Sociocultural and moral narratives influencing the decision to vaccinate among rheumatic disease patients: a qualitative study

Introduction/objectives Vaccination is a process that involves individual, social, and ethical aspects, beyond public governance of vaccines or vaccination as a public health concern. The aim of this study is to describe the sociocultural and moral narratives that influence the decision to vaccinate in general and to vaccinate against COVID-19 specifically, among patients at the rheumatology units of two hospitals. Methods Qualitative study involving individual semi-structured interviews following an interview guide. We conducted a thematic analysis using the ATLAS.ti software, with further triangulation to verify concordance and aid in the interpretation of the data from a medical anthropology framework and using a narrative ethics approach to gain insight into the participants’ underlying moral values. Results We interviewed 37 patients in total, along with 3 rheumatologists. Five core themes emerged from the analysis to understand the decision to vaccinate: (1) information about vaccines and disease, (2) perceived risk–benefit of vaccination, (3) the physician–patient relationship, (4) governance of vaccination programs, (5) attitudes towards vaccines. Individual and family experiences with vaccination are diverse depending on the type of vaccine. The COVID-19 vaccine, as a new medical technology, is met with more controversy leading to hesitancy. Conclusions The decision to vaccinate among Mexican rheumatic disease patients can sometimes involve doubt and distrust, especially for those with a lupus diagnosis, but ultimately there is acceptance in most cases. Though patients make and value autonomous decisions, there is a collective process involving sociocultural and ethical aspects. Key points • The complexity of vaccine decision-making is better identified through a narrative, qualitative approach like the one used in this study, as opposed to solely quantitative approaches • Sociocultural and moral perspectives of vaccination shape decision-making and, therefore, highlight the importance of including patients in the development of effective clinical practice guidelines as well as ethically justified public policy • Sociohistorical context and personal experiences of immunization influence vaccine decision-making much more than access to biomedical information about vaccines, showing that approaches based on the information deficit model are inadequate to fight vaccine hesitancy