Early diagnosis and the re-making of patient subjectivity: the case of multiple sclerosis
Polytechnic University of Marche, Italy
The diagnostic improvement is enabling earlier diagnosis for many diseases like multiple sclerosis (MS). This allows initiating appropriate medication at early stages, managing the symptoms, preventing exacerbations and, in some cases, improving outcomes. However, early diagnosis is also deeply changing the social construction of patient subjectivity, the relationship between health professionals and citizens, as well as the social and cultural representation of health and illness. In particular, patients and health professionals are forced to negotiate the treatment and the very subjectivity of newly diagnosed MS in a somehow different way from the past. In this regard, the tension between the ‘experienced illness’ and the ‘semantic illness’, as well as between the ‘institutional sickness’ and the ‘sickscape’ (Maturo, Conrad, 2009) may become more evident. Moreover, drawing on Corbin and Strauss’ work (1985; 1988) the point in time when the diagnosis occurs differently affects the three lines of work -the biographical work, the everyday life work and the illness work – their trajectory and their intersection (Robinson, 1990).
In this theoretical framework, the paper presents the main results of a qualitative research on multiple sclerosis carried out in the Marche Region (Italy), between February 2015 and April 2016. We collected 20 illness narratives of patients with multiple sclerosis and their caregivers and carried out in-depth interviews with the healthcare team in charge of the special unit for MS in the main Regional Hospital. Special emphasis was placed on a relational perspective, investigating: how the diagnosis influences the three lines of work, the subjective perception of being ill, the relationship with health professionals, significant others and friends.
‘Sharing social labour': humanization in hospital treatments between organisational and subjective needs
University of Eastern Piedmont, Italy
The humanization of healthcare and the attention paid to patients, as person and not only as individuals needing medical intervention, is considered one of the basic principles guiding the organization and actions of European welfare system. In order to implement this principle, suitable organization forms and sufficiently trained professionals are required, as well as a constant 'labour' carried out by patients, who are very active subjects in their therapeutic relationships. This 'labour' is often disregarded, although it is indispensable to give form to respectful therapeutic relationships involving patients, medical personnel, and caregivers.
This paper will present some results of a research project including 80 stories of illness by hospitalized patients (suffering from heart failure or colorectal cancer). It aims at exploring some social processes which realize humanization in medical fields and 'shared social labour' between patients and healthcare professionals necessary to implement such principle. Special attention will be given to patients' effort to adapt their diagnostic path and treatment to their needs (personalisation process) and to adjust themselves to different care contexts (familiarisation process). For this purpose, we will analyse and discuss a few forms of negotiation detectable in therapeutic relationships, resistance and compliance processes which come to light in the stories of illness we gathered, as well as the management processes of the power differential existing between patients, caregivers and health workers in order to humanise treatments and therapies.
Humanism in medicine - practical dimension: analysis of the documents (complaints and requests of patients) - problems and dilemmas
University of Lodz Faculty of Economics and Sociology, Poland
Although "about the patient" much has been written, however, due to the complexity and changing nature of the problems, we can still feel the insufficiency and desire to deepen and broaden the framework of reflection in this area. Especially in the case of "analysis of the patient's actions" functioning in contemporary medicalized reality. Reality, in which the typical becomes a crossing borders of intervention in nature, the biological dimension of the human being; which says about transcendence; about the potential biomedical research - the opportunities and threats created by new technologies; which is raising issues of importance to discover new methods and tools for effective diagnosis and treatment. All actions are guided by the most important goal: the good of mankind and man. However, is the reality keeping pace with the ideas? Is the pursuit of the noble objectives of the medicine not losing so important for it humanistic element? Complaints and requests made to the authorities upholding respect for the rights of the patient suggest a positive answer to this question.
In the speech are presented selected results of a larger research project. The results of the analysis of complaints and requests submitted to the Professional Liability Officer of Regional Medical Chamber in Lodz (1990-2010). The time frame and the problem of the analyzed material can be considered reliable exemplification of "disappearance" of the humanistic element in the “patient - medical staff” relationship and indicates the nature of the problems faced by patients over 20 years. Selecting the indicated data also allows to bring up the conclusions of a broader nature.
The field of kidney transplantation in Turkey: familial care, ethical dilemmas and biomedical practice
Koc University, Turkey
Turkey has an advanced medical infrastructure and qualified medical staff in organ transplantation that is also financially supported by the government. Yet, the transplant practice in the country suffers from organ shortage. The number of patients in the national organ waiting list exceeds the number of deceased donors. This creates a unique donation pattern in which the majority of transplants are from living, mostly blood-related donors. That is, donors and recipients know and relate to each other in very intimate ways. This paper thus asks: How does the biomedical practice of organ transplantation interact with the intimate, familial and personal dimensions of care and sacrifice? Against the backdrop of Turkey’s experience with organ donation since the late 1960s and the neoliberalization of health care since the early 2000s, this paper ethnographically examines the experiences of kidney transplant candidates and donors, their families, caregivers and clinical professionals in a clinical setting in Turkey. This paper not only provides an empirically grounded understanding of how people decide to donate or sell their organs within a complex network of gendered familial obligations and expectations, but also shows the ways in which transplant processes as the icon of medical accomplishment are dependent on and mediated through local, gendered forms and practices of care, kinship and intimacy. This research aims to reveal the hidden risks and dangers of normalization and routinization of live donor kidney transplant especially for the younger populations and women.
Social conditions and smoke behaviours during the recent crisis in Italy
1Università degli Studi di Milano, Italy; 2Università degli Studi di Milano-Bicocca, Italy
The aim of this study is to describe the trend of the relationship between socioeconomic position and tobacco consumption in Italy during the years of the recent crisis (from 2005 until 2013).
Socio-epidemiological literature presents mixed results about the impact of economic crisis on smoke behaviours (Asgerisdottir et al. 2014; Ruhm 2005; Gallus et al. 2015; Charles e DeCicca 2008). Some scholars find a positive effect in terms of a general reduction of the propensity to smoke but others show that this diminution doesn’t concern vulnerable people (for example unemployed persons). In Italy descriptive reports suggest a substantial overall stability during the period considered (Costa et al. 2012). Smoke has well-known consequences on psycho-physical wellbeing and it’s related to social inequalities in health, therefore in this framework it’s important to investigate the relation between vulnerable social conditions and tobacco habits.
Data used stem from the two annual Istat’s surveys: the household “Family Expenditure Survey” (from 2005 to 2013) and the individual multi-purpose survey “Aspects of daily life” (from 2005 to 2013). We apply multilevel regression models to estimate the diachronic variation over time and structural equation models (SEM) to estimate associations between individual socio-economic indicators and tobacco consumption. In particular, we analyse the relations between indicators of life and economic satisfaction and the propensity to smoke and the number of cigarettes smoked.
First findings suggest a substantial role of the economic crisis in tobacco behaviours both at household and individual level. Our analyses seem to show higher effects of the crisis on tobacco consumption on individuals in disadvantaged socio-economic positions living in Southern Italy.