Endorsers, Extenders, Transformers, and Critics: Taxonomy of Patient Representation in Health Care
Charles University, Czech Republic
In October 2017, the Czech Ministry of Health introduced the Patients’ Council. The top-down introduction of the patient’s body followed a long-term, bottom-up campaign of patient organisations in the Czech Republic. The campaign called upon for stronger recognition of patients’ voice in health care and reflected the processes of democratisation of health care in contemporary societies. Against this backdrop, the paper analyses the public debate that surrounded the introduction of the Patients’ Council in the Czech Republic. The main objective is to examine the plurality of patient representation in health care. The debate around the question “Who should represent patients?” is explored. More specifically, the following questions are addressed: Who represents the so-called ‘empowered patient’ in the Czech Republic? What is the relationship of the patient’s voice towards the existing system of health care? What qualities, skills and capacities reinforce the legitimacy of the patient’s voice? By addressing these questions, a taxonomy of patient representations is developed, and four ideal-typical modes of patient representation are identified: endorsers, extenders, transformers, and critics. These modes of patient representation represent different positions embraced by and expected from patients concerning health care. Various and even contradictory understandings of patients’ role were not only embraced by actors outside of patient organisations (e.g. health-care professionals, politicians, policy-makers, representatives of pharmaceutical and insurance industries), but also by different actors within patient organisations. The data that underpin the analysis are drawn on the qualitative study carried out in the Czech Republic. The analysis of primary and secondary documents is complemented with observations and semi-structured interviews with citizens and policy-makers.
Alcoholics` Motivation To Attain And Maintain Sobriety Within Alcoholics Anonymous Support Groups
University of Bucharest, Romania
While addiction is a significant social problem in Romania, there has been little research into support groups as an intervention in Romania, despite the growing number of Alcoholics Anonymous (AA) support groups. Although AA has been found to be effective in other countries, unfortunately in Romania it is little known, even among physicians.The purpose of this exploratory study, which is the first known study of twelve step programs in Romania, was to explore alcoholics’ motivation to become sober and maintain their sobriety. The study specifically explores both the intrinsic and extrinsic motivation of AA attendees, as well as other factors, such as relationships, professional and economic status. This exploratory study used qualitative methods. Themes related to intrinsic motivations to become sober emerged as a much stronger theme among alcoholics who desired and maintained their sobriety than extrinsic factors. The most common intrinsic motivations were low self-esteem, dissatisfaction with alcohol consumption, an internal desire to change. Extrinsic motivations included family pressure on the individual to change and the recommendations of physicians. The extrinsic motivation turned into intrinsic motivation as alcoholics sobriety grew. The commitment theory (Rudy&Greil, 1987) can explain this shift in alcoholics` motivation since AA provides a solution to problems that they experience. Alcoholics get involed in AA, invest time and energy in AA activities, sacrifice their old identities in favour of new ones. They become commited to AA and to recovery. The findings suggest that those working in the area of substance abuse should pay more attention to the intrinsic motivations to change for alcoholics, as these appear to play an important role in becoming and maintaining sobriety.
The Anti-vaccination Robinsons – Invisible and Unrepresented Actors of Mainstream Vaccination Discourse in Poland
Jagiellonian University, Poland
The analysis of the Polish mainstream discourse shows a growing and ever more commented activity of anti-vaccination movements. The media roar about mortality, irresponsibility of non-vaccination and possible penalties for those refusing to vaccinate. Experts: doctors, academics and politicians, who participate in discussions aimed at showing the validity of vaccination, often refer to the anti-vaccination movements as using unscientific, unverified knowledge, lies and conspiracy theories. Those opposing compulsory vaccination are only visible only entangled actors, not active participants. Unrepresented and not given their voice, they are visible in public sphere though their practices. Such communities of practice are formed online, in forums and social media discussion groups, which become their desert islands. They develop practices, such as how to deal with penalties for non-vaccination or “immunize” children with infectious diseases (e.g. pox party).
The link between those desert anti-vaccination islands and the mainstream discourse is constituted by associations and organizations (eg. “STOP NOP”), which declare that they are not opponents of vaccination, but demand reliable knowledge, the freedom of choice and reliable VSE registries and compensation system. They fight for visibility in healthcare using personal stories, creating the atmosphere of fear and danger.
The study uses the theoretical context of communities of practice, epistemic communities and interest groups (Wagner, Świątkiewicz-Mośny, Polak 2018). It is based on the analysis of mainstream media discourse and Internet forums from 2009-2018, supplemented by official data and statistics on vaccination in Poland.
The Human Interest Economy: Making media cases out of patients
Institute of Social Research, Norway
This article explores how personal experiences of disease, communicated through human interest stories in the news and social media, have become and indispensable tool for health interest groups seeking attention, legitimacy, revenue and political impact. The practice of sharing personal experiences of illness in public is imbued with a strong ethos to fight stigma and create recognition and solidarity. At the same time, patient exemplars have become an increasingly vital narrative tool in today’s reporting across a broad range of media outlets and platforms, linked to a general trend of personification in the current hybrid media landscape. Yet, the fact that the selection, dramaturgy and broadcast of patient stories are closely intertwined with basic commercial production interests of the media has received little scholarly interest. On the basis of 35 interviews with management and communications professionals in Norwegian patient interest groups and health movements, the article analyzes how these organizations strategically adapt to the generic human interest formats of the media, which favor certain diseases, victims and storylines over others. As providers of patient "cases” to the media, interest groups with easy access to patient stories with a broad and immediate audience appeal has an advantage in their strategic transactions with journalists, and will more easily succeed in gaining media attention to their cause than groups representing less captivating sufferers of illness. The article analyzes the features, hierarchies and dilemmas of this human interest economy, and discusses possible ethical dilemmas of a commodification of patients experiences.