IntroductionWomen with disabilities are exposed to sexism and ableism, earn less income, and work in exceptionally challenging conditions compared to women without disabilities and men with or without disabilities. Adolescent girls living with scoliosis may begin experiencing this compounding bias during their encounters with healthcare from the moment they start noticing differences in their bodies. Being significantly more likely than boys to progress to a curve angle where painful treatment such as bracing or spinal fusion surgery is required, adolescent girls living with scoliosis are therefore more likely to experience chronic pain. The long-term impact of pain and pain-related stigma includes lower educational attainments, decreased vocational functionality, and social impairments in adults after having experienced chronic pain in adolescence.ApproachIn this article, the authors will explore the effects and mechanisms of gender-specific peer support in disrupting this trajectory to adverse outcomes. Through individual interviews consisting of open-ended questions, the researchers gathered narrative data from Curvy Girls members, a community-based peer support group for girls and young women living with scoliosis. The data was analyzed using an applied philosophical hermeneutics approach, with intersectionality and testimonial injustice as their framework.FindingsThey found that the study participants had their pain narratives reinterpreted by the adults in their lives, including their parents and healthcare practitioners, leading them to question and doubt their own experiences.DiscussionThese negative outcomes were mitigated through the peer support they received and offered from Curvy Girls. Participants reported having gained confidence and a sense of belonging after they joined this group, allowing them to better cope with their condition more effectively in different facets of their lives.
CONTEXT: Scoliosis is an abnormal lateral curvature of the spinal column and affects approximately 1% to 3% of adolescents. The relationship between pain and idiopathic scoliosis has not been well documented and remains unclear in the literature. Curvy Girls is an international peer-run support group that aims to reduce scoliosis's emotional impact through education, mutual support, and self-empowerment. OBJECTIVES: This study endeavors (1) to gain insight into the lived experience of teenage girls living with scoliosis and (2) to understand how the peer support group, Curvy Girls, has impacted their lives. APPROACH: We interviewed sixteen members of Curvy Girls living with scoliosis. The interviews were transcribed verbatim, and then interpreted using applied philosophical hermeneutics. FINDINGS:I. Personal Lens: The narratives of living with undiagnosed pain revealed confusion, solitude, and loneliness. The impact of labeling the pain (i.e., an official diagnosis) led to relief in some cases or irritation in some other cases. II. Healthcare Lens: The stories of negative healthcare experiences and their impact on teenage girls are uncovered. The teenage girls wanted to be included in treatment decisions that may endorse autonomy and independence during adolescence. III. Peer support Lens: Curvy Girls provides a safe environment for these adolescent girls to engage. The power of sharing and communicating helps Curvy Girls members cope and feel a sense of belonging. SIGNIFICANCE: An insight into these teenage girls’ lived experiences allows for a better understanding of living with scoliosis and how a peer support group can help with this journey.
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