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

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.

Chronic (persistent) breathlessness despite treatment of causal disease(s) is associated with disability and a vicious cycle of avoidance of physical activity (exertion-related breathlessness), deconditioning, worse function and increasing breathlessness. People with chronic breathlessness reduce or cease activities important for individual and societal wellbeing and, in high-resource countries, are more likely to use healthcare services. Despite availability of effective breathlessness self-management interventions in richer countries, they may not be directly transferable to India, where clinicians report lack of competence in breathlessness management and there is a serious lack of support for people with breathlessness.

This project will co-design a programme-theory to inform the development of a flexible population health, community-based education intervention. The intervention will address breathlessness-related beliefs and behaviours e.g., physical activity, cool airflow, healthcare utilisation. This will be informed by our realist review's programme theories presented in "if, then" formats to demonstrate what works, for whom, how and where.

Using a Realist approach, Intervention Mapping and the Medical Research Council Complex Intervention Framework, our objectives are to:

Understand how breathlessness self-management works in "real-life" population and individual contexts;

Understand contexts (e.g., country, setting, community systems, intervention components) for effective implementation;

Develop programme theory of 'what [breathlessness self-management interventions] works, for whom, and where;'

Co-produce a prototype intervention to improve chronic breathlessness self-management in India;

Consider how our intervention could be scaled up via population awareness;

Consider adaptation for other resource-poor settings, e.g., Nepal

With our stakeholder group, including community leaders, people with breathlessness, and clinicians we will conduct:

1. Realist review and evaluation to identify and refine evidence and theory for breathlessness self-management, producing intervention and implementation programme theory and map intervention components to 'what works, for whom, and where.'

2. Intervention development using Intervention Mapping to map intervention and implementation programme theory to intervention components, develop materials to support intervention delivery, and co-design a prototype intervention ready for early acceptability and delivery-feasibility testing in India.

This project will deliver i) important understanding of breathlessness self-management in India relevant to practitioners and policy makers; ii) the content of a prototype community-based intervention ready for further testing.

Future study will evaluate utility, applicability, affordability and feasibility of the intervention along with measures relating to beliefs (community influencers) and individual behaviours/clinical outcomes (physical and social activity, self-rated health and well-being, workforce and education participation, healthcare utilisation).