saúde da família e cuidados paliativos infantis: ouvindo os familiares de crianças dependentes de tecnologia family health program and children palliative care: listening the relatives of technology dependent children

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ID: 210329
2010
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Abstract
O estudo discute um modelo de cuidados paliativos infantis baseado na Saúde da Família quando da assistência domiciliar, articulado com os demais níveis de atenção e nas demandas das famílias. Participaram do estudo dezoito membros de nove famílias de crianças do Instituto Fernandes Figueira (IFF), das quais quatro estão assistidas pelo Programa de Assistência Domiciliar Interdisciplinar (PADI), três internadas aguardando a inclusão no programa e duas internadas e já pertencentes ao PADI. O PADI foi estudado por ser o único que oferece cuidados paliativos infantis na rede pública de saúde. Os resultados demonstram-se positivos quanto ao vínculo estabelecido com a equipe; o acolhimento; o conhecimento pelos familiares acerca da doença e a dinâmica entre o PADI e o IFF. Como pontos negativos, aparecem as dificuldades, que vão desde a implantação do programa até sua continuidade e que quase todos os familiares referem agravos ou doenças. Concluiu-se que, apesar do PADI se apresentar como a forma encontrada pelo IFF para a desospitalização, os cuidados domiciliares pela Saúde da Família, bem articulados com a rede, seria o ideal por ser o nível de assistência adequado para tal.
This study discusses the creation of a new children palliative care program based on the Family Health Program, considering the level of care at home and yielding to family requests. The study focused on eighteen members of nine families of technology dependent children (TDC) who were hospital patients at Instituto Fernandes Figueira (IFF): four who are being assisted by its palliative care program Programa de Assistência Domiciliar Interdisciplinar (PADI); three who were inpatients waiting for inclusion in the Program, and finally two inpatients already included in PADI. PADI was chosen because it is the only child palliative care program in Brazil. The results are positive in regards to the connection established between the families and the health care team, the reception of the children, the explanation to the family concerning the disease, and the functional dynamics between the PADI and IFF. As negative points, difficulties arose as a result of the implementation of the program, from its continuity to the worsening or illness of the entire family. In conclusion, although the PADI is the IFF's way of discharging patients, the domiciliary cares taken by the Family Health Program, well articulated with the healthcare system, would be ideal for being the adequate assistance for such.
Reference Key
rabello2010cinciasade Use this key to autocite in the manuscript while using SciMatic Manuscript Manager or Thesis Manager
Authors ;Cláudia Azevedo Ferreira Guimarães Rabello;Paulo Henrique de Almeida Rodrigues
Journal journal of physical activity & health
Year 2010
DOI
10.1590/S1413-81232010000200013
URL
http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1413-81232010000200013
Keywords
palliative care home care family health programpublic aspects of medicine saúde da família

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