The Lived Employment Experience of Young Adults with Childhood and Adult Onset Systemic Lupus Erythematosus: A Multicentre Canadian Qualitative Study

Objective: This study examined the lived employment experiences of young adults with childhood and adult-onset systemic lupus erythematosus (SLE).

Methods: Participants were recruited from three Canadian lupus clinics and asked to complete, semi-structured, qualitative video/phone interviews. Interviews were transcribed verbatim and analyzed using thematic analysis. Participants were recruited until consolidated thematic saturation.

Results: Twenty-one participants (median age: 27 years): 14 woman, 5 men and 2 gender nonconforming individuals were included. Thirty-eight percent had childhood-onset SLE. Seventy-one percent of the participants were employed, 19% were looking for work and 10% were not working and not looking for work. Qualitative analysis revealed two themes: 1. "Maintaining control internally and externally": participants described how the ability to exercise control over their symptoms (internally) and their job (externally) allowed them to gain and maintain employment. 2. "Tough choices: Health, then work and everything else": participants described challenges in maintaining a balance between their health, other social responsibilities, and work, due to their SLE-related limitations. Within this theme, participants also offered advice on how others could best manage the conflicting demands on their time and energy, which was summarized in a sub-theme called "Recommendations for others - 'take care of yourself first'".

Conclusions: When faced with the competing demands of their health (managing their SLE) and work, many young adults with SLE choose to prioritize their health, sacrificing their work or social responsibilities. Efforts aimed at promoting the employment success of young adults with SLE should inform individuals of these challenges, and offer potential coping strategies.