Persistent breathlessness despite treatment of causal disease(s) is associated with disability and a vicious cycle of avoiding physical activity-related breathlessness, deconditioning and increasing breathlessness.
The highest burden of breathlessness is in low and middle-income countries, but most research evidence was produced in high-income countries. The Breathe-India study was a realist review which aimed to understand the contexts (e.g., country, setting, community systems, beliefs, intervention components) for development and implementation of a breathlessness intervention in India.
Working with professional and non-professional stakeholders in India, we reviewed published evidence and developed explanatory programme theory about breathlessness self-management in India.
Key findings
Context
Breathlessness is common, due to illness, environment, and lifestyle. Cultural beliefs shape misunderstandings about breathlessness; hereditary, part of aging, linked to asthma. It is stigmatised and poorly understood as a treatable issue. People often use rest, incense, or tea, while avoiding physical activity due to fear of worsening breathlessness. Trusted voices, such as healthcare workers and community members, can help address misconceptions with clear, simple messages,
Breathlessness intervention applicability
Non-pharmacological interventions can work across different contexts when they address unhelpful beliefs and behaviours. Introducing concepts like “too much rest leads to deconditioning” align with cultural norms while promoting beneficial behavioural changes, such as gradual physical activity. Acknowledging breathlessness as a medical issue is key to improving patient and family well-being.
Implementation
Community-based healthcare workers are trusted but need simple, low-cost resources/skills integrated into existing training. Education should focus on managing acute episodes and daily breathlessness, reducing fear, and encouraging behavioural change. Evidence-based tools are vital to gain support from policymakers and expand implementation.
Resources
We worked with stakeholders and a local artist to develop educational resources for community health workers, a self-help leaflet for people with breathlessness and their families and video resources.
Our first journal article has now been accepted for publication and our educational resources will be available soon.