"De bèsties a instal·lacions elèctriques defectuoses": imatges metafòriques d'esclerosi múltiple descrita per dones
##plugins.themes.bootstrap3.article.sidebar##
##plugins.themes.bootstrap3.article.main##
Resum
L'esclerosi múltiple (EM) és una malaltia que afecta el cervell i la medul·la espinal, en la qual el sistema immunològic ataca la mielina que protegeix les fibres nervioses, provocant danys permanents que deriven en diversos tipus de discapacitats. Com a malaltia (fins a la data) incurable, l'experiència del/de la pacient és fonamental per afrontar els nombrosos símptomes, especialment en la forma en què es comunica, no només als metges, sinó també a la societat en general. En els últims anys, l'EM, que fa un segle semblava afectar tant dones com homes, ha mostrat una prevalença creixent en la proporció entre dones i homes, tant en cohorts petites (Kotzamani et al., 2012; Krökki et al. 2011), com a nivell mundial (Sellner et al., 2011). Davant aquesta tendència, l'estudi de l'EM ha començat a incloure un enfocament de gènere, centrant-se en els potencials factors explicatius, però també en les circumstàncies específiques que afecten les dones (Jobin et al., 2010). En el nostre article, a partir d' una mostra extreta de testimonis en línia, es realitzarà una anàlisi de les diverses imatges metafòriques utilitzades per les dones per explicar els seus símptomes a metges, familiars i a la societat en general. Seguint la classificació tradicional de Lakoff i Johnson (1980: 14), explorarem els marcs utilitzats, que poden conduir a experiències positives o negatives de la malaltia i poden tenir un potencial empoderant quan les pacients «lluiten» contra l'EM en el marc general del maneig de la seua malaltia.
Descàrregues
##plugins.themes.bootstrap3.article.details##
Aquesta obra està sota una llicència internacional Creative Commons Reconeixement-CompartirIgual 4.0.
S'utilitza una llicència de drets d'autor CREATIVE COMMONS d'accés obert. Aquells autors les obres dels quals siguin publicades per aquesta revista, accepten els termes següents:
- a. Els autors conservaran els seus drets d'autor i garantiran a la revista el dret a publicar primer la seva obra, que estarà simultàniament subjecta a la Llicència de Reconeixement Creative Commons CC BY SA que permet a tercers compartir l'obra sempre que s'indiqui el seu autor i la seva primera publicació.
- b. Els autors podran adoptar altres contractes de llicència no exclusius per a la distribució de la versió publicada de l'obra (per exemple, dipositar-la en un arxiu telemàtic institucional o publicar-la en un volum monogràfic) sempre que s'indiqui la publicació inicial en aquesta revista.
- Els autors poden -i es recomana- difondre la seva obra a través d'Internet (per exemple, en arxius telemàtics institucionals o a la seva pàgina web) abans i durant el procés de presentació, la qual cosa pot produir intercanvis interessants i augmentar les citacions de l'obra publicada.
##plugins.generic.funding.fundingData##
-
Ministerio de Ciencia e Innovación
##plugins.generic.funding.funderGrants## TED2021-130040B-C22 -
Agencia Estatal de Investigación
##plugins.generic.funding.funderGrants## TED2021-130040B-C22
Referències
Bass, Christopher and Derick T. Wade (2018). Malingering and Factitious Disorder. Practical Neurology, 19(2), 1-10. https://doi.org/10.1136/practneurol-2018-001950
Bock, Sheila. (2013). Staying Positive: Women’s illness narratives and the stigmatized vernacular. Health, Culture and Society, 5(1), 150-166. https://doi.org/10.5195/hcs.2013.125
De Judicibus, Margaret A. and Marita P. McCabe (2007). The impact of the financial costs of multiple sclerosis on quality of life. International Journal of Behavioral Medicine, 14, 3-11. https://doi.org/10.1007/BF02999222
Demjén, Zsófia and Elena Semino (2016). Using metaphor in healthcare: physical health. In Elena Semino and Zsófia Demjén (eds). The Routledge Handbook of Metaphor and Language (pp. 385-399). Routledge.
Dijkers, Marcel (2010). Comparing Quantification of Pain Severity by Verbal Rating and Numeric Rating Scales. The Journal of Spinal Cord Medicine, 33(3), 232-242. https://doi.org/10.1080/10790268.2010.11689700
Duval, M. Louise (1984). Psychosocial metaphors of physical distress among MS patients. Social Science & Medicine, 19(6), 635-638. https://doi.org/10.1016/0277-9536(84)90230-2
Dyck, Isabel and Lyn Jongbloed (2000). Women with Multiple Sclerosis and employment issues: A focus on social and institutional environments. Canadian Journal of Occupational Therapy, 337-346. https://doi.org/10.1177/000841740006700506
Ebers, George C. (2008). Environmental factors and multiple sclerosis. The Lancet Neurology, 7(3), 268-277. https://doi.org/10.1016/S1474-4422(08)70042-5
Green, Rivka, Gary Cutter, G., Michael Friendly and Ilya Kister. (2017). Which symptoms contribute the most to patients’ perception of health in multiple sclerosis? Multiple Sclerosis Journal - Experimental, Translational and Clinical, 3(3), 2055217317728301. https://doi.org/10.1177/20552173177283
Hanne, Michael (2015). Diagnosis and Metaphor. Perspectives in Biology and Medicine, 58(1), 35–52. https://doi.org/10.1353/pbm.2015.0010
Haubrick, Kayla K., Emily A. Gadbois, Susan E. Campbell, Jessica Young, Tingting Zhang, Syed A. Rizvi, Theresa I. Shireman and Renee E. Shield (2021). The Lived Experiences of Adults with Multiple Sclerosis. Rhode Island Medical Journal, 104(6), 38-42.
Heesen, Christoph., Köpke, S., Richter, T., & Kasper, J. (2007). Shared decision making and self-management in multiple sclerosis–a consequence of evidence. Journal of Neurology, 254, 116-121. https://doi.org/10.1007/s00415-007-2028-z
Jobin, Céline, Catherine Larochelle, Hélène Parpal, Patricia K. Coyle and Pierre Duquette (2010). Gender issues in multiple sclerosis: an update. Women’s Health, 6(6), 797-820. https://doi.org/10.2217/WHE.10.69
Kaviani, H., & Hamedi, R. (2011). A quantitative/qualitative study on metaphors used by Persian depressed patients. Archives of Psychiatry and Psychotherapy, 4: 5-13.
Kotzamani, D., Panou, T., Mastorodemos, V., Tzagournissakis, M., Nikolakaki, H., Spanaki, C., Plaitakis, A. (2012). Rising incidence of multiple sclerosis in females associated with urbanization. Neurology, 78(22), 1728-1735. https://doi.org/10.1212/WNL.0b013e31825830a9
Kratz, Anna L., Dawn M. Ehde, Marisol A. Hanley, Mark P. Jensen, Travis L. Osborne and George H. Kraft (2016). Cross-Sectional Examination of the Associations Between Symptoms, Community Integration, and Mental Health in Multiple Sclerosis. Archives of Physical Medicine and Rehabilitation, 97(3), 386–394. https://doi.org/10.1016/j.apmr.2015.10.093
Krökki, Olga, Risto Bloigu, Mauri Reunanen, Anne Remes (2011). Increasing incidence of multiple sclerosis in women in Northern Finland. Multiple Sclerosis Journal, 17(2), 133-138. https://doi.org/10.1177/1352458510384012
Lace, John W., Zachary C. Merz and Rachel Galloto (2021). Exploring the Structured Inventory of Malingered Symptomatology in Patients with Multiple Sclerosis. Psychological Injury and Law, 14, 291-303. https://doi.org/10.1007/s12207-021-09424-y
Lakoff, George and Mark Johnson (1980). Metaphors We Live By. University of Chicago Press.
Manouchehrinia, Ali, Radu Tanasescu, Christopher R. Tench and Cris S. Constantinescu (2016). Mortality in multiple sclerosis: meta-analysis of standardised mortality ratios. Journal of Neurology, Neurosurgery & Psychiatry, 87, 324-331. https://doi.org/10.1136/jnnp-2015-310361
Miller, Colleen. M. (1997). The lived experience of relapsing multiple sclerosis: A phenomenological study. Journal of Neuroscience Nursing, 29(5), 291-304.
Munday, Imogene, Ian Kneebone, Kris Rogers and Toby Newton-John (2022). The language of pain: is there a relationship between metaphor use and adjustment to chronic pain? Pain Medicine, 23(12), 2073-2084. https://doi.org/10.1093/pm/pnaa467
Newman-Toker, David E., Ernest Moy, Ernest Valente, Rosanna Coffey and Anika L. (2014). Missed diagnosis of stroke in the emergency department: a cross-sectional analysis of a large population-based sample. Diagnosis, 1(2): 155-166.
https://doi.org/10.1515/dx-2013-0038
Parker, Le-Sharn, Gogem Topcu, Danielle De Boos and Roshan das Nair (2021). The notion of «invisibility» in people’s experiences of the symptoms of multiple sclerosis: a systematic meta-synthesis. Disability and rehabilitation, 43(23), 3276-3290. https://doi.org/10.1080/09638288.2020.1741698
Parton, Chloe, Jane M. Ussher, Simone Natoli and Janette Perz (2018). Being a mother with multiple sclerosis: negotiating cultural ideals of mother and child. Feminism & Psychology, 28(2), 212-230. https://doi.org/10.1177/095935351773
Patel, Rajesh, Tammy Chang, S. Ryan Greysen and Vineet Chopra (2015). Social media use in chronic disease: a systematic review and novel taxonomy. The American Journal of Medicine, 128(12), 1335-1350. https://doi.org/10.1016/
j.amjmed.2015.06.015
Pragglejaz Group (2007). MIP: A method for identifying metaphorically used words in discourse. Metaphor and Symbol, 22(1), 1-39. https://doi.org/10.1080/10926480709336752
Radley, Alan. (2002). The role of metaphor in adjustment to chronic illness. In Radley, A. (ed.) Worlds of illness. Biographical and Cultural Perspectives on Health and Disease (pp. 121-135). Routledge.
Schäfer, Gráinne, Kenneth M. Prkachin, Kimberley A. Kaseweter, Amanda C. Williams (2016). Health care providers’ judgments in chronic pain: the influence of gender and trustworthiness. Pain, 157(8), 1618-1625. https://doi.org/10.1097/j.pain.0000000000000536
Semino, Elena (2008). Metaphor in Discourse. Cambridge University Press.
Semino, Elena, Demjén, Zsófia, Jane Demmen, Veronika Koller, Sheila Payne, Andrew, and Paul Rayson (2015). The online use of Violence and Journey metaphors by patients with cancer, as compared with health professionals: a mixed methods study. BMJ Supportive & Palliative Care, 1-7. https://doi.org/10.1136/bmjspcare-2014-000785
Sellner, Johann, Jörg Kraus, Amer Awad, Ron Milo, Bernhard Hemmer and Olaf Stüve (2011). The increasing incidence and prevalence of female multiple sclerosis–A critical analysis of potential environmental factors. Autoimmunity Reviews, 10(8), 495–502. https://doi.org/10.1016/j.autrev.2011.02.006
Springer-Sullivan, Cassie (2005). The resurrection of female hysteria in present-day ERISA disability law. Berkeley Journal of Gender, Law and Justice, 20, 67-74.
Sontag, Susan (1979). Illness as metaphor. Allen Lane.
Sontag, Susan (1988). AIDS and its metaphors. Penguin.
Stewart, Mike and Sarah-Jane Ryan (2019). Do Metaphors Have Therapeutic Value for People in Pain? A Systematic Review. Pain and Rehabilitation-the Journal of Physiotherapy Pain Association, 48, 10-23.
Street Jr, Richard L., Gregory Makoul, Neeraj K. Arora and Ronald M. Epstein, R. M. (2009). How does communication heal? Pathways linking clinician–patient communication to health outcomes. Patient Education and Counseling, 74(3), 295-301. https://doi.org/10.1016/j.pec.2008.11.015
Thompson, Jessica and Denise Blake (2020). Women’s experiences of medical miss-diagnosis: How does gender matter in healthcare settings? Women’s Studies Journal 34(1/2): 22-36.
Thompson, Charee M., Manuel D. Pulido, Sara Babu, Nicole Zenzola and Chungyi Chiu. (2022). Communication between persons with multiple sclerosis and their health care providers: A scoping review. Patient Education and Counseling, 105(12), 3341-3368. https://doi.org/10.1016/j.pec.2022.07.013
Yorkston, Kathryn M., Estelle R. Klasner and Kristen M. Swanson (2001). Communication in Context: A Qualitative Study of the Experiences of Individuals with Multiple Sclerosis. American Journal of Speech-Language Pathology, 10(2), 126-137. https://doi.org/10.1044/1058-0360(2001/013)
Wallin, Mitchell T., Willam J. Culpepper, Jonathan D. Campbell, Lorene M. Nelson, Annette Langer-Gould, Ruth Ann, Gary R. Cutter, Wendy E. Kaye, Laurie Wagner, Helen Tremlett, Stephen L. Buka, Piyameth Dilokthornsakul, Barbara Topol, Lie H. Chen and Nicholas G. LaRocca (2019). The prevalence of MS in the United States: a population-based estimate using health claims data. Neurology, 92(10), e1029-e1040. https://doi.org/10.1212/WNL.0000000000007035
Wendell, Susan (1996). The Rejected Body. Feminist Philosophical Reflections on Disability. Routledge.
World Health Organization (WHO) (2023): Multiple Sclerosis. https://www.who.int/news-room/fact-sheets/detail/multiple-sclerosis. Accessed on January 10, 2024.