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.

Digital Narratives of Living With Lupus: Lived Experiences and Meanings for Latin American and Latino Patients and Their Families.

OBJECTIVE: Systemic lupus erythematosus (SLE) disproportionately affects Latin American and Latino populations, with worse outcomes compared to nonminority populations. Understanding patients' views is critical to provide culturally competent care. The objective of this research is to analyze lived experiences with SLE from comments made by Latin American and Latino patients, and their relatives and friends, on the public Facebook group "Hablemos de Lupus" (in English: "Let's Talk about Lupus"). METHODS: Deidentified narratives posted as a reaction to the most popular resources shared by the page were extracted using the Facepager application. We conducted a thematic analysis under an interpretative medical anthropology framework. RESULTS: Five core themes were demonstrated by social media comments: lived experiences with lupus, religious/spiritual thoughts, metaphors, heredity, and experiences of family and friends. Being diagnosed with lupus is perceived as a life-changing event. The fluctuating course of the disease causes uncertainty, and the perception of invisibility within the patient's social circle generates feelings of being misunderstood. Faith and spiritual thoughts are coping strategies. Patients use metaphors about the disease's meaning and their lived experiences (the purple butterfly, not belonging, bellicose metaphors) to communicate with others. Relatives and friends are impacted by their loved one's distress. CONCLUSION: Patients perceive lupus as an unpredictable illness and use metaphors to foster empathy and communicate their experiences to others. Religion is as important as medical treatment to cope with the disease, and the experience of having lupus extends to family and friends. Findings can be used to improve physician-patient communication and lupus education campaigns in the Latin American and Latino population.

Vulnerability as a palimpsest: Practices and public policy in a Mexican hospital setting.

Vulnerability is a concept associated with the effects of social inequities to access health care services. On a hospital level, vulnerable populations must be identified and favored over others. The aims of this study were the analysis of the conceptions and practices of social workers regarding vulnerable patients, and the identification of theoretical elements of vulnerability given by academics. Hospital ethnography and a focus group were implemented. Social workers related vulnerability to the social needs of each patient; however, they state that they have dilemmas to identify a person in a vulnerable condition; these dilemmas are related to social differences and deservingness. Academics indicated that the vulnerability should refer to the lack of access to health services offered by the institution. Academics agree with social workers regarding the importance of considering the overlapped social and individual circumstances in each patient to recognize their vulnerable condition, regardless of belonging to any of the pre-established vulnerable groups. Finally, taking into account the way of conceptualizing vulnerability and how public policy on the identification of vulnerable patients in the hospital has been implemented, these two elements are explained using the palimpsest model, which is a figure of thought that can be applied to analyze the sociocultural significance of this complex issue, as well as other social dynamics.

The relationship between proxy agency and the medical decisions concerning pediatric patients in palliative care: a qualitative study.

BACKGROUND: The children's agency and that exercised by parents and health professionals in palliative care, along with structural limitations imposed by the conditions of inequality, will provide a new perspective from medical anthropology and biomedicine to improve pediatric palliative care in complex therapeutic scenarios. The main purpose of the study was to analyze the ways in which pediatric patients have agency in relation to their parents and palliative care (PC) professionals within the hospital setting, as well as the structural circumstances that constrain said agency. METHOD: A hospital ethnography (by means of non-participant observation and interviews) of the palliative care (PC) unit in a children's hospital was conducted over the course of six months. A thematic analysis was performed using the ATLAS.ti software . RESULTS: Thirteen cases were reconstructed of underage patients of both sexes patients together with their families; five health professionals were interviewed. The analysis identified the following 6 thematic axes, around which this article is organized: 1. The relationship between the exercise of proxy agency and the medical decisions concerning underage patients. 2. Negotiating agency and support in decision-making. 3. Child autonomy. 4. The experiences of health professionals. 5. Limitations of palliative care. 6. Bureaucratization of palliative care. CONCLUSIONS: In pediatric palliative care, agency is a process whereby different agencies intertwine: lack of pediatric patients 'agency, the parents' agency, the parents' agency as representatives of their children (proxy agency), and the agency of health professionals. The concept of relational agency is proposed, defined as a set of group actions and decision-making centered around the pediatric patients's agency and the proxy agency.

Indigenous Identification by Health Professionals in a Mexican Hospital Setting.

In this article, we describe and analyze the identification of people as Indigenous by health-care professionals in a hospital in Mexico City. This socially constructed identification is based on a "contrasting identity" of essentialist and stereotyped categories (language, place of origin, cultural practices, and poverty) that promote the normalization of inequity, marginality, and racism. The ambivalence of the invisibility of the indigenous in the health-care context also marginalizes and generates inequity when it comes to the access to healthcare.

Doctor-Patient Relationship Between Individuals With Fibromyalgia and Rheumatologists in Public and Private Health Care in Mexico.

The aim of this article was to describe and analyze the doctor-patient relationship between fibromyalgia patients and rheumatologists in public and private health care contexts within the Mexican health care system. This medical anthropological study drew on hospital ethnography and patients' illness narratives, as well as the experiences of rheumatologists from both types of health care services. The findings show how each type of medical care subsystem shape different relationships between patients and doctors. Patient stigmatization, overt rejection, and denial of the disease's existence were identified. In this doctor-patient-with-fibromyalgia relationship, there are difficult encounters, rather than difficult patients. These encounters are more fluid in private consultations compared with public hospitals. The doctor-centered health care model is prevalent in public institutions. In the private sector, we find the characteristics of the patient-centered model coexisting with the traditional physician-centered approach.