Purpose Information and education are epistemic goods; if an individual lacks them, their full development as a person may be affected. This research aims to describe issues related to epistemic injustice (lack of information and/or education) in systemic lupus erythematosus and to interpret them regarding their educational needs for self-management.
Methods We conducted a qualitative assessment of comments organically posted by people with lupus, physicians, and relatives on the Facebook page Hablemos de Lupus (Let’s Talk about Lupus), which is part of a comprehensive online program in Spanish to educate Latin-Americans about lupus. In this page, live video chats (LVC) are launched monthly, they include a short overview of the topic by the expert, followed by the audience-expert chat. LVC were led by healthcare professionals, patients or family leaders with expertise or experience in lupus. We intentionally selected 7 LVC: 1. Patient-physician relationship, 2. Why is it necessary to group patients together?, 3. Lupus: the patient and his/her social environment, 4. Self-management in lupus, 5. Lupus and quality of life, 6. Remission in lupus from the patient‘s perspective, and 7. Patient organizations: opportunities and challenges. LVC and comments triggered (or posted in reaction to) were transcribed verbatim and analyzed using an hermeneutic approach. Comments containing only greetings or emoticons were excluded. This research was approved by the Ethics Committee of Emory University (Atlanta, USA) with registration number IRB00111590.
Results The 7 LVC lasted overall 443 minutes and 16 seconds, and generated 1.749 comments of which 758 were excluded due to lack of content. Among 991 comments analyzed, nearly 70% indicated epistemic injustice (e.g., ’no one understands our disease’; ‘We need more awareness because we are seen as dramatic [people] and doctors see it [lupus] as [something] common, and we need [them] to be more sensitive’. The most frequent type of epistemic injustice was hermeneutic (e.g., ‘Being a patient with this invisible disease, it’s very difficult to be understood’; ‘It is very very difficult first when we don’t know what is wrong with us and then the diagnosis and the process of acceptance, and then all that is required in daily life’). The core themes that emerged from the LVC and comments emcompassed: disease knowledge, support network, coping strategies, healthcare system, and self-management (Figure 1).
Conclusions Understanding these aspects is necessary to address the educational needs of people with lupus. A health-promoting curriculum aiming to support lupus patients’ self-management should consider the critical role that the knowledge plays to move forward into effective personal and collective actions. Epistemic justice is also a primary principle to conduct health policies that seek the full integration of these patients into the society.
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