Adolescents and Young Adults with Systemic Lupus Erythematosus Experience the Disease and the Needs of the Meta Integration

Abstract

Objective: To synthesize qualitative evidence on the illness experiences and needs of adolescents and young adults (AYAs) with systemic lupus erythematosus (SLE) to inform nursing interventions.

Methods: A systematic review (inception-Jan 2024) was conducted across nine databases (CINAHL, Embase, PubMed, Web of Science, Cochrane Library, VIP, Wanfang, CNKI, SinoMed). Qualitative studies exploring AYA SLE experiences were included. Studies were critically appraised using the Joanna Briggs Institute (JBI) Critical Appraisal Checklist for Qualitative Research. Data synthesis followed the JBI meta-aggregation approach.

Results: Four qualitative studies (all JBI-rated moderate quality) met inclusion criteria. Analysis extracted 26 unequivocal findings, grouped them into 6 categories, and synthesized 3 overarching themes: Enduring Cyclical Distress: Persistent pain, fatigue, treatment burden, and emotional turmoil. Disease-Imposed Constraints: Disrupted education/employment, social isolation, and restricted life trajectories. Resilience and Support Needs: Desire for self-management knowledge, positive coping strategies (problem-focused, adaptive emotional, social), and external support for growth.

Conclusion: AYAs with SLE navigate profound physical/psychological suffering and significant life disruptions. They demonstrate potential for resilience but require proactive nursing support. Clinicians must prioritize mental health screening, provide tailored psychosocial interventions, and empower AYAs with self-management skills and accessible education to foster positive coping and improve quality of life.