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

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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.