Co-creating community engagement and involvement strategies: understanding challenges and needs of people living with multiple long-term conditions and stakeholders' perspectives in India and Nepal.

Abstract

Living with multiple long-term conditions (MLTCs) presents significant healthcare and patient-level challenges, which are further compounded by fragmented and poorly coordinated healthcare systems, leading to difficulties in access, dissatisfaction with quality of services, non-engagement with treatment protocols and poor outcomes. Overcoming these barriers requires a strong and equitable primary healthcare system that prioritises people-centred care and fosters meaningful community engagement. We aimed to understand how individuals with MLTCs navigate healthcare systems and co-create strategies to support community engagement.10 community conversations (n=90 respondents) were held in New Delhi, Jodhpur, Visakhapatnam (India), Duwakot and Bhaktapur (Nepal) between October-November 2021. These structured discussions explored experiences, beliefs, needs and perceptions of people living with MLTCs, caregivers and healthcare providers. Participants included adults aged 30-75 years, with an equal distribution of men and women. Respondents living with MLTCs reported conditions such as diabetes, hypertension, cardiovascular disease, chronic respiratory diseases and mental health conditions. Using a six-step inductive thematic analysis, we examined access, availability, affordability of healthcare services, continuity of care, expectations of health system interventions-electronic decision support system, assisted telemedicine, patient-facing services and community engagement and involvement (CEI).Six key themes emerged: (1) definition of community; (2) disease labelling, identity, social stigma, discrimination and coping mechanisms among people living with MLTCs; (3) access, availability and affordability of medications and healthcare services and associated challenges in receiving care; (4) role of local leaders, decision makers and healthcare professionals; (5) uptake, acceptability and building capacity on use of digital interventions such as telemedicine for healthcare service delivery; (6) community engagement methods, including the need for creation of community champions and innovative approaches to improve healthcare service delivery.The findings highlight significant barriers to accessing care yet also demonstrate the community's readiness to embrace digital tools, especially when guided and supported by trusted local leaders. These insights have key implications for health policy and programme design. Meaningfully engaging people with lived experiences as community champions can improve trust, screening, early diagnosis and self-management, while also bridging gaps between communities and health systems. Digital health interventions such as telemedicine should be embedded within primary care systems through culturally resonant and locally tailored approaches that build digital literacy and foster acceptance. Co-created CEI strategies can help design more equitable, people-centred and scalable health interventions.