Coulson Neil S, Buchanan Heather, Aubeeluck Aimee
Institute of Work, Health and Organisations, University of Nottingham, UK.
Patient Educ Couns. 2007 Oct;68(2):173-8. doi: 10.1016/j.pec.2007.06.002. Epub 2007 Jul 12.
Huntington's disease (HD) is an inherited disorder, characterized by a progressive degeneration of the brain. Due to the nature of the symptoms, the genetic element of the disease, and the fact that there is no cure, HD patients and those in their support network often experience considerable stress and anxiety. With an expansion in Internet access, individuals affected by HD have new opportunities for information retrieval and social support. The aim of this study is to examine the provision of social support in messages posted to a HD online support group bulletin board.
In total, 1313 messages were content analyzed using a modified version of the social support behavior code developed by [Cutrona CE, Suhr J. Controllability of stressful events and satisfaction with spouse support behaviors. Commun Res 1992;19:154-74].
The analysis indicates that group members most frequently offered informational (56.2%) and emotional support (51.9%) followed by network support (48.4%) with esteem support (21.7%), and tangible assistance (9.8%) least frequently offered.
This study suggests that exchanging informational and emotional support represents a key function of this online group.
Online support groups provide a unique opportunity for health professionals to learn about the experiences and views of individuals affected by HD and explore where and why gaps may exist between evidence-based medicine and consumer behavior and expectations.
亨廷顿舞蹈症(HD)是一种遗传性疾病,其特征为大脑进行性退化。鉴于该疾病症状的性质、遗传因素以及尚无治愈方法这一事实,HD患者及其支持网络中的人员常常承受相当大的压力和焦虑。随着互联网接入的普及,受HD影响的个体有了获取信息和获得社会支持的新机会。本研究的目的是考察在一个HD在线支持小组公告板上发布的信息中所提供的社会支持情况。
使用由[卡特罗纳CE、苏尔J. 应激事件的可控性与对配偶支持行为的满意度。《传播研究》1992年;19:154 - 174]所开发的社会支持行为编码的修改版本,对总共1313条信息进行了内容分析。
分析表明,小组成员最常提供的是信息支持(56.2%)和情感支持(51.9%),其次是网络支持(48.4%),自尊支持(21.7%),而实际援助(9.8%)提供得最少。
本研究表明,交流信息支持和情感支持是这个在线小组的一项关键功能。
在线支持小组为健康专业人员提供了一个独特的机会,使其能够了解受HD影响个体的经历和观点,并探究循证医学与消费者行为及期望之间可能存在差距的地方及原因。