A experiência de mães de crianças com paralisia cerebral: do diagnóstico aos cuidados em saúde

Abstract

This study aimed to understand the experience of mothers of children with cerebral palsy: from diagnosis to health care. It is a qualitative, descriptive-exploratory research, with multiple case study design. Four mothers of children aged 2 to 7 years with a diagnosis of infantile cerebral palsy (PCI) participated in the study. The contact with the participants was made through an Association of Parents and Friends of the Exceptional - APAE, from the interior of the state of Rio Grande do Sul. The results show that the birth of a child diagnosed with PCI promotes changes in family dynamics, from so that all members experience the impact of pathology. The mothers reported occupying the place of primary caregiver, taking responsibility for being present in the treatment of their children. In addition, they also recognize the importance of participating in the construction of their children's therapeutic process, whether in daily care or as an extension of the therapeutic team's work, carrying out practices guided by health professionals. It is understood that the family, when feeling welcomed and valued by the health team, starts to develop coping strategies, maintaining a feeling of hope when investing in the development of their children. Therefore, it is necessary that health professionals are also in contact with the family context, so that they can understand the dynamics of the family in care. Therefore, it is of utmost importance that the health team assists in the process of transmitting the diagnosis with relevant information about the clinical condition of these children, so that this information can be easily apprehended by families, regardless of educational levels.