Rede de Suporte Social de Mães de Crianças com Paralisia Cerebral em Belém do Pará

Abstract

O estudo de redes sociais permite localizar estruturas dentro de redes e observar a dinâmica do grupo em função das relações dos membros entre si. O objetivo deste trabalho foi analisar a rede social pessoal de mães de crianças com paralisia cerebral em relação ao tipo de apoio oferecido, frequência de contato e intensidade de relações estabelecidas. A pesquisa foi submetida ao Comitê de Ética do Instituto Evandro Chagas, com parecer favorável (1.758.751), seguindo o previsto pela Resolução nº 510, de 07 de abril de 2016 do Conselho Nacional de Saúde. Participaram deste estudo 30 cuidadores de crianças com paralisia cerebral atendidas em dois serviços especializados em reabilitação e desenvolvimento infantil em Belém do Pará. Foram aplicados um questionário sócio-demográfico e um questionário de Redes Sociais Pessoais. Os dados foram analisados com auxílio do pacote estatístico SPSS, versão 20.0 e do software de análise de redes sociais Egonet. Os resultados apontaram o predomínio de vínculos do tipo familiar, com redes compostas em maioria por adultos que ofertam apoio do tipo “afeto e carinho”. Este estudo confirmou os dados da literatura ao indicar que as redes sociais podem funcionar como importantes fontes de apoio a cuidadores de crianças com paralisia cerebral.

Cerebral Palsy: Parental Stress of Caregivers

“…The overload of care tasks associated with low family income can make it difficult for caregivers and their children to integrate more broadly into society. These aspects may even restrict access to health services and obtain technologies that favor accessibility and communication of children (Afonso et al, 2018;Baltor & Dupas, 2013;Ribeiro et al, 2014;Souza, Freire, Cunha & Silva, 2018). The financial aspect plays an important role in care and resizes the priority areas for spending on children with CP.…”

“…The financial aspect plays an important role in care and resizes the priority areas for spending on children with CP. In a situation of social vulnerability, the financial cost of treatment emerges as a source of anguish and concern, as expenses are high and the public system is unable to meet all demands (Baltor & Dupas, 2013;Souza et al, 2018).…”

“…In this sense, informal and formal social support play an important role in family adaptation processes and can act as a protective factor for families of children with CP. As care tasks, fears, and concerns can be shared, besides performing leisure activities and having specialized professional support available, the physical and emotional overload is minimized (Afonso et al, 2016;Dantas et al, 2012;Sawyer et al 2011;Souza et al, 2018).…”

“…Coping with adverse conditions such as CP permeates the identification by the family of its needs, and public actions aimed at accessibility and health promotion (Baltor & Dupas, 2013;Souza et al, 2018). In addition to including primary caregivers in the care of children with CP, the results suggest the need for family-centered actions to promote the development of appropriate coping strategies, skills to cope with their own difficulties in the role of parent and to welcome the child, besides expanding the social support network and facilitating access to assistive technologies.…”

Bridges between families and foster children: family reintegration and adoption of disabled children and adolescents

“…As noted in recent studies (França, 2015;Cunha et al, 2018;Bezerra et al, 2019;Silva et al, 2019;Souza et al, 2018). Brazilian families of children with disabilities are, to a large extent, exposed to a great precariousness in access to the services necessary for both the child and the family.…”