Sclerosi multipla online: un’analisi delle narrazioni dell’esperienza di sclerosi multipla (sm) tra illness e health blog

Titolo Rivista PSICOLOGIA DELLA SALUTE
Autori/Curatori Giorgia Margherita, Anna Gargiulo, Alessia Caffieri
Anno di pubblicazione 2020 Fascicolo 2020/2
Lingua Italiano Numero pagine 20 P. 5-24 Dimensione file 308 KB
DOI 10.3280/PDS2020-002001
Il DOI è il codice a barre della proprietà intellettuale: per saperne di più clicca qui

Qui sotto puoi vedere in anteprima la prima pagina di questo articolo.

Se questo articolo ti interessa, lo puoi acquistare (e scaricare in formato pdf) seguendo le facili indicazioni per acquistare il download credit. Acquista Download Credits per scaricare questo Articolo in formato PDF

Anteprima articolo

FrancoAngeli è membro della Publishers International Linking Association, Inc (PILA)associazione indipendente e non profit per facilitare (attraverso i servizi tecnologici implementati da CrossRef.org) l’accesso degli studiosi ai contenuti digitali nelle pubblicazioni professionali e scientifiche

All’interno del panorama dell’e-health, la letteratura si è rivolta di recente ai blog quali spazi narrativi autobiografici che, in un continuum tra illness e health, rappresentano dei dispositivi narrativi preziosi nell’elaborazione dell’esperienza di malattia. In particolare, la sclerosi multipla (sm), quale malattia degenerativa cronica, spinge ad una continua risignificazione della propria esperienza. Ancora pochi sono oggi gli studi che hanno indagato l’esperienza di sm così come viene narrata all’interno dei blog. L’obiettivo dello studio è stato esplorare i temi presenti nei blog scritti da persone con sclerosi multipla individuando quali differenze esistono nella narrazione dell’esperienza di ma-lattia in base al tempo della comunicazione della diagnosi. Sono stati analizzati 7 blog scritti da donne con sm, che avevano ricevuto la diagnosi in età giovanile e in età adulta. Dall’analisi sono emersi quattro cluster tematici che sono stati proiettati sul piano fattoriale e letti attraverso tre vettori di senso: Il processo di integrazione dell’esperienza di sm nella propria identità; La narrazione online di malattia come strategia di agency; Riorganizzazione della relazione tra sé e altro. Dalla nostra ricerca, il blog si attesta come organizzatore di senso e risorsa in termini di miglioramento del benessere e promozione della salute nell’esperienza di convivenza con la malattia. .;

Keywords:Illness blog; sclerosi multipla; narrazione; e-health; ricerca qualitativa

  1. Angus L., Levitt H. and Hardtke K. (1999). The narrative processes coding system: Research applications and implications for psychotherapy practice. Journal of Clinical Psychology, 55(10): 1255-1270.
  2. Angus L.E. and McLeod J. (eds.) (2004). The handbook of narrative and psychotherapy: Practice, theory and research. Thousand Oaks, California: Sage. DOI: 10.4135/978141297349
  3. Bertini M. (2012). Psicologia della salute [Health psychology]. Milano: Raffaello Cortina Editore.
  4. Bertolotto A. e Caricati E. (2012). Cos’è la sclerosi multipla [What is multiple sclerosis?]. In Bonino S., a cura di, Aspetti psicologici nella sclerosi multipla: dalla diagnosi alla gestione della malattia [Psychological aspects in multiple sclerosis: From diagnosis to disease management]. Milano: Springer.
  5. Bonino S., a cura di (2012). Aspetti psicologici nella sclerosi multipla: dalla diagnosi alla gestione della malattia [Psychological aspects in multiple sclerosis: From diagnosis to disease management]. Milano: Springer.
  6. Boursier V., Manna V., Gioia F., Coppola F. and Venosa N. (2018). Cyber-moms facing motherhood: Holding functions and regressive movements in parenting websites. In Sekalala S. and Niezgoda B.C. (eds.), Global perspectives on health communication in the age of social media (pp. 29-58). Hershey PA: IGI Global.
  7. Bruner J. (1991). The narrative construction of reality. Critical Inquiry, 18(1): 1-21.
  8. Calandri E., Graziano F., Borghi M. and Bonino S. (2018). Depression, positive and negative affect, optimism and health-related quality of life in recently diagnosed multiple sclerosis patients: the role of identity, sense of coherence, and self-efficacy. Journal of Happiness Studies, 19(1): 277-295.
  9. Calandri E., Graziano F., Borghi M. and Bonino S. (2019). Young adults’ adjustment to a recent diagnosis of multiple sclerosis: The role of identity satisfaction and self-efficacy. Disability and Health Journal, 12(1): 72-78.
  10. Caso D., Fabbricatore R., Muti F. e Starace C. (2019). Sessualizzazione e oggettivazione femminile su Instagram: il ruolo delle influencer. Psicologia Sociale, 14(3), 441-463. DOI: 10.1482/9494
  11. Carlino M. and Margherita G. (2016). La maternità in donne con Sclerosi Multipla. Una ricerca esplorativa sulle possibili dimensioni di benessere nella malattia. Psicologia della Salute, 3: 5-25.
  12. Clair V.W.S. (2003). Storymaking and Storytelling: Making Sense of living with Multiple Sclerosis. Journal of Occupational Science, 10: 1, 46-51. DOI: 10.1080/14427591.2003.968651
  13. Charon R. (2006). Narrative Medicine: Honoring the Stories of Illness. Oxford, UK: Oxford University Press.
  14. Conrad P., Bandini J. and Vasquez A. (2016). Illness and the Internet: from private to public experience. Health: 20(1): 22-32. DOI: 10.1177/136345931561194
  15. Corrao F. (1985). Il senso dell’analisi. Teoria e prassi dell’evento [The meaning of the anal-ysis. Theory and praxis of the event]. In Corrao F. (1998). Orme, vol. II. Contributi alla psicoanalisi di gruppo [Tracks, vol II. Contributions to group psychoanalysis] (p. 98-108). Milano: Raffaello Cortina.
  16. Corey-Bloom J. and David R.B. (2010). Clinical Adult Neurology. Chapter 20: demyelinating diseases. 3rd edition (pp. 363-375). New York: Demos Medical Publishing.
  17. Dennison L., Smith E.M., Bradbury K. and Galea I. (2016). How do people with Multiple Sclerosis experience prognostic uncertainty and prognosis communication? A qualitative study. PloS one, 11(7): e0158982.
  18. Denzin N.K. and Lincoln Y.S. (1994). Handbook of qualitative research. London: Sage.
  19. Eng T.R. (2001). The eHealth landscape: a terrain map of emerging information and communication technologies in health and health care. Princeton, NJ: The Robert Wood Johnson Foundation.
  20. Esposito G., Ribeiro A.P., Gonçalves M.M. and Freda M.F. (2017). Mirroring in group counseling: Analyzing narrative innovations. Small Group Research, 48(4): 1-29.  DOI: 10.1177/104649641769714
  21. Freda M.F. (2011). Understanding continuity to recognize discontinuity. Integrative Psychological e Behavioral Science, 45: 335-346.
  22. Frisina P.G., Borod J.C. and Lepore S.J. (2004). A meta-analysis of the effects of written emotional disclosure on the health outcomes of clinical populations. The Journal of Nervous and Mental Disease, 192(9): 629-634.
  23. Frost J., Grose J. and Britten N. (2017). A qualitative investigation of lay perspectives of diagnosis and self-management strategies employed by people with progressive multiple sclerosis. Health, 21(3): 316-336. DOI: 10.1177/136345931667478
  24. Gargiulo A. and Margherita G. (2019). Narratives of Self-harm: the experience of young women through the qualitative analysis of blogs. Mediterranean Journal of Clinical Psychology, 7(1): 1-19. DOI: 10.6092/2282-1619/2019.7.205
  25. Gaperini C. e Ruggieri S. (2012). Evoluzione della malattia [Diesease evolution]. In Bonino S., a cura di, Aspetti psicologici nella sclerosi multipla: Dalla diagnosi alla gestione della malattia [Psychological aspects in multiple sclerosis: From diagnosis to disease management]. Milano: Springer. DOI: 10.1007/978-88-470-2724-
  26. Giordano A. e Pietrolongo E. (2012). Ricevere la diagnosi di sclerosi multipla [Recieving multiple sclerosis diagnosis]. In Bonino S., a cura di, Aspetti psicologici nella sclerosi multipla: Dalla diagnosi alla gestione della malattia [Psychological aspects in multiple sclerosis: From diagnosis to disease management]. Milano: Springer. DOI: 10.1007/978-88-470-2724-
  27. Giovannetti A.M., Brambilla L., Torri Clerici V., Antozzi C., Mantegazza R., Černiauskaitė M. and Confalonieri P. (2016). Difficulties in adjustment to multiple sclerosis: vulnerability and unpredictability of illness in the foreground. Disability and Rehabilitation, 39(9): 897-903. DOI: 10.3109/09638288.2016.117021
  28. Glässel A., Streeck N., Hendriks M., Petry H., Kesselring J. and Biller-Andorno N. (2018). The patient perspective of living with Multiple Sclerosis: the Swiss Database of Patients Narratives [poster]. In “MS Researcher Meeting”, Lucerne, 26 January 2018. Swiss Multiple Sclerosis Society. -- etrived from: https://digitalcollection.zhaw.ch/handle/11475/16487
  29. Glässel A., Streeck N., Mouton Dorey C., Briegel D., Spitale G., Kesselring J. and Biller-Andorno N. (2019). Talking about life with Multiple Sclerosis: a qualitative study of patient experiences. In “21st State of the Art Symposium, Challenges in MS Treatment and Research”, Lucerne, 26 January 2019 (p. 23).
  30. Graffigna G., Barello S. and Triberti S. (2016). Patient engagement: A consumer-centered model to innovate healthcare. Berlin: Walter de Gruyter GmbH & Co KG.
  31. Greenberg L.S. and Paivio S.C. (2003). Working with emotions in psychotherapy. New York: Guilford Press.
  32. Gurak L.J. and Antonijevic S. (2008). The psychology of blogging: You, me, and everyone in between. American Behavioral Scientist, 52 (1): 60-68. DOI: 10.1177/000276420832134
  33. Heilferty C.M. (2009). Toward a theory of online communication in illness: concept analysis of illness blogs. Journal of Advanced Nursing, 65(7): 1539-1547.
  34. Hermans H.J. (2003). The construction and reconstruction of a dialogical self. Journal of Constructivist Psychology, 16: 89-130. DOI: 10.1080/1072053039011790
  35. Lagu T., Kaufman E.J., Asch D.A. and Armstrong K. (2008). Content of weblogs written by health professionals. Journal of General Internal Medicine, 23: 1642-1646.
  36. Lancia F. (2004). Strumenti per l’analisi dei testi. Introduzione all’uso di T-LAB [Tools for text analysis]. Milano: Franco Angeli.
  37. Lancia F. (2008). Word co-occurrence and similarity in meaning. Some methodological issues. In Salvatore S. and Valsiner J. (eds.), Mind as Infinite Dimensionality (pp. 1-39). Roma: Carlo Amore.
  38. Lancia F. (2012). T-Lab 8.0: Manuale d’uso.
  39. Lavorgna L., Brigo F., Moccia M., Leocani L., Lanzillo R., Clerico M. and Tedeschi G. (2018). e-Health and multiple sclerosis: An update. Multiple Sclerosis Journal, 24: 1657-1664. DOI: 10.1177/1352458518799629
  40. Lavorgna L., Lanzillo R., Morra V.B., Abbadessa G., Tedeschi G. and Bonavita S. (2017). Social Media and Multiple Sclerosis in the Posttruth Age. Interactive Journal of Medical Research, 6(2): e18.
  41. Lepore S.J. and Smyth J.M. (2002). The writing cure: How expressive writing promotes health and emotional well-being. Washington, DC, US: American Psychological Association. DOI: 10.1037/10451-00
  42. Magnezi R., Grosberg D., Novikov I., Ziv A., Shani M. and Freedman L.S. (2015). Characteristics of patients seeking health information online via social health networks versus general Internet sites: a comparative study. Informatics for Health and Social Care, 40(2): 125-138. DOI: 10.3109/17538157.2013.87914
  43. Margherita G., Boursier V., Gargiulo A. e Nicolò G. (2017). Sognare e narrare la maternità: un’analisi tematica dei sogni delle gestanti. Psicologia Clinica dello Sviluppo, 21(2): 237-255.  DOI: 10.1449/8753
  44. Margherita G. and Gargiulo A. (2018). A comparison between pro-anorexia and non-suicidal self-injury blogs: From symptom-based identity to sharing of emotions, Psychodynamic Practice, 24(4): 346-363. DOI: 10.1080/14753634.2018.153532
  45. Margherita G., Gargiulo A. and Martino M.L. (2015). Dream narration in healthy and at-risk pregnancy. Dreaming, 25(2): 88-102.
  46. Martino M.L., Gargiulo A., Lemmo D. and Margherita G. (2019). Cancer blog narratives: the experience of under-fifty women with breast cancer during different times after diagnosis. The Qualitative Report, 24(1): 154-173. -- Retrieved from: https://nsuworks.nova.edu/tqr/vol15/iss1/1
  47. Migliorini L., Cardinali P. and Rania N. (2019). How could self-determination theory be useful for facing health innovation challenges? Frontiers in psychology, 10, 1870.
  48. Neimeyer R.A. (2002). Editorial: Traumatic loss and the reconstruction of meaning. Journal of Palliative Medicine, 5: 935–942. DOI: 10.1089/1096621026049917
  49. Neimeyer R.A. (2006). Complicated grief and the quest for meaning: A constructivist contribution. Journal of Death and Dying, 52, 37–52. DOI: 10.2190/EQL1-LN3V-KNYR-18T
  50. Nesby L. and Salamonsen A. (2016). Youth blogging and serious illness. Medical humanities, 42(1): 46-51.
  51. Nettleton S., O’Malley L. and Duffey P. (2004). Enigmatic illness: Narratives of patients who live with medically unexplained symptoms. Social Theory & Health 2: 47-66.
  52. Orgad S. (2005). The transformative potential of online communication: The case of breast cancer patients’ Internet spaces. Feminist Media Studies, 5(2): 141-161. DOI: 10.1080/1468077050011198
  53. Orton S.M., Herrera B.M., Yee I.M., Valdar W., Ramagopalan S.V., Sadovinick D. and Cebers G.C. (2006). Sex ratio of multiple sclerosis in Canada: a longitudinal study. Lancet Neurol, 5(11): 932-936. DOI: 10.1016/S1474-4422(06)70581-
  54. Pakenham K.I. (2007). Making sense of multiple sclerosis. Rehabilitation Psychology, 52(4): 380. DOI: 10.1037/0090-5550.52.4.38
  55. Parrello S. e Giacco N. (2014). Aggiungere vita ai giorni: la Distrofia muscolare di Duchenne nella narrazione delle madri. [Add life to the days: Duchenne muscular dystrophy in the mother’s narrative]. Psicologia della Salute, (1): 113-124, DOI: 10.3280/PDS2014-00100
  56. Pennebaker J.W. and Beall S.K. (1986). Confronting a traumatic event: Toward an understanding of inhibition and disease. J Abnorm Psychol., 95: 274-281.
  57. Pennebaker J.W. and Seagal J.D. (1999). Forming a story: The health benefits of narrative. Journal of Clinical Psychology, 55(10): 1243-1254.
  58. Pennebaker J.W., Kiecolt-Glasser J. and Glasser R. (1988). Disclosure of traumas and immune function: Health implications for psychotherapy. J. Consult. Clin. Psychol., 56: 239-245.
  59. Pennebaker J.W., Mayne T.J. and Francis M.E. (1997). Linguistic predictors of adaptive bereavement. J. Pers. Soc. Psychol., 72: 863-871. DOI: 10.1037//0022-3514.72.4.863
  60. Pratt W., Unruh K., Civan A. and Skeels M.M. (2006). Personal health information management. Communications of the ACM, 49(1): 51-55. DOI: 10.1145/1107458.110749
  61. Rastier F., Cavazza M. and Abeillé A. (2002). Semantics for descriptions: From linguistics tocomputer science, 138. Standford, CA: Standford Univ. Center for the Study.
  62. Reinert M. (1995). I mondi lessicali di un corpus di 304 racconti di incubi attraverso il metodo Alceste [Lexical worlds of a corpus of 304 stories of nightmares through the Alceste method]. In: Cipriani R. e Bolasco S., a cura di, Ricerca qualitativa e computer [Qualitative research and computer] (pp. 203-223). Milano: Franco Angeli.
  63. Riessman C.K. (2003). Performing identities in illness narrative: Masculinity and multiple sclerosis. Qualitative Research, 3(1): 5-33. DOI: 10.1177/14687941030030010
  64. Ressler P.K., Bradshaw Y.S., Gualtieri L. and Chui K.K.H. (2012). Communicating the experience of chronic pain e illness through blogging. Journal of Medical Internet Research, 14(5): e143.
  65. Robinson, I. (1990). Personal narratives, social careers and medical courses: analysing life trajectories in autobiographies of people with multiple sclerosis. Social Science e Medicine, 30(11): 1173-1186. 10.1016/0277-9536(90)90257-S
  66. Rollero C. (2019). Quando il caregiving è maschile: uno studio qualitativo sui partner di donne affette da sclerosi multipla [When caregiving is male: a qualitative study on the partners of women with multiple sclerosis]. Psicologia della Salute, (1): 85-97. DOI: 10.3280/PDS2019-00100
  67. Roscio M., Falautano M. e Possa M.F. (2004). Il sostegno psicologico. Le tappe del percorso riabilitativo. [Psychological support. The stages of the rehabilitation process]. In Ghezzi A. e Comi G., a cura di, Il management della persona con sclerosi multipla [The management of the person with multiple sclerosis] (pp. 145-199). Torino: Elleboro.
  68. Salvatore S. e Freda M.F. (2011). Affect, unconscious and sensemaking. A psychodynamic, semiotic and dialogic model. New Ideas in Psychology, 29: 119-135.
  69. Schneider M. and Young N. (2010). ‘So this is my new life’: A qualitative examination of women living with multiple sclerosis and the coping strategies they use when accessing physical activity. Disability Studies Quarterly 30(3/4): 3.
  70. Stepleman L.M., Floyd R.M., Valvano-Kelley A., Penwell-Waines L., Wonn S., Crethers D., Rhan R. and Smith S. (2017). Developing a measure to assess identity reconstruction in patients with multiple sclerosis. Rehabilitation psychology, 62(2), 165.
  71. Suler J.R. (2002). Identity management in cyberspace. Journal of Applied Psychoanalytic Studies, 4(4), 455-459.
  72. Tichon J.G. and Shapiro M. (2003). The process of sharing social support in cyberspace. Cyberpsychol Behav, 6: 161-70. DOI: 10.1089/10949310332164035
  73. Townsend A., Wyke S. and Hunt K. (2006) Self-managing and managing self: Practical and moral dilemmas in accounts of living with chronic illness. Chronic Illness 2: 185-194. DOI: 10.1177/1742395306002003130
  74. Turkle S. (1995). Life on the screen: Identity in the age of the Internet. New York: Simon e Schuster.
  75. Valsiner J. and Rosa A. (2007). The Cambridge Handbook of Sociocultural Psychology. New York: Cambridge University Press.

  • The Psychological Health and Professional Well-being of Operators Working with Forced Migrants in Italy: A Cross-sectional Epidemiological Study Francesca Tessitore, Alessia Caffieri, Claudia Giordano, Giovanna Celia, Giorgia Margherita, in Current Psychiatry Research and Reviews /2024 pp.270
    DOI: 10.2174/0126660822272705231121111221

Giorgia Margherita, Anna Gargiulo, Alessia Caffieri, Sclerosi multipla online: un’analisi delle narrazioni dell’esperienza di sclerosi multipla (sm) tra illness e health blog in "PSICOLOGIA DELLA SALUTE" 2/2020, pp 5-24, DOI: 10.3280/PDS2020-002001