Family challenges experienced in the care of children with special health needs

Abstract

Children with Special Health Needs are limited in carrying out activities of daily living, leaving them partially or totally dependent on their family members or caregivers. A descriptive study with a qualitative approach, aiming to describe and analyze the challenges experienced by family members in the care of children with special health needs. Data collection was carried out at a rehabilitation center in a state in the northeast of Brazil, from March to May 2016. It was conducted with 15 caregivers, using a semi-structured interview script. From the analysis of the speeches, three thematic categories emerged: The (re) organization of the life of caregivers and relatives of children with special needs, the context of the health care network and problems with the social network of the insertion of special needs children. The results show a predominance of caregivers, in the age group of 31 to 40 years. Mostly women, with study between six and twelve years. It is observed that special needs children change the whole daily life of the family, which needs a special adaptation to maintain integral assistance to the family, and still needs to (re) structure to maintain the family's necessary living conditions. The care and treatment provided by the reference service to the interviewed group was considered satisfactory, but these still indicate that the network does not guarantee access and care, proportional to the health needs of each user. There is difficult access to transportation for children and their caregivers. Accessibility still being a limiting issue. It is concluded, with this study, that there is a need for the social inclusion of these children, the awareness of the population in welcoming the child and the importance of socialization, so that the challenges experienced by the caregivers of these children will diminish or cease to exist.