Psychosis is the most ineffable experience of mental disorder. We provide here the first co‐written bottom‐up review of the lived experience of psychosis, whereby experts by experience primarily selected the subjective themes, that were subsequently enriched by phenomenologically‐informed perspectives. First‐person accounts within and outside the medical field were screened and discussed in collaborative workshops involving numerous individuals with lived experience of psychosis as well as family members and carers, representing a global network of organizations. The material was complemented by semantic analyses and shared across all collaborators in a cloud‐based system. The early phases of psychosis (i.e., premorbid and prodromal stages) were found to be characterized by core existential themes including loss of common sense, perplexity and lack of immersion in the world with compromised vital contact with reality, heightened salience and a feeling that something important is about to happen, perturbation of the sense of self, and need to hide the tumultuous inner experiences. The first episode stage was found to be denoted by some transitory relief associated with the onset of delusions, intense self‐referentiality and permeated self‐world boundaries, tumultuous internal noise, and dissolution of the sense of self with social withdrawal. Core lived experiences of the later stages (i.e., relapsing and chronic) involved grieving personal losses, feeling split, and struggling to accept the constant inner chaos, the new self, the diagnosis and an uncertain future. The experience of receiving psychiatric treatments, such as inpatient and outpatient care, social interventions, psychological treatments and medications, included both positive and negative aspects, and was determined by the hope of achieving recovery, understood as an enduring journey of reconstructing the sense of personhood and re‐establishing the lost bonds with others towards meaningful goals. These findings can inform clinical practice, research and education. Psychosis is one of the most painful and upsetting existential experiences, so dizzyingly alien to our usual patterns of life and so unspeakably enigmatic and human.

Trans women living with HIV (TWH) have suboptimal HIV care engagement. We pilot tested Trans Amigas, a theory-based, trans-specific peer navigation (PN) intervention to address barriers to care in São Paulo, Brazil. TWH were randomized to the PN intervention (n = 75) or control (n = 38) condition. Control participants were referred to trans-friendly HIV care. Intervention participants were assigned a navigator who conducted nine in-person one-on-one sessions and bi-weekly phone or text check-ins to help participants overcome barriers to care and work towards gender affirmation and healthcare goals. We followed participants for 9 months to determine intervention feasibility, acceptability, and preliminary efficacy in improving retention in care. Analyses were intention to treat (ITT). Intervention acceptability was high: at end line, 85.2% of PN participants said they would continue receiving services and 94.4% would recommend peer navigation to a friend. A priori feasibility criteria were met: 92% of eligible participants enrolled and 70% were retained at 9 months; however, only 47% achieved moderate or better adherence to both in-person and phone/text program components. Though the pilot was not powered for efficacy, ITT findings trended toward significance, with intervention participants 40% more likely to be retained in care at the end of the study. Population-specific peer programming to support care engagement is acceptable, feasible, and can improve HIV outcomes for Trans women living with HIV.

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Background: Transgender (trans) women are disproportionately affected by both HIV and gender-based violence (GBV), defined as physical, sexual, or emotional violence perpetrated against an individual based on their gender identity/expression. While a growing body of evidence demonstrates that GBV leads to poor HIV care and treatment outcomes among cisgender women, less research has examined this association among trans women. We assessed the impact of lifetime experiences of GBV on subsequent retention in HIV care and laboratory confirmed viral suppression among a sample of trans women living with HIV (TWH) in Brazil. Methods: A pilot trial of a peer navigation intervention to improve HIV care and treatment among TWH was conducted in São Paulo, Brazil between 2018 and 2019. TWH were recruited and randomized into the intervention or control arm and participated in a baseline and 9-month follow-up survey and ongoing extraction of clinical visit, prescribing, and laboratory data. Generalized linear model regressions with a Poisson distribution estimated the relative risk (RR) for the association of lifetime physical and sexual violence reported at baseline with treatment outcomes at follow-up, adjusting for baseline sociodemographic characteristics. Results: A total of 113 TWH participated in the study. At baseline, the median age was 30 years, and the prevalence of lifetime physical and sexual violence was 62% and 45%, respectively. At follow-up, 58% were retained in care and 35% had evidence of viral suppression. In adjusted models, lifetime physical violence was non-significantly associated with a 12% reduction in retention in care (RR: 0.88, 95% CI: 0.65, 1.19) and a 34% reduction in viral suppression (RR: 0.66; 95% CI: 0.40, 1.09). Lifetime sexual violence was significantly associated with a 28% reduction in retention in HIV care (RR: 0.72, 95% CI: 0.52, 0.99) and a 57% reduction in viral suppression (RR: 0.43; 95% CI: 0.23, 0.79). Conclusion: Our findings are among the first to demonstrate that lifetime experiences of sexual violence are associated with subsequent reduced likelihood of retention in HIV care and viral suppression among trans women. Interventions seeking to improve HIV treatment outcomes should assess and address experiences of GBV among this population. Trial registration: ClinicalTrials.gov Identifier: NCT03525340

Travestis and transgender women (TrTGW) constitute the groups with the highest HIV prevalence in the world, with higher probability of infection compared with the general population and lower adherence to prevention and treatment strategies than other vulnerable groups. Considering these challenges, this study describes the factors associated with the retention of TrTGW with HIV to the TransAmigas project. Participants were recruited from April 2018 to September 2019 in a public health service in São Paulo, Brazil. A total of 113 TrTGW were randomly assigned to either a peer navigation intervention (75) or a control group (38) and followed up for nine months. To analyze the association between the selected variables and the outcome (“retention at nine months”, regardless of contact at three months, defined by the “full completion of the final questionnaire”), bivariate and multivariate logistic regression models were used. Peer contact forms were qualitatively assessed to validate and complement the previous selection of quantitative component variables. Of the 113 participants, 79 (69.9%) participated in the interview after nine months, of which 54 (72%) were from the intervention group and 25 (66%) from the control group. In the final multivariate model, contact at three months (adjusted odds ratio - aOR = 6.15; 95% confidence interval - 95%CI: 2.16-17.51) and higher schooling level (≥ 12 years) (aOR = 3.26; 95%CI: 1.02-10.42) remained associated with the outcome, adjusted by race/skin color, age ≤ 35 years, and HIV serostatus disclosure. Future studies with TrTGW should include contact at regular intervals, with additional efforts aimed at participants with lower schooling level.

Travestis e mulheres trans (TrMT) pertencem aos grupos com mais alta prevalência do HIV no mundo, com maior probabilidade de infecção em relação à população geral e menor adesão a estratégias de prevenção e tratamento do que outros grupos vulneráveis. Considerando esses desafios, descrevemos os fatores associados à retenção de TrMT com HIV no projeto TransAmigas. O recrutamento ocorreu entre abril de 2018 e setembro de 2019, em um serviço público de saúde em São Paulo, Brasil. Foram inscritas 113 TrMT, atribuídas aleatoriamente para uma intervenção com navegadora de pares (75) ou um grupo controle (38) e seguidas durante nove meses. Para analisar a associação entre as variáveis selecionadas e o desfecho (“retenção aos nove meses” independentemente do contato aos três meses, definido pela “resposta completa ao questionário final”), foram empregados modelos de regressão logística bi e multivariados. Uma exploração qualitativa dos formulários de contato de pares foi realizada para validar e complementar a seleção prévia de variáveis do componente quantitativo. Das 113 participantes, 79 (69,9%) responderam à entrevista de nove meses, sendo 54 (72%) do grupo intervenção e 25 (66%) do grupo controle. No modelo multivariado final, o contato aos três meses (odds ratio ajustado - ORa = 6,15; intervalo de 95% de confiança - 95%CI: 2,16-17,51) e a maior escolaridade (≥ 12 anos) (ORa = 3,26; IC95%: 1,02-10,42) permaneceram associados ao desfecho, ajustados por raça/cor, idade < 35 anos e revelação do status sorológico para HIV. Pesquisas futuras com TrMT devem incluir contato em intervalos regulares, com esforços adicionais voltados a participantes com menor escolaridade.

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