Qualitative modelling of unknown interface behaviour

M. H. Lee, and S. M. Garrett, Qualitative modelling of unknown interface behaviour, International Journal of Human Computer Studies, Vol. 53, No. 4, pp. 493-515, 2000

A longitudinal study of epigenetic variation in twins.

DNA methylation is a key epigenetic mechanism involved in the developmental regulation of gene expression. Alterations in DNA methylation are established contributors to inter-individual phenotypic variation and have been associated with disease susceptibility. The degree to which changes in loci-specific DNA methylation are under the influence of heritable and environmental factors is largely unknown. In this study, we quantitatively measured DNA methylation across the promoter regions of the dopamine receptor 4 gene (DRD4), the serotonin transporter gene (SLC6A4/SERT) and the X-linked monoamine oxidase A gene (MAOA) using DNA sampled at both ages 5 and 10 years in 46 MZ twin-pairs and 45 DZ twin-pairs (total n=182). Our data suggest that DNA methylation differences are apparent already in early childhood, even between genetically identical individuals, and that individual differences in methylation are not stable over time. Our longitudinal-developmental study suggests that environmental influences are important factors accounting for interindividual DNA methylation differences, and that these influences differ across the genome. The observation of dynamic changes in DNA methylation over time highlights the importance of longitudinal research designs for epigenetic research.

La recuperación mutua en personas con trastornos psicológicos o diversidad funcional a través de la práctica creativa

En el presente artículo introducimos el concepto de “recuperación mutua” y proponemos las prácticas creativas como herramientas eficientesde recuperación de personas tanto con problemas de salud mental como con algún tipo de diversidad funcional. Frente al concepto clásico de “arte-terapia” nosotros proponemos el concepto de “práctica creativa” como más compatible con el modelo de “recuperación mutua”. Para ello, en primer lugar realizamos un breve repaso crítico a la relación del arte con la locura. Seguidamente, presentamos los conceptos hermanos de “recuperación” y “recuperación mutua” en el marco de lo que se ha venido a denominar las “health humanities”. Para finalizar, describimos dos prácticas creativas que en la actualidad están siendo evaluadas en España en el contexto de un proyecto de investigacióninternacional en recuperación mutua: Los seminarios creativos con personas con trastorno mental grave en el Museo de Arte Contemporáneo de Sevilla y el grupo de teatro con personas con diversidad funcional de la Asociación Síndrome de Down-Sevilla

Archiving Qualitative Data in the Context of a Society Coming out of Conflict: Some Lessons from Northern Ireland.

ARK (‘Access Research Knowledge’) was set up with a single goal: to make social science information on Northern Ireland available to the widest possible audience. The most well-known and widely used part of the ARK resource is CAIN (Conflict Archive on the INternet), which is one of the largest on-line collections of source material and information and about the Northern Ireland conflict. The compilation of CAIN's new Remembering: Victims, Survivors and Commemoration section raised issues related to the sensitivity of the material, as it feeds into the fundamental debate on the legacy of the Northern Ireland conflict. It also fundamentally raises the question to what extent archiving is a neutral or political activity and necessitates a discourse on responsibility and ethics among social researchers. Experiences from the establishment of the Northern Ireland Qualitative Archive (NIQA) shed light on future possibilities with regard to qualitative archives on the Northern Ireland conflict.

The Self-conscious Researcher – Post-modern Perspectives of Participatory Research with Young People

Research in young people by young people is a growing trend and considered a democratic approach to exploring their lives. Qualitative research is also seen as a way of redistributing power; with participatory research positioned by many as a democratic paradigm of qualitative inquiry. Although participatory research may grant a view on another world, it is fraught with a range of relationships that require negotiation and which necessitate constant self-reflection. Drawing on experiential accounts of participatory research with young people, this paper will explore the power relationship from the perspective of the adult researcher, the young peer researcher and also that of the researched. It will explore the self-conscious exchange of power; and describe how it is relinquished and reclaimed with increasing degrees of compliance as confidence and security develops. Co-authored by a peer researcher and adult researchers, this paper will illustrate a range of practical examples of participatory research with young people, decode the power struggle and consider the implications. It will argue that although the initial stages of the research process are artificial, self-conscious and undemocratic it concludes that the end may justify the means with the creation of social agency knowledge, experience and reality.

Factors influencing patients with stage 5 chronic kidney disease to opt for conservative management: a practitioner research study

Aims and objectives. This study explored decision-making experiences of patients with stage 5 chronic kidney disease when opting for conservative management of their renal failure.

Background. Dialysis is an invasive treatment, and for some older patients, there is an associated treatment burden of dialysis-related symptoms. An alternative choice is conservative management, but little is known about those who make this decision and how they are supported through the process.

Design. Qualitative practitioner research study.

Method. Data were generated from nine patients' naturally occurring clinic consultations with a renal clinical nurse specialist between May 2010 - July 2010. Interviews were transcribed verbatim and findings fed back at three multi-disciplinary meetings to check for relevance and resonance. Common themes were identified and codes applied.

Results. Patients reported age and having to travel three times a week to hospital for dialysis as reasons not to opt for treatment. Others felt well without dialysis not wanting to upset the 'status quo' or to burden loved ones. Most felt equipped to make the decision following explanation and discussion with the clinical nurse specialist in the renal clinic.

Conclusions. Patients opting for conservative management give numerous reasons for this including old age, travel limitations, feeling well without dialysis and not wanting to be a burden, but appear content with their decision. One-to-one discussions with the clinical nurse specialist appear helpful during the decision-making process presenting an opportunity for advancing nursing roles in the chronic kidney disease service.

Relevance to clinical practice. Understanding patients' reasons for refusing dialysis assists in supporting until death. There is an opportunity for developing nursing practice to meet the multi-faceted needs of this group.

The Self-Conscious Researcher - Post-modern Perspectives of Participatory Research with Young People

Research in young people by young people is a growing trend and considered a democratic approach to exploring their lives. Qualitative research is also seen as a way of redistributing power; with participatory research positioned by many as a democratic paradigm of qualitative inquiry. Although participatory research may grant a view on another world, it is fraught with a range of relationships that require negotiation and which necessitate constant self-reflection. Drawing on experiential accounts of participatory research with young people, this paper will explore the power relationship from the perspective of the adult researcher, the young peer researcher and also that of the researched. It will explore the self-conscious exchange of power; and describe how it is relinquished and reclaimed with increasing degrees of compliance as confidence and security develops. Co-authored by a peer researcher and adult researchers, this paper will illustrate a range of practical examples of participatory research with young people, decode the power struggle and consider the implications. It will argue that although the initial stages of the research process are artificial, self-conscious and undemocratic it concludes that the end may justify the means with the creation of social agency knowledge, experience and reality.

The influence of culture on home-based family caregiving at end-of-life: A case study of Dutch reformed family care givers in Ontario, Canada

Families are facing increased pressure to provide care to their terminally-ill or dying kin in the home. It is known that balancing care with other personal and social roles can adversely affect family caregivers' (FCGs) health, yet access to supportive services which can mitigate burden is often inadequate. Cultural factors are known to shape the experience of caregiving; however, most research to date tends to neglect the experiences of FCGs from different cultural groups. This understanding is necessary to ensure that supportive services are both meaningful and culturally-appropriate. Using qualitative methods, we undertook longitudinal research with a sample of Dutch Reformed FCGs (n = 5) to understand their experiences of caregiving and bereavement. The results of the study are suggestive of a cultural specificity with respect to caregiving that impacts both responsibilities and reactions to care. Three themes were salient to this group as a cultural entity: cultural attitudes towards care, religious beliefs and coping, and c. ulturally-informed care-seeking behaviours. These three themes were seen to be a function of their religious and ethnic identities and were reinforced by ties to the communities in which they resided. Cultural identity provided a framework through which to understand and make sense of the experience, while group membership provided access to networks of informal support. This research contributes to the geographical literature on care/caregiving by providing insight into the social, cultural and religious context of informal family caregiving with a population who live in close geographic proximity. On a practical level, this case study indicates the importance of considering how these factors may operate in other settings in order to implement timely and appropriate interventions to better support FCGs who are caring for their terminally-ill loved-ones at home.

The experience of research participation for family caregivers of palliative care cancer patients

There have been concerns raised regarding the ethical merit of involving dying patients and family caregivers as research participants. This study sought feedback from 103 primary family caregivers who had participated in a longitudinal research project. Caregivers were sent a questionnaire regarding the benefits and negative aspects associated with participating in research while also supporting or having supported a relative dying of cancer. The study identified that almost three quarters (71.1%) of the 45 respondents reported benefits of being involved in research and the majority (88.9%) cited no negative aspects associated with research participation. Findings of the study suggest that it is pertinent to invite family caregivers to be involved in palliative care research. Moreover, this study demonstrated that not only is it probably safe for family caregivers to be involved in research but also that many participants actually derive benefits.

Longitudinal relations between sectarian and nonsectarian community violence and child adjustment in Northern Ireland

Although relations between political violence and child adjustment are well documented, longitudinal research is needed to adequately address the many questions remaining about the contexts and developmental trajectories underlying the effects on children in areas of political violence. The study examined the relations between sectarian and nonsectarian community violence and adolescent adjustment problems over 4 consecutive years. Participants included 999 mother-child dyads (482 boys, 517 girls), M ages = 12.18 (SD = 1.82), 13.24 (SD = 1.83), 13.61 (SD = 1.99), and 14.66 (SD = 1.96) years, respectively, living in socially deprived neighborhoods in Belfast, Northern Ireland, a context of historical and ongoing political violence. In examining trajectories of adjustment problems, including youth experience with both sectarian and nonsectarian antisocial behaviors, sectarian antisocial behavior significantly predicted more adjustment problems across the 4 years of the study. Experiencing sectarian antisocial behavior was related to increased adolescent adjustment problems, and this relationship was accentuated in neighborhoods characterized by higher crime rates. The discussion considers the implications for further validating the distinction between sectarian and nonsectarian violence, including consideration of neighborhood crime levels, from the child's perspective in a setting of political violence. Copyright © Cambridge University Press 2013.

Borders, Asylum and Global Non-Citizenship: The Other Side of the Fence

The experience of border crossing for refugees and irregular migrants challenges global border and migration controls in multiple contexts. Using qualitative field research in Tanzania, Spain, Morocco and Australia, Heather Johnson asks how a global regime of migration management and control can be perceived through the dynamics of particular border spaces: refugee camps, border zones and detention centres. She explores how irregular migrants are impacted by the increasingly security-oriented practices of border control, and how they confront these practices. Johnson rejects the characterization of border spaces as exceptional, abject and exclusionary, arguing instead for an understanding of politics as everyday contestation that reveals a radical political agency, re-imagining the global non-citizen as a transgressive and powerful figure. Building on recent scholarship that rethinks irregularity and non-citizenship, her conclusions have broad implications for how we understand irregular migration from a position of dialogue and solidarity.

Lessons from 'The Wire': Epistemological Reflections on the Practice of Sociological Research

Recent debates and controversies have highlighted several issues surrounding sociological research, which relate to the general conditions under which it is undertaken and how this is changing. There is a pressing need to respond to these issues as a whole, in particular by examining what they tell us about research practices. This article argues that a consideration of themes raised by the American television drama The Wire is useful for facilitating such a response, since it may be read as a discussion of working conditions within neoliberal societies. The following themes are pertinent here: the need to reflect upon the terms by which research is framed by funders, to take adequate time to conduct and complete research, and to encourage critical debate within research. Whilst these relate to influential epistemological discussions by Pierre Bourdieu and Michael Burawoy, this reading of The Wire is particularly helpful for highlighting the practical and inter-relational situations in which sociological research is carried out but which tend not to receive the systematic attention they deserve.

How Mothers Talk About Placement of Their Child With Autism Outside the Home

In this article I use insights offered by the poststructural shift and linguistic turn in social scientific inquiry, specifically discourse analysis, to explore mothers’ talk about the placement of their child with autism outside of the home. By viewing mothers’ talk as data, I bring to light the discourses and interpretive practices that mothers drew on to organize their talk of placement. In doing so, I provide insights into how mothers gave meaning to processes of placement while also expanding on commonsensical discursive notions of “good” mothering, caregiving, and family. Implications of the findings are discussed.