“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.

Experiences and Perspectives of Children and Young People Living with Childhood-Onset Systemic Lupus Erythematosus—An Integrative Review

“…Social support systems, including peers, family, and cSLE support groups, were found to be necessary and important for coping with cSLE by CYP in this review. Organized events, such as camps for CYP with cSLE, were beneficial in providing social support through shared experiences and helping young people to normalize their life [ 81 , 82 ]. Camps for CYP offer opportunities for peer acceptance and social inclusion, and these benefits have been similarly described in studies in other long-term conditions such as diabetes [ 83 ], celiac disease [ 84 ], bleeding disorders [ 85 ], and epilepsy [ 86 ].…”

“…Despite these positive findings, CYP living with cSLE require individualized, multi-dimensional interventions and support to develop coping strategies to enhance their ability to respond to the multiple challenges imposed by cSLE. This includes the skills needed to effectively transition from CYP services to adult care [ 82 , 87 , 88 ].…”