Experiences from families of children with cerebral paralysis in context of social vulnerability

Abstract

the social vulnerability influences how the family bears the chronic condition. Professionals and strategies of public health are a power to minimize impacts including those related to the family budget, but they have not been effective. They need to be sensitized to become supporting resources, to offer and to guide the access to the support networks and to spur the social service in action when necessary. This study adds knowledge to the already existing by pointing out peculiarities of the family experience in situations regarding two variables of difficult handling: chronicity and social vulnerability, evidencing the role of the professional in search of the solution for the confrontation of demands and sufferings together with the family.

Family resources and promotion of development of children with cerebral palsy

“…This strengthens the idea that having a child with CP of helplessness, insecurity and frustration in the face of the child's functional and developmental constraints and losses. Gradually, the family develops strategies to adapt to the context and the needs of the child to elaborate a new routine 18 .…”

“…27(2): 166-174. DOI:http://dx.doi.org/10.7322/jhgd.122707 alters family dynamics, and the family (group), as well as its individual members, develop psychological, interpersonal and care strategies to deal with the situation by adapting and moving on 18 .…”

“…Having the family as a partner in the treatment of the child with CP improves care of the child 18 . Family and child characteristics influence the type of treatment sought and offered to families 29 .…”

Children and Adolescents With Cerebral Palsy: Analysis of Care Longetudinality

“…1,9 Chronic and incapacitating illness, which do not necessarily coincide with birth, alters the preexisting dynamics, affecting the personal, conjugal, professional and social life of families, causing limitations to children and their families. 3,9 In this study, the way of coping and the elaboration of new life projects by the families of children with cerebral palsy were quite diverse. In some cases, parents and grandparents received the news soon after birth during the stay in the ICU; other families noticed changes in the development of children in the recent months after birth and went in search of medical services.…”

Perfil epidemiológico das crianças com paralisia cerebral em atendimento ambulatorial [Epidemiological profile of children with cerebral palsy receiving care at outpatient clinics]

“…Esse perfil de renda também foi evidenciado em outro estudo que abordou crianças com PC realizado por Frota et al 13 , que, na época o salário mínimo vigente era de R$ 622,00, demonstrando um baixo poder aquisitivo entre esta clientela. Diante desta realidade financeira, percebe-se que as fontes de apoio e redes sociais podem ser consideradas uma forma de promover saúde, apesar das dificuldades enfrentadas pelas famílias que convivem com a cronicidade de algum membro familiar, uma vez que o fator financeiro, elemento de vulnerabilidade social, é importante fonte de preocupação e angústia 14,15 . Pais de crianças com paralisia cerebral apresentam nível de estresse maior do que os de crianças sem deficiência, o que reforça a necessidade de suporte familiar 16 .…”