Objective: Despite knowledge that health outcomes vary according to patient characteristics, identity, and geography, including underrepresented populations in arthritis research remains a challenge. We conducted interviews to explore how researchers in arthritis have used equity, diversity, and inclusion (EDI) principles to inform their research.
Methods: Semistructured interviews were conducted with individuals who 1) have experience conducting arthritis research studies, 2) reside in and/or conduct their research in Canada, and 3) speak English or French.
Background: Loneliness, the perception that one's social relationships do not meet the desire for social connection, is a risk factor for poor mental and physical health. Adolescents with chronic pain experience higher rates of peer loneliness which persists over time. Previous studies used a single loneliness measure, limiting our understanding of the nature of their loneliness.
View Article and Find Full Text PDFBackground: Juvenile Idiopathic Arthritis (JIA) is the most common form of childhood inflammatory arthritis. The disease burden of JIA is substantial as patients require specialized medical practitioners for diagnosis and chronic treatments that are both costly and time intensive. Discrepancies in access to care due to health inequities such as socioeconomic status or geographic location may lead to vastly different health outcomes.
View Article and Find Full Text PDFBackground: Juvenile idiopathic arthritis (JIA) is a common pediatric rheumatic condition and is associated with symptoms such as joint pain that can negatively impact health-related quality of life. To effectively manage pain in JIA, young people, their families, and health care providers (HCPs) should be supported to discuss pain management options and make a shared decision. However, pain is often under-recognized, and pain management discussions are not optimal.
View Article and Find Full Text PDFBackground: Authentic researcher-youth partnerships in patient-oriented research (POR) where the research responds to the needs expressed by youth themselves are essential to make research meaningful. While patient-oriented research (POR) is increasingly practiced, few training programs exist in Canada and none, to our knowledge, are tailored for youth with neurodevelopmental disabilities (NDD). Our primary objective was to explore the training needs of youth (ages 18-25) with NDD to enhance their knowledge, confidence, and skills as research partners.
View Article and Find Full Text PDF