Ainscough Eve, Smith Sandra N, Greenwell Kate, Hoare Derek J
School of Medicine, University of Nottingham, United Kingdom.
National Institute for Health Research (NIHR) Nottingham Biomedical Research Centre, Hearing Sciences, Division of Clinical Neuroscience, School of Medicine, University of Nottingham, United Kingdom.
Am J Audiol. 2018 Nov 19;27(3S):503-512. doi: 10.1044/2018_AJA-IMIA3-18-0013.
Tinnitus is the perception of noise without a corresponding external stimulus. Current management typically aims to moderate associated psychosocial stressors and allow sufferers to retain an adequate quality of life. With the increasing recognition of the Internet as a repository for health advice, information, and support, the online support group has become a popular coping strategy for those living with chronic conditions such as tinnitus. Patients find that communicating with each other, providing encouragement, and sharing information in the absence of physical and temporal boundaries are invaluable ways of managing their condition. The purpose of this study was to explore the potential positive and negative consequences of participating in online support groups for tinnitus.
Discussion forum threads were collated from across 4 public online support group websites. All threads were initiated between February and April 2016. Texts from these threads were coded by 3 separate analysts using both inductive and deductive thematic analysis, until data saturation was reached.
Analysis of 75 threads (641 individual posts) found 9 independent themes pertaining to aspects of participation in tinnitus online support groups. The results revealed that using the forums allowed users to exchange knowledge and experiences, express complex emotions, profit from a network of support, and engage in everyday conversation away from the burden of their tinnitus. However, some experiences appeared to be compromised by negative messages, limited communication, and informational issues such as conflicting advice or information overload.
This study represents the 1st research into discussion forums in tinnitus online support groups. A nonintrusive (passive) analysis method was used, whereby messages comprising the dataset were retrieved without direct interaction with the discussion forum. Individuals and the community of tinnitus online support groups are deemed to be at low risk from potential harm in this study. Most tinnitus patients likely benefit from accessing online support groups, for example, they discover they are not alone, and they find new coping strategies. However, for those who are particularly vulnerable or prone to psychological stress, accessing these groups could be detrimental.
耳鸣是在没有相应外部刺激的情况下对噪声的感知。当前的治疗通常旨在缓解相关的心理社会压力源，并使患者保持足够的生活质量。随着互联网作为健康建议、信息和支持的存储库越来越受到认可，在线支持小组已成为耳鸣等慢性病患者常用的应对策略。患者发现，在没有物理和时间限制的情况下相互交流、给予鼓励和分享信息是管理自身病情的宝贵方式。本研究的目的是探讨参与耳鸣在线支持小组可能产生的积极和消极后果。
从4个公共在线支持小组网站收集讨论论坛帖子。所有帖子均在2016年2月至4月期间发起。这些帖子的文本由3名独立分析人员使用归纳和演绎主题分析进行编码，直至达到数据饱和。
对75个帖子（641个单独帖子）的分析发现了9个与参与耳鸣在线支持小组相关的独立主题。结果显示，使用论坛使用户能够交流知识和经验、表达复杂情感、从支持网络中受益，并在远离耳鸣负担的情况下进行日常对话。然而，一些体验似乎受到负面信息、有限沟通以及相互矛盾的建议或信息过载等信息问题的影响。
本研究是对耳鸣在线支持小组讨论论坛的首次研究。采用了一种非侵入性（被动）分析方法，即无需与讨论论坛直接互动即可检索构成数据集的消息。在本研究中，耳鸣在线支持小组的个人和社区被认为受到潜在危害的风险较低。大多数耳鸣患者可能会从访问在线支持小组中受益，例如，他们发现自己并不孤单，并找到了新的应对策略。然而，对于那些特别脆弱或容易产生心理压力的人来说，访问这些小组可能会有害。
