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

Journal title PSICOLOGIA DELLA SALUTE
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
DOI is like a bar code for intellectual property: to have more infomation click here

Below, you can see the article first page

If you want to buy this article in PDF format, you can do it, following the instructions to buy download credits

Article preview

FrancoAngeli is member of Publishers International Linking Association, Inc (PILA), a not-for-profit association which run the CrossRef service enabling links to and from online scholarly content.

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

  1. Atkinson R. (1998). The life story interview. Sage University Paper Series on Qualitative Research Methods, 44, Sage: Thousand Oacks.
  2. Benini P. (2008). Crisi: tra soggettività e resilienza [Crisis: between subjectivity and resilience], Magma, 6 (1), 1.
  3. Bruner J. (1990). Acts of Meanings. Cambridge (Mass.)-London: Harvard University Press.
  4. Bruner J. (2002). La fabbrica delle storie [The factory of tales]. Roma-Bari: Laterza.
  5. Brustia R.P. e Agostini F. (2008), a cura di, Psicologia della genitorialità [Parenting psychology], Torino: Antigone.
  6. Cyrulnik B. (2008). Autobiographie d’un épouvantail [Autobiography of a scarecrow]. Paris: Odile Jacob.
  7. Cyrulnik B. e Malaguti E. (2005), a cura di, Costruire la resilienza [Building resilience]. Trento: Erickson.
  8. Darchis E. (2000). L’instauration de la parentalitè et ses avatars [The establishment of parenthood and avatars]. Le divan familial, 5: 27-41.
  9. Darras B.T., Miller D.T. and Urion D.K. (1993-2013). Dystrophinopathies. In: Pagon R.A., Adam M.P., Bird T.D., Dolan C.R., Fong C.T. and Stephens K., editors, GeneReviews™. Seattle (WA): University of Washington.
  10. Freda M.F. (2008), Narrazione e intervento in psicologia clinica [Narration and intervention in clinical psychology]. Napoli: Liguori.
  11. Good B.J. (1994). Medicine, Rationality, and Experience: An anthropological Perspective. Cambridge: Cambridge University Press.
  12. Gardou C. (2005). Fragments sur le handicap et la vulnérabilité [Fragments of disability and vulnerability]. Ramonville-Saint-Agne: Edition Erès.
  13. Giani U., Osorio G.M. e Parrello S. (2009), La narrazione della malattia come spazio per la ricerca del sé [The narrative of the disease as space for search of the Self]. In: Giani U., a cura di, Narrative Based Medicine e complessità [Narrative Based Medicine and complexity]. Napoli: ScriptaWeb.
  14. Marinopoulos S. (2008), Nell’intimo delle madri [In the depths of the mothers], Milano: Feltrinelli.
  15. Osorio G.M. e Parrello S. (2012). Malattia e bisogno di relazioni significative: studio per l’ampliamento dell’IPQ-R in un gruppo di operatori sanitari della regione Campania [Illness and need for meaningfull relationships: study for the expansion of the IPQ-R in a group of Campania health care operators]. Psicologia della Salute, 3: 75-92. DOI: 10.3280/PDS2012-00300
  16. Pancaldi A. (2011). Quando nasce un bambino disabile: tra con-divisione e in-formazione. Cosa si è scritto in materia [When a child is born disabled: between division and with-in-training. What has been written on the subject]. Spazi e modelli, 8 (2): 69-77.
  17. Panier Bagat M. e Sasso S. (1997), a cura di, L’altra crescita [The other growth]. Milano: FrancoAngeli.
  18. Parrello S. e Caruso S. (2006). El nacimento de un hijo con minusvalia. Ruptura de los canones y la posibilidad de narrarse [Birth of a child with disabilities. Rupture of the fees and the ability to tell]. Revista Electrónica de Psicología Iztacala, 10: 10-28.
  19. Parrello S. (2008). La malattia come sfida: narrazione di sé e costruzione di significato [The disease like a challenge: narration of self and building of meaning]. In: Mastropaolo M., a cura di, La psicologia della relazione di aiuto [The psychology of the helping relationship]. Roma: Effigi.
  20. Parrello S. (2012). Donne smarrite: le vicende del femminile nella famiglie con figli disabili [Women lost: the story of women in families with disabled children]. Frenis Zero, 9 (17): 2-11.
  21. Parrello S. and Osorio G.M. (2011). Historias oficiales, historias dominantes e historias personales: instituciones, cultura y desarrollo de sí mismo. Societal and Political Psychology International Review, 2 (1): 67-79.
  22. Reinert M. (1986). Un logiciel d’analyse textuel: ALCESTE [A logiciel d’analyze textuel: ALCESTE]. Cahier de l’Analyse des Données, 3: 187-198.
  23. Stern D.N. e Bruschweile-Stern N. (1999). Nascita di una madre [Birth of a mother]. Milano: Mondadori.
  24. Tesio E. (2000), a cura di, L’uovo fuori dal cesto: dinamiche affettive con i disabili e le loro famiglie [The egg out of the basket: affective dynamics with disabilities and their families]. Torino: UTET.
  25. Walsh F. (2006), Strengthening Family Resilience. New York: The Guilford Press.
  26. Wengraf T. (2001). Qualitative research interviewing: biographic narrative and semi-structured methods. London: Sage.
  27. Winnicott D.W. (1971). Playing and Reality. London: Tavistock Publications.

  • Dinamiche discorsive nella ristrutturazione dei ruoli genitoriali in famiglie con malati rari Altomare Enza Zagaria, Rosa Scardigno, Caterina Colonna, Giuseppe Mininni, in PSICOLOGIA DELLA SALUTE 2/2018 pp.70
    DOI: 10.3280/PDS2018-002008
  • The experience of living with a chronic disease in pediatrics from the mothers’ narratives: The Clinical Interview on Parental Sense of Grip on the Disease Livia Savarese, Maria Francesca Freda, Raffaele De Luca Picione, Pasquale Dolce, Raffaella De Falco, Maria Alessio, Mauro Cancian, Adriana Franzese, Maria Domenica Guarino, Roberto Perricone, Angelica Petraroli, Riccardo Senter, Claudia Traverso, Andrea Zanichelli, Eugenio Zito, Maria Bova, in Health Psychology Open 2055102920971496/2020
    DOI: 10.1177/2055102920971496
  • Caregivers’ Sensemaking of Children’s Hereditary Angioedema: A Semiotic Narrative Analysis of the Sense of Grip on the Disease Maria Francesca Freda, Livia Savarese, Pasquale Dolce, Raffaele De Luca Picione, in Frontiers in Psychology 2609/2019
    DOI: 10.3389/fpsyg.2019.02609

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