Rare disease associations in Portugal: an importante source of psychosocial support

• Autor(a) principal: Costa, Catarina
• Data de Publicação: 2022
• Outros Autores: Alonso, Isabel, Sequeiros, Jorge, Paneque, Milena
• Tipo de documento: Artigo
• Idioma: por
• Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
• Texto Completo: https://revista.appsicologia.org/index.php/rpsicologia/article/view/1803
• topic: patients’ associations; rare diseases; advocacy; Portugal; associações de doentes; doenças raras; novas estratégias; Portugal

This study aimed to characterize the development of Portuguese patient associations, mostly on rare diseases, as a relevant source of psychosocial support for patients and their families. Participants represented 23 patients’ associations or delegations, with which interviews were carried out. Recordings were transcribed and analyzed using the thematic analysis method. Three conceptual categories emerged in the discourse: (1) mission of the associations; (2) current context of associative work in our country; and (3) strategies and opportunities for patient associations in Portugal. The most common limitations were: its voluntary character, low literacy and poor involvement of the population and professionals and lack of funding. Results showed that associations play a key role in patient advocacy and that it is possible to reinforce their work of articulation with existing resources, facilitating the necessary integration in healthcare services and maximizing their visibility.