The use of protocol in breaking bad news: evidence and ethos

This article discusses health professionals use of protocol in the breaking of bad news, focusing particularly on the well-known SPIKES framework. The evidence of impact on the patient experience is examined and recommendations are made for further outcome-based research. Existing evidence suggests that the model as commonly interpreted may not fully meet the needs of patients or reflect the clinical experience of breaking bad news for some professionals and further guidance may be needed to support them in their practice. The ethos of the step-wise protocol is debated, questioning whether it helps or hinders individualised care and the formation of a genuine relationship between patient and professional. Finally, recommendations for practice are offered

Dignity and Narrative Medicine

Critiques of the dehumanising aspects of contemporary medical practice have generated increasing interest in the ways in which health care can foster a holistic sense of wellbeing. We examine the relationship between two areas of this humanistic endeavour: narrative and dignity. This paper makes two simple arguments that are intuitive but have not yet been explored in detail: that narrative competence of carers is required for maintaining or recreating dignity, and that dignity promotion in health care practice is primarily narrative in form. The multiple meanings that dignity has in a person’s life are what give the concept power and can only be captured by narrative. This has implications for health care practice where narrative work will be increasingly required to support patient dignity in under-resourced and over-subscribed health care system

Four Butterflies: End of Life Stories of Transition and Transformation

In this article, the author discusses her experiences as an Artist In Residence in the Department of Palliative Care and Rehabilitation Medicine at the University of Texas M. D. Anderson Cancer Center. Emphasis is placed on the ways in which end of life images and narratives often unfold in the fragile yet powerful space where conceptions of aesthetics and spirituality intersect with critical issues in the medical humanities. Drawing on four vivid case studies, the author examines the ways in which end of life narratives shed valuable light on conceptions of the subtlety of human embodiment; issues of violation, sorrow, and forgiveness; the mystical dimensions of traditional cultural beliefs; and the capacity for perceiving the natural world as a living symbol of grace. In so doing, she explores how the themes of transition and transformation become invested with meaningful existential and symbolic dimensions in artworks that give voice and presence to some of the most vulnerable, and often invisible, members of our societyﾗpeople at the end of life

Fiber-Flux Diffusion Density for White Matter Tracts Analysis: Application to Mild Anomalies Localization in Contact Sports Players

We present the concept of fiber-flux density for locally quantifying white matter (WM) fiber bundles. By combining scalar diffusivity measures (e.g., fractional anisotropy) with fiber-flux measurements, we define new local descriptors called Fiber-Flux Diffusion Density (FFDD) vectors. Applying each descriptor throughout fiber bundles allows along-tract coupling of a specific diffusion measure with geometrical properties, such as fiber orientation and coherence. A key step in the proposed framework is the construction of an FFDD dissimilarity measure for sub-voxel alignment of fiber bundles, based on the fast marching method (FMM). The obtained aligned WM tract-profiles enable meaningful inter-subject comparisons and group-wise statistical analysis. We demonstrate our method using two different datasets of contact sports players. Along-tract pairwise comparison as well as group-wise analysis, with respect to non-player healthy controls, reveal significant and spatially-consistent FFDD anomalies. Comparing our method with along-tract FA analysis shows improved sensitivity to subtle structural anomalies in football players over standard FA measurements

Xq27 FRAXA locus is a strong candidate for dyslexia: evidence from a genome-wide scan in French families.

Dyslexia is a frequent neurodevelopmental learning disorder. To date, nine susceptibility loci have been identified, one of them being DYX9, located in Xq27. We performed the first French SNP linkage study followed by candidate gene investigation in dyslexia by studying 12 multiplex families (58 subjects) with at least two children affected, according to categorical restrictive criteria for phenotype definition. Significant results emerged on Xq27.3 within DYX9. The maximum multipoint LOD score reached 3,884 between rs12558359 and rs454992. Within this region, seven candidate genes were investigated for mutations in exonic sequences (CXORF1, CXORF51, SLITRK2, FMR1, FMR2, ASFMR1, FMR1NB), all having a role during brain development. We further looked for 50 UTR trinucleotide repeats in FMR1 and FMR2 genes. No mutation or polymorphism co-segregating with dyslexia was found. This finding in French families with Dyslexia showed significant linkage on Xq27.3 enclosing FRAXA, and consequently confirmed the DYX9 region as a robust susceptibility locus. We reduced the previously described interval from 6.8 (DXS1227–DXS8091) to 4 Mb also disclosing a higher LOD score

"I feel so stupid because I can't give a proper answer ..." How older adults describe chronic pain: a qualitative study

Background - Over 50% of older adults experience chronic pain. Poorly managed pain threatens independent functioning, limits social activities and detrimentally affects emotional wellbeing. Yet, chronic pain is not fully understood from older adults’ perspectives; subsequently, pain management in later life is not necessarily based on their priorities or needs. This paper reports a qualitative exploration of older adults’ accounts of living with chronic pain, focusing on how they describe pain, with a view to informing approaches to its assessment. Methods - Cognitively intact men and women aged over sixty-five who lived in the community opted into the study through responding to advertisements in the media and via contacts with groups and organisations in North-East Scotland. Interviews were transcribed and thematically analysed using a framework approach. Results - Qualitative individual interviews and one group interview were undertaken with 23 older adults. Following analysis, the following main themes emerged: diversity in conceptualising pain using a simple numerical score; personalising the meaning of pain by way of stories, similes and metaphors; and, contextualising pain in relation to its impact on activities. Conclusions - The importance of attending to individuals’ stories as a meaningful way of describing pain for older adults is highlighted, suggesting that a narrative approach, as recommended and researched in other areas of medicine, may usefully be applied in pain assessment for older adults. Along with the judicious use of numerical tools, this requires innovative methods to elicit verbal accounts, such as using similes and metaphors to help older adults describe and discuss their experience, and contextualising the effects of pain on activities that are important to them

The thing about pain: The remaking of illness narratives in chronic pain expressions on social media

In this article, we analyse chronic pain narratives on Flickr and Tumblr. We focus on how, by incorporating visual and multimodal elements, chronic pain expressions in social media significantly extend and challenge the logic, function and effects of traditional ‘illness narratives’. We examine a sample of images and blogs related to chronic pain and formulate a typology of chronic pain expressions on these sites. Flickr brings a form of narrative immediacy, making the pain experience visible, eliciting empathy and marking chronicity. Tumblr lends itself to more networked forms of interaction through the circulation of multimodal memes, and support communities are built through humour and social criticism. We argue that new forms of mediation and social media dynamics transform pain narratives. This has implications for our understandings of the forms and formats of pain communication and offers new possibilities for communicating pain within and beyond clinical contexts