Masana Lina
Doctora en Antropología Médica. Investigadora colaboradora, Medical Anthropology Research Centre, Universitat Rovira i Virgili, Tarragona, España.
Salud Colect. 2017 Apr-Jun;13(2):337-352. doi: 10.18294/sc.2017.1237.
Caring for chronic illnesses at all ages represents a growing social and public health problem. Due to insufficient public coverage in Spain, around 80% of long-term care is provided by the sick person's social network. Based in ethnographic research on chronicity carried out between 2009 and 2013 in Spain, this article analyzes the problem of long-term informal care for middle-aged adults with chronic diseases. The results highlight the factors that condition, enhance or limit informal care: the personal, domestic and family situation of the sick person; the cyclical course of chronic diseases; and the social response to illness. The limitations of the informal care model suggest the need to listen to the voices of those affected in order to understand their real needs and adapt official programs oriented towards chronicity accordingly.
照顾各年龄段的慢性病患者是一个日益严重的社会和公共卫生问题。由于西班牙的公共覆盖不足,约80%的长期护理由患者的社交网络提供。基于2009年至2013年在西班牙进行的关于慢性病的人种志研究,本文分析了中年慢性病患者长期非正式护理的问题。研究结果突出了影响、增强或限制非正式护理的因素:患者的个人、家庭和家庭状况;慢性病的周期性病程;以及社会对疾病的反应。非正式护理模式的局限性表明,有必要倾听受影响者的声音,以了解他们的实际需求,并相应地调整针对慢性病的官方项目。