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

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.