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

Abstract

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.

Attending to Marginalization in The Chronic Pain Literature: A Scoping Review

“…Only six of these 14 studies focusing on chronic pain in women referred to gender with a clear distinction from sex (42.8%), 32 , 35–38 , 40 and three failed to incorporate it at all (21.4%). 39 , 44 , 45 We found this to be a surprising finding. Many of the chronic pain conditions faced by women, like fibromyalgia, for example, are often not effectively managed or understood, which, according to one study, necessitates a “gender-sensitive perspective.” 34 (p235) Attending to gender can allow researchers to better account for those socially constructed aspects of chronic pain that affect women, like (paid and unpaid) work and overperformance, biases, family life and obligations (i.e., caregiving), embodiment, and other struggles and life situations.…”

Explaining the Components of Resilience in Patients with Chronic Pain: A Qualitative Content Analysis

“…[ 23 ] Additionally, Daffin et al . [ 38 ] stated that social support and receiving approval from family members and friends were essential factors affecting resilience against fibromyalgia disease. The findings from a meta-analysis indicate that individuals with low to medium socio-economic statuses face a greater risk of developing CP than those with a high socio-economic status.…”

Maintaining resilience over time: A qualitative exploration of the experiences of living with chronic musculoskeletal pain

“…Although the proportion of qualitative research to explore protective factors of resilience has grown in recent years (Daffin et al., 2021; Rolbiecki et al., 2017; Shaw et al., 2020), the ability of resilience to enhance the long‐term quality of life in patients with chronic diseases is not fully explained (Ye, 2022). There is still a knowledge gap, as few studies have focused on the maintenance of resilience in the long term (De Santis et al., 2013; Geard et al., 2018).…”