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Building motherhood: experiences of mothers of children with short bowel syndrome

Abstract

The experience of mothers of children diagnosed with a severe chronic health condition, short bowel syndrome (SBS), has been addressed by a study that took place in a referral hospital in Rio de Janeiro in 2014, with 10 participants. This paper aims to explore aspects of maternal interpretation of the corporeality of babies and its effect on the construction of motherhood. The biographical method has been used, and an interview guide that led to the production of narratives. The interpretation of data, through a dialogue between the hermeneutic depth of Thompson and symbolic interaction, recognized and appreciated the fact that maternity constructions are inscribed in the order of interaction. The different bodies, which seem to defy the human condition in the interpretation of mothers, acquire meaning and intentionality. The dimension of intersubjectivity guarantees the recognition of the baby. The paper concludes that technological devices and special care triggered for the survival of babies with severe malformations may generate a detachment and a sense of exclusion by mothers. Addressing these women must transcend the utilitarian practices based on a "training" of care.

Key words:
maternity; short bowel syndrome; body; chronic disease; children

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