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Background: Early language delay is exacerbated by social disadvantage. Factors such as parents' low levels of literacy, confidence and self‐perception can affect the capacity to act on advice received, critical to empowerment. Methods used to achieve successful health outcomes in socially disadvantaged clinical populations may need enhancing. Aims: To compare the impact of standard parent‐based intervention (PBI) to enhanced PBI for young children with speech, language and communication needs (SCLN) and their families living in more socially disadvantaged populations. Methods and Procedures: A multicentre clustered blind randomised controlled trial was used to compare the effect of parent‐based group interventions to improve early language development with children (mean age 27.5 months) from more socially disadvantaged populations with an expressive vocabulary of 40 or less single words. Intervention sessions were delivered by a speech and language therapist, over a 20‐week period. Participants received one of two interventions: (1) Standard Care – indirect group PBI – (PBI) (2) Enhanced Care: indirect group enhanced PBI – (EPBI). Both standardised and non‐standardised measures were used as outcomes. Parent engagement in the intervention was captured through analysis of attendance and the Parent Activation Measure – Speech & Language Therapy (PAM‐SLT) (Insignia Health, 2014). The PAM measures a person's knowledge, skills and confidence to manage their own health and well‐being (NHS England, 2018). In this study, activation referred to parents' knowledge, skills and confidence to manage their child's language development. Outcomes and Results: One hundred fifty‐five participants were randomised at baseline. Children in both groups made significant improvements in the outcome on MacArthur‐Bates Communicative Development Inventories Sentence Length, from pre‐intervention to post‐intervention and 6 months post‐intervention (p < 0.05). Changes in vocabulary and expressive language skills were more equivocal, showing wide variation in confidence intervals for both groups. Where parents attended at least one intervention session almost all effect sizes were in favour of the EPBI intervention. Parents' activation levels significantly increased for both groups (EPBI p < 0.001, PBI p = 0.003), with a moderate effect size in favour of EPBI (Hedges' G 0.37, confidence interval –0.02 to 0.76), although wide variation was found. Conclusions and Implications: This trial provides some evidence of facilitating the language development of children with SLCN from more socially disadvantaged areas through supporting caregivers. However, we found variation in outcomes; some children made excellent progress, whilst others did not. Further exploration of parent engagement and its relationship to child language outcomes will be valuable to understanding more about mechanisms of change in interventions that involve parents. WHAT THIS PAPER ADDS: What is already known on the subject: Speech, language and communication needs (SLCN) have a knock‐on effect on emotional well‐being, school readiness, literacy and school attainment, putting children at increased risk of long‐term consequences such as poor literacy, mental health problems and unemployment. In disadvantaged areas, the prevalence of language difficulties is higher than elsewhere. Factors such as parents' low levels of literacy, confidence and self‐perception can affect the capacity to act on advice received, critical to empowerment. What this paper adds to existing knowledge: Children with SLCN from more socially disadvantaged areas can make improvements in their language development through parent intervention, although wide individual variation was found. There was some evidence that children achieve better outcomes with EPBI, which employed an interagency collaborative approach. Parent's engagement (activation levels) increased significantly over time with intervention, with the increase twice as big for EPBI. What are the potential or actual clinical implications of this work?: This trial provides some evidence that it is possible to facilitate the language development of children from more socially disadvantaged areas through supporting their caregivers. Further research would be useful to determine whether increases in parent engagement are related to adherence to intervention and change in child outcomes. [ABSTRACT FROM AUTHOR]

Background: Co‐production is predicated on equal power‐sharing and responsibility in research partnerships. However, relatively few accounts exist that explore the subjective experience of how co‐researchers achieve such equality, from the perspectives of public contributors and researchers. Aim: This paper aims to provide a unique insight into the process of co‐production, by weaving personal reflections with principles to evaluate the impact arising from co‐produced knowledge. It is based upon participatory research that was initiated by a 'lay' person, on behalf of a community organization, seeking support for Somali families who are affected by autism. The paper explores the evolving partnerships that began with community theatre and qualitative research and leading to extensive dissemination and impact, all of which has been jointly owned and negotiated by the co‐researchers and community organizations. Discussion: Initially, this paper reflects on the process, drawing on principles defined for co‐production in health research and combining it with the co‐researcher's personal reflections of their experiences as insiders and outsiders, stepping in and out of each other's worlds. The value of reciprocity, flexibility and continuous reflection is illustrated. The latter part of the paper explores the impact of this co‐produced knowledge using a theoretical framework, to assess the specific impacts and its broader transformative potential. It demonstrates how (1) opportunities for all partners to be equitably involved to the maximum degree possible throughout the research process can affect social change and (2) co‐produced research can become a catalyst that is dynamic and complex, achieving multi‐layered impact. [ABSTRACT FROM AUTHOR]

Background: Very young children from lower socioeconomic status (SES) backgrounds often show poorer language development. Whilst there have been attempts to provide early intervention programmes, these sometimes miss the most disadvantaged groups. Aims: This report presents preliminary feasibility and effectiveness data for a novel language intervention designed for parents of toddlers in the United Kingdom. Methods and Procedures: In total, 43 UK families of 2–4‐year‐olds were recruited to the study, half of whom completed an 8‐week course (Tots Talking) focussed on parent interaction, and half of whom acted as wait‐list controls. Results and Outcomes: Results suggest that such programmes are feasible for families with 86% staying in the intervention. In addition, greater changes in underlying communication skills such as joint attention and gesture were evident compared to wait‐list controls. Conclusions and Implications: We conclude that pre‐verbal skills may be more important to measure as initial outcomes than language or vocabulary change in this population. What This Paper Adds: What is already known on the subject: Children from lower socioeconomic status (SES) backgrounds are at higher risk of communication difficulties and there is a need for community intervention programmes for very young children. What this study adds: This study suggests that such programmes can be feasible and effective, but that very early/basic communicative skills (such as joint attention) may be boosted first rather than language or vocabulary. What are the clinical implications of this work?: Children's centres and other community services could feasibly run short parent facing courses emphasising contingent communication in low SES families and other diverse groups. These may be more successful run with younger preschoolers. Joint attention may be a better focus of intervention before expecting vocabulary or language change. Community health professionals may find this information useful in referring and supporting families in need. [ABSTRACT FROM AUTHOR]

Background: Engaging with the public is a key element of health research; however, little work has examined experiences of public involvement in research dissemination. The aim of this paper was to assess the extent of public involvement, experiences of public advisers and resulting changes in the dissemination of the North West Coast Household Health Survey (HHS). Methods: Three writing groups allowed public advisers to contribute to the dissemination of the HHS. A public workshop was set up to aid the co‐production of the research evidence and discuss the experiences of public advisers involved with the survey in March 2018. A focus group with public advisers was conducted in August 2018 to understand their experiences of involvement. Data were analysed using thematic analysis and coded by two researchers. Writing groups are still on‐going. Results: Fourteen public advisers contributed via three face‐to‐face writing groups, by actively interpreting findings and helping in the write‐up of research articles and by presenting talks at the public workshop. At the workshop, seven public advisors contributed to setting priorities for data analysis from the HHS. Five public advisers took part in the focus group, which highlighted that whilst public advisers were generally satisfied with their involvement, they would like to be involved in more activities. Conclusions: Members of the public shaped the dissemination of evidence and provided guidance for future steps. Public advisers were mostly positive about their involvement in the dissemination of the HHS, but highlighted the need for more transparency and support from researchers. [ABSTRACT FROM AUTHOR]

Value sets for the EQ-5D-5L are required to facilitate its use in estimating quality-adjusted life years. An international protocol has been developed to guide the collection of stated preference data for this purpose and has been used to generate EQ-5D-5L valuation data for England. The aim of this paper is report the innovative methods used for modelling those data to obtain a value set. Nine hundred and ninety-six members of the English general public completed time trade-off (TTO) and discrete choice experiment (DCE) tasks. We estimate models, with and without interactions, using DCE data only, TTO data only, and TTO/DCE data combined. TTO data are interpreted as both left and right censored. Heteroskedasticity and preference heterogeneity between individuals are accounted for. We use Bayesian methods in the econometric analysis. The final model is chosen based on the deviance information criterion (DIC). Censoring and taking account of heteroskedasticity have important effects on parameter estimation. For DCE data only, TTO data only, and DCE/TTO data combined, models with parameters for all dimensions and levels perform best, as judged by the DIC. Taking account of heterogeneity improves fit, and the multinomial model reports the lowest DIC. This paper presents approaches that suit observed characteristics of EQ-5D-5L valuation data and recognise respondents' preference heterogeneity. The methods described are potentially relevant to other value set studies. [ABSTRACT FROM AUTHOR]

The social positioning and treatment of persons with dementia reflects dominant biomedical discourses of progressive and inevitable loss of insight, capacity, and personality. Proponents of person-centred care, by contrast, suggest that such loss can be mitigated within environments that preserve rather than undermine personhood. In formal organisational settings, person-centred approaches place particular responsibility on 'empowered' direct-care staff to translate these principles into practice. These staff provide the majority of hands-on care, but with limited training, recognition, or remuneration. Working within a Foucauldian understanding of power, this paper examines the complex ways that dementia care staff engage with their own 'dis/empowerment' in everyday practice. The findings, which are drawn from ethnographic studies of three National Health Service ( NHS) wards and one private care home in England, are presented as a narrative exploration of carers' general experience of powerlessness, their inversion of this marginalised subject positioning, and the related possibilities for action. The paper concludes with a discussion of how Foucault's understanding of power may help define and enhance efforts to empower direct-care staff to provide person-centred care in formal dementia care settings. [ABSTRACT FROM AUTHOR]

Background: We assessed experiences of human papillomavirus (HPV) vaginal self‐sampling and future screening preferences in an ethnically and socio‐economically diverse group of women overdue for cervical screening. Setting and Participants: A postal questionnaire was embedded in the YouScreen self‐sampling trial in England: 32.5% (2712/8338) of kit completers returned the survey. Kit non‐completers were encouraged to return a questionnaire, but no responses were received. Participants were ethnically diverse (40.3% came from ethnic minority backgrounds), and 59.1% came from the two most deprived quintiles. Differences in confidence in kit completion, trust in the test results and intention to attend a follow‐up test if HPV‐positive were evaluated using Pearson's χ2 analyses. Binary logistic regression models explored predictors of a future screening choice and preferences for urine versus vaginal self‐sampling. Results: Most kit‐completers reported high confidence in self‐sampling (82.6%) and high trust in the results (79.9%), but experiences varied by ethnicity and screening status. Most free‐text comments were positive but some reported difficulties using the device, pain or discomfort. Most women would opt for self‐sampling in the future (71.3% vs. 10.4% for a clinician‐taken test) and it was more often preferred by ethnic minority groups, overdue screeners and never attenders. Urine self‐tests were preferred to vaginal tests (41.9% vs. 15.4%), especially among women from Asian, Black or Other Ethnic backgrounds. Conclusions: Kit‐completers were confident, found the test easy to complete, and trusted the self‐sample results. However, experiences varied by ethnic group and some women highlighted difficulties with the kit. Most women would prefer self‐sampling in the future, but it was not a universal preference, so offering a choice will be important. Patient or Public Contribution: We did not have direct patient and public involvement and engagement (PPIE) in the questionnaire design. However, patients and public representatives did input into the design of the YouScreen trial and reviewed the wider study materials (e.g. participant information sheet). Trial Registration: This questionnaire study was embedded in the YouScreen trial. The protocol for the YouScreen trial is available at https://www.isrctn.com/ISRCTN12759467. The National Institute for Health Research 43 Clinical Research Network (NIHR CRN) Central Portfolio Management System (CPMS) ID is 4441934. [ABSTRACT FROM AUTHOR]

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The purpose of this paper is to explore negative peer interactions in foster care. Looked after children and young people have highlighted the impact of negative peer interactions, and especially peer violence and intimidation, on their care experiences. However, to date, no specific fostering research has addressed this important issue. In response to this gap, we undertook focus groups with 32 foster carers in the South West of England. Group discussions were semi-structured based around the issue of negative peer interactions in foster care. The analysis revealed five main associated themes: the impact on the carers' birth children; a lack of placement planning; inadequate referral information; a negative view of social work support; and insufficient external interventions. Copyright © 2015 John Wiley & Sons, Ltd. Key Practitioner Messages Negative peer interactions, particularly violence, were a major concern for foster carers, especially if they negatively impacted on the welfare of carers' birth children., An absence of pre-placement referral information on negative peer interactions was commonly reported and placed all children in the fostering household at risk., Associated social work support and external interventions were often perceived as lacking and inadequate., Fostering procedures, review and decisions need to recognise the impact of peer violence on all members of the fostering household. [ABSTRACT FROM AUTHOR]

This paper reports findings about parents' experiences of caring for young people with Autistic Spectrum Conditions (ASCs) moving into adulthood. In‐depth interviews were conducted with 38 parents of young people (15–21 years) with ASCs. Data were analysed thematically. In the perceived absence of service support, parents' acted as ‘care‐coordinators’ and ‘life‐supporters’ for their child as they moved into adulthood. These roles came with little choice, emotional demands and personal restrictions. Being supported was important for parents, but preferences differed regarding what this should look like. Implications for policy are discussed. [ABSTRACT FROM AUTHOR]

Background: Adults with intellectual disabilities often display behaviour that challenges that is a result of biological differences, psychological challenges, and lack of appropriate social support. Intensive Support Teams (IST) are recommended to support the care needs of this group and avoid hospitalisation. However, little attention has been paid to the perspectives of stakeholders who manage, work in, or use ISTs. Method: Interviews and focus groups were conducted with 50 stakeholders (IST service managers and professionals, adults with intellectual disabilities, and family and paid carers) of ISTs. Services operated according to one of two service models previously identified in ISTs in England (enhanced or independent). Results: Thematic analysis identified accessible and flexible support, individualised care, and the involvement of carers and other relevant agencies in management plans and reviews as features of good IST care highlighted by all stakeholder groups. IST managers and professionals described the key challenges of current IST provision as unclear referral criteria, limited interfaces with other local services, and perceived threats associated with funding and staff retention. Findings were similar between the two IST models. Conclusions: ISTs are able to offer care and specialist support that is valued by families, service users and other care providers. However, they face several operational challenges that should be addressed if ISTs are to reach their potential along with community intellectual disability services in supporting adults with intellectual disabilities who display behaviour that challenges in the community. [ABSTRACT FROM AUTHOR]

Spontaneous imaginary companion (SIC) creation in childhood is a typical imaginative play behaviour associated with advanced sociocognitive skills; however, the direction of causality has not been established. To investigate this experimentally, researchers must determine whether children can create, on request, qualitatively equivalent imaginary companions (ICs) to those created spontaneously. We examined whether children could create ICs, and how these compared to SICs. Nine elementary school children were encouraged to create ICs in a 3‐month intervention. Accounts of elicited ICs were compared with an age‐matched sample of interviewees with SICs. Seven children maintained ICs for 6 months post intervention. Template analysis of IC interviews found four themes: Realistic Play, Multifaceted IC Mind, Utility of the IC, and Elicited IC Across Time. Analysis suggests elicited and SICs were similar in nature and utility, although intervention ICs tended to have animal rather than human appearances. Findings support the argument that children can be encouraged to create ICs similar to SICs. [ABSTRACT FROM AUTHOR]

Breastfeeding is the most accessible and cost‐effective activity available to public health and has been shown to be one of the most effective preventive measures mothers can take to protect their children's health. Despite the well‐documented benefits, the UK has one of the lowest breastfeeding rates in the world. The Becoming Breastfeeding Friendly (BBF) toolkit was developed through highly structured technical and academic collaboration, led by Yale University. It provides an evidence‐based process to help countries assess their breastfeeding status and readiness to scale up, and identifies concrete measures countries can take to sustainably increase breastfeeding rates, based on data‐driven recommendations. BBF is grounded in the Breastfeeding Gear Model complex adaptive systems framework which is made up of eight simultaneous conditions that sustain breastfeeding. In 2018, a committee of multi‐agency stakeholders implemented the BBF process in England, collecting evidence to score the 'gear' components of England's breastfeeding environment against 54 benchmarks. The Training and Programme Delivery gear received the highest score, attributable to existing learning outcomes for health professionals and practitioners, peer supporters and specialist services, although there is a need for greater coordination and integration. The lowest scores were given for Promotion and Coordination, Goals and Monitoring due to the lack of a dedicated national strategy for breastfeeding and poor sharing of localised strategies and programmes. The process generated clear recommendations highlighting the need for more robust routine infant feeding data collection and reporting, and the necessity for strengthening leadership, monitoring and oversight to scale up and sustain breastfeeding. Key messages: England's overall weighted Becoming Breastfeeding Friendly (BBF) Index score was 1.1 (range 0–3) representing a moderate scaling up environment (range 1.1–2.0). Five gears: Political Will, Legislation and Policies, Funding and Resources; Training and Programme Delivery and Research and Evaluation scored at a moderate gear strength, while the remaining three gears—Advocacy, Promotion and Coordination Goals and Monitoring—were weak.The BBF process for England highlighted substantial gaps in the current breastfeeding practice data and recommended that more robust routine, population‐level infant feeding data collection and reporting is initiated that goes beyond 6–8 weeks and up to 2 years.The process identified that the lack of a national infant feeding co‐ordinator role or national breastfeeding committee had resulted in no dedicated workplan and a lack of advocacy for breastfeeding programmes. The need for greater future coordination, strategic goal setting and consistent monitoring was recommended to strengthen the breastfeeding environment. [ABSTRACT FROM AUTHOR]

Background Establishing what constitutes clinically significant change is important both for reviewing the function of services and for reflecting on individual clinical practice. A range of methods for assessing change exist, but it remains unclear which are best to use and under which circumstances. Method This paper reviews four indices of change [difference scores ( DS), crossing clinical threshold ( CCT), reliable change index ( RCI) and added value scores ( AVS)] drawing on outcome data for 9764 young people from child and adolescent mental health services across England. Results Looking at DS, the t-test for time one to time two scores indicated a significant difference between baseline and follow up scores, with a standardised effect size of d = 0.40. AVS analysis resulted in a smaller effect size of 0.12. Analysis of those crossing the clinical threshold showed 21.2% of cases were classified as recovered, while 5.5% were classified as deteriorated. RCI identified 16.5% of cases as showing reliable improvement and 2.3% of cases as showing reliable deterioration. Across RCI and CCT 80.5% of the pairings were exact (i.e., identified in the same category using each method). Conclusions Findings indicate that the level of agreement across approaches is at least moderate; however, the estimated extent of change varied to some extent based on the index used. Each index may be appropriate for different contexts: CCT and RCI may be best suited to use for individual case review; whereas DS and AVS may be more appropriate for case-mix adjusted national reporting. [ABSTRACT FROM AUTHOR]

Aims: To develop a questionnaire to identify Intensive Care survivor needs at key transitions during the recovery process, and assess its validity and reliability in a group of ICU survivors. Methods: Development of the Support Needs After ICU (SNAC) questionnaire was based on a systematic scoping review, and analysis of patient interviews (n = 22). Face and content validity were assessed by service users (n = 12) and an expert panel of healthcare professionals (n = 6). A pilot survey among 200 ICU survivors assessed recruitment at one of five different stages after ICU discharge [(1) in hospital, (2) < 6 weeks, (3) 7 weeks to 6 months, (4) 7 to 12 months, or (5) 12 to 24 months post‐hospital discharge]; to assess reliability of the SNAC questionnaire; and to conduct exploratory data analysis. Reliability was determined using Cronbach's alpha for internal consistency; intraclass correlation coefficients for test–retest reliability. We explored correlations with sociodemographic variables using Pearson's correlation coefficient; differences between questionnaire scores and patient demographics using one‐way ANOVA. Results: The SNAC questionnaire consisted of 32 items that assessed five categories of support needs (informational, emotional, instrumental [e.g. practical physical help, provision of equipment or training], appraisal [e.g. clinician feedback on recovery] and spiritual needs). ICU survivors were recruited from Northern Ireland, England and Scotland. From a total of 375 questionnaires distributed, 202 (54%) were returned. The questionnaire had high internal consistency (0.97) and high test–retest reliability (r = 0.8) with subcategories ranging from 0.3 to 0.9. Conclusions: The SNAC questionnaire appears to be a comprehensive, valid, and reliable questionnaire. Further research will enable more robust examination of its properties e.g. factor analysis, and establish its utility in identifying whether patients' support needs evolve over time. Relevance to clinical practice: The SNAC questionnaire has the potential to be used to identify ICU survivors' needs and inform post‐hospital support services. [ABSTRACT FROM AUTHOR]

Drawing upon the ability-motivation-opportunity ( AMO) framework, our study extends understanding of the interaction between human resource ( HR) practices and the brokering of knowledge by hybrid middle managers. Examining health care delivered to older people in a hospital setting, our study highlights that hybrid nurse middle managers broker knowledge downward through professional hierarchy to their peer group, but find it difficult to broker knowledge upward. Meanwhile, because they lack legitimacy with doctors, they lack the opportunity to broker knowledge interprofessionally. Hybrid medical middle managers are potentially more able to broker knowledge within their peer group. However, some of lower status intraprofessionally, like nurses, may lack legitimacy and opportunity to do so. Meanwhile, higher-status medical middle managers may lack motivation to engage in knowledge brokering with peers outside their specialism. We suggest that inter- and intraprofessional power and status has important implications for HR practices to support knowledge brokering by hybrid middle managers. Should HR practices fail to support ability, motivation, and opportunity for knowledge brokering across and within professions, then a 'broken' rather than 'broker' chain may result. © 2015 Wiley Periodicals, Inc. [ABSTRACT FROM AUTHOR]

Based on a three-year ethnographic study of four UK National Health Service (NHS) organizations, we explore the everyday cultural experience of managing clinical and administrative workforces. Although NHS organizations claim to function as enlightened HRM employers, we argue that the inflexible application of metrics-based target systems to clinical and administrative tasks, including HRM operations, can result in dysfunctional outcomes for patient care and workforce morale. Reminiscent of the recent Mid Staffordshire health care scandal, the priorities attached to NHS personnel meeting the demands of performance management systems can prove incompatible with them also meeting the fundamental 'human' needs of patients. The everyday experience of health care organization becomes one of employees reconciling competing logics of business efficiency and integrity of care. Trapped metaphorically between shrinking resources and expanding targets, the inclination-on the frontline and at mid-management level-is to extend the integrity of care, although this is sometimes impossible and can prove problematic in terms of system accountability. In response to such organizational tensions the behavior of many frontline and mid-management staffs ultimately reflects a form of 'street-level bureaucracy'-a situation in which traditional professional norms are reasserted informally in ways that often transgress prescribed performance systems. © 2015 Wiley Periodicals, Inc. [ABSTRACT FROM AUTHOR]

Background: It is widely acknowledged that inadequate handovers are associated with putting patients at risk in clinical settings; however, handover practices have received little attention in other 24‐hr settings such as long‐stay residential care facilities. Aim: This study aimed to explore the perceived purpose and organisational processes involved in the handover of information between shifts of staff caring for older residents in five care homes in England. Methods: The study took an ethnographic approach to fieldwork, undertaken between February and June 2016. It consisted of observations of handovers (n = 12) and interviews with managers, Registered Nurses (RNs) and care assistants (n = 27) working day and night shifts. Interview transcripts and observation notes were analysed within NVivo using a matrix approach. Results: Handovers were highly variable in all five care homes in relation to their timings, locations, content and participants. Managers and RNs highlighted handovers as an opportunity for risk assurance, supervision, team building, staff education and monitoring of residents' clinical status. In comparison, care assistants considered the purpose of handovers to be prepared for the responsibilities of working a shift. The discussion addresses implications of these findings, particularly consideration of how best use can be made of RN skills and knowledge in handovers. Conclusion: Research is needed to identify whether care home resident safety can be linked to handover practices and how the presence of RNs in handovers in care homes affects this. Implications for practice: Care home managers, RNs and care workers may find this research useful in practice when considering how best to organise handovers and deploy staff in care homes for older people. [ABSTRACT FROM AUTHOR]

We seek to explain the development of the educational gap between children in "out‐of‐home care" (CLA), children deemed in social need (CIN), and other pupils. A cohort of 642,805 pupils aged 16 in 2013 was used to chart the educational progress of the full cohort, the CLA (n = 6,236), the CIN in 2012 or 2013 but not CLA (n = 20,384), and a sample individually matched with the CLA (n = 11,084). At age 7, attainment of the CLA and CIN was approximately 1 standard deviation lower than the cohort average and predicted attainment at 16. At this point, the persistent "CIN" (those with earlier and persistent needs) had the lowest attainment relative to others, and this declined further during secondary school. Those entering care before or during primary school had very low attainment at age 7, but their relative attainment did not decline. Attainment of CLA and CIN at age 16 likely reflects early environment, special educational needs, and poor relationships with secondary school. Policy, research, and intervention should focus on CIN as well as CLA, do so before entry to care, and take account of the onset of, and probable reasons for, educational difficulties. [ABSTRACT FROM AUTHOR]

Objective: To evaluate factors affecting unselected population-based BRCA testing in Ashkenazi Jews (AJ).Design: Cohort-study set within recruitment to the GCaPPS trial (ISRCTN73338115).Setting: North London AJ population.Population or Sample: Ashkenazi Jews women/men >18 years, recruited through self-referral.Methods: Ashkenazi Jews women/men underwent pre-test counselling for BRCA testing through recruitment clinics (clusters). Consenting individuals provided blood samples for BRCA testing. Data were collected on socio-demographic/family history/knowledge/psychological well-being along with benefits/risks/cultural influences (18-item questionnaire measuring 'attitude'). Four-item Likert-scales analysed initial 'interest' and 'intention-to-test' pre-counselling. Uni- and multivariable logistic regression models evaluated factors affecting uptake/interest/intention to undergo BRCA testing. Statistical inference was based on cluster robust standard errors and joint Wald tests for significance. Item-Response Theory and graded-response models modelled responses to 18-item questionnaire.Main Outcome Measures: Interest, intention, uptake, attitude towards BRCA testing.Results: A total of 935 individuals (women = 67%/men = 33%; mean age = 53.8 (SD = 15.02) years) underwent pre-test genetic-counselling. During the pre-counselling, 96% expressed interest in and 60% indicated a clear intention to undergo BRCA testing. Subsequently, 88% opted for BRCA testing. BRCA-related knowledge (P = 0.013) and degree-level education (P = 0.01) were positively and negatively (respectively) associated with intention-to-test. Being married/cohabiting had four-fold higher odds for BRCA testing uptake (P = 0.009). Perceived benefits were associated with higher pre-counselling odds for interest in and intention to undergo BRCA testing. Reduced uncertainty/reassurance were the most important factors contributing to decision-making. Increased importance/concern towards risks/limitations (confidentiality/insurance/emotional impact/inability to prevent cancer/marriage ability/ethnic focus/stigmatisation) were significantly associated with lower odds of uptake of BRCA testing, and discriminated between acceptors and decliners. Male gender/degree-level education (P = 0.001) had weaker correlations, whereas having children showed stronger (P = 0.005) associations with attitudes towards BRCA testing.Conclusions: BRCA testing in the AJ population has high acceptability. Pre-test counselling increases awareness of disadvantages/limitations of BRCA testing, influencing final cost-benefit perception and decision-making on undergoing testing.Tweetable Abstract: BRCA testing in Ashkenazi Jews has high acceptability and uptake. Pre-test counselling facilitates informed decision-making. [ABSTRACT FROM AUTHOR]

Background: Reciprocal relationships between researchers and patient and public involvement (PPI) contributors can enable successful PPI in research. However, research and anecdotal evidence suggest that researchers do not commonly provide feedback to PPI contributors thus preventing them from knowing whether, how or where their contributions were useful to researchers and research overall. Aims: The aim of this study was to explore the variation, types, importance of, and satisfaction with feedback given by researchers to PPI contributors in six PPI groups in England, and identify the barriers to the process of feedback. Methods: An explanatory mixed methods sequential study design with a questionnaire survey followed by semi‐structured interviews with researchers and PPI contributors in six PPI groups. PPI contributors were involved in all stages of the research process. Results: Researchers do not routinely give feedback to PPI contributors. Feedback was found to have different meanings: an acknowledgement, impact and study success and progress. PPI contributors who receive feedback are motivated for further involvement; it supports their learning and development and prompts researchers to reflect on PPI impact. The importance of the role of a PPI lead or coordinator to facilitate the process of providing feedback was also highlighted. Conclusion: This study found no generic way to give feedback indicating that mutual feedback expectations should be discussed at the outset. PPI feedback needs to become integral to the research process with appropriate time and resources allocated. PPI feedback can be seen as a key indicator of mature, embedded PPI in research. [ABSTRACT FROM AUTHOR]

Introduction and Aims: Naloxone is an opioid antagonist used for emergency resuscitation following opioid overdose. Prisoners with a history of heroin use by injection have a high risk of drug-related death in the first weeks after prison-release. The N-ALIVE trial was planned as a large prison-based randomised controlled trial (RCT) to test the effectiveness of naloxone-on-release in the prevention of fatal opiate overdoses soon after release. The N-ALIVE pilot trial was conducted to test the main trial's assumptions on recruitment of prisons and prisoners, and the logistics for ensuring that participants received their N-ALIVE pack on release.Design and Methods: Adult prisoners who had ever injected heroin, were incarcerated for ≥7 days and were expected to be released within 3 months were eligible. Participants were randomised to receive, on liberation, a pack containing a single 'rescue' injection of naloxone or a control pack with no naloxone syringe. The trial was double-blind prior to prison-release.Results: We randomised 1685 prisoners (842 naloxone; 843 control) across 16 prisons in England. We stopped randomisation on 8 December 2014 because only one-third of administrations of naloxone-on-release were to the randomised ex-prisoner; two-thirds were to others whom we were not tracing.Discussion and Conclusions: Prevention RCTs are seldom conducted within prisons; we demonstrated the feasibility of conducting a multi-prison RCT to prevent fatality from opioid overdose in the outside community. We terminated the N-ALIVE trial due to the infeasibility of individualised randomisation to naloxone-on-release. Large RCTs are feasible within prisons. [ABSTRACT FROM AUTHOR]

Long-term care services are provided to help people manage the consequences of impairment, but their impact goes beyond the meeting of basic needs. Accordingly, the main aim was to explore the marginal effectiveness of care when measured in terms of people's overall care-related quality of life (CRQoL) and assess changes in marginal effect for increasing intensity. The associated aim was to refine and apply an observational method to estimate marginal effectiveness. A "production function" approach was used with survey data, including Adult Social Care Outcomes Toolkit-measured CRQoL, whereby we statistically modelled the expected relationship between service utilisation rates and CRQoL. This method seeks to limit endogeneity issues by controlling on observables and using instrumental variable. Using a survey of publicly funded long-term care service users in England, we found that community-based long-term care significantly improved people's CRQoL but with diminishing marginal effects and effects differentiated by baseline impairment levels. There are implications for how the care system should respond to changes in global public budgets. For example, where there is unmet need, a system aimed to maximise (unadjusted) CRQoL would put more emphasis on access (more recipients) than intensity of support compared to a system operating on a needs basis. [ABSTRACT FROM AUTHOR]

Patient non-attendance can lead to worse health outcomes and longer waiting times. In the English National Health Service, around 7% of patients who are referred by their general practice for a hospital outpatient appointment fail to attend. An electronic booking system (Choose and Book-C&B) for general practices making hospital outpatient appointments was introduced in England in 2005 and by 2009 accounted for 50% of appointments. It was intended, inter alia, to reduce the rate of non-attendance. Using a 2004-2009 panel with 7,900 English general practices, allowing for the relaxation of constraints on patient of hospital, and for the potential endogeneity of use of C&B, we estimate that the introduction of C&B reduced non-attendance by referred patients in 2009 by 72,160 (8.7%). [ABSTRACT FROM AUTHOR]

Public sector organisations pursue multiple objectives and serve a number of stakeholders. But stakeholders are rarely explicit about the valuations they attach to different objectives, nor are these valuations likely to be identical. This complicates the assessment of their performance because no single set of weights can be chosen legitimately to aggregate outputs into unidimensional composite scores. We propose the use of dominance criteria in a multidimensional performance assessment framework to identify best practice and poor performance under relatively weak assumptions about stakeholders' preferences. We use as an example providers of hip replacement surgery in the English National Health Service and estimate multivariate multilevel models to study their performance in terms of length of stay, readmission rates, post-operative patient-reported health status and waiting time. We find substantial correlation between objectives and demonstrate that ignoring the correlation can lead to incorrect assessments of performance. [ABSTRACT FROM AUTHOR]

A new version of the EQ-5D, the EQ-5D-5L, is available. The aim of this study is to produce a value set to support use of EQ-5D-5L data in decision-making. The study design followed an international research protocol. Randomly selected members of the English general public completed 10 time trade-off and 7 discrete choice experiment tasks in face-to-face interviews. A 20-parameter hybrid model was used to combine time trade-off and discrete choice experiment data to generate values for the 3,125 EQ-5D-5L health states. Valuation data are available for 996 respondents. Face validity of the data has been demonstrated, with more severe health states generally given lower values. Problems with pain/discomfort and anxiety/depression received the greatest weight. Compared to the existing EQ-5D-3L value set, there are considerably fewer "worse than dead" states (5.1%, compared with over one third), and the minimum value is higher. Values range from -0.285 (extreme problems on all dimensions) to 0.950 (for health states 11211 and 21111). Results have important implications for users of the EQ-5D-5L both in England and internationally. Quality-adjusted life year gains from interventions seeking to improve very poor health may be smaller using this value set and may previously have been overestimated. [ABSTRACT FROM AUTHOR]

Objectives Willingness-to-pay ( WTP) provides a broad assessment of well-being, capturing benefits beyond health. However, the validity of the approach has been questioned and the evidence relating to the sensitivity of WTP to changes in health status is mixed. Using menorrhagia (heavy menstrual bleeding) as a case study, this exploratory study assesses the sensitivity to scale of WTP to change in health status as measured by a condition-specific measure, MMAS, which includes both health and non-health benefits. The relationship between EQ-5D and change in health status is also assessed. Methods Baseline EQ-5D and MMAS values were collected from women taking part in a randomized controlled trial for pharmaceutical treatment of menorrhagia. Following treatment, these measures were administered along with a WTP exercise. The relationship between the measures was assessed using Spearman's correlation analysis, and the sensitivity to scale of WTP was measured by identifying differences in WTP alongside differences in MMAS and EQ5D values. Results Our exploratory findings indicated that WTP, and not EQ-5D, was significantly positively correlated with change in MMAS, providing some evidence for convergent validity. These findings suggest that WTP is capturing the non-health benefits within the MMAS measure. Mean WTP also increased with percentage improvements in MMAS, suggesting sensitivity to scale. Conclusion When compared to quality of life measured using the condition-specific MMAS measure, the convergent validity and sensitivity to scale of WTP is indicated. The findings suggest that WTP is more sensitive to change in MMAS, than with EQ-5D. [ABSTRACT FROM AUTHOR]

Rationale, aims and objectives Our aim was to evaluate the effectiveness of a Post-it® note to increase response rates and shorten response times to a 4-month postal follow-up questionnaire sent to participants taking part in the Collaborative Care in Screen-Positive Elders (CASPER) trials. Method Our trial was a two-arm randomized controlled trial comparing response rates to questionnaires with a printed Post-it® note (intervention) and without (control), nested in multi centred randomized controlled trials of older people with varying levels of depressive symptoms; the CASPER+ and CASPER Self Help for those At Risk of Depression (SHARD) trials. A total of 611 participants were eligible and randomized. The primary outcome was response rates, secondary outcomes were time to response and need for a reminder. Results Of 297 participants, 266 (89.6%) returned their 4-month questionnaire in the post-it note arm, compared with 282 of 314 participants (89.8%) in the control arm (OR = 0.97, 95% CI: 0.57, 1.65, P = 0.913). There were no statistically significant differences in time to respond or the need to be sent a reminder. Patients with a major depressive episode were more likely to return questionnaires with post-it notes ( P of interaction = .019). Conclusion There was no significant difference in response rates, time to response, or the need for a reminder between the intervention and control at 4-month follow up for older people with depressive symptoms. However, there was a significant interaction between the Post-it® note group and level of depression. [ABSTRACT FROM AUTHOR]

Objective: To evaluate the effectiveness of nurse-led telephone follow-up (TFU) for patients with stage-I endometrial cancer.Design: Multicentre, randomised, non-inferiority trial.Setting: Five centres in the North West of England.Sample: A cohort of 259 women treated for stage-I endometrial cancer attending hospital outpatient clinics for routine follow-up.Methods: Participants were randomly allocated to receive traditional hospital based follow-up (HFU) or nurse-led TFU.Main Outcome Measures: Primary outcomes were psychological morbidity (State Trait Anxiety Inventory, STAI-S) and patient satisfaction with the information provided. Secondary outcomes included patient satisfaction with service, quality of life, and time to detection of recurrence.Results: The STAI-S scores post-randomisation were similar between groups [mean (SD): TFU 33.0 (11.0); HFU 35.5 (13.0)]. The estimated between-group difference in STAI-S was 0.7 (95% confidence interval, 95% CI -1.9 to 3.3); the confidence interval lies above the non-inferiority limit (-3.5), indicating the non-inferiority of TFU. There was no significant difference between groups in reported satisfaction with information (odds ratio, OR 0.9; 95% CI 0.4-2.1; P = 0.83). Women in the HFU group were more likely to report being kept waiting for their appointment (P = 0.001), that they did not need any information (P = 0.003), and were less likely to report that the nurse knew about their particular case and situation (P = 0.005).Conclusions: The TFU provides an effective alternative to HFU for patients with stage-I endometrial cancer, with no reported physical or psychological detriment. Patient satisfaction with information was high, with similar levels between groups.Tweetable Abstract: ENDCAT trial shows effectiveness of nurse-led telephone follow-up for patients with stage-I endometrial cancer. [ABSTRACT FROM AUTHOR]

The invisibility of nursing work has been discussed in the international literature but not in relation to learning clinical skills. Evans and Guile's (Practice‐based education: Perspectives and strategies, Rotterdam: Sense, 2012) theory of recontextualisation is used to explore the ways in which invisible or unplanned and unrecognised learning takes place as newly qualified nurses learn to delegate to and supervise the work of the healthcare assistant. In the British context, delegation and supervision are thought of as skills which are learnt “on the job.” We suggest that learning “on‐the‐job” is the invisible construction of knowledge in clinical practice and that delegation is a particularly telling area of nursing practice which illustrates invisible learning. Using an ethnographic case study approach in three hospital sites in England from 2011 to 2014, we undertook participant observation, interviews with newly qualified nurses, ward managers and healthcare assistants. We discuss the invisible ways newly qualified nurses learn in the practice environment and present the invisible steps to learning which encompass the embodied, affective and social, as much as the cognitive components to learning. We argue that there is a need for greater understanding of the “invisible learning” which occurs as newly qualified nurses learn to delegate and supervise. [ABSTRACT FROM AUTHOR]

Aims Most people who quit smoking for a short term will return to smoking again in 12 months. We tested whether self-help booklets can reduce relapse in short-term quitters after receiving behavioural and pharmacological cessation treatment. Design A parallel-arm, pragmatic individually randomized controlled trial. Setting Smoking cessation clinics in England. Participants People who stopped smoking for 4 weeks after receiving cessation treatment in stop smoking clinics. Intervention Participants in the experimental group (n = 703) were mailed eight booklets, each of which taught readers how to resist urges to smoke. Participants in the control group (n = 704) received a leaflet currently used in practice. Measurements The primary outcome was prolonged, carbon monoxide-verified abstinence from months 4 to 12. The secondary outcomes included 7-day self#x02010;reported abstinence at 3 and 12 months. Mixed-effects logistic regression was used to estimate treatment effects and to investigate possible effect modifying variables. Findings There were no statistically significant differences between the groups in prolonged abstinence from months 4 to 12 (36.9% versus 38.6%; odds ratio 0.93, 95% confidence interval 0.75-1.16; P = 0.524). In addition, there were no significant differences between the groups in any secondary outcomes. However, people who reported knowing risky situations for relapse and using strategies to handle urges to smoke were less likely to relapse. Conclusions In people who stop smoking successfully with behavioural support, a comprehensive self-help educational programme to teach people skills to identify and respond to high-risk situations for return to smoking did not reduce relapse. [ABSTRACT FROM AUTHOR]

The article presents a study which aims to gather feedback from primary care patients on their experiences and perceptions of the care provided by nurse independent prescribers (NIPs) and pharmacist independent prescribers (PIPs). The researchers detail the study design using cross-sectional postal surveys on patients by NIPs or PIPs in England. It reveals that patients do not experience any difference in the quality and safety of care provided.

Background Adults with intellectual disabilities ( ID) experience a wide range of eating, drinking and/or swallowing ( EDS) problems, for which they receive diverse mealtime support interventions. Previous research has estimated that dysphagia (difficulty swallowing) affects 8% of all adults with ID and that 15% require some form of mealtime support. People with ID (whether they require mealtime support or not) also experience a greater burden of ill health and die younger than their peers in the general population with no ID. Methods Using an exploratory, population-based cohort study design, we set out to examine health-related outcomes in adults with ID who receive mealtime support for any eating, drinking or swallowing problem, by establishing the annual incidence of healthcare use, EDS-related ill health, and all-cause mortality. This study was conducted in two counties in the East of England. Results In 2009, 142 adults with mild to profound ID and a need for any type of mealtime support were recruited for a baseline survey. At follow-up 1 year later, 127 individuals were alive, eight had died and seven could not be contacted. Almost all participants had one or more consultations with a general practitioner ( GP) each year (85-95%) and, in the first year, 20% reportedly had one or more emergency hospitalizations. Although their annual number of GP visits was broadly comparable with that of the general population, one-fifth of this population's primary healthcare use was directly attributable to EDS-related ill health. Respiratory infections were the most common cause of morbidity, and the immediate cause of all eight deaths, while concerns about nutrition and dehydration were surprisingly minor. Our participants had a high annual incidence of death (5%) and, with a standardized mortality ratio of 267, their observed mortality was more than twice that expected in the general population of adults with ID (not selected because of mealtime support for EDS problems). Conclusions All Annual Health Checks now offered to adults with ID should include questions about respiratory infections and EDS functioning, in order to focus attention on EDS problems in this population. This has the potential to reduce life-threatening illness. [ABSTRACT FROM AUTHOR]

Aims The Randomized Injectable Opioid Treatment Trial ( RIOTT) compared supervised injectable heroin ( SIH) and supervised injectable methadone ( SIM) with optimized oral methadone ( OOM) ( ISRCTN0133807). Heroin addicts (previously unresponsive to treatment) made significant reductions in street heroin use at 6 months when treated with SIH. We now examine secondary outcomes. Design Multi-site randomized controlled trial ( RCT) comparing SIH versus OOM and SIM versus OOM. Setting Three supervised injectable opiate clinics in England. Participants Chronic refractory heroin addicts continuing to inject street heroin virtually daily despite oral substitution treatment ( n = 127), randomized to either SIH( n = 43), SIM( n = 42) or OOM( n = 42). All received high levels of medical and psychosocial support. Measurements Secondary outcomes: wider drug use, crime, health and social functioning at 6 months. Findings At 6 months, no significant differences were found between treatment groups in wider drug use (crack/cocaine, benzodiazepines, alcohol), physical and mental health ( SF-36) or social functioning. Within each treatment group, significant reductions were observed in crime [ SIH = odds ratio ( OR) 0.05; P < 0.001; SIM = OR 0.11; P = 0.002; OOM = OR 0.11; P = 0.003] and money spent per week on illicit drugs ( SIH = mean change £-289.43; P < 0.001; SIM = mean change £-183.41; P < 0.001; OOM = mean change £-162.80; P < 0.001), with SIH significantly more likely to have reduced money spent on illicit drugs versus OOM (mean difference £-92.04; P < 0.001). Significant improvements were seen in physical health for SIH and SIM ( SIH = mean change 3.97; P = 0.008; SIM = mean change 4.73; P = 0.002) and mental health for OOM (mean change 6.04; P = 0.013). Conclusions Supervised injectable heroin treatment and supervised injectable methadone treatment showed no clearly identified benefit over optimized oral methadone in terms of wider drug use, crime, physical and mental health within a 6-month period, despite reducing street heroin use to a greater extent. However, all interventions were associated with improvements in these outcomes. [ABSTRACT FROM AUTHOR]