Pain, a major health problem in the United States, is a highly complex and subjective experience that is poorly understood by many medical, psychological, and rehabilitation practitioners. In this paper I use a qualitative research methodology, autoethnography, to present a personal narrative about my experience of chronic pain. In this research I am both the research participant and the researcher. I begin with my personal narrative. I then problematize conceptions about chronic pain and discuss them from the point of view of my own narrative and from stories and ethnographies in the literature. Finally I reflect on how occupational therapists can more effectively work with persons with chronic pain.
Disability and Health (ICF), the aim of this study was to identify effective strategies for managing urinary and bowel complications resulting from spina bifida.METHOD Charts of 210 children between 4-and 13-years-old with spina bifida were reviewed to quantify medical interventions and continence status. Standardized quality of life (QOL) questionnaires were administered to a subset of participants; child and parent interviews were carried out to examine the experience of living with bowel and bladder incontinence. Practitioners were also interviewed to understand their perspectives of intervention effectiveness.RESULTS Chart review indicated less than half of children were continent for bowel and bladder. More variability existed in bowel continence programs, and practitioners considered bowel continence more difficult to achieve than bladder continence. No significant associations were found between continence status and QOL measures. Interviews, however, reflected how managing continence at home and school more broadly affects QOL. Among practitioners, some focused primarily on optimizing physical health while others focused on activity and participation.INTERPRETATION While continence is a goal, programs used to achieve this are individualized and outcomes may be affected by differential treatment effects, environmental factors, and/or stigma experienced by children.Spina bifida results from an incomplete neural tube closure during embryonic development. A direct link exists between the location of the lesion and the resulting impairments associated with spina bifida: sensory, neurological, orthopedic, bowel and bladder, and cognitive. More than any other factor, bowel and bladder impairments can result in profound social stigma and decreased self-esteem, as well as serious health complications, including death.
In this paper, I present a viewpoint about prevention and spina bifida that is not usually expressed within the occupational therapy literature. Using an autoethnographic account, I convey my experiences as a person with impairments from spina bifida in order to problematize current preventive efforts undertaken to eradicate this birth defect. This self-reflexive account connects my personal experiences to historical and medical views about spina bifida. The messages inherent in preventive efforts are discussed from a disability rights perspective. Occupational therapists are challenged to examine their attitudes toward disability, act as advocates in their practice, and, in a more informed manner, support or contest policy initiatives.
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