Implementing breathlessness self-management in low- and middle-income countries: co-design of breathlessness self-management resources for use in India

Abstract Breathlessness is prevalent in societies worldwide, with widespread health and socioeconomic impacts. Breathlessness self-management interventions developed in high-income countries (HICs) are promising but require contextual adaptation for low- and middle-income countries (LMICs) like India, where cultural beliefs, language, and delivery systems differ. We co-designed breathlessness self-management resources for use in India using a programme theory approach and Community-Based Participatory Research methods. We convened three stakeholder groups (Doctors (n = 9), Nurses and allied health (n = 6) and lived experiences (n = 9)) and added a fourth group (community health workers (n = 6)) based on emerging findings. We re-analysed 104 academic and lay sources identified iteratively and systematically by the Breathe-India project and presented evidence to stakeholder groups for discussion and feedback. Three rounds of online/face-to-face stakeholder workshops. Stakeholders reviewed evidence, developed shared definitions, and iteratively co-designed intervention components. Stakeholder engagement and evidence synthesis led to identification of seven key domains informing the intervention: (1) Identifying breathlessness— teach the difference between acute and persistent breathlessness (and acute-on persistent breathlessness); (2) Developing shared language—emphasising lived experience of breathlessness in simple, translatable language; (3) Addressing fear—teaching accessible methods (e.g. facial cooling) for regaining control that build confidence; (4) Building resilience—reframing activity as safe and beneficial; (5) Daily coping strategies—aligning with local beliefs and behaviours, e.g. inclusion of nutritional ‘dos and don’ts’; (6) Delivery through community infrastructure—teaching Accredited Social Health Activists (ASHAs) how to identify breathlessness in communities and challenge unhelpful beliefs—at the point of care. Outputs included training curricula, educational resources, and public-facing materials co-developed with ASHA trainers and stakeholders. We co-designed India’s first multicomponent, community-deliverable breathlessness self-management intervention using participatory methods and theory-driven processes. Implementation-effectiveness hybrid evaluation is needed to test feasibility, acceptability, and impact on patients and families.