Digital Health Literacy in Pediatric Rheumatic Disease: A Qualitative Study Using Interpretive Description

Background/Objectives: Online health information (OHI) is used by adolescents and caregivers to manage pediatric rheumatic diseases (PRDs). Little is known about the lived experiences of this group as they navigate complex, evolving online healthcare information and services. This study aimed to explore the lived experiences and indicators of digital health literacy (DHL) among adolescents with PRD and caregivers of children and adolescents with PRD through their use of OHI to learn about and manage their disease. Methods: Qualitative interviews using Interpretive Description methodology was utilized. Adolescent and caregiver participants were recruited using purposeful sampling from one rheumatology clinic in Saskatchewan, Canada. After completing a pre-interview questionnaire, one-on-one semi-structured telephone interviews were completed, audio-recorded, transcribed verbatim, and analyzed using constant comparative analysis. Results: A total of 10 caregivers and 7 adolescents completed the interviews. Three key themes emerged: (1) OHI offers knowledge without imposing on PRD practitioners. Participants were motivated to use OHI for symptom management, reassurance, and medication administration. (2) Participants had difficulty finding OHI, resulting from their search strategies, desire for answers to complex problems, lack of information for novel biologic medications, the absence of adolescent-focused OHI, and confusion around pediatric to adult disease names. (3) Although aware of misinformation, participants discussed and demonstrated inadequate appraisal of OHI. Conclusions: Participants relied on inappropriate indicators of medical accuracy and misplaced trust in OHI sources, leading to exposure to misinformation. Proactively addressing these concerns, including OHI prescriptions, fostering independent OHI appraisal, and development of age-appropriate OHI, may improve DHL and aid PRD management.