The objective of this study is to understand the way mothers of children suffering
from Cystic Fibrosis cope with the loss of the health of their child, considering that
any evolution of the disease poses a death threat to the life of the child, when the
absence of treatment adherence. Cystic Fibrosis is an incurable and lethal chronic
genetic disease, with guarded prognosis, requiring high impact treatment and intensive
care. The methodology is based on a qualitative clinical approach, with a
particular focus on content analysis. Eleven mothers of children diagnosed with
Cystic Fibrosis and benefiting from the "Cystic Fibrosis Support Programme" of
João de Barros Barreto University Hospital took part in this study. Data were collected
through a semi-structured interview with the mother and by realizing two
drawings aimed at understanding the mourning of these mothers in relation to the
disease of their child, the losses and the significance associated with the illness of
the health of the child. The results indicate that the mothers experience the mourning
for the health loss of their child by redefining the concepts associated with
death and end of life. This is confirmed by the hypothesis that the mother of a child
suffering from cystic fibrosis knows the disease, is fully aware of the lethal risks
associated and considers that the symptomatic treatment undergone can improve
the quality of life of her child. For them, the proximity of the existence of an imminent
death leads to a reorganization as well as to internal, external, personal and
family changes contributing to redefining the meaning of their life, since the moment
when they face the disease.
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