Impact Factor:1.137 | Ranking:21/36 in Social Sciences, Biomedical | 81/136 in Public, Environmental & Occupational Health | 5-Year Impact Factor:1.396Source:2012 Journal Citation Reports® (Thomson Reuters, 2013)
As the capacities of Reproductive Genetic Technologies expand, would-be parents face an increasing number of reproductive decisions regarding testing and screening for different conditions. Several studies have acknowledged the role that ‘experiential knowledge of disability’ plays in arriving at decisions around the use of these technologies; however, there is a lack of clarity within this literature as to what constitutes ‘experiential knowledge of disability’ and an over-reliance on medical diagnoses as a shorthand to describe different types of experience. Drawing on both social model of disability theory and the literature on chronic illness, this article presents an analysis of data from an in-depth qualitative interview study with 64 people with an inheritable condition in their family, Spinal Muscular Atrophy, and reports their views around reproduction and Reproductive Genetic Technologies. An experiential typology is presented which demonstrates the way in which experiences of ‘disability’, ‘embodied experiences of impairment’ or ‘embodied experiences of illness, death and bereavement’ are strategically privileged in accounts of reproductive decisions, in order to validate reproductive decisions taken, and, specifically, justify use (or non-use) of Reproductive Genetic Technologies. By highlighting the experiential categories within which participants embedded their reproductive decisions, this article draws attention to the porous and collapsible nature of diagnostic categories in the context of reproductive decision-making and genetic risk, and suggests new ways of researching ‘experiential knowledge of disability’ within these contexts which are able to account for the various contours of the embodied lived reality of life with ‘disability’. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Wednesday, November 13, 2013
Differences by degree: Fatness, contagion and pre-emption
Impact Factor:1.137 | Ranking:21/36 in Social Sciences, Biomedical | 81/136 in Public, Environmental & Occupational Health | 5-Year Impact Factor:1.396Source:2012 Journal Citation Reports® (Thomson Reuters, 2013)
Tim Brown tim.brown{at}qmul.ac.uk Queen Mary University of London, UKDrawing on evidence from the Framingham Heart Study, Christakis and Fowler in their 2007 article published in the New England Journal of Medicine make the claim that obesity spreads in social networks. Whether they are correct in this assertion is neither the concern nor focus of this article. Rather, what is of interest is the subsequent mobilisation of ‘contagion’ to describe this spread and to account for the emergence of an ‘obesity epidemic’ in contemporary society. Contrary to the argument that there is less stigma attached to obesity, the reporting of the Christakis and Fowler article suggests that being ‘fat’ remains a signifier of moral and physical decay; if we add to this the suggestion that obesity is spread within social networks, it is possible that the stigma associated with body size will begin to mirror that which is attached to other infectious bodies. In order to consider the potential implications of this, the article develops in three directions: it explores the application of contagion as a metaphor for understanding the spread of obesity; it sets this understanding within the context of scholarship on contagion and it draws on critical obesity studies literature to call for a more cautionary approach to be taken when deploying a term that when combined with pre-emptive public health discourse would add significantly to the pathologising of the corpulent, fat or obese body. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Tim Brown tim.brown{at}qmul.ac.uk Queen Mary University of London, UKDrawing on evidence from the Framingham Heart Study, Christakis and Fowler in their 2007 article published in the New England Journal of Medicine make the claim that obesity spreads in social networks. Whether they are correct in this assertion is neither the concern nor focus of this article. Rather, what is of interest is the subsequent mobilisation of ‘contagion’ to describe this spread and to account for the emergence of an ‘obesity epidemic’ in contemporary society. Contrary to the argument that there is less stigma attached to obesity, the reporting of the Christakis and Fowler article suggests that being ‘fat’ remains a signifier of moral and physical decay; if we add to this the suggestion that obesity is spread within social networks, it is possible that the stigma associated with body size will begin to mirror that which is attached to other infectious bodies. In order to consider the potential implications of this, the article develops in three directions: it explores the application of contagion as a metaphor for understanding the spread of obesity; it sets this understanding within the context of scholarship on contagion and it draws on critical obesity studies literature to call for a more cautionary approach to be taken when deploying a term that when combined with pre-emptive public health discourse would add significantly to the pathologising of the corpulent, fat or obese body. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Tuesday, November 12, 2013
'Men give in to chips and beer too easily': How working-class men make sense of gender differences in health
Impact Factor:1.137 | Ranking:21/36 in Social Sciences, Biomedical | 81/136 in Public, Environmental & Occupational Health | 5-Year Impact Factor:1.396Source:2012 Journal Citation Reports® (Thomson Reuters, 2013)
Alan Dolan a.dolan{at}warwick.ac.uk University of Warwick, UKThis article, based on qualitative research with working-class men, explores men’s perceptions and experiences regarding gender differences in health. It demonstrates how men put forward a range of behavioural/cultural, materialist/structural and psychosocial factors, which were believed to differently impact men’s health compared to women. A common theme underpinning their explanations was the ways in which men and women were located within two distinct gender categories. These characterisations were used to explain why health-damaging beliefs and behaviours were more prevalent among men and also why men were better suited for certain kinds of jobs, albeit with potential costs to their health. Men also believed that women were protected from the damaging physical and emotional impact of manual employment because of their primary role within the home and because they were less emotionally robust, which required men to shield women from the stresses they experienced. However, men’s emotional withdrawal can also be viewed as another example of how men use whatever resources are available to achieve and maintain dominance over women. Finally, the article demonstrates how a gender- and class-based approach can capture the impact of men’s health-related practices alongside the broader cultural and structural influences on men’s health. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Alan Dolan a.dolan{at}warwick.ac.uk University of Warwick, UKThis article, based on qualitative research with working-class men, explores men’s perceptions and experiences regarding gender differences in health. It demonstrates how men put forward a range of behavioural/cultural, materialist/structural and psychosocial factors, which were believed to differently impact men’s health compared to women. A common theme underpinning their explanations was the ways in which men and women were located within two distinct gender categories. These characterisations were used to explain why health-damaging beliefs and behaviours were more prevalent among men and also why men were better suited for certain kinds of jobs, albeit with potential costs to their health. Men also believed that women were protected from the damaging physical and emotional impact of manual employment because of their primary role within the home and because they were less emotionally robust, which required men to shield women from the stresses they experienced. However, men’s emotional withdrawal can also be viewed as another example of how men use whatever resources are available to achieve and maintain dominance over women. Finally, the article demonstrates how a gender- and class-based approach can capture the impact of men’s health-related practices alongside the broader cultural and structural influences on men’s health. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Surviving men's depression: Women partners' perspectives
Impact Factor:1.137 | Ranking:21/36 in Social Sciences, Biomedical | 81/136 in Public, Environmental & Occupational Health | 5-Year Impact Factor:1.396Source:2012 Journal Citation Reports® (Thomson Reuters, 2013)
Joan L Bottorff joan.bottorff{at}ubc.ca University of British Columbia, Kelowna, CanadaJohn L Oliffe University of British Columbia, Vancouver, CanadaMary T Kelly University of British Columbia, Vancouver, CanadaJoy L Johnson University of British Columbia, Vancouver, CanadaJoanne Carey University of British Columbia, Kelowna, CanadaWhile men’s gendered experiences of depression have been described, the perspectives of women partners who are affected by men’s depression have received little attention. Women partners were recruited to explore how men’s depression impacts them and its influence on gender regimes. Individual interviews with 29 women spouses were coded and analysed. Although idealized femininity positions women as endlessly patient and caring, our findings reveal significant challenges in attempting to fulfil these gender ideals in the context of living with a male partner who is experiencing depression. The strain and drain of living with a depressed man was a key element of women’s experiences. Four sub-themes were identified: (1) resisting the emotional caregiver role, (2) shouldering family responsibilities, (3) connecting men to professional care and (4) preserving the feminine self. The findings suggest that men’s depression has great potential to dislocate heterosexual gender regimes, and attention to gender relations should be included to ensure successful care management of men who experience depression. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Joan L Bottorff joan.bottorff{at}ubc.ca University of British Columbia, Kelowna, CanadaJohn L Oliffe University of British Columbia, Vancouver, CanadaMary T Kelly University of British Columbia, Vancouver, CanadaJoy L Johnson University of British Columbia, Vancouver, CanadaJoanne Carey University of British Columbia, Kelowna, CanadaWhile men’s gendered experiences of depression have been described, the perspectives of women partners who are affected by men’s depression have received little attention. Women partners were recruited to explore how men’s depression impacts them and its influence on gender regimes. Individual interviews with 29 women spouses were coded and analysed. Although idealized femininity positions women as endlessly patient and caring, our findings reveal significant challenges in attempting to fulfil these gender ideals in the context of living with a male partner who is experiencing depression. The strain and drain of living with a depressed man was a key element of women’s experiences. Four sub-themes were identified: (1) resisting the emotional caregiver role, (2) shouldering family responsibilities, (3) connecting men to professional care and (4) preserving the feminine self. The findings suggest that men’s depression has great potential to dislocate heterosexual gender regimes, and attention to gender relations should be included to ensure successful care management of men who experience depression. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine
Health: is a broad ranging, interdisciplinary, peer reviewed journal related to health and the social sciences. Focusing on the changing place of health matters in modern society, the journal continues to provide an international forum for original articles and review essays from around the world. It offers the breadth of outlook required by sociologists, psychologists, anthropologists, and cultural theorists who are addressing problems that cross disciplinary boundaries.
This journal is a member of the Committee on Publication Ethics (COPE).
"Mauled by a Bear": Narrative analysis of self-injury among adolescents in US news, 2007-2012
Impact Factor:1.137 | Ranking:21/36 in Social Sciences, Biomedical | 81/136 in Public, Environmental & Occupational Health | 5-Year Impact Factor:1.396Source:2012 Journal Citation Reports® (Thomson Reuters, 2013)
Warren Bareiss wbareiss{at}uscupstate.edu University of South Carolina Upstate, USASelf-injury among adolescents has been widely documented in the United States, Canada, Europe, and Asia; however, news coverage of self-injury has not been examined. This study analyzes 78 news accounts of self-injury among adolescents in the United States from 2007 to 2012, using critical cultural studies as a theoretical foundation and a methodology informed by Kenneth Burke’s dramatism. Narrative elements within the sample are examined in relationship to one another in order to reveal implicit meanings within the news stories. Looking across the sample, I then use a framework developed by Labov and Waletzky to examine a dominant meta-narrative that downplays social causes of self-injury—notably, various forms of trauma such as childhood sexual abuse—and instead frames self-injury as a personal choice. As a result, the remedy to the problem is not constructed as redress of contemporary pressures placed upon young people, but rather, as the responsibility of adolescents to conform to the social system that causes them to hurt themselves. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Warren Bareiss wbareiss{at}uscupstate.edu University of South Carolina Upstate, USASelf-injury among adolescents has been widely documented in the United States, Canada, Europe, and Asia; however, news coverage of self-injury has not been examined. This study analyzes 78 news accounts of self-injury among adolescents in the United States from 2007 to 2012, using critical cultural studies as a theoretical foundation and a methodology informed by Kenneth Burke’s dramatism. Narrative elements within the sample are examined in relationship to one another in order to reveal implicit meanings within the news stories. Looking across the sample, I then use a framework developed by Labov and Waletzky to examine a dominant meta-narrative that downplays social causes of self-injury—notably, various forms of trauma such as childhood sexual abuse—and instead frames self-injury as a personal choice. As a result, the remedy to the problem is not constructed as redress of contemporary pressures placed upon young people, but rather, as the responsibility of adolescents to conform to the social system that causes them to hurt themselves. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Young people and health: Towards a new conceptual framework for understanding empowerment
Impact Factor:1.137 | Ranking:21/36 in Social Sciences, Biomedical | 81/136 in Public, Environmental & Occupational Health | 5-Year Impact Factor:1.396Source:2012 Journal Citation Reports® (Thomson Reuters, 2013)
Grace Spencer Grace.spencer{at}nottingham.ac.uk The University of Nottingham, UKIn recent times, empowerment has become the focus of much work with young people amidst increasing concerns about their health. Empowerment is often offered as a ‘solution’ to such concerns, with the uncritical assumption being made that empowerment unproblematically results in positive health outcomes. While much of the health promotion literature advocates ‘empowerment’, it often does so without offering a clear conceptualisation of the word itself or indeed addressing the thorny theoretical tensions surrounding the concept’s root word of power. In light of this omission, this article offers a more theoretically informed conceptualisation of empowerment and considers the relationship to young people’s health. This article outlines a more dynamic and generative conceptualisation of empowerment than hitherto articulated in the literature, informed by Lukes’ multidimensional perspective of power. Drawing on findings from an ethnographic study on empowerment and young people’s health, this article develops six conceptually distinct forms of empowerment (impositional, dispositional, concessional, oppositional, normative and transformative). Data were collected from 55 young men and women aged 15–16 years through group discussions, individual interviews and observational work in a school and surrounding community settings in England. Crucially, these six new forms of empowerment capture and synthesise individual, structural and ideological elements of power that differentially, and sometimes inconsistently, shape the possibilities for young people’s empowerment. Of significance is the way in which these different forms of empowerment intersect to (re)produce relations of power and may offer different possibilities for health promotion. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Grace Spencer Grace.spencer{at}nottingham.ac.uk The University of Nottingham, UKIn recent times, empowerment has become the focus of much work with young people amidst increasing concerns about their health. Empowerment is often offered as a ‘solution’ to such concerns, with the uncritical assumption being made that empowerment unproblematically results in positive health outcomes. While much of the health promotion literature advocates ‘empowerment’, it often does so without offering a clear conceptualisation of the word itself or indeed addressing the thorny theoretical tensions surrounding the concept’s root word of power. In light of this omission, this article offers a more theoretically informed conceptualisation of empowerment and considers the relationship to young people’s health. This article outlines a more dynamic and generative conceptualisation of empowerment than hitherto articulated in the literature, informed by Lukes’ multidimensional perspective of power. Drawing on findings from an ethnographic study on empowerment and young people’s health, this article develops six conceptually distinct forms of empowerment (impositional, dispositional, concessional, oppositional, normative and transformative). Data were collected from 55 young men and women aged 15–16 years through group discussions, individual interviews and observational work in a school and surrounding community settings in England. Crucially, these six new forms of empowerment capture and synthesise individual, structural and ideological elements of power that differentially, and sometimes inconsistently, shape the possibilities for young people’s empowerment. Of significance is the way in which these different forms of empowerment intersect to (re)produce relations of power and may offer different possibilities for health promotion. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Monday, November 11, 2013
Treatment resistant depression in primary care: Co-constructing difficult encounters
Impact Factor:1.137 | Ranking:21/36 in Social Sciences, Biomedical | 81/136 in Public, Environmental & Occupational Health | 5-Year Impact Factor:1.396Source:2012 Journal Citation Reports® (Thomson Reuters, 2013)
Many patients with depression do not recover despite medication or therapy. Individuals with treatment resistant depression often have co-morbid anxiety, personality difficulties and drug or alcohol misuse and have been characterised as difficult, heartsink or problem personalities by general practitioners. Yet critical studies of interaction in medical settings suggest that the context may have a role in constructing the patient. A total of 12 audio-recorded routine consultations were analysed following guidelines for qualitative analysis of medical discourse. The interpretation focused on ways in which the context and structure of primary care consultations in a UK setting construct difficult encounters, which may lead to patients with treatment resistant depression being seen as difficult to manage in various ways. Three overarching observations were that presentation of multiple problems in multiple domains clash with the consultation format; that patients’ atypically high level of activity in a time-limited setting prevents patient-centred work; that the question and answer format restricts multifaceted discussions of social and emotional problems, preventing shared understandings emerging. However, although interactions appear uneasy, they are repaired and may be moderately palliative. Suggestions are made for re-orienting general practitioner work with treatment resistant depression towards long-term goal setting outside of the traditional consultation structure in order to develop shared understandings. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Many patients with depression do not recover despite medication or therapy. Individuals with treatment resistant depression often have co-morbid anxiety, personality difficulties and drug or alcohol misuse and have been characterised as difficult, heartsink or problem personalities by general practitioners. Yet critical studies of interaction in medical settings suggest that the context may have a role in constructing the patient. A total of 12 audio-recorded routine consultations were analysed following guidelines for qualitative analysis of medical discourse. The interpretation focused on ways in which the context and structure of primary care consultations in a UK setting construct difficult encounters, which may lead to patients with treatment resistant depression being seen as difficult to manage in various ways. Three overarching observations were that presentation of multiple problems in multiple domains clash with the consultation format; that patients’ atypically high level of activity in a time-limited setting prevents patient-centred work; that the question and answer format restricts multifaceted discussions of social and emotional problems, preventing shared understandings emerging. However, although interactions appear uneasy, they are repaired and may be moderately palliative. Suggestions are made for re-orienting general practitioner work with treatment resistant depression towards long-term goal setting outside of the traditional consultation structure in order to develop shared understandings. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Organ donation as transition work: Policy discourse and clinical practice in The Netherlands
Impact Factor:1.137 | Ranking:21/36 in Social Sciences, Biomedical | 81/136 in Public, Environmental & Occupational Health | 5-Year Impact Factor:1.396Source:2012 Journal Citation Reports® (Thomson Reuters, 2013)
An increasing number of patients become eligible for organ transplants. In the Netherlands, at the level of policy discourse, growing waiting lists are often referred to as a persistent “shortage” of organs, producing a “public health crisis.” In this way, organ donation is presented as an ethical, social, and medical necessity. Likewise, policy discourse offers a range of seemingly unambiguous solutions: improving logistical infrastructure at the level of hospitals, developing organizational and legal protocols, as well as public information campaigns. Instead of taking these problem and solution definitions as given, we critically examine the relationship between policy discourse and clinical practice. Based on a historical review, first, we trace the key moments of transformation where organ donation became naturalized in Dutch policy discourse, particularly in its altruistic connotation. Second, based on in-depth interviews with medical professionals, we show how those involved in organ donation continue to struggle with the controversial nature of their clinical practice. More specifically, we highlight their use of different forms of knowledge that underlie clinicians’ “transition work”: from losing a patient to “gaining” a donor. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
An increasing number of patients become eligible for organ transplants. In the Netherlands, at the level of policy discourse, growing waiting lists are often referred to as a persistent “shortage” of organs, producing a “public health crisis.” In this way, organ donation is presented as an ethical, social, and medical necessity. Likewise, policy discourse offers a range of seemingly unambiguous solutions: improving logistical infrastructure at the level of hospitals, developing organizational and legal protocols, as well as public information campaigns. Instead of taking these problem and solution definitions as given, we critically examine the relationship between policy discourse and clinical practice. Based on a historical review, first, we trace the key moments of transformation where organ donation became naturalized in Dutch policy discourse, particularly in its altruistic connotation. Second, based on in-depth interviews with medical professionals, we show how those involved in organ donation continue to struggle with the controversial nature of their clinical practice. More specifically, we highlight their use of different forms of knowledge that underlie clinicians’ “transition work”: from losing a patient to “gaining” a donor. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
'A post-transplant person': Narratives of heart or lung transplantation and intensive care unit delirium
Impact Factor:1.137 | Ranking:21/36 in Social Sciences, Biomedical | 81/136 in Public, Environmental & Occupational Health | 5-Year Impact Factor:1.396Source:2012 Journal Citation Reports® (Thomson Reuters, 2013)
Exploring patients’ narratives can lead to new understandings about perceived illness states. Intensive Care Unit delirium is when people experience transitory hallucinations, delusions or paranoia in the Intensive Care Unit and little is known about how this experience affects individuals who have had a heart or lung transplant. A total of 11 participants were recruited from two heart and lung transplant services and were invited to tell their story of transplant and Intensive Care Unit delirium. A narrative analysis was conducted and the findings were presented as a shared story. This shared story begins with death becoming prominent before the transplant: ‘you live all the time with Mr Death on your shoulder’. Following the operation, death permeates all aspects of dream worlds, as dreams in intensive care ‘tunes into the subconscious of your fears’. The next part of the shared story offers hope of restitution; however, this does not last as reality creeps in: ‘I thought it was going to be like a miracle cure’. Finally, the restitution narrative is found to be insufficient and individuals differ in the extent to which they can achieve resolution. The societal discourse of a transplant being a ‘gift’, which gives life, leads to internalised responsibility for the ‘success’ or ‘failure’ of the transplant. Participants describe how their experiences impact their sense of self: ‘a post-transplant person’. The clinical implications of these findings are discussed. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Exploring patients’ narratives can lead to new understandings about perceived illness states. Intensive Care Unit delirium is when people experience transitory hallucinations, delusions or paranoia in the Intensive Care Unit and little is known about how this experience affects individuals who have had a heart or lung transplant. A total of 11 participants were recruited from two heart and lung transplant services and were invited to tell their story of transplant and Intensive Care Unit delirium. A narrative analysis was conducted and the findings were presented as a shared story. This shared story begins with death becoming prominent before the transplant: ‘you live all the time with Mr Death on your shoulder’. Following the operation, death permeates all aspects of dream worlds, as dreams in intensive care ‘tunes into the subconscious of your fears’. The next part of the shared story offers hope of restitution; however, this does not last as reality creeps in: ‘I thought it was going to be like a miracle cure’. Finally, the restitution narrative is found to be insufficient and individuals differ in the extent to which they can achieve resolution. The societal discourse of a transplant being a ‘gift’, which gives life, leads to internalised responsibility for the ‘success’ or ‘failure’ of the transplant. Participants describe how their experiences impact their sense of self: ‘a post-transplant person’. The clinical implications of these findings are discussed. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
'DSM-V is taking away our identity': The reaction of the online community to the proposed changes in the diagnosis of Asperger's disorder
Impact Factor:1.137 | Ranking:21/36 in Social Sciences, Biomedical | 81/136 in Public, Environmental & Occupational Health | 5-Year Impact Factor:1.396Source:2012 Journal Citation Reports® (Thomson Reuters, 2013)
David C Giles David.Giles{at}winchester.ac.uk University of Winchester, UKThis article considers the fate of Asperger’s disorder in the light of proposals for the Diagnostic and Statistical Manual of Mental Disorders (5th ed.) to collapse Asperger’s disorder along with other pervasive developmental disorders into a general spectrum of autism. It is argued that a powerful lay and scientific culture has evolved around the concept of Asperger’s disorder, which has found a particularly compelling voice over the last decade in the online Asperger community, with websites such as Wrong Planet recruiting tens of thousands of members. In order to assess the impact of these proposed changes on the online Asperger community, 19 threads on the topic of Diagnostic and Statistical Manual of Mental Disorders (5th ed.) are analysed according to the arguments that community members put forward in favour of, or in opposition to, the proposals. Many members embrace the notion of the spectrum and have already coined a new identity – ‘spectrumite’ – to adapt to the diagnostic shift. Others, however, are suspicious of the motives behind the absorption of Asperger’s disorder, and potential threats to the provision of services as well as the strong ‘aspie’ identity that reflects the large literature and the online public sphere around Asperger’s disorder. To what extent this culture poses a challenge to the authority of the Diagnostic and Statistical Manual of Mental Disorders is uncertain at present. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
David C Giles David.Giles{at}winchester.ac.uk University of Winchester, UKThis article considers the fate of Asperger’s disorder in the light of proposals for the Diagnostic and Statistical Manual of Mental Disorders (5th ed.) to collapse Asperger’s disorder along with other pervasive developmental disorders into a general spectrum of autism. It is argued that a powerful lay and scientific culture has evolved around the concept of Asperger’s disorder, which has found a particularly compelling voice over the last decade in the online Asperger community, with websites such as Wrong Planet recruiting tens of thousands of members. In order to assess the impact of these proposed changes on the online Asperger community, 19 threads on the topic of Diagnostic and Statistical Manual of Mental Disorders (5th ed.) are analysed according to the arguments that community members put forward in favour of, or in opposition to, the proposals. Many members embrace the notion of the spectrum and have already coined a new identity – ‘spectrumite’ – to adapt to the diagnostic shift. Others, however, are suspicious of the motives behind the absorption of Asperger’s disorder, and potential threats to the provision of services as well as the strong ‘aspie’ identity that reflects the large literature and the online public sphere around Asperger’s disorder. To what extent this culture poses a challenge to the authority of the Diagnostic and Statistical Manual of Mental Disorders is uncertain at present. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Becoming men: Gender, disability, and transitioning to adulthood
Impact Factor:1.137 | Ranking:21/36 in Social Sciences, Biomedical | 81/136 in Public, Environmental & Occupational Health | 5-Year Impact Factor:1.396Source:2012 Journal Citation Reports® (Thomson Reuters, 2013)
Barbara E Gibson barbara.gibson{at}utoronto.ca University of Toronto, Canada; Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, CanadaBhavnita Mistry University of Toronto, Canada; Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, CanadaBrett Smith Loughborough University, UKKaren K Yoshida University of Toronto, CanadaDavid Abbott University of Bristol, UKSally Lindsay Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, CanadaYani Hamdani University of Toronto, CanadaChildren and youth with progressive conditions are living longer, and there is increased interest in designing programs that will assist them with “transitioning” to adulthood. Almost none of the transitions research to date, however, has attended to the experiences of disabled boys in “becoming men,” nor has there been critical conceptual work problematizing notions of “normal” adulthood or theorizing the complex, diverse, and gendered experiences of transitioning. In this Canadian study, we investigated the intersectionality of gender, disability, and emerging adulthood with 15 young men with Duchenne muscular dystrophy. Participants created audio diaries and photographs that were explored in in-depth interviews. Using a Bourdieusian lens and Arthur Frank’s notion of the narrative habitus, we examined how participants re/negotiated identities in everyday practices. Our analysis suggested that disability, masculinities, and generational (life stage) identities intersected through “narratives of nondifference,” wherein participants worked to establish identities as typical “guys.” Within limited fields of school and work, participants distanced themselves from the label of “disabled” and discussed their successes and challenges in terms of normative developmental trajectories. We suggest that the pursuit of “normal” is reproduced and reinforced in health and social programs and closes off other narratives and possibilities. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Barbara E Gibson barbara.gibson{at}utoronto.ca University of Toronto, Canada; Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, CanadaBhavnita Mistry University of Toronto, Canada; Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, CanadaBrett Smith Loughborough University, UKKaren K Yoshida University of Toronto, CanadaDavid Abbott University of Bristol, UKSally Lindsay Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, CanadaYani Hamdani University of Toronto, CanadaChildren and youth with progressive conditions are living longer, and there is increased interest in designing programs that will assist them with “transitioning” to adulthood. Almost none of the transitions research to date, however, has attended to the experiences of disabled boys in “becoming men,” nor has there been critical conceptual work problematizing notions of “normal” adulthood or theorizing the complex, diverse, and gendered experiences of transitioning. In this Canadian study, we investigated the intersectionality of gender, disability, and emerging adulthood with 15 young men with Duchenne muscular dystrophy. Participants created audio diaries and photographs that were explored in in-depth interviews. Using a Bourdieusian lens and Arthur Frank’s notion of the narrative habitus, we examined how participants re/negotiated identities in everyday practices. Our analysis suggested that disability, masculinities, and generational (life stage) identities intersected through “narratives of nondifference,” wherein participants worked to establish identities as typical “guys.” Within limited fields of school and work, participants distanced themselves from the label of “disabled” and discussed their successes and challenges in terms of normative developmental trajectories. We suggest that the pursuit of “normal” is reproduced and reinforced in health and social programs and closes off other narratives and possibilities. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Sidestepping questions of legitimacy: How community representatives manoeuvre to effect change in a health service
Impact Factor:1.137 | Ranking:21/36 in Social Sciences, Biomedical | 81/136 in Public, Environmental & Occupational Health | 5-Year Impact Factor:1.396Source:2012 Journal Citation Reports® (Thomson Reuters, 2013)
Sally Nathan s.nathan{at}unsw.edu.au School of Public Health and Community Medicine, UNSW AustraliaNiamh Stephenson School of Public Health and Community Medicine, UNSW AustraliaJeffrey Braithwaite Australian Institute of Health Innovation, UNSW AustraliaEmpirical studies of community participation in health services commonly tie effectiveness to the perceived legitimacy of community representatives among health staff. This article examines the underlying assumption that legitimacy is the major pathway to influence for community representatives. It takes a different vantage point from previous research in its examination of data (primarily through 34 in-depth interviews, observation and recording of 26 meetings and other interactions documented in field notes) from a 3-year study of community representatives’ action in a large health region in Australia. The analysis primarily deploys Michel de Certeau’s ideas of Strategy and Tactic to understand the action and effects of the generally ‘weaker players’ in the spaces and places dominated by powerful institutions. Through this lens, we can see the points where community representatives are active participants following their own agenda, tactically capitalising on cracks in the armour of the health service to seize opportunities that present themselves in time to effect change. Being able to see community representatives as active producers of change, not simply passengers following the path of the health service, challenges how we view the success of community participation in health. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Sally Nathan s.nathan{at}unsw.edu.au School of Public Health and Community Medicine, UNSW AustraliaNiamh Stephenson School of Public Health and Community Medicine, UNSW AustraliaJeffrey Braithwaite Australian Institute of Health Innovation, UNSW AustraliaEmpirical studies of community participation in health services commonly tie effectiveness to the perceived legitimacy of community representatives among health staff. This article examines the underlying assumption that legitimacy is the major pathway to influence for community representatives. It takes a different vantage point from previous research in its examination of data (primarily through 34 in-depth interviews, observation and recording of 26 meetings and other interactions documented in field notes) from a 3-year study of community representatives’ action in a large health region in Australia. The analysis primarily deploys Michel de Certeau’s ideas of Strategy and Tactic to understand the action and effects of the generally ‘weaker players’ in the spaces and places dominated by powerful institutions. Through this lens, we can see the points where community representatives are active participants following their own agenda, tactically capitalising on cracks in the armour of the health service to seize opportunities that present themselves in time to effect change. Being able to see community representatives as active producers of change, not simply passengers following the path of the health service, challenges how we view the success of community participation in health. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Sunday, November 10, 2013
The best laid plans? Women's choices, expectations and experiences in childbirth
Impact Factor:1.137 | Ranking:21/36 in Social Sciences, Biomedical | 81/136 in Public, Environmental & Occupational Health | 5-Year Impact Factor:1.396Source:2012 Journal Citation Reports® (Thomson Reuters, 2013)
The past decades have seen a drastic increase in the medicalization of childbirth, evidenced by increasing Caesarean section rates in many Western countries. In a rare moment of congruence, alternative health-care providers, feminist advocates for women’s health and, most recently, mainstream medical service providers have all expressed serious concerns about the rise in Caesarean section rates and women’s roles in medicalization. These concerns stem from divergent philosophical positions as well as differing assumptions about the causes for increasing medicalization. Drawing on this debate, and using a feminist and governmentality framing of the problem, we interviewed 22 women who have recently had children about their birthing choices, their expectations and their birth experiences. The women’s narratives revealed a disjuncture between their expectations of choosing, planning and achieving as natural a birth as possible, and their lived experiences of births that did not typically go to plan. They also reveal the disciplining qualities of both natural and medical discourses about birth and choice. Furthermore, their narratives counter assumptions that women, as ideal patient consumers, are driving medicalization. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
The past decades have seen a drastic increase in the medicalization of childbirth, evidenced by increasing Caesarean section rates in many Western countries. In a rare moment of congruence, alternative health-care providers, feminist advocates for women’s health and, most recently, mainstream medical service providers have all expressed serious concerns about the rise in Caesarean section rates and women’s roles in medicalization. These concerns stem from divergent philosophical positions as well as differing assumptions about the causes for increasing medicalization. Drawing on this debate, and using a feminist and governmentality framing of the problem, we interviewed 22 women who have recently had children about their birthing choices, their expectations and their birth experiences. The women’s narratives revealed a disjuncture between their expectations of choosing, planning and achieving as natural a birth as possible, and their lived experiences of births that did not typically go to plan. They also reveal the disciplining qualities of both natural and medical discourses about birth and choice. Furthermore, their narratives counter assumptions that women, as ideal patient consumers, are driving medicalization. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Diagnostic vertigo: The journey to diagnosis in systemic lupus erythematosus
Impact Factor:1.137 | Ranking:21/36 in Social Sciences, Biomedical | 81/136 in Public, Environmental & Occupational Health | 5-Year Impact Factor:1.396Source:2012 Journal Citation Reports® (Thomson Reuters, 2013)
Systemic lupus erythematosus (lupus) is a complex condition characterised by wide ranging symptoms that are sometimes transient in nature. This makes recognising and diagnosing lupus particularly challenging for both patients and practitioners. The diagnostic process in this condition is a complex interplay between the boundaries of knowledge and power, control, integrity and legitimacy, which are (re)constructed and (re)negotiated between contemporary medicine, the patient and practitioner. Utilising data generated through a qualitative research design, this article illustrates some of the challenges lupus presents in the clinical encounter. We argue that the diagnosis of lupus is not a clinical event or a ‘diagnostic moment’. Rather, it constitutes a journey in and of itself, one which, for many of the respondents in this study, has no diagnostically satisfying conclusion. We conclude that uncertain diagnoses, such as lupus, illustrate the extent of both embodied and clinical doubt in, what might be termed, contemporary conditions and, concomitantly, throw into sharp relief the nature of the diagnostic process. This process, in the context of lupus, and other uncertain conditions, generates, we would argue, a sense of diagnostic vertigo. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Systemic lupus erythematosus (lupus) is a complex condition characterised by wide ranging symptoms that are sometimes transient in nature. This makes recognising and diagnosing lupus particularly challenging for both patients and practitioners. The diagnostic process in this condition is a complex interplay between the boundaries of knowledge and power, control, integrity and legitimacy, which are (re)constructed and (re)negotiated between contemporary medicine, the patient and practitioner. Utilising data generated through a qualitative research design, this article illustrates some of the challenges lupus presents in the clinical encounter. We argue that the diagnosis of lupus is not a clinical event or a ‘diagnostic moment’. Rather, it constitutes a journey in and of itself, one which, for many of the respondents in this study, has no diagnostically satisfying conclusion. We conclude that uncertain diagnoses, such as lupus, illustrate the extent of both embodied and clinical doubt in, what might be termed, contemporary conditions and, concomitantly, throw into sharp relief the nature of the diagnostic process. This process, in the context of lupus, and other uncertain conditions, generates, we would argue, a sense of diagnostic vertigo. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Revaluing donor and recipient bodies in the globalised blood economy: Transitions in public policy on blood safety in the United Kingdom
Impact Factor:1.137 | Ranking:21/36 in Social Sciences, Biomedical | 81/136 in Public, Environmental & Occupational Health | 5-Year Impact Factor:1.396Source:2012 Journal Citation Reports® (Thomson Reuters, 2013)
The clinical use of blood has a long history, but its apparent stability belies the complexity of contemporary practices in this field. In this article, we explore how the production, supply and deployment of blood products are socially mediated, drawing on theoretical perspectives from recent work on ‘tissue economies’. We highlight the ways in which safety threats in the form of infections that might be transmitted through blood and plasma impact on this tissue economy and how these have led to a revaluation of donor bodies and restructuring of blood economies. Specifically, we consider these themes in relation to the management of recent threats to blood safety in the United Kingdom. We show that the tension between securing the supply of blood and its products and ensuring its safety may give rise to ethical concerns and reshape relations between donor and recipient bodies. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DCThis is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.
The clinical use of blood has a long history, but its apparent stability belies the complexity of contemporary practices in this field. In this article, we explore how the production, supply and deployment of blood products are socially mediated, drawing on theoretical perspectives from recent work on ‘tissue economies’. We highlight the ways in which safety threats in the form of infections that might be transmitted through blood and plasma impact on this tissue economy and how these have led to a revaluation of donor bodies and restructuring of blood economies. Specifically, we consider these themes in relation to the management of recent threats to blood safety in the United Kingdom. We show that the tension between securing the supply of blood and its products and ensuring its safety may give rise to ethical concerns and reshape relations between donor and recipient bodies. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DCThis is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.
Networks of knowledge or just old wives' tales? A diary-based analysis of women's self-care practices and everyday lay expertise
Impact Factor:1.137 | Ranking:21/36 in Social Sciences, Biomedical | 81/136 in Public, Environmental & Occupational Health | 5-Year Impact Factor:1.396Source:2012 Journal Citation Reports® (Thomson Reuters, 2013)
Alex Broom a.broom{at}uq.edu.au The University of Queensland, AustraliaCarla Meurk The University of Queensland, AustraliaJon Adams University of Technology Sydney, AustraliaDavid Sibbritt University of Technology Sydney, AustraliaComplementary and alternative medicine is increasingly popular in Australia and particularly among women. While existing research provides some understanding of women’s engagement with complementary and alternative medicine and biomedicine, there has been comparatively little examination of the day-to-day character of their experiences. In this study, we utilise solicited diaries with women aged 60–65 years drawn from the 1946–1951 cohort of the Australian Longitudinal Study on Women’s Health to capture the temporal dimension of their therapeutic engagement. Focusing on 30 active complementary and alternative medicine users, we explore women’s experiences of managing their health, illness and well-being over a 1-month period. The themes that emerge from their diaries illustrate the day-to-day enactment of lay expertise through informal knowledge networks, practices of self-trialling and experimentation and the moralities underpinning self-care. The diaries provide unprecedented temporal insight into the (often problematic) enactment of lay expertise at the nexus of complementary and alternative medicine and biomedicine. They also point to the value of longitudinal techniques of data collection for augmenting more traditional sociological ways of exploring therapeutic pluralism. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Alex Broom a.broom{at}uq.edu.au The University of Queensland, AustraliaCarla Meurk The University of Queensland, AustraliaJon Adams University of Technology Sydney, AustraliaDavid Sibbritt University of Technology Sydney, AustraliaComplementary and alternative medicine is increasingly popular in Australia and particularly among women. While existing research provides some understanding of women’s engagement with complementary and alternative medicine and biomedicine, there has been comparatively little examination of the day-to-day character of their experiences. In this study, we utilise solicited diaries with women aged 60–65 years drawn from the 1946–1951 cohort of the Australian Longitudinal Study on Women’s Health to capture the temporal dimension of their therapeutic engagement. Focusing on 30 active complementary and alternative medicine users, we explore women’s experiences of managing their health, illness and well-being over a 1-month period. The themes that emerge from their diaries illustrate the day-to-day enactment of lay expertise through informal knowledge networks, practices of self-trialling and experimentation and the moralities underpinning self-care. The diaries provide unprecedented temporal insight into the (often problematic) enactment of lay expertise at the nexus of complementary and alternative medicine and biomedicine. They also point to the value of longitudinal techniques of data collection for augmenting more traditional sociological ways of exploring therapeutic pluralism. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Transformations of self and sexuality: Psychologically modified experiences in the context of forensic mental health
Impact Factor:1.137 | Ranking:21/36 in Social Sciences, Biomedical | 81/136 in Public, Environmental & Occupational Health | 5-Year Impact Factor:1.396Source:2012 Journal Citation Reports® (Thomson Reuters, 2013)
Forensic mental health inpatients in medium-secure settings have a limited capacity for sexual expression during their stay in hospital. This is due to a number of factors, including a lack of willingness on behalf of staff to engage with sexual issues, as a result of safety fears and ambiguity regarding the ability of the patient to consent. Furthermore, UK forensic medium-secure units do not provide conjugal suites for patients to have sexual relations, with their spouse or other patients. To date, there is no empirical research on how forensic psychiatric patients (or service users) manage their sexuality, while in hospital and when released into the community. Here, we present an analysis of semi-structured interviews with patients at a UK medium forensic unit, in order to explore these issues further. More specifically, we examine how the public exclusion of sexuality from these units results in sexuality being experienced as sectioned off or amputated, such that a new form of sexuality emerges, one that has been cultivated by the psychologically informed practices operating within the unit. This process, we argue, produces a psychologically modified experience, a new form of self-relation that continues to modify when released into the broader ecology of the community. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Forensic mental health inpatients in medium-secure settings have a limited capacity for sexual expression during their stay in hospital. This is due to a number of factors, including a lack of willingness on behalf of staff to engage with sexual issues, as a result of safety fears and ambiguity regarding the ability of the patient to consent. Furthermore, UK forensic medium-secure units do not provide conjugal suites for patients to have sexual relations, with their spouse or other patients. To date, there is no empirical research on how forensic psychiatric patients (or service users) manage their sexuality, while in hospital and when released into the community. Here, we present an analysis of semi-structured interviews with patients at a UK medium forensic unit, in order to explore these issues further. More specifically, we examine how the public exclusion of sexuality from these units results in sexuality being experienced as sectioned off or amputated, such that a new form of sexuality emerges, one that has been cultivated by the psychologically informed practices operating within the unit. This process, we argue, produces a psychologically modified experience, a new form of self-relation that continues to modify when released into the broader ecology of the community. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Time and the psychiatric interview: The negotiation of temporal criteria of the depressive disorder
Impact Factor:1.137 | Ranking:21/36 in Social Sciences, Biomedical | 81/136 in Public, Environmental & Occupational Health | 5-Year Impact Factor:1.396Source:2012 Journal Citation Reports® (Thomson Reuters, 2013)
Justyna Ziólkowska jziolkowska{at}swps.edu.pl University of Social Sciences and Humanities, PolandIn this article, I am concerned with doctors’ negotiations of the temporal dimension of the diagnostic criteria of depressive disorders during the first psychiatric interview. The data come from 16 initial psychiatric interviews recorded by doctors in three psychiatric hospitals in Poland. Taking a constructionist view of discourse and psychiatric practices, I shall argue that the discursive practice related to temporal information about patients’ illnesses serves in gaining information, which is useful in the medical model of psychiatric diagnosis. The doctors positioned the patients’ experiences on the timeline when the illness history was taken and temporal information authenticated the information. Conversely, the patients’ current conditions were constructed in a limitless present, which allowed the psychiatrists to remove the relativity. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Justyna Ziólkowska jziolkowska{at}swps.edu.pl University of Social Sciences and Humanities, PolandIn this article, I am concerned with doctors’ negotiations of the temporal dimension of the diagnostic criteria of depressive disorders during the first psychiatric interview. The data come from 16 initial psychiatric interviews recorded by doctors in three psychiatric hospitals in Poland. Taking a constructionist view of discourse and psychiatric practices, I shall argue that the discursive practice related to temporal information about patients’ illnesses serves in gaining information, which is useful in the medical model of psychiatric diagnosis. The doctors positioned the patients’ experiences on the timeline when the illness history was taken and temporal information authenticated the information. Conversely, the patients’ current conditions were constructed in a limitless present, which allowed the psychiatrists to remove the relativity. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
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