Extending the life: Duchenne Muscular Dystrophy into the mothers’ tales

Author/s Santa Parrello, Nunzia Giacco
Publishing Year 2014 Issue 2014/1
Language Italian Pages 12 P. 113-124 File size 773 KB
DOI 10.3280/PDS2014-001006
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The Duchenne Muscular Dystrophy (DMD) is a genetic progressive disorder, transmitted by mother to son, currently it is not curable. In order to understand the experience, the narration of the protagonists - patients, family and health professionals - is particularly valuable because it gives meaning to a non-canonical life trajectory. The aim of this study was to provide an opportunity of autobiographical account to mothers having children with DMD, disconfirming the social conspiracy of silence, to better understand the dynamics of their difficult parenthood. Consistent with a narrative approach, this study aimed to analyze the narrative methods through which the polled women rebuild their experience, starting from the hypothesis that the peculiarity of the DMD model of genetic transmission, the severe disability, and the poor prognosis make it particularly difficult to tell, and especially telling about them self. At public health facility, 10 mothers (aged between 30 to 59; regular social and cultural backgrounds), having children with DMD (aged between 5 to 19) have been interviewed. A semanticstructural analysis (ALCESTE software) was used to analyze the text. The textual analysis identified 6 lexical worlds, which confirm the enormous material and psychological difficulties that mothers often faced on their own: 1. The suspicion and guilt (13%), 2. The burden of the diversity (15%), 3. An endless caregiving (38%), 4. The timing of the disease (13%), 5. Attempts to normal life (11%), 6. The future between fear and hope (9%). However, their willingness to narrate about them self is configured as an element of possible resilience, that can be used to develop projects of social support and clinical intervention.

Keywords: Duchenne Muscular Dystrophy, maternity at-risk, illness, storytelling

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Santa Parrello, Nunzia Giacco, Aggiungere vita ai giorni: la Distrofia Muscolare di Duchenne nella narrazione delle madri in "PSICOLOGIA DELLA SALUTE" 1/2014, pp 113-124, DOI: 10.3280/PDS2014-001006