Experiences of stigma and discrimination among people living with dementia and family carers in Brazil: Qualitative study.

This study aimed to understand stigma in relation to people living with dementia in Sao Paulo, Brazil. Critical Narrative Inquiry methodology was used. Semi-structured interviews were conducted between January and March 2020 with six people living with dementia and 15 family carers. Inductive and deductive techniques were used. The latter was informed by Link and Phelan's (2001) sociological theory of stigma. Dementia was commonly viewed by people living with dementia as part of ageing and carers reported low levels awareness about the condition. To avoid negative reactions from people, people living with dementia managed the negative views of dementia by minimising and normalising the condition, by expressing their ability to live an active life, and by emphasising the positive impacts of dementia in their lives. Fear of negative reactions appeared to lead to a selective disclosure of their diagnosis. Among carers, stigmatising attitudes coincided with a strong willingness to provide good care, to protect the person cared for, as well as to understand and validate their caring experiences, rather than to cause harm. In doing so, however, carers ended up depersonalising and infantilising people living with dementia, underestimating their capacities, demanding 'obedience', and restricting their freedom. There is a need to increase awareness about dementia and to provide support and training on person-centred care for carers in Brazil.

Estigma de cortesia e condições de saúde: revisão sistemática de literatura / Estigma de cortesía y condiciones de salud: revisión sistemática de la literatura / Courtesy stigma and health conditions: systematic literature review

RESUMO A literatura científica aponta consistentemente que grupos historicamente alvos de estigma social experimentam efeitos deletérios, em diversas esferas da vida. A despeito da sua gravidade e pervasividade, ainda existem lacunas na investigação do tema, tais como aquela voltada para o Estigma de Cortesia, que é vivenciado por pessoas que possuem vínculos afetivos ou profissionais com o indivíduo estigmatizado. O presente artigo teve como objetivo apresentar o estado da arte sobre estigma de cortesia, por meio de uma revisão sistemática de estudos empíricos originais publicados em periódicos revisados por pares e indexados nas principais bases relacionadas ao campo de investigação (PsycNET (APA), Pubmed, Bvs Brasil, Periódicos CAPES, SciELO e Pepsic). Como palavras-chave, para a busca dos resumos, utilizou-se: estigma de cortesia, estigma de afiliação e estigma de associação. Ao todo, 94 textos completos atenderam aos critérios de inclusão e exclusão. Os estudos apontaram que o estigma de cortesia tem sido investigado predominantemente entre familiares de pessoas que possuem algum tipo de problema relacionado com sua saúde mental, além de pais de crianças com algum tipo de deficiência.

RESUMEN La literatura científica señala constantemente que los grupos históricamente afectados por el estigma social experimentan efectos nocivos en diferentes ámbitos de la vida. A pesar de su gravedad y omnipresencia, todavía hay vacíos en la investigación del tema, como el centrado en el estigma de cortesía, que experimentan las personas que tienen vínculos afectivos o profesionales con el individuo estigmatizado. Este artículo tuvo como objetivo presentar el estado del arte sobre el estigma de cortesía a través de una revisión sistemática de estudios empíricos originales publicados en revistas revisadas por pares e indexados en las principales bases de datos relacionadas con el campo de investigación (PsycNET (APA), Pubmed, Bvs Brasil, CAPES, SciELO y revistas Pepsic). Como palabras clave para la búsqueda de resúmenes, utilizamos: estigma de cortesía, estigma de afiliación y estigma de asociación. En total, 94 textos completos cumplieron con los criterios de inclusión y exclusión. Los estudios han demostrado que el estigma de cortesía se ha investigado principalmente entre miembros de la familia de personas que tienen algún tipo de problema relacionado con su salud mental, además de los padres de niños con algún tipo de discapacidad.

ABSTRACT The scientific literature consistently points out that groups historically targeted by social stigma experience deleterious effects in different spheres of life. Despite its gravity and pervasiveness, there are still gaps in the investigation of the topic, such as that focused on the Courtesy Stigma, which is experienced by people who have affective or professional ties with the stigmatized individual. This article aimed to present the state of the art on Courtesy Stigma through a systematic review of original empirical studies published in peer-reviewed journals and indexed in the main databases related to the research field (PsycNET (APA), Pubmed, Bvs Brasil, CAPES, SciELO, and Pepsic journals). As keywords for the search for abstracts, we used: courtesy stigma, affiliate stigma and associative stigma. Altogether, 94 complete texts met the inclusion and exclusion criteria. Studies have shown that the Courtesy Stigma has been investigated predominantly among family members of people who have some type of problem related to their mental health, in addition to parents of children with some type of disability.