Search

Modern health‐care systems have customarily approached hepatitis C in ways that resemble the public health approach to HIV/AIDS known as 'HIV exceptionalism'. HIV exceptionalism describes the unusual emphasis on privacy, confidentiality and consent in approaches to HIV and was partly developed to address HIV/AIDS‐related stigma. In the case of hepatitis C, exceptionalist approaches have included diagnosis and treatment by specialist physicians and other 'boutique' public health strategies. The recent availability of highly effective, direct‐acting antivirals alongside goals to eliminate hepatitis C have heralded dramatic changes to hepatitis C health care, including calls for its 'normalisation'. The corollary to exceptionalism, normalisation aims to bring hepatitis C into routine, mainstream health care. This article draws on interviews with stakeholders (n = 30) who work with hepatitis C‐affected communities in policy, community, legal and advocacy settings in Australia, alongside Fraser et al.'s (2017, International Journal of Drug Policy, 44, 192–201) theorisation of stigma, and Rosenbrock et al.'s (1999, The AIDS policy cycle in Western Europe: from exceptionalism to normalisation. WZB Discussion Paper, No. P 99‐202) critique of normalisation to consider the perceived effects of hepatitis C normalisation. Stakeholders described normalisation as a stigma‐reducing process. However, they also expressed concerns about the ongoing stigma and discrimination that is not ameliorated by normalisation. We suggest that in centring normalisation, changes in health care may exaggerate the power of technological solutions to transform the meanings of hepatitis C. [ABSTRACT FROM AUTHOR]

Genomic medicine has captured the imaginations of policymakers and medical scientists keen to harness its health and economic potentials. In 2012, the UK government launched the 100,000 Genomes Project to sequence the genomes of British National Health Service (NHS) patients, laying the ground for mainstreaming genomic medicine in the NHS and developing the UK's genomics industry. However, the recent research and reports from national bodies monitoring genomic medicine's roll‐out suggest both ethical and practical challenges for health‐care professionals. Against this backdrop, this paper, drawing on qualitative research interviews with general practitioners (GPs) and documentary analysis of policy, explores GPs' views on mainstreaming genomic medicine in the NHS and implications for their practice. Analysing the NHS's genomic medicine agenda as a 'sociotechnical imaginary', we demonstrate that whilst sociotechnical imaginaries are construed as collectively shared understandings of the future, official visions of genomic medicine diverge from those at the forefront of health‐care service delivery. Whilst policy discourse evokes hope and transformation of health care, some GPs see technology in formation, an unattainable 'utopia', with no relevance to their everyday clinical practice. Finding space for genomics requires bridging the gap between 'work as imagined' at the policy level and 'work as done' in health‐care delivery. [ABSTRACT FROM AUTHOR]

This paper draws on the work of Giorgio Agamben to understand how the social organisation of care transitions can reduce people to their 'bare' life thereby making harmful and degrading treatment seemingly legitimate. The findings of a 2‐year ethnographic study show how some people experience hospital discharge as undignified, inhumane and unsafe process, expressed through their lack of involvement in care planning, delayed discharge from hospital and poorly coordinated care. Our analysis explores how these experiences stem from the way patients are constituted as 'unknown' and 'ineligible' subjects and, in turn, how professionals become 'not responsible' for their care. The result being that the person is reduced to their 'bare' life with limited value within the care system. We suggest that the social production of 'bare life' is an inadvertent consequence of reconciling and aligning multiple disciplines within a complex care system. [ABSTRACT FROM AUTHOR]

Moving away from paternalism to more equal forms of interaction in the patient–doctor relationship has been seen in positive light by policymakers, patients' rights advocates and scholars alike. Nonetheless, against the background of commercialisation and consumerism, empirical research showcases how reduced asymmetries bring in tensions and friction between patients and doctors (Greenfield et al. 2012). This paper contributes to the discussion through the examination of the patient–doctor relationship in the niche setting of private transnational healthcare markets which involve patients travelling overseas for care and where commodification, consumerism and care go hand‐in‐hand. It is geographically focused on two large cities in South‐Eastern Europe as settings where health care is provided to foreign patients – Athens and Istanbul – and empirically draws on qualitative interviews with doctors who run small/medium practices. The findings highlight that, despite excessive consumerism, power asymmetries are not mitigated but patient vulnerability shapes the patient–doctor relationship. In the transnational context, the patient faces an additional source of vulnerability: a condition of foreignness. As such, the findings stress that one relationship model (the consumerist) does not, per se, replace an older one (e.g. the Parsonian). Instead, the consumer–provider dimension co‐exists with the client–expert, patient–doctor and, finally, host–guest relation. [ABSTRACT FROM AUTHOR]

Some scholars contend that genetic medicine is transforming the experience of illness and the social category of the family - bringing future risks into the present, and potentially strengthening familial biological bonds in light of these shared genetic risks. However, research has shown that genetic information is interpreted and acted upon through a rich repertoire of adaptable social, cultural and familial factors which pre-exist and interact with biomedical knowledge. This paper reports research into families living with Neurofibromatosis Type 1 ( NF1), a highly uncertain condition the manifestation of which can vary considerably also within the same family and, for this reason, has been defined as a 'condition without parameters'. These characteristics make NF1 a particularly informative condition for the examination of family dynamics around genetic information. The study and the methodology are based on the exploration of family networks and allow us to investigate the interrelation of individual and familial constructions of the uncertainty of NF1. This also allows both theoretical and policy claims to be made about the danger of reductionist thinking about the transformative potential of genetic technologies. [ABSTRACT FROM AUTHOR]

Chronic obstructive pulmonary disease ( COPD) is a progressive illness that changes the lives of patients and their spouses dramatically. The aim of this paper is to show how spouses of COPD patients integrate their tasks as informal carers with their role as spouses and the tensions and challenges involved in this. The study draws on qualitative interviews with spouses of COPD patients, recruited from the patient pool of ambulatory pulmonary services of two hospitals in Oslo, Norway. The spouses described their great efforts to re-establish normality and continuity in their everyday lives. Accomplishing this was a delicate process because they faced several dilemmas in this work. They balanced the need to sustain the independence and integrity of both parties against the need to ensure safety and deal with the progression of the illness. We propose 'biographical we' as a concept that can highlight the great effort spouses put into establishing a sense of continuity in their lives. In times when healthcare policy involves mobilising informal caregiving resources, an awareness of the complexity of caregiving relationships is crucial when developing appropriate support for informal carers. [ABSTRACT FROM AUTHOR]