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Creating a 'Health Talk Online' web-based resource on family experiences of disorders of consciousness

创建一个关于意识障碍家庭经历的“在线健康讲座”网络资源

基本信息

批准号：
ES/K00560X/1
负责人：
Jenny Kitzinger
金额：
$ 3.05万
依托单位：
CARDIFF UNIVERSITY
依托单位国家：
英国
项目类别：
Research Grant
财政年份：
2013
资助国家：
英国
起止时间：
2013 至无数据
项目状态：
已结题

来源：
https://gtr.ukri.org/projects?ref=ES%2FK00560X%2F1
关键词：
Creating Health Talk Online web

项目摘要

Developments in medical technologies and procedures are associated with a rapid rise in the number of people surviving in prolonged disorders of consciousness (e.g. 'vegetative' and 'minimally conscious' states). However there has been relatively little research, and few resources, to help people to deal with the issues that arise when they have a loved one insuch a condition. Our original research demonstrated the need for high-quality internet resources to support these families and to serve as a resource for relevant professionals. The proposed project builds on our original study of 30 people with a relative in a disordered state of consciousness who were interviewed about their experience of the care and treatment of their loved one (e.g. a partner, parent, offspring or sibling). Although the focus of this original research was 'decision making' these interviews (which lasted an average of 4-5 hours) form a rich data-base in which families talk about a wide variety of issues from the shock of the original injury and the process through which a diagnosis was reached over time, through to the long term issues facing families (emotional and practical) and the complex choices in which they may be involved (e.g. where their loved one should be cared for, how to manage their affairs, what specific medical treatments should be pursued or forgone).The original interview study was conducted using qualitative methods based on rigorous social science research methodology and all interviews were conducted by one or other of the senior researchers submitting this bid. These data will be combined with interviews with an additional 8 interviews (videoed where possible) and the entire corpus will be re-analysed for the purpose of writing 20-25 summaries on the issues that are most important to these families in order to produce a resource to be published on 'HealthTalkOnline' http://www.healthtalkonline.org/) - a widely used site (5 million hits /100,000 unique visitors per month) certified under the Department of Health's Information Standard scheme and winner of severalawards for the innovative form, accuracy and quality of the information it provides (e.g. British Medical Association Patient Information Awards, Health Care IT Effectiveness Awards and Social Innovation awards - see www.healthtalkonline.org/Overview/Awards_healthtalkonline).The development of the new HTO section of the website about disorders of consciousness will follow the good practice model already established through over 70 HTO projects (see attached list of HTO modules). The topic summaries will be drafted by the senior researchers who collected the original data under the guidance of Sue Ziebland, and drafts will be discussed and reviewed with her, and by a member of an expert advisory panel. The panel will include family members/carers, social scientists and health and social care professionals. The summaries of key issues will be illustrated with clips from the interviews in video, audio or text format and the researcher will identify, in consultation with the advisory panel, a list of respected national and local organisations and websites that provide other kinds of information and support, for inclusion on the site. Prior to publication of the material on the HTO website by project partners DIPEx we will coordinate two focus groups to ensure that the new site reflects the experiences of families and that we have correctly identified the issues that are important to a broad range of people. This piloting will include participants being invited to explore the draft website and complete a brief questionnaire. After publication the site will be promoted and developed for use by a wide variety of users/stakeholders.

医疗技术和程序的发展与长期意识障碍（例如“植物人”和“最低限度意识”状态）中存活的人数迅速增加有关。然而，相对而言，很少有研究和资源来帮助人们处理当他们所爱的人处于这种状况时出现的问题。我们最初的研究表明，需要高质量的互联网资源来支持这些家庭，并作为相关专业人员的资源。拟议的项目建立在我们对30名处于意识紊乱状态的亲属进行的原始研究的基础上，这些亲属接受了关于他们照顾和治疗亲人（例如伴侣，父母，后代或兄弟姐妹）的经验的采访。虽然这项原始研究的重点是“决策”，（平均持续4-5小时）形成了一个丰富的数据库，其中家庭讨论了各种各样的问题，从最初受伤的震惊到随着时间的推移做出诊断的过程，家庭面临的长期问题（情感和实际）以及他们可能参与的复杂选择（例如，他们所爱的人应该在哪里得到照顾，如何管理他们的事务，应采取或放弃哪些具体的治疗方法）。最初的访问研究是以严谨的社会科学研究方法为基础，采用质性研究方法进行，所有访问均由一个或其他的高级研究员提交了这个投标。这些数据将与另外8个访谈的访谈相结合（如有可能，将录像），并将重新分析整个语料库，以便就这些家庭最重要的问题编写20-25个摘要，以便制作一个资源，在“健康讲座在线”上发表http：//www.healthtalkonline.org/）-一个广泛使用的网站（每月500万次点击/100，000独立访问者），获得卫生署信息标准计划认证，并因创新形式赢家多项奖项，所提供信息的准确性和质量（例如，英国医学协会患者信息奖、保健信息技术有效性奖和社会创新奖----见www.healthtalkonline.org/Overview/Awards_healthtalkonline）。主题摘要将由在Sue Ziebland的指导下收集原始数据的高级研究人员起草，草稿将与她以及专家咨询小组的一名成员进行讨论和审查。该小组将包括家庭成员/护理人员、社会科学家以及卫生和社会护理专业人员。将以视频、音频或文本格式的访谈剪辑来说明关键问题的摘要，研究人员将与咨询小组协商，确定一份提供其他类型信息和支持的受人尊敬的国家和地方组织及网站的名单，供列入网站。在项目合作伙伴DIPEX在HTO网站上发布材料之前，我们将协调两个焦点小组，以确保新网站反映家庭的经验，并确保我们正确识别对广泛人群重要的问题。这一试点将包括邀请与会者探索网站草稿并填写一份简短的调查问卷。网站公布后，将加以推广和发展，供广大用户/利益攸关方使用。