O SABER DOS PACIENTES DO GRUPO “EU LUTO PELA IMUNO BRASIL”1 SOBRE CLASSE HOSPITALAR

Abstract

The National Association of Patients with Rare Diseases “I fight for Imuno Brasil” where members recognize themselves as “Imunos”, is recognized for the fight for the human rights of patients with immunodeficiencies throughout Brazil. In this research, our objective was to identify the knowledge of members of this group about Hospital Education in the Hospital Class modality. Immunos are chronic patients, who often have repetitions of symptomatological conditions that lead to hospitalization, either due to the characteristics of the disease, sequelae or lack of treatment. To do the research, we used the qualitative methodology. We developed an electronic questionnaire, whose link was made available in the “Imunos” WhatsApp group and was available for three weeks and every seven days on average, a reminder message was sent. 25 members of the whatsapp group participated in the research. All participants had access to the Free and Informed Consent Form at the beginning of the form and only continued with the answers if they agreed to participate in the research freely and deliberately, knowing that they could withdraw at any time. The form had two paths: one for participants who had already become aware of the term “Hospital Education” (Group 1) and another for those who had never become aware of it (Group 2). The answers were analyzed by Content Analysis. We found two categories of participants that were described from Groups 1 and 2. Our analyzes showed that most research participants do not know the term, the right or the Hospital Education modality. The few members who know about Hospital Education, understand it as an inclusive educational proposal, necessary for access by all patients who need it; but also that it needs revision so that it can achieve the objectives of its creation and establishment in Brazil.