SOFRIMENTO CRÔNICO: PERCEPÇÃO DE MÃES DE CRIANÇAS DEPENDENTES DE VENTILAÇÃO MECÂNICA

Objective: To know the mothers’ perception of the main difficulties in the care of children with special needs dependent on mechanical ventilation. Methods: A qualitative research conducted from August to November 2013 at the Dr. Waldemar Alcântara Hospital in Fortaleza, CE. Respondents were seven mothers of children under mechanical ventilation. Data were collected using sociodemographic questionnaires and guiding questions, from which emerged thematic categories that underwent content analysis, with data being discussed in the light of the relevant literature. Results: The average age of mothers ranged 18-36 years. Six were married or had formed a common-law marriage. Education level ranged from illiteracy to complete secondary education. Family income was up to one minimum wage. Mothers reported anguish and fear regarding the initial impact of the diagnosis, with little understanding of the biomedical language and a lot of questions during the whole period after diagnosis and during hospitalization. Conclusion: Difficulties involve aspects related to family abandonment, the distancing from the other children at the expense of the care of the disable child, the difficulty in engaging in social relationships, and the prognosis and care of their child. The hospital environment generates psychological repercussions on the expectation and hopelessness regarding the cure of their child, as they know they might die. Healthcare professionals can favor incredible transformations, generating a new “care”, broader and humanized, facilitating the recovery/restructuring of the family within this new universe.