“You Just Have to Keep Going, You Can’t Give Up”: Coping mechanisms among young adults with lupus transferring to adult care

Abstract

Introduction Coping mechanisms and emotional regulation are important contributors to psychosocial health during stressful life events. We sought to describe the coping and emotional responses of persons with childhood-onset systemic lupus erythematosus during the transfer from pediatric to adult healthcare. Methods Semi-structured in-depth one-on-one interviews were conducted with 13 young women aged 18–24 of minority background who had transferred to adult care in a public hospital system. Thematic analysis was used to identify themes motifs from the data. Results Participants described the use of (1) problem-focused coping such as the use of clear communication and self-education, (2) adaptive emotion-focused coping such as cognitive reframing and acceptance, (3) social coping including support-seeking, (4) meaning-making coping including positive religious framing and viewing events as learning opportunities for growth, and (5) disengaged coping including denial and social isolation. A range of emotional responses associated with the transfer were described including fear, anger, loss, and feelings of empowerment and excitement. Conclusion Effective coping and emotional regulation are modifiable factors that may impact transfer-related outcomes and psychosocial health. Addressing coping mechanisms is relevant to the optimized transfer to adult care.