Understanding Contributors of Resilience in Youth with Childhood-Onset Systemic Lupus Erythematosus Through a Socio-ecological Lens: A Mixed Methods Study.

Objective: This study aimed to identify themes contributing to resilience in childhood-onset systemic lupus erythematosus (cSLE), distinguish between profiles resilience, and examine how they relate to underlying themes and patient characteristics.

Methods: We conducted a mixed-methods study of twenty-one cSLE patients aged 11-19 years at a Canadian tertiary care centre from October 2022-July 2024. We purposively sampled patients belonging to ethnically and culturally diverse backgrounds to complete semi-structured interviews. We qualitatively defined features of resilience and distinguished profiles of low vs high socio-ecological resilience according to patient median on The Child and Youth Resilience Measure-Revised (CYRM-R). Profiles were then related to socio-demographic (e.g., adverse childhood experiences, health literacy),disease features (e,g., age at diagnosis, disease duration), and patient-reported outcomes (e.g., anxiety and depressive symptoms).

Results: Factors contributing to resilience were grouped into five themes: familial environment, social support beyond family, health services and information, life with SLE, and sense of self. Cultural influences were reported to impact several themes. Patients with high resilience (scores above 73 on CYRM-R) reported more facilitators in each thematic area, whereas patients with low resilience experienced more challenges in these areas, in addition to greater number of ACEs, lower health literacy, earlier age at diagnosis, longer disease duration and poorer mental health.

Conclusion: Findings support a dynamic model of resilience, shaped by a combination of socio-demographic, disease, personal, cultural and social factors. This improved understanding of resilience may help direct comprehensive care for cSLE youth and guide targeted interventions for youth at risk of poor outcomes.