Developing a best practice model for partnership practice between specialist palliative care and intellectual disability services: a mixed methods study

Background: The lack of access to good quality palliative care for people with intellectual disabilities is highlighted in the international literature. In response, more partnership practice in end-of-life care is proposed. 
Aim: This study aimed to develop a best practice model to guide and promote partnership practice between specialist palliative care and intellectual disability services. 
Design: A mixed methods research design involving two phases was used, underpinned by a conceptual model for partnership practice. 
Setting/participants: Phase 1 involved scoping end-of-life care to people with intellectual disability, based on self-completed questionnaires. In all, 47 of 66 (71.2%) services responded. In Phase 2, semi-structured interviews were undertaken with a purposive sample recruited of 30 health and social care professionals working in intellectual disability and palliative care services, who had provided palliative care to someone with intellectual disability. For both phases, data were collected from primary and secondary care in one region of the United Kingdom. 
Results: In Phase 1, examples of good practice were apparent. However, partnership practice was infrequent and unmet educational needs were identified. Four themes emerged from the interviews in Phase 2: challenges and issues in end-of-life care, sharing and learning, supporting and empowering and partnership in practice. 
Conclusion: Joint working and learning between intellectual disability and specialist palliative care were seen as key and fundamental. A framework for partnership practice between both services has been developed which could have international applicability and should be explored with other services in end-of-life care.

Scientific standards for human intervention trials evaluating health benefits of foods, and their application to infants, children and adolescents

Associations between the consumption of particular foods and health outcomes may be indicated by observational studies. However, intervention trials that evaluate the health benefits of foods provide the strongest evidence to support dietary recommendations for health. Thus, it is important that these trials are carried out safely, and to high scientific standards. Accepted standards for the reporting of the health benefits of pharmaceutical and other medical interventions have been provided by the Consolidated Standards of Reporting Trials (CONSORT) statement. However, there are no generally accepted standards for trials to evaluate the health benefits of foods. Trials with foods differ from medical trials in issues related to safety, ethics, research governance and practical implementation. Furthermore, these important issues can deter the conduct of both medical and nutrition trials in infants, children and adolescents. This paper provides standards for the planning, design, conduct, statistical analysis and interpretation of human intervention trials to evaluate the health benefits of foods that are based on the CONSORT guidelines, and outlines the key issues that need to be addressed in trials in participants in the paediatric age range.

An Exploration of Political Consciousness Amongst Final Year Nursing Students in Northern Ireland

Context and background
Historically nurses perceive politics and nursing as being at odds with the caring image, synonymous with nurses (Salvage, 1985). Furthermore the concept of the ‘politics of nursing’ lacks clear conceptual clarity (Hewison, 1994). This concept ranges across a continuum from political interest to participation or engagement (Rains et al, 2001). It is often argued political interest tends to be equated with knowledge/ involvement in health policy development and nurse education can foster political consciousness, through political socialization (Brown, 1996). But despite the World Health Organization (WHO, 2002) urging this involvement, nurses globally are largely absent from the political and policy making arena. What influences nurse’s political socialization and the development of a political consciousness is not clearly identified or known, although many commentators suggest the undergraduate educational environment, plays an important role (Hanley, 1987, Winter, 1991).     

AIM
The aim of this study was to explore third year nursing student’s perceptions of politics in nursing, in the context of Northern Ireland. A number of hypotheses were tested examining the relationship between age, prior educational attainment and political interest and attitudes.  

Research methodology
A cross sectional research design was used and the data was collected using a short anonymous self-completion web survey (Bryman, 2012). The sample was a convenience sample of one cohort of final year adult nursing students (n154) in one Northern Irish university, with a 42% response rate. Data was analyzed using SPSS.

Key findings and conclusions
The results revealed 55% of students were very/fairly interested in politics, with 6% reporting no interest in politics. 85% of students were registered to vote, but only 48% voted in the 2010 N Ireland Assembly election.   
Recommend inclusion of a unit of study incorporating innovative teaching methods related to politics and health related policy, in the undergraduate nursing programme.       

Is the shortened dental arch an underused treatment strategy in the Republic of Ireland?

OBJECTIVES: To determine the proportion of Republic of Ireland 35-44 and 65+ year-olds currently satisfying the criteria for a classic shortened dental arch (SDA) of 20 anterior teeth.

RESEARCH DESIGN: Secondary analysis of data collected in the 2000/02 epidemiological survey of the oral health of Irish adults.

CLINICAL SETTING: Participants underwent a clinical oral examination in health board dental clinics and completed a detailed interview pertaining to dental and general health.

PARTICIPANTS: The analysis is based on a random sample of adults, aged 35 to 44 years (n = 978), and 65 years and older (n = 714).

MAIN OUTCOME MEASURES: The SDA was measured as 20 teeth in the mouth in the positions normally described as from the left second premolar to the right second premolar in each arch.

RESULTS: Only one of the 35-44 year-olds and none of the 65+ year-olds had teeth in their mouths in positions normally described as a classic SDA. However, of the 35-44 year old age group only five patients who had at least a premolar dentition of 20 contiguous teeth had been provided with a removable denture compared to one patient from the 65+ years group.

CONCLUSIONS: Very few older patients in the Republic of Ireland have a SDA based on the measure used. However, very few have been provided with removable dentures where they already possess at least a premolar dentition of 20 contiguous teeth. Suggested reasons for this may include limitations of the data recorded, patient preferences and economic factors.

Glycemic targets in the second and third trimester of pregnancy for women with type 1 diabetes

OBJECTIVE: To assess the relationship between second and third trimester glycemic control and adverse outcomes in pregnant women with type 1 diabetes, as uncertainty exists about optimum glycemic targets.

RESEARCH DESIGN AND METHODS: Pregnancy outcomes were assessed prospectively in 725 women with type 1 diabetes from the Diabetes and Pre-eclampsia Intervention Trial. HbA1c (A1C) values at 26 and 34 weeks' gestation were categorized into five groups, the lowest, <6.0% (42 mmol/mol), being the reference. Average pre- and postprandial results from an eight-point capillary glucose profile the previous day were categorized into five groups, the lowest (preprandial <5.0 mmol/L and postprandial <6.0 mmol/L) being the reference.

RESULTS: An A1C of 6.0-6.4% (42-47 mmol/mol) at 26 weeks' gestation was associated with a significantly increased risk of large for gestational age (LGA) (odds ratio 1.7 [95% CI 1.0-3.0]) and an A1C of 6.5-6.9% (48-52 mmol/mol) with a significantly increased risk of preterm delivery (odds ratio 2.5 [95% CI 1.3-4.8]), pre-eclampsia (4.3 [1.7-10.8]), need for a neonatal glucose infusion (2.9 [1.5-5.6]), and a composite adverse outcome (3.2 [1.3-8.0]). These risks increased progressively with increasing A1C. Results were similar at 34 weeks' gestation. Glucose data showed less consistent trends, although the risk of a composite adverse outcome increased with preprandial glucose levels between 6.0 and 6.9 mmol/L at 34 weeks (3.3 [1.3-8.0]).

CONCLUSIONS: LGA increased significantly with an A1C ≥6.0 (42 mmol/mol) at 26 and 34 weeks' gestation and with other adverse outcomes with an A1C ≥6.5% (48 mmol/mol). The data suggest that there is clinical utility in regular measurement of A1C during pregnancy.

Emotional insecurity in the family and community and youth delinquency in Northern Ireland: A person-oriented analysis across five-waves

Background: Over one billion children are exposed worldwide to political violence and armed conflict. Currently, conclusions about bases for adjustment problems are qualified by limited longitudinal research from a process-oriented, social-ecological perspective. In this study, we examined a theoretically-based model for the impact of multiple levels of the social ecology (family, community) on adolescent delinquency. Specifically, this study explored the impact of children’s emotional insecurity about both the family and community on youth delinquency in Northern Ireland. Methods: In the context of a five-wave longitudinal research design, participants included 999 mother-child dyads in Belfast (482 boys, 517 girls), drawn from socially-deprived, ethnically-homogenous areas that had experienced political violence. Youth ranged in age from 10 to 20 and were 12.18 (SD = 1.82) years old on average at Time 1. Findings: The longitudinal analyses were conducted in hierarchical linear modeling (HLM), allowing for the modeling of inter-individual differences in intra-individual change. Intra-individual trajectories of emotional insecurity about the family related to children’s delinquency. Greater insecurity about the community worsened the impact of family conflict on youth’s insecurity about the family, consistent with the notion that youth’s insecurity about the community sensitizes them to exposure to family conflict in the home. Conclusions: The results suggest that ameliorating children’s insecurity about family and community in contexts of political violence is an important goal toward improving adolescents’ well-being, including reduced risk for delinquency.

Clinical trial designs for rare diseases: Studies developed and discussed by the International Rare Cancers Initiative

BACKGROUND: The past three decades have seen rapid improvements in the diagnosis and treatment of most cancers and the most important contributor has been research. Progress in rare cancers has been slower, not least because of the challenges of undertaking research.

SETTINGS: The International Rare Cancers Initiative (IRCI) is a partnership which aims to stimulate and facilitate the development of international clinical trials for patients with rare cancers. It is focused on interventional--usually randomized--clinical trials with the clear goal of improving outcomes for patients. The key challenges are organisational and methodological. A multi-disciplinary workshop to review the methods used in ICRI portfolio trials was held in Amsterdam in September 2013. Other as-yet unrealised methods were also discussed.

RESULTS: The IRCI trials are each presented to exemplify possible approaches to designing credible trials in rare cancers. Researchers may consider these for use in future trials and understand the choices made for each design.

INTERPRETATION: Trials can be designed using a wide array of possibilities. There is no 'one size fits all' solution. In order to make progress in the rare diseases, decisions to change practice will have to be based on less direct evidence from clinical trials than in more common diseases.

Designing for dementia : an assessment of the impact of the physical environment on wayfinding success for residents in long term care settings

It is acknowledged that one of the consequences of the ageing process is cognitive decline, which leads to an increase in the incidence of illnesses such as dementia. This has become ever more relevant due to the projected increase in the ageing demographic. Dementia affects visuo-spatial perception, causing difficulty with wayfinding, even during the early stages of the disease. The literature widely recognises the physical environment’s role in alleviating symptoms of dementia and improving quality of life for residents. It also identifies the lack of available housing options for older people with dementia and consequently the current stock is ill-equipped to provide adequate support.
Recent statistics indicate that 80% of those residing in nursing or residential care homes have some form of dementia or severe memory problems. The shift towards institutional care settings, the need for specialist support and care, places a greater impetus on the need for a person-centred approach to tackle issues related to wayfinding and dementia.
This thesis therefore aims to improve design for dementia in nursing and residential care settings in the context of Northern Ireland. This will be undertaken in order to provide a better understanding of how people with dementia experience the physical environment and to highlight features of the design that assist with wayfinding. Currently there are limited guidelines on design for dementia, meaning that many of these are theoretical, anecdotal and not definitive. Hence a greater verification to address the less recognised design issues is required. This is intended to ultimately improve quality of life, wellbeing, independence and uphold the dignity of people with dementia living in nursing or residential care homes.
The research design uses a mixed methods approach. A thorough preparation and consideration of ethical issues informed the methodology. The various facets were also trialled and piloted to identify any ethical, technological, methodological, data collection and analysis issues. The protocol was then amended to improve or resolve any of the aforementioned issues. Initially a questionnaire based on leading design recommendations was conducted with home managers. Semi-structured interviews were developed from this and conducted with staff and resident’s next of kin. An evidence-based approach was used to design a study which used ethnographic methods, including a wayfinding task. This followed a repeated measures design which would be used to actively engage residents with dementia in the research. Complementary to the wayfinding task, conversational and semi-structured interviews were used to promote dialogue and direct responses with the person with dementia. In addition to this, Space Syntax methodologies were used to examine the physical properties of the architectural layout. This was then cross-examined with interview responses and data from the wayfinding tasks.
A number of plan typologies were identified and were determined as synonymous with decision point types which needed to be made during the walks. The empirical work enabled the synthesis of environmental features which support wayfinding.
Results indicate that particular environmental features are associated with improved performance on the wayfinding tasks. By enhancing design for dementia, through identifying the attributes, challenges with wayfinding may be overcome and the benefits of the physical environment can be seen to promote wellbeing.
The implications of this work mean that the environmental features which have been highlighted from the project can be used to inform guidelines, thus adding to existing knowledge. Future work would involve the dissemination of this information and the potential for it to be made into design standards or regulations which champion design for dementia. These would increase awareness for designers and stakeholders undertaking new projects, extensions or refurbishments.
A person-centred, evidence-based design was emphasised throughout the project which guaranteed an in-depth study. There were limitations due to the available resources, time and funding. Future research would involve testing the identified environmental features within a specific environment to enable measured observation of improvements.

Opening eyes to opera: the process of translation for blind and partially-sighted audiences

In today’s rapidly developing digital age and increasingly socially-aware society, the notion of media accessibility is evolving in response to shifting audience expectations. Performing arts and media, such as opera, are called upon to include all audiences, and related audiovisual translation methods are progressing in this direction. These comprise audio description and touch tours for the blind and partially-sighted, two relatively new translation modalities which are consumer-oriented and require an original research design for the analysis of the translation processes involved. This research design follows two fundamental principles: (1) audience reception studies should be an integral part of the investigation into the translation process; and (2) the translation process is regarded as a network. Therefore, this paper explores the unique translation processes of audio description and touch tours within the context of live opera from the perspective of actor-network theory and by providing an overview of a reception project. Through discussion of the methodology and findings, this paper addresses the question of the impact of audience reception on the translation process.

Opening Eyes to Opera: the process of translation for blind and partially-sighted audiences

In today’s rapidly developing digital age and increasingly socially-aware society, the notion of media accessibility is evolving in response to shifting audience expectations. Performing arts and media, such as opera, are called upon to include all audiences, and related audiovisual translation methods are progressing in this direction. These comprise audio description and touch tours for the blind and partially-sighted, two relatively new translation modalities which are consumer-oriented and require an original research design for the analysis of the translation processes involved. This research design follows two fundamental principles: (1) audience reception studies should be an integral part of the investigation into the translation process; and (2) the translation process is regarded as a network. Therefore, this chapter explores the unique translation processes of audio description and touch tours within the context of live opera from the perspective of actor-network theory and by providing an overview of a reception project. Through discussion of the methodology and findings, this chapter addresses the question of the impact of audience reception on the translation process.

Challenges to undertaking randomised trials with looked after children in social care settings

Background: Randomised controlled trials (RCTs) are widely viewed as the gold standard for assessing effectiveness in health research; however many researchers and practitioners believe that RCTs are inappropriate and un-doable in social care settings, particularly in relation to looked after children. The aim of this article is to describe the challenges faced in conducting a pilot study and phase II RCT of a peer mentoring intervention to reduce teenage pregnancy in looked after children in a social care setting.

Methods: Interviews were undertaken with social care professionals and looked after children, and a survey conducted with looked after children, to establish the feasibility and acceptability of the intervention and research design.

Results: Barriers to recruitment and in managing the intervention were identified, including social workers acting as informal gatekeepers; social workers concerns and misconceptions about the recruitment criteria and the need for and purpose of randomisation; resource limitations, which made it difficult to prioritise research over other demands on their time and difficulties in engaging and retaining looked after children in the study.

Conclusions: The relative absence of a research infrastructure and culture in social care and the lack of research support funding available for social care agencies, compared to health organisations, has implications for increasing evidence-based practice in social care settings, particularly in this very vulnerable group of young people.

Untreated Mild Hyperglycemia During Pregnancy and Anthropometric Measures of Obesity in Offspring at Age 5-7 Years

OBJECTIVE: Obesity in the offspring of women with hyperglycemia during pregnancy has been reported, but the results are conflicting. This study examined the association of hyperglycemia during pregnancy and anthropometry in 5- to 7-year-old offspring whose mothers participated in the Hyperglycemia and Adverse Pregnancy Outcomes (HAPO) Study at the Belfast Centre.

RESEARCH DESIGN AND METHODS: Women in the HAPO study underwent a 75-g oral glucose tolerance test (OGTT) at approximately 28 weeks of gestation. Mothers and caregivers remained blinded to the results unless the fasting plasma glucose (FPG) concentration was >5.8 mmol/L or the 2-h plasma glucose (2hPG) concentration was >11.1 mmol/L. Offspring weight, height, and skin-fold thicknesses (triceps, subscapular, and suprailiac) were measured at age 5-7 years. Overweight, obesity, and extreme obesity were defined as a BMI z score ≥85th, ≥95th, and ≥99th percentile, respectively, based on the 1990 British Growth Standard.

RESULTS: Belfast HAPO offspring (n = 1,320, 82%) aged 5-7 years attended for follow-up. Using multiple regression, maternal FPG, 1h PG, and 2hPG did not show any relation to offspring BMI z score or offspring skin-fold sum independent of maternal BMI at OGTT and offspring birth weight z score. This lack of association with maternal glycemia persisted with the offspring BMI z score expressed as ≥85th, ≥95th, or 99th percentile, and the sum of skin folds expressed as ≥90th percentile specific for sex. The initially significant relation between FPG and all offspring adiposity measures was explained by maternal BMI at the OGTT.

CONCLUSIONS: After adjustment for maternal BMI at the OGTT, higher maternal FPG concentration during pregnancy (short of diabetes) is no longer a risk factor for obesity, as reflected by BMI and the sum of skin folds in offspring aged 5-7 years.

Quality of reporting of dental survival analyses

To explore the quality of reporting (writing and graphics) of articles that used time-to-event analyses to report dental treatment outcomes. A systematic search of the top 50 dental journals in 2008 produced the sample of articles for this analysis. Articles reporting treatment outcomes with (n = 95) and without (n = 91) time-to-event statistics were reviewed. Survival descriptive words used in the two groups were analysed (Pearson's chi-square). The quality of life tables, survival curves and time-to-event statistics were assessed (Kappa analysed agreement) and explored. Words describing dental outcomes 'over time' were more common in time-to-event compared with control articles (77%, 3%, P < 0.001). Non-specific use of 'rate' was common across both groups. Life tables and survival curves were used by 39% and 48% of the time-to-event articles, with at least one used by 82%. Construction quality was poor: 21% of life tables and 28% of survival curves achieved an acceptable standard. Time-to-event statistical reporting was poor: 3% achieved a high and 59% achieved an acceptable standard. The survival statistic, summary figure and standard error were reported in 76%, 95% and 20% of time-to-event articles. Individual statistical terms and graphic aids were common within and unique to time-to-event articles. Unfortunately, important details were regularly omitted from statistical descriptions and survival figures making the overall quality poor. It is likely this will mean such articles will be incorrectly indexed in databases, missed by searchers and unable to be understood completely if identified.

Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015: elaboration and explanation

Protocols of systematic reviews and meta-analyses allow for planning and documentation of review methods, act as a guard against arbitrary decision making during review conduct, enable readers to assess for the presence of selective reporting against completed reviews, and, when made publicly available, reduce duplication of efforts and potentially prompt collaboration. Evidence documenting the existence of selective reporting and excessive duplication of reviews on the same or similar topics is accumulating and many calls have been made in support of the documentation and public availability of review protocols. Several efforts have emerged in recent years to rectify these problems, including development of an international register for prospective reviews (PROSPERO) and launch of the first open access journal dedicated to the exclusive publication of systematic review products, including protocols (BioMed Central's Systematic Reviews). Furthering these efforts and building on the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses) guidelines, an international group of experts has created a guideline to improve the transparency, accuracy, completeness, and frequency of documented systematic review and meta-analysis protocols--PRISMA-P (for protocols) 2015. The PRISMA-P checklist contains 17 items considered to be essential and minimum components of a systematic review or meta-analysis protocol.This PRISMA-P 2015 Explanation and Elaboration paper provides readers with a full understanding of and evidence about the necessity of each item as well as a model example from an existing published protocol. This paper should be read together with the PRISMA-P 2015 statement. Systematic review authors and assessors are strongly encouraged to make use of PRISMA-P when drafting and appraising review protocols.

Perceptions of high involvement work practices and burnout: investigating the mediating role of procedural justice and role overload and the moderating role of colleague support

Purpose
The purpose of this paper is to investigate the impact of employees’ perceptions of high involvement work practices (HIWPs) on burnout (emotional exhaustion and depersonalisation) via the mediating role of role overload and procedural justice. Further, perceived colleague support was hypothesised to moderate the effects of role overload and procedural justice on these outcomes.

Design/Methodology
The study was conducted on a random sample of unionised registered nurses (RNs) working in the Canadian public health care sector, stratified by mission and size of the institution to ensure representativeness. Of the 6546 nurses solicited, 2174 returned a completed questionnaire, resulting in a response rate of 33.2%. To test our hypotheses we conducted structural equation modelling (SEM) in Mplus version 6.0 (Muthen and Muthen, 1998 – 2010) with Maximum Likelihood (ML) estimation.

Results
The results showed that procedural justice and role overload fully mediated the influence of HIWPs on burnout. Moreover, colleague support moderated the effects of procedural justice and role overload on emotional exhaustion but not depersonalisation.

Limitations
The study used a cross-sectional research design and is conducted among one occupational group (i.e. nurses).

Research/Practical Implications
The findings question the dark side of HRM in the health care context. They also contribute to the lack of theoretical and empirical work dedicated to understanding the ‘black box’ problem (Castanheira and Chambel, 2010).

Originality/Value
The study employs a well-known theoretical perspective from the occupational health psychology literature to the HR field in order to contribute to the lack of theorising in the HR-well-being link.