A Qualitative Exploration of Mental Health Needs Among Youth Living with Juvenile Spondyloarthritis: Perspectives of Youth and their Caregivers

Abstract

Objectives To explore the mental health impact and care needs of youth living with Juvenile Spondyloarthritis (JSpA) from the perspective of patients and caregivers. Methods Participants aged 12-18 years with a JSpA diagnosis and their caregivers were recruited in person through the JSpA Clinic at The Hospital for Sick Children using purposive sampling prioritizing those screening positive for anxiety and/or depression. Nine semi-structured interviews were completed with youth living with JSpA (n=4) and their caregivers (n=6). Youth participants included 3 males and 1 female, with a mean age of 17 years. Caregiver participants included 2 fathers and 4 mothers, with 1 interview completed jointly by both parents. Interviews were virtually conducted by a social worker experienced in qualitative mental health research, audio-recorded, transcribed verbatim, de-identified, and imported into Dedoose Software for qualitative analysis. Data was analyzed using Braun and Clarke’s thematic analysis. Results Preliminary analysis identified 5 interconnected themes illustrating the mental health impact in youth with JSpA. (1) Families were the primary source of emotional and practical support, as youth commonly relied on parents for reassurance, encouragement and help coping with symptoms. (2) Youth demonstrated resilience by maintaining a positive outlook, focusing on tasks they could still participate in and showing determination to continue meaningful activities despite pain, fatigue, or fear of treatment procedures. (3) They described varied coping strategies to manage emotional and physical challenges, including engaging in sports and hobbies when able, resting during pain flares or low-energy periods, and seeking comfort through enjoyable activities and family. (4) Symptom burden significantly disrupted school, social life, and recreation, particularly before effective disease management. Although improved control of arthritis enhanced daily functioning for many youths, ongoing pain and fatigue continued to limit participation and require adaptations, demonstrating that challenges persist even with inactive disease. (5) Symptoms and aspects of medical care often trigger distressing emotions, including frustration when symptoms persisted, worry about future flares, and stress or fear associated with procedures such as MRIs and injections. Conclusion Youth with JSpA experience disruptions to daily life and emotional distress, particularly early in their disease course, and some continue to face challenges despite disease management and inactive disease. Although many show resilience and benefit from strong family support and adaptive coping strategies, these findings underscore the need for integrated mental health resources within pediatric rheumatology to better support youth wellbeing and reduce stress on families.