Cuidado familial das crianças com necessidades especiais de saúde: um processo (sobre)natural e de (super)proteção

Abstract

Pesquisa descritiva e exploratória que objetivou descrever o processo de cuidado desenvolvido pelos familiares/cuidadores das crianças com necessidades especiais de saúde. Os sujeitos foram 10 familiares/cuidadores de criança em uma unidade pediátrica. A produção de dados ocorreu por meio do método criativo e sensível mediado pelas dinâmicas de criatividade e sensibilidade e submetidos à análise de discurso. Os resultados apontaram um cuidado (sobre)natural e de (super)proteção, atrelado à privação da criança às atividades comuns do dia a dia, a fim de protegê-la dos agravos à saúde. Constatou-se a abnegação pessoal do familiar em prol do cuidado requerido pela criança e a presença do pai como cuidador principal. Recomenda-se o desenvolvimento de atividades de extensão específicas para esses familiares, a criação de programas voltados para assistência domiciliar da criança e atividades que beneficiem o aprimoramento da prática de cuidar no domicilio.

Stomized children care practices: narratives of relatives

“…Knowledge about anatomophysiological aspects of clinical and surgical treatment is not sufficient to support a more effective proposal for comprehensive care. Other factors that affect the affective relationship between child and his relatives, relative and social discrimination of the child, and difficulty of accepting and caring for the disabled child should be known (1,(15)(16)18) As ostomy is carried out, family and children go through a long adaptive process. Relative support is therefore an important mechanism in the face of the difficulties faced in daily life.…”

“…This Ordinance values ostomy care, but still requires vigilance from state and local agencies. Thus, in "implications for ostomized children care", relatives reinforced the need to obtain information on the supply of appropriate products; the correct use of the devices; the possible complications and complications; and how to follow the evolutionary process of the underlying disease (5,18) .…”

“…Guidance should be in accordance with the individual's sociocultural understanding or relative. Studies with a qualitative approach present reports of mothers feeling safe and receiving information, as devices require skill to handle them (1)(2)(3)(4)18) .…”

Families’ concerns about the care of children with technology-dependent special health care needs

“…The international literature refers to these children as those with special health care needs (CSHCN). This term is employed in Brazil, 1,2 and the increase in this group of children is directly related to three factors: preventable diseases that become chronic in children due to hospitalizations and rehospitalizations, perinatal conditions, and congenital malformations. 3 Continuing health care must be provided to CSHCN, whether on a temporary or permanent basis.…”

“…Such care demands are classified into five groups: developmental (those who need psychomotor and social rehabilitation); technological (children who depend on some form of medical technology in their body to survive); pharmaceutical (drugdependent children); modified standard (requiring aid for common everyday tasks); and mixed (for those demanding associated care). 1,2,4 Patients with technological needs are also known as technologydependent children. The Office of Technology Assessment (OTA) states that the term "technologydependent children" refers to those who both need medical devices to compensate for the loss of a substantial vital body function, and require skilled long-term nursing care to avoid death or later deficiencies.…”