear implant. O impacto causado pelo diagnóstico da surdez exige modificações e rearranjos na dinâmica familiar. Portanto, o momento em que os pais recebem o diagnóstico pode gerar diversas reações, de acordo com o modo como essas informações são passadas e compreendidas. As primeiras reações dos pais ao diagnóstico da surdez costumam ser de choque, negação, raiva, culpa e até de esperança mágica de cura (Amaral, 1995;Luterman, Kurtzer-White & Seewald, 1999;Martinez, 1998). KeywordsLuterman e cols (1999) referem que se deve tomar cuidado com o momento de transmitir a notícia do diagnóstico aos pais. É necessário passar informações precisas e levar em conta que, devido ao impacto do diagnóstico, grande parte desses pais não consegue absorver muitas informações, especialmente as mais complexas. Cabe aos profissionais fornecer informações em relação à surdez, sobre as possí-veis alternativas de tratamento, permitindo à família obter outras opiniões sobre o diagnóstico e o tratamento. É preciso conceder um tempo para que os pais possam assimilar todas as informações, capacit...

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The aim of this study was to evaluate the performance of a group of women with Turner Syndrome (TS) in interpersonal situations where several social skills were required, and to compare the results with unaffected sisters. Fifty-two TS females aged 15-35 years and 33 sisters aged 16-43 were evaluated using Del-Prette Social Skills Inventory (SSI) and individual interviews. Thirty mothers to subjects and sisters answered questionnaires. It was found that TS girls' performance in SSI was as good as their sisters' and even better in meeting new people and facing unknown situations (p = 0.020). Older TS women scored better than younger ones, differently from their sisters. There were no significant correlations between total score of TS women and their age at diagnosis, time of follow-up and height z-score. Mothers reported having more problems with TS girls than with sisters. Although TS girls demonstrated having social difficulties, just a few of them spontaneously complained about interpersonal problems in the interview. Results suggest that social difficulties may not cause TS girls major problems nor make them unhappy with their social lives, and/or TS girls may not be able to perceive their own difficulties. Good performance in SSI also suggests that TS girls can identify adequate skills in presented situations and answer in a way to obtain good scores, but they may not necessarily use their skills due to other factors like anxiety and shyness. They may also have a tendency to answer SSI in a way they consider socially desirable, masking their real difficulties.

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