The need for qualitative methodologies in cancer cachexia research

Background: Cancer cachexia is not well understood or managed in clinical practice (Delmore 2000; Poole and Froggatt 2002). Whilst a dedicated effort has been made towards understanding the biological processes of the syndrome, little attention has been paid to its multidimensional impact. This is despite previous qualitative research, enriching our understanding of the holistic impact of the syndrome which traditional quantitative methods could not have uncovered (Reid 2007).

Aim: The aim of this study is to determine the adequacy of the existing clinical knowledge base of cancer cachexia management.

Methods: A systematic critical review of the literature on cancer cachexia was undertaken.

Results: There is a need to develop protocols for care delivery, which move beyond a purely biological approach to care towards a more holistic approach. This can only be achieved by gaining the perspectives of those who are involved in care delivery to advanced cancer patients with cachexia and their families using qualitative methodologies.

Conclusions: Cancer cachexia is a complex, challenging syndrome, which must be understood from a holistic bio-psychosocial model of care in order to meet the multidimensional needs of this client population. The perspectives of those involved in care delivery is required in order to contribute to a knowledge base which will inform the development of interventions directed at empowering patients and their families to understand cancer cachexia and recognise it as part of the disease process.

The rise of the digital citizen-stakeholder: rebalancing multistakeholder governance

The principle feature in the evolution of the internet has been its ever growing reach to include old and young, rich and poor. The internet’s ever encroaching presence has transported it from our desktop to our pocket and into our glasses. This is illustrated in the Internet Society Questionnaire on Multistakeholder Governance, which found the main factors affecting change in the Internet governance landscape were more users online from more countries and the influence of the internet over daily life. The omnipresence of the internet is self- perpetuating; its usefulness grows with every new user and every new piece of data uploaded. The advent of social media and the creation of a virtual presence for each of us, even when we are not physically present or ‘logged on’, means we are fast approaching the point where we are all connected, to everyone else, all the time. We have moved far beyond the point where governments can claim to represent our views which evolve constantly rather than being measured in electoral cycles.
The shift, which has seen citizens as creators of content rather than consumers of it, has undermined the centralist view of democracy and created an environment of wiki democracy or crowd sourced democracy. This is at the heart of what is generally known as Web 2.0, and widely considered to be a positive, democratising force. However, we argue, there are worrying elements here too. Government does not always deliver on the promise of the networked society as it involves citizens and others in the process of government. Also a number of key internet companies have emerged as powerful intermediaries harnessing the efforts of the many, and re- using and re-selling the products and data of content providers in the Web 2.0 environment. A discourse about openness and transparency has been offered as a democratising rationale but much of this masks an uneven relationship where the value of online activity flows not to the creators of content but to those who own the channels of communication and the metadata that they produce.
In this context the state is just one stakeholder in the mix of influencers and opinion formers impacting on our behaviours, and indeed our ideas of what is public. The question of what it means to create or own something, and how all these new relationships to be ordered and governed are subject to fundamental change. While government can often appear slow, unwieldy and even irrelevant in much of this context, there remains a need for some sort of political control to deal with the challenges that technology creates but cannot by itself control. In order for the internet to continue to evolve successfully both technically and socially it is critical that the multistakeholder nature of internet governance be understood and acknowledged, and perhaps to an extent, re- balanced. Stakeholders can no longer be classified in the broad headings of government, private sector and civil society, and their roles seen as some sort of benign and open co-production. Each user of the internet has a stake in its efficacy and each by their presence and participation is contributing to the experience, positive or negative of other users as well as to the commercial success or otherwise of various online service providers. However stakeholders have neither an equal role nor an equal share. The unequal relationship between the providers of content and those who simple package up and transmit that content - while harvesting the valuable data thus produced - needs to be addressed. Arguably this suggests a role for government that involves it moving beyond simply celebrating and facilitating the on- going technological revolution. This paper reviews the shifting landscape of stakeholders and their contribution to the efficacy of the internet. It will look to critically evaluate the primacy of the individual as the key stakeholder and their supposed developing empowerment within the ever growing sea of data. It also looks at the role of individuals in wider governance roles. Governments in a number of jurisdictions have sought to engage, consult or empower citizens through technology but in general these attempts have had little appeal. Citizens have been too busy engaging, consulting and empowering each other to pay much attention to what their governments are up to. George Orwell’s view of the future has not come to pass; in fact the internet has insured the opposite scenario has come to pass. There is no big brother but we are all looking over each other’s shoulder all the time, while at the same time a number of big corporations are capturing and selling all this collective endeavour back to us.

Reaching out: medical students leading in local communities

Background: Queen's University Red Cross is a medical student-led volunteer group with a key aim of promoting social change within local communities and empowering young people to aspire to higher education. We describe ‘The Personal Development Certificate’, a 12–week community development programme devised by third-year medical students at Queen's University Belfast to target young people who are lacking educational motivation, are disengaged at home or are marginalised through social circumstances.

Context: Community-based education is of increasing importance within undergraduate and postgraduate medical education in the UK, and further afield. We evaluated the perceived improvements in key skills such as teamwork, leadership, communication, and problem solving in students following participation in this programme, and the extent to which their attitude and appreciation of community-based medicine changed.

Innovation: Following facilitation of this community-based initiative, all students reported a perceived improvement in the acquired skill sets. Students made strong links from this programme to previous clinical experiences and appreciated the opportunity to translate a series of classroom-learned skills to real-life environments and interactions. The students’ appreciation and understanding of community-based medicine was the single most improved area of our evaluation.

Implications: We have demonstrated that medical students possess the skills to develop and facilitate their own educational projects. Non-clinical, student-led community projects have the potential to be reproduced using recognised frameworks and guidelines to complement the current undergraduate medical curriculum

Disabled women’s experiences of accessing and utilising maternity services when they are affected by domestic abuse: a critical incident technique study

Background: Women and their babies are entitled to equal access to high quality maternity care. However, when women fit into two or more categories of vulnerability they can face multiple, compound barriers to accessing and utilising services. Disabled women are up to three times more likely to experience domestic abuse than non-disabled women. Domestic abuse may compromise health service access and utilisation and disabled people in general have suboptimal access to healthcare services. Despite this, little is known about the compounding effects of disability and domestic abuse on women’s access to maternity care.

Methods: The aim of the study was to identify how women approach maternity care services, their expectations of services and whether they are able to get the type of care that they need and want. We conducted a qualitative, Critical Incident Technique study in Scotland. Theoretically we drew on Andersen’s model of healthcare use. The model was congruent with our interest in women’s intended/actual use of maternity services and the facilitators and barriers
impacting their access to care. Data were generated during 2013 using one-to-one interviews.

Results: Five women took part and collectively reported 45 critical incidents relating to accessing and utilising maternity services. Mapped to the underpinning theoretical framework, our findings show how the four domains of attitudes; knowledge; social norms; and perceived control are important factors shaping maternity care experiences.

Conclusions: Positive staff attitude and empowering women to have control over their own care is crucial in influencing women’s access to and utilisation of maternity healthcare services. Moreover these are cyclical, with the consequences and outcomes of healthcare use becoming part of the enabling or disabling factors affecting future healthcare decisions.Further consideration needs to be given to the development of strategies to access and recruit women in these circumstances. This will provide an opportunity for under-represented and silenced voices to be heard.

Innovative interprofessional teaching session on labour and childbirth for undergraduate medical and midwifery students

There is an increasing recognition of the need to improve interprofessional relationships within clinical practice (Midwifery 2020, 2010). Evidence supports the assertion that healthcare professionals who are able to communicate and work effectively together and who have a mutual respect and understanding for one another’s roles will provide a higher standard of care (McPherson et al, 2001; Miers et al, 2005; Begley, 2008). The joint Royal College of Obstetrics & Gynaecologists(RCOG) / Royal College of Midwives (RCM) report (2008 Page 8) on clinical learning environment and recruitment recommended that “Inter-professional learning strategies should be introduced and supported at an early stage in the medical and midwifery undergraduate students' experience and continued throughout training.” Providing interprofessional education within a University setting offers an opportunity for a non-threatening learning environment where students can develop confidence and build collaborative working relationships with one another (Saxell et al, 2009).Further research supports the influence of effective team working on increased client satisfaction. Additionally it identifies that the integration of interprofessional learning into a curriculum improves students’ abilities to interact professionally and provides a better understanding of role identification within the workplace than students who have only been exposed to uniprofessional education (Meterko et al, 2004; Pollard and Miers, 2008; Siassakos, et al, 2009; Wilhelmsson et al, 2011; Murray-Davis et al, 2012). An interprofessional education indicative has been developed by teaching staff from the School of Nursing and Midwifery and School of Medicine at Queen’s University Belfast. The aim of the collaboration was to enhance interprofessional learning by providing an opportunity for medical students and midwifery students to interact and communicate prior to medical students undertaking their obstetrics and gynaecology placements. This has improved medical students placement experience by facilitating them to learn about the process of birth and familiarisation of the delivery suite environment and it also has the potential to enhance interprofessional relationships. Midwifery students benefit through the provision of an opportunity to teach and facilitate learning in relation to normal labour and birth and has provided them with an opportunity to build stronger and more positive relationships with another profession. This opportunity also provides a positive, confidence building forum where midwifery students utilise teaching and learning strategies which would be transferable to their professional role as registered midwives. The midwifery students were provided with an outline agenda in relation to content for the workshop, but then were allowed creative licence with regard to delivery of the workshop. The interactive workshops are undertaken within the University’s clinical education centre, utilising low fidelity simulation. The sessions are delivered 6 times per year and precede the medical students’ obstetric/gynaecology placement. All 4th year medical and final year midwifery students have an opportunity to participate. Preliminary evaluations of the workshops have been positive from both midwifery and medical students. The teaching sessions provided both midwifery and medical students with an introduction to inter professional learning and gave them an opportunity to learn about and respect each other’s roles. The midwifery students have commented on the enjoyable aspects of team working for preparing for the workshop and also the confidence gained from teaching medical students. The medical students have evaluated the teaching by midwifery students positively and felt that it lowered their anxiety levels going into the labour setting. A number of midwifery and medical students have subsequently worked with one another within the practice setting which has been recognised as beneficial. Both Schools have recognised the benefits of interprofessional education and have subsequently made a commitment to embed it within each curriculum.

Perspectives on social citizenship in the EU – from status positivus to status socialis activus via two forms of transnational solidarity

Ever since the inauguration of EU citizenship, elements of social citizenship have been on the agenda of European integration. European level social benefits were proposed early on, and demands for collective labour rights have followed suit. This chapter uses the theoretical umbrella of transnational social citizenship in order to link transnational access to social benefits and collective labour rights. It promotes transnational rights as the best way to conceptualise EU social citizenship as an institution enabling the enjoyment of EU integration without being forced to forego social rights at other levels. Such a perspective sits well in a collection on EU citizenship and federalism, since it simultaneously challenges demands of renationalisation of social rights in the EU and pleas to reduce EU-level citizenship rights to a merely liberal dimension. Social citizenship as promoted here requires an interactive conceptualisation of regulatory and judicial powers at different levels of government as typical for federal systems.
In linking citizenship with human rights the chapter highlights different statuses of citizens. It argues that the rights constituted by social citizenship derive from a status positivus and a status socialis activus, expanding the time-honoured categories of Jellinek. This concept is developed further by linking the notions of receptive solidarity to the status positivus and the notion of participative solidarity to the status socialis activus. In relation to European Union citizenship it promotes a sustainable transnational social citizenship catering for receptive and participative solidarity.
These ideas contrast with most current discourses on EU citizenship. The stress on social citizenship takes issue with a retreat to mere liberalist notions of EU-level citizenship, and the stress on rights takes issue with conceptualising EU citizenship as a community bond with obligations, downplaying the empowering potential of rights. The difficulty of conceptualising transnational social citizenship is to avoid, on the one hand, taking up the tune of populist discourses imagining those moving beyond state borders as a threat to national social citizenship and, on the other hand, to reject the legitimate fears of those remaining at home of creating rupture in the social fabric of Europe’s society. Promoting transnational social citizenship rights based on receptive and participative solidarity the present chapter aims to contribute to avoiding these pitfalls.

Emotions and identity in the figured world of becoming a doctor

CONTEXT: There is little room in clerkship curricula for students to express emotions, particularly those associated with the development of a caring identity. Yet it is recognised that competence, alone, does not make a good doctor. We therefore set out to explore the relationship between emotions and identity in clerkship education. Our exploration was conceptually oriented towards Figured Worlds theory, which is linked to Bakhtin's theory of dialogism.

METHODS: Nine female and one male member of a mixed student cohort kept audio-diaries and participated in both semi-structured and cognitive individual interviews. The researchers identified 43 emotionally salient utterances in the dataset and subjected them to critical discourse analysis. They applied Figured Worlds constructs to within-case and cross-case analyses, supporting one another's reflexivity and openness to different interpretations, and constantly comparing their evolving interpretation against the complete set of transcripts.

RESULTS: Students' emotions were closely related to their identity development in the world of medicine. Patients were disempowered by their illnesses. Doctors were powerful because they could treat those illnesses. Students expressed positive emotions when they were granted positions in the world of medicine and were able to identify with the figures of doctors or other health professionals. They identified with doctors who behaved in caring and professionally appropriate ways towards patients and supportively towards students. Students expressed negative emotions when they were unable to develop their identities.

CONCLUSIONS: Critical discourse analysis has uncovered a link between students' emotions and their identity development in the powerful world of becoming and being a doctor. At present, identity development, emotions and power are mostly tacit in undergraduate clinical curricula. We speculate that helping students to express emotions and exercise power in the most effective ways might help them to develop caring identities.

Delivering a Research-Enabled Multistakeholder Partnership for Enhanced Patient Care at a Population Level: The Northern Ireland Comprehensive Cancer Program

The last 20 years have seen significant advances in cancer care in Northern Ireland, leading to measureable improvements in patient outcomes. Crucial to this transformation has been an ethos that recognizes the primacy role of research in effecting heath care change. The authors' model of a cross-sectoral partnership that unites patients, scientists, health care professionals, hospital trusts, bioindustry, and government agencies can be truly transformative, empowering tripartite clinical-academic-industry efforts that have already yielded significant benefit and will continue to inform strategy and its implementation going forward.

From brown envelopes to community benefits: the co-option of planning gain agreements under deepening neoliberalism

The provision of physical and social infrastructure in the form of roads, green spaces and community facilities has traditionally been provided for by the state through the general taxation system. However, as the state has been transformed along more neoliberal lines, the private sector is increasingly relied upon to deliver public goods and services. Planning gain agreements have flourished within this context by offering another vehicle through which local facilities are privately funded. Whilst these agreements reflect the broader dynamics of neoliberalism, they are commonly viewed as a tool which can be employed to challenge these very dynamics by empowering local communities to secure more just planning outcomes. This paper counters such claims. Based on evidence gathered from 80 interviews with planners, councillors, developers and community groups in Ireland, the paper demonstrates how planning gain agreements have been strategically redeployed by the holders of political and economic power to serve their own ends. In seeking to understand why and how this has occurred, specific consideration is given to the changing power dynamics between the state and private capital under neoliberalism. The paper highlights how institutional arrangements have enabled developers to infiltrate the political sphere in more subtle and implicit ways than ever before. We conclude by arguing that planning gain must be understood as a mechanism which has been manipulated in ways which essentially work to preserve and enhance, rather than redress, existing power imbalances in the planning system by facilitating large scale transfers of wealth upwards in society.

Barriers and facilitators to cooking from 'scratch' using basic or raw ingredients: A qualitative interview study

Background: Previous research has highlighted an ambiguity in understanding cooking related terminology and a number of barriers and facilitators to home meal preparation. However, meals prepared in the home still include convenience products (typically high in sugars, fats and sodium) which can have negative effects on health. Therefore, this study aimed to qualitatively explore: (1) how individuals define cooking from ‘scratch’, and (2) their barriers and facilitators to cooking with basic ingredients.
Methods: 27 semi-structured interviews were conducted with participants (aged 18-58 years) living on the island of Ireland, eliciting definitions of ‘cooking from scratch’ and exploring the reasons participants cook in a particular way. The interviews were professionally transcribed verbatim and Nvivo 10 was used for an inductive thematic analysis.
Results: Our results highlighted that although cooking from ‘scratch’ lacks a single definition, participants viewed it as optimal cooking. Barriers to cooking with raw ingredients included: 1) time pressures; (2) desire to save money; (3) desire for effortless meals; (4) family food preferences; and (5) effect of kitchen disasters. Facilitators included: 1) desire to eat for health and well-being; (2) creative inspiration; (3) ability to plan and prepare meals ahead of time; and (4) greater self-efficacy in one’s cooking ability.
Conclusions: Our findings contribute to understanding how individuals define cooking from ‘scratch’, and barriers and facilitators to cooking with raw ingredients. Interventions should focus on practical sessions to increase cooking self-efficacy; highlight the importance of planning ahead and teach methods such as batch cooking and freezing to facilitate cooking from scratch.

Advanced Business Simulations-Incorporating business and process execution data

Key Performance Indicators (KPIs) and their predictions are widely used by the enterprises for informed decision making. Nevertheless , a very important factor, which is generally overlooked, is that the top level strategic KPIs are actually driven by the operational level business processes. These two domains are, however, mostly segregated and analysed in silos with different Business Intelligence solutions. In this paper, we are proposing an approach for advanced Business Simulations, which converges the two domains by utilising process execution & business data, and concepts from Business Dynamics (BD) and Business Ontologies, to promote better system understanding and detailed KPI predictions. Our approach incorporates the automated creation of Causal Loop Diagrams, thus empowering the analyst to critically examine the complex dependencies hidden in the massive amounts of available enterprise data. We have further evaluated our proposed approach in the context of a retail use-case that involved verification of the automatically generated causal models by a domain expert.

From teaching clinician to research academic- changing focus within UK nurse education; a discussion paper

The focus of this discussion paper is the need for effective professional socialisation of student nurses and the degree to which core values and culture are transferred through University schools of nursing, the academic teaching staff and to the student nurses.
UK schools of nursing had progressively transferred into university institutions more than two decades ago. Schools of nursing and the teaching academics within them, to a greater or lesser extent, impact on and help to professionally socialize student nurses. Professed core values of universities whilst including a focus on excellence and innovation, perhaps also include, collegiality, integrity and social commitment to care. These are all qualities, which should be core values and elements
of the transferable professional culture to student nurses. Notwithstanding the professed core values, at least in some areas of UK universities there is some evidence of increasing competition and a disproportionate research market driven focus. This can reflect back into schools of nursing and is inconsistent with nursing professional values.

This paper explores the degree to which the professed core values of universities and the institutional culture are necessarily enacted, and the degree to which
any dissonance in the institutions professed/enacted core values and culture reflect through the schools of nursing and impact in the professional socialisation of student nurses. The paper also explores the degree to which effective leadership in schools of nursing can help to maintain professional core values and a culture of nursing professional

“There’s a Catch-22”. The complexities of pain management for people with advanced dementia nearing the end of life: a qualitative exploration of physicians’ perspectives

Background: Pain management is a cornerstone of palliative care. The clinical issues encountered by physicians when managing pain in patients dying with advanced dementia, and how these may impact on prescribing and treatment, are unknown. Aim: To explore physicians’ experiences of pain management for patients nearing the end of life, the impact of these on prescribing and treatment approaches, and the methods employed to overcome these challenges. Design: Qualitative, semi-structured interview study exploring: barriers to and facilitators of pain management, prescribing and treatment decisions, and training needs. Thematic analysis was used to elicit key themes. Settings/Participants: Twenty-three physicians, responsible for treating patients with advanced dementia approaching the end of life, were recruited from primary care (n=9), psychiatry (n=7) and hospice care (n=7). Results: Six themes emerged: diagnosing pain, complex prescribing and treatment approaches, side-effects and adverse events, route of administration, importance of sharing knowledge and training needs. Knowledge exchange was often practised through liaison with physicians from other specialties. Cross-specialty mentoring, and the creation of knowledge networks were believed to improve pain management in this patient population. Conclusions: Pain management in end-stage dementia is complex, requiring cross-population of knowledge between palliative care specialists and non-specialists, in addition to collateral information provided by other health professionals and patients’ families. Regular, cost- and time-effective mentoring and ongoing professional development are perceived to be essential in empowering physicians to meet clinical challenges in this area.