| Popis: |
This study examines how inflammatory bowel disease sufferers manage the comparatively routine and regimented task of working given the intermittent and unpredictable nature of the condition. It addresses a lack of qualitative research on social aspects of IBD, and is also an empirical study on the body that explores the experience of a specific chronic illness, relating these issues to embodied social regulations that apply more generally. A postal questionnaire was administered to 400 members of a local patient support network, and from these, 21 interviews were conducted. In addition an email-based `virtual focus group' was developed and administered to reflect and harness active computer mediated support networks for IBD sufferers. Most do disclose information about their condition at work, and profess to prefer this over non-disclosure. Reasons for decisions about disclosure relate to the organisation and running of the workplace, how well the condition could be explained, how apparent the condition was, possible impacts on others' perceptions of them, and motivations to `be honest'. Disclosure strategies are identified which are associated with two styles of talking about the condition. `Event' accounts are based on events (e. g. medical treatment) marking out the course of the condition, while `physical' accounts draw primarily on felt experiences of symptoms. Three elements define capacity to work: condition severity, work environment factors and role status factors. Translating this capacity into full and competent worker status depends largely on whether work tasks can be performed without the breaking of social rules relating to the natural functions. The study demonstrates the importance of work in the lives of sufferers, and examines conditions that allow or prevent successful functioning at work. These factors rest primarily with neither medical aspects of the condition, nor social aspects arising from them, but from a complex and fluid dynamic constituted by both. iv |
