Vulnerabilidade das crianças com necessidades especiais de saúde: implicações para a enfermagem

Abstract

This qualitative-based, descriptive, exploratory research aimed to provide an account of the vulnerability of children with special health needs in terms of required care and everyday life support. The subjects were ten family members/ caregivers of children who were approached in a pediatric admission unit of a teaching hospital. Data were produced by means of the creative and sensitive method, mediated by creativity and sensitivity group dynamics and submitted to French discourse analysis. Results pointed out that the individual, social and programmatic vulnerability of children was translated into their clinical frailty, difficulty in gaining access to healthcare services, and absence of specific public policies. The study recommends that the referral and counter-referral system, as well as the specific healthcare public programs and policies aimed at this clientele, be restructured. For this purpose, nursing professionals should strive to actively listen to family members/caregivers and subjectively recognize the home-based caregiving process carried out by the families.Descriptors: Child Health. Pediatric Nursing. Vulnerability. Family. RESUMO Trata-se de uma pesquisa qualitativa, descritiva e exploratória que objetivou descrever a vulnerabilidade das crianças com necessidades especiais de saúde para o cuidado e manutenção da vida no cotidiano. Os sujeitos foram 10 familiares/cuidadores de crianças em uma unidade de internação pediátrica de um hospital de ensino. Os dados foram produzidos por meio do método criativo e sensível, mediado pelas dinâmicas de criatividade e sensibilidade e submetidos à análise de discurso francesa. Os resultados apontaram que as crianças possuem vulnerabilidade individual 173Versão on-line em Português/Inglês: http://www.scielo.br/ scielo.php?script=sci_serial&pid=1983-1447&lng=pt&nrm=iso Silveira A, Neves ET. Vulnerability of children with special health care needs: implications for nursing. Rev Gaúcha Enferm. 2012;33(4):172-180. INTRODUCTIONChild care practices have been changing in recent years. The scientific and technological advancements achieved in the 1990's strongly contributed to the enhancement of the survival of children once deemed to be clinically incurable and/or extremely fragile. Such advancements have resulted in larger numbers of children in need of complex medical care; hence, the indices of children presenting with chronic and/or incapacitating diseases have skyrocketed and many of them are wholly dependent on technology. The so-called "CRIANES" in Brazil were initially named CSHCN, or Children with Special Health Care Needs, in the United States (1) . This clientele need home-based care that goes beyond the basic care offered to other children and teenagers.In Brazil, the growth in the CRIANES group is related to preventable illnesses that evolve to chronic diseases due to successive readmissions of the child and to perinatal afflictions that evolve into complex diseases following intense treatment, in addition to congenital malformations that requ...

Accessibility of children with special health needs to the health care network

“…The economic classification indicates a predominance of economically vulnerable families, corroborating the results of other research in affirming that the challenges experienced exceed the clinical frailty of the child and concern social vulnerabilities such as low income and the caregivers' low schooling levels, for example (15,25) .…”

“…The DCS Talking Map is a data production technique that aims to know the relationships established between caregivers and the community in general (14)(15) . The following discussion question was asked: "Having your home as a starting point, what is (are) the place(s) where you take your child to receive health care and education, among other activities?…”

Vivência das famílias e o custo no cuidado de crianças e adolescentes com mielomeningocele

“…Em pesquisa que avaliou a experiência financeira de famílias no cuidado às crianças e adolescentes com câncer, realizada em município do estado de São Paulo, Brasil, demonstrou que o aumento dos gastos ocorreu, majoritariamente, com alimentação, transporte, aquisição de materiais não concedidos por serviços de atenção básica e necessidade de reformas estruturais no domicílio (26) .…”

Avaliação da qualidade da atenção primária à saúde de crianças e adolescentes com HIV: PCATool-Brasil

“…The monitoring of these children and adolescents permeates aspects related to social vulnerability, dependency on the care performed by professionals and family. This is the result of clinical weakness (4) , which indicates the need for continuous monitoring in the health services (5) , and, in turn, implies the programmatic vulnerability (6) , such as the need for health care, which should happen seamlessly between specialized services and Primary Health Care (PHC) (7) .…”