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“不是一部关于我懒散的电影”:使用协作视觉方法理解青年人群中的医学无法解释的疾病。

'Not a film about my slackness': Making sense of medically unexplained illness in youth using collaborative visual methods.

机构信息

UiT The Arctic University of Norway, Norway.

UiT The Arctic University of Norway, Norway; University Hospital of North Norway, Norway.

出版信息

Health (London). 2020 Jan;24(1):38-58. doi: 10.1177/1363459318785696. Epub 2018 Jul 6.

Abstract

Persistent medically unexplained symptoms have debilitating consequences for adolescents, dramatically altering their social world and future aspirations. Few studies have focused on social and moral aspects of illness experience relevant to adolescents. In this study, the aim is to explore these aspects in depth by focusing on a single case and to address how young people attempt to create social accountability in a search for meaning when facing illness and adversity. The study is based on a view of meaning as dialogically constituted during the research process, which calls for the use of collaborative film methodology and life-mode interviewing. With a dialogic-performative approach to a narrative emplotment of medically unexplained symptoms, we present Peter as intentional and purposive, and as a person who in a reflective process of meaning making claimed his own voice and developed his own strategies of coping with his illness. The analysis brings forward a narrative of suffering, hope and intentionality that is configured by the immediate limited possibilities of agency due to Peter's medical condition. It is, however, configured to an even greater degree by aspirations, that is, to become an accountable person through social experiences and to meet sociocultural and moral expectations of being an adolescent. The study provides insight into relational and existential aspects of meaning making in dealing with contested illness in youth and points to the potential of visual and other experience-near methods for supporting adolescents in their coping attempts and in overcoming communication barriers in everyday life and clinical encounters.

摘要

持续性的医学无法解释的症状对青少年造成了严重的影响,极大地改变了他们的社交世界和未来的抱负。很少有研究关注与青少年有关的疾病体验的社会和道德方面。在这项研究中,我们的目的是通过关注一个单一的案例来深入探讨这些方面,并探讨年轻人在面对疾病和逆境时,如何试图通过寻找意义来创造社会责任感。该研究基于一种意义观,即意义是在研究过程中通过对话构成的,这需要使用合作电影方法和生活模式访谈。通过对医学无法解释的症状进行叙事编排的对话表现方法,我们将彼得描述为有意图和有目的的人,他在一个有意义的反思过程中,主张自己的声音,并发展自己应对疾病的策略。该分析提出了一个关于痛苦、希望和意图的叙事,这些都是由彼得的身体状况导致的直接有限的代理可能性构成的。然而,由于青少年对社会经验和道德期望的渴望,这种叙事在更大程度上得到了构建,即通过社会经验成为一个负责任的人,并满足青少年的社会文化和道德期望。该研究深入了解了青少年在处理有争议的疾病时,与关系和存在相关的意义构建方面,并指出了视觉和其他接近经验的方法在支持青少年应对尝试和克服日常生活和临床接触中的沟通障碍方面的潜力。

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