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

Nicole Bitencourt, Ashley Ciosek, Justin Kramer, Elizabeth B Solow, Bonnie Bermas, Tracey Wright, Lorien Nassi, Una Makris

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish (US)
JournalLupus
DOIs
StateAccepted/In press - 2021

Keywords

  • mental health
  • systemic lupus erythematosus
  • Transition to adult

ASJC Scopus subject areas

  • Rheumatology

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