Challenges of stakeholders’ engagement for developing pragmatic, primary health care interventions for chronic respiratory diseases in low resource settings in India

Abstract Chronic respiratory diseases (CRDs) in low resource settings in India are often poorly diagnosed, leading to missed opportunities for early initiation of treatment and poor patient pathways. There is also a poor understanding in rural communities of the causes of CRDs; many symptoms are incorrectly attributed to ‘asthma’ and treatment is inconsistent and often based on inaccurate diagnoses. There is a high prevalence of CRDs in rural regions of India. It is vital that interventions are developed to improve an understanding about CRD in low resource settings in India in order to reduce exposure to common risk factors and improve access to evidence based care. We piloted a frontline health care worker delivered ‘educate, screen and treat’ intervention programme. We explored the role of stakeholders’ engagement towards the development of feasible community based interventions. The hypothesis was that without meaningful engagement with the key stakeholders, long term sustainability of the programme would be limited and potentially viewed as primarily for the organisation’s self-interest. A mixed method study combined a quantitative online survey of the sensitised health care providers and a qualitative assessment of the other stakeholders’ engagement activities. The methods of qualitative data collection included focus group discussions, feedback and individual interviews and data analysis used a thematic framework. We identified key stakeholders and investigated their knowledge, perceptions, beliefs, practices, educational needs and suggestions for improved care for CRD. Three main themes were 1) Community trust building 2) Mismatch between community awareness about CRD and access to evidence based care resources 3) Finding effective communication methods for low health literate and older age group population with CRD. First theme was built on two sub-themes: sensitised influential people in the community (community advisory committee); empowered, trained health workers in the community for patient screening and navigation. Second theme informed by three sub-themes: availability of sensitized health care providers and empowered health system; recognizing access to evidence based care for CRD in the region/district; recognizing the community’s change in behavior related to management of CRD with education. Third theme was informed by 2 sub-themes: community’s ability to understand the messages through different educational media and tools; challenges in engaging the low health literacy population. The findings of this study add to the literature on the numerous challenges faced by patients with CRD in low resource settings, indicating the need for identifying and educating key stakeholders, continuous support of patients, personalised education, and capacity building of health care providers. Given the significant challenges that the patients face, a feasible primary health care model needs to be developed incorporating strategies to deal with these challenges.