bluuebunny/crossref_metadata_2025_split huggingface dataset:
Health‐related quality of life and the transformation of symptoms
Authors: Armstrong David , Lilford Richard , Ogden Jane , Wessely Simon 
Published: August 2010

AbstractThis paper traces the development of health‐related Quality of Life instruments over the last half century. It identifies the emergence of key components of quality of life measurement in other health status questionnaires between about 1950 and 1980 and their formalisation in Quality of Life instruments in the mid 1980s. The common developmental thread that linked these Quality of Life instruments and their precursors was the identification of ‘distal symptoms’ that represented the impact of illness beyond its immediate bodily manifestations. The measurement of distal symptoms through Quality of Life instruments also served to detach symptoms from their customary patho‐physiological referent. Other contemporary examples of these free‐floating symptoms reinforce the argument that the nature and meaning of symptoms has been transformed over recent decades.
Body Mass Index, masculinities and moral worth: men's critical understandings of ‘appropriate’ weight‐for‐height
Authors: Monaghan Lee F. 
Published: August 2010

AbstractBased on the Body Mass Index (BMI, kg/m2), most men in nations such as the UK and USA are reportedly overweight or obese. This is authoritatively defined as a massive and growing problem. Drawing from embodied sociology, critical obesity literature and qualitative data generated during an Economic and Social Research Council funded project on masculinities and weight‐related issues, this paper offers a critical realist contribution to the obesity debate. Rather than endorsing the institutionalised war on fat, and correcting so‐called ‘laymen’ who dismiss medicalised weight‐for‐height recommendations, the following presents and honours men's justificatory accounts for levels of body mass that medicine labels too heavy (implicitly or explicitly too fat). Men's critical understandings, which are connected to their displays of moral worth, are considered under three headings: the compatibility of heaviness, healthiness and physical fitness; looking and feeling ill at a supposedly ‘healthy’ BMI; and resisting irrational standardisation. By empirically ‘bringing in’ men's meanings, sensibilities and culturally informed aesthetics, this paper casts a different light on medicalised measures that support potentially corrosive obesity epidemic psychology.
‘When you have children, you’re obliged to live’1: motherhood, chronic illness and biographical disruption
Authors: Wilson Sarah 
Published: August 2010

AbstractRecent work on biographical disruption has emphasised the critical importance of timing and context to the understanding of the effects of illness on identity. This paper takes a different approach by examining the inter‐relationship between illness and key sources of identity, in this instance HIV infection and motherhood. It is argued that, viewed in this light, biographical disruption remains a powerful analytic framework with which to explore the intense threat which may be posed to key identities by chronic, potentially fatal illnesses, and the fundamental re‐working of such identities occasioned by such threats. With reference to the empirical study on which this paper draws, it is shown that the twelve respondents’ emphasis on their need to survive and to protect their children, represented a fundamental re‐formulation of their identities as mothers and, therefore, a type of biographical disruption while paradoxically also containing elements of biographical reinforcement. It is further argued that the incorporation of such key identities into the analysis problematises work that suggests that biographical disruption is less relevant to those who have experienced difficult lives, while also highlighting the need to take greater account of gender and caring responsibilities in further work in this field.
Judging without criteria? Sickness certification in Dutch disability schemes
Authors: Meershoek Agnes , Krumeich Anja , Vos Rein 
Published: August 2010

AbstractThe gate‐keeping function that physicians perform in determining clients’ physical and mental incapacities is widely assumed to be the main reason for the rising numbers of disabled people. The sharp rise in the number of disabled has led many to claim that the disability benefits schemes are untenable. In order to regain public control and to make disabled eligibility procedures more transparent guidelines have been introduced in which medical evaluations are conceptualised as formal rational decisions. It is, however, questionable whether such measures are helpful in achieving their stated aims. This paper is based on ethnographic research on the ways physicians evaluate the eligibility of clients for disability benefits. It argues that assessing incapacity involves much more than formal rational decision‐making. Doctors’ reasoning is contextual and deliberative in character, and thus their assessment of a client's incapacity is less a technical matter than a normative one. Instead of generating transparency, guidelines based on formal rationality make the complex deliberations on which such judgments are based invisible, because they deny the normative dimension of medical expert decision‐making. Therefore, different measures have to be developed that allow this normative dimension to be articulated, since insight into this normative dimension is a necessary pre‐condition to be able to criticise disability judgments at all.
The (ir)relevance of genetics: engendering parallel worlds of procreation and reproduction
Authors: Grace Victoria M. , Daniels Ken R. 
Published: August 2010

AbstractInforming offspring of the nature of their conception when conceived via donated gametes such as donor sperm, is increasingly considered by professionals and policy makers to be desirable for many reasons. The aim of this research is to explore and understand processes within families that either facilitate or hinder the telling of children about their conception. This exploration includes analysing the complexity of sociocultural processes surrounding parents’ attempts to make sense of, and construct meanings of ‘family’. We analyse the stories of a group of New Zealand parents, representing 41 families, who have formed their families with the assistance of donor insemination. The analysis takes its point of departure from current sociological and anthropological debates in the field of kinship, or family studies. We argue that parents generate a parallel construct whereby genetic inheritance is seen to be simultaneously irrelevant (to the constitution of the family), and yet at the same time relevant (in highly bounded domains, for example related to medically specified conditions). We analyse the ambiguities of interpreting this construct as one reflecting a separation of procreation from the process of reproduction, and reflect on the implications for information‐sharing.
‘Good luck to them if they can get it’: exploring working class men's understandings and experiences of income inequality and material standards
Authors: Dolan Alan 
Published: August 2010

AbstractThis paper seeks to contribute to the recent debate within the field of inequalities in health that has focused on the relationship between income distribution and health. This has contested the extent to which the main effects of income on health are not directly related to material standards but operate through psychosocial mechanisms, linked to how people experience and perceive their relative position. However, whilst this has focused attention on the qualitative dimensions of income inequality as a potential determinant of health inequality, very little empirical work has directly examined lay perspectives. In this study I attempted to address this gap by exploring how two groups of working class men living in contrasting socio‐economic areas understood and experienced differences in income and material circumstances and how these were perceived to impact on their health. This study shows that the anger and resentment felt by these men had their roots largely in the perceptions of others and the way others treated them, rather than in income differentials per se. There was little evidence of feelings of shame or inferiority. For men at the bottom of the social ladder, financial hardship was additionally perceived as having the greatest impact on their health and well‐being.
Explaining chronic obstructive pulmonary disease (COPD): perceptions of the role played by smoking
Authors: Hansen Emily C. , Walters Julia , Wood Baker Richard 
Published: August 2010

AbstractThere are few studies that investigate how people personally affected by a chronic disease associated with cigarette smoking account for their illness. Chronic obstructive pulmonary disease (COPD) is a respiratory condition largely caused by cigarette smoking. In order to better understand how people diagnosed with COPD view the relationship between cigarette smoking and their illness we conducted semi‐structured interviews with 19 participants. We found a widespread scepticism among our respondents about medical attempts to link their illness with cigarette smoking, and doubts about whether their illness was in fact COPD at all. Only four participants described smoking as the principal reason why they had developed breathing problems. Most participants gave multi‐causal accounts that emphasised explanatory factors such as a familial tendency to respiratory illness or workplace exposure to pollution. Our findings have relevance for the development of smoking cessation interventions for people with COPD.
The fuzzy buzz word: conceptualisations of disability in disability research classics
Authors: Grönvik Lars 
Published: August 2010

AbstractThe article analyses five classical texts from the field of disability research/studies. The focus of the analysis is on how disability is defined both on a theoretical level and on an empirical or applied level. The findings suggest that definitional clarity can be questioned. First, a ‘traditional’ problem of validity occurs in some of the texts. Secondly, lack of clearly expressed and explicit definitions makes it difficult for the reader to understand what the author means with the term disability. Thirdly, some authors alter the definition of disability through their texts, without any explanations, making it arduous for the reader to follow the use and meaning of the term. It is suggested that these problems stem from the lack of proper theorising within the field of disability research. Disability researchers have been focusing on defining separate concepts, without any ambitions to relate them to each other in a theoretical frame. This means that the field of disability research consists of free‐floating concepts, poorly related to each other.
The loss of possibility: scientisation of death and the special case of early miscarriage
Authors: Frost Julia , Bradley Harriet , Levitas Ruth , Smith Lindsay , Garcia Jo 
Published: August 2010

AbstractThis paper explores the special nature of bereavement in the case of first trimester miscarriage. It is theoretically informed by the sociological literature concerning death and bereavement and is empirically grounded in interviews with 79 women. We argue that the ‘scientisation of death’ in modern societies contributes to the uncertainty and isolation which distinguish early miscarriage as a unique form of loss. In the absence of clear cultural scripts to draw upon, many women interviewed gave meaning to their loss as ‘what might have been’ or what we call ‘the loss of possibility’. Some women juxtaposed the failure of their pregnancy with that of modern medicine either to prevent the loss or provide a credible explanation for their miscarriage.Little research has been conducted in this area, since the pioneering work of Lovell (1983) and Cecil (1984). Our research draws on one of the largest and most systematic bodies of data ever collected on early miscarriage, and provides continued evidence of the traumas of miscarriage. The strategies employed by women to make sense of, and come to terms with, their experience of miscarriage are explored, employing a typology of pre‐modern, modern and postmodern responses.
Health, morality, and infant feeding: British mothers’ experiences of formula milk use in the early weeks
Authors: Lee Ellie 
Published: August 2010

AbstractThe way mothers feed their babies is, internationally, the subject of research, health policy initiatives, and popular discussion, which commonly affirm the mantra ‘breast is best’. On one level, this mantra reflects scientific evidence about nutrition and maternal and infant health. From a socio‐cultural perspective, the pro‐breastfeeding message has, however, been considered an aspect of morality, which influences maternal identity in important ways. This article explores this idea. It does so primarily by reporting and discussing some findings from a study about British mothers’ experiences of using formula milk for infant feeding. The paper begins by contextualising this discussion by briefly outlining some aspects of the construction of infant feeding as a social problem in Britain, focusing in particular on the influence of ‘the new paradigm of health’.
Choosing embryos: ethical complexity and relational autonomy in staff accounts of PGD
Authors: Ehrich Kathryn , Williams Clare , Farsides Bobbie , Sandall Jane , Scott Rosamund 
Published: August 2010

AbstractThe technique of preimplantation genetic diagnosis (PGD) is commonly explained as a way of checking the genes of embryos produced by IVF for serious genetic diseases. However, complex accounts of this technique emerged during ethics discussion groups held for PGD staff. These form part of a study exploring the social processes, meanings and institutions that frame and produce ‘ethical problems’ for practitioners, scientists and others working in the specialty of PGD in the UK. Two ‘grey areas’ raised by staff are discussed in terms of how far staff are, or in the future may be, able to support autonomous choices of women/couples: accepting ‘carrier’ embryos within the goal of creating a ‘healthy’ child; and sex selection of embryos for social reasons. These grey areas challenged the staff's resolve to offer individual informed choice, in the face of their awareness of possible collective social effects that might ensue from individual choices. We therefore argue that these new forms of choice pose a challenge to conventional models of individual autonomy used in UK genetic and reproductive counselling, and that ‘relational autonomy’ may be a more suitable ethical model to describe the ethical principles being drawn on by staff working in this area.
A genetic future for coronary heart disease?
Authors: Weiner Kate , Martin Paul 
Published: August 2010

AbstractThis paper is concerned with changing conceptions of genetic disease. It is based on an analysis of biomedical literature and focuses on the treatment of coronary heart disease (CHD) in four published commentary papers. The aim of this analysis is to explore the ways in which CHD is constructed as genetic and the place of genetic discourses in the wider set of ideas that circulate about the disease. This analysis is then used to consider some of the claims of the geneticisation thesis (Lippman 1991, 1992). The analysis suggests that a genetic vision for understanding and managing CHD has emerged, which has many of the hallmarks of the geneticisation imagined by Lippman. However, a number of alternative and competing models of CHD are also supported within the biomedical discourse. These are related to the different disciplines with a stake in the field of CHD, and their struggles for authority. In conclusion, it is suggested that the geneticisation thesis, as a universal claim, is at odds with the diffuse and distributed nature of biomedical knowledge and practice. Rather than analysing geneticisation in a literal way, it may be more fruitful to see the thesis, itself, as a form of boundary work (Gieryn 1983).
Like a prayer: the role of spirituality and religion for people living with HIV in the UK
Authors: Ridge Damien , Williams Ian , Anderson Jane , Elford Jonathan 
Published: August 2010

AbstractOver 40,000 people are now living with diagnosed HIV in the UK. There is, however, uncertainty about how people with HIV use religion or spirituality to cope with their infection. Adopting a modified grounded theory approach, we analysed individual and group interviews with the people most affected by HIV in the UK: black African heterosexual men and women and gay men (mostly white). For the majority of black African heterosexual men and women in our study, religion was extremely important. We found that gay men in the study were less religious than black Africans, although many were spiritual in some way. Black African individuals constructed their spiritual narratives as largely Christian or collective, while gay men described more individualistic or ‘New Age’ approaches. We developed a six‐level heuristic device to examine the ways in which prayer and meditation were deployed in narratives to modulate subjective wellbeing. These were: (i) creating a dialogue with an absent counsellor; (ii) constructing a compassionate ‘life scheme’; (iii) interrupting rumination; (iv) establishing mindfulness; (v) promoting positive thinking, and (vi) getting results. That people with HIV report specific subjective benefits from prayer or meditation presents a challenge to secular healthcare professionals and sociologists.
Pierre Bourdieu and transformative agency: a study of how patients in Benin negotiate blame and accountability in the context of severe obstetric events
Authors: Béhague Dominique P. , Kanhonou Lydie G. , Filippi Véronique , Lègonou Solange , Ronsmans Carine 
Published: August 2010

AbstractThis paper explores the social and institutional processes that constrain and enable obstetric patients in Benin to critically evaluate quality of healthcare and to stimulate positive changes in the health system. Based on qualitative data collected as part of a hospital auditing system, the paper analyses semi‐structured patient feedback interviews and their function as a primary mechanism through which critical patient evaluation can develop constructively. Using a Bourdieuan framework, we explore the dynamic social conditions that give rise to transformative agency and institutional change. Our results show that hospitals are often permeated with the habitus of employment, kinship and reproductive social fields, through which a number of social, economic and healthcare conflicts, power struggles and blame‐inducing interactions emerge. These conflicts generally serve to keep patients quiescent and passive when it comes to developing critical statements of quality of care. In a subset of cases, however, these conflicts are transformed by patients and their family members into opportunities for modifying the values and practices of each habitus in new and creative ways. The active negotiation of social conflict and blame enabled a minority of patients actively to divert blame from themselves and to develop and maintain critical healthcare evaluations.
Wellbeing and empowerment: the importance of recognition
Authors: Fisher Pamela 
Published: August 2010

AbstractHealth and wellbeing are now located within a policy framework that emphasises the empowerment of the individual ‘consumer’. Within this paradigm, empowerment is writ large and wellbeing is seen as a ‘civic duty’. The role of the health and social care services has been identified as one of enabling service users to promote their own wellbeing. In this paper, it is argued that dominant narratives relating to ‘achievement’ and ‘normality’ may result in forms of ‘misrecognition’ that act to undermine the positive sense of self that is crucial for self‐empowerment. It is suggested that while the parents of disabled babies often act reflexively to create empowering life narratives within the private sphere, this is not always facilitated by their encounters with health and social care organisations where neo‐liberal ideas and biomedical narratives, based on a modernist view of identity as individual and existing prior to society, mean that parents and children are attributed ‘deficient’ identities in ways that undermine empowerment. With reference to ‘the politics of recognition’, it is argued that services that seek to empower must value diversity and alterity whilst respecting human dependency on intersubjective recognition.
Holistic sickening: breast cancer and the discursive worlds of complementary and alternative practitioners
Authors: Sered Susan , Agigian Amy 
Published: August 2010

AbstractThis paper introduces the concept of holistic sickening to the sociological literature on illness narratives. Drawing on interviews with 46 Boston‐area complementary and alternative medicine (CAM) practitioners who treat breast cancer patients, we found that the CAM practitioners redefine their patients’ breast cancer diagnoses in ways that expand and transform their illness, sometimes into a lifetime journey. The practitioners, for the most part, espouse broad and complex etiological frameworks that help give meaning to the woman's cancer. They tend to speak about breast cancer as a symptom of problems that exceed the cancer itself, at times suggesting that women are responsible, to some extent, for their own breast cancer. The practitioners articulate holistic philosophies that describe healing as open‐ended with correspondingly expansive definitions of what it means to be healed, rarely articulating clear ways of conceptualising or measuring the efficacy of their own treatments. Their use of expansive and detailed etiological frameworks alongside vague and unelaborated efficacy frameworks make up the holistic sickening phenomenon described in this paper.
Collective memory, candidacy, and victimisation: community epidemiologies of breast cancer risk
Authors: Salant Talya , Gehlert Sarah 
Published: August 2010

AbstractCollectively shared ideas of community may be equally relevant for the study of health disparities as quantifying the relationship between community structures and health. Data from focus groups (N = 18) that explored understandings of breast cancer and breast cancer risk in African American neighbourhoods revealed three conceptual domains where shared ideas of community informed responses: collective memory, community candidacy, and community victimisation by external aggressors. Reading the focus group responses in terms of these domains identified perceptions of risk and of candidacy that may be overlooked by individualised or quantitative approaches to studying breast cancer risk perceptions and related behaviours. These include novel perceived risks, such as the ‘risk of knowing’, as well as community‐level constructions of breast cancer candidacy. ‘Lay epidemiologies’ of breast cancer within this population might therefore be better understood as ‘community epidemiologies’, where community is central to the interpretation and operationalisation of breast cancer risk. Paying attention to such community epidemiologies of breast cancer provides theoretical insights for studying breast cancer disparities and risk perceptions as well as useful guidance for designing interventions.