Reconfiguring Illness Careers? Applications for Normalization Process Theory in Understanding the Work of Being a Patient

My Plenary talk at UK Society for Behavioural Medicine scientific meeting (Leeds, December 2010)
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  1 Opening Plenary AddressUK Society for Behavioral Medicine: 6th Annual Scientific MeetingUniversity of Leeds, December 14-15 2010 RECONFIGURING ILLNESS CAREERS? APPLICATIONS FORNORMALIZATION PROCESS THEORY IN UNDERSTANDING THEWORK OF BEING A PATIENTCarl May PhDFaculty of Health SciencesUniversity of SouthamptonBuilding 67 (Nightingale)University RoadHighfieldSOUTHAMPTON SO17 1BJUKTel: +44 (0)23 8059 7957c.r.may@soton.ac.uk  21.   I NTRODUCTION   Carl May c.r.may@soton.ac.ukwww.normalizationprocess.org RECONFIGURING ILLNESSCAREERS?   Slide 1 Title Slide 1.1.   I want to begin my talk this morning by thanking Professor Robbie Foy,and the UKSBM conference organizing committee for their hospitalityand for inviting me to speak today. 2   Slide 2: Acknowledgements 1.2.   I also want to acknowledge the intellectual and material contribution thatmany colleagues have made to the work that I am going to discuss thismorning. In the US, they are Victor Montori and his team at the MayoClinic in Rochester, Minnesota; in Scotland they are Frances Mair and herresearch group in Glasgow; and in England they are my former colleagues  3in the Health Technologies and Human Relations research group atNewcastle, and my current colleagues in the Faculty of Health Sciences atSouthampton, and—of course—the international ‘work of being depressed’collaborative led by Chris Dowrick at Liverpool. 3 This presentation  The problem of demographic and epidemiologicaltransition  Patient experiences as healthcare work   Introducing Normalization Process Theory  Work, Workload, and SINC   Slide 3: Outline 1.3.   In what follows, I’m going to do three things. (a) I’m going to brieflyrecapitulate the policy problem of longstanding illnesses and explore someof their structural implications; (b) I’m going to introduce a theoreticalmodel through which we can explore those implications; and finally (c), Iam going to consider how that theoretical model leads us to take a slightlydifferent tack in the way that we might think about some elements of patient-hood.1.4.   All of this will involve some rhetorical conceits. It means that I am goingto have to speak about patients as if they are homogeneous; illnesses as if they are undifferentiated; professions as if they are generalizable; and thatI must pretend that services themselves are all the same. So, I am going tobe speaking about very concrete things, in quite an abstract way.  4 2.   T HE POLICY PROBLEM : EPIDEMIOLOGICAL AND DEMOGRAPHIC TRANSITION ,  CORPORATE TRANSITIONS , AND THEIR CONSEQUENCES   4 Major demographic/epidemiological transition toolder, chronic, complex, comorbidpatients   Slide 4: Epidemiological and demographic transitions 2.1.   Across the developed world health services are subject to political demandsfor policies and practices of modernization and reform in the face of growing problems of costs and coverage. 1 Following from these problemsof political economy are important shifts in the political epidemiology of problem populations, increasingly rapid socio-technical change inhealthcare organization and delivery, and profound changes in theexperiences of patients and their significant others. These changes haveimportant implications for the ways in which patient-hood is, itself,constituted in the healthcare systems of the advanced economies. 5 Structural Changes in the organization and delivery of healthcare   Slide 5: Structural Changes in the Organization of Healthcare 2.2.   Underpinning contemporary debates about the identity and expectationsof patients is the sense that healthcare is at a cross-roads, and that this  5cross-roads defines more than the problems of demography and costs thatpolicy makers—on both sides of the Atlantic—sometimes seek to make thefocus our attention. Indeed, the current healthcare crisis can becharacterized as the price that the advanced economies must pay forsuccessfully overwhelming the mass of infectious and acute disease thatwinnowed their populations until the mid-twentieth century. Nevertheless,in those same advanced economies these successes are infrequentlycelebrated by policy-makers, who see in place of those winnowedgenerations an ever-growing cohort of older people with multiple chronicco-morbidities, and who require care over lifetime illness careers in placeof cure for episodes of acute disease and who frequently experiencemultiple co-morbidities and socio-economic disadvantages. 2 The policyproblem is therefore composed of a set of anxieties about the managementof increasingly scarce healthcare resources, in the face of ever growingdemands from increasingly complex patients. 3 In fact, the epidemiologicaland demographic transition to longstanding complex illnesses brings in itswake a set of new kinds of problems not simply for policy-makers—butalso for patients, their families, and the clinicians who work with them. Iwant to signal some of these new kinds of problems, and examine theimpulses that have driven them.2.3.   Let’s start with some things that are happening within healthcare systems.I want to point to structural changes that are derived from two mainsources: 6 Reconfiguration of professional-patientrelationships   Slide 6: Reconfiguration pf professional patient relationships
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