Electronic Thesis and Dissertation Repository

Thesis Format

Monograph

Degree

Master of Science

Program

Health and Rehabilitation Sciences

Supervisor

Teachman, Gail M.

Abstract

Young people with cerebral palsy (CP) experience chronic pain at rates higher than their non-disabled peers. Despite this recognition, there have been no studies that have addressed how young people with CP’s experiences with chronic pain are represented and studied in the literature, and especially not through a critical disability studies lens. Foucault’s notion of discourse was used to guide critical analysis of studies. This scoping review was guided by the research question: “What is known about the relation between children’s experiences of chronic pain and cerebral palsy in the health and rehabilitation literature?”. Thirty-five studies were included in this review. On average, chronic pain was reported to be of moderate intensity, and interfered with activities of daily living. Young people with CP report chronic pain most commonly in the lower limbs (e.g. feet, legs). Reviewed papers tend to use agreed-upon definitions of “chronic pain” as pain that persists beyond 3 months, and cited interventions to address CP as common sources of pain. Critical analysis of the reviewed texts highlights how experiences of chronic pain were complex and impacted young people’s lives across many areas of everyday life. The findings suggest that individuals have deeply personal experiences and perspectives of chronic pain. Current understandings of childhood disability and chronic pain are still predominantly rooted in biomedical perspectives of health and wellbeing, which can place blame and burden on the individual to deal with their own disability.

Summary for Lay Audience

Cerebral palsy (CP) is the most common childhood disability, and many young people with CP experience chronic pain. Disabled children experience chronic pain at much higher rates than their non-disabled peers, but despite this knowledge, there is limited research that addresses the relationship between childhood disability and chronic pain. In this study, I conducted a scoping review that summarizes how the health and rehabilitation literature conceptualize disability, impairment, and chronic pain. I applied a critical lens to the analysis in order to bring forth and challenge taken-for-granted assumptions about disability and chronic pain. A total of 35 studies were included in this review, which painted a picture of how young people with CP experience chronic pain, and how the current health and rehabilitation field thinks about and addresses these concerns. On average, chronic pain was reported to be of moderate intensity, and interfered with activities of daily living. Reviewed papers tend to use common definitions of “chronic pain” as pain that persists beyond 3 months. Interventions that addressed CP were noted as common sources of pain. Young people with CP report chronic pain most commonly in the lower limbs (e.g. feet, legs). The findings suggest that chronic pain is a deeply personal experience, and that individuals have different understandings towards their pain. Current understandings of childhood disability and chronic pain still heavily stem from biomedical perspectives of health and wellbeing, which can place blame and burden on the individual to deal with their own disability. We must challenge how we think about this topic, and push ourselves and our social systems to consider how social and environmental forces outside of individuals impact their experiences in order to move towards more inclusive and accommodating ways to think about disability and chronic pain for young people with CP.

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