Identity in research infrastructure and scientific communication: Report from the 1st IRISC workshop, Helsinki Sep 12-13, 2011

Motivation for the IRISC workshop came from the observation that identity and digital identification are increasingly important factors in modern scientific research, especially with the now near-ubiquitous use of the Internet as a global medium for dissemination and debate of scientific knowledge and data, and as a platform for scientific collaborations and large-scale e-science activities.

The 1 1/2 day IRISC2011 workshop sought to explore a series of interrelated topics under two main themes: i) unambiguously identifying authors/creators & attributing their scholarly works, and ii) individual identification and access management in the context of identity federations. Specific aims of the workshop included:

• Raising overall awareness of key technical and non-technical challenges, opportunities and developments.
• Facilitating a dialogue, cross-pollination of ideas, collaboration and coordination between diverse – and largely unconnected – communities.
• Identifying & discussing existing/emerging technologies, best practices and requirements for researcher identification.

This report provides background information on key identification-related concepts & projects, describes workshop proceedings and summarizes key workshop findings

“It still haunts me whether we did the right thing”: a qualitative analysis of free text survey data on the bereavement experiences and support needs of family caregivers

Background Research suggests that there may be bereavement experiences and support needs which are specific to family caregivers providing end of life care (EoLC), although this remains an under-researched area. This paper focuses on themes relating to bereavement which were derived from an analysis of free text survey responses collected in a research priority setting exercise for palliative and EoLC. Methods The priority setting exercise involved a public survey, designed to generate research priorities. Rather than identify research topics, many people instead described their experiences and raised more general questions relating to palliative and end of life care. To explore these experiences and perspectives a supplementary thematic analysis was conducted on the survey responses. 1403 respondents took part, including patients, current and bereaved carers, health and social care professionals, volunteers and members of the public. Results Several grief issues were identified, which seem specific to the experiences of family caregivers. Responses demonstrated a relationship between death experiences, feelings of guilt and bereavement outcomes for some family caregivers, as well as caregiver experiences of a “void” created by the withdrawal of professional support after death. Communication and support needs were also identified by participants. Conclusion This analysis provides further evidence of some of the specific effects that caring for a loved one at the end of life can have on bereavement experiences. Finding ways of improving communication around the time of death and effective follow up approaches post death could help to address some of these issues

Acute Inpatients’ Experiences of Stigma From Psychosis: A Qualitative Exploration.

Stigma is a common difficulty for those who experience psychosis as they are viewed as most dangerous, unpredictable, and least likely to recover. In particular, experiences of stigma are yet to be explored with inpatients admitted to psychiatric hospital. The aim of this study was to examine subjective experiences of stigma with acute psychiatric inpatients who experience psychosis. Twenty-five psychiatric inpatients with experiences of psychosis were interviewed using a semistructured interview measure to examine their subjective experiences of stigma. The interview schedule enquired about their experiences of stigma and discrimination and the personal impacts this has had. Thematic analysis was employed to analyze the qualitative data. The analysis identified 3 superordinate themes: ‘stigmatizing social environment and networks,’ ‘stigmatized person with psychosis,’ and ‘stigma interactions.’ These themes reflected experiences of stigma during the inpatient stay as well as in the community. A graphical representation of these themes and their interaction was developed. Stigma is a concern for acute psychiatric inpatients with psychosis. This concern should be explored in future research, and where appropriate addressed during admission to an acute psychiatric inpatient hospital

Different patterns of Australian adults\u27 knowledge of foods and nutrients related to metabolic disease risk

A nationwide survey of 2022 consumers was conducted in Australia in late 2011. A short list of questions about knowledge of the nutrient composition of common foods was administered along with questions about the respondents’ food attitudes, demographics, school education and dieting practices. Overall, the results showed that nutrition knowledge was relatively high. Latent class analysis showed two groups of consumers with ‘high’ and ‘low’ knowledge of nutrition. Higher knowledge was positively associated with age, female sex, university education, experience of home economics or health education at school, having a chronic disease, and attitudes to food issues, and negatively with type 1 diabetes or the use of diabetes-control diets. The implications of the findings for nutrition communication are discussed

An Integrative Cognitive Model of Internalized Stigma in Psychosis

Background: Internalized stigma is a significant difficulty for those who experience psychosis, but it has never been conceptualized using cognitive theory. Aims: The aim of this paper is to outline a cognitive model conceptualizing internalized stigma experienced by people who also experience psychosis. Method: Previous literature is reviewed, critiqued and synthesized to develop the model. It draws upon previous social cognitive models of internalized stigma and integrates cognitive behavioural theory and social mentality theory. Results: This paper identifies key cognitive, behavioural and emotional processes that contribute to the development and maintenance of internalized stigma, whilst also recognizing the central importance of cultural context in creating negative stereotypes of psychosis. Moreover, therapeutic strategies to alleviate internalized stigma are identified. A case example is explored and a formulation and brief intervention plan was developed in order to illustrate the model in practice. Conclusion: An integrative cognitive model is presented, which can be used to develop individualized case formulations, which can guide cognitive behavioural interventions targeting internalized stigma in those who experience psychosis. More research is required to examine the efficacy of such interventions. In addition, it is imperative to continue to research interventions that create change in stigma at a societal level

Semi-structured Interview Measure of Stigma (SIMS) in psychosis: Assessment of psychometric properties

Stigma is a significant difficulty for people who experience psychosis. To date, there have been no outcome measures developed to examine stigma exclusively in people with psychosis. The aim of this study was develop and validate a semi-structured interview measure of stigma (SIMS) in psychosis. The SIMS is an eleven item measure of stigma developed in consultation with service users who have experienced psychosis. 79 participants with experience of psychosis were recruited for the purposes of this study. They were administered the SIMS alongside a battery of other relevant outcome measures to examine reliability and validity. A one-factor solution was identified for the SIMS which encompassed all ten rateable items. The measure met all reliability and validity criteria and illustrated good internal consistency, inter-rater reliability, test retest reliability, criterion validity, construct validity, sensitivity to change and had no floor or ceiling effects. The SIMS is a reliable and valid measure of stigma in psychosis. It may be more engaging and acceptable than other stigma measures due to its semi-structured interview format

Symptom management, nutrition and hydration at end-of-life: a qualitative exploration of patients', carers' and health professionals' experiences and further research questions

Background Symptom management is an essential aspect of palliative and end-of-life care, but evidence suggests that patients’ symptoms may not always be relieved, causing significant harm to patients and magnifying their relatives’ distress. A growing body of evidence focuses on symptom management at the end-of-life, but research funding for palliative care remains disproportionately low. It is therefore crucial that research funding is targeted at areas of importance to patients and relatives. The Palliative and end-of-life care Priority Setting Partnership (PeolcPSP) undertook a UK-wide free-text survey to establish research priorities within palliative and end-of-life care and disseminated its results in 2015. Much of the data were related more broadly to personal perceptions and experiences rather than specific research questions. The aim of this article is to report on a supplementary analysis exploring the experiences and questions of PeolcPSP survey respondents regarding symptoms, hydration and nutrition. Methods The PeolcPSP data (n=1403) were coded by a team of qualitative researchers in a supplementary analysis. There were 190 responses that related to symptoms, nutrition and hydration. The data were analysed thematically using Braun and Clarke’s approach. Results Five themes were identified: pain, breathlessness, agitation, nutrition and hydration. The majority of responses related to symptoms that were sub-optimally managed, in particular pain. Nutrition and hydration were of significant concern, particularly for carers. Overall, respondents consistently asked about the most effective, evidence-based methods for managing symptoms and suggested areas where further research is necessary. Conclusions This study highlights the perceptions and experiences of patients, families and professionals within palliative care, highlighting the need for improved care, communication and further research to establish which treatments are most effective within a palliative care population. This is essential to reduce harm and distress for patients and families

Psychosocial interventions for internalised stigma in people with a schizophrenia-spectrum diagnosis: A systematic narrative synthesis and meta-analysis

It is acknowledged that people with a schizophrenia-spectrum diagnosis experience higher levels of stigma compared to any other mental health diagnosis. As a consequence, their experience of internalised stigma is likely to be the most detrimental and pervasive. Internalised stigma interventions have shown some benefits in those who experience serious mental illness including those with a schizophrenia-spectrum diagnosis. A systematic narrative review and meta-analysis were conducted examining the efficacy of internalised stigma interventions for people with a schizophrenia-spectrum diagnosis. Randomised Controlled Trials, controlled trials, and cohort studies were included and assessed against quality criteria. The search identified 12 studies; 7 randomised controlled trials, 3 cohort studies and 2 controlled trials. A variety of psychosocial interventions were utilised with the majority employing Cognitive Behaviour Therapy (CBT), psychoeducation and social skills training. The core outcomes used to examine the efficacy of the intervention were internalised stigma, self-esteem, empowerment, and functioning. The meta-analysis revealed an improvement in internalised stigma favouring the internalised stigma intervention but was not significant (5 RCTs, n = 200). Self-efficacy and insight were significantly improved favouring the internalised stigma intervention. Internalised stigma interventions show promise in those with schizophrenia-spectrum diagnoses. Existing interventions have demonstrated small effects and employed small samples. Large scale RCTs are required to further develop the evidence base of more targeted interventions

Caractérisation expérimentale d’une unité de distillation membranaire AGMD pour un couplage avec une thermofrigopompe

National audienceLa croissance démographique mondiale entraine une augmentation des besoins en froid commercial et domestique, en rafraîchissement ou climatisation ainsi qu’en eau potable. Dans l'objectif d’un développement social et industriel durable, il apparaît indispensable pour certaines populations, en particulier dans les sites isolés, que de nouveaux systèmes économes en énergie pour la production d'eau potable soient développés. L’objectif général est de coupler une thermofrigopompe (TFP) à une unité de distillation membranaire pour la production de froid et le dessalement de l’eau de mer (figure 1). La technique utilisée pour le dessalement est l’AGMD, air gap membrane distillation. C’est un procédé thermique et membranaire (figure 2) basé sur la création d’un gradient de pression de vapeur généré par un gradient de température de part et d’autre d’une membrane microporeuse hydrophobe. Une étude de caractérisation expérimentale de l’AGMD est effectuée sur une installation pilote. Plusieurs paramètres influents tels que les températures, les débits, l’épaisseur de l’air gap et le type d’écoulement sont été étudiés. Lors des essais nous avons utilisé de l’eau de mer synthétique (35g/l). Les résultats montrent que le flux de perméat augmente lorsque la température et le débit d’alimentation augmentent et lorsque l’épaisseur de l’air gap diminue. Le taux de rejet de sel est de 99,9%. Le type d’écoulement (co-courant ou contre-courant) à une faible influence sur le flux de perméat. Cette étude expérimentale confirme que le couplage d’une thermofrigopompe avec une unité de distillation membranaire est réalisable grâce aux faibles températures de fonctionnement (25 à 65°C) qui correspondent à la gamme de température en production de chaleur de la TFP. Une modélisation du comportement du pilote a été effectuée et validée. Ce modèle permet de caractériser les phénomènes mécaniques et thermiques dans l’installation. Il sera utilisé pour dimensionner un prototype de TFP couplé à l’AGMD puis pour simuler une installation de climatisation et de production d’eau douce pour des bâtiments à taille réelle