Conhecimento e acesso às tecnologias de cuidado à saúde para as pessoas com Doença Falciforme.

Abstract

In this study, the proposal was brought to expand the understanding of the profile of people with sickle cell disease and knowledge about new health care technologies. Guided by the objectives of: understanding the knowledge of people with PD about health technologies; characterize the modes of access to new health technologies; analyze the extent to which social networks contribute to people with PD about new health care technologies. This is a cross-sectional descriptive study that included the participation of 70 people diagnosed with sickle cell disease, from January to June 2021, in a reference center in Feira de Santana — Bahia, 61.3% of them women and 38.7% men, hemoglobinopathy with a higher prevalence of HBSC 48.6%, all participants answered a semi-structured questionnaire developed by the author. Among the results it was possible to verify that 51.4% obtained the diagnosis through the heel prick test, only 24.3% use Hydroxyurea. Although the high rates of pain reporting 78.6%, only 38.6% use the physiotherapy service as a therapeutic resource to relieve pain, limitations and dysfunctions. Six people were diagnosed with osteonecrosis, 2 people received guidance for referral at the Cell Therapy Center of Hospital das Clínicas, a reference point in the treatment of stem cells in osteonecrosis, however none underwent any treatment at the unit, 95.7% (67) never heard of this new technology. With the popularization of Smartphones, 90% said they have access to the 'internet' through the device. About 55.7% participate in social networks that discuss the disease, on the other hand, 52.9% said that social networks did not contribute to a greater understanding of the DF and only 14.3% said they had known of any new technology for health care through networks. It was possible to conclude that Individuals with Sickle Cell Disease, although connected, do not have the proper knowledge about new health care technologies and are not properly oriented about the possibilities of technological innovations for the treatment of sickle cell disease. Thus, the creators of technologies should seek to shorten this distance, so that the therapy reaches the demanding population, thus promoting the improvement of the clinical condition and quality of life of people with sickle cell disease.