Illness Narratives: Psychosocial Issues in Osteogenesis Imperfecta

9407268 ABLON该项目支持加州大学的一位文化人类学家的研究，研究受一种名为成骨不全(OI)的疾病影响的人和家庭，该疾病也被称为“脆骨病”。这是一种遗传病，会导致骨骼极其脆弱。治疗有时包括钻出长骨和插入棒以加强四肢。研究人员将深入采访受疾病影响的个人样本，了解他们的生活史、应对策略和自我形象。调查员还将观察OI基金会会议上的互动情况。这项分析将描述在一个如此脆弱的身体中成长所涉及的生存问题，以至于一个人只要摆动腿就可以骨折；具体地说，当一个人即使是轻微的身体接触也会骨折时，他是如何形成亲密概念的。将描述家庭适应OI成员的性质，以及童年经历广泛而痛苦的医疗程序所造成的社会刻板印象和心理后果。这项研究很重要，因为它将通过提供一个广泛而仔细的案例研究来帮助我们理解耻辱、身体残疾、身体自我形象、慢性病和遗传疾病的性质，这些人不能想当然地认为自己的骨骼系统的身体保护是理所当然的，他们必须围绕身体的脆弱性来组织他们的日常生活。了解这种极端情况的患者如何应对和建立自己的生活，对每个经历类似残疾的人都是有用的。

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.