Parents' experiences of their children's presence in discussions with physicians about leukemia

OBJECTIVE: We aimed to examine parents' views regarding their preadolescent child's presence during discussions about serious illnesses. METHODS: In-depth qualitative interviews with parents of children receiving treatment for acute lymphoblastic leukemia were conducted. Parents were sampled from 6 UK treatment centers. Analysis was informed by the constant comparative method and content analysis. RESULTS: We report on interviews with 53 parents (33 mothers, 20 fathers). Parents acknowledged the benefits of communicating openly with children, but few thought that their child's presence in discussions was straightforwardly desirable. They described how their child's presence restricted their own communication with physicians, made concentrating difficult, and interfered with their efforts to care for their child emotionally. Children's presence was particularly difficult when significant issues were being discussed, including prognoses, adverse results, and certain medical procedures. Parents felt that such discussions posed a potential threat to their child, particularly when they had not first had an opportunity to discuss information with the physician separately from the child. In contrast, separate meetings enabled parents to absorb information and to convey it to their child at an appropriate time and in a reassuring way. Some parents experienced difficulties in accessing separate meetings with physicians. CONCLUSIONS: The difficulties parents described could potentially be addressed by extending, beyond the diagnosis period, the practice of sequencing significant information so that it is communicated to parents in separate meetings before being communicated to the child and by periodically exploring with parents what information would be in each child's interests.

Treatment non-adherence in teenage and young adult patients with cancer

Adhering to treatment can be a significant issue for many patients diagnosed with chronic health conditions and this has been reported to be greater during the adolescent years. However, little is known about treatment adherence in teenage and young adult (TYA) patients with cancer. To increase awareness of the adherence challenges faced by these patients, we have reviewed the published work. The available evidence suggests that a substantial proportion of TYA patients with cancer do have difficulties, with reports that up to 63% of patients do not adhere to their treatment regimens. However, with inconsistent findings across studies, the true extent of non-adherence for these young patients is still unclear. Furthermore, it is apparent that there are many components of the cancer treatment regimen that have yet to be assessed in relation to patient adherence. Factors that have been shown to affect treatment adherence in TYA patients include patient emotional functioning (depression and self-esteem), patient health beliefs (perceived illness severity and vulnerability), and family environment (parental support and parent–child concordance). Strategies that foster greater patient adherence are also identified. These strategies are multifactorial, targeting not only the patient, but the health professional, family, and treatment regimen. This review highlights the lack of interventional studies addressing treatment adherence in TYA patients with cancer, with only one such intervention being identified: a video game intervention focusing on behavioural issues related to cancer treatment and care. Methodological issues in measuring adherence are addressed and suggestions for improving the design of future adherence studies highlighted, of which there is a great need.

Faith and protection: the construction of hope by parents of children with leukemia and their oncologists

Background. Oncologists are criticized for fostering unrealistic hope in patients and families, but criticisms reflect a perspective that is oversimplified and “expert” guidance that is ambiguous or impractical. Our aim was to understand how pediatric oncologists manage parents' hope in practice and to evaluate how they address parents' needs. Methods. Participants were 53 parents and 12 oncologists whom they consulted across six U.K. centers. We audio recorded consultations approximately 1–2, 6, and 12 months after diagnosis. Parents were interviewed after each consultation to elicit their perspectives on the consultation and clinical relationship. Transcripts of consultations and interviews were analyzed qualitatively. Results. Parents needed hope in order to function effectively in the face of despair, and all wanted the oncologists to help them be hopeful. Most parents focused hope on the short term. They therefore needed oncologists to be authoritative in taking responsibility for the child's long-term survival while cushioning parents from information about longer-term uncertainties and being positive in providing information about short-term progress. A few parents who could not fully trust their oncologist were unable to hope. Conclusion. Oncologists' pivotal role in sustaining hope was one that parents gave them. Most parents' “faith” in the oncologist allowed them to set aside, rather than deny, their fears about survival while investing their hopes in short-term milestones. Oncologists' behavior generally matched parents' needs, contradicting common criticisms of oncologists. Nevertheless, oncologists need to identify and address the difficulty that some parents have in fully trusting the oncologist and, consequently, being hopeful.

Is communication guidance mistaken? Qualitative study of parent-oncologist communication in childhood cancer

background: Guidance encourages oncologists to engage patients and relatives in discussing the emotions that accompany cancer diagnosis and treatment. We investigated the perspectives of parents of children with leukaemia on the role of paediatric oncologists in such discussion. methods: Qualitative study comprising 33 audio-recorded parent–oncologist consultations and semi-structured interviews with 67 parents during the year following diagnosis. results: Consultations soon after the diagnosis were largely devoid of overt discussion of parental emotion. Interviewed parents did not describe a need for such discussion. They spoke of being comforted by oncologists’ clinical focus, by the biomedical information they provided and by their calmness and constancy. When we explicitly asked parents 1 year later about the oncologists’ role in emotional support, they overwhelmingly told us that they did not want to discuss their feelings with oncologists. They wanted to preserve the oncologists’ focus on their child’s clinical care, deprecated anything that diverted from this and spoke of the value of boundaries in the parent–oncologist relationship. conclusion: Parents were usually comforted by oncologists, but this was not achieved in the way suggested by communication guidance. Communication guidance would benefit from an enhanced understanding of how emotional support is experienced by those who rely on it.

A global empirical system for probabilistic seasonal climate prediction

Preparing for episodes with risks of anomalous weather a month to a year ahead is an important challenge for governments, non-governmental organisations, and private companies and is dependent on the availability of reliable forecasts. The majority of operational seasonal forecasts are made using process-based dynamical models, which are complex, computationally challenging and prone to biases. Empirical forecast approaches built on statistical models to represent physical processes offer an alternative to dynamical systems and can provide either a benchmark for comparison or independent supplementary forecasts. Here, we present a simple empirical system based on multiple linear regression for producing probabilistic forecasts of seasonal surface air temperature and precipitation across the globe. The global CO2-equivalent concentration is taken as the primary predictor; subsequent predictors, including large-scale modes of variability in the climate system and local-scale information, are selected on the basis of their physical relationship with the predictand. The focus given to the climate change signal as a source of skill and the probabilistic nature of the forecasts produced constitute a novel approach to global empirical prediction. Hindcasts for the period 1961–2013 are validated against observations using deterministic (correlation of seasonal means) and probabilistic (continuous rank probability skill scores) metrics. Good skill is found in many regions, particularly for surface air temperature and most notably in much of Europe during the spring and summer seasons. For precipitation, skill is generally limited to regions with known El Niño–Southern Oscillation (ENSO) teleconnections. The system is used in a quasi-operational framework to generate empirical seasonal forecasts on a monthly basis.

A new regime of carbon counting: the practices and politics of accounting for everyday carbon through C02e

Inspired by the commercial desires of global brands and retailers to access the lucrative green consumer market, carbon is increasingly being counted and made knowable at the mundane sites of everyday production and consumption, from the carbon footprint of a plastic kitchen fork to that of an online bank account. Despite the challenges of counting and making commensurable the global warming impact of a myriad of biophysical and societal activities, this desire to communicate a product or service's carbon footprint has sparked complicated carbon calculative practices and enrolled actors at literally every node of multi-scaled and vastly complex global supply chains. Against this landscape, this paper critically analyzes the counting practices that create the ‘e’ in ‘CO2e’. It is shown that, central to these practices are a series of tools, models and databases which, in building upon previous work (Eden, 2012 and Star and Griesemer, 1989) we conceptualize here as ‘boundary objects’. By enrolling everyday actors from farmers to consumers, these objects abstract and stabilize greenhouse gas emissions from their messy material and social contexts into units of CO2e which can then be translated along a product's supply chain, thereby establishing a new currency of ‘everyday supply chain carbon’. However, in making all greenhouse gas-related practices commensurable and in enrolling and stabilizing the transfer of information between multiple actors these objects oversee a process of simplification reliant upon, and subject to, a multiplicity of approximations, assumptions, errors, discrepancies and/or omissions. Further the outcomes of these tools are subject to the politicized and commercial agendas of the worlds they attempt to link, with each boundary actor inscribing different meanings to a product's carbon footprint in accordance with their specific subjectivities, commercial desires and epistemic framings. It is therefore shown that how a boundary object transforms greenhouse gas emissions into units of CO2e, is the outcome of distinct ideologies regarding ‘what’ a product's carbon footprint is and how it should be made legible. These politicized decisions, in turn, inform specific reduction activities and ultimately advance distinct, specific and increasingly durable transition pathways to a low carbon society.

Order and disorder in fiction labyrinths: the librarians` representations in some contemporary cultural productions

This paper, first result of a larger research, proposes a query about some aspects of social representation of libraries and librarians, as they appear in literary and cinematographic productions. Little by little, this query, which arose from purposes of organizing catalogues, revealed elements that established different series, in which the narrative genre (literary or cinematographic) has no relevance to either libraries or librarians` representations. The presence of these elements seems to show some expectations and utopias in relation to the common knowledge, independently from narratives being located in the past, in the present or in the future, stimulating reflection on some medieval and baroque traditions about the library universe and its main characters, the librarians. The cinematographic material selected for research was The time machine, Farenheit 451, The day after tomorrow, Star Wars - episode II and the novels Martin Eden, The man without qualities, The time machine and La sombra del viento.

Tourism, dutch disease and welfare in an open dynamic economy

This paper examines the effects of an expansion in tourism on capital accumulation, sectoral output and resident welfare in an open economy with an externality in the traded good sector. An expansion of tourism increases the relative price of the nontraded good, improves the tertiary terms of trade and hence yields a gain in revenue. However, this increase in the relative price of nontraded goods results in a lowering of the demand for capital used in the traded sector. The subsequent de-industrialization in the traded good sector may lower resident welfare. This result is supported by numerical simulations.

Leontief paradox and the role of factor intensity measurement

In contrast with the prediction of the Heckscher-Ohlin (HO) theorem, Leontief (1953) found that the capital-labor ratio embodied in the US exports is smaller than the capital-labor ratio embodied in the US competitive import replacements. In Leontief's analysis, the measured factor content of US imports is computed based on the assumption that all countries are using the US factor intensity techniques. This paper relaxes all assumption of identical factor intensity techniques. It uses an inferring method to infer the factor intensity techniques of different countries based on international relative factor price differences. With the inferred differentiated factor intensity techniques , the Leontief paradox is re-investigated and is found to be either disappeared or eased.

Portals of the mind

The idea of a gateway or portal to another world is common in myth and fantasy, and, obviously, far older than the use of the same notion in computing. While computing portals take researchers to other domains of data, the use of portals in myths is often far more complex. In creation myths, the passing of portals has immense consequences for humankind, as in Adam and Eve's expulsion from their carefree existence in the Garden of Eden (unleashing the world's woes upon their descendants), and in the carrying away of Persephone by Pluto into the Underworld (leaving a legacy of cold and sunless months each year). In other types of myths, and in the fantastic tales they have bequeathed, portals provide heroes with strange and wonderful adventures, and with experiences that leave heroes irrevocably changed. This article will now explore these types of portals in more detail.The idea of a gateway or portal to another world is common in myth and fantasy, and, obviously, far older than the use of the same notion in computing. While computing portals take researchers to other domains of data, the use of portals in myths is often far more complex. In creation myths, the passing of portals has immense consequences for humankind, as in Adam and Eve's expulsion from their carefree existence in the Garden of Eden (unleashing the world's woes upon their descendants), and in the carrying away of Persephone by Pluto into the Underworld (leaving a legacy of cold and sunless months each year). In other types of myths, and in the fantastic tales they have bequeathed, portals provide heroes with strange and wonderful adventures, and with experiences that leave heroes irrevocably changed. This article will now explore these types of portals in more detail.

Capital and Consumption Tax Reforms in a Small Open Economy

The effects of a reform in capital and consumption taxes on private welfare and government tax revenue are examined for a small open, capital-importing economy. A trade-off between private welfare and tax revenue is encountered in maximizing social welfare. Nonetheless, lowering capital taxes and raising consumption taxes can increase both private welfare and tax revenue if the initial tax rates are not optimal. In addition, a tax reform by this fashion is a likely response to a rise in the foreign rate of return on capital.

Visionnaire 2013

Visionnaire: a screening of graduate and masters short films: Wolf, Shaw, Mawrgan. Treasure, Horton, Kyle. Descent, Coughlin, Michael. Cut, Hendriks, Frouwke. A Silent Waltz, Lefoe, Kelsey; Elliott, Isaac; Nanayakkara, Ashini; Tillett, Michael; Teychenne, Danielle; Axiaq, Christopher. Siren, Brander, Dale; Heath, Katherine, Stielow, Rebecca; Bellamy, Edward; Boldeman, Emma; Dong, Jing. The Man Who Cared Too Much, Milner, Robert; Di Quinzio, Carl; Lancaster, Tabitha; Hennequin, Blake; Pinnock, Alicia; Hay, Sarah. Perspective, Hampson, Matt; Gubieski, Alex; Lam, Yen; Jokomo, Nyasha; Carew, Keanan; Burr, Harrison. A Cut Above, Giebler, Heather; Blythe, Carolyn, Carell, Eden; Lai, Cyrus; Rattenbury, Todd; Gatsios, Isaac. Pumpkins, Davies, Brooke; Scharf, Harrison; Jayawardena, Kevin; Lee, Sebastian; Haidari, Ali; Morris, Travis. The Runner, Mitchinson, Liz; Kelly, Rhin; Fomin, Nina; Luxa, Haili; Williams-Pate, Robert; Karoutsos, Antonios. Doors, Sadeghi, Sam; Ward, Ben; Thomson, Alana; Brown, Sam; Earl, Richard; Watterson, James. Daddy’s Little Girl, Dahlenburg, Zoe; Atalla, Joanna; McConnell, Adam; Perri, Tim; Turnbull, Sophie; Leszczynski, Dale. Hopscotch, Egenes, Silge Vikor; Burns, Matt; Fuller, Kelly; Wurm, Christopher; Parker, Stephen; Carson, Brooke Aung.