A qualitative study of risk and resilience in young adult women with a history of juvenile-onset fibromyalgia

Pediatric Rheumatology

Caitlin Murray¹  Morgan Daffin²  Mary K. Lynch-Milder³  Robert C. Gibler⁴  Carly M. Green⁵  Susmita Kashikar-Zuck⁶ 

[1] Center for Child Health, Behavior & Development, Seattle Children’s Research Institute, Seattle, USA;Department of Pediatrics, Division of Child & Adolescent Psychiatry and Psychology, Norton Children’s Medical Group, University of Louisville School of Medicine, 200 East Chestnut Street, 40202, Louisville, KY, USA;Department of Psychiatry, Indiana University School of Medicine, Indianapolis, USA;Department of Psychology, University of Cincinnati, Cincinnati, USA;Division of Behavioral Medicine & Clinical Psychology, Cincinnati Children’s Hospital Medical Center, Cincinnati, USA;Division of Behavioral Medicine & Clinical Psychology, Cincinnati Children’s Hospital Medical Center, Cincinnati, USA;Division of Behavioral Medicine & Clinical Psychology, Cincinnati Children’s Hospital Medical Center, Cincinnati, USA;Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, USA;

关键词: Juvenile-onset fibromyalgia;    Fibromyalgia;    Resilience factors;    Risk factors;    Young adults;    Chronic pain;   

DOI  :  10.1186/s12969-021-00628-9

来源: Springer

【 摘 要 】

BackgroundJuvenile-onset Fibromyalgia (JFM) is a chronic pain condition characterized by widespread musculoskeletal pain, fatigue, sleep difficulties, mood concerns, and other associated symptoms. Although diagnosed in childhood, JFM often persists into adulthood can result in continued physical, social, and psychological impairment. The purpose of this qualitative study was to identify themes of risk and resilience for long-term outcomes among young adults diagnosed with JFM in childhood.MethodsThe sample included 13 young adults (ages 26–34) who had been diagnosed with JFM in adolescence. Focus groups were used to elicit qualitative information about living with JFM and perceived challenges and buffering factors impacting their adjustment.ResultsThe majority of participants (80%, N = 12) continued to meet criteria for fibromyalgia (FM). An iterative, thematic analysis revealed themes of resilience (e.g., greater acceptance, re-setting expectations, active coping, addressing mental health) and risk (e.g., lack of information, stigma, isolation, negative healthcare experiences).ConclusionResults suggest the need for longer follow-up of youth with JFM as they transition to adulthood with multidisciplinary care and more attention to education about JFM and associated symptoms such as fatigue, as well as ongoing support for coping and mental health needs. A holistic approach to care during the transition years could be beneficial to minimize impact of JFM on long-term functioning.

【 授权许可】

CC BY