“People here live in denial”: A qualitative study of the pervasive impact of stigma on asthma diagnosis and care in Kenya and Sudan

Epidemiological studies show a global increase in asthma, straining healthcare systems in low- and middle-income countries. There are multiple barriers to accessing diagnosis and treatment in Sub-Saharan African countries like Kenya and Sudan such as healthcare infrastructure, diagnostic tools, healthcare workers’ capacities, and cost. Asthma can be well controlled using safe and cost-effective treatments such as inhalers. Stigma related to asthma negatively impacts treatment-seeking and adherence in higher-income settings, with limited information about such impacts in Sub-Saharan Africa.

We conducted qualitative interviews and Focus Group Discussions in Kenya and Sudan to explore health systems aspects of diagnosis and management of chronic respiratory diseases. Participants included patients, primary care healthcare workers, hospitals, and community actors. Data were analysed through a framework approach; our initial analysis showed that asthma stigma was prevalent in both countries. Further analysis was done through Health, Stigma, and Discrimination Framework by Stangl.

Negative perceptions about the aetiology and prognosis of asthma contribute to stigma. Anticipated, internalized stigma, and enacted stigma affects individuals with asthma, encouraging them to hide their symptoms and resist diagnosis. This contribute to delayed healthcare seeking and treatment uptake, impacting both individuals with asthma and health professionals. Overall, stigma exacerbates challenges in communicating diagnosis, managing the illness, and maintaining psychosocial health and well-being for those with asthma.

Poor asthma control can exacerbate fear and stigma. Improving asthma control has the potential to reduce fear and positively influence community norms. The rollout of inhalers and spacers for asthma treatment should be accompanied by deliberate stigma reduction strategies and awareness raising at all levels of the system.