Acceso usuarios
Ana Sofia da Silva Garcia Jesus Jesus, Helena da Conceição Borges Pereira Catarino, María dos Anjos Coelho Rodrigues Dixe
Introduction: A disabled child or with a chronic illness may at times constrain the exercise of a positive parenting by the child’s or parents characteristics or the difficult environment in which they live.
Objective: This paper is to know what are the difficulties experienced by parents of disabled children disabled in the exercise of their parental role.
Method: We conducted semi-structured interview to a convenience sample of seven parents of children with at least one disability.
Results: The children of these parents had a Prader-Willi Syndrome, 1 autism, 1 beta thalassemia major, a syndrome of DAMP, a grade III hypoxic ischemic encephalopathy and cerebral palsy, a cerebral palsy, epilepsy and bronchiolitis obliterans.
Parents referenced the following difficulties:
Dealing with challenging behaviors, social isolation, difficulties in helping the child understand and cope with their own illness and the differences from other children, depression associated with his condition and treatment to children, conflicts between work and provide child care, integration/cooperation of the school, communication with children, little time for themselves and communication difficulties between the couple at the time of diagnosis.
Discussion: It is important to develop support programs tailored to the needs of parents of children with disabilities to maximize biopsychosocial development of the child.
