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Introduction: Women 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. Approach: In 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. Findings: They 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. Discussion: These 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.
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When living with chronic health conditions or experiences of trauma our lives can become perpetually penciled in. The use of the penciled-in metaphor means to arrange our time tentatively: a date, an appointment, a meeting, seeing a movie, or attending a class. In our technologically-driven world of electronic calendars where everything is entered electronically, the utility of the pencil and hand-written agendas have all but vanished. However, for the purpose of this article, the pencil provides a metaphoric common ground to learn about the totality of the disruption experienced by living with chronic health conditions and their residual trauma. The pencil is touchable, tangible and as a researcher and a person who lives with challenging health concerns, metaphors help me to create an understanding of the chaos of living a life in pain with cancer. This article is a person-centered account of the process of reflexive coping and self-processing of pain by a pain researcher and educator. This article focuses on the metaphor of penciled-in lives to provide a qualitative account of experiences of pain from chronic health issues and the trauma both physical and emotional it causes. This act of reflexivity becomes a personal examination of life. It reveals to me my beliefs, decisions, and practices before and during my hermeneutic journey and how these may have prejudiced my thinking and behaviors.
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INTRODUCTION: Chronic pain (CP) negatively impacts everyday previously taken-for-granted activities resulting in considerable psychosocial stress for the individual. Qualitative research in pediatric CP is limited despite the considerable influence CP has on the process of establishing one's personal identity during these formative years and invites the opportunity to understand how CP affects these young individuals from their perspective. The objective of the study was to inquire into the experiences of female adolescents living with CP in order to enhance our understanding of how CP affects their personal lives. METHOD: We used an interpretive phenomenological approach; two researchers interviewed eight female patients of the Montreal Children's Hospital Chronic Pain Management Clinic (aged 14-17 years) for one session each. RESULTS: Self-reported factors that improved these female adolescents' personal life included having engaging hobbies, accepting the incurability of CP, and envisioning a fulfilling future. DISCUSSION: The findings from this study suggest a need to orient CP-related services around goals and interests that female adolescents living with CP set for themselves in order to improve their perceived quality of life.
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Dor Crônica , Qualidade de Vida , Autoimagem , Adolescente , Instituições de Assistência Ambulatorial , Criança , Feminino , Humanos , Pesquisa Qualitativa , QuebequeRESUMO
This article explores the efficacy of writing and reading poetry as a means to help people living with chronic pain to explore and express their narratives in their own unique way. Throughout our narrative we have interwoven poems from Eugene Feig, one of the authors of this article. His poetry is sent out almost weekly to the members of our pain support group as a method of sharing his own experiences of living with pain, as well as to support and to inspire hope in others. The style of poetry we are presenting is that of a person who is not knowledgeable about poetry in a formal sense but who has an understanding of how it has helped him learn to live with his own chronic pain and suffering. These poems are the author's expression of the meaning of living with chronic pain for over 20 years. This article is a philosophical hermeneutic conversation about pain and poetry.