Conference Agenda

RN16_01c: Chronic Illness Embodiment
Wednesday, 21/Aug/2019:
11:00am - 12:30pm

Session Chair: Jonathan Peter Gabe, Royal Holloway, University of London
Location: UP.4.206
University of Manchester Building: University Place, Fourth Floor Oxford Road


“I Have to Know Where I Can Go”: Negotiations of Toilet Access in Everyday Life for People with Irritable Bowel Syndrome (IBS)

Lauren White

University of Sheffield, United Kingdom

Irritable Bowel Syndrome (IBS) is a common, long term bowel condition, characterised by symptoms of pain, constipation and/or diarrhoea, bloating, flatulence and urgency to use the toilet. Despite statistics demonstrating that up to 20% of the UK population live with IBS, there is little understanding of the social and everyday experiences of those who live with the condition. How individuals with IBS negotiate their symptoms in everyday life has had little attention in sociological studies. Drawing upon findings from 25 diary and diary-interview methods during my PhD research that has explored how individuals negotiate everyday life with IBS, I will examine how those with IBS experience and navigate toilet access when seeking to manage the symptoms of their condition, as part of participation in social life. In this paper, I will argue that toilets are increasingly a crucial social space and place for negotiating an irritable bowel. Findings demonstrate that toilets become a socially conscious feature of everyday life, demonstrated through toilet mapping and planning trips, negotiating access to toilet(s) and privacy in public social life for those living with IBS, as well as the knowledge of toilets influencing the physical and emotive nature of IBS. By illuminating this, this paper seeks to speak to the sociology of embodiment, namely the relationship between individual bodies and the social world. Moreover, it extends to offer reflections on equalities of mobilities and access to toilets and highlights them as an important feature in the constitution of our social environment.

Boundaries of Chronicity: The Ambiguous Experience of Metastatic Breast Cancer

Cinzia Greco1,2

1University of Manchester, United Kingdom; 2Centre for the History of Science, Technology and Medicine

In recent decades, metastatic breast cancer (MBC), the deadly stage of the disease in which malignant cells spread outside the breast, has seen several therapeutic innovations, which have changed its status. Although average survival time is still three years, some patients live for up to ten or fifteen years. Medical professionals and medical literature are increasingly defining MBC as a chronic condition. However, this definition is controversial as several medical professionals and breast cancer activists’ groups think that the use of the term “chronic” dismisses the seriousness of the condition.

In this presentation, I explore the epistemological and social “boundaries of chronicity” surrounding MBC. What makes MBC a chronic condition? And why do some actors consider this to be a problematic definition? In which ways and for what reasons do patients and medical professionals re-appropriate or reject this definition? Analysing the uncertain line between chronic and acute in the ambiguous case of MBC allows us to see how medical definitions can be used outside the medical context, and their impact on the social and emotional life of patients. Studying MBC is also a way of understanding how medical labels can play a role in helping patients to overcome the material and moral difficulties of illness (or hinder them from doing so). This presentation builds on data I have collected since 2012 in several studies focused on breast cancer and MBC in the UK, France and Italy. I have conducted participant observation in medical settings and more than 130 interviews with patients, medical professionals and breast cancer advocates.

The Role of Collective Efficacy in Long-Term Condition Management: A Metasynthesis

Ivaylo Vassilev1, Rebecca Band2, Anne Rogers3, Elizabeth James4

1CLAHRC, Wessex, University of Southampton, United Kingdom; 2CLAHRC, Wessex, University of Southampton, United Kingdom; 3CLAHRC, Wessex, University of Southampton, United Kingdom; 4CLAHRC, Wessex, University of Southampton, United Kingdom

Social networks have been found to have a valuable role in supporting the management of long-term conditions. However, the focus on the quality and how well self-management interventions work focus on indivdiualised behavioural outcomes such as self-efficacy. A gap therefore suggests a need for understanding the role of wider collective processes in self-management support. Collective efficacy presents a potentially useful candidate concept in the development and understanding of self-management support interventions. To date it has mainly been utilised in the context of organisations and neighbourhoods related to social phenomena such as community cohesion. Drawing on Bandura’s original theorisation this meta-synthesis explores how studies of collective efficacy might illuminate collective elements operating within the personal communities of people with long-term conditions.

A qualitative meta-synthesis was undertaken. Timing of engagement with others, building trust in the group, and legitimising ongoing engagement with the group arised as central elements of collective efficacy. The two themes forming 3rd order constructs were related to the presence of continuous interaction and on-going relational work between members of the group. Collective efficacy can develop and be sustained over time in a range of situations where individuals may not have intense relationships with one another and have limited commitment and contact with one another. Extending this to the personal communities of people with long-term conditions it may be the case that collective efficacy enables a number of engagement opportunities which can be oriented towards assisting with support from networks over a sustained length of time. This may include negotiating acceptable connections to resources and activities which in turn may help change existing practice in ways that improve long-term condition management.

The dominant role of medical perspective in Autism Spectrum Disorder policy in Italy

Angela Genova

Urbino Carlo Bo, Italy

According to WHO data 1 in 160 children has an autism spectrum disorder (ASD) and beginning in childhood this tend to persist into adolescence and adulthood, being a chronic illness. Such illness has a high impact for quality of life of individuals and their family. Affecting children, ASD touch upon the more vulnerable and dependent part of society. ASD is one of the most serious child psychiatric disorders. The hallmark feature of autism is impaired social interaction. For several reasons coping with ASD is exceptionally difficult because of its disruptive antisocial behavior, such as inappropriate public behaviors.

This paper investigates Italian policy for people with ASD applying critical discourse analysis to regulative policy documents in order to outline the controversial social construction of such disability between the social model of disability and the medical perspectives. Results bring to lights a divergent trend, two different approach: from one policy for ASD people fosters their social inclusion within independent life projects, but from the other policy supports specifically targeted residential services in the framework of medical perspective practices.

Despite the ratification of Italian Parliament of the UN Convention on Rights of people with disabilities, Italian policy for people with disabilities are dominated by a controversial tensions between the biomedical model and the social model of disability. The issue is even more evident for ASD policy. This study contributes to the debate on disability social meaning through the study of Italian disability policy for ASD people within a European policy framework.