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

Publisher: BioMed Central Country of Publication: England NLM ID: 101248897 Publication Model: Electronic Cited Medium: Internet ISSN: 1546-0096 (Electronic) Linking ISSN: 15460096 NLM ISO Abbreviation: Pediatr Rheumatol Online J Subsets: MEDLINE

Publication: 2007- : [London] : BioMed Central
Original Publication: [Chicago, Ill. : University of Chicago, 2003]-

Depression*/etiology ; Depression*/prevention & control ; Fibromyalgia*/diagnosis ; Fibromyalgia*/physiopathology ; Fibromyalgia*/psychology ; Fibromyalgia*/therapy; Chronic Pain/*psychology ; Resilience, Psychological/*physiology ; Transition to Adult Care/*standards; Adaptation, Psychological/physiology ; Adolescent ; Adult ; Female ; Humans ; Longitudinal Studies ; Mental Health ; Needs Assessment ; Patient Education as Topic ; Qualitative Research ; Risk Factors ; Social Isolation/psychology

Background: Juvenile-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.
Methods: The 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.
Results: The 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).
Conclusion: Results 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.
(© 2021. The Author(s).)

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K24 AR056687 United States AR NIAMS NIH HHS; P30 AR076316 United States AR NIAMS NIH HHS; K24AR056687 (PI) and P30 AR076316 (co-I) United States AR NIAMS NIH HHS

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

Date Created: 20210818 Date Completed: 20220110 Latest Revision: 20240404

20240404

PMC8371844

10.1186/s12969-021-00628-9

34404452