Diagnostic Pathways as Social and Participatory Practices: The Case of Herpes Simplex Encephalitis

Herpes simplex virus (HSV) encephalitis is a potentially devastating disease, with significant rates of mortality and co-morbidities. Although the prognosis for people with HSV encephalitis can be improved by prompt treatment with aciclovir, there are often delays involved in the diagnosis and treatment of the disease. In response, National Clinical Guidelines have been produced for the UK which make recommendations for improving the management of suspected viral encephalitis. However, little is currently known about the everyday experiences and processes involved in the diagnosis and care of HSV encephalitis. The reported study aimed to provide an account of the diagnosis and treatment of HSV encephalitis from the perspective of people who had been affected by the condition. Thirty narrative interviews were conducted with people who had been diagnosed with HSV encephalitis and their significant others. The narrative accounts reveal problems with gaining access to a diagnosis of encephalitis and shortfalls in care for the condition once in hospital. In response, individuals and their families work hard to obtain medical recognition for the problem and shape the processes of acute care. As a consequence, we argue that the diagnosis and management of HSV encephalitis needs to be considered as a participatory process, which is co-produced by health professionals, patients, and their families. The paper concludes by making recommendations for developing the current management guidelines by formalising the critical role of patients and their significant others in the identification, and treatment of, HSV encephalitis

Virology Experts in the Boundary Zone Between Science, Policy and the Public: A Biographical Analysis

This article aims to open up the biographical black box of three experts working in the boundary zone between science, policy and public debate. A biographical-narrative approach is used to analyse the roles played by the virologists Albert Osterhaus, Roel Coutinho and Jaap Goudsmit in policy and public debate. These figures were among the few leading virologists visibly active in the Netherlands during the revival of infectious diseases in the 1980s. Osterhaus and Coutinho in particular are still the key figures today, as demonstrated during the outbreak of novel influenza A (H1N1). This article studies the various political and communicative challenges and dilemmas encountered by these three virologists, and discusses the way in which, strategically or not, they handled those challenges and dilemmas during the various stages of the field’s recent history. Important in this respect is their pursuit of a public role that is both effective and credible. We will conclude with a reflection on the H1N1 pandemic, and the historical and biographical ties between emerging governance arrangements and the experts involved in the development of such arrangements

‘That’s how Muslims are required to view the world’:race, culture and belief in non-Muslims’ descriptions of Islam and science

Islam’s positioning in relation to Western ideals of individuality, freedom, women’s rights and democracy has been an abiding theme of sociological analysis and cultural criticism, especially since September 11th 2001. Less attention has been paid, however, to another concept that has been central to the image of Western modernity: science. This article analyzes comments about Islam gathered over the course of 117 interviews and 13 focus groups with non-Muslim members of the public and scientists in the UK and Canada on the theme of the relationship between science and religion. The article shows how participants’ accounts of Islam and science contrasted starkly with their accounts of other religious traditions, with a notable minority of predominantly non-religious interviewees describing Islam as uniquely, and uniformly, hostile to science and rational thought. It highlights how such descriptions of Islam were used to justify the cultural othering of Muslims in the West and anxieties about educational segregation, demographic ‘colonization’ and Islamist extremism. Using these data, the article argues for: 1) wider recognition of how popular understandings of science remain bound up with conceptions of Western cultural superiority; and 2) greater attentiveness to how prejudices concerning Islamic beliefs help make the idea that Muslims pose a threat to the West respectable

Review Essay: Paradigm Wars Around Interview Methodologies: Constructionism and Postmodernism "on tap" or "on top"?

Two overlapping volumes extracted from the Handbook of interview research are seen as providing a considerable variety and depth of useful technical advice for qualitative researchers and a plethora of ideological warfare and confu­sion which helps nobody. Chapters on a range of types of more or less reluctant respondents and on phone and computer-aided interviewing (on and off the Web) are followed by chapters on tran­scription and on computer-aided (or not) qualitat­ive analysis and interpretation from a variety of positions. Questions of representation are addres­sed. The review argues that post-modernist and constructivist practice can be a useful tactic in a struggle for a more reflexive and subtle researched understanding, but (as a philosophy competing for dominance) they make up a counter-productive "American ideology" which is self-contradictory, and personally and politically unhelpful. "On tap", yes; "on top", no! URN: urn:nbn:de:0114-fqs040130

Boundaries and Relationships in Homelessness Work: Lola, an Agency Manager

Auch Professionelle sind Menschen: In diesem Beitrag wird mittels eines biographischen Interviews die komplementäre und widersprüchliche Beziehung zwischen Biographie und Beruf am Beispiel einer Krankenschwester untersucht, die als Sozialarbeiterin in einer Obdachloseneinrichtung tätig ist. Es werden die Verstehensschwierigkeiten thematisiert, die im Rahmen einer Fallstudie dieser Art entstehen. Diese Schwierigkeiten werden mithilfe zweier Konzepte diskutiert: dem des "defended self " und des "theory-in-use" in der sozialen Arbeit und Berufsausbildung.The professional is also a human being. This paper explores the complementary and con­tra­dictory relation between biography and vocation in the history of a nurse who became a social work manager, as revealed in a biographic-narrative interview. It touches on the difficulties of providing insights to the interviewee in the form of feedback in a case-study paper of this kind, interpreting this difficulty through the concept of 'defended sub­jectivity', and on the theory-in-use in social work and professional training.El profesional es también un ser humano. Este trabajo explora la relación complementaria y contradictoria entre la biografía y la vocación, en la historia de una enfermera que se convirtió en una gerente de trabajo social, como lo revela en una entrevista biográfico-narrativa. Se abordan las dificultades al proporcionar ideas al entrevistado en forma de retroalimentación en un estudio de caso, en un trabajo de este tipo, interpretando esta dificultad mediante el concepto de "subjetividad protegida" y con base en la teoría en boga en el trabajo social y el entrenamiento profesional

Fronteras y relaciones en el trabajo con desamparados: Lola, una gerente de agencia

Auch Professionelle sind Menschen: In diesem Beitrag wird mittels eines biographischen Interviews die komplementäre und widersprüchliche Beziehung zwischen Biographie und Beruf am Beispiel einer Krankenschwester untersucht, die als Sozialarbeiterin in einer Obdachloseneinrichtung tätig ist. Es werden die Verstehensschwierigkeiten thematisiert, die im Rahmen einer Fallstudie dieser Art entstehen. Diese Schwierigkeiten werden mithilfe zweier Konzepte diskutiert: dem des "defended self " und des "theory-in-use" in der sozialen Arbeit und Berufsausbildung. URN: urn:nbn:de:0114-fqs0401132The professional is also a human being. This paper explores the complementary and con­tra­dictory relation between biography and vocation in the history of a nurse who became a social work manager, as revealed in a biographic-narrative interview. It touches on the difficulties of providing insights to the interviewee in the form of feedback in a case-study paper of this kind, interpreting this difficulty through the concept of 'defended sub­jectivity', and on the theory-in-use in social work and professional training. URN: urn:nbn:de:0114-fqs0401132El profesional es también un ser humano. Este trabajo explora la relación complementaria y contradictoria entre la biografía y la vocación, en la historia de una enfermera que se convirtió en una gerente de trabajo social, como lo revela en una entrevista biográfico-narrativa. Se abordan las dificultades al proporcionar ideas al entrevistado en forma de retroalimentación en un estudio de caso, en un trabajo de este tipo, interpretando esta dificultad mediante el concepto de "subjetividad protegida" y con base en la teoría en boga en el trabajo social y el entrenamiento profesional. URN: urn:nbn:de:0114-fqs040113

Review Essay: Paradigm Wars Around Interview Methodologies: Constructionism and Postmodernism "on tap" or "on top"?

Die beiden sich überschneidenden Bände – hervorgegangen aus dem Handbook of interview research – bieten einen beachtlich detailreichen Zugang zu technischen Hilfen, die nützlich für qualitativ Forschende sind, und zugleich eine Fülle an ideologischer Kriegsführung und Konfusion, die niemandem wirklich weiterhilft. Enthalten sind u.a. Kapitel über Typen problematischen Interviewverhaltens, über Telefon- und Computergestützte Interviews (online und offline), über Transkription und (nicht) Computergestützte qualitative Auswertungs- und Interpretationsverfahren unterschiedlichster Provenienz. Ebenso werden z.B. Fragen der Repräsentation behandelt. In meinem Beitrag versuche ich zu zeigen, dass postmoderne und konstruktivistische Ansätze, wie in den Büchern vertreten, zwar hilfreich sein können im Kampf um ein reflexives und subtiles Verstehen der Beforschten. Aber zugleich wird – immer dann wenn es um das Ringen einer Philosophie bzw. einer erkenntnistheoretischen Position um Dominanz geht – eine eher kontraproduktive "Amerikanische Ideologie" aufgemacht, die selbstwidersprüchlich ist und weder individuell noch (wissenschafts-) politisch weiterhilft. Insoweit: "brauchbar": ja; "unverzichtbar", nein!Two overlapping volumes extracted from the Handbook of interview research are seen as providing a considerable variety and depth of useful technical advice for qualitative researchers and a plethora of ideological warfare and confu­sion which helps nobody. Chapters on a range of types of more or less reluctant respondents and on phone and computer-aided interviewing (on and off the Web) are followed by chapters on tran­scription and on computer-aided (or not) qualitat­ive analysis and interpretation from a variety of positions. Questions of representation are addres­sed. The review argues that post-modernist and constructivist practice can be a useful tactic in a struggle for a more reflexive and subtle researched understanding, but (as a philosophy competing for dominance) they make up a counter-productive "American ideology" which is self-contradictory, and personally and politically unhelpful. "On tap", yes; "on top", no!Se considera que estos dos volúmenes que se superponen, extraídos del Manual de la entrevista de investigación, proporcionan una considerable variedad y profundidad en cuanto al asesoramiento técnico útil para investigadores cualitativos, pero también mucha guerra ideológica y confusión que no ayuda a nadie. A los capítulos sobre rangos de tipos de entrevistados más o menos renuentes y sobre entrevista por teléfono y asistida por computadora (en y fuera de la red), siguen otros capítulos sobre transcripción y análisis cualitativo, apoyado (o no) por computadoras e interpretación desde diferentes posturas. Las cuestiones de representación también son atendidas. La revisión argumenta que el postmodernismo y el construccionismo pueden ser tácticas útiles en la lucha por un entendimiento más reflexivo y sutil, sin embargo (como una filosofía compitiendo por la dominación) constituyen una "idelogía americana" contra-productiva, que es autocontradictoria y personal y políticamente no útil. ¡"a la mano", sí, "en exceso", no

Ensayo: Guerra de paradigmas en torno a las metodologías de entrevista: Construcionismo y postmodernismo ¿"a la mano" o "en exceso"?

Die beiden sich überschneidenden Bände – hervorgegangen aus dem Handbook of interview research – bieten einen beachtlich detailreichen Zugang zu technischen Hilfen, die nützlich für qualitativ Forschende sind, und zugleich eine Fülle an ideologischer Kriegsführung und Konfusion, die niemandem wirklich weiterhilft. Enthalten sind u.a. Kapitel über Typen problematischen Interviewverhaltens, über Telefon- und Computergestützte Interviews (online und offline), über Transkription und (nicht) Computergestützte qualitative Auswertungs- und Interpretationsverfahren unterschiedlichster Provenienz. Ebenso werden z.B. Fragen der Repräsentation behandelt. In meinem Beitrag versuche ich zu zeigen, dass postmoderne und konstruktivistische Ansätze, wie in den Büchern vertreten, zwar hilfreich sein können im Kampf um ein reflexives und subtiles Verstehen der Beforschten. Aber zugleich wird – immer dann wenn es um das Ringen einer Philosophie bzw. einer erkenntnistheoretischen Position um Dominanz geht – eine eher kontraproduktive "Amerikanische Ideologie" aufgemacht, die selbstwidersprüchlich ist und weder individuell noch (wissenschafts-) politisch weiterhilft. Insoweit: "brauchbar": ja; "unverzichtbar", nein! URN: urn:nbn:de:0114-fqs0401309Two overlapping volumes extracted from the Handbook of interview research are seen as providing a considerable variety and depth of useful technical advice for qualitative researchers and a plethora of ideological warfare and confu­sion which helps nobody. Chapters on a range of types of more or less reluctant respondents and on phone and computer-aided interviewing (on and off the Web) are followed by chapters on tran­scription and on computer-aided (or not) qualitat­ive analysis and interpretation from a variety of positions. Questions of representation are addres­sed. The review argues that post-modernist and constructivist practice can be a useful tactic in a struggle for a more reflexive and subtle researched understanding, but (as a philosophy competing for dominance) they make up a counter-productive "American ideology" which is self-contradictory, and personally and politically unhelpful. "On tap", yes; "on top", no! URN: urn:nbn:de:0114-fqs0401309Se considera que estos dos volúmenes que se superponen, extraídos del Manual de la entrevista de investigación, proporcionan una considerable variedad y profundidad en cuanto al asesoramiento técnico útil para investigadores cualitativos, pero también mucha guerra ideológica y confusión que no ayuda a nadie. A los capítulos sobre rangos de tipos de entrevistados más o menos renuentes y sobre entrevista por teléfono y asistida por computadora (en y fuera de la red), siguen otros capítulos sobre transcripción y análisis cualitativo, apoyado (o no) por computadoras e interpretación desde diferentes posturas. Las cuestiones de representación también son atendidas. La revisión argumenta que el postmodernismo y el construccionismo pueden ser tácticas útiles en la lucha por un entendimiento más reflexivo y sutil, sin embargo (como una filosofía compitiendo por la dominación) constituyen una "idelogía americana" contra-productiva, que es autocontradictoria y personal y políticamente no útil. ¡"a la mano", sí, "en exceso", no! URN: urn:nbn:de:0114-fqs040130