RESUMO
The need for the public to take an active role in scientific research is becoming increasingly important, particularly in health-related research. However, the coexistence and alignment of scientific and citizen interests, needs, knowledge and timing is not straightforward, especially when involving migrant populations. To conduct impactful research, it becomes also essential to consider the perspectives of policymakers, thereby adding a layer of complexity to the processes.In this article we address the experience of a living lab created in a research institution and supported by the city council and a local foundation, in which we developed three experiences of patient and public involvement (PPI): (1) accessing to comprehensive care for people at risk of Chagas disease; (2) strategies towards improving access and quality of mental healthcare services in migrants; (3) promoting healthy and safe school environments in vulnerable urban settings.These three challenges provided an opportunity to delve into diverse strategies for involving key stakeholders, including migrant populations, expert researchers and political actors in health research. This article offers insights into the successes, challenges, and valuable lessons learnt from these endeavours, providing a vision that can be beneficial for future initiatives. Each living lab experience crafted its unique governance system and agenda tailored to specific challenge scenarios, giving rise to diverse methods and study designs.We have found that the management of the cocreation of the research question and the institutional support are key to building robust PPI processes with migrant groups.
Assuntos
Migrantes , Humanos , Política de Saúde , Acessibilidade aos Serviços de Saúde , Pessoal Administrativo , Pesquisa sobre Serviços de Saúde , Participação da ComunidadeRESUMO
This paper aims to explore the contributions of research that include gender perspective in analysing the sexual experiences of women diagnosed with serious mental illness and to identify any barriers and systems that impede sexual fulfilment. We have developed a qualitative literature review using the PRISMA statement. The databases SCOPUS, WOS and PsychINFO were used in this review. Studies were included if they were published up to March 15, 2022, and only studies in English were included. An initial database search was preformed; upon screening for eligibility, there remained 16 studies that explored the sexual experiences of women with diagnoses of serious mental illness. The studies were analysed by a thematic synthesis. Data was coded line-by-line which generated descriptive themes, resulting in four synthesised findings. The four synthesised findings that derived from the reviewed studies were stigma and subjectivity, the experience of interpersonal relationships, the socialisation of women and the effects of psychiatric hegemony. A feminist perspective highlights the interrelationship between gender and stigma as it relates to serious mental illness and sexuality. A feminist perspective and an intersectional approach should be adopted at the intersubjective and structural level to account for the complexity of human experience and to subvert the heteropatriarchal system.
Assuntos
Feminismo , Transtornos Mentais , Feminino , Humanos , Relações Interpessoais , Transtornos Mentais/epidemiologia , Pesquisa Qualitativa , SexualidadeRESUMO
Resumen Objetivos: identificar a partir de relatos individuales y familiares los componentes del estigma social asociado a un diagnóstico de Chagas positivo. Métodos: el estudio recopila los testimonios de tres familias a través de entrevistas a profundidad que fueron grabadas, cuyo contenido fue estructurado y luego compartido entre los investigadores a través de un proceso de triangulación. Resultados: se identificaron las diferentes formas de estigma social, experimentado, percibido, anticipado, así como el autoestigma, el estigma por asociación y comportamientos de discriminación; lo que conlleva el aislamiento social, refuerza los miedos tradicionalmente relacionados a esta enfermedad, y provoca tensiones intrafamiliares. El estigma social y el silencio que lo acompaña son serias barreras de acceso a la consulta médica y al tratamiento antiparasitario. Conclusiones: Es importante tomar en cuenta aspectos de tipo psico-socio-cultural en las estrategias de atención integral de Chagas, principalmente en los programas de información, educación, comunicación (IEC) y durante la consulta médica. Para romper el estigma y el silencio que lo acompaña, es indispensable integrar las personas afectadas por Chagas y otros actores de la sociedad civil en el diseño de esas estrategias.
Abstract Objectives: to identify the components of social stigma associated with a positive diagnosis of Chagas disease based on individual and family accounts. Methods: The study compiles the testimonies of 3 families through in-depth interviews that were recorded, the content of which was structured and then shared among the researchers through a process of triangulation. Results: different forms of social stigma, experienced, perceived, anticipated, as well as self-stigma, stigma by association and discriminatory behaviours were identified, leading to social isolation, reinforcing traditional fears associated with the disease, and causing intra-familial tensions. Social stigma and the silence that accompanies it are serious barriers to access to medical consultation and deworming treatment. Conclusions: It is important to take into account psycho-socio-cultural aspects in strategies for comprehensive care of Chagas disease, especially in information, education and communication (IEC) programmes and during the medical consultation. Also, to break the stigma and the silence surrounding it, it's essential to integrate people affected by Chagas and other civil society actors into the conception of these programs.