BREATHE-INDIA: BREATHlEssness in INDIA. Development of a Breathlessness Beliefs and Behaviour education intervention for use in the community-setting

1.摘要和技术摘要、目的和目标以及关键词--请在一份微软Word文档(或同等文档)中提供以下信息：摘要以一种可以向一般受众公布的方式，用简单的术语描述研究。这将向公众开放，申请者有责任确保内容适合出版。不超过4000个字符，包括空格和回车。持续性呼吸困难是指尽管对潜在疾病进行了最好的治疗，但仍会持续呼吸困难。在印度，癌症和呼吸道疾病、环境因素(例如糟糕的空气质量)和不健康的生活方式选择(例如吸烟)等持续呼吸困难的原因很常见。这意味着持续的呼吸困难很可能成为印度的一个普遍问题，影响到许多人及其家人。持续上气不接下气的人通常会尽量避免身体和社交活动，他们担心这会使他们更加上气不接下气。然而，减少体力活动实际上会使呼吸困难变得更严重，因为人们失去了健康和力量，这两者都有助于从呼吸困难的发作中恢复。持续上气不接下气的人往往会因为呼吸困难的加重和停止从事他们喜欢的社交活动而降低生活质量。家庭成员经常要照顾气喘吁吁的人。这可能会造成困难，因为家庭成员经常不确定如何帮助他们，也不得不停止做像去上班或做他们喜欢的事情，因为他们正在照顾患有持续呼吸困难的人。其结果是，家庭收入可能会减少，家庭可能会开始感到社会孤立，健康状况可能会降低。在较富裕的国家，低成本的自我管理呼吸困难干预措施是有帮助的，可以在社区环境中提供(例如，呼吸技巧、风扇、生活方式方法、有节奏的体力活动)。这些课程增进幸福感，几乎不需要医学知识，而且可以教给外行员工、亲属或临床支持人员。然而，大多数干预措施都是在较富裕的国家开发的，由于不同的文化信仰，我们不知道在其他环境中有帮助的干预措施是否对持续呼吸困难的印度人来说是可接受和有帮助的。我们希望了解开发一种干预措施来帮助印度持续呼吸困难的人。为了做到这一点，我们将首先审查来自其他国家--特别是亚洲国家--的证据，以找出已经有哪些干预措施来帮助患有持续性呼吸困难的人。特别是，我们想知道在哪里(例如社区团体)以及如何提供呼吸困难干预(例如由训练有素的志愿者)，以及干预包括什么(例如教育、呼吸技巧)。一旦我们确定了相关信息，我们由临床医生和政策专家组成的团队将发展对“什么有效，对谁有效，在哪里有效”的理解。我们将把这一信息呈现给印度的几个不同的团体，他们对如何在印度支持持续呼吸困难的人感兴趣(例如，患者、医疗保健专业人员、社区代表)。我们将共同设计一项干预措施，旨在改善印度持续呼吸困难患者的护理方式。一旦开发出来，我们希望在未来我们可以测试这种干预措施是否可以以合理的成本提供，并在改善印度各地持续气喘病患者及其家人的生活质量方面是可接受和有效的。

1. Summary and Technical Summary, Aims and Objectives and Keywords - please provide the following information in one MS Word document (or equivalent): Summary Describe the research in simple terms in a way that could be publicised to a general audience. This will be made publicly available and Applicants are responsible for ensuring that the content is suitable for publication. No more than, 4000 characters including spaces and returns. Persistent breathlessness is breathlessness which persists despite best treatment of the underlying disease. Causes of persistent breathlessness like cancer and respiratory diseases, environmental factors (e.g. poor air quality) and unhealthy lifestyle choices (e.g. smoking) are common in India. This means that persistent breathlessness is likely to be a widespread problem in India, affecting many people and their families. People with persistent breathlessness commonly try to avoid physical and social activities which they are worried will make them more breathlessness. However, reduced physical activity in fact makes breathlessness worse as people lose fitness and strength, both of which help recovery from breathlessness episodes. People who suffer from persistent breathlessness often have reduced quality of life due to worsening breathlessness and because they stop doing social activities which they enjoy. Family members often have to look after the person with persistent breathlessness. This can cause difficulties as family members are often unsure of how to help and also have to stop doing things like going to work, or doing things they enjoy because they are looking after the person with persistent breathlessness. As a result, household income can be reduced, families can start to feel socially isolated and health can be reduced. In richer countries, low-cost self-management breathlessness interventions are helpful and can be delivered in community-settings (e.g., breathing techniques, fans, lifestyle approaches, paced physical activity). These promote well-being, need little medical knowledge and are teachable to lay workers, relatives or clinical support staff. However, most interventions have been developed in richer countries and due to different cultural beliefs we do not know whether interventions which are helpful in other settings might be acceptable and helpful to people with persistent breathlessness India. We want to understand to develop an intervention to help people with persistent breathlessness in India. To do this, we will begin by reviewing evidence from other countries - particularly countries in Asia - to find out what interventions are already to help people with persistent breathlessness. In particular, we want to know where (e.g. community groups) and how breathlessness interventions are delivered (e.g. by trained volunteers) and what the intervention consists of (e.g. education, breathing techniques). Once we have identified relevant information, our team consisting of clinicians and policy experts will develop understanding of 'what works, for whom, and where.' We will present this information to several different groups in India who are interested in how people with persistent breathlessness can be supported in India (e.g. patients, healthcare professionals, community representatives). Together, we will co-design an intervention aimed at improving how people with persistent breathlessness in India are looked after. Once developed, we hope that in the future we can test whether this intervention can be delivered at a reasonable cost and is acceptable and effective in improving the quality of life of people with persistent breathlessness and their families across India.