Crianças com necessidades especiais de cuidados múltiplos, complexos e contínuos: a vivência dos cuidadoresfamiliares

• Ano de defesa: 2015
• Autor(a) principal: Dias, Beatriz Caroline
• Tipo de documento: Dissertação
• Tipo de acesso: Acesso aberto
• Idioma: por
• Instituição de defesa: Universidade Estadual de Maringá; Brasil; Programa de Pós-Graduação em Enfermagem; UEM; Maringá, PR; Centro de Ciências da Saúde
• Palavras-chave em Português: Enfermagem pediátrica; Enfermagem familiar; Crianças com necessidades especiais; Cuidados de saúde domiciliares; Brasil.; Family Nursing; Family Health; Disabled Children; Pediatric Nursing; Child Health; Health Services Needs and Demand; Brazil.; Ciências da Saúde; Enfermagem
• Link de acesso: http://repositorio.uem.br:8080/jspui/handle/1/2485

Children with special needs of multiple, complex and continuous care, possess chronic conditions, present functional limitations, and need comprehensive medical care and technological apparatuses for life maintenance, so taking care of these children represents great challenge for their families. Epidemiological data of those children, their demands of care and their families' needs cannot be found in Brazil. The objectives of the study were: to trace the children's profile, to understand the quotidian of the family to accomplish the home care, to describe the dynamics and the social net of support of the families, to discuss the children's invisibility and their families in the context of Family Health Strategy program (FHS) and to identify the vulnerability of the children in the family context. The study involved two methodological paths: a cross-sectional quantitative-descriptive one carried out with 68 families of children with special needs of multiple, complex and continuous care, and a qualitative one, accomplished with 11 families of 13 children. Data was collected from June to September 2015, through home visits, using a semi-structured interview. A genogram and an ecomap were developed. Initially, a survey took place in a public institution of special education to identify children that met the study criteria. Thus, 91 children were located and 68 of them were studied. They were between 01 and 11 and five years-old average, 41 children (60.3%) were male, 33 of them (48.5%) belonged to the low income class C, 31 (45.6%) were receiving monthly benefit from government, 57 (83.8%) possessed private health insurance, being necessary co-participation in 63.1% of the cases. All of the children showed the need of change in their regular and development care, 63 (92.6%) were depending on technology for survival and maintenance of the daily activities and 49 (72%) needed medical treatment. All the families were shown to be in vulnerable state, however, 8.8% presented up to 40% of family vulnerability, being the access to the work and the family income and the education conditions the dimensions of greater index. The analysis of the qualitative data shows that the subsistence of the families is permeated by countless difficulties, fears and needs, followed by the lack of abilities on home care, little assertiveness and little access to the health services, lack of assistance from the FHS program, little knowledge on the rights of children with special needs, unpreparedness of the society to receive the child with multiple and complex care in the social conviviality. There was still, changes in the family routine and need of readjusting the role of their members for better understanding the disease and accomplishment of the home care. Adaptation of the health services is needed in order to assist this population. Improvement on the management in order to develop, monitor and make public politics adapted to the needs of the families, as well as better qualification of the health professionals, especially the 12 ones that compose the FHS team to better assist the families in their biopsychosocial aspects, exercising caregiving centered in the family to embrace their needs and to supply quality attendance, mainly in the domicile ambit.