Illness Narratives: Psychosocial Issues in Osteogenesis Imperfecta

疾病叙述：成骨不全的心理社会问题

• 批准号: 9407268
• 负责人: Joan Ablon
• 金额: --
• 依托单位: University of California-San Francisco
• 依托单位国家: 美国
• 项目类别: Continuing grant
• 财政年份: 1994
• 资助国家: 美国
• 起止时间: 1994-10-01 至 1999-03-31
• 项目状态: 已结题
• 来源: https://www.nsf.gov/awardsearch/showAward?AWD_ID=9407268&HistoricalAwards=false
• 关键词: Illness; Narratives; Psychosocial; Issues; Osteogenesis

9407268 Ablon This project supports the research of a cultural anthropologist from the University of California studying people and families impacted by a disease called Osteogenesis Imperfecta (OI), also called "brittle bone disease". This is a genetic disease which causes extremely fragile bones. Treatment sometimes involves drilling out the long bones and inserting rods to strengthen the limbs. The researcher will interview in depth a sample of individuals affected by the disease, about their life histories, coping strategies, and self images. The investigator will also observe interactions at OI Foundation meetings. The analysis will describe the existential issues involved in growing up in a body so fragile that bones can be broken simply by swinging one's leg; specifically how one develops a concept of intimacy when even slight physical touching can break bones. The nature of family adaptations to having a member with OI will be described, as well as social stereotypes and psychological consequences of childhood spent undergoing extensive often painful medical procedures. This research is important because it will help us understand the nature of stigma, physical disability, body self-images, chronic illness, and genetic diseases by providing an extensive and careful case study of a population who can not take for granted the physical protection of their own skeletal systems, and who must organize their daily lives around physical fragility. Knowing how sufferers from this extreme condition cope and establish their lives will be useful to everyone who experiences similar disabilities.

9407268 Ablon该项目支持加州大学的一名文化人类学家的研究，研究受成骨不全症（也称为“脆骨病”）影响的人和家庭。这是一种遗传性疾病，会导致骨骼极度脆弱。治疗方法有时包括钻出长骨并插入杆状物以加强四肢。研究人员将深入采访受疾病影响的个体样本，了解他们的生活史、应对策略和自我形象。研究者还将观察OI基金会会议上的互动。分析将描述在一个如此脆弱的身体中成长所涉及的存在问题，这个身体非常脆弱，只要摆动一下腿就可以折断骨头；特别是当轻微的身体接触都可能折断骨头时，一个人是如何产生亲密的概念的。本文将描述家庭对患有成骨不全症的成员的适应性质，以及社会刻板印象和童年经历大量通常是痛苦的医疗程序的心理后果。这项研究很重要，因为它将帮助我们了解耻辱，身体残疾，身体自我形象，慢性疾病和遗传性疾病的本质，为不能理所当然地保护自己骨骼系统的人群提供广泛而仔细的案例研究，他们必须围绕身体脆弱性组织日常生活。了解这种极端情况下的患者是如何应对和建立自己的生活的，将对所有经历类似残疾的人都有帮助。