BREATHLEssness in INDIA (BREATHE-INDIA): realist review to develop explanatory programme theory about breathlessness self-management in India.

Abstract

Breathlessness is highly prevalent in low and middle-income countries (LMICs). Low-cost, non-drug, breathlessness self-management interventions are effective in high-income countries. However, health beliefs influence acceptability and have not been explored in LMIC settings. Review with stakeholder engagement to co-develop explanatory programme theories for whom, if, and how breathlessness self-management might work in community settings in India. Iterative and systematic searches identified peer-reviewed articles, policy and media, and expert-identified sources. Data were extracted in terms of contribution to theory (high, medium, low), and theories developed with stakeholder groups (doctors, nurses and allied professionals, people with lived experiences, lay health workers) and an International Steering Group (RAMESES guidelines (PROSPERO42022375768)). One hundred and four data sources and 11 stakeholder workshops produced 8 initial programme theories and 3 consolidated programme theories. (1) 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. (2) Breathlessness intervention applicability: nonpharmacological interventions can work across different contexts when they address unhelpful beliefs and behaviours. Introducing concepts like "too much rest leads to deconditioning" aligns 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. (3) 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. Breathlessness management in India must integrate symptom management alongside public health and disease treatment strategies. Self-management interventions can be implemented in an LMIC setting. However, our novel methods indicate that understanding the context for implementation is essential so that unhelpful health beliefs can be addressed at the point of intervention delivery.