Who speaks up for Inés Fonseca? Representing violence against vulnerable subjects and the ethics of care in fictional narrative about Alzheimer’s disease:Ahora tocad música de baile (2004) by Andrés Barba

This paper studies the Spanish fictional novel by Andrés Barba, Ahora tocad música de baile (2004), one of the first cultural texts dealing entirely with Alzheimer’s disease (AD) to appear in Spain. It argues that the significance of Barba’s fictional novel rests on two important issues: the ethics of representation of violence against vulnerable subjects and the ethics of care. The paper analyses how these two issues allow Barba to create a story in which the verbal and physical abuse to which the person living with Alzheimer’s disease is subjected places the reader, on the one hand, as voyeur/witness of the abuse; and, on the other, as interpreter, and ultimately judge, of the fine line that separates euthanasia, assisted suicide, and murder. The open ending of the novel defers all ethical and moral judgment to the reader. It examines how the novel offers a monolithic perspective about AD, in which care is presented as a burden. In fact, this study shows that the novel’s multi-layered structure and polyphonic nature places the emphasis on stigmas, stereotypes and negative metaphors around AD, as found in contemporary social discourses.

Evaluation of low vision services on the quality of life of individuals with age-related macular degeneration

Background: Age-related macular degeneration (ARMD) is a major cause of irreversible visual loss in the elderly and a significant threat to their quality of life. Although low vision services often improve the functional outcomes of individuals with macular disease, it remains unclear whether or not they have any impact on quality of life. The principal aim of this study was to determine the effect of a hospital-based low vision clinic on the quality of life of individuals with ARMD. Methods: Forty patients with ARMD attended the low vision clinic at Milton Keynes University Hospital. Quality of life was measured with the vision-specific Low Vision Quality of Life (LVQOL) questionnaire and the general health EuroQol (EQ-5D-5L) questionnaire. Measures were completed at baseline (time zero, T0), and at three- (T3) and six-month (T6) follow-up visits. Results: The near visual acuity of individuals attending the low vision clinic for the first time improved significantly between visits T0 and T3 (p=0.005), reflecting the practiced use of their newly-dispensed low vision aids. As expected, there was no significant change in near acuity over this time period for existing patients. For both new and existing patients, a significant increase in LVQOL score was evident between visits T0 and T3, with a further significant improvement between T3 and T6. Similarly, there was a significant decrease in EQ-5D-5L questionnaire scores between visits T0 and T6. Conclusions: The higher LVQOL scores obtained at the end of the study period (T6) provide evidence that low vision services at Milton Keynes University Hospital served to improve patient quality of life. The reduction in EQ-5D-5L scores over the same time period suggests that low vision services also provide for an improvement in general health-related quality of life. Impact: The findings support the cause of low vision services to improve not only the vision and functional outcomes of individuals with macular disease but also their quality of life. Moreover, the findings suggest that a more efficient allocation of resources at low vision clinics may be possible through the standardisation of patient follow-up frequency.

Public attitudes on the ethics of deceptively planting false memories to motivate healthy behavior

Researchers have proposed that planting false memories could have positive behavioral consequences. The idea of deceptively planting “beneficial” false memories outside of the laboratory raises important ethical questions, but how might the general public appraise this moral dilemma? In two studies, participants from the USA and UK read about a fictional “false-memory therapy” that led people to adopt healthy behaviors. Participants then reported their attitudes toward the acceptability of this therapy, via scale-rating (both studies) and open-text (Study 2) responses. The data revealed highly divergent responses to this contentious issue, ranging from abject horror to unqualified enthusiasm. Moreover, the responses shed light on conditions that participants believed would make the therapy less or more ethical. Whether or not deceptively planting memories outside the lab could ever be justifiable, these studies add valuable evidence to scientific and societal debates on neuroethics, whose relevance to memory science is increasingly acute.

A model for the modular evolution of rna addressing open questions on the origin of life

A main unsolved problem in the RNA world scenario for the origin of life is how a template-dependent RNA polymerase ribozyme emerged from short RNA oligomers generated by random polymerization of ribonucleotides (Joyce and Orgel 2006). Current estimates establish a minimum size about 165 nt long for such a ribozyme (Johnston et al. 2001), a length three to four times that of the longest RNA oligomers obtained by random polymerization on clay mineral surfaces (Huang and Ferris 2003, 2006). To overcome this gap, we have developed a stepwise model of ligation-based, modular evolution of RNA (Briones et al. 2009) whose main conceptual steps are summarized in Figure 1. This scenario has two main advantages with respect to previous hypotheses put forward for the origin of the RNA world: i) short RNA....

Design of the low vision quality-of-life questionnaire (LVQOL) and measuring the outcome of low-vision rehabilitation

PURPOSE: To design and validate a vision-specific quality-of-life assessment tool to be used in a clinical setting to evaluate low-vision rehabilitation strategy and management. METHODS: Previous vision-related questionnaires were assessed by low-vision rehabilitation professionals and patients for relevance and coverage. The 74 items selected were pretested to ensure correct interpretation. One hundred and fifty patients with low vision completed the chosen questions on four occasions to allow the selection of the most appropriate items. The vision-specific quality of life of patients with low vision was compared with that of 70 age-matched and gender-matched patients with normal vision and before and after low-vision rehabilitation in 278 patients. RESULTS: Items that were unreliable, internally inconsistent, redundant, or not relevant were excluded, resulting in the 25-item Low Vision Quality-of-Life Questionnaire (LVQOL). Completion of the LVQOL results in a summed score between 0 (a low quality of life) and 125 (a high quality of life). The LVQOL has a high internal consistency (α = 0.88) and good reliability (0.72). The average LVQOL score for a population with low vision (60.9 ± 25.1) was significantly lower than the average score of those with normal vision (100.3 ± 20.8). Rehabilitation improved the LVQOL score of those with low vision by an average of 6.8 ± 15.6 (17%). CONCLUSIONS: The LVQOL was shown to be an internally consistent, reliable, and fast method for measuring the vision-specific quality of life of the visually impaired in a clinical setting. It is able to quantify the quality of life of those with low vision and is useful in determining the effects of low-vision rehabilitation. Copyright (C) 2000 Elsevier Science Inc.

The use of anticholinergic agents to treat excessive oropharyngeal and tracheal secretions in palliative care

Palliative care involves a multi-professional team approach to the provision of active, holistic care for patients and their families when the patient's disease is no longer responsive to curative treatment. Patient care encompasses medical and pharmacological intervention for symptom control, together with psychological, spiritual and social support for patients and families. Care is provided by teams in hospice, hospital or community environments. Although traditionally associated with providing care for cancer patients, palliative care services are increasingly providing for patients with non-malignant disease. Symptoms commonly associated with terminal phase of disease include pain, nausea, agitation, respiratory symptoms and general fatigue. During the last few days of life, patients may become weak, resulting in difficulty taking oral medication and have periods of unconsciousness. Some patients may require drug administration via subcutaneous infusion. A proportion of patients may develop difficulty clearing respiratory secretions causing a characteristic ‘death rattle’, which although not generally considered to be distressing for the patient, is often treated with a variety of anticholinergic drugs in an attempt to reduce the ‘noisy breathing’ for the benefit of relatives and others who may be closely associated with the patient.This study examined treatment of death rattle in two Hospices focusing on objective and subjective outcome measures in order to determine the efficacy of anticholinergic regimens in current use. Qualitative methods were employed to elicit attitudes of professionals and carers working closely with the patient. The number of patients recruited and monitored were small, many confounding factors were identified which questioned firstly the clinical rationale for administering anticholinergic drugs routinely to treat death rattle and secondly, the ethics of administering drug regimens to patients to treat death rattle with the primary aim of relieving distress for others. Ethnical issues, including those of consent are discussed in relation to their impact on the methodology of end of life studies in medicines management in palliative care.

Development and psychometric tests of the Chinese-version low vision quality of life questionnaire

Background/Aims: To develop and assess the psychometric validity of a Chinese language Vision Health related quality-of-life (VRQoL) measurement instrument for the Chinese visually impaired. Methods: The Low Vision Quality of Life Questionnaire (LVQOL) was translated and adapted into the Chinese-version Low Vision Quality of Life Questionnaire (CLVQOL). The CLVQOL was completed by 100 randomly selected people with low vision (primary group) and 100 people with normal vision (control group). Ninety-four participants from the primary group completed the CLVQOL a second time 2 weeks later (test-retest group). The internal consistency reliability, test-retest reliability, item-internal consistency, item-discrimination validity, construct validity and discriminatory power of the CLVQOL were calculated. Results: The review committee agreed that the CLVQOL replicated the meaning of the LVQOL and was sensitive to cultural differences. The Cronbach's α coefficient and the split-half coefficient for the four scales and total CLVQOL scales were 0.75-0.97. The test-retest reliability as estimated by the intraclass correlations coefficient was 0.69-0.95. Item-internal consistency was >0.4 and item-discrimination validity was generally <0.40. The Varimax rotation factor analysis of the CLVQOL identified four principal factors. the quality-of-life rating of four subscales and the total score of the CLVQOL of the primary group were lower than those of the Control group, both in hospital-based subjects and community-based subjects. Conclusion: The CLVQOL Chinese is a culturally specific vision-related quality-of-life measure instrument. It satisfies conventional psychometric criteria, discriminates visually healthy populations from low vision patients and may be valuable in screening the local community as well as for use in clinical practice or research. © Springer 2005.

Management of nut allergy influences quality of life and anxiety in children and their mothers

Nut allergy is known to impact on the quality of life (QoL) and anxiety of both the allergic child and their parents, but little is known about how the management of food allergy is associated with these variables. To investigate the impact of nut allergy on QoL and anxiety in mothers and children with nut allergy in order to identify management strategies that may influence these factors. Forty-one nut allergic children (age 6–16 yrs) and their mothers completed questionnaires to assess maternal and children’s QoL (PedsQL™, WHOQOL-BREF, FAQL-PB), anxiety (SCAS, STAI) and perceived stress scale (PSS). Children also completed a nut allergy specific QoL questionnaire. Demographic data, details of previous reactions, test results and management plans were collected using parent-report questionnaires and hospital notes. Children with nut allergy had poorer emotional (p = 0.004), social (p = 0.043), and psychological (p = 0.006) QoL compared to healthy normative data. Maternal and child QoL and anxiety were not influenced by the severity of previous reactions. Mother and child reported lower anxiety (p = 0.043 and p < 0.001 respectively) when the child was prescribed an epinephrine auto-injector. Anxiety was not associated with whether the child carried the auto-injector or whether they strictly avoided traces of nuts in foods. Prescribing auto-injectors is associated with reduced anxiety for food allergic children and their mothers, but is not associated with improved adherence with medical management or reduced risk-taking behavior.

The dawn of the RNA World:toward functional complexity through ligation of random RNA oligomers

A main unsolved problem in the RNA World scenario for the origin of life is how a template-dependent RNA polymerase ribozyme emerged from short RNA oligomers obtained by random polymerization on mineral surfaces. A number of computational studies have shown that the structural repertoire yielded by that process is dominated by topologically simple structures, notably hairpin-like ones. A fraction of these could display RNA ligase activity and catalyze the assembly of larger, eventually functional RNA molecules retaining their previous modular structure: molecular complexity increases but template replication is absent. This allows us to build up a stepwise model of ligation- based, modular evolution that could pave the way to the emergence of a ribozyme with RNA replicase activity, step at which information-driven Darwinian evolution would be triggered. Copyright © 2009 RNA Society.

FREADMAN, AnneThe Livres-Souvenirs of Colette Genre and the Telling of Time Oxford: Legenda, August 2012200 pp., £40.00, ISBN: 978-1-906540-93-7

Full text: The title of the book gives us a major clue on the innovative approach developed by Anne Freadman in her analysis of a particular Colette corpus, the one devoted to auto-biographical writing: Les Vrilles de la vigne, Mes apprentissages, La Maison de Claudine, Sido ,L’E ́toile Vesper and Le Fanal bleu. Freadman follows the powerful lure of Rimbaldianvieilles vieilleries and its echoes with Colette’s fondness for collecting objects, people and memories. To this must be added a technical aspect, that of the study of the genre of Colette’s writing. Freadman argues that, by largely avoiding the autobiographical form, the writer achieves a new way of ‘telling time’, collecting anecdotes and detail taken from the quotidian and setting them within an all-encompassing preoccupation with time. This provides the second part of the title.The sonata form directs the sequence of the book, orchestrated into five parts,from ‘exposition’ to ‘first subject’ to‘bridge’ to ‘second subject’ to ‘recapitulation’. This has the advantage of enabling Freadman to move and progress between distinct themes—autobiography first,then alternative forms—with grace,whilst preserving within her own writing what she sees as the essence of Colette’s relationship to time in her ‘Livres-Souvenirs’, the telling of time. This‘telling of time’ is itself therefore cleverly subjected to the time constraints and freedoms of musical composition. Freadman’s ‘Exposition’ takes us through a discussion of the autobiographical genre, analysing the texts against anumber of theorists, from Lejeune to Benjamin and Ricoeur, before launching into ‘Colette and Autobiography’. It argues pertinently that Colette did not write a ‘sustained’ autobiography, even inthe most autobiographical of her writings, Mes apprentissages. Measured against Goodwin’s three sources for autobiography, confession, apologia and memoirs, Colette’s autobiographical writings appear to be at odds with all of them. Freadman then goes on in Part II of her argument, to persuasively uncover a project that rejects self-scrutiny and with no autobiographical strategy. In ‘Collecting Time’, despite claims of continuity, narrative logic and causality areabandoned in favour of a collection offragments, family stories that are built up generation after generation into familylegends. A close and fruitful analysis of Sidoleads us to a study of ‘The Art of Ending’, concentrating on L’E ́toile Vesperandle Fanal Bleu. The closing chapter gives a fascinating reading of La Naissance du jouras an exemplar of the way in which the two subjects developed in Freadman’s volume are cast together:Colette’s own working through the autobiographical genre, and her refusal to write memoirs, in favour of collecting memories, and the strategies she uses for her purpose. In ‘Recapitulation’, her concluding chapter, Freadman adroitlyen capsulates her analysis in a fetching title: ‘Fables of Time’. Indeed, the wholepremise of her book is to move away from autobiographical genre, having acknowledged the links and debt the corpus owes to it, and into a study of the multiple and fruitful ways in which Colette tells time.The rich and varied readings of thematerial, competently informed by theoretical input, together with acute sensitivity to the corpus, mark out this study as incontournable for Colette scholars.