Exploring access to end of life care for ethnic minorities with end stage kidney disease through recruitment in action research

BACKGROUND: Variation in provision of palliative care in kidney services and practitioner concerns to provide equitable access led to the development of this study which focussed on the perspectives of South Asian patients and their care providers. As people with a South Asian background experience a higher risk of Type 2 Diabetes (T2DM) and end stage kidney failure (ESKF) compared to the majority population but wait longer for a transplant, there is a need for end of life care to be accessible for this group of patients. Furthermore because non English speakers and people at end of life are often excluded from research there is a dearth of research evidence with which to inform service improvement. This paper aims to explore issues relating to the process of recruitment of patients for a research project which contribute to our understanding of access to end of life care for ethnic minority patients in the kidney setting. METHODS: The study employed an action research methodology with interviews and focus groups to capture and reflect on the process of engaging with South Asian patients about end of life care. Researchers and kidney care clinicians on four NHS sites in the UK recruited South Asian patients with ESKF who were requiring end of life care to take part in individual interviews; and other clinicians who provided care to South Asian kidney patients at end of life to take part in focus groups exploring end of life care issues. In action research planning, action and evaluation are interlinked and data were analysed with emergent themes fed back to care providers through the research cycle. Reflections on the process of patient recruitment generated focus group discussions about access which were analysed thematically and reported here. RESULTS: Sixteen patients were recruited to interview and 45 different care providers took part in 14 focus groups across the sites. The process of recruiting patients to interview and subsequent focus group data highlighted some of the key issues concerning access to end of life care. These were: the identification of patients approaching end of life; and their awareness of end of life care; language barriers and informal carers' roles in mediating communication; and contrasting cultures in end of life kidney care. CONCLUSIONS: Reflection on the process of recruitment in this action research study provided insight into the complex scenario of end of life in kidney care. Some of the emerging issues such as the difficulty identifying patients are likely to be common across all patient groups, whilst others concerning language barriers and third party communication are more specific to ethnic minorities. A focus on South Asian ethnicity contributes to better understanding of patient perspectives and generic concepts as well as access to end of life kidney care for this group of patients in the UK. Action research was a useful methodology for achieving this and for informing future research to include informal carers and other ethnic groups.Peer reviewedFinal Published versio

Dangerous liaisons: A ‘Big Four’ framework that provides a ‘hint’ to understanding an adversary’s strategy for influence.

Beliefs, attitudes and behaviour can be influenced in myriad ways. History has consistently demonstrated the struggle between protagonist and antagonist to win over ‘the people’, often through the simultaneous promotion and destruction of places, icons, myths, symbols and stories. Neil Verrall, Mark Dunkley and Toby Gane, three army reserve officers, and Richard Byrne, an independent geographer, describe four interconnected ways in which hostile state actors or non-state terrorist groups might attempt to influence their target audiences as part of strategy

Snake bite mimicking brain death

A 6 year old girl woke up with pain and increasing swelling over the left hand and difficulty in breathing. On examination, she had swelling of the left forearm and hand, flaccid quadriparesis and was in respiratory failure requiring mechanical ventilation. Two clean puncture wounds were identified on the left thumb. A provisional diagnosis of snake bite with severe envenomation was made and she was given anti snake venom therapy. Over a period of about 4 hours her weakness progressed. She became areflexic, developed internal and external ophthalmoplegia and loss of other brain stem reflexes mimicking brain death. Mechanical ventilation was continued despite features suggestive of brain stem dysfunction. About 36 hours after ventilation she showed a flicker of movement of her fingers and gradually the power improved. She was weaned off the ventilator and extubated after 5 days. External ophthalmoplegia is an established association with cobra envenomation, but, this combination of internal and external ophthalmoplegia can mimic brain death and pose a dilemma to the caregivers regarding continuation of therapy

‘Media events’ reconsidered: from ritual theory to simulation and performativity

This paper re-examines the long-established notion of ‘media events’ by contrasting and critically appraising three distinct approaches to the question of media events. These are: ritual theory associated with Daniel Dayan and Elihu Katz, secondly, Jean Baudrillard’s approach rooted in his notions of simulation and ‘non-events’ and, finally, the more recent performative approaches to media and mediation. I take Sarah Kember and Joanna Zylinska’s reading of media events presented in Life After New Media (2012) as exemplary of the performative approach. An argument is made that the accounts of media events offered by performative approaches add very little, and, indeed, lack the critical insightfulness of the earlier approaches. Both ritual theory and Baudrillard’s thought are briefly reappraised and, against Nick Couldry, I try to show that these accounts are not characterised by binary and reductive thinking. The major misunderstandings concern the nature of the sacred and profane dualism and the further dualisms developed in Baudrillard’s thought, particularly the figures of implosion and reversibility. Finally, Baudrillard’s position on technology is addressed and the paper concludes with the suggestion that his account is not solely negative, since technological developments are not only at the mercy of ironic reversals they may also enable new rituals of disappearance

Mapping ecologically sensitive, significant and salient areas of Western Ghats: proposed protocols and methodology

The Western Ghats Ecology Expert Panel (WGEEP) of the Ministry of Environment and Forests, Government of India (GOI) has been asked to identify ecologically sensitive areas (ESAs) along the Western Ghats, and to suggest how to manage them. The concept of ESAs has been extensively discussed in the literature. Several ESAs have been set up in India over the last 22 years under the Environment Protection Act, 1986, and a GOI committee under the chairmanship of Pranob Sen has proposed certain criteria for identification of ESAs. However, WGEEP noted that we still lack a global consensus either on the criteria to define ESAs or on a workable methodology to identify them. Furthermore, there are no clear guidelines on the management regime that should prevail in ESAs, and the Pranob Sen Committee has not addressed this issue at all. Hence, WGEEP decided to undertake an exercise of defining ESAs and developing a workable methodology to assign levels of ecological significance/sensitivity as a first step towards putting ESAs on the map of the Western Ghats. This article provides a report on the outcome of a series of discussions and consultations held by WGEEP to build a consensus on defining and mapping ESAs. It hopes to provoke discussion and feedback from a wider section of experts, with the aim of finalizing a generic methodology for mapping ESAs in other ecologically sign ificant, biodiversity-rich areas within and outside the country. We hope to shortly prepare a companion paper that will address the equally vital management issues

Human and value sensitive aspects of mobile app design: a Foucauldian perspective

Value sensitive concerns remain relatively neglected by software design processes leading to potential failure of technology acceptance. By drawing upon an inter-disciplinary study that employed participatory design methods to develop mobile apps in the domain of youth justice, this paper examines a critical example of an unintended consequence that created user concerns around Focauldian concepts including power, authority, surveillance and governmentality. The primary aim of this study was to design, deploy and evaluate social technology that may help to promote better engagement between case workers and young people to help reduce recidivism, and support young people’s transition towards social inclusion in society. A total of 140 participants including practitioners (n=79), and young people (n=61) contributed to the data collection via surveys, focus groups and one-one interviews. The paper contributes an important theoretically located discussion around both how co-design is helpful in giving ‘voice’ to key stakeholders in the research process and observing the risk that competing voices may lead to tensions and unintended outcomes. In doing so, software developers are exposed to theories from social science that have significant impact on their product

Between the Post and the Com-Post:Examining the Postdigital ‘Work’ of a Prefix

In examining the work of the prefix ‘post’, we aim to contribute to the current postdigital dialogue. Our paper does not provide a rationale for the use of ‘postdigital’ in the title of this journal: that has been thoroughly explored elsewhere. We want instead to consider the work the prefix might do. We look at ‘post’, as it appears to ‘act’ in the terms of ‘postmodernism’ and ‘posthumanism’, suggesting that modernism and humanism are in need of questioning and reworking. We also examine what gets ‘post-ed’, or sometimes ‘com-posted’. (Com- is another interesting prefix, meaning ‘with’.) We then consider how these inquiries inform our understanding of a ‘postdigital reality’ that humans now inhabit. We understand this as a space of learning, struggle, and hope, where ‘old’ and ‘new’ media are now ‘cohabiting artefacts’ that enmesh with the economy, politics and culture. In entering this postdigital age, there really is no turning back from a convergence of the traditional and the digital. However, this is not simply a debate about technological and non-technological media. The postdigital throws up new challenges and possibilities across all aspects of social life. We believe this opens up new avenues too, for considering ways that discourse (language-in-use) shapes how we experience the postdigital