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Hermenêutica e narrativa: a experiência de mães de crianças com epidermólise bolhosa congênita* Andrea Caprara 1
Maria do Socorro Castro e Veras 2

CAPRARA, A.; VERAS, M. S. C. Hermeneutics and narrative: mothers’ experience of children affected by epidermolysis bullosa, Interface - Comunic., Saúde, Educ., v.9, n.16, p.131-46, set.2004/fev.2005.

The paper analyses the narrative of three mothers of children affected by Epidermolysis Bullosa (EB), adopting an approach inspired by the phenomenological hermeneutics of P. Ricoeur. Epidermolysis Bullosa is a severe and rare disease affecting mostly the skin and mucosae, producing deep skin troubles and suffering to the children affected and the family members involved in caring for him or her. Experience of suffering, stigma, fear of contagion, relation with health professionals, particularly medical doctors, care practices, are some of the issues that have been considered in the paper. The exchange of experiences promoted by social networks can improve the quality of life of EB patients as well as providing social support to family members. Moreover, the improvement of this movement can stimulate health professionals and health managers to adopt more effective and equitable public policies.
KEY WORDS: Hermeneutics; narrative analysis; epidermolysis bullosa.
Analisam-se os discursos de três mães de crianças portadoras de Epidermólise Bolhosa (EB) congênita, com uma abordagem inspirada na hermenêutica fenomenológica de P. Ricoeur. A Epidermólise Bolhosa é uma grave e rara doença que se manifesta na pele e mucosas que, ao serem afetadas, produzem rupturas e sofrimentos para as crianças portadoras e os familiares diretamente envolvidos com o cuidado. A experiência do sofrimento, o estigma, o medo do contágio, a relação com os profissionais de saúde e em particular com os médicos, as práticas de cuidado, são alguns dos principais temas analisados. A troca de experiências promovidas por redes