Experiences of families of children with disabilities

• Autor(a) principal: De Sousa Lima, Breno
• Data de Publicação: 2021
• Outros Autores: Siqueira Lima Freitas, Cibelly Aliny, Alves Monteiro Da Silva, Maria Adelane, De Azevedo Mazza, Veronica, Cordeiro Eloia, Sara, Martins da Silva, Géssica Fernanda
• Tipo de documento: Artigo
• Idioma: por
• Título da fonte: Revista Enfermagem Atual In Derme
• Texto Completo: https://revistaenfermagematual.com/index.php/revista/article/view/911
• topic: Família; Crianças com deficiência; Organizações em saúde; Family; Children with disabilities; Health organizations

Objective: to describe the experience of family members who have a child with a disability. Methodology: This is an excerpt from the research: Experience of families made up of children with disabilities: organization of practices and needs with funding from CNPq. It is a descriptive qualitative approach study of the case study type, carried out at the Association of Parents and Friends of the Exceptional (APAE) located in the northern region of Ceará. The study consisted of 23 relatives of children with disabilities. Data collection took place through semi-structured interviews. Results: the predominance of the female sex as the main caregiver of the child in the age group between 30 and 40 years. Most of them have completed high school, with a monthly income of 1 minimum wage, which comes from the Continuous Payment Benefit. In relation to children, the male gender predominated, diagnoses of cerebral palsy and autism, the age group of 04 and 07 years. In the analysis of the family members' speeches, it was identified that the experiences involve frustrated expectations in relation to the child; loneliness in child care; the difficulties faced in the family in the child's rehabilitation; the need for specialized services to care for the child. Conclusion: taking care of a disabled child causes several changes in the family, especially in the mother's life, who is configured as the main caregiver.