Do luto a luta: compreendendo a participação da família no cuidado a criança com transtorno do espectro autista.

Abstract

The diagnosis of Autistic Spectrum Disorder (ASD) in children, syndrome characterized by qualitative deficits in communication, social interaction and behavior pattern, back important repercussions in the family context. The family permeates major adjustments in their daily lives in order to face the new reality. However, often not prepared to face the revelation of the syndrome and participate in the care process. Objective: To understand the involvement of the family in caring for children with Autism Spectrum Disorder (ASD). Methodology: This was an exploratory descriptive research qualitative approach conducted with 10 caregivers of autistic children accompanied the Psychosocial Care Center Children Youth (CAPSIS) Live Guys, located in Campina Grande - PB. Data collection lasted three months being held from June to August 2013. The instrument used included objective and subjective questions involving the identification and characterization of the socio-demographic informants as well as related to the central theme of the study. For the treatment of qualitative data we used the technique of content analysis in thematic. The research protocol was approved by the Ethics and Research of the University Hospital Alcides Carneiro CAAE under no. 16216013.2.000.5182. Results: The analysis of the interviews enabled the elaboration of meaning units titled: "The disclosure of diagnosis in autistic children and the effects on the family" and "Family participation in care and coping strategies in the face of the diagnosis and treatment of autistic child. " From the first, they have created two categories (Category I: The impact of disclosure of the diagnosis of autism for the family, and Category II: The context and the characteristics of diagnosis disclosure: the place, the time and the dialogic relationship between professional and family) that portrayed the perception of the participants before the diagnosis and the impact of his revelation in the family. To facilitate further discussion about the second core emerged three categories (Category I: Changes in family relationships and the burden of the mother in the care of autistic children; Category II: Family participation in care the autistic child: highlighting the advantages and difficulties, and Category III: Faith, religion and the pursuit of professional support as Coping strategy used by families facing the diagnosis of autism) which portrayed on changes in family relationships, daily routine as well as on its participation in the care process. Also was pictured overload maternal care in the autistic child, with the participation of other family members established punctually. The coping strategies used by families facing the diagnosis and treatment of the child were related to the search for faith and professional support. Conclusion: Autism takes the family to live disruptions by compromising the relationships among its members, derail social activities and adapt to the new reality. The coping measures were focused on the emotion and problem being the mother figure primarily responsible for the care the autistic child. The professional support when diagnosis and treatment of autism are crucial to the acceptance and family coping.