Autopoiesis and the Home Confined Consumer: The Role of Personal Communities

Purpose – The purpose of this paper is to explore the consumption of a personal community and its role in the everyday life of the home-confined consumer. Design/methodology/approach – Using a Radical Constructivist approach, three cases of home confinement were explored in depth over a period of two years. Ongoing “conversations” captured the consumption experiences with personal communities. Findings – In relation to the home-confined context, the ability to attain individuality, empowerment and creativity are all heightened as a result of personal community construction. An underlying concern for home-confined consumers is their removal from independent living to institutionalized living, and, as a result the need to construct, manage and maintain a personal community is of major concern. Research limitations/implications – Although the study addresses a home-confined context, it is nevertheless reflective of concerns that are significant to all consumers, namely the attainment of individuality and independence irrespective of marginalization or not. Practical implications – The importance of a personal community in terms of both self-empowerment and self-identity with respect to marginalized groups and vulnerable individuals should not be underestimated. The supporting role of a personal community provides, in times of uncertainty, a framework to maintain self-identity and independence. Originality/value – This paper provides a better understanding of the role of a personal community in the consumption experiences of those consumers marginalized and vulnerable as a consequence of context. Home-confined consumers are “invisible” in the marketplace and the personal community is a means of redressing this imbalance by empowering such individuals.

Developing students’ ability to engage critically with science in the news: identifying elements of the ‘media awareness’ dimension

Worldwide, science education reform movements are stressing the need to promote ‘scienti?c literacy’ among young people. Increasingly, this is taken to include empowering students to engage critically with science-related news reporting. Despite this requirement now featuring in statutory curricula throughout the UK, there has, to date, been a dearth of research-informed advice to assist science teachers as they identify appropriate instructional objectives in this regard and design relevant learning activities through which these might be achieved. In this study, prominent science communication
scholars, science journalists, science educators and media educators were interviewed to determine what knowledge, skills and habits of mind they judged valuable for individuals reading science-related news stories. Teachers of science and of English from nine secondary schools in Northern Ireland addressed the same issue. A striking – and signi?cant – ?nding of the study was the very substantial number of statements of knowledge, skill and disposition o?ered by participants that relate to ‘media awareness’, an issue largely overlooked in the science education literature. The school-focused phase of the research suggests that cross-curricular approaches involving teachers of science collaborating with those of English/media education or media studies may best serve to address this important curricular goal.

The good our field can hope to do, the harm it should avoid

This paper tries to achieve a balanced view of the ethical issues raised by emotion-oriented technology as it is, rather than as it might be imagined. A high proportion of applications seem ethically neutral. Uses in entertainment and allied areas do no great harm or good. Empowering professions may do either, but regulatory systems already exist. Ethically positive aspirations involve mitigating problems that already exist by supporting humans in emotion-related judgments, by replacing technology that treats people in dehumanized and/or demeaning ways, and by improving access for groups who struggle with existing interfaces. Emotion-oriented computing may also contribute to revaluing human faculties other than pure intellect. Many potential negatives apply to technology as a whole. Concerns specifically related to emotion involve creating a lie, by simulate emotions that the systems do not have, or promoting mechanistic conceptions of emotion. Intermediate issues arise where more general problems could be exacerbated-helping systems to sway human choices or encouraging humans to choose virtual worlds rather than reality. "SIIF" systems (semi-intelligent information filters) are particularly problematic. These use simplified rules to make judgments about people that are complex, and have potentially serious consequences. The picture is one of balances to recognize and negotiate, not uniform good or evil. © 2010-2012 IEEE.

Utilising Creative Methodologies to Elicit the Views of Young Learners with Additional Needs in Literacy

The research described in this article aimed to explore and examine the dominant ‘assessment’ and ‘participation’ stories of upper-primary pupils with long-standing and marked literacy learning needs, their views on how their level of participation in the assessment and remediation of their additional needs might be increased and also how they perceive themselves as literacy learners. This qualitative small-scale study adopted a case study approach and utilised creative methodologies in the context of focus groups to investigate sensitively theviews and experiences of Key Stage 2 pupils with additional needs in literacy. The findings discussed here are based on the outcomes from the four Northern Irish schools that participated in the original cross-border (Northern Ireland/Republic of Ireland) study. Findings are discussed in the context of strategies for promotingholistic and empowering pathways for learners with additional needs in literacy.

Recruitment and capacity-building challenges in participatory research involving young people in Northern Ireland

Consulting young people in social research is increasingly popular and is not confined to their recruitment as participants but extends to the design, delivery and dissemination of research. In this chapter we explore the recruitment and capacity building challenges involved in working with young people as researchers. We will introduce some of the theoretical issues around young people’s participation. Drawing on experiences from four separate participatory research projects with young people in Northern Ireland, we will highlight some of the difficulties encountered and give some practical approaches to managing the research process. Strategies for recruiting and training young researchers will be considered and we also reflect on what the benefits of young people’s involvement can be; not only enhancing the research process but also empowering young people and creating the potential for social agency.

Service user involvement in drug treatment programs: Barriers to implementation and potential benefits for client recovery

Service user forums have the potential for improving awareness of services, empowering service users and strengthening community partnerships within an inclusive treatment and rehabilitation framework. The research aimed to investigate perspectives about service user involvement in order to inform the development of effective service user forum(s) in west Ireland. A total of 30 interviews with key service providers and 12 interviews with service users were conducted, with interview questions focusing on: (1) awareness of the Service User Support Team and (2) barriers to service user involvement and the development of service user forums in the region. An integrated data collection and thematic analysis was undertaken. Current levels of service user involvement were low, restricted by one-way communication and appeared grounded in user-provider power differentials and stigma relating to drug dependency. Service providers queried the actual terms of reference, capacity and training that would be needed for service user forums to advocate and lobby for service users. The use of existing support groups, creation of internet user forums and rotation of rural meetings were recommended to promote engagement among service users. The research underscores the need for transparency, resources and a framework for good practice that reflects a participatory approach


Read More: http://informahealthcare.com/doi/abs/10.3109/09687637.2012.671860

Is everyone Irish on St Patrick's Day? Divergent expectations and experiences of collective self-objectification at a multicultural parade

We examine experiences of collective self-objectification (CSO) (or its failure) among participants in a ‘multicultural’ St Patrick's Day parade. A two-stage interview study was carried out in which 10 parade participants (five each from ethnic majority and minority groups) were interviewed before and after the event. In pre-event interviews, all participants understood the parade as an opportunity to enact social identities, but differed in the category definitions and relations they saw as relevant. Members of the white Irish majority saw the event as being primarily about representing Ireland in a positive, progressive, light, whereas members of minority groups saw it as an opportunity to have their groups' identities and belonging in Ireland recognized by others. Post-event interviews revealed that, for the former group, the event succeeded in giving expression to their relevant category definitions. The latter group, on the other hand, cited features of the event such as inauthentic costume design and a segregated structure as reasons for why the event did not provide the group recognition they sought. The accounts revealed a variety of empowering and disempowering experiences corresponding to the extent of enactment. We consider the implications in terms of CSO, the performative nature of dual identities, as well as the notion of multicultural recognition.

Conceptualising elder abuse across local and global contexts: Implications for Policy and Professional Practice on the island of Ireland.

Social policy and professional practice across the island of Ireland is dominated by the WHO (2002) definition of elder abuse and national and professional interpretations of what constitutes elder abuse. Top down, generalist knowledge of the abuse of older people have facilitated paternalistic and protectionist policies and services designed to protect older vulnerable adults across the Republic of Ireland (ROI) and Northern Ireland (NI). However a qualitative study involving 58 older people in six focus groups held across Ireland highlights an alternative understanding of elder abuse grounded in the subjective experiences of older people across urban and rural communities on the island. Indigenous ways of knowing offer a broader and more inclusive understanding of the experience of elder abuse (Lafferty 2012; Dow and Joosten 2012) together with opportunities for the prevention of ageism and the empowering of older people across the jurisdictions.

Big Society as Big Government: Cameron's Governmentality Agenda

Cameron’s flagship policy of the ‘Big Society’ rests on a society/government dichotomy, diagnosing a ‘broken society’ caused by ‘big government’ having assumed the role communities once played. The remedy is greater social responsibility and the ‘Big Society’. This article argues that the dichotomy is
deceptive. We aim to show that the Big Society is big government, as it employs techniques for managing the conduct of individuals and communities such that the mentality of government, far from being removed or reduced, is bettered and made more efficient. To illustrate this, we explore two major initiatives: the National Citizen Service and the Community Resilience programme. These
projects demonstrate how practices of informing and guiding the conduct of individuals both produce agents and normalise certain values, resulting in the population being better known and controlled. Thus, far from lessening government and empowering people, the Big Society extends governmentality
throughout the social body.

Reimagining rights-based accountability: Community use of economic and social rights

This article explores the ways in which marginalised groups in Northern Ireland have employed and translated for practical use human rights standards, principles and mechanisms to campaign for the implementation of economic and social rights obligations. With the support of Participation and Practice of Rights, a regional nongovernmental organisation, marginalised groups have drawn upon human rights in their local context to campaign on issues related to mental health, housing, work and play. Based on case studies from four such campaigns, this article reviews the practical steps groups took to engage directly or indirectly with economic and social rights tools and mechanisms. The article reflects on the usefulness of these frameworks and mechanisms for achieving change in the case studies discussed, as well as the value of a human rights framework for empowering marginalised communities to make rights-based demands for change. It is argued that although the realisation of economic and social rights is limited in part by the lack of traditional enforcement mechanisms, community driven campaigns offer an opportunity for reimagining mechanisms for rights-based accountability.

Developing a best practice model for partnership practice between specialist palliative care and intellectual disability services: a mixed methods study

Background: The lack of access to good quality palliative care for people with intellectual disabilities is highlighted in the international literature. In response, more partnership practice in end-of-life care is proposed. 
Aim: This study aimed to develop a best practice model to guide and promote partnership practice between specialist palliative care and intellectual disability services. 
Design: A mixed methods research design involving two phases was used, underpinned by a conceptual model for partnership practice. 
Setting/participants: Phase 1 involved scoping end-of-life care to people with intellectual disability, based on self-completed questionnaires. In all, 47 of 66 (71.2%) services responded. In Phase 2, semi-structured interviews were undertaken with a purposive sample recruited of 30 health and social care professionals working in intellectual disability and palliative care services, who had provided palliative care to someone with intellectual disability. For both phases, data were collected from primary and secondary care in one region of the United Kingdom. 
Results: In Phase 1, examples of good practice were apparent. However, partnership practice was infrequent and unmet educational needs were identified. Four themes emerged from the interviews in Phase 2: challenges and issues in end-of-life care, sharing and learning, supporting and empowering and partnership in practice. 
Conclusion: Joint working and learning between intellectual disability and specialist palliative care were seen as key and fundamental. A framework for partnership practice between both services has been developed which could have international applicability and should be explored with other services in end-of-life care.

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.