The most problematic symptoms of prion disease - an analysis of carer experiences

Objectives: Prion diseases are rare dementias that most commonly occur sporadically, but can be inherited or acquired, and for which there is no cure. We sought to understand which prion disease symptoms are most problematic for carers, to inform the development of outcome measures. Design: Self-completed questionnaire with follow-up of a subset of participants by structured interview. Setting: A nested study in the UK National Prion Monitoring Cohort, a longitudinal observational study. Participants and measurements: 71 carers, of people with different prion diseases with a wide range of disease severity, identified 236 of their four most problematic symptoms by questionnaire which were grouped into ten domains. Structured interviews were then done to qualitatively explore these experiences. Eleven family carers of people with prion disease were selected, including those representative of a range of demographics and disease subtypes and those who cared for people with prion disease, living or recently deceased. Interviews were transcribed and formally studied. Results: The six most problematic symptom domains were: mobility and coordination; mood and behavior; personal care and continence; eating and swallowing; communication; and cognition and memory. The prevalence of these symptoms varied significantly by disease stage and type. A formal analysis of structured interviews to explore these domains is reported. Conclusions: We make suggestions about how healthcare professionals can focus their support for people with prion disease. Clinical trials that aim to generate evidence regarding therapies that might confer meaningful benefits to carers should consider including outcome measures that monitor the symptomatic domains we have identified as problematic

Understanding the lives of separating and separated families in the UK: what evidence do we need?

This study was designed to address three broad questions: What are the evidence – and data – needs around family separation in the UK? How far are these needs met by administrative, survey and other research data that currently exist or are in the process of being developed? What additional data are required, and how would these best be collected

Engaging Opportunities: Connecting young people with contemporary research and researchers

This is the final report for ‘Engaging Opportunities’, an RCUK-funded School-University Partnership between the Open University and the Denbigh Teaching School Alliance. Informed by action research, this four-year project was designed to create structured, strategic, sustainable and equitable mechanisms for effective school-university engagement with research. The report describes an evidence-based strategy designed to embed school-university engagement with research within the University’s strategic planning for research and the operational practices of researchers. Through the early stages of our partnership we noted a lack of suitable planning tools that work for researchers, teachers and students. We therefore introduced a flexible and adaptable framework of four types of activity—open lectures, open dialogues, open inquiry and open creativity—combined with an upstream approach to planning based on a set of six principles. A sub-set of these activities were evaluated through a combination of surveys, interviews and interventions. In conclusion, we argue that institutional and professional cultures can be resistant to the prospect of fully embedding school-university engagement with research in a structured, strategic and sustainable manner, and offer suggestions for how this context could and should be changed

Data Resource: population level family justice administrative data with opportunities for data linkage

Introduction Although there has been considerable progress in the use of administrative data for applied health research, the family justice field lags behind. Better use of administrative data is essential to enhance understanding of how the family justice system is working, as well as the characteristics of, and outcomes for, children and families. The Family Justice Data Partnership (FJDP) supports this aim through analyses of core family justice and linked datasets in the SAIL Databank (Secure Anonymised Information Linkage). Cafcass Cymru provide expert advice for children involved in family court proceedings in Wales, ensuring decisions are made in the best interests of the child. We provide an overview of Cafcass Cymru data. We also describe and illustrate linkage to administrative datasets within SAIL. Methods Cafcass Cymru data was transferred to SAIL using a standardised approach to provide de-identified data with Anonymised Linking Fields (ALF) for successfully matched records. Three cohorts were created: all individuals involved in family court applications; all individuals with an ALF allowing subsequent health data linkage; and all individuals with a Residential Anonymised Linking Field (RALF) enabling area-level deprivation analysis. Results Cafcass Cymru application data are available for child protection matters (public law, range 2011-2019, n=12,745), and child arrangement disputes (private law, range 2005-2019, n=52,023). An 80% data linkage match rate was achieved. 40% had hospital admissions within two years pre or post application; 54% had emergency department attendances and 61% had outpatient appointments. Individuals were more likely to reside in deprived areas regardless of law type. Conclusion Cafcass Cymru data can be accessed through the SAIL Databank. The FJDP will continue to enhance research opportunities for all to better understand the family justice system, and outcomes for those involved, such as health and wellbeing for children and family members

Teachers "Finding Peace in a Frantic World": An Experimental Study of Self-Taught and Instructor-Led Mindfulness Program Formats on Acceptability, Effectiveness, and Mechanisms.

Mindfulness training (MT) is considered appropriate for school teachers and enhances well-being. Most research has investigated the efficacy of instructor-led MT. However, little is known about the benefits of using self-taught formats, nor what the key mechanisms of change are that contribute to enhanced teacher well-being. This study compared instructor-led and self-taught MT based on a book (Williams & Penman, 2011) in a sample of secondary school teachers. We assessed expectancy, the degree to which participants believed the intervention was effective, their program engagement, well-being and psychological distress, and evaluated whether mindfulness and self-compassion skills acted as mediators of outcomes. In total, 206 teachers from 43 schools were randomized by school to an instructor-led or self-taught course-77% female, mean age 39 years (SD = 9.0). Both MT formats showed similar rates of participant expectancy and engagement, but the instructor-led arm was perceived as more credible. Using linear mixed-effects models, we found the self-taught arm showed significant pre-post improvements in self-compassion and well-being, while the instructor-led arm showed such improvements in mindfulness, self-compassion, well-being, perceived stress, anxiety, depression, and burnout. Changes over time significantly differed between the groups in all these outcomes, favoring the instructor-led arm. The instructor-led arm, compared with the self-taught, indirectly improved teacher outcomes by enhancing mindfulness and self-compassion as mediating factors. Mindfulness practice frequency had indirect effects on teacher outcomes through mindfulness in both self-taught and instructor-led arms. Our results suggest both formats are considered reasonable, but the instructor-led is more effective than the self-taught. Trial registration: ISRCTN18013311

Do adolescents like school-based mindfulness training? Predictors of mindfulness practice and responsiveness in the MYRIAD Trial

Objective We explored what predicts secondary school students’ mindfulness practice and responsiveness to universal school-based mindfulness training (SBMT), and how students experience SBMT. Method A mixed-methods design was used. Participants were 4,232 students (11-13 years of age), in 43 UK secondary schools, who received universal SBMT (ie, “.b” program), within the MYRIAD trial (ISRCTN86619085). Following previous research, student, teacher, school, and implementation factors were evaluated as potential predictors of students’ out-of-school mindfulness practice and responsiveness (ie, interest in and attitudes toward SBMT), using mixed-effects linear regression. We explored pupils’ SBMT experiences using thematic content analysis of their answers to 2 free-response questions, 1 question focused on positive experiences and 1 question on difficulties/challenges. Results Students reported practicing out-of-school mindfulness exercises on average once during the intervention (mean [SD] = 1.16 [1.07]; range, 0-5). Students’ average ratings of responsiveness were intermediate (mean [SD] = 4.72 [2.88]; range, 0-10). Girls reported more responsiveness. High risk of mental health problems was associated with lower responsiveness. Asian ethnicity and higher school-level economic deprivation were related to greater responsiveness. More SBMT sessions and better quality of delivery were associated with both greater mindfulness practice and responsiveness. In terms of students’ experiences of SBMT, the most frequent themes (60% of the minimally elaborated responses) were an increased awareness of bodily feelings/sensations and increased ability to regulate emotions. Conclusion Most students did not engage with mindfulness practice. Although responsiveness to the SMBT was intermediate on average, there was substantial variation, with some youth rating it negatively and others rating it positively. Future SBMT developers should consider co-designing curricula with students, carefully assessing the student characteristics, aspects of the school environment, and implementation factors associated with mindfulness practice and responsiveness. SBMT teacher training is key, as more observed proficiency in SBMT teaching is associated with greater student mindfulness practice and responsiveness to SBMT

M.I.C.E-Mental Health Intervention for Children with Epilepsy: a randomised controlled, multi-centre clinical trial evaluating the clinical and cost-effectiveness of MATCH-ADTC in addition to usual care compared to usual care alone for children and young people with common mental health disorders and epilepsy-study protocol.

BACKGROUND: Mental health disorders in the context of long-term conditions in children and young people are currently overlooked and undertreated. Evidence-based psychological treatments for common childhood mental health disorders (anxiety, depression and disruptive behaviour disorders) have not been systematically evaluated in young people with epilepsy despite their high prevalence in this population. The aim of this multi-site randomised controlled trial is to determine the clinical and cost-effectiveness of adding a modular psychological intervention to usual care for the mental health disorders in comparison to assessment-enhanced usual care alone. METHODS: In total, 334 participants aged 3-18 years attending epilepsy services will be screened for mental health disorders with the Strengths and Difficulties Questionnaire (SDQ) and the diagnostic Development and Wellbeing Assessment (DAWBA). Those identified as having a mental health disorder and consenting to the trial will be randomised to either receive up to 22 sessions of the modular psychological intervention (MATCH-ADTC) delivered over the telephone over 6 months by non-mental health professionals in addition to usual care or to assessment-enhanced usual care alone. Outcomes will be measured at baseline, 6 months and 12 months post-randomisation. It is hypothesised that MATCH-ADTC plus usual care will be superior to assessment-enhanced usual care in improving emotional and behavioural symptoms. The primary outcome is the SDQ reported by parents at 6 months. Secondary outcomes include parent-reported mental health measures such as the Revised Children's Anxiety and Depression Scale, quality of life measures such as the Paediatric Quality of Life Inventory and physical health measures such as the Hague Seizure Severity Scale. Outcome assessors will be blinded to group assignment. Qualitative process evaluations and a health economic evaluation will also be completed. DISCUSSION: This trial aims to determine whether a systematic and integrated approach to the identification and treatment of mental health disorders in children and young people with epilepsy is clinically and cost-effective. The findings will contribute to policies and practice with regard to addressing mental health needs in children and young people with other long-term conditions. TRIAL REGISTRATION: ISRCTN ISRCTN57823197 . Registered on 25 February 2019

Training School Teachers to Deliver a Mindfulness Program: Exploring Scalability, Acceptability, Effectiveness, and Cost-effectiveness.

BACKGROUND: There is growing research support for the use of mindfulness training (MT) in schools, but almost no high-quality evidence about different training models for people wishing to teach mindfulness in this setting. Effective dissemination of MT relies on the development of scalable training routes. OBJECTIVE: To compare 4 training routes for school teachers wishing to deliver MT differing in intensity and potential scalability, considering teaching competency, training acceptability, and cost-effectiveness. METHODS: Schools were randomized to an existing route comprising an 8-session instructor-led personal mindfulness course, combined with 4-day MT program training, or 1 of 3 more scalable, lower intensity, alternatives: an instructor-led personal mindfulness course combined with 1-day MT program training, a self-taught personal mindfulness course (delivered through a course book) combined with 4-day MT program training, and a self-taught personal mindfulness course combined with 1-day MT program training. RESULTS: Attrition from training was substantial across all routes. The instructor-led course was more effective than the self-taught course in increasing teachers' personal mindfulness skills. Even the most intensive (existing) training route brought only 29% of the teachers commencing training, and 56% of those completing the study protocol, to the required minimum competency threshold (an advanced beginner rating on an adapted version of the Mindfulness-based Interventions Teaching Assessment Criteria). The differences in levels of competency achieved by existing training compared with the more scalable alternatives were modest, with economic evaluation suggesting that the existing route was both more expensive and more effective than lower intensity alternatives, but with no statistically significant differences between routes. CONCLUSIONS: This research questions the move toward abbreviating teacher training to increase scalability and suggests instead that many teachers require additional support to ensure competency from first delivery of MT in the classroom

Between the blabbering noise of individuals or the silent dialogue of many: a collective response to 'Postdigital Science and Education' (Jandrić et al. 2018)

This article is a multi-authored response to an editorial ‵Postdigital Science and Education′ published in 2018 by Petar Jandrić, Jeremy Knox, Tina Besley, Thomas Ryberg, Juha Suoranta and Sarah Hayes in Educational Philosophy and Theory as a mission statement for the journal Postdigital Science and Education. Nineteen authors were invited to produce their sections, followed by two author-reviewers who examined the article as a whole. Authors’ responses signal the sense of urgency for developing the concept of the postdigital and caution about attempts at simplifying complex relationships between human beings and technology. Whilst the digital indeed seems to become invisible, we simultaneously need to beware of its apparent absence and to avoid over-emphasizing its effects. In this attempt, authors offer a wide range of signposts for future research such as ‘the critical postdigital’ and ‘postdigital reflexivity’; they also warn about the group’s own shortcomings such as the lack of ‘real’ sense of collectivity. They emphasize that postdigital education must remain a common good, discuss its various negative aspects such as smartphone addiction and nomophobia, and exhibit some positive examples of postdigital educational praxis. They discuss various aspects of postdigital identities and point towards the need for a postdigital identity theory. With these varied and nuanced responses, the article opens a wide spectrum of opportunity for the development of postdigital approaches to science and education for the future