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在滑坡上的生活:囊性纤维化成年患者的健康认知

Life on a slippery slope: perceptions of health in adults with cystic fibrosis.

作者信息

Lowton Karen, Gabe Jonathan

机构信息

Department of Palliative Care and Policy, King's College London, London.

出版信息

Sociol Health Illn. 2003 May;25(4):289-319. doi: 10.1111/1467-9566.00348.

Abstract

This paper focuses on how adults with cystic fibrosis (CF) attending a specialist CF centre in the UK perceive their health. In common with many other genetic diseases, CF is traditionally conceptualised as a fatal childhood disease, yet the average survival age for those with CF has been steadily rising over the past half century. Thus it is now predicted that those born in 1990 will live on average for 40 years. To date, however, most sociological work has focused on children or adolescents affected by CF rather than on adults between the ages of 18 and 40, the focus of the study reported here. The paper shows that these adults' varying perceptions of health are related to the effects of CF, its treatment, and the context in which adults are placed. Four concepts of health are identified (health as 'normal', controllable, distressing and a release) along with certain styles, ways of coping and related strategies. Through these analytic distinctions the paper aims to make a contribution to the sociological understanding of lay concepts of health in adults with childhood or genetic disease.

摘要

本文聚焦于英国一家专业囊性纤维化(CF)中心的成年CF患者如何看待自己的健康状况。与许多其他遗传疾病一样,CF传统上被视为一种致命的儿童疾病,但在过去半个世纪里,CF患者的平均存活年龄一直在稳步上升。因此,现在预计1990年出生的CF患者平均能活到40岁。然而,迄今为止,大多数社会学研究都集中在受CF影响的儿童或青少年身上,而非本文所报告研究的重点——18至40岁的成年人。本文表明,这些成年人对健康的不同看法与CF的影响、其治疗方式以及成年人所处的环境有关。文中确定了四种健康概念(健康即“正常”、可控、令人苦恼和一种解脱)以及某些应对方式和相关策略。通过这些分析性区分,本文旨在为社会学理解患有儿童期疾病或遗传疾病的成年人的健康观念做出贡献。

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