LIVING WITH SYSTEMIC LUPUS ERYTHEMATOSUS IN MAURITIUS: A NARRATIVE STUDY OF PATIENT EXPERIENCES
Notice bibliographique
Résumé
PV176 / #700 Poster Topic: AS19 - Patient-Reported Outcome Measures Background/Purpose Systemic Lupus Erythematosus (SLE), commonly known as Lupus, is a complex, chronic autoimmune disease characterized by the immune system attacking healthy tissue and organs. The condition presents a broad spectrum of physical, psychological, and social challenges, significantly affecting patients’ quality of life. While advances in clinical research have improved diagnostic and therapeutic strategies, the personal and social dimensions of living with SLE remain underexplored, particularly in regions such as Mauritius where public awareness and systemic support may be limited. This study aimed to investigate the lived experiences of individuals diagnosed with SLE in Mauritius, focusing on their emotional, social, and practical challenges. Methods Employing a narrative methodology, data were collected through in-depth telephone interviews with 60 participants diagnosed with SLE. The interviews were designed to capture rich qualitative data on sociodemographic characteristics and personal reflections using open-ended questions. Participants represented diverse backgrounds, ensuring a comprehensive exploration of experiences. The analysis involved meticulous transcription, iterative reading, and thematic coding. The data were structured around 3 key domains informed by both existing literature and study findings: Pre-Diagnosis: Participants described the prolonged diagnostic journeys marked by misdiagnosis, lack of awareness, and frustration with the healthcare system. Response to Diagnosis: While receiving a diagnosis brought relief and validation of symptoms, it also elicited fear, denial, and anxiety about managing a lifelong condition. Daily Challenges and Coping Mechanisms: Six overarching themes emerged from these domains: Pain and Fatigue: The pervasive physical symptoms disrupted daily routines and social engagement. Changes in Appearance: Visible manifestations such as skin rashes and hair loss impacted participants’ self-esteem and social confidence. Impact on Relationships: Strain on familial, social, and professional relationships was widely reported, with many citing stigma and lack of understanding from others. Emotional Burden: Participants experienced fear of disease progression, frustration with medical uncertainty, and struggles with mental health. Economic Strain: The financial burden of lifelong treatment, frequent medical visits, and reduced work capacity added significant stress. Support Networks: Many participants emphasized the absence of sufficient emotional and practical support from family, employers, and even healthcare providers. Results The findings underscore the multifaceted impact of SLE on patients’ lives, highlighting systemic gaps in awareness, early diagnosis, and support mechanisms. Participants called for enhanced public education about SLE, greater sensitivity from employers and medical professionals, and the establishment of community-based support groups. Conclusions This study contributes to the growing body of research on chronic illness in underrepresented populations, emphasizing the need for tailored interventions in Mauritius and across the African continent. Enhanced public health initiatives and patient-centered care models are crucial to addressing the unmet needs of individuals with SLE, fostering greater inclusion, and improving their quality of life.
Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.
Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,004 | 0,011 |
| Méta-épidémiologie (sens strict) | 0,001 | 0,001 |
| Méta-épidémiologie (sens large) | 0,001 | 0,000 |
| Bibliométrie | 0,001 | 0,002 |
| Études des sciences et des technologies | 0,008 | 0,006 |
| Communication savante | 0,004 | 0,004 |
| Science ouverte | 0,001 | 0,006 |
| Intégrité de la recherche | 0,002 | 0,003 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,003 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».