Discursive dynamics in restructuring parental roles in families with rare disease

Author/s Altomare Enza Zagaria, Rosa Scardigno, Caterina Colonna, Giuseppe Mininni
Publishing Year 2018 Issue 2018/2
Language Italian Pages 21 P. 70-90 File size 259 KB
DOI 10.3280/PDS2018-002008
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 diagnosis of rare disease in developmental age represents a destabilizing turning point in the stories of families, in relation to both "before" - life until that moment - and what is considered as "normal"in accordance with cultural models (Emiliani, Palaret and Mellotti, 2010). In facing with the specific problems of each disease, parents try to "make sense" to their experience through meaning-making and role adaptations. The aim of this study is to investigate the experiences about normalization and parental roles with 5 parents’ couples having to do with rare diseased children, through narrative interviews (Atkinson, 2002). The texts have been analyzed by the means of Discourse Analysis, SAM Model (Mininni et al., 2014) and interpretative repertoires. Main results reveal both thematic and rhetoric peculiarities in the construction of identity positioning in accordance with "traditional" parental role: respectively as primary caregivers and as concrete support figures, mothers live the disease with high emotional commitment, whereas fathers depict it as an obstacle to a "normal" life. Indeed, we found oscillations of positioning between the "warrior mams" and "heartbroken fathers".

Keywords: Rare disease, normalization, parental identity, narrative, diatextual analysis, interpretative repertoires

  1. Anderson M., Elliott E.J., Yvonne A. and Zurynski Y.A. (2013). Australian families living with rare disease: Experiences of diagnosis, health services use and needs for psychosocial support. Orphanet Journal of Rare Diseases, 8 (22): 1-9. DOI: 10.1186/1750-1172-8-2
  2. Arcidiacono F. (2010). Families in transition during their everyday interactions: the role of the context in the reconstruction of argumentation among parents and children. In Family Transitions and Families in Transition. 5th Congress of the European Society on Family Relations. Abstracts. Milan: Athenaeum Centre for Family Studies and Research, pp. 86-87.
  3. Armezzani M. (2004). In prima persona. La prospettiva costruttivista nella ricerca psicologica. Milano: Il Saggiatore.
  4. Atkin K. and Ahmad W.I.U. (2000). Family care-giving and chronic illness: How parents cope with a child with sickle cell disorder or thalassaemia. Health and Social Care in the Community, 8: 57-69.
  5. Atkinson R. (2002). L’intervista narrativa. Raccontare la storia di sé nella ricerca formativa, organizzativa e sociale. Milano: Raffaello Cortina Editore.
  6. Bruner J.S. (1986). Actual Minds, Possible Worlds. Cambridge, MA: Harvard University Press (trad. it.: La mente a più dimensioni. Roma: Laterza, 1988).
  7. Bruns D. and Foerster K. (2011). ‘We’ve been through it all together’: Supports for parents with children with rare trisomy conditions. Journal of Intellectual Disability Research, 55 (4): 361-369.
  8. Caputo A. (2013). La rappresentazione della narrativa della malattia rara: Uno studio qualitativo sulle esperienze dei pazienti. Psychofenia, XVI (28): 73-98.
  9. Dellve L., Samuelsen L., Tallborn A. Fasth A. and Hallberg L. (2006). Stress and well-being among parents of children with rare diseases: A prospective intervention study. Issues and Innovations in Nursing Practice, 53: 392-402.
  10. Emiliani F., Palareti L. e Melotti G. (2010). Famiglie con bambini affetti da malattia cronica: Prospettive di studio e di ricerca. Psicologia clinica dello sviluppo, XIV (2): 233-266.
  11. Fisher H. (2001). The needs of parents with chronically sick children: A literature review. Journal of Advanced Nursing, 36: 600-607.
  12. Fortier L.M. and Wanlass R.L. (1984). Family crisis following the diagnosis of a handicapped child. Family Relations, 33: 13-24.
  13. Goldstein G. and Kenet G. (2002). The impact of chronic disease on the family. Haemophilis, 8 (3): 461-465.
  14. Gray D.E. (2003). Gender and coping: The parents of children with high functioning autism. Social Science & Medicine, 56 (3): 631-642.
  15. Greimas A.J. and Courtés J. (1979). Sémiotique. Dictionnaire raisonné de la theorie du langage. Paris: Hachette.
  16. Huyard C. (2009). What, if anything, is specific about having a rare disorder? Patients’ judgments on being ill and being rare. Health Expectations, 12: 361-370.
  17. Jaeger G., Röjvik A. and Berglund B. (2015). Participation in society for people with a rare diagnosis. Disability and Health Journal, 8: 44-50.
  18. Longo D.C. and Bond L. (1984). Families of the handicapped child: Research and practice. Family Relations, 33: 57-65.
  19. Mancini T. e Borsari G. (2015). Relazione fra identità̀ e malattia cronica: Una rassegna sistematica. Psicologia Sociale, 2: 97-122.
  20. Masa’deh R. (2015). Perceived stress in parents of children with chronic disease: A comparative study, European Scientific Journal, 11 (36): 389-400.
  21. McDougal J. (2002). Promoting normalization in families with preschool children with type 1 diabetes. Journal for Specialists in Pediatric Nursing, 7 (3): 113-120.
  22. Mininni G. (2003). Il discorso come forma di vita. Napoli: Guida.
  23. Mininni G. and Manuti A. (2017). A rose is more than a rose… the diatextual constitution of subjects and objects. Text & Talk, 37 (2): 243-263. DOI 10.1515/text-2017-0005
  24. Mininni G., Manuti A., Scardigno R. and Rubino R. (2014). Old roots, new branches: The shoot of diatextual analysis. Qualitative Research in Psychology, 11: 1-16. DOI: 10.1080/14780887.2014.92599
  25. Parrello S. e Giacco N. (2014). Aggiungere vita ai giorni: La distrofia muscolare di Duchenne nella narrazione delle madri. Psicologia della Salute, 1: 113-124. DOI: 10.3280/PDS2014-001006
  26. Perricone G., Polizzi C., Morales M.R. e Fontana V. (2013). Percezione del funzionamento familiare e strategie di coping in madri di bambini affetti da neoplasia in fase trattamentale, Psicologia della Salute, 3: 101-113. DOI: 10.3280/PDS2013-00300
  27. Potter J. and Wetherell M. (1987). Discourse and Social Psychology: Beyond attitudes and behaviour, London: Sage Publications.
  28. Sarbin T.R. (1986). Narrative psychology. The storied nature of human conduct. New York: Praeger.
  29. Spadin P. (2008). Il caregiver del malato di Alzheimer. Giornale italiano di medicina del lavoro ed ergonomia, 30 (3): 15-21.
  30. Taruscio D. e Cerbo M. (1999). Malattie rare: Concetti generali, problemi specifici e interventi sanitari. Annuale Istituto Superiore della Sanità, 35 (2): 237-244.
  31. Tognetti A. (2004). Le problematiche del caregiver. Giornale di Gerontologia, 52: 505-510.
  32. Valsiner J. (2017). Mente e cultura: La psicologia come scienza dell’uomo (ed. it. a cura di: Marsico G., de Luca Picione R. e Tateo L.). Roma: Carocci.
  33. Zurynski Y., Frith K., Leonard H. and Elliott E. (2008). Rare childhood diseases: How should we respond? Archives of Disease in Childhood, 93 (12): 1071-1074.

  • The Caregiving Experiences of Fathers and Mothers of Children With Rare Diseases in Italy: Challenges and Social Support Perceptions Paola Cardinali, Laura Migliorini, Nadia Rania, in Frontiers in Psychology 1780/2019
    DOI: 10.3389/fpsyg.2019.01780
  • Telling my life: Narratives of coming out in LGB people between certainty/uncertainty and revelation/concealment Roberto Baiocco, Fau Rosati, Altomare Enza Zagaria, Jessica Pistella, in Journal of Gay & Lesbian Mental Health /2023 pp.458
    DOI: 10.1080/19359705.2022.2072035
  • Family caregiving and chronic illness management in schizophrenia: positive and negative aspects of caregiving Man-Man Peng, Zhiying Ma, Mao-Sheng Ran, in BMC Psychology 83/2022
    DOI: 10.1186/s40359-022-00794-9
  • An authentic feeling? Religious experience through Q&A websites Rosa Scardigno, Giuseppe Mininni, in Archive for the Psychology of Religion /2020 pp.211
    DOI: 10.1177/0084672420917451

Altomare Enza Zagaria, Rosa Scardigno, Caterina Colonna, Giuseppe Mininni, Dinamiche discorsive nella ristrutturazione dei ruoli genitoriali in famiglie con malati rari in "PSICOLOGIA DELLA SALUTE" 2/2018, pp 70-90, DOI: 10.3280/PDS2018-002008