Altered eating: a definition and framework for assessment and intervention.

BACKGROUND: Eating can be a significant challenge for cancer survivors; however, to date there is no systematic way of assessing and addressing food related quality of life in this group. The purpose of our study was to develop a framework for doing so. METHODS: Over the course of 6 years in participant-led food workshops, we worked alongside 25 head and neck cancer (HNC) survivors and their partners, employing video-reflexive ethnographic (VRE) methods. The current study reports on data from the two summative workshops of this series where we worked with participants to cohere the emergent themes. Video and transcripts were reviewed and coded with participants and stakeholders according to domains of life that were affected by food. Three of the authors, one of whom is both survivor and researcher, arrived at the consensus framework. RESULTS: Seven areas of life were identified as affecting, or being affected by, altered eating. Three were physiological: anatomical, functional and sensory. Two captured the cognitive and behavioural labour of eating. Social life and identity were altered. The foregoing had an enduring emotional impact. CONCLUSIONS: Altered eating has physical, emotional and social consequences. The altered eating framework provides a systematic way of exploring those consequences with individual survivors. This framework has the potential to improve both the assessment and treatment of altered eating, to benefit food-related quality of life.

Risk communication in the hyperacute setting of stroke thrombolysis: an interview study of clinicians.

OBJECTIVE: Communicating treatment risks and benefits to patients and their carers is central to clinical practice in modern healthcare. We investigated the challenges of risk communication by clinicians offering thrombolytic therapy for hyperacute stroke where treatment must be administered rapidly to maximise benefit. METHOD: Semistructured interviews with 13 clinicians from three acute stroke units involved in decision making and/or information provision about thrombolysis. We report on clinicians' accounts of communicating risks and benefits to patients and carers. Framework analysis was employed. RESULTS: We identified the major challenges facing clinicians in communicating risk in this context that is, disease complexity, patients' capacity and time constraints, and communicating quality of life after stroke. We found significant variation in the data on risks and benefits that clinicians provide, and ways these were communicated to patients. Clinicians' communication strategies varied and included practices such as: a phased approach to communicating information, being responsive to the patient and family and documenting information they gave to patients. CONCLUSIONS: Risk communication about thrombolysis involves complex uncertainties. We elucidate the challenges of effective risk communication in a hyperacute setting and identify the issues regarding variation in risk communication and the use of less effective formats for the communication of numerical risks and benefits. The paper identifies good practice, such as the phased transfer of information over the care pathway, and ways in which clinicians might be supported to overcome challenges. This includes standardised risk and benefit information alongside appropriate personalisation of risk communication. Effective risk communication in emergency settings requires presentation of high-quality data which is amenable to tailoring to individual patients' circumstances. It necessitates clinical skills development supported by personalised risk communication tools.

Securing the data economy: translating privacy and enacting security in the development of DataSHIELD.

Contemporary bioscience is seeing the emergence of a new data economy: with data as its fundamental unit of exchange. While sharing data within this new 'economy' provides many potential advantages, the sharing of individual data raises important social and ethical concerns. We examine ongoing development of one technology, DataSHIELD, which appears to elide privacy concerns about sharing data by enabling shared analysis while not actually sharing any individual-level data. We combine presentation of the development of DataSHIELD with presentation of an ethnographic study of a workshop to test the technology. DataSHIELD produced an application of the norm of privacy that was practical, flexible and operationalizable in researchers' everyday activities, and one which fulfilled the requirements of ethics committees. We demonstrated that an analysis run via DataSHIELD could precisely replicate results produced by a standard analysis where all data are physically pooled and analyzed together. In developing DataSHIELD, the ethical concept of privacy was transformed into an issue of security. Development of DataSHIELD was based on social practices as well as scientific and ethical motivations. Therefore, the 'success' of DataSHIELD would, likewise, be dependent on more than just the mathematics and the security of the technology.

Decision support for women choosing mode of delivery after a previous caesarean section: a developmental study.

OBJECTIVE: To examine the impact of a decision support intervention designed for women choosing mode of delivery after one previous caesarean section. METHODS: A decision support intervention was developed comprising of an informational DVD/video and a home visit by a midwife. 16 women received standard clinical care and 16 women additionally received the intervention. Pilot questionnaire data was collected at 12, 28 and 37 weeks gestation from all participants. 18 of the 32 participants also participated in semi-structured interviews after they had decided mode of delivery at 37 weeks gestation. RESULTS: Four themes were identified in the qualitative data relating to decision-making: informational support, emotional support, participation and involvement in decision-making, and the way in which decision support was used. CONCLUSION: The difficulties experienced by women in this decision-making scenario were confirmed. The intervention was welcomed by the participants and both qualitative and quantitative findings suggest the intervention improved decision-making experiences. PRACTICE IMPLICATIONS: This intervention offers an accessible method of decision support which effectively targets the needs of women choosing mode of delivery after a previous caesarean delivery. Using easily reproducible informational materials, and the pre-existing skills of midwives, it would be relatively straightforward to introduce this intervention into current clinical practice.

Qualitative methods in a randomised controlled trial: the role of an integrated qualitative process evaluation in providing evidence to discontinue the intervention in one arm of a trial of a decision support tool.

OBJECTIVE: To understand participants' experiences and understandings of the interventions in the trial of a computerised decision support tool in patients with atrial fibrillation being considered for anti-coagulation treatment. DESIGN: Qualitative process evaluation carried out alongside the trial: non-participant observation and semistructured interviews. PARTICIPANTS: 30 participants aged >60 years taking part in the trial of a computerised decision support tool. RESULTS: Qualitative evidence provided the rationale to undertake a decision to discontinue one arm of the trial on the basis that the intervention in that arm, a standard gamble values elicitation exercise was causing confusion and was unlikely to produce valid data on participant values. CONCLUSIONS: Qualitative methods used alongside a trial allow an understanding of the process and progress of a trial, and provide evidence to intervene in the trial if necessary, including evidence for the rationale to discontinue an intervention arm of the trial.

Flexible therapeutic landscapes of labour and the place of pain relief.

Flexibility in the design and enactment of spaces of healthcare is important in how providers respond to variations in patient expectations and experience. Health geographers have contributed to a wide body of literature concerning the therapeutic qualities of landscapes and the material, social and symbolic orderings of place and their uniqueness for individuals. In this paper, we draw upon these findings and a 'culture of place' approach to consider the complexities of maternity care and issues of pain relief. Given that pain is widely held to be a subjective experience and one that, in an era of patient decision making, increasingly demands discretionary approaches to its relief, we consider how medical professionals help to construct flexibility in healthcare and how this affects therapeutic landscapes. Drawing on analysis of four focus groups involving parent educators, midwives, health visitors, anaesthetists and obstetricians in the NE of England, we explore the material and discursive construction of flexible therapeutic landscapes and pain relief. Our findings suggest that flexibility is constrained and fashioned in association with health care professional's sense of place as already constituted. We propose that providing maternity care professionals with an explicit awareness of how places are relationally constructed, may help in expanding the therapeutic qualities of particular settings, and support a (more) flexible approach.

How do newly diagnosed hypertensives understand 'risk'? Narratives used in coping with risk.

BACKGROUND: In many clinical settings, there are concerns about communicating risk effectively in the absence of a clear understanding of what risk means to individuals. OBJECTIVES: To explore the ways in which individuals think about risk in the context of a recent diagnosis of hypertension. METHODS: A qualitative interview study of 11 recently diagnosed hypertensive patients recruited from general practice. RESULTS: Participants presented a 'narrative' about their relationship to risk. Two general types of risk narrative were evident: 'denial' narratives and 'acceptance' narratives (though some examples fall along the spectrum in between). The 'deniers' described risk as something they do not think about, or as applying to others but not themselves. The 'acceptors' described risk as an unavoidable part of everyday life. The use of a 'denial' or 'acceptance' narrative appeared to be independent of the level of understanding of evidence-based hypertension medical risks. Some participants who used a denial narrative also described taking a variety of risk-reducing actions in relation to the new diagnosis. For some people the distancing of risk achieved by the narrative seems to be an important way of coping. CONCLUSIONS: Participants described risk by way of a personal narrative, which functioned as a coping position. The coping position adopted did not presuppose either levels of knowledge, or health-related behaviour. In communicating information about risk, practitioners need to be aware of the use of coping narratives; 'denial' does not necessarily imply lack of understanding or unwillingness to take medically appropriate health-related actions.

Species identities of enterococci isolated from clinical specimens.

Conventional tests and commercially available systems were used to determine the species identities of clinical isolates of enterococci. Strict adherence to the conventional test scheme of Facklam and Collins (R. R. Facklam and M. D. Collins, J. Clin. Microbiol. 27:731-734, 1989) resulted in the misidentification of lactose-negative Enterococcus faecalis isolates as Enterococcus solitarius, but this problem was overcome by the application of additional tests. The commercially available systems tested were unable to recognize some of the more recently described enterococcal species. E. faecalis accounted for 87.1% of 302 consecutive isolates. Enterococcus faecium (8.6%), Enterococcus avium (0.7%), Enterococcus durans (0.3%), Enterococcus gallinarum (1.0%), Enterococcus casseliflavus (1.0%), Enterococcus hirae (0.3%), and Enterococcus raffinosus (0.3%) isolates were also identified. None of the isolates produced beta-lactamase, but 15.4% of 235 isolates tested, including 1 strain of E. gallinarum, displayed high-level resistance to gentamicin.