Assistência ou Advocacy: O papel do associativismo na garantia de direitos da pessoa com câncer no Brasil e em Portugal

• Ano de defesa: 2021
• Autor(a) principal: Vidal, Thaís Jerônimo
• Outros Autores: [e-mail]
• Orientador(a): Asensi, Felipe Dutra, Serapioni, Mauro
• Banca de defesa: Pinheiro, Roseni, Santos, Ronaldo Teodoro dos, Noronha, Susana de, Kovaleski, Douglas
• Tipo de documento: Tese
• Tipo de acesso: Acesso aberto
• Idioma: por
• Instituição de defesa: Universidade do Estado do Rio de Janeiro
• Programa de Pós-Graduação: Programa de Pós-Graduação em Saúde Coletiva
• Departamento: Centro Biomédico::Instituto de Medicina Social
• País: Brasil
• Palavras-chave em Português: Advocacia em saúde; Oncologia; Sociedade civil; Direito à saúde; Brasil; Portugal
• Palavras-chave em Inglês: Health Advocacy; Medical Oncology; Civil Society; Right to Health; Brazil
• Área do conhecimento CNPq: CIENCIAS DA SAUDE::SAUDE COLETIVA
• Link de acesso: http://www.bdtd.uerj.br/handle/1/17549

Cancer, which is now the world's second leading cause of death, is a global public health issue. In addition to the epidemiological characteristics, the disease is concerned by the social impact associated with it. In an attempt to mitigate this impact, States establish a series of public policies and rights. In this context, Cancer Patients' Associations present themselves as a possibility for social articulation and advocacy. This work, based on the analysis of documents, conducting interviews and the premise that the right to health is a fundamental human right, sought to investigate the strategies of action of two associations that operate within the scope of Oncology, one in Brazil and one in Portugal, proposing a reflection on how to which these spaces can be seen as a mechanism for the fight for the right to health. Data were collected in the period from 2019 to 2021. It was possible to describe the profile of these associations, based on three dimensions (structural, functional and legal-constitutive) and to discuss the perceptions and attitudes of the central actors of these associations with respect to claiming rights. From the study of perceptions, it was identified the concept of health underlying the interviewed users and the role that the different actors attribute to the State and to Associations. An analysis of the activities carried out made it possible to identify how health education, mutual aid, advocacy and assistance actions can favor the guarantee of rights. Throughout the work, some challenges and success factors for associativism in health were identified. Associations of people with cancer can take on relevant roles in guaranteeing rights in oncology. However, this work identified that attitudes are still built on the discourse of a biomedical model of care that puts the user's role in the background. To move towards participatory democracy, it is necessary to reduce inequalities and increase social participation within these spaces