Guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients

Support for family caregivers, including bereavement follow-up, is a core function of palliative care. Many caregivers acknowledge positive aspects associated with the role; however a considerable proportion will experience poor psychological, social, financial, spiritual, and physical well-being and some will suffer from complicated grief. Many family caregivers have unmet needs and would like more information, preparation, and support to assist them in the caregiving role. There is a shortage of evidence-based strategies to guide health professionals in providing optimal support while the caregiver is providing care and after the patient's death.

Getting to the bottom of arsenic standards and guidelines

Public health policy for arsenic needs to better reflect the ability to detect the risk(s).

A Delicate Balancing Act: Negotiating with Gatekeepers for Ethical Research When Researching Minority Communities

Research and processes of knowledge production are often based on racialised and imperialistic frameworks that have either led to the exclusion or pathologisation of minority groups. Researchers address issues of exclusion by adopting recruitment strategies that involve negotiating with gatekeepers to ensure the inclusion of minority or marginalised groups. This often involves in-depth scrutiny of gatekeepers and requires the researchers to negotiate deals and to make personal disclosures. However, there remains relatively little discussion on the pragmatic ethical issues facing researchers in the field as a result of these interactions.
This paper suggests that interactions with gatekeepers present ethical issues that can be effectively addressed and managed by researchers through the exercise of phronesis. This allows researchers to make critical ethical decisions based on the specific characteristics of the research sites and subjects, not least of which are those issues that emerge as a consequence of researcher positionality. Such decisions are not necessarily identified or accommodated through bureaucratic processes which govern research ethics. We advance the notion of research ethics as an ongoing process that requires researcher skills and engagement, rather than one where it is a one off bureaucratic exercise.

Availability of stage at diagnosis, cancer treatment delay and compliance with cancer guidelines as cancer registry indicators for cancer care in Europe:Results of EUROCHIP-3 survey

EUROCHIP (European Cancer Health Indicators Project) focuses on understanding inequalities in the cancer burden, care and survival by the indicators "stage at diagnosis," "cancer treatment delay" and "compliance with cancer guidelines" as the most important indicators. Our study aims at providing insight in whether cancer registries collect well-defined variables to determine these indicators in a comparative way. Eighty-six general European population-based cancer registries (PBCR) from 32 countries responded to the questionnaire, which was developed by EUROCHIP in collaboration with ENCR (European Network of Cancer Registries) and EUROCOURSE. Only 15% of all the PBCR in EU had all three indicators available. The indicator "stage at diagnosis" was gathered for at least one cancer site by 81% (using TNM in 39%). Variables for the indicator "cancer treatment delay" were collected by 37%. Availability of type of treatment (30%), surgery date (36%), starting date of radiotherapy (26%) and starting date of chemotherapy (23%) resulted in 15% of the PBCRs to be able to gather the indicator "compliance to guidelines". Lack of data source access and qualified staff were the major reasons for not collecting all the variables. In conclusion, based on self-reporting, a few of the participating PBCRs had data available which could be used for clinical audits, evaluation of cancer care projects, survival and for monitoring national cancer control strategies. Extra efforts should be made to improve this very efficient tool to compare cancer burden and the effects of the national cancer plans over Europe and to learn from each other. © 2012 UICC.

Molecular diagnosis of the myeloproliferative neoplasms: UK guidelines for the detection of JAK2 V617F and other relevant mutations

Molecular genetic assays for the detection of the JAK2 V617F (c.1849G>T) and other pathogenetic mutations within JAK2 exon 12 and MPL exon 10 are part of the routine diagnostic workup for patients presenting with erythrocytosis, thrombocytosis or otherwise suspected to have a myeloproliferative neoplasm. A wide choice of techniques are available for the detection of these mutations, leading to potential difficulties for clinical laboratories in deciding upon the most appropriate assay, which can lead to problems with inter-laboratory standardization. Here, we discuss the most important issues for a clinical diagnostic laboratory in choosing a technique, particularly for detection of the JAK2 V617F mutation at diagnosis. The JAK2 V617F detection assay should be both specific and sensitive enough to detect a mutant allele burden as low as 13%. Indeed, the use of sensitive assays increases the detection rate of the JAK2 V617F mutation within myeloproliferative neoplasms. Given their diagnostic relevance, it is also beneficial and relatively straightforward to screen JAK2 V617F negative patients for JAK2 exon 12 mutations (in the case of erythrocytosis) or MPL exon 10 mutations (thrombocytosis or myelofibrosis) using appropriate assays. Molecular results should be considered in the context of clinical findings and other haematological or laboratory results.

Focus group interviews:a guide for palliative care researchers and clinicians

The focus group interview is an increasingly common qualitative research method used by health professionals. General approaches to conducting focus groups have been published. There has, however, been minimal exploration of issues regarding the use of focus groups with palliative care populations and data analysis procedures have been underreported. The aim of this paper is to provide a guide for conducting focus groups drawing on palliative care examples. A succinct outline of why, when and how to use focus groups is offered. Key ethical and practical issues are explored as well as considerations for data analysis. This guide offers researchers and clinicians fundamental strategies for the use of focus groups within the palliative care context.

Beyond ourselves: Passion and the dark side of identification in an ethical organization

How are organizational discourses enacted by people at work? In this article, instead of treating subjects as somewhat distinct from such discourses, I argue that the two are inescapably intertwined. The concept of 'ek-stasis' helps us to understand this. Ekstasis invokes an idea of the 'self ' that, through processes of identification, is always located outside of itself, embedded in a wider sociality. I explore this dynamic through an in-depth study of the powerful discourse of 'ethical living', and its enactment in one contemporary development sector organization, EWH. This ek-static enactment was somewhat ambivalent: involving mutual recognition between colleagues, but also processes of exclusion and policing. I highlight how attention to feeling and passion was important in understanding the relation between workplace discourse and identification processes, in this setting. This study shows that a view of workplace selves as ek-static is useful for understanding the enactment of discourse at work, and that this enactment can be both passionate and ambivalent. © The Author(s) 2010.

An Ethical Production of Place:A Case for Economy in Architectural Design

Architects typically interpret Heidegger to mean that dwelling in the Black Forest, was more authentic than living in an industrialised society however we cannot turn back the clock so we are confronted with the reality of modernisation. Since the Second World War production has shifted from material to immaterial assets. Increasingly place is believed to offer resistance to this fluidity, but this belief can conversely be viewed as expressing a sublimated anxiety about our role in the world – the need to create buildings that are self-consciously contextual suggests that we may no longer be rooted in material places, but in immaterial relations.
This issue has been pondered by David Harvey in his paper From Place to Space and Back Again where he argues that the role of place in legitimising identity is ultimately a political process, as the interpretation of its meaning is dependent on whose interpretation it is. Doreen Massey has found that different classes of people are more or less mobile and that mobility is related to class and education rather than to nationality or geography. These thinkers point to a different set of questions than the usual space/place divide – how can we begin to address the economic mediation of spatial production to develop an ethical production of place? Part of the answer is provided by the French architectural practice Lacaton Vassal in their book Plus. They ask themselves how to produce more space for the same cost so that people can enjoy a better quality of life. Another French practitioner, Patrick Bouchain, has argued that architect’s fees should be inversely proportional to the amount of material resources that they consume. These approaches use economics as a starting point for generating architectural form and point to more ethical possibilities for architectural practice

Guidelines and considerations for conducting experiments using tissue microarrays

Tissue microarrays (TMAs) represent a powerful method for undertaking large-scale tissue-based biomarker studies. While TMAs offer several advantages, there are a number of issues specific to their use which need to be considered when employing this method. Given the investment in TMA-based research, guidance on design and execution of experiments will be of benefit and should help researchers new to TMA-based studies to avoid known pitfalls. Furthermore, a consensus on quality standards for TMA-based experiments should improve the robustness and reproducibility of studies, thereby increasing the likelihood of identifying clinically useful biomarkers. In order to address these issues, the National Cancer Research Institute Biomarker and Imaging Clinical Studies Group organized a 1-day TMA workshop held in Nottingham in May 2012. The document herein summarizes the conclusions from the workshop. It includes guidance and considerations on all aspects of TMA-based research, including the pre-analytical stages of experimental design, the analytical stages of data acquisition, and the postanalytical stages of data analysis. A checklist is presented which can be used both for planning a TMA experiment and interpreting the results of such an experiment. For studies of cancer biomarkers, this checklist could be used as a supplement to the REMARK guidelines.