Background For ICD-11, the WHO emphasized the clinical utility of communication and the need to involve service users and carers in the revision process. Aims The objective was to assess whether medical vocabulary was accessible, which kinds of feelings it activated, whether and how users and carers would like to rephrase terms, and whether they used diagnosis to talk about mental health experiences. Method An innovative protocol focused on two diagnoses (depressive episode and schizophrenia) was implemented in 15 different countries. The same issues were discussed with users and carers: understanding, feelings, rephrasing, and communication.
Transgender and gender diverse (TGD) individuals’ depsychopathologization in the eleventh revision of the International Classification of Diseases (ICD-11) faces systemic discriminations built-in epistemic pipelines. Based on an analysis of unexploited data from ICD-11 and the French translation process, this article addresses power issues in participatory research and systemic discrimination within a socio-cultural context. We used a peer-driven participatory approach to conduct qualitative analyses of the French version of the ICD based on contributions from 72 TGD participants in the French study for ICD-11. The results highlight a major incongruence between participants’ propositions and the final official translation. Alternative terms were proposed and discussed by participants in regard to usage and concepts, but also encompassed participation and perceived futility of maintaining pathologization. We found discrepancies in the French publication and translation processes, respectively on gender categorization and back translation. These results question the relevance and implementation of ICD-11 for TGD communities and highlight failures at all three stages of the official French translation. Power issues have an impact on knowledge production and, while mechanisms vary, all relate to epistemic injustice. Involving TGD communities in all stages of medical knowledge production processes would reduce transphobic biases. Individuals with personal stakes involved in politicized research areas appear all the more necessary today.
Depsychopathologization of transgender and gender diverse (TGD) individuals in the eleventh revision of the International Classification of Diseases (ICD-11) called for a shift in care delivery models, based on free and informed consent. Public health policies face epistemic and discriminatory challenges and consensus built on evidence-based data is needed. TGD communities were consulted but did not actively participate in ICD-11 and the following public health debates. There is a need for TGD perspective—both in research and practice. This study draws on a peer-led participatory approach and explores TGD participants’ recommendations based on unexploited French data from ICD-11, in which 72 TGD gave feedback on public policies. Lexicometric analyses were conducted using the ALCESTE method and resulted in a two-step double Descending Hierarchical Classification. Sex, gender, and health consumption were analyzed as secondary variables. The first classification highlighted five main topics: care pathways, training of professionals, access, literacy, and civil status change, developed into 12 targets in the second classification. While sex and gender appeared to have little impact on discourses, recommendations varied according to received care. This study supports the growing scientific consensus of a public health approach to face TGD health challenges and emphasizes TGD individuals’ expertise.
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