POS1486-HPR BIOGRAPHICAL ELEMENTS TO STRENGTHEN ADHERENCE TO TREATMENT OF PEOPLE WITH LUPUS (2024)

Abstract

Background: The period of uncertainty that someone diagnosed with SLE usually faces influences their ability to communicate their symptoms. This condition makes it difficult to follow treatment. Knowing the emotional-discursive link of people with SLE offers the doctor autobiographical spheres that positively affect adherence to treatment [1].

Objectives: To analyze the expressive capacity and verbal meanings of the person with lupus based on the discursive patterns of language in the doctor-patient dialogic relationship, and the conceptualization of the stages of the disease and pain in their autobiographical narratives.

Methods: Mixed (quantitative-qualitative) longitudinal study. From 2015 to 2023, people with SLE from Mexico, Latin America, the United States, Italy, and Spain were invited to participate. Autoethnography techniques and in-depth interviews were used for the qualitative part and a digital survey for the quantitative part. A critical-linguistic and performative analysis of the discourse was carried out. Through Grounded Theory, conceptual categories were derived that allowed classifying the main statements and their meanings.

Results: The corpus is 352 testimonies from Mexico and other countries from people between 11 and 65 years of age. The sample was observed for 8 continuous years. In the case of long-term interviews, 22 were carried out, and 4 people were selected, who were observed from 2015-2023. The analysis includes a digital survey by 330 people and drawings/self-representations of adolescents with SLE. The analysis allowed us to define the relationship between emotion and discourse throughout the disease, as well as those meanings that influence the social and relational representation of the person suffering from SLE, the discursive forms used to refer to the medication, treatment, and doctors; to pregnancy or the loss of the baby, to work and to life as a couple and family. It was possible to identify a body of metaphors in the speech of the sick person, as well as the uses and meanings of silence. From these samples, observations and interviews, a discursive corpus was concentrated that allowed us to derive a Dictionary of Lupic Language, using the methodology of Grounded Theory and Critical Discourse Analysis.

Conclusion: From the findings of this research, particular words and concepts related to lupus life, attachment, abandonment and understanding of the treatment emerge, as well as a particular vocabulary linked to the disease. Some of the research findings are six narrative plots in the lives of people with SLE, the encounter of archetypes linked to health and illness that influence the identity self-conception of the person with SLE and that contribute to improving the relationship and doctor and patient communication.

REFERENCES: [1] Wodak, Ruth (1995). “Critical Linguistics and Critical Discourse Analysis”, en J. Verschueren, J.-O. Östman y J. Bloomaert (Eds.), Handbook of Pragmatics. Amsterdam: Benjamins.

Acknowledgements: This protocol was part of the Language Scientific Researches of the Postgraduate in Language Sciences, from the Institute of Social Sciences and Humanities of the BUAP. To the doctors: María Cristina Manzano-Munguía, Anabella Barragán Solís, José Marcos Ortega, Elizabeth Buenabad and Raquel Gutiérrez Estupiñán, for reading and accompaniment throughout the research. To all the lupus patients from Mexico and other countries who gave testimony and participated in the research.

Disclosure of Interests: None declared.