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Major service change in healthcare – whereby the distribution of services is reconfigured at a local or regional level - is often a contested, political and poorly understood set of processes. This paper contributes to the theoretical understanding of major service change by demonstrating the utility of interpreting health service reconfiguration as a biopolitical intervention. Such an approach orients the analytical focus towards an exploration of the spatial and the population – crucial factors in major service change. Drawing on a qualitative study from 2011–12 of major service change in the English NHS combining documentary analyses of historically relevant policy papers and contemporary policy documentation (n = 125) with semi-structured interviews (n = 20) we highlight how a particular 'geography of stroke' in London was created building upon multiple types of knowledge: medical, epidemiological, economic, demographic, managerial and organisational. These informed particular spatial practices of government providing legitimation for the significant political upheaval that accompanies NHS service reconfiguration by problematizing existing variation in outcomes and making these visible. We suggest that major service change may be analysed as a 'practice of security' – a way of redefining a case, conceiving of risks and dangers, and averting potential crises in the interests of the population. • Foucault's work on biopolitics is applied to analyse major service change. • The reconfiguration of stroke services in London is explored. • Empirical and theoretical implications are discussed. [ABSTRACT FROM AUTHOR]

Drawing on village-based data from Nepal, this paper explores the transferability of the Integrated Behavioural Model for Water, Sanitation and Hygiene (IBM-WASH) to the clean cooking sector and its potential to elucidate how barriers to improved cookstove adoption and sustained use intersect at different scales. The paper also explores the potential of IBM-WASH, behaviour settings theory and domestication analysis to collectively inform effective behaviour change techniques and interventions that promote both adoption and sustained use of health-promoting technologies. Information on cookstove use in the community since 2012 enables valuable insights to be gained on how kitchen settings and associated cooking behaviour were re-configured as homes and stoves were re-built following the April 2015 earthquake. The methodological approach comprised of semi-structured interviews, focus group discussions, direct observation and household surveys. The findings indicated that the IBM-WASH framework translated well to the improved cookstove sector, capturing key influences on clean cooking transitions across the model's three dimensions (context, psychosocial and technology) at all five levels. Understandings gained from utilising IBM-WASH were enhanced – especially at the individual and habitual levels – by domestication analysis and settings theory which elucidated how different cooking technologies were incorporated (or not) within physical structures, everyday lives and routine behaviour. The paper concludes that this combination of approaches has potential applicability for initiatives seeking to promote improved environmental health at community-wide scales. • Transferability of IBM-WASH to the cookstove sector is explored for the first time. • Data from post-earthquake Nepal is used to test this transferability. • We demonstrate that the framework translates well to the cookstove sector. • Findings from IBM-WASH are enhanced by domestication analysis and settings theory. • This combination of approaches has broader applicability for health initiatives. [ABSTRACT FROM AUTHOR]

Abstract: This paper reports on an exploratory study of intra-organisational knowledge brokers working within three large acute hospitals in the English National Health Services. Knowledge brokering is promoted as a strategy for supporting knowledge sharing and learning in healthcare, especially in the diffusion of research evidence into practice. Less attention has been given to brokers who support knowledge sharing and learning within healthcare organisations. With specific reference to the need for learning around patient safety, this paper focuses on the structural position and role of four types of intra-organisational brokers. Through ethnographic research it examines how variations in formal role, location and relationships shape how they share and support the use of knowledge across organisational and occupational boundaries. It suggests those occupying hybrid organisational roles, such as clinical-managers, are often best positioned to support knowledge sharing and learning because of their ‘ambassadorial’ type position and legitimacy to participate in multiple communities through dual-directed relationships. [Copyright &y& Elsevier]

This paper examines how parents of children diagnosed with autism resist the medicalization of their children's behavior. Drawing on video and ethnographic data collected over four years of fieldwork at a clinic for developmental disorders, the paper distinguishes two orders of practice – that of the clinic and that of the family – and argues that behavior which is interpreted as disordered in the clinic may be seen as ordinary in the home. These different interpretations reflect and renew distinct orders of sensemaking in the clinic and home, and parents may mobilize familial knowledge of the child to counter the medicalization of specific behavior patterns, even where they otherwise accept an autism diagnosis. In showing how medicalization and labelling are achieved and resisted in the mundane details of social interaction, the paper contributes to studies of diagnosis, disability, and deviance. Further, the myriad ways parents and clinicians contest which regions of a child's behavior get medicalized – i.e. which behavioral patterns are labeled disordered – present a challenge to binary conceptions of medicalization, recommending instead a more nuanced model of medicalization as a multi-dimensional continuum: more or less, rather than either-or. • The interaction order of the clinic medicalizes behavior that may be seen as benign in other settings. • Parents resist medicalization of children's behavior by drawing on personal knowledge of the child. • Medicalization is not all or nothing, but is negotiated at the level of individual behavior. • Even where a diagnosis is accepted, parents may reject the medicalization of specific behaviors. • Parents can reveal the sensibility of children's behavior in which clinicians see only deficits. [ABSTRACT FROM AUTHOR]

Abstract In this paper we examine how doctor and patient coordinate actions in interaction towards the smooth accomplishment of the medical visit. Such coordination entails primarily the management of time and praxis, i.e. the apportionment of time to the tasks to be completed during the visit; and it is not an easy enterprise, for a number of reasons: 1) the tasks to be carried out during the visit are not familiar in equal measure to doctor and patient; 2) the extent of attention to be devoted to each task cannot be fully determined in advance but requires ongoing judgment and calibration; 3) generally, the timeframe of the visit is relatively limited. Our ethnographic and conversation analytic study of oncological visits shows that doctor and patient rely on a range of semiotic resources to achieve mutual understanding and coordinated actions. In particular, our analysis has identified textual artifacts and metapragmatic utterances as key semiotic components in the coordination and negotiation of the temporal trajectories and courses of actions that constitute and traverse the oncology visit. Highlights • The structuring of time and activity in oncology visits was studied. • Ethnographic observation and conversation analysis of videorecordings were carried out. • The structuring of time and activity is a joint accomplishment by doctor and patient. • Textual artifacts and metapragmatic utterances are the key semiotic resources used. • Effective management of visits' timing may be more beneficial than having more time. [ABSTRACT FROM AUTHOR]

Abstract: There is increasing interest in using electronic mail and other electronic health technologies (e-health technologies) in patient follow-ups. This study sheds light on patients’ reception of provider-initiated e-health in their everyday environments. In a research project carried out in Norway (2005–2007), an electronic address for a hospital dermatology ward was offered to 50 patient families for improved access to expert advice from the patients’ homes. Drawing on semi-structured interviews with 12 families, this paper explores how the electronic address was integrated into everyday health practice. The research illuminates how the electronic address did not only represent changes related to treatment procedures and frequency or nature of expert contact; it was also important to other practices in the everyday lives of the families of patients with chronic illness. Once in place on the patients’ computers, the electronic address was ascribed at least four different roles: it was used as the intended riverbed for a flow of information, but also as a safety alarm, as a shield to the medical gaze and as a token of competence in care and parenting. The multiplicity in use and reception of an electronic address in patient settings illustrates the need to include patients’ everyday practices in current professional and political discussions of e-mail and other e-health technologies. Thus this paper argues that there is a need for research on electronic patient–provider communication that moves beyond frequency of use and questions on how technology will affect medical encounters. Social science equally needs to investigate how provider-initiated e-health technologies gets involved in patients’ moral and social performance of health and illness in everyday life. [Copyright &y& Elsevier]

Abstract: Disability is as much a factor in interactional dynamics as ethnicity, age, gender or sexuality, and therefore its impact on the processes around qualitative research warrants much more systematic attention. Disabled researchers are not confined to disability studies research, although most accounts of the impact of disability on the research process have, thus far, been undertaken within this field. This paper moves beyond this narrow focus to consider the impact of disabled identities and the embodied experiences of impairment on studies involving, primarily, non-disabled people. By reflecting on our experiences as visibly disabled researchers, we highlight some of the practical, ethical and conceptual dilemmas we encountered. Impairments may assist rapport building with participants, but also introduce complex dilemmas concerning whether, when and how to disclose them, and the consequences of doing so. We highlight the centrality of the visibility of the disabled body in mediating these dilemmas, and its part in constraining our responses to them. While we value our commitment to positive readings of disability, we demonstrate that disabled researchers nevertheless undertake research in contexts where disability is assigned meanings disabled people may not share. We argue that all researchers should attend to their own ‘body signifiers’ (whether in relation to ethnicity, wealth, gender, age etc.) and embodied experiences of research processes, as these are integral to research outcomes, the ethics of research, and are a means by which to address power differentials between researcher and participant. This paper addresses a gap in the literature, using our experiences of research to highlight the negotiations and dilemmas faced by visibly disabled researchers. Negotiations of identity prompted by the disabled body in the research process require consideration and should not be ignored. [Copyright &y& Elsevier]

Abstract: Needle phobia is a relatively common condition that, because it involves fear of a clinical procedure, often deals a ‘double blow’ to sufferers. Not only can it affect their general health care seeking behaviors (with avoidance potentially having serious health implications), if and when they present for health care, it often causes them significant physical and mental distress. This paper reports on a specific type of therapeutic practice that health professionals use when injecting their clients who have (undiagnosed) needle phobia, aimed at preventing, or momentarily relieving, their negative experiences. In-depth interviews with ten nurses and two doctors explore their often spontaneous use of visualization techniques which, involving a strong and varied emphasis on place, are highly geographical. Three emerging themes provide focused insights into visualization; breadth and forms, techniques and approaches, instinct and intuition. The paper concludes with considerations of practice advancement and future research. [Copyright &y& Elsevier]

Abstract: Involuntary infertility and induced abortion exist on opposite sides of the spectrum: the first being the unwanted loss of childbearing potential while the second is the intentional termination of pregnancy. However, this paper proposes that these two poles of pregnancy loss are in fact related in Yoruba society, Nigeria. This argument is supported by qualitative and quantitative data drawn from an applied research project in communities and health institutions of Lagos State, from 1996 to 1999, where a total of 693 women recounted 1114 personal abortion experiences, and 233 women shared their experiences of fertility problems. Study statistics show that 37% of secondary infertility was most probably the result of induced abortion and that half of women with abortion complications interviewed in a referral hospital will have fertility problems. This paper provides insight into the reasons why single and married women decide to abort, and use unsafe methods, despite awareness of the serious health risks, including infertility. This is paradoxical given that fear of infertility is a major reason why women do not use modern contraceptives when trying to prevent unwanted pregnancy. By analysing the relations between infertility and abortion within the socio-cultural, economic, and services-related structures that influence women’s decisions, this paper suggests ways of addressing the problems related to both types of pregnancy loss. [Copyright &y& Elsevier]

Using conversation analysis, this paper investigates when patients exercise their right to refuse treatment in neurology outpatient consultations recorded in the UK's National Health Service in 2012 (n = 224). NHS patients have a right to refuse treatment. However, there are good reasons to suppose that this may be difficult to exercise in practice. We know that clinicians tend to pursue acceptance if it's not forthcoming and those studies that have tracked decision-making trajectories through to their outcomes have shown that clinicians typically convert resistance to acceptance. By contrast, I show that, in 35/40 (87.5 %) cases in which patients sought to refuse treatments made available by a neurologist, they left without a prescription or referral. This paper seeks to explain this apparently anomalous finding. Starting with an example of what I expected to find – a 'duel' that ends with the neurologist persuading the patient to accept treatment – I show that this is, in fact, the exception. By contrast, most of the (attempted) refusals are collaborative, occurring after the neurologist has initiated decision-making in a way that designedly foregrounds the patients' views as the basis for deciding. I show also that, having done so, the neurologists typically continue to treat the decision as subject to the patient's preferences. Thus, the trajectories in my collection – despite including attempts to refuse treatment – do not typically become duels. Rather, patients are refusing treatment in a sequential context that facilitates making their own decision. • Enacting the right to refuse treatment can be difficult. • Surprisingly, most attempted treatment refusals were successful. • Refusals were mostly made when clinicians explicitly invited patients' views. • Clinicians usually did not try to persuade patients if they'd sought their views. • Clinicians appear to be balancing patient choice with their duty of care. [ABSTRACT FROM AUTHOR]

Abstract: This paper concentrates on controversies about children''s consent, and reviews how children''s changing status as competent decision makers about healthcare and research has gradually gained greater respect. Criteria for competence have moved from age towards individual children''s experience and understanding. Uncertain and shifting concepts of competence and its identification with adulthood and childhood are examined, together with levels of decision-making and models for assessing children''s competence. Risks and uncertainties, methods of calculating the frequency and severity of risks, the concept of ‘therapeutic research’ and problems of expanding consent beyond its remit are considered. The paper ends by considering how strengths and limitations in children''s status and capacities to consent can be mirrored in researchers’ and practitioners’ own status and capacities. Examples are drawn from empirical research studies about decision-making in healthcare and research involving children in the UK. [Copyright &y& Elsevier]

Abstract: This paper situates discussion of the ethics of ethnographic research against the background of a theoretical and methodological debate about the relationship between ethics and method, and about the relationships between research methods and their objects. In particular, the paper investigates the implications of folding together the ethical and the empirical in research and argues that this requires the development of new ethico-ethnographic methods for the investigation of ethico-moral objects. The paper falls into three main parts. The first considers calls for what has come to be known as empirical ethics, that is, for a more empirically informed bioethics, by way of an exploration of the integration of ethnographic methods in bioethics, and concludes that approaches which see the ethical and the empirical as ‘complementary’ do not do justice to the methodological implications of enfolding the ethical and the ethnographic. The second part juxtaposes this with calls for the integration of ethics in ethnography and, similarly, argues that the enfolding of the ethical and the empirical in ethnography calls for the development of new methods. The paper goes on to problematise the ‘negotiational’ approaches to informed consent preferred by many ethnographers, arguing that the concept of negotiation, rather than offering a solution to the problem of consent, is itself ethically complex and in need of analysis. The paper argues that, in the context of ethnographic research, the possibility of negotiational forms of consent depends upon engagement between researchers and researched, with unavoidably ‘ethical’ concepts such as ‘respect’, ‘recognition’, ‘dignity’, ‘justice’ and so on, and that this poses methodological challenges to ethnography. The paper''s third section explores the implications of these arguments for research practice, using The Genethics Club as an example. [Copyright &y& Elsevier]

Abstract: In this paper we examine the application of informed consent to ethnographic research in health care settings. We do not quarrel with either the principle of informed consent or its translation into the requirement that research should only be carried out with consenting participants. However, we do challenge the identification of informed consent with the particular set of bureaucratic practices of ethical review which currently operate in Canada, the US and elsewhere. We argue that these anticipatory regulatory regimes threaten the significant contribution of ethnographic research to the creation of more efficient, more effective, more equitable and more humane health care systems. Informed consent in ethnographic research is neither achievable nor demonstrable in the terms set by anticipatory regulatory regimes that take clinical research or biomedical experimentation as their paradigm cases. This is because of differences in the practices of ethnographic and biomedical research which we discuss. These include the extended periods of time ethnographers spend in the research setting, the emergent nature of ethnographic research focus and design, the nature and positioning of risk in ethnographic research, the power relationships between researchers and participants, and the public and semi-public nature of the settings normally studied. Anticipatory regulatory regimes are inimical to ethnographic research and risk undermining the contribution of systematic inquiry to understanding whether institutions do what they claim to do, fairly and civilly and with an appropriate mobilisation of resources. We do not suggest that we should simply ignore ethics or leave matters to the individual consciences of researchers. Rather, we need to develop and strengthen professional models of regulation which emphasise education, training and mutual accountability. We conclude the paper with a number of suggestions about how such professional models might be implemented. [Copyright &y& Elsevier]

Abstract: In this paper, we consider some of the challenges associated with the ethical need to conduct locally relevant international health research. We examine a cervical cancer research initiative in a resource-poor community in South Africa, and consider the extent to which this research was relevant to the expressed needs and concerns of community members. Results from informal discussions and a series of 27 focus groups conducted in the community provide insight into the community''s needs and concerns, and its recommendations for how the research could be made more relevant to the community. We discuss these findings in the context of recent theory and literature on the role of community engagement in promoting local relevance and responsiveness in community-based health research. We anticipate that the paper''s findings may help international health researchers better identify and assess the challenges of conducting locally relevant research across major global gaps in wealth and health. [Copyright &y& Elsevier]

Abstract: The paper describes a model of moral reasoning used to guide the conduct of health researchers and recommends that this model be applied in health promotion. It argues that this model is a more appropriate and sound way of thinking about the means and ends of health education, with implications for both research and practice. When faced with ethical dilemmas about the most appropriate course of action in health research, investigators and bioethicists conduct normative analyses to identify good reasons for choosing one option over another. These reasons provide the grounds for determining what one should do, and for changing past practices in light of new moral considerations. Since the research community seems to think that this is a good way to guide and change their own behavior, this model of moral reasoning appears to have relevance and potential application to the field of health education, which engages in analogous processes of seeking to inform and change the behaviors of the lay public. The article sets this approach in the context of a humanistic understanding of human motivation and presents two case examples to illustrate the process of moral reasoning. The humanistic model outlined here helps to explain why health promotion has not made much progress in developing effective behavior change programs and it offers a more promising prospect for demonstrating success by identifying a broader range of relevant outcomes. The paper concludes by recommending that greater attention be paid to the ethical dimensions of human agency in order to develop a more coherent body of knowledge to advance both research and practice in health promotion. [Copyright &y& Elsevier]

This paper explores governance and control in operating room nurses' clinical practice. Traditionally, operating room nurses have been portrayed as 'handmaidens' to the surgeons, a position which implies that nurses' bodies and the knowledge they use in practice are sites of discursive control by others. This paper unsettles this understanding by showing how operating room nurses studied ethnographically in an Australian setting are both disciplined by and actively shape practice through knowing surgeons' technical requirements for surgery, through inscribing them in discourses of time, and through having deep knowledge of the surgeons' 'soul'. We argue that as a form of governance, nurses' knowledge of surgeons is a subjugated form of knowledge, located low down on a hierarchy of knowledges. Furthermore, as a form of governance that has previously been unarticulated in the literature, it transcends the traditional lines of authority and control in the nurse-doctor relationship. The data in this paper are drawn from an ethnographic study that explored a range of nurse-nurse and nurse-doctor communication practices in operating room nursing. [ABSTRACT FROM AUTHOR]

There has so far only been little research attention given to how families actively engage in promoting their health in everyday life. In this paper a theoretical framework is proposed for studies of the ‘health-promoting family’ with particular focus on children''s health and well-being. This paper sets out a conceptual model for understanding how the family can play a part in promoting both the health of children and children''s capacities as health-promoting actors. It draws on contemporary social science approaches to health, the family and children, suggesting a new emphasis on the family''s ecocultural pathway, family practices and the child as a health-promoting actor. [Copyright &y& Elsevier]

Interest in how qualitative health research might be used more widely to inform health policy and medical practice is growing. Synthesising findings from individual qualitative studies may be one method but application of conventional systematic review methodology to qualitative research presents significant philosophical and practical challenges. The aim here was to examine the feasibility of synthesising qualitative research using qualitative methodology including a formative evaluation of criteria for assessing the research to be synthesised. Ten qualitative studies of adult patients’ perspectives of diabetes were purposefully selected and questions proposed by the critical appraisal skills programme (CASP) adapted and used to assess papers prior to synthesis. Each study was reviewed independently by two experienced social scientists. The level of agreement between reviewers was determined. Three papers were excluded: one because it turned out not to be qualitative research, one because the quality of the empirical work was poor and one because the qualitative findings reported were also recorded in another paper already included. The synthesis, which had two distinct elements, was conducted using the meta-ethnographic method. Firstly, four papers containing typologies of patient responses to diabetes were synthesised. Secondly, six key concepts were identified from all seven papers as being important in enabling a person with diabetes to achieve a balance in their lives and to attain a sense of well-being and control. These included: time and experience, trust in self, a less subservient approach to care providers, strategic non-compliance with medication, effective support from care providers and an acknowledgement that diabetes is serious. None of the studies included in the synthesis referenced any of the early papers nor did they appear to have taken account of or built upon previous findings. This evaluation confirmed that meta-ethnography can lead to a synthesis and extension of qualitative research in a defined field of study. In addition, from it a practical method of qualitative research assessment evolved. This process is promising but requires further testing and evaluation before it could be recommended for more widespread adoption. [Copyright &y& Elsevier]

Governments of many developing countries, including those in Sub-Saharan Africa have embraced the community-based health insurance schemes phenomenon under the health sector reforms with optimism. Ghana has introduced a National Health Insurance Scheme, which is amalgamated with social health insurance and community-based health insurance schemes. The aim of this study was to explore the role of the Ghana government and community in the scaling-up and sustainability of mutual health organisations. Four district mutual health insurance schemes were selected using geographical locations, among other criteria, as case studies. Data were gathered through interviews and documentary/literature review. The findings of the empirical study were analysed and interpreted using social policy and community field theories. The findings of the paper suggest that in order to ensure their effective scaling up and maintain overall sustainability, there is the need for some form of government regulation and subsidy. However, since government regulation cannot work without the acceptance of the community, there is the need to integrate these actors in policy formulation. [ABSTRACT FROM AUTHOR]

Systematic differences in the ways that people use and interpret response categories (differential item functioning, DIF ) can introduce bias when using self-assessments to compare health or quality of life across heterogeneous groups. This paper reports on an exploratory analysis involving the use of anchoring vignettes to identify DIF in a commonly used measure for assessing health-related quality of life - namely the EQ-5D. Using data from a bespoke (i.e. custom) survey that recruited a representative sample of 4300 respondents from the general Australian population in 2014 and 2015, we find that the assumptions of response consistency (RC) and vignette equivalence (VE) hold in a sub-sample of respondents aged 55–65 years (n = 914), which demonstrates that vignettes can appropriately identify DIF in EQ-5D reporting for this age group. We find that the EQ-5D is indeed subject to DIF, and that failure to account for DIF can lead to conclusions that are misleading when using the instrument to compare health or quality of life across heterogeneous groups. We also provide several important insights in terms of the identifying assumptions of RC and VE. We conclude that the implications of DIF could be of considerable importance, not only for outcomes research, but for funding decisions in healthcare more broadly given the strong reliance on patient-reported outcome measures in economic evaluations for health technology assessment. [ABSTRACT FROM AUTHOR]

Different discourses that co-exist within the world of patient and public involvement in health and social care mirror a tangle of historical, social, political and theoretical roots. These range from the radical activism, born of civil rights movements, to a more passive model in which patients are the recipients of information. This paper explores the concept of ‘representation’ and the ways the concept is used by people serving as ‘patient’ or ‘lay’ representatives in a range of roles within research projects, funding bodies and academic institutions. We address the issue of why the representativeness of those involved is contestable. Drawing on qualitative research and engaged practice as well as on literature from social and political sciences we question how people conceptualise their own and their fellows' acts of representation. In doing this we identify nine different conceptualisations of what it is to represent and use these to explore how judgements are made about what can count as legitimate forms of representation. [ABSTRACT FROM AUTHOR]

Increasing attention has been paid in recent years to the problem of “too much medicine”, whereby patients receive unnecessary investigations and treatments providing them with little or no benefit, but which expose them to risks of harm. Despite this phenomenon potentially constituting an inefficient use of health care resources, it has received limited direct attention from health economists. This paper considers “too much medicine” as a form of overconsumption, drawing on research from health economics, behavioural economics and ecological economics to identify possible explanations for and drivers of overconsumption. We define overconsumption of health care as a situation in which individuals consume in a way that undermines their own well-being. Extensive health economics research since the 1960s has provided clear evidence that physicians do not act as perfect agents for patients, and there are perverse incentives for them to provide unnecessary services under various circumstances. There is strong evidence of the existence of supplier-induced demand, and of the impact of various forms of financial incentives on clinical practice. The behavioural economics evidence provides rich insights on why clinical practice may depart from an “evidence-based” approach. Moreover, behavioural findings on health professionals’ strategies for dealing with uncertainty, and for avoiding potential regret, provide powerful explanations of why overuse and overtreatment may frequently appear to be the “rational” choice in clinical decision-making, even when they cause harm. The ecological economics literature suggests that status or positional competition can, via the principal-agent relationship in health care, provide a further force driving overconsumption. This novel synthesis of economic perspectives suggests important scope for interdisciplinary collaboration; signals potentially important issues for health technology assessment and health technology management policies; and suggests that cultural change might be required to achieve significant shifts in clinical behaviour. [ABSTRACT FROM AUTHOR]

Culture is essential for humans to exist. Yet surprisingly little attention has been paid to identifying how culture works or developing standards to guide the application of this concept in health research. This paper describes a multidisciplinary effort to find consensus on essential elements of a definition of culture to guide researchers in studying how cultural processes influence health and health behaviors. We first highlight the lack of progress made in the health sciences to explain differences between population groups, and then identify 10 key barriers in research impeding progress in more effectively and rapidly realizing equity in health outcomes. Second, we highlight the primarily mono-cultural lens through which health behavior is currently conceptualized, third, we present a consensus definition of culture as an integrating framework, and last, we provide guidelines to more effectively operationalize the concept of culture for health research. We hope this effort will be useful to researchers, reviewers, and funders alike. [ABSTRACT FROM AUTHOR]

Crowdfunding involves raising money from large groups of individuals, often through the use of websites dedicated to this purpose. Crowdfunding campaigns aimed at raising money to pay for expenses related to receiving medical treatment are receiving increased media attention and there is evidence that medical crowdfunding websites are heavily used. Nonetheless, virtually no scholarly attention has been paid to these medical crowdfunding campaigns and there is no systematic evidence about how widely they are used and for what reasons, and what effects they have on the provision of medical care and individuals' relationships to their health systems. Ethical concerns have been raised in relation to these campaigns, focusing on issues for campaigners and donors such as exposure to fraudulent campaigns, loss of privacy, and fairness in how medical crowdfunding funds are distributed. Medical crowdfunding websites themselves have not been systematically studied, despite their significant influence on how these campaigns are developed and promoted. In this paper, we identify three very broad and pressing ethical questions regarding medical crowdfunding for social scientists to address and offer some preliminary insights into key issues informing future answers to each: Who benefits the most from medical crowdfunding and how does medical crowdfunding affect access to medical care; How does medical crowdfunding affect our understanding of the causes of inadequate access to medical care; and How are campaigner and donor privacy affected by website design? Our observations indicate the need for increased scholarly attention to the ethical and practical effects of medical crowdfunding for campaigners, recipients, donors, and the health system as a whole. [ABSTRACT FROM AUTHOR]

In recent years the academic landscape has been shifting and significantly affected by the introduction of an ‘impact agenda’. Academics are increasingly expected to demonstrate their broader engagement with the world and evidence related outcomes. Whilst different countries are at various stages along this impact journey, the UK is the first country to link impact to funding outcomes; here impact now accounts for 20% of an academic unit of assessment’s Research Excellence Framework (REF) result. This concept of ‘research impact’ implies that our work can effect change through one or more identifiable events in a direct, preferably linear and certainly measurable manner. In this paper, focusing on impact in social science, and policy-related impact in particular, we argue that such a cause and effect model is inappropriate. Furthermore that impact is not immediate or indeed linear within social science research. Drawing on recent work on alcohol and tobacco environments in Scotland we present a case study of impact, reflect on the process and respond to the challenges of moving beyond ‘business as usual’ public participation towards the measurement of outcomes. In doing so we critique the way in which ‘impact’ is currently measured and suggest a move towards an enlightenment model with greater recognition of process. [ABSTRACT FROM AUTHOR]

Racial disparities in outcomes of assisted reproductive technologies (ART) are well-documented, and evidence of racial disparities in other forms of fertility treatments has also been observed. To date, much of the research on these disparities has focused on individual-level causes. This paper contextualizes these disparities using the weathering hypothesis. Using the National Survey of Family Growth and exploratory analyses of the National Health and Nutrition Examination Survey, this study evaluates whether there is evidence of weathering among women of color seeking fertility treatments. The study finds inconsistent evidence of weathering among these groups. However, the study is limited by weaknesses in the available data. The paper demonstrates the promise and limits of the available data to answer empirical questions regarding disparities in fertility treatments that have spurred a national public health action plan and numerous commentaries from scholars and professional organizations. The paper concludes with a discussion of other possible causes of these disparities and a description of next steps needed in the field to better understand both the "under the skin" and social processes that underlie disparities in fertility treatment outcomes. • The weathering hypothesis is applied to race disparities in fertility treatments. • Evidence of weathering among treatment-seekers is inconsistent in two national surveys. • Expanded collection of data in national surveys is needed. • Continued development of social and institutional explanations is also necessary. [ABSTRACT FROM AUTHOR]

The consumption of tobacco, alcohol and ultra-processed foods and beverages drives the global noncommunicable disease (NCD) crisis in Pacific small island developing states (PSIDS). Addressing the commercial determinants of health (CDoH) requires policy coherence across government sectors; however, entrenched neoliberal ideologies that exhort self-regulation of markets and market actors impede such efforts. This paper aims to explore the roles ideas play in governing CDoH, through the analysis of causal ideas in multisectoral tobacco governance in Fiji and Vanuatu. An explorative, qualitative case study design was applied. Data collection relied primarily on in-depth interviews, of which 70 were conducted between 2018 and 2019. Data analysis was guided by a theory-informed analytical framework. Two causal ideas influence multisectoral tobacco governance in Fiji and Vanuatu. According to the idea of individual responsibility, high smoking prevalence is the consequence of individuals' unhealthy lifestyle choices; it nominates the Ministry of Health as the responsible actor to solve this issue by providing health education. In contrast, the idea of CDoH argues that harmful commodity industries drive the NCD epidemic, and the sectors that regulate these private actors should be kept in closer check to ensure that their policies are aligned with the objectives of public health. In Fiji and Vanuatu, the non-health government agencies are effectively excused from implementing multisectoral tobacco policies because the dominant idea of individual responsibility relieves them of any responsibility. The wider adoption of the idea of CDoH is needed in PSIDS to tackle the NCD crisis. • Causal ideas are used to identify responsible actors and solutions to the NCD crisis. • The idea of individual responsibility excuses non-health actors from multisectoral action. • The idea of commercial determinants of health (CDoH) promotes multisectoral policies. • In Fiji and Vanuatu the idea of individual responsibility dominates tobacco control. • The diffusion of the idea of CDoH is needed to tackle NCDs in Fiji and Vanuatu. [ABSTRACT FROM AUTHOR]

In this paper, we explore Indigenous perspectives of culture, place, and health among participants in a landmark Canadian Housing First initiative: At Home/Chez Soi (AHCS) project. Implemented from 2009 to 2013 in Winnipeg and four other Canadian cities, AHCS was a multi-city randomized control trial that sought to test the effectiveness of Housing First as a model for addressing chronic homelessness among people living with mental illnesses. As Winnipeg's homeless population is over 70% Indigenous, significant efforts were made to accommodate the culturally specific health, spiritual, and lifestyle preferences of the project's Indigenous participants. While a daunting challenge from an intervention perspective, Winnipeg's experience also provides a unique opportunity to examine how Indigenous participants' experiences can inform improved housing and mental health policy in Canada. In our study, conducted independently from, but with endorsement of the AHCS project, we utilized a case study approach to explore the experiences of the project's Indigenous participants. Data were collected by means of in-depth qualitative interviews with Indigenous participants (N = 14) and key informant project staff and investigators (N = 6). Our exploratory work demonstrates that despite relative satisfaction with the AHCS intervention, Indigenous peoples' sense of place in the city remains largely disconnected from their housing experiences. We found that structural factors, particularly the shortage of affordable housing and systemic erasure of Indigeneity from the urban sociocultural and political landscape, have adversely impacted Indigenous peoples' sense of place and home. [ABSTRACT FROM AUTHOR]

Health systems' responsiveness encompasses attributes of health system encounters valued by people and measured from the user's perspective in eight domains: dignity, autonomy, confidentiality, communication, prompt attention, social support, quality of basic amenities and choice. The literature advocates for adjusting responsiveness measures for reporting behaviour heterogeneity, which refers to differential use of the response scale by survey respondents. Reporting behaviour heterogeneity between individual respondents compromises comparability between countries and population subgroups. It can be studied through analysing responses to pre-defined vignettes – hypothetical scenarios recounting a third person's experience in a health care setting. This paper describes the first comprehensive approach to studying reporting behaviour heterogeneity using vignettes. Individual-level variables affecting reporting behaviour are grouped into three categories: (1) sociodemographic, (2) health-related and (3) health value system. We use cross-sectional data from 150 000 respondents in 64 countries from the World Health Organization's World Health Survey (2002–03). Our approach classifies effect patterns for the scale as a whole, in terms of strength and in relation to the domains. For the final eight variables selected (sex; age; education; marital status; use of inpatient services; perceived health (own); caring for close family or friends with a chronic illness; the importance of responsiveness), the strongest effects were present for education, health, caring for friends or relatives with chronic health conditions, and the importance of responsiveness. Patterns of scale elongation or contraction were more common than uniform scale shifts and were usually constant for a particular factor across domains. The dependency of individual-level reporting behaviour heterogeneity on country is greatest for prompt attention, quality of basic amenities and confidentiality domains. [ABSTRACT FROM AUTHOR]

The recent proliferation of strategies designed to increase the use of research in health policy (knowledge exchange) demands better application of contemporary conceptual understandings of how research shapes policy. Predictive models, or action frameworks , are needed to organise existing knowledge and enable a more systematic approach to the selection and testing of intervention strategies. Useful action frameworks need to meet four criteria: have a clearly articulated purpose; be informed by existing knowledge; provide an organising structure to build new knowledge; and be capable of guiding the development and testing of interventions. This paper describes the development of the SPIRIT Action Framework. A literature search and interviews with policy makers identified modifiable factors likely to influence the use of research in policy. An iterative process was used to combine these factors into a pragmatic tool which meets the four criteria. The SPIRIT Action Framework can guide conceptually-informed practical decisions in the selection and testing of interventions to increase the use of research in policy. The SPIRIT Action Framework hypothesises that a catalyst is required for the use of research, the response to which is determined by the capacity of the organisation to engage with research. Where there is sufficient capacity, a series of research engagement actions might occur that facilitate research use . These hypotheses are being tested in ongoing empirical work. [ABSTRACT FROM AUTHOR]

This paper explores social scientists' and humanities (SSH) scholars' integration within the academic medical research environment. Three questions guided our investigation: Do SSH scholars adapt to the medical research environment? How do they navigate their career within a culture that may be inconsistent with their own? What strategies do they use to gain legitimacy? The study builds on three concepts: decoupling, doxa, and epistemic habitus. Twenty-nine semi-structured interviews were conducted with SSH scholars working in 11 faculties of medicine across Canada. Participants were selected through purposeful and snowball sampling. The data were analyzed by thematic content analysis. For most of our participants, moving into medicine has been a challenging experience, as their research practices and views of academic excellence collided with those of medicine. In order to achieve some level of legitimacy more than half of our participants altered their research practices. This resulted in a dissonance between their internalized appreciation of academic excellence and their new, altered, research practices. Only six participants experienced no form of challenge or dissonance after moving into medicine, while three decided to break with their social science and humanities past and make the medical research community their new home. We conclude that the work environment for SSH scholars in faculties of medicine does not deliver on the promise of inclusiveness made by calls for interdisciplinarity in Canadian health research. [ABSTRACT FROM AUTHOR]

Abstract: While the “social determinants of health” view compels us to explore how social structures shape health outcomes, it often ignores the role individual agency plays. In contrast, approaches that focus on individual choice and personal responsibility for health often overlook the influence of social structures. Amartya Sen's “capabilities” framework and its derivative the “health capabilities” (HC) approach attempts to accommodate both points of view, acknowledging that individuals function under social conditions over which they have little control, while also acting as agents in their own health and well-being. This paper explores how economic, social, and cultural resources shape the health capability of people with diabetes, focusing specifically on dietary practices. Health capability and agency are central to dietary practices, while also being shaped by immediate and broader social conditions that can generate habits and a lifestyle that constrain dietary behaviors. From January 2011 to December 2012, we interviewed 45 people with diabetes from a primary care clinic in Ontario (Canada) to examine how their economic, social, and cultural resources combine to influence dietary practices relative to their condition. We classified respondents into low, medium, and high resource groups based on economic circumstances, and compared how economic resources, social relationships, health-related knowledge and values combine to enhance or weaken health capability and dietary management. Economic, social, and cultural resources conspired to undermine dietary management among most in the low resource group, whereas social influences significantly influenced diet among many in the medium group. High resource respondents appeared most motivated to maintain a healthy diet, and also had the social and cultural resources to enable them to do so. Understanding the influence of all three types of resources is critical for constructing ways to enhance health capability, chronic disease self-management, and health. [Copyright &y& Elsevier]

Abstract: Over the last decade, the Brazilian alcohol industry – which for years has ignored alcohol problems – inaugurated responsible drinking programs (RDPs). This paper reports findings from an exploratory study that investigated the RDP-related activities of six leading alcohol companies in Brazil (three national, three transnational) focusing on program goals and components, target populations and evaluation methods. Interviews were conducted from October 2007 to February 2008 with nine key-informants, and 71 corporate documents were collected along with additional web information about the programs. Content analysis of interviews and institutional documents was used to identify the companies’ RDP activities. Three types of RDPs were found that focused respectively on institutional action, drinking and driving, and underage drinking. All three transnational firms were involved in RDPs, whereas national firms demonstrated limited involvement. The majority of RDPs were implemented using television. No targeted research appears to have been undertaken by the companies to assess the efficacy of the strategies in terms of changes in drinking behavior. The evidence for both national and transnational firms means that is difficult to confirm that the responsible drinking programs produced so far in Brazil have been undertaken to systematically reduce alcohol problems, or mainly as part of a public relations strategy to reduce criticism and potentially forestall government regulations (). [Copyright &y& Elsevier]

Abstract: Lay persons who are trained to conduct research in their own communities form an essential part of many research projects. However, the effects of conducting research in their own communities have not been adequately explored. This paper examines the experiences, perceptions, and challenges faced by a group of community researchers during their involvement in a research project that examined if, and how, the relationships between mothers and their adolescent daughters could be harnessed to develop a daughter-initiated cervical cancer intervention. Seven community researchers interviewed 157 mother-daughter pairs in Cape Town, South Africa. We examine the use of journaling as a tool to document the experiences of community researchers, and we consider how journaling may help the community-based researcher grapple with the research process, and, more broadly, what such journal content illustrates with respect to the nature and challenges of community-engaged health research. An analysis of the content of the journals provides a strong indication of how personal and intimate the research process can be for community researchers by virtue of the background that they bring into the process as well as the additional weight of the research process itself. The complexities of navigating dual and somewhat oppositional roles – the role of impartial scientist or researcher and the role of invested community person - has been both underestimated and insufficiently researched. [Copyright &y& Elsevier]

Abstract: The notion of developing resilience is becoming increasingly important as a way of responding to the social determinants of poor health, particularly in disadvantaged groups. It is hypothesized that resilient individuals and communities are able to ‘bounce back’ from the adversities they face. This paper explores the processes involved in building resilience as an outcome in relation to both quitting smoking and never smoking. The study involved 93 qualitative, oral-history interviews with participants from population groups with high and enduring smoking rates in Adelaide, Australia, and was essentially interested in how some people in these groups managed to quit or never start smoking in the face of adversities, in comparison to a group of smokers. Our key findings relate to what we call additive and subtractive resilience strategies, which focus on the practices, roles and activities that individuals either ‘took on’ or ‘left behind’ in order to quit smoking or remain abstinent. The theoretical lenses we use to understand these resilience strategies relate to biographical reinforcement and biographical reinvention, which situate the resilience strategies in a broader ‘project of the self’, often in relation to attempting to develop ‘healthy bodies’ and ‘healthy biographies’. [Copyright &y& Elsevier]

Abstract: Research into young people and healthy eating has focused on identifying the ‘barriers’ to healthy eating and on developing interventions to address them. However, it has tended to neglect the emotional, social and symbolic aspects of food for young people, and the roles food might play in adolescence. This paper explores these issues, reporting findings from a qualitative study which explored the meanings and values young people attached to food choices, particularly in school and peer contexts. As part of a larger study into young people’s relationships with food brands, 12 focus groups were conducted with young people aged 13–15 in the North East of England. The focus groups found that young people used food choices to help construct a desired image, as a means of judging others, and to signal their conformity with acceptable friendship and peer norms. Importantly, the findings suggested that the social and symbolic meanings associated with healthy eating conflicted with processes and values which are of crucial importance in adolescence, such as self-image and fitting in with the peer group. In other words, it was emotionally and socially risky to be seen to be interested in healthy eating. Interventions need not only to make healthy eating easier and more available, but also to address young people’s emotional needs for identity and belonging. [Copyright &y& Elsevier]

Abstract: United Kingdom (UK) funding to build human embryonic stem cell (hESC) derivation labs within assisted conception units (ACU) was intended to facilitate the ‘In-vitro fertilisation (IVF)-stem cell interface’, including the flow of fresh ‘spare’ embryos to stem cell labs. However, in the three sites reported on here, which received this funding, most of the embryos used for hESC research came from long term cryopreservation storage and/or outside clinics. In this paper we explore some of the clinical, technical, social and ethical factors that might help to explain this situation. We report from our qualitative study of the ethical frameworks for approaching women/couples for donation of embryos to stem cell research. Members of staff took part in 44 interviews and six ethics discussion groups held at our study sites between February 2008 and October 2009. We focus here on their articulations of social and ethical, as well as scientific, dimensions in the contingent classification of ‘spare’ embryos, entailing uncertainty, fluidity and naturalisation in classifying work. Social and ethical factors include acknowledging and responding to uncertainty in classifying embryos; retaining ‘fluidity’ in the grading system to give embryos ‘every chance’; tensions between standardisation and variation in enacting a ‘fair’ grading system; enhancement of patient choice and control, and prevention of regret; and incorporation of patients’ values in construction of ethically acceptable embryo ‘spareness’ (‘frozen’ embryos, and embryos determined through preimplantation genetic diagnosis (PGD) to be genetically ‘affected’). We argue that the success of the ‘built moral environment’ of ACU with adjoining stem cell laboratories building projects intended to facilitate the ‘IVF-stem cell interface’ may depend not only on architecture, but also on the part such social and ethical factors play in configuration of embryos as particular kinds of moral work objects. [Copyright &y& Elsevier]

Disabled young people have lower levels of participation in community life than nondisabled peers across a number of domains, including sporting activities, with profound implications for health, wellbeing and life course opportunities. Playing sport is a defining feature of identity for many young people in Aotearoa/New Zealand. Participation in sporting activities provides opportunities to develop competencies, to have fun and to compete, while also providing a sense of inclusion and peer group belonging. However, despite policies promoting inclusion of disabled young people in school and club sport, ableist attitudes and practices still function to exclude individuals who do not fit able-bodied norms. Drawing on recent 'assemblage thinking' in health and cultural geography, this paper explores the material, social and affective dimensions of 'enabling' and 'disabling' sporting assemblages, drawing on interviews with 35 disabled young people (12–25 years), parents and key informants. Many reported instances of demoralising exclusion in mainstream sporting activities. Some turned to adaptive sporting codes, designed for inclusion. In our exploration of participants' embodied experiences of enabling and disabling assemblages we employ assemblage theory to examine how social, affective and material forces and processes converge to either enable or constrain participation in local sporting activities. We close with a brief assessment of the implications of our analysis for ongoing efforts to promote inclusion for disabled youth in physical activity. • Disabled young people have lower sports participation levels than non-disabled peers. • Ableist attitudes and practices frequently exclude those who do not fit able-bodied norms. • Ableist attitudes produce social, cultural and physical barriers to participation. • Disability-specific sports can enable experiences of pleasure, freedom and inclusion. • Assemblage thinking has helped identify forces that enable/constrain participation. [ABSTRACT FROM AUTHOR]

Abstract: Conducting anthropological research into situations where public health interventions are ongoing raises a number of complex ethical issues. This paper addresses this by focusing on recent debate around questions of informed consent in research situations into health care in the ‘developing’ world. Two issues are developed: firstly, that of anthropological engagement with medical research trials; and secondly, how medical ethics debates have impinged upon and influenced anthropological ideas of ethics. Drawing on personal anthropological research into the implementation of the WHO prescribed tuberculosis control programme (DOTS) in the context of Nepal, I outline a number of ethical dilemmas and issues that arose. This research context included other ongoing research into DOTS implementation, as well as the local culture of health care provision. It involved moving between a number of sites and subject positions while interacting with heath professionals and patients. In conclusion, rather than prescribing ethical norms for researchers in such situations, I argue that we need more ethnographic examples and case studies as a means of thinking through the issues. I suggest that we need to reflect on both the ethical issues that arise when undertaking research into multifaceted public health interventions and into the situations where ethical guidelines and stipulations are formulated. The best place for this may be the Internet, where we increasingly see the conditions emerging for open dialogue. [Copyright &y& Elsevier]

Abstract: In this paper, I argue two main points. First, in premarital, sexual partnerships in rural Malawi, the purpose of money exchange extends beyond the alleviation of female partners’ economic constraints, and, second, by clarifying this broader purpose, it becomes possible to recognize where women exert control over their own sexual selves. These findings come from field observations and a rich set of in-depth interviews , bolstered on occasion by survey data, conducted with young women and men, aged 15–24 years, in the Balaka district in the southern region of the country. This research demonstrates that, contrary to typical expectations, money and gift transfers in sexual partnerships are part and parcel of the courting practices of young Malawian women and men. Transfers are as much about the expression of love and commitment as they are about meeting the financial needs of women or the acquisition of sex for men. Using narrative information to shed light on the semiotics of the sex–money link, these findings from Malawi offer a new perspective that broadens usual interpretations of transactional sex, the understanding of which is critical in fighting AIDS. [Copyright &y& Elsevier]

Abstract: This paper documents the process of implementing an Aboriginal-guided research approach to examining the lived experiences of Métis and First Nations peoples with diabetes in Winnipeg, Manitoba, Canada. A newly developed Aboriginal-oriented process framework for decolonizing research includes, in order of application, the six processes of rationalizing, enabling, facilitating, experiencing, accepting, and enacting decolonizing research. We review the key methodological elements of our research as a basis for discussing this decolonizing process framework that challenges traditional western ways of doing research, and requires the reformulation of underlying assumptions and methods. Aboriginal-grounded decolonizing research processes have implications for health researchers and health service providers who work with Indigenous peoples worldwide and are particularly useful for developing culturally grounded, community-based health promotion programs for Indigenous peoples suffering from health-related problems, including diabetes. [Copyright &y& Elsevier]

Abstract: Informed consent is a concept which attempts to capture and convey what is regarded as the appropriate relationship between researcher and research participant. Definitions have traditionally emphasised respect for autonomy and the right to self-determination of the individual. However, the meaning of informed consent and the values on which it is based are grounded in society and the practicalities of social relationships. As society changes, so too do the meaning and practice of informed consent. In this paper, we trace the ways in which the meaning and practice of informed consent has changed over the last 35 years with reference to four qualitative studies of parenting and children in the UK which we have undertaken at different points in our research careers. We focus in particular on the shifting boundaries between the professional and personal, and changing expressions of agency and power in a context of heightened perceptions of risk in everyday life. We also discuss developments in information and communication technologies as a factor in changing both the formal requirements for and the situated practicalities of obtaining informed consent. We conclude by considering the implications for informed consent of both increasing bureaucratic regulation and increasingly sophisticated information and communication technologies and suggest strategies for rethinking and managing ‘consent’ in qualitative research practice. [Copyright &y& Elsevier]

Abstract: In psychosocial and health-behavioral research, we often request that research participants provide information on significant individuals in their lives, so-called “third parties”. Recently there has been a greater recognition of privacy issues and risks in research pertaining to third parties. Reaction on the part of USA federal regulatory authorities to one study [Amber, D. (2000). Case at vcu bring ethics to forefront. , 14, 1], which attempted to collect survey data about the psychiatric history of respondents’ parents, has generated such concern and caution that longstanding practices for the collection of social determinants of health data are being questioned and are at risk of being disallowed by Institutional Review Boards (IRBs). In this paper, we consider third party research rights and risks from the perspective of social and behavioral scientists. Focusing on research about health and quality of life, we first discuss the rationale for research methods that elicit contextual information about family members, friends, co-workers, and other social contacts. Second, we discuss the matter of ‘privacy’ and its central role in the current third party rights and risks dialogue. Next, we describe ways to effectively manage third-party information, building upon current recommendations by the Office for Human Research Protections (OHRP) and Botkin''s [(2001). Protecting the privacy of family members in survey and pedigree research. Journal of the American Medical Association, 285(2), 207–211] treatment of the matter for survey and pedigree research. Lastly, we discuss the implications of applying these data collection and management strategies in social and behavioral research. We assert that these recommendations protect the rights of, and minimize the risks to, third parties without impeding social and behavioral health research. [Copyright &y& Elsevier]

Abstract: This paper examines the efforts of two complementary and alternative occupations, chiropractors and homeopaths, to move from the margins to the mainstream in health care in the province of Ontario. We use a variety of theoretical perspectives to understand how health occupations professionalize: the trait functionalist framework, social closure, the system of professions, and the concept of countervailing powers. The research traces the strategies that the leaders of the two groups are employing, as well as the resources they are able to marshal. These are analyzed within the context of the larger institutional and cultural environment. The data are derived from in-person interviews with 16 leaders (10 chiropractic and 6 homeopathic) identified through professional associations, teaching institutions and informants from the groups. The responses were analyzed with qualitative content analysis. We also used archival materials to document what the leaders were telling us. The data revealed four main strategies: (1) improving the quality of educational programs, (2) elevating standards of practice, (3) developing more peer reviewed research, and (4) increasing group cohesion. Although both groups identified similar strategies, the chiropractors were bolstered by more resources as well as state sanctioned regulation. The efforts of the homeopaths were constrained by scarce resources and the absence of self-regulation. In both cases the lack of strong structural support from government and the established health professions played an important role in limiting what was possible. In the future, it may be to the state''s advantage to modify the overall shape of health care to include alternative paradigms of healing along with conventional medical care. Such a shift would put complementary and alternative medicine occupations in a better position to advance professionally and become formal elements of the established health care system. [Copyright &y& Elsevier]

Abstract: Trust is an important theme running through the literature on the ethics of biomedical research, but it is rarely given centre stage. In this paper, we present data gathered from a study aimed at exploring community views regarding the informed consent processes carried out by a large research centre on the Kenyan Coast. The findings point to the centrality of trust and elements of mistrust in general community views, in parents’ (mis)understanding of studies they consent their children to be involved in, in refusals and concerns, and in community members’ views about whether informed consent is a relevant and practical model to follow. Tentative ideas on how trust and a healthy mistrust might be balanced highlight the importance of strengthening communication surrounding basic health care as well as research, and of fostering ‘an inner generated ethic of service’. The latter is particularly fundamental, but cannot be built and regulated through the laws, policies and guidelines that currently govern biomedical research practice. [Copyright &y& Elsevier]

The internet is becoming a favored technology for carrying out survey research, and particularly sexual health research. However, its utility is limited by unresolved sampling questions such as how biased internet samples may be. This paper addresses this issue through comparison of a 'gold standard' random selection population-based sexual survey (The Swedish Sexual Life Survey) with an internet-based survey in Sweden which used identical demographic, sexual and relationship questions, to ascertain the biases and degree of comparability between the recruitment methods. On the internet questionnaire, there were significant differences between males and females on all the measured indices. There were no significant differences in proportions of males and females, or nationality, between the two samples. However, the internet samples for both males and females were significantly more likely to be younger, originally from and currently living in a major city, better educated, and more likely to be students and less likely to be retired. Relationship variables were less likely to be significantly different between samples: there were no differences for males or females between the SSS and the internet samples on having been in a committed relationship, and how they met their present partner, nor for males in having discussed separation in the past year. However, there was a higher proportion of people attracted to the same sex, and higher numbers of sex partners (as well as a higher proportion of people reporting no sex) in the past year, in the internet sample. These data suggest that apart from the demographics of age, location, and education, currently being in a committed relationship, and the number of sex partners in the past year, internet samples are comparable for relationship characteristics and history with a national sexual life survey. Comparison of internet data with random survey data in other western countries should occur to determine if these patterns are replicated. [ABSTRACT FROM AUTHOR]

Abstract: Do the benefits from health research justify the resources devoted to it? Addressing this should not only meet increasing accountability demands, but could also enhance understanding of research utilisation and how best to organise health research systems to increase the benefits. The process from basic research to eventual application and patient benefit is usually complex. The use of antenatal corticosteroids when preterm delivery is expected has featured large in the debates about research utilisation and provides an insight into these complexities. Based on an analysis of previous modelling of research utilisation and payback assessment, a framework is developed in which the existing literature on the use of corticosteroids, combined with new material developed by the authors, can be reviewed and synthesised. The move from animal studies to human trials was undertaken by the same individual. Some early clinical application of the findings occurred concurrently with a series of further trials. Nevertheless, the implementation of these findings stalled rather than accelerated as is predicted by some models. The eventual systematic review of the trials played a part in the development of the Cochrane Collaboration and increased the impact on practice. Further implementation approaches were used in various countries, including clinical guidelines, a National Institutes of Health Consensus Conference, and various implementation projects within the UK. This paper shows how an assessment of the benefits from this stream of research and utilisation projects can be constructed. It concludes that the application of a model for assessing payback can help to demonstrate the benefits from the research in this field and enhance our understanding of research utilisation. [Copyright &y& Elsevier]

While rationing is present in many health care systems, little empirical research has been undertaken to investigate the public''s preferences and information needs towards the rationing of their care. This paper reports the results of an interactive survey administered via an internet survey panel to investigate preferences for the provision of information about explicit rationing decisions. We presented a series of vignettes to respondents, describing hypothetical patients and explicit rationing decisions. In two different survey versions, patients were either characterized as matching or mismatching respondents’ age and gender.We observed strong preferences for the disclosure of rationing information to patients. Seventy one percent of responders expressed a general attitude in favor of explicitly informing patients about the rationing of their care. In the presented scenarios, the fraction supporting disclosure to patients ranged from 63% to 89%. The clinical situation described in the vignettes, a positive, general attitude towards the disclosure of rationing decisions, age, and gender of respondents were main predictors for participants’ votes. Preferences were relatively unaffected and insensitive to the matching of hypothetical patients and respondents’ characteristics. This study suggests that if doctors are to play an active role in health care rationing, patients expect them to honestly discuss the decisions made, the economics behind these and finally, to deal with those patients that do not accept the final decision. [Copyright &y& Elsevier]

Recent work on health and place has examined the impact of the environment on health. At the local level, research has followed several strands, such as contextual effects of neighborhoods, the impact of differential access to services and amenities, effects of a neighborhood''s collective efficacy, and the relationship between social capital and health. Of these four approaches, social capital has generated the most debate; some scholars discuss social capital as a key epidemiological variable, while others discount or dismiss its utility. We undertook this research to assess whether the concept of social capital could increase our understanding of the impact of neighborhoods on residents’ health. We utilized key informant interviews and focus groups to understand ways in which residents of diverse neighborhoods in one large California city perceived that their local communities were affecting health. We argue in this paper that using the term “social capital” to discuss social resources and their mobilization in a particular neighborhood highlights the ways in which social resources can vary in relation to economic resources, and that residents of neighborhoods with differing levels of services and amenities face different issues when mobilizing to improve their neighborhoods. Additionally, the projects that people invest in vary by neighborhood socioeconomic status. We draw on the paired concepts of “bridging” and “bonding” social capital, and discuss that while stores of bonding social capital may be more uniform across neighborhoods of varying SES, bridging social capital tends to be found in greater amounts in neighborhoods of higher SES which allows them greater success when mobilizing to improve their neighborhoods. [Copyright &y& Elsevier]

In the last three decades, mothers of children who have chronic illnesses or disabilities have been studied extensively. With some notable exceptions, most research has overlooked the socio-political context of disability and has interpreted maternal behaviours and feelings in negative or psychopathological terms. In this paper we report the results of using Pierre Bourdieu''s central concepts to reanalyse three independent qualitative studies focused on mothers’ accounts of raising children with severe disabling conditions. We illustrate the logic of mothers’ practices and conclude that they represent strategic manipulations of accessible bodily, cultural and symbolic capital consistent with the ‘rules of the game’ across multiple fields. Mothers struggled to establish and maintain the personhood and value of their children, and to obtain resources within a broader context of body normativeness, exclusion and inequity. This Bourdieusian rendering of the logic of maternal practices has important implications for research and paediatric practices. [Copyright &y& Elsevier]