Assistência de enfermagem à criança com doença de Pompe: estudo de caso

Abstract

Aim: to identify diagnoses, interventions and expected nursing outcomes for the child with Pompe disease using the International Classification for Nursing Practice® 2017. Method: case study conducted in December 2017, with a mother of child with Pompe disease. Results: seventeen nursing diagnoses were presented, distributed among the demands of medicated, technological, habitual, modified, developmental, and family care. Discussion: the nursing diagnoses were related to the treatment and complications presented by the child as a result of Pompe disease, increased by the family needs to develop the care at home. Conclusion: it was verified that the classification of the nursing practices allowed creating more specialized possibilities to elaborate and execute a care plan based on the real needs of this child, allowing the possibility of generalization for the patients with the same disease.

Mental health of parents of children and adolescents who require special health care

“…The vulnerabilities of families of patients who require complex and differentiated care for a long period have hospital discharge as a milestone, considering the various changes implemented in family daily life. Studies identify that, at the time of discharge, there is a transfer of responsibility for care to the family who do not have the necessary knowledge to exercise this care in the home environment ( 2 , 7 , 16 ) .…”

“…It is important to highlight that this overload is not only related to the demands of care, but to feelings of concern about the child’s illness, impotence and lack of knowledge about how to care for the child ( 7 , 17 - 18 ) . Although the chronic condition affects the entire family, in general, the mother, as she is the one most involved in care, starts to live for her child, giving up her own life ( 19 ) .…”

“…From this perspective, it is important that health professionals have a different look at these family members who have also become ill and need care ( 7 , 25 ) , with priority given to welcoming, qualified listening, support and promotion and protection actions. health ( 17 , 29 ) .…”

“…Therefore, the recognition and identification of vulnerability, by the interprofessional team, present in the lives of children and adolescents who require special health care, as well as their families, is important, as it can contribute to the recognition of health demands. care for both with a view to comprehensive health care ( 7 , 32 ) .…”

“…It is important to highlight that the main caregiver is in the family, since health professionals are temporary, but the family, theoretically, is a constant. In this context, it is family care that maintains the survival and quality of life of its members, justifying including the family as a unit of care and worthy of professional attention ( 7 ) .…”