| Autor: |
Freitag VL; Universidade de Cruz Alta. Rodovia Municipal Jacob Della Méa km 5,6, Parada Benito. 98005-972 Cruz Alta RS Brasil. verafreitag@hotmail.com., Motta MDGCD; Universidade Federal do Rio Grande do Sul. Porto Alegre RS Brasil., Debatin G; Universidade Federal de Santa Catarina. Florianópolis SC Brasil., Milbrath VM; Universidade Federal de Pelotas. Pelotas RS Brasil., Bazzan JS; Universidade Federal de Pelotas. Pelotas RS Brasil., Gabatz RIB; Universidade Federal de Pelotas. Pelotas RS Brasil. |
| Abstrakt: |
The scope of this article was to understand the self-perception of children/adolescents who live with siblings with disabilities. It involved qualitative research, with a hermeneutic-phenomenological approach, with 20 children and adolescents who live with a disabled sibling from a municipality in the state of Rio Grande do Sul/Brazil. Phenomenological interviews, field diaries and hermeneutic interpretations were used. There were gaps in care, need for attention and understanding on the part of the family, due to the attention given to the disabled sibling. Also, the fear and anguish of the death of the grandparents, the death of the disabled sibling, the nostalgia of the grandparents after their death. It was shown that these children/adolescents live together and question the birth and existence of the sibling. By shining a light on the child/adolescent's life experience, gaps and weaknesses in the relationship with parents, in health care, in situations of vulnerabilities experienced by the child/adolescent and family were revealed. Thus, attention needs to be devoted to this population, considering that they live with siblings with disabilities, and have several vulnerabilities that need to be discussed, aiming at developing inclusive and efficient care strategies. |
