An insight into patients’ perspectives on barriers affecting participation in shared decision making among patients with diabetes mellitus in Malawi

BACKGROUND: Patient participation in decision making is a basic tenet for a patient centred care experience and, has potential to improve care experiences and responsiveness in chronic diseases such as Diabetes Mellitus (DM). However, documented experiences show that patient participation in decisions making is wanting. As Malawi strives to institutionalise patient centred care delivery, it is important to examine patients’ experiences and perceptions to identify barriers affecting their participation in shared decision making because this may provide evidence supporting strategies in implementation of the institutionalisation. AIM: The study sought to describe perspectives about barriers to participation in shared decision making among patients with DM in Malawi. METHODS: This was an exploratory qualitative study. We targeted patients attending DM clinics in four public health facilities in southern Malawi from September to December 2019. We used In-Depth Interviews and Focus Group Discussions. Data was managed using Nvivo version 11 software and analysed using Content Analysis. RESULTS: The study highlights the values, perceptions and benefits of shared decision making. Furthermore, patients’ narratives expose the struggles and vulnerabilities in their attempts to engage their providers towards shared decision making. CONCLUSION: Interactional power imbalances, insufficient dialogue and patients’ own restrictive attitudes towards engagement with their providers thwarts SDM in clinical encounters. To make SDM a reality, transforming medical education that emphasizes on the value of good patient-provider relationship and providers’ attitudes to regard patients as active partners may be a good starting point. Additionally, strategies that empower and change patients’ perceptions about SDM require investment. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12875-022-01635-9.