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- Convenors:
-
Giada Danesi
(University of Applied Sciences and Arts of Southern Switzerland)
Ayo Wahlberg (University of Copenhagen)
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- Discussant:
-
Vincent Pidoux
(Université de Lausanne)
- Format:
- Panels
- Location:
- U6-30
- Start time:
- 20 July, 2016 at
Time zone: Europe/Rome
- Session slots:
- 2
Short Abstract:
This panel will bring a critical reflection on self-management of chronic disease from a variety of theoretical, methodological and epistemological lenses. Both empowerment and autonomy as medical concepts and chronic disease as form of living will be theoretically and empirically addressed.
Long Abstract:
In past decades, chronic diseases have become a salient social, political and healthcare issue. Empowerment, autonomy and self-management have been defined as medical priorities for the Therapeutic Education (TE) of people living with chronic disease. Mobilising heterogeneous knowledge, including lay and medical notions and skills, and interacting with a large variety of healthcare professionals and other supporting actors (relatives, friends, patients, etc.) characterise the way people living with chronic disease cope with their condition.
This panel aims at bringing a critical reflection on this crucial topic of research from a socio-anthropological perspective including a variety of theoretical, methodological and epistemological lenses. It also aims at discussing the possible contribution of ethnographic and qualitative approaches to chronic disease management when confronted to mainstream medical discourses and practices on TE, empowerment, autonomy and self-management. This panel will raise questions about chronic disease as a form of living with particular symbolic and material practices and resources. Do different types of chronic diseases need different approaches, analyses and appraisals from Social Sciences (e.g. Medical Anthropology, Science and Technology Studies, Sociology of Health and Illness)? How knowledge about self-management is produced and circulates through the broad health and social networks in which people living with chronic disease are embedded? What kind of knowledge is at stake? Which are the symbolic and material resources they mobilise and how do they use them? This panel intends to put together original empirical or theoretical contributions tackling these questions (although it is not limited to them).
Accepted papers:
Session 1Helen Cramer (University of Bristol) Leila Rooshenas Becca Robinson (Bristol Clinical Commissioning Group) Helen Baxter (University of Bristol)
Paper short abstract:
This paper examines how patients, professionals and commissioners conceptualise self-management, using diabetes as a case study. It draws on patients’ and professionals’ views and approaches to self-management, elicited during a diabetes improvement project aimed at primary care services.
Paper long abstract:
Greater self-management of chronic health problems is an agreed priority for health service commissioners in times of rising population morbidity and shrinking resources. One UK decision-making body for commissioning health services suggested an approach to increase patient self-management that focused on a diabetes improvement project within primary care. The core of this project consisted of shared decision-making training for health professionals with the input of linked expert patients. The aim of this paper is to describe and understand current approaches to self-managing diabetes from the different stakeholders' perspectives'. The paper draws on emerging findings from observations of decision-making commissioner meetings over a one-year period during which the case for a diabetes improvement project was made and approved. It also draws on data collected from observations in clinical diabetic reviews, and interviews with general practitioners, nurses, practice managers and patients. The findings show that the commissioners' desire to shift the balance of responsibility for diabetes through patient shared decision-making contrasted with the existing approach to diabetes care by individual patients and health professionals. Health professionals focused their diabetes management on medication and expressed frustration at their seeming inability to influence the self-management of most of their patients. Patients' definition of self-management included keeping a careful diet, non-medical cures, and managing the bothersome symptoms of other comorbidities. Unpacking the current and sometimes conflicting UK clinical, patient and commissioning perspectives on diabetic care may help to support new approaches to self-management both in diabetes and other chronic conditions.
Sarah Sanford Lori Letts (McMaster University) Julie Richardson (McMaster University)
Paper short abstract:
We analyze interviews with individuals who completed a Self-Management (SM) course. SM as a mentality of governance evokes specific forms of choice that normalize subjects, elicit self-regulation with respect to managing chronic disease, and produce culpability in those who are non-conforming.
Paper long abstract:
The management of chronic disease has emerged as a priority for Western states in strategies to address increasing life expectancies and diseases that are often associated with lifestyle. Self-management (SM) programs tend to focus on the provision of information and skills to manage various conditions. This represents a potentially efficient form of health governance, with the development of individuals who control their disease through self-regulating measures that target unhealthy lifestyle (e.g., diet). Where health-related behaviours are intricately connected to the social determinants of health, and health inequities, SM policies and practices can be understood as repositioning responsibility for health from the state onto the individual.
Drawing from Foucauldian perspectives on 'governmentality' we analyze findings from interviews (N=14) with individuals living with one or many chronic disease(s) who, voluntarily, completed a SM course that focused on managing their condition. Our analysis explores how discourses relating to SM become internalized and invoke specific effects in subjects. We present three interconnected themes that relate to people's experiences of SM training around their condition: 1) The technique of confession and disclosure of risk and individual limits; 2) The "responsibilization" of the individual for self-care and health; and 3) The role of relationality within a group setting. We argue that SM as a mentality of governance evokes specific forms of desire and choice within subjects that relate to these themes. Together these techniques work to normalize subjects, elicit self-regulation with respect to the management of chronic disease, and produce culpability in those who are non-conforming.
Donna Alabdulbaqi (London School of Hygiene and Tropical Medicine )
Paper short abstract:
Drawing on a qualitative study aiming to culturally adapt a diabetes self-management programme for patients with diabetes in Saudi Arabia, this paper discusses how the idea of ‘culture’ was generally used by patients and clinicians to justify the inadequate adoption of self-management behaviours.
Paper long abstract:
Self-management is an integral part of chronic disease management. Diabetes self-management programmes have shown to be effective. However, they are not standard practice in all high prevalence settings. For example, although the prevalence of Type 2 Diabetes in Saudi Arabia is 23%, such programmes have yet to be developed and deployed to serve this population. Self-management programmes are highly culturally and context specific, requiring substantial research and refinement to make them effective. This paper reports on how the well regarded Stanford Diabetes Self-Management Programme was culturally adapted for Saudi patients. A total of 39 participants were recruited from clinic settings to attend the six week programme and their feedback was used to inform the adaptation. A qualitative study of this process and of experiences of diabetes was built into the programme. This consisted of informal discussions with medical staff in clinics and a series of focus groups with participating patients to explore perceptions of the programme and barriers to self-management. These were audio-recorded, transcribed verbatim and thematically analysed. One striking set of findings that emerged from the analysis were the ways in which the idea of 'culture' was widely used by both patients and medics to refute expectations of self-management and thereby justify practices deemed 'unhealthy'. These findings can help inform the effective cultural adaptation of self-management programmes.
Hayley MacGregor (Institute of Development Studies)
Paper short abstract:
In South Africa, there has been significant state investment in developing models of care for HIV, underpinned by notions such as treatment literacy and patient empowerment. The paper reflects critically on such ‘innovations’ in self-management and the extension of these to other chronic diseases.
Paper long abstract:
The South African Department of Health is proud of the national anti-retroviral (ARV) programme, which offers support to 2.7 million HIV positive people. This service has benefited from ear-marked resources and dedicated staffing. Models of care have evolved under the influence of notions of rights, patient empowerment and treatment literacy, which underpin the systems that aim to support long term self-management of illness. However, with time, concerns have developed regarding declining 'retention-in-care' in the ARV programme, an indicator of the number of people collecting medication and attending healthcare appointments. Moreover, there is political pressure to distribute budgets more equitably, by creating an 'integrated' chronic illness stream in health facilities and extending systems of the same standard as HIV for people with non-communicable disease.
Based on recent fieldwork in state health facilities in the Western Cape Province of South Africa, I critically examine the politics of integration of care for chronic disease and the search for 'innovations' on the part of public sector managers to improve adherence to treatment and to decongest facilities. One such measure involves implementing 'tiered care' for HIV by identifying 'responsible' patients who can be encouraged in self-management. I reflect on some of the assumptions underlying this identification of particular groups of people for differential care, and the challenges associated with reliance on self-care and community-based support in low-income settings. In conclusion, I consider the implications of divergent understandings of chronicity, recovery and the temporality of illness for epidemiological indicators such as retention-in-care.
Paula Bronson (UCL)
Paper short abstract:
Interviews with participants from groups that teach strategies for living with chronic pain were analyzed using a narrative phenomenological lens. Insights gained from experiences within the patient-centered approach groups were used to understand the place of such programs within biomedical discourse.
Paper long abstract:
According to the National Pain Audit compiled by the British Pain Society (BPS) from 2010 through 2012, 7.8 million in the UK suffer with chronic pain (BPS 2012). This qualitative study was conducted to better understand the role of self -management in BPS guideline recommended group chronic pain programs as delivered within a Bengali community in East London. Drawing on Mattingly's (2010) notion of the paradox of hope as practice created by families with chronically ill children, I place the experience of living with chronic pain and the cultivation of self management concepts within biomedical discourse in the Bengali pain management program as a comparable paradox. I argue that in a similar manner, participants in the program seek medical attention to remove or reduce their pain. However, in contrast to their expectations they may be told that the pain cannot be further pharmacologically or surgically managed entirely and they can then learn to self manage, often with evidence based medical guidelines not particular to their community and experience. Therefore, the lived experience of illness and healing as transformative is paradoxical to the chronic pain patient. The understanding of concepts of self-efficacy, acceptance, and empowerment that are promoted in the programs may not be readily accessible and understood. Rather , day-to-day life is an unavoidable need to escape pain rather than transform as encouraged in the program. Further questions are posed for patient centered care and how this Bengali community may begin to construct meaning towards healing.
Marianick Pichon (Université de Bordeaux)
Paper short abstract:
This paper questions the way therapeutic education (TE) is currently provided in general practice. The educational sciences point of view allows a critical reflection on predominant approaches in this field and presents as results an analysis of how knowledge circulates between patients and doctors.
Paper long abstract:
This contribution stresses the importance of tackling crucial subjects such as autonomy and self-management in an original way. We need to define ‟education" (within ‟therapeutic education") in a much broader scale, as a transformation of one's relationship with the world more than as the result of a behavioural equation. This requires a shift in theoretical and methodological approaches of chronic disease.
This communication exemplifies this shift by presenting the results of a qualitative study on non-therapeutic adherence of cardiovascular patients. Those diseases are very specific, as they remain silent until they strike; therefore, the patient does not even necessarily see himself as sick. They ask for lifestyle transformations rather than technical competences, which makes TE very difficult to perform and assess, because it is way harder to make a patient change his way of life than to teach him to take his blood pressure.
This work shows how knowledge is built and circulates from General Practitioners (GPs) to patients but also the other way around and how this circulation improves or damages therapeutic relationship. The diversity of Backgrounds (Searle, 1982) between patients and GPs leads to the conclusion that the consultation may be a physical encounter but it is not an educative moment (or only under fragile conditions). Patients then relate to whatever they can hold to: epistemic trust in the GP (and not actual educative relationship), family's help, common sense, etc. Hopefully new approaches can help to prevent patients and educators' efforts to get lost because of these phenomena.
Natasja Kingod (Steno Diabetes Center A/S/Department of Anthropology, Copenhagen)
Paper short abstract:
Online communities on Facebook for people with type 1 diabetes work as a database on ‘lived knowledge’ – a unique space for peer interaction in daily life with possibility to empower individuals in their everyday self-care.
Paper long abstract:
Online communities for people with type 1 diabetes are increasing in Denmark as well as worldwide, opening up a virtual space through which exchange of experience, social support and connections among peers are made possible. Especially peer interaction through Facebook is valued among Danish adults with type 1 diabetes as a fast way to exchange experience in the everyday chronic care homework entailed by their illness. This study investigates how virtual and non-virtual dimensions are interlinked by exploring processes and practices of knowledge production and social support in Facebook communities. Data has been gathered through ethnographic fieldwork based on online and offline methods such as online observations of Facebook communities for people with type 1 diabetes, practice-near face-to-face interviews and participant observations among peer groups. Findings indicate that adults with type 1 diabetes exchange experiential knowledge online developed from everyday tinkering and experimentation. These experiments are carried out as the explicit knowledge obtained from health care professionals is considered insufficient to navigate everyday life with the illness. People with type 1 diabetes inspire, encourage and motivate each other to explore, manipulate and tinker with their diabetes self-care. This study reveals how they adapt technological diabetes-specific devices in order to fit them to everyday individual situations and contexts. The embodied experiential knowledge achieved from self-care experiments reciprocates across online and offline boundaries producing a situated and embodied 'lived knowledge' tailored to individual needs and everyday contexts.
Rachael Gooberman-Hill (University of Bristol)
Paper short abstract:
This paper focuses on the design of technologies that aim to facilitate self-management of long-term conditions. Reconsidering the notion that technology may empower individuals and promote autonomy, the paper draws on work within a technology design project to explore concepts including empathy and privacy.
Paper long abstract:
This paper considers key concepts in self-management of long-term conditions in the context of a multidisciplinary project to design home and wearable technology. The drive towards self-management for long-term health conditions centres on the notion that individuals take responsibility for assessing their own health and acting in ways that are commensurate with biomedical models of a good patient. The language of this approach focuses on empowered individuals taking responsibility, self-monitoring of health and changes in health status, and undertaking self-regulation and self-care, with medical assistance only sought when necessary and appropriate as defined by biomedicine. New technologies using internet enabled devices are increasingly promoted as ways to foster self-management, and home hubs and wearable technology are under development to achieve this aim. This paper reflects on work within a multidisciplinary project in which engineers, designers, social scientists, ethicists and an anthropologist are collaborating to develop such a home hub and wearable device. Reflecting on the process, the paper shows how cross-disciplinary dialogue is highlighting the importance of ethical considerations such as privacy and autonomy. By placing these in the foreground of conversations about the needs of 'end users' of the technology, core concepts come under scrutiny, including monitoring and empowerment. This paper describes empirical and conceptual work within the multidisciplinary project. It suggests that previous research into the role of empathy in such a design context remains relevant if we are to understand how best to engage as anthropologists in fast-paced settings of technological innovation for self-management of health.
Rebecca Oxley (Durham University)
Paper short abstract:
This paper describes how self-management of COPD symptoms is simultaneously a medically encouraged, conscious strategy and a subjective rhythm of negotiating relationships and environmental conditions in everyday life; realities which often do not align in the experiences of those with COPD.
Paper long abstract:
Chronic obstructive pulmonary disease (COPD) is a serious long-term lung disease estimated to affect over three million people in the United Kingdom. Many of those living with COPD are 'expert patients' learning to cope with and manage their conditions. This paper describes how for those living with COPD, self-management of symptoms is simultaneously a medically encouraged, conscious strategy and an embodied rhythm of negotiating relationships and conditions in everyday life. Like the regulation of breath, this social rhythm is a crucial means to decipher how subjective experiences of interaction, movement and changes to certain abilities do not always align to conventional ways of comprehending patient autonomy and agency. Exploring the experiences of those attending lung condition support groups in North East England, this paper follows the subtle and intricate ways those with COPD negotiate and incorporate various health-related knowledges. This includes pacing, the formation/modification of habits and careful management of selves and identities when facing instances of stigma, and the apparent 'shrinking' of ones sense of being-in-the-world. This paper considers how notions of somatic awareness and 'biographical disruption' (as affecting behaviours, explanatory frameworks and initiating the mobilisation of resources) can further reveal what it is like to live and manage chronic illness. In doing so it aims to bring further visibility to the reality of an arguably invisible disease.