Change in social media use, language seen among parents of children with SJIA before, after diagnosis
Results from this cross-sectional study showed parents used different styles of language, frames of reference and social media websites to express frustrations and issues with the heath care process both before and after their children were diagnosed with systemic juvenile idiopathic arthritis.
A linguistic analysis team manually reviewed 3,979 posts from 108 public social media sites in order to evaluate the posts and language of U.S. parents who had children with a diagnosis of systemic juvenile idiopathic arthritis (SJIA) or who were undiagnosed and suspected of having SJIA.
Findings showed parents during the pre-SJIA diagnosis stage looked for answers and shared various status updates on social media sites. The top three sites used were alternative/lifestyle forums (39%), Facebook (27%) and disease-specific forums (17%). Investigators found during this early stage of diagnosis, the parents’ posts were expressive and showed parents were confident with the both the health care providers and their parental instincts.
According to researchers, during the later prediagnosis phase, social media was still used; however, the parents’ posts showed frustration due to delays in SJIA diagnosis and lack of communication with providers. Investigations found posts involved more objective descriptions of symptoms, less child-centered emotional focus and parents shifted into the role of caregiver. After the SJIA diagnosis was confirmed, parents’ language was less expressive and more straightforward. Parents increased their use of Facebook to make announcements and also increased their use of SJIA sites.
After treatment for SJIA was initiated for their children, parental posts showed a slow return to expressive language and indicated parents understood this was the “new normal,” according to the researchers. ‒ by Monica Jaramillo
Disclosures: Modica reports no relevant financial disclosures. Please see the full study for a list of all other authors’ relevant financial disclosures.