O cuidado integral à saúde de pessoas com síndrome de Down: uma análise no contexto da educação especial e da atenção primária à saúde

• Autor(a) principal: Silva, Rosane Seeger da
• Data de Publicação: 2020
• Tipo de documento: Tese
• Idioma: por
• Título da fonte: Manancial - Repositório Digital da UFSM
• dARK ID: ark:/26339/00130000097zj
• Texto Completo: http://repositorio.ufsm.br/handle/1/21161
• topic: Saúde; Educação; Cuidado integral; Síndrome de Down; Educação especial; Atenção primária à saúde; Health; Education; Comprehensive care; Down’s syndrome; Special education; Primary health care; CNPQ::CIENCIAS DA SAUDE::FONOAUDIOLOGIA

People with Down Syndrome (DS) are living longer than expected, in view of technological advances, especially in the area of Health. However, this population is still considered vulnerable in its aging process. Reflecting on the relevance of comprehensive health care for people with DS from adolescence and seeking to provide subsidies for a broader care for these people, this study analyzed the perception of workers from Special Education Schools (EE) and Primary Care to Health (PHC), in the municipality of Santa Maria / RS, on the conceptualization, conditions and health needs of people with DS, as well as the educational and health care provided to such people. This is a documentary, exploratory and descriptive study, with a qualitative and quantitative approach, carried out with the registration forms of people with DS from adolescence and with workers from the public and philanthropic networks of Education and Health in the municipality, especially EE schools specializing in intellectual disabilities and PHC. For data collection, two techniques were employed: i) documentary research (active search in the registration forms of people with DS, prepared by workers in the mentioned areas, using an instrument previously prepared by the researchers inspired by the Rapid Multidimensional Assessment of the Elderly Person - AMRPI) and ii) application of a questionnaire to workers (part aimed at identifying workers - sex, age, level, degree and time of training, as well as time in institutional practice and another relevant to the concepts and practices with people with DS). Initially, the researcher contacted the heads of the institutions to gain access to the registration forms and schedule meetings with the workers. The meetings were held in the institutions themselves (in a reserved place), according to previous scheduling and availability of workers, lasting 15 to 20 minutes. Data collection took place from September 2018 to July 2019. The interviews were audio recorded and transcribed in full. The data subject to quantitative analysis were organized, tabulated and, afterwards, a descriptive analysis was performed. The qualitative data were treated according to the Collective Subject Discourse (CSD) technique, which consists of elaborating the collective discourse from individual discourses. The active search in the registration forms resulted in 70 people with DS (attended at EE schools and PHC) and the number of workers was 88, 31 from EE schools and 57 from PHC schools. Article 1 “SD: conceptions of workers from EE and APS” investigated the conceptions of workers from schools of EE and APS about the syndrome and people with DS. Article 2 “Living conditions and health needs of people with DS: a study from the institutions of Health and Education” analyzed the perception of workers about the living conditions and health needs of people with DS. The article 3 "Aging of people with DS: conception and performance of workers from EE and APS" was concerned with analyzing the conception and performance of workers from schools of EE and APS in the face of the aging of people with DS and the article 4 “The health and aging of people with DS: what PHC workers say” analyzed the PHC workers' understanding of health and the aging condition supported by AMRPI. It is believed that this study can be replicated in different realities in order to improve longitudinal care for people with DS, readjusting the planning of educational and health actions with this portion of the population that is also aging.