Self-management education for cystic fibrosis

Background: Self-management education may help patients with cystic fibrosis and their families to choose, monitor and adjust treatment requirements for their illness, and also to manage the effects of illness on their lives. Although self-management education interventions have been developed for cystic fibrosis, no previous systematic review of the evidence of effectiveness of these interventions has been conducted. Objectives: To assess the effects of self-management education interventions on improving health outcomes for patients with cystic fibrosis and their caregivers. Search methods: We searched the Cochrane Cystic Fibrosis and Genetic Disorders Group Trials Register (date of the last search: 22 August 2013). We also searched databases through EBSCO (CINAHL; Psychological and Behavioural Sciences Collection; PsychInfo; SocINDEX) and Elsevier (Embase) and handsearched relevant journals and conference proceedings (date of the last searches: 01 February 2014 ). Selection criteria: Randomised controlled trials, quasi-randomised controlled trials or controlled clinical trials comparing different types of self-management education for cystic fibrosis or comparing self-management education with standard care or no intervention. Data collection and analysis: Two authors assessed trial eligibility and risk of bias. Three authors extracted data. Main results: Four trials (involving a total of 269 participants) were included. The participants were children with cystic fibrosis and their parents or caregivers in three trials and adults with cystic fibrosis in one trial. The trials compared four different self-management education interventions versus standard treatment: (1) a training programme for managing cystic fibrosis in general; (2) education specific to aerosol and airway clearance treatments; (3) disease-specific nutrition education; and (4) general and disease-specific nutrition education. Training children to manage cystic fibrosis in general had no statistically significant effects on weight after six to eight weeks, mean difference -7.74 lb (i.e. 3.51 kg) (95% confidence interval -35.18 to 19.70). General and disease-specific nutrition education for adults had no statistically significant effects on: pulmonary function (forced expiratory volume at one second), mean difference -5.00 % (95% confidence interval -18.10 to 8.10) at six months and mean difference -5.50 % (95% confidence interval -18.46 to 7.46) at 12 months; or weight, mean difference - 0.70 kg (95% confidence interval -6.58 to 5.18) at six months and mean difference -0.70 kg (95% confidence interval -6.62 to 5.22) at 12 months; or dietary fat intake scores, mean difference 1.60 (85% confidence interval -2.90 to 6.10) at six months and mean difference 0.20 (95% confidence interval -4.08 to 4.48) at 12 months. There is some limited evidence to suggest that self-management education may improve knowledge in patients with cystic fibrosis but not in parents or caregivers. There is also some limited evidence to suggest that self-management education may result in positively changing a small number of behaviours in both patients and caregivers. Authors' conclusions: The available evidence from this review is of insufficient quantity and quality to draw any firm conclusions about the effects of self-management education for cystic fibrosis. Further trials are needed to investigate the effects of self-management education on a range of clinical and behavioural outcomes in children, adolescents and adults with cystic fibrosis and their caregivers.

Helicobacter pylori modulation of gastric and duodenal mucosal T cell cytokine secretions in children compared with adults.

BACKGROUND: In contrast to adults, ulcers are un-common in Helicobacter pylori-infected children. Since immunological determinants influence the outcome of H. pylori infection, we have investigated mucosal T cell responses in H. pylori-infected children and compared them with those of adults and negative controls. MATERIAL AND METHODS: Mucosal biopsies were obtained from 43 patients undergoing an upper GI endoscopy for dyspeptic symptoms. The concentrations of released cytokines and the density of CD3+, CD25+ and CD69+cells were evaluated by flow cytometry, and the numbers of cytokine-secreting cells were measured by ELISPOT. RESULTS: The numbers of isolated antral CD3+ lymphocytes were only significantly raised in infected adults compared with noninfected controls (p < 0.05), whereas the proportion of CD3+ cells expressing activation markers (CD25 or CD69) remained low. In the stomach, IFN-gamma concentrations increased in infected children and infected adults compared with controls (p < 0.05), but IFN-gamma concentrations were tenfold lower in children than in adults (p < 0.01). IL-2, IL-4, IL-10 and TNF-alpha concentrations were similar in infected and in uninfected children and adults. In contrast, in the duodenum, IFN-gamma, as well as IL-4 and IL-10 concentrations were only increased in infected children compared with controls (p < 0.05). The concentrations of these cytokines were similar in both groups of adults who, however, like children, displayed a higher number of duodenal IL-4-secreting cells compared to controls (p < 0.05). CONCLUSION: These results suggest that IFN-gamma secretion in the stomach of H. pylori-infected patients is lower in children than in adults. This could protect children from development of severe gastro-duodenal diseases such as ulcer disease. In addition, infected patients are characterised by a dysregulation of the mucosal cytokine secretion at distance from the infection site.

The effects of financial education in the workplace: Evidence from a survey of employers

We examine the effects of education on financial decision-making skills by identifying an interesting source of variation in pertinent training. During the 1990s, an increasing number of individuals were exposed to programs of financial education provided by their employers. If, as some have argued, low saving frequently results from a failure to appreciate economic vulnerabilities, then education of this form could prove to have a powerful effect on behavior. The current article undertakes an analysis of these programs using a previously unexploited survey of employers. We find that both participation in and contributions to voluntary savings plans are significantly higher when employers offer retirement seminars. The effect is typically much stronger for nonhighly compensated employees than for highly compensated employees. The frequency of seminars emerges as a particularly important correlate of behavior. We are unable to detect any effects of written materials, such as newsletters and summary plan descriptions, regardless of frequency. We also present evidence on other determinants of plan activity. © 2008 Western Economic Association International.

Strategy in a religious network: A bourdieuian critique of the sociology of spirituality

Within the sociology of religion there has emerged a discourse on spirituality that views contemporary developments as involving the assertion of individuals’ self-authority. This perspective’s theoretical roots have been persistently criticised for their conceptualisation of agency; in contrast, this paper draws upon Bourdieu’s concept of strategy to examine action in an English religious network of the sort often classified ‘New Age’. In particular, one informant is discussed in order to provide focus for an understanding of what Lahire calls sociology at the level of the individual. Her actions, better explained as strategic improvisations than as choices made on the basis of self-authority, help to illuminate the peculiarities of this religious setting, which is characterised in terms of ‘nonformativeness’. By emphasising social contextualisation, this approach addresses people’s meaningful actions in a way that may be applied not only more widely within the religious field but also in other fields of action.

The use of ICT in the course “Photography” in university education. First results of a teaching innovation project at the University of Murcia

The new pedagogical framework arisen since the Bologna Declaration,the Prague Communiquéand the introduction of the European Higher Education Area (EHEA), encourages, significantly, the use of new Communication and Information Technology to evolve teaching methodologies. The different ways teachers relate to learners have undergone a staggering change from which educational initiatives have emerged. Many of them are based on contents’ democratization through the use of ICT. The current article is intended to show the results obtained until the 2012/2013 academic course, since the implementation of the teaching innovation project entitled “The use of ICT for the students’ autonomous learning in the university education of the course Photography. Elaboration of a virtual classroom and results’ analysis related to the acquisition of skills and competencies” that has been developed in the course called Draw with light: Photography, belonging to the Fine Arts Degree at the University of Murcia.

Creating replicas of scultural heritage through 3D reconstruction and low cost 3D printer in Education

The process of making replicas of heritage has traditionally been developed by public agencies, corporations and museums and is not commonly used in schools. Currently there are technologies that allow creating cheap replicas. The new 3D reconstruction software, based on photographs and low cost 3D printers allow to make replicas at a cost much lower than traditional. This article describes the process of creating replicas of the sculpture Goslar Warrior of artist Henry Moore, located in Santa Cruz de Tenerife. To make this process, first, a digital model have been created using Autodesk Recap 360, Autodesk 123D Catch and Autodesk Meshmixer MarkerBot MakerWare applications. Physical replication, has been reproduced in polylactic acid (PLA) by MakerBot Replicator 2 3D printer. In addition, a cost analysis using, in one hand, the printer mentioned, and in the other hand, 3D printing services both online and local, is included. Finally, there has been a specific action with 141 students and 12 high school teachers, who filled a questionnary about the use of sculptural replicas in education.

Vis-á-Vis-á-Vis. The Three-dimensional and artistic view of a problem

ANPO (A Non-predefined Outcome) is an an art-making methodology that employs structuralist theory of language (Saussure, Lacan, Foucault) combined with Hegel’s dialectic and the theory of creation of space by Lefebvre to generate spaces of dialogue and conversation between community members and different stakeholders. These theories of language are used to find artistic ways of representing a topic that community members have previously chosen. The topic is approached in a way that allows a visual, aural, performative and gustative form. To achieve this, the methodology is split in four main steps: step 1 ‘This is not a chair’, Step 2 ‘The topic’, Step 3 ‘ Vis-á-vis-á-vis’ and step 4. ‘Dialectical representation’ where the defined topic is used to generate artistic representations.The step 1 is a warm up exercise informed by the Rene Magritte painting ‘This is not a Pipe’. This exercise aims to help the participants to see an object as something else than an object but as a consequence of social implications. Step 2, participants choose a random topic and vote for it. The artist/facilitator does not predetermine the topic, participants are the one who propose it and choose it. Step 3, will be analysed in this publication and finally step 4, the broken down topic is taken to be represented and analysed in different ways. 

The Critical Reading of the Images Associated with Science-Related News Reports: Establishing a knowledge, skills, and attitudes framework

For the majority of adults, the media constitute their main source of information about science and science-related matters impacting on society. To help prepare young people to engage with science in the media, teachers are being exhorted to equip their students with the knowledge, skills, and attitudes to respond critically to science-related news reports. Typically, such reports comprise not only text, but also visual elements. These images are not simply adjuncts to the written word; they are integral to meaning-making. Though science teachers make considerable use of newspaper images, they tend to view these representations unproblematically, underestimating their potential ambiguity, complexity, and role in framing media messages. They rarely aim to develop students’ ability to ‘read’, critically, such graphics. Moreover, research into how this might be achieved is limited and, consequently, research-informed guidance which could support this instruction is lacking. This paper describes a study designed to formulate a framework for such teaching. Science communication scholars, science journalists and media educators with acknowledged relevant expertise were surveyed to ascertain what knowledge, skills, and attitudes they deemed useful to engagement with science related news images. Their proposals were recast as learning intentions (instructional objectives), and science and English teachers collaborated to suggest which could be addressed with secondary school students and the age group best suited to their introduction. The outcome is an inventory of learning intentions on which teachers could draw to support their planning of instructional sequences aimed at developing students’ criticality in respect of the totality of science news reports.

Acculturation and religion in schools: the views of young people from minority belief backgrounds

This paper aims to explore the relationship between religious identity, acculturation strategies and perceptions of acculturation orientation in the school context amongst young people from minority
belief backgrounds. Based on a qualitative study including interviews with 26 young people from religious minority belief backgrounds in Northern Ireland, it is argued that acculturation theory provides a useful lens for understanding how young people from religious minority belief backgrounds navigate majority religious school contexts. Using a qualitative approach to explore acculturation theory enables an in-depth understanding of the inter-relationship between minority belief youth’s acculturation strategies and their respective school contexts. Similar to previous research, integrationist attitudes generally prevailed amongst minority belief young people in this study. The findings highlight how young people negotiate their religious identities in a complex web of inter-relationships between their minority religious belief community and the mainstream school culture as represented through peer and staff attitudes, school ethos and practices and religious education. Young people demonstrated differentiated understandings of acculturation orientations within the school context, which they evaluated on the basis of complex perceptions of educational policy, interpersonal relationships and individuals’ motivations. Findings are discussed in view of acculturation tensions, which arose particularly in relation to the religious education curriculum and their implications for opt-out provision as stipulated by human rights law.

FROM ASCRIPTION TO ACHIEVEMENT - ORIGINS, EDUCATION AND ENTRY TO THE LABOR-FORCE IN THE REPUBLIC OF IRELAND DURING THE 20TH-CENTURY

This paper examines the relationship between class of origin, educational attainment, and class of entry to the labour force, in three cohorts of men in the Republic of Ireland using data collected in 1987. The three cohorts comprise men born (i) before 1937; (ii) between 1937 and 1949; and (iii) between 1950 and 1962. The paper assesses the degree of change over the three cohorts in respect of (a) the gross relationship between origins and entry class; (b) the partial effect (controlling for education) of origin class on entry class; (c) the partial effect of education (controlling for origins) on class of entry. In broad terms the liberal theory of industrialism would imply a movement, over the three cohorts, towards (a) increasing social fluidity; (b) a weakening of the partial effect of origin class; (c) a strengthening of the partial effect of education. These latter two trends should be particularly noticeable in the youngest cohort, which would, to some degree, have benefited from the introduction of free post-primary education in Ireland in 1967.

Our results provide almost no support for these hypotheses. We find that patterns of social fluidity in the origin/entry relationship remain unchanged over the cohorts. The partial effect of class remains relatively constant; and, while the partial effect of education on entry class changes over the cohorts, the most striking result in this area is the declining returns to higher levels of education. While the average level of educational attainment increased over the three cohorts, the advantages accruing to the possession of higher levels of education simultaneously diminished. Taken together our results suggest that, in Ireland, those classes that have historically enjoyed advantages in access to more desirable entry positions in the labour market have been remarkably adept at retaining their advantages during the course of industrialization and through the various educational and other labour market changes that have accompanied this process.

Parental Disputes, Religious Upbringing and Welfare in English Law and the ECHR

This article assesses the position of English law concerning parental disputes about the religious upbringing of children. Despite the strong emphasis on both parents being able to direct their child’s religious upbringing, courts have interpreted the child’s welfare to restrict the exposure of the child to parental religious beliefs or practices in some circumstances: preserving the child’s future choice of religion, the physical integrity of the child, the child’s contact and relationship with both parents, the child’s educational choices, and the child’s relationship with both parents’ religious community. It is suggested that courts should have a wide understanding of welfare and should be wary to prohibit parents teaching their minority beliefs. This article also compares the position of the European Court of Human Rights (ECtHR) and suggests that, despite the stronger emphasis by the ECtHR on parental rights, English law is generally not that much at odds with the ECtHR.

Helping the most vulnerable out of the poverty trap and reducing inequality: Policies, strategies, and services for individuals with Autism Spectrum Disorder, including intellectual and neurodevelopmental disabilities: Benchmarking Autism Services Efficacy: BASE Project (Volume 3) Secondary Data analysis

1) Executive Summary
Legislation (Autism Act NI, 2011), a cross-departmental strategy (Autism Strategy 2013-2020) and a first action plan (2013-2016) have been developed in Northern Ireland in order to support individuals and families affected by Autism Spectrum Disorder (ASD) without a prior thorough baseline assessment of need. At the same time, there are large existing data sets about the population in NI that had never been subjected to a secondary data analysis with regards to data on ASD. This report covers the first comprehensive secondary data analysis and thereby aims to inform future policy and practice.
Following a search of all existing, large-scale, regional or national data sets that were relevant to the lives of individuals and families affected by Autism Spectrum Disorder (ASD) in Northern Ireland, extensive secondary data analyses were carried out. The focus of these secondary data analyses was to distill any ASD related data from larger generic data sets. The findings are reported for each data set and follow a lifespan perspective, i.e., data related to children is reported first before data related to adults.
Key findings:
Autism Prevalence:
Of children born in 2000 in the UK,
• 0.9% (1:109) were reported to have ASD, when they were 5-year old in 2005;
• 1.8% (1:55) were reported to have ASD, when they were 7-years old in 2007;
• 3.5% (1:29) were reported to have ASD, when they were 11-year old in 2011.
In mainstream schools in Northern Ireland
• 1.2% of the children were reported to have ASD in 2006/07;
• 1.8% of the children were reported to have ASD in 2012/13.

Economic Deprivation:
• Families of children with autism (CWA) were 9%-18% worse off per week than families of children not on the autism spectrum (COA).
• Between 2006-2013 deprivation of CWA compared to COA nearly doubled as measured by eligibility for free school meals (from near 20 % to 37%)
• In 2006, CWA and COA experienced similar levels of deprivation (approx. 20%), by 2013, a considerable deprivation gap had developed, with CWA experienced 6% more deprivation than COA.
• Nearly 1/3 of primary school CWA lived in the most deprived areas in Northern Ireland.
• Nearly ½ of children with Asperger’s Syndrome who attended special school lived in the most deprived areas.

Unemployment:
• Mothers of CWA were 6% less likely to be employed than mothers of COA.
• Mothers of CWA earned 35%-56% less than mothers of COA.
• CWA were 9% less likely to live in two income families than COA.

Health:
• Pre-diagnosis, CWA were more likely than COA to have physical health problems, including walking on level ground, speech and language, hearing, eyesight, and asthma.
• Aged 3 years of age CWA experienced poorer emotional and social health than COA, this difference increased significantly by the time they were 7 years of age.
• Mothers of young CWA had lower levels of life satisfaction and poorer mental health than mothers of young COA.
Education:
• In mainstream education, children with ASD aged 11-16 years reported less satisfaction with their social relationships than COA.
• Younger children with ASD (aged 5 and 7 years) were less likely to enjoy school, were bullied more, and were more reluctant to attend school than COA.
• CWA attended school 2-3 weeks less than COA .
• Children with Asperger’s Syndrome in special schools missed the equivalent of 8-13 school days more than children with Asperger’s Syndrome in mainstream schools.
• Children with ASD attending mainstream schooling were less likely to gain 5+ GCSEs A*-C or subsequently attend university.



Further and Higher Education:
• Enrolment rates for students with ASD have risen in Further Education (FE), from 0% to 0.7%.
• Enrolment rates for students with ASD have risen in Higher Education (HE), from 0.28% to 0.45%.
• Students with ASD chose to study different subjects than students without ASD, although other factors, e.g., gender, age etc. may have played a part in subject selection.
• Students with ASD from NI were more likely than students without ASD to choose Northern Irish HE Institutions rather than study outside NI.

Participation in adult life and employment:
• A small number of adults with ASD (n=99) have benefitted from DES employment provision over the past 12 years.
• It is unknown how many adults with ASD have received employment support elsewhere (e.g. Steps to Work).
•
Awareness and Attitudes in the General Population:
• In both the 2003 and 2012 NI Life and Times Survey (NILTS), NI public reported positive attitudes towards the inclusion of children with ASD in mainstream education (see also BASE Project Vol. 2).

Gap Analysis Recommendations:
This was the first comprehensive secondary analysis with regards to ASD of existing large-scale data sets in Northern Ireland. Data gaps were identified and further replications would benefit from the following data inclusion:
• ASD should be recorded routinely in the following datasets:
o Census;
o Northern Ireland Survey of Activity Limitation (NISALD);
o Training for Success/Steps to work; Steps to Success;
o Travel survey;
o Hate crime; and
o Labour Force Survey.
• Data should be collected on the destinations/qualifications of special school leavers.
• NILT Survey autism module should be repeated in 5 years time (2017) (see full report of 1st NILT Survey autism module 2012 in BASE Project Report Volume 2).
• General public attitudes and awareness should be assessed for children and young people, using the Young Life and Times Survey (YLT) and the Kids Life and Times Survey (KLT); (this work is underway, Dillenburger, McKerr, Schubolz, & Lloyd, 2014-2015).
 

Ethnoreligious change in Northern Ireland and Zimbabwe:A comparative study of how religious havens can have ethnic significance

This study compares the internal dynamics of religious change in the 'post-evangelical' Ikon community in Belfast, Northern Ireland, and a charismatic, multiethnic congregation in Harare, Zimbabwe. Although the theological ideas behind Ikon and the congregation vary widely, the processes whereby both groups manage change are broadly similar and have wider theoretical significance. Accordingly, this article analyses how people use the religious resources of their traditions to construct 'havens' in which change is facilitated. Havens are conceived of as safe spaces where people use religious resources to challenge ethnic boundaries and power structures. They can be seen to function as mechanisms for disrupting long-entrenched feedback patterns of opposition and conflict. © 2010 The Editor of Ethnopolitics.

The use of eye-tracking to explore social difficulties in cognitively able students with autism spectrum disorder: A pilot study

Individuals with autism spectrum disorder do not just 'grow out of' their early difficulties in understanding the social world. Even for those who are cognitively able, autism-related difficulties continue into adulthood. Atypicalities attending to and interpreting communicative signals from others can provide barriers to success in education, employment and relationships. In the current study, we use eye-tracking during real social interaction to explore attention to social cues (e.g. face, eyes, mouth) and links to social awareness in a group of cognitively able University students with autism spectrum disorder and typically developing students from the same University. During the interaction, students with autism spectrum disorder showed less eye fixation and more mouth fixation than typically developing students. Importantly, while 63% of typically developing participants reported thinking they were deceived about the true nature of the interaction, only 9% of autism spectrum disorder participants picked up this subtle social signal. We argue that understanding how these social attentional and social awareness difficulties manifest during adulthood is important given the growing number of adults with autism spectrum disorder who are attending higher level education. These adults may be particularly susceptible to drop-out due to demands of coping in situations where social awareness is so important.

Quality of Life Predictors and Normative Data

This study identifies predictors and normative data for quality of life (QOL) in a sample of Portuguese adults from general population. A cross-sectional correlational study was undertaken with two hundred and fifty-five (N = 255) individuals from Portuguese general population (mean age 43 years, range 25–84 years; 148 females, 107 males). Participants completed the European Portuguese version of the World Health Organization Quality of Life short-form instrument and the European Portuguese version of the Center for Epidemiologic Studies Depression Scale. Demographic information was also collected. Portuguese adults reported their QOL as good. The physical, psychological and environmental domains predicted 44 % of the variance of QOL. The strongest predictor was the physical domain and the weakest was social relationships. Age, educational level, socioeconomic status and emotional status were significantly correlated with QOL and explained 25 % of the variance of QOL. The strongest predictor of QOL was emotional status followed by education and age. QOL was significantly different according to: marital status; living place (mainland or islands); type of cohabitants; occupation; health. The sample of adults from general Portuguese population reported high levels of QOL. The life domain that better explained QOL was the physical domain. Among other variables, emotional status best predicted QOL. Further variables influenced overall QOL. These findings inform our understanding on adults from Portuguese general population QOL and can be helpful for researchers and practitioners using this assessment tool to compare their results with normative data