Caracterização dos grupos de apoio e associações de pacientes portadores de doença reumatológica no Brasil

Abstract

Objective: To analyze organizational characteristics of support groups that represent rheumatic patients in the Brazilian states. Methods: Initially a mapping of the desired universe was made. Contact was attempted with all organizations and they were asked to answer a structuralized electronic questionnaire with the purpose of understanding the profile of these organizations (developed initiatives, legal aspects, difficulties, strong points, among others). Results: 45 organizations were identified. They predominate in the south and southeastern regions of the country. Of the total, 30% have a website and 50% presented difficulties to establish contact with. Of the 12 organizations that answered to the questionnaire, 5 had closed, one is on a construction phase, and the remaining was not possible to establish contact with, or did not answer the research. Of the organizations that answered the questionnaire, only one declared having an OSCIP title (Civil Social Organization of Public Interest) or a Social Organization title and only one declared being registered at the National Council of Social Assistance (CNAS). Moreover, 50% did not present a public utility title, 25% were registered in a registry office and only 1/3 declared being registered in the City Council of Social Assistance (CMAS). Conclusions: The studied groups present heterogeneous characteristics. Of the organizations studied, some showed to be more solid and well-structured, but others showed important intrinsic difficulties, with an incipient profile or characteristics that demonstrate little survival expectation.

Qualidade do cuidado e segurança do paciente: o papel dos pacientes e familiares

“…Os grupos de apoio e ativismo são organizados por pacientes, familiares ou outros representantes ao redor de uma doença ou condição de saúde específica, como síndrome de imunodeficiência adquirida, câncer, dor crônica, entre outras. Esses grupos têm o papel de divulgar informações, auxiliar na resolução de problemas e ajuda mútua, além de advogar pelos direitos dos pacientes e por mudanças sociais 16,19 . Os grupos podem ser formados dentro das organizações de saúde ou fora delas, a partir da sociedade civil organizada e nas redes sociais.…”