Enfermagem e famílias de crianças com síndrome nefrótica: novos elementos e horizontes para o cuidado

Abstract

RESUMO:A condição crônica tem sido um tema de relevância para a reflexão do processo de viver humano. O artigo apresenta a síntese de uma pesquisa cujo objetivo foi compreender o cuidado às crianças com Síndrome Nefrótica, identificando novos elementos contextuais e horizontes para reconstruir o cuidado de enfermagem, tendo como foco a família. Trata-se de um estudo qualitativo apoiado na hermenêutica, fundamentada em Gadamer e Ricouer, realizado em 2004, com famílias de crianças do Ambulatório de Nefrologia Pediátrica do Hospital Universitário Júlio Müller, em Cuiabá, totalizando 42 pessoas. Na discussão são apresentados: síntese das famílias, na qual elas são mostradas por meio das suas biografias, projetos, personagens e contexto; a trajetória da doença da criança na família e o cuidado da criança com Síndrome Nefrótica, no qual revelam-se os horizontes dos cuidadores, familiares e profissionais de saúde, e o cuidado possível a partir dos arranjos da família e limites da equipe. Conclui-se que o diálogo é a primeira condição para a compreensão e para o cuidado.ABSTRACT: Chronic conditions have been extremely relevant issues to consider when reflecting about the human living process. The purpose of this study was to understand how to care for children with Nephrotic Syndrome in nursing practice, focusing on the family. The families' narratives were interpreted in this qualitative study based on the hermeneutic approach of Gadamer and Ricouer. The participants of this study were the families of children and adolescents with Nephrotic Syndrome who in 2004 attended the Pediatric Nephrology Service at the Júlio Müller University Hospital, in Cuiabá, Brazil. The discussions were grouped into three categories: Synthesis of the families, presented by means of their biographies, projects, personalities, and contexts; The trajectory of the child's condition in the family; and the Care for the nephrotic child. These aspects reveal the points of view of the caregivers, family members and health professionals, as well as the care possibilities in view of the family arrangements and team limitations. Our conclusion is that dialogue is the first condition to understanding and to offering care. RESUMEN:La condición crónica ha sido un tema de importancia extrema para la reflexión del proceso de vivir humano. En el artículo se presenta la síntesis de una investigación realizada con la finalidad de comprender cómo los niños con Síndrome Nefrótico son cuidados, buscando identificar nuevos elementos y horizontes para reconstruir el cuidado de enfermería, teniendo como foco la familia. Para la presente investigación, se realizó un estudio cualitativo que utilizó como referente teórico metodológico, la hermenéutica basada en Gadamer y Ricouer. De la investigación realizada en 2004, participaron 42 personas pertenecientes a las familias de niños y adolescentes con Síndrome Nefrótico, usuarias del Servicio de Nefrología Pediátrica del Hospital Universitario Júlio Müller, en Cuiabá, Brasil. En la discusión son presentadas: una síntesis...

Genogram and ecomap: brazilian nursing contributions

“…25 "Individually", these instruments were used: with mental health service users; 15 with mothers of premature children; 6,21 mothers of pre-adolescents; 17 patients with traumatic spinal cord injury; 18 children in early childhood; 26 children with nephrotic syndrome; 30 stoma patients; 22 elderly people [33][34] and young victims of violence. 35 With regard to its construction, in seven papers, the genogram and ecomap were elaborated based on an individual interview; 6,[17][18]21,23,33,35 in 17 during group meetings; [2][3][8][9][10][11][12][13][14][15][16][19][20][28][29]32,34 and, in three, 22,24,30 both individual and group interviews were used. In seven papers, 7,25-27,31,36-37 the authors did not mention how the instruments were constructed.…”

“…2,11,16,22,25,30 In four papers, the place where the interviews were held was not mentioned. 7,14,31,37 As regards the meetings with the families, in nine papers, 2,6,[9][10][11]20,28,32,36 it was mentioned that the data collection resulted from different meetings with the family; in one paper, a single meeting was sufficient to collect the data; 12 in two, it was reported that, first, a relation had to be established with the family; 19,22 in four, the construction of these instruments started during the initial contact with the family members.…”

“…The techniques used in the construction of the genogram and ecomap were mentioned in 22 papers, [2][3]6,[8][9][12][13][14][15][16][20][21][22][24][25][29][30][32][33][34][35][36] as follows: participation of the family members, use of materials, such as markers and color codes by the children, and the moments when the instruments were elaborated (first or second meeting) were described in some papers. In 12 papers, the construction process was not referred to.…”

“…Ribeiro, Rocha (2007) 30 Nursing -understand how children with nephrotic syndrome are being cared for, identify new contextual elements and horizons to reconstruct Nursing care, within a family focus.…”

Cotidiano da família no enfrentamento da condição crônica na infância

“…As dificuldades financeiras preocupam as famílias que precisam se reorganizar para o tratamento do filho doente. A doença crônica, aliada às "dificuldades impostas pela situação de pobreza" (11) , por exemplo, pode comprometer o tratamento da criança.…”