Child with autistic spectrum disorder: care from the family

Abstract

Objective: To know the experience of the family in the care of the child with Autism Spectrum Disorder (ASD) and to discuss possibilities of health care. Method: Descriptive research with qualitative approach, carried out with 15 families of children with ASD, living in two municipalities in the interior of the state of São Paulo, from October 2016 to March 2017. The Symbolic Interactionism was used as theoretical reference, and Narrative Analysis, as method. Results: Families perceive signs of autism, however, believe that there are not suspicious behaviors, but the child's personalities. When diagnosis is defined, family acceptance is painful and sad. The mother shows to be the main caretaker, while the father remains in the background. A significant change of direction of the family towards the care/attention/stimulation of the autistic child is observed. Conclusion: Unveiling family experience in the care of children with ASD amplifies strategies for reinforcement and adaptation.

Family experiences in discovering Autism Spectrum Disorder: implications for family nursing

“…The meaning that such behaviors or changes may be personal characteristics of the child or his own age and that he would pass. This meaning can be linked to the feeling of fear that permeates this initial phase and family relationships, especially related to the idealized future built by the family for the child (5)(6)(7)(8)(9)(10)(11)(12)(13)(14)(15)(16)(17)(18) . Therefore, when parents notice that the child's development does not occur in the expected way, they begin to pay attention to behaviors.…”

“…The family also has needs amid the frustration experienced by the diagnosis, such as negative emotional impact, needs in family relationships and social rights (5) . The inability of professionals to communicate the diagnosis is also considered a family need, as well as clear information about the disorder (8) .…”

“…These changes impact family life and are described as difficult to face. They involve changes in family dynamics and relationships, social interaction with friends, burden of care, marital conflicts and social isolation (4)(5) . This context requires a process of adaptation and changes in the routine and personal life of parents and children (6) .…”

“…Care is still based on a child-centered model and disability and condition, mainly by specialist health professionals. The care provided to families is focused, especially, on guidance on the disorder and the new demands of child care, not receiving assistance in their needs as a family unit (5)(6)(7)(8)(9)(10)(11)(12) .…”

Imaginários de mulheres que sofreram perda gestacional

“…Alguns estudos, entre os quais podemos citar os de Martins, Azevedo e Afonso (2018) e de Mapelli et al (2018), indicam que ainda persiste certa idealização da maternidade. Não soaria estranha, face essa idealização, uma fantasia de que a perda gestacional corresponderia a uma forma de punição da mulher que se sentiria, ao transitar pelo campo "Vazio eterno", como que condenada a um sofrimento infindável.…”