PDF(1447 KB)
Social media as the “Intermediate Area”: An investigation on the Internet experience of rare disease patients
JIANG Rui, WANG Jiali
Chinese Journal of Journalism & Communication ›› 2023, Vol. 45 ›› Issue (2) : 107-126.
PDF(1447 KB)
PDF(1447 KB)
Social media as the “Intermediate Area”: An investigation on the Internet experience of rare disease patients
From the perspective of “Intermediate Area” of psychoanalytic theory, this paper adopted the in-depth interview method and non-participatory observation, and discussed the significance and internal logic of social media in life experience through rare disease patients. The study found that social media is an “Intermediate Area” between internal feelings and external reality, which encourages patients to fully accept their own experience in order to complete self-determination and development. In addition, the experience of “Intermediate Area” is realized through “voluntary separation” and “internal and external negotiation” at different levels of individuals, and accompanied by symbolic cultural life and the expansion of individual experience by illusion, it reflects and maintains the personal value and dignity of patients.
Rare disease patients / social media / psychoanalytic theory / “Intermediate Area”
| [1] |
陈懿玮, 李杨阳(2021). 中国罕见病综合报告.2021年2月28日.
|
| [2] |
Elsa Oliveira Dias(2016/2020). 《温尼科特成熟过程理论》(赵丞智,凌笋昂,郝伟杰,魏晨曦译). 北京: 中国轻工业出版社.
|
| [3] |
崔光辉(2021年9月9日). 探寻精神分析回返大地的理论进路. 《中国社会科学报》,A5.
|
| [4] |
阿克塞尔·霍耐特(2010/2021). 《我们中的我:承认理论研究》(张曦,孙逸凡译). 南京: 译林出版社.
|
| [5] |
大卫·勒布雷东(2008/2010). 《人类身体史和现代性》(王圆圆译). 上海: 上海文艺出版社.
|
| [6] |
广州日报客户端(2021). 《我国罕见病患者总数超2000万人“罕见病”中心助力找药》. 检索于https://baijiahao.baidu.com/s?id=1693030118120915416&wfr=spider&for=pc.
|
| [7] |
科奈尔·桑德沃斯(2009). 内在的粉丝——粉都和精神分析.载陶东风(主编),《粉丝文化读本》(第210-231页). 北京: 北京大学出版社.
|
| [8] |
李耘耕(2018). 从规训到流动:数字媒介网络的权力实践模式转变. 《学术研究》, 2018年3期,59-66.
|
| [9] |
刘海龙(2017). 像爱护爱豆一样爱国:新媒体与“粉丝民族主义”的诞生. 《现代传播》, 2017年4期,27-36.
|
| [10] |
刘晓阳(2019). 《罕见病群体网络社群的使用及其对心理健康的影响研究——以“渐冻人”群体为例》.厦门大学硕士论文.厦门.
|
| [11] |
刘瑛, 孙阳(2011). 弱势群体网络虚拟社区的社会支持研究——以乙肝论坛“肝胆相照”为例. 《新闻与传播研究》,(2),76-88.
|
| [12] |
欧阳灿灿(2018). 身体如何成为存在的根基——梅洛-庞蒂论身体与外在事物的关系. 《外国文学》, (3),105-114.
|
| [13] |
史梁, 陈新平(2020). 交流、支持与身份认同——罕见病在线社区“青年帕金森之家”的话语实践. 北京论坛•健康传播分论坛丨医疗、人文、媒介——“健康中国”与健康传播2020国际学术研讨会,2020年11月7日.
|
| [14] |
斯蒂芬·海纳曼(2009). “我将在你身边”——粉丝、幻想和埃尔维斯的形象.载陶东风(主编),《粉丝文化读本》(第147-170页). 北京: 北京大学出版社.
|
| [15] |
涂炯, 钟就娣(2017). 食管癌患者的身体、自我与身份. 《广西民族大学学报(哲学社会科学版)》,(1),36-45.
|
| [16] |
王凤丽, 司琪(2022年7月20日).互联网社交重塑社会生活空间. 《中国社会科学报》,A5.
|
| [17] |
郗浩丽(2008). 儿童心理发展中的“过渡客体”. 《教育学术月刊》,(5),6-8.
|
| [18] |
郗浩丽(2017). 温尼科特过渡客体理论的发展线索. 《南京师大学报(社会科学版)》,(5),97-104.
|
| [19] |
简·艾布拉姆(1996/2022). 《温尼科特的语言》(赵丞智,王晶,魏晨曦,郝伟杰译). 重庆: 重庆大学出版社.
|
| [20] |
罗杰·西尔弗斯通(1994/2004). 《电视与日常生活》(陶庆梅译). 南京: 江苏人民出版社.
|
| [21] |
唐诺·温尼考特(2009). 《游戏与现实》(朱恩伶译).台北:心灵工坊文化事业股份有限公司.
|
| [22] |
朱以诚, 张抒扬(2022). 我国罕见病诊疗和研究平台建立现状和回顾. 《罕见病研究》,(2),93-96.
|
| [23] |
|
| [24] |
Acne vulgaris (AV) may affect external appearance and significantly deteriorate the quality of life of patients. Therefore, patients make various inquiries about their disease and seek treatment options.To investigate the social media usage habits of patients with AV concerning their diseases, and their recommendations for dermatologists related to social media use.A total of 1,609 patients with AV completed the survey prepared by the authors and the Cardiff Acne Disability Index questionnaire. The Food and Drug Administration severity scores and clinical information of the patients were noted by their physicians.Of the 1,489 patients who stated that they used social media, 46.31% regularly and 28.77% sometimes referred to these sources to make inquiries about AV. Social media usage for AV was statistically significantly higher in women, participants with short-term and severe disease, those with a moderate income level, and those using topical treatment and cosmetics. They mostly used Google (67%), Instagram (54%), and YouTube (49%). While 76% of the participants stated that they did not share what they saw on the internet with their doctor. Of the respondents, 18.5% were trying to contact their dermatologists through the internet, and 69.73% would prefer experts such as dermatologists to post AV-related content.Our study shows that patients frequently resort to social media to seek information about AV. In the changing digital world order, it is observed that there is a need for dermatologists to use social media more actively to share accurate information about AV.This article is protected by copyright. All rights reserved.
|
| [25] |
|
| [26] |
|
| [27] |
|
| [28] |
Social support is defined as information leading the subject to believe that he is cared for and loved, esteemed, and a member of a network of mutual obligations. The evidence that supportive interactions among people are protective against the health consequences of life stress is reviewed. It appears that social support can protect people in crisis from a wide variety of pathological states: from low birth weight to death, from arthritis through tuberculosis to depression, alcoholism, and the social breakdown syndrome. Furthermore, social support may reduce the amount of medication required, accelerate recovery, and facilitate compliance with prescribed medical regimens.
|
| [29] |
|
| [30] |
|
| [31] |
|
| [32] |
|
| [33] |
|
| [34] |
|
| [35] |
|
| [36] |
|
| [37] |
Social media as an effective source of information and support among parents and other caregivers of children with cancer has not been explored. The purpose of this cross-sectional study was to describe caregivers' reasons for using social media, social media sites used, and predictors of social media usage. This study sample included 215 caregivers (96% parents) of children with cancer receiving cancer-related care at a tertiary children's hospital in the Intermountain West. Most of caregivers (74%) reported using social media in relation to their child's cancer and reported using social media to provide and receive support and information about their child's diagnosis or treatment. Our findings suggest that social media could be a delivery platform for future interventions seeking to meet the informational and emotional needs of caregivers of children with cancer. An awareness of how parents and caregivers of children receiving cancer-related treatment use social media can help nurses understand their ongoing informational and emotional needs. Nurses can also support parents and caregivers in selecting reputable sources of support that are accessible via social media.
|
| [38] |
|
| [39] |
|
| [40] |
This paper investigates mobile phone use as a medium of inter‐generational communication. Research on teenage mobile phone use has tended to focus on its peer group functionality. In this paper, the mobile phone is examined as a transitional object in parent–teen interrelationships. Specifically, drawing on ethnographic work conducted in Israel among teenagers between 2000 and 2006, the paper focuses on mobile telephones as physical objects that can connect people and mediate relationships. It is shown that, for parents and their teenage children, the mobile phone is important more for the possibility of communication and less for the text or voice conversation it actually carries. Analysis focuses also on the role of the mobile phone in enabling inter‐generational distance and intimacy, attending to the complicated ways in which the mobile phone is employed by parents and their teenage children. It is argued that the analysis of mobile phone practices needs to take directly into account the specific cultural contexts of production and consumption, as culture, technology and family mutually shape one another.
|
| [41] |
|
| [42] |
|
| [43] |
|
| [44] |
|
| [45] |
|
| [46] |
|
| [47] |
In this paper, we investigate whether social support exchanged in an online healthcare community benefits patients’ mental health. We propose a nonhomogeneous Partially Observed Markov Decision Process (POMDP) model to examine the latent health outcomes for online health community members. The transition between different health states is modeled as a probability function that incorporates different forms of social support that patients exchange via discussion board posts. We find that patients benefit from learning from others and that their participation in the online community helps them to improve their health and to better engage in their disease self-management process. Our results also reveal differences in the influence of various forms of social support exchanged on the evolution of patients’ health conditions. We find evidence that informational support is the most prevalent type in the online healthcare community. Nevertheless, emotional support plays the most significant role in helping patients move to a healthier state. Overall, the influence of social support is found to vary depending on patients’ health conditions. Finally, we demonstrate that our proposed POMDP model can provide accurate predictions for patients’ health states and can be used to recover missing or unavailable information on patients’ health conditions.
|
1. 温尼科特的代表性著作《Playing and Reality》出现过三种“中间地带”的英文表述:intermediate territory/area/zone,其中area的使用次数最多,本文英文关键词采用此表述。这三种表述除了都有物理空间的区域和地带之意,territory还有(经验或知识的)领域的意思,area也有“领域、范围、方面”之意;此外,作者还用过potential space(潜在空间),third area(第三领域)来表达相似意思。为避免阅读和理解上的交叉混淆,本文统一写为“中间地带”;在引用其他中文译文时,沿用原文献表述。
2. 关于Donald W. Winnicott的姓名译法:大陆地区习惯译为“温尼科特”,台湾地区译为“温尼考特”,文中引用台湾文献的部分写作“温尼考特”,其余中文译法均为“温尼科特”。
3. 海南大学人文学院传播学专业2020级本科生张婉涛对访谈工作亦有贡献。
4. 账户昵称信息均已经过化名处理。
5. 病龄为实际年龄与发现患病时年龄的差值。由于罕见病的症状表现不一,有的患者在很小的时候就发现了病情,有的则是年长后才发现,病龄的长短会直接影响患者的生活态度与疾病体验。
6. 鉴于罕见病界定与病名规范表述的复杂性,本研究综合参考了《关于公布第一批罕见病名录的通知》(国卫医发[2018]10号)、不同国家地区对罕见病的界定(欧盟地区定义“罕见病”的标准是患病率<1/2000,台湾地区的标准是<1/10000,日本定义患者<5万人的疾病是“罕见病”,中华医学会医学遗传学分会在2010年首次定义中国的罕见病为“患病率”<1/500000或新生儿发病率<1/10000的遗传性疾病),以及术语在线网站(www.termonline.cn,全国科学技术名词审定委员会主办,2016年5月上线)。
7. 王璇(1994-2021),神经纤维瘤患者。2021年1月26日接受本研究访谈,3月7日因病去世,谨以此文纪念真诚温暖的她。
/
| 〈 |
|
〉 |