
Identifying Facilitators of and Barriers to Digital Health Literacy in Pediatric Rheumatic Disease Patients and their Families
Innovation
This research aims to gain more understanding about what factors influence the ability for children and teenagers with rheumatic disease and their caregivers to access digital health technologies. Digital health technologies, such as websites, mobile apps, and video links are becoming valuable for patients and families affected by having a childhood rheumatic disease. Digital resources improve access to information that helps to understand, monitor, and manage disease. However, to benefit from digital health technologies, children and families require adequate digital health literacy (DHL). DHL is a person’s ability to access, evaluate, and apply health information obtained using electronic digital resources. Children and families affected by having a rheumatic disease who have high DHL are more informed about their disease, understand and comply with treatments better, and have more favorable outcomes. However, not all children and families have equal opportunities to achieve desirable DHL levels. This project is the first to comprehensively consider what factors facilitate DHL and what barriers might exists to prevent DHL in children who have a rheumatic disease and their families.
Discovery
This research aims to identify facilitators and barriers to DHL in children rheumatic diseases and their families. To discover the factors that influence DHL we will search the world literature for relevant information, interview adolescents with rheumatic diseases and their caregivers, and analyze a large Canadian database of children with arthritis to determine if DHL is associated with different disease outcomes.
Engagement
The success of this project would not be possible without the participation of children and caregivers. Adolescent patients with a rheumatic diseases and caregivers of children with rheumatic diseases have generously contributed time and shared their experiences and opinions by participating in interviews and completing questionnaires. Pediatric rheumatology colleagues in Saskatchewan and throughout Canada are essential collaborators. We are grateful for funding support for this project from the Canadian Initiative for Outcomes in Rheumatology cAre (CIORA), the funding arm of the Canadian Rheumatology Association.
Action
The results of this research is expected to provide new information that will help develop action plans to ensure that children and teens with rheumatic diseases and their families can access and use new digital health technologies in ways that will improve care and disease outcomes.