RESUMO
BACKGROUND: In the last 15 years, the care provided for individuals born with differences of sex development (DSD) has evolved, with a strong emphasis on interdisciplinary approaches. However, these developments have not convinced some stakeholders to embrace the current model of care. This care model has also paid insufficient attention to socio-cultural differences and global inequalities. SUMMARY: This article is an opinion statement, resulting from in-depth discussions and reflection among clinicians, patients, and family support organizations based in the US and Europe, where we seek areas of common ground and try to identify opportunities to further develop resources. The product of these conversations is summarized in 10 panels. The corresponding sections provide additional discussion on some of the panel items. KEY MESSAGES: Participants identified areas of agreement and gained a deeper understanding of the reasons behind disagreements on certain matters and identified the necessary steps to foster future consensus. We offer preliminary recommendations for guiding clinical management and resource allocation. By promoting a broader consensus, we aim to enhance the quality of care and well-being for individuals of all ages who have a DSD.
RESUMO
INTRODUÇÃO: A investigação sistemática e detalhada dos comportamentos sexuais de risco constitui um dos principais alicerces para o desenvolvimento de pesquisas que visam à criação de intervenções eficazes para a prevenção do HIV. OBJETIVO: Descrever e discutir as etapas do processo de adaptação lingüístico-cultural das versões masculina e feminina da Escala de Avaliação de Comportamento Sexual de Risco para pacientes psiquiátricos para o português brasileiro pelo Projeto Interdisciplinar em Sexualidade, Saúde Mental e AIDS. MÉTODOS: Treinamento dos investigadores brasileiros no instrumento original, comparação da tradução e da retrotradução, seguida de adaptação lingüístico-cultural à luz da fase formativa do projeto, resultando em uma versão utilizada no treinamento dos entrevistadores brasileiros em entrevistas com pacientes psiquiátricos. Verificação lingüística, confiabilidade qualitativa do instrumento e confiabilidade entre entrevistadores constituíram as etapas complementares para a versão final do questionário. RESULTADOS: Exclusão e adição de seções e itens da escala, tanto nos aspectos conceituais quanto estruturais, foram realizadas, bem como a incorporação de achados resultantes da fase formativa do piloto da pesquisa e mudanças lingüísticas relativas ao registro empregado.
INTRODUCTION: A systematic and detailed investigation of sexual risk behaviors is one of the main foundations in the development of research projects aimed at designing effective interventions for HIV prevention. OBJECTIVE: This paper presents and discusses the stages of the translation and cross-cultural adaptation of male and female versions of the Sexual Risk Behavior Assessment Schedule for psychiatric patients into Brazilian Portuguese, carried out by the Interdisciplinary Project in Sexuality, Mental Health and AIDS. METHODS: Training of Brazilian investigators in the original questionnaire, comparison between translation and back-translation, followed by linguistic and cultural adaptation in the light of the project formative phase were performed, resulting in a version used to train Brazilian interviewers in interviewing psychiatric patients. Language verification, qualitative reliability and interrater reliability were used to complement the final version of the instrument. RESULTS: Elimination and addition of instrument sections and items covering both conceptual and structural aspects were carried out. Incorporation of formative findings from the pilot study and linguistic changes in terms of register were also performed.