Seldom Heard Voices - Empowering Maternity Services in Wales.

Seldom-heard groups refer to individuals whose voices are often marginalised, underrepresented, or not adequately considered in the digital design process. This case study aims to demonstrate the benefits of taking a user-centred design (UCD) approach to implementing a digital solution for Maternity Services in Wales. Semi-structured interviews were conducted to understand the needs of women and birthing people from seldom-heard groups. The research insights were used to inform the design of a service pattern that could be delivered before and after each maternity appointment. The research shows opportunities to improve the experience for women and birthing people and reduce their anxieties by creating a reliable, accessible digital maternity record that will empower them to make evidence-based decisions. By taking a user-centred design approach and centering the unique needs of those facing the greatest health disparities, Maternity Services' digital transformation aims to positively impact the health and well-being of women and birthing people in Wales.

Defining digital nursing.

BACKGROUND: The use of technology in health care, including nursing, is growing, owing in part to the COVID-19 pandemic and in response to national policy. AIMS: To investigate nurses' perceptions of digital nursing (DN). METHODS: Community and primary care nurses from across Wales were recruited (n=249) through a survey comprising open and closed questions. This was supplemented with semistructured interviews (n=25). Thematic analysis was used to analyse qualitative data. FINDINGS: Nurses had a broad range of perspectives on what DN meant, with four main themes being identified: access; impact on care; technology; and digital future. The positive impacts of DN on ways of working and patient outcomes were supported by answers to closed survey questions. CONCLUSION: Many nurses understand the value of digital tools within nursing and are clear about their benefits for patients, nurses and multiprofessional teams. However, there is a need for a clear definition and increased awareness of DN.

An observational investigation of the faical microbiota and metabonome of gastrostomy fed children, on blended and formula diets.

Gastrostomy fed children traditionally have a Formulae diet (FD), which fulfills nutritional requirements; however, many families are adopting Blended diets (BD), which are what the whole family would eat. We undertook an observational investigation of the colonic microbiota and metabonome in a small group of gastrostomy fed children, who were either on an FD or BD, and compared, where possible to their siblings (17 FD, 28 BD, 19 HS). There was no increase in complications in tube blockage or infection rates, but a significant improvement in the prevalence of bowel problems, a reduction in medication and an increase in quality of life. Metataxonomic analysis showed that the FD group was significantly different to the Sibling group, and that families did not cluster together. Whole sample metabonomics showed no differences between groups; however, univariate analysis of biologically important metabolites did differ. Changing to a BD resulted in no increase in complications or risks, but improved the overall quality of life for the children and families.

Using Participatory and Creative Methods to Research Gender-Based Violence in the Global South and With Indigenous Communities: Findings From a Scoping Review.

This review provides a synthesis of existing research on best practice recommendations for the use of participatory and creative methods to research gender-based violence in the Global South. Following a five-stage scoping review process, 44 papers, which each related to at least two of the three parts of the topic, were selected for inclusion. A frequency table was compiled to identify the elements of best practice, which were most common across the literature. Qualitative content analysis was then used to group these elements into inductive themes. An overarching theme of safety was identified, along with four broad and intersecting domains underpinning ethical research approaches in this area: contextual, reflexive, relational, and transformative. The validity of these themes was confirmed through consultation with partners, who also emphasized the importance of a survivor-centered approach. The aims, methods, barriers, evidence for practice, and research recommendations (AMBER) framework was developed for this project as an innovative tool for analyzing the data collected and drawing out the relevance for research practice. The framework draws out the aims, methods, and barriers involved in participatory research in this context and sets out best practice recommendations and directions for future research in the following areas: (1) ensuring safety of participants and researchers, (2) redressing power inequalities within the research process, (3) embedding locally responsive ethical frameworks, and (4) understanding cultural context and respecting cultural norms.

Towards Ethical International Research Partnerships in Gender-Based Violence Research: Insights From Research Partners in Kenya.

Research with survivors of gender-based violence in low- and middle-income countries is important to improve understanding of experiences of violence and the policies that can help combat it. But this research also implies risks for survivors, such as re-traumatization, safety concerns, and feelings of exploitation. These risks are magnified if research is undertaken by researchers from high-income countries, whose positionality produces power inequalities affecting both participants and research partners. This article describes the ethical challenges of international gender-based violence research from the perspective of Kenyan researchers and organizations and identifies recommendations about how to prevent them.

Using group concept mapping to explore the complexities of managing children's care.

BACKGROUND: Children whose assessed health needs cannot be met by statutory and universal services may require bespoke packages of continuing care. A project management group was set up to design a study that would explore the complexities for a children's community nurse (CCN) of managing such packages. METHODOLOGY: Group concept mapping (GCM), a mixed quantitative/qualitative participant-centred methodology, was used to obtain consensus from 20 CCNs about the complexities inherent in managing such packages and to develop a concept map that illustrated the emerging conceptual framework. DISCUSSION: The participants' ideas were written as statements and analysed. Core analysis of a square symmetrical matrix through multidimensional scaling and hierarchical cluster analysis was undertaken to produce a set of maps and reports. The final concept map was interpreted. It contained 99 statements organised into five conceptual clusters: 'education and training' (17 statements), 'risk and safety' (15 statements), 'continuing care process' (17 statements), 'relationships and boundaries' (22 statements) and 'working with families' (28 statements). CONCLUSION: CCNs used GCM to explore their roles and responsibilities when managing children's continuing care. Their resulting ideas were developed into a five-cluster conceptual framework that illustrated their views about the complexities of managing such care. IMPLICATIONS FOR PRACTICE: The emergent conceptual framework enables CCNs to explore their practice in relation to managing packages of care. Additionally, the framework will be used to design a CCN workforce planning instrument that will be useful to measure complexity in CCN caseloads. The GCM methodology could be used by other nursing teams who wish to develop their practice.

Preliminary Analysis From the Craniofacial Collaboration United Kingdom Developmental Outcomes in Children With Sagittal Synostosis.

The Craniofacial Collaboration United Kingdom (CC-UK) was established across the 4 Highly Specialized Craniofacial Centres (HSCCs) in the UK in 2015. This is the first wave of data to be analyzed, looking at 3-year-old children with sagittal synostosis who have had primary corrective surgery. This is a comprehensive, homogenous dataset, looking at parental measures of development and behavior. The results indicate that the majority of children are rated by their parents as falling within one standard deviation of the mean for both developmental and behavioral measures. However, there was a trend across the age groups within the sample which, although not statistically significant, indicates that more developmental difficulties may become apparent as children get older. Behavior was rated as more problematic, and the areas of greatest parental concern were Conduct (challenging or confrontational behavior) and Hyperactivity domains, where 24% of children were rated as within the clinically significant range. Although the majority of children were rated as falling within the average range, the difference in the mean between the sagittal and the normative group was significant in 5 of the 6 behavioral domains. Further research is required to examine whether these findings are stable over time and to look at the mechanism which might be driving these changes. It is anticipated that future CC-UK analysis will elucidate this more clearly.

Reply to Comment on Maani Hessari, N.; van Schalkwyk, M.C.; Thomas, S.; Petticrew, M. Alcohol Industry CSR Organisations: What Can Their Twitter Activity Tell Us about Their Independence and Their Priorities? A Comparative Analysis. Int. J. Environ. Res. Public Health 2019, 16, 892.

We are grateful for the opportunity to respond to the letter from the DrinkAware medical advisory panel [...].

Alcohol Industry CSR Organisations: What Can Their Twitter Activity Tell Us about Their Independence and Their Priorities? A Comparative Analysis.

There are concerns about the accuracy of the health information provided by alcohol industry (AI)-funded organisations and about their independence. We conducted a content analysis of the health information disseminated by AI-funded organisations through Twitter, compared with non-AI-funded charities, to assess whether their messages align with industry and/or public health objectives. We compared all tweets from 2016 from Drinkaware (UK); Drinkaware.ie (Ireland); and DrinkWise (Australia), to non-AI-funded charities Alcohol Concern (UK), Alcohol Action Ireland, and FARE (Australia). Industry-funded bodies were significantly less likely to tweet about alcohol marketing, advertising and sponsorship; alcohol pricing; and physical health harms, including cancers, heart disease and pregnancy. They were significantly more likely to tweet about behavioural aspects of drinking and less likely to mention cancer risk; particularly breast cancer. These findings are consistent with previous evidence that the purpose of such bodies is the protection of the alcohol market, and of the alcohol industry's reputation. Their messaging strongly aligns with AI corporate social responsibility goals. The focus away from health harms, particularly cancer, is also consistent with previous evidence. The evidence does not support claims by these alcohol-industry-funded bodies about their independence from industry.

Introduction to the Craniofacial Collaboration UK: A Developmental Screening Protocol at the United Kingdom's Four Highly Specialized Craniofacial Centers.

The clinical psychologists at the 4 highly specialized craniofacial centers in the United Kingdom have developed a systematic, developmental screening protocol, called the Craniofacial Collaboration UK (CC-UK). Previous systematic reviews of the literature into the developmental sequelae of single-suture craniosynostosis have identified a number of methodological flaws which the CC-UK seeks to avoid. This study presents an introduction to the rationale for its development, as well as the methodology of the CC-UK.

Updated meta-review of evidence on support for carers.

Objective To update a 2010 meta-review of systematic reviews of effective interventions to support carers of ill, disabled, or older adults. In this article, we report the most promising interventions based on the best available evidence. Methods Rapid meta-review of systematic reviews published from January 2009 to 2016. Results Sixty-one systematic reviews were included (27 high quality, 25 medium quality, and nine low quality). The quality of reviews has improved since the original review, but primary studies remain limited in quality and quantity. Fourteen high quality reviews focused on carers of people with dementia, four on carers of those with cancer, four on carers of people with stroke, three on carers of those at the end of life with various conditions, and two on carers of people with mental health problems. Multicomponent interventions featured prominently, emphasizing psychosocial or psychoeducational content, education and training. Improved outcomes for carers were reported for mental health, burden and stress, and wellbeing or quality of life. Negative effects were reported in reviews of respite care. As with earlier work, we found little robust evidence on the cost-effectiveness of reviewed interventions. Conclusions There is no 'one size fits all' intervention to support carers. There is potential for effective support in specific groups of carers, such as shared learning, cognitive reframing, meditation, and computer-delivered psychosocial support for carers of people with dementia. For carers of people with cancer, effective support may include psychosocial interventions, art therapy, and counselling. Carers of people with stroke may also benefit from counselling. More good quality, theory-based, primary research is needed.

Multi-agency practice for developing a blended diet for children fed via gastrostomy.

The administration of a blended diet via a gastrostomy tube to children with complex needs is an evolving area of practice. Healthcare professionals must provide guidance, promote best practice and optimise patient safety where patients and families choose a blended diet in preference to the prescribed commercial feed. The Aneurin Bevan Health University Health Board in Newport, Wales, took a collaborative approach, by working with parents as equal partners, to enable a child with complex needs to receive a blended diet at school. The development of a protocol and risk-assessed approach enabled the delivery of bespoke flexible care that met the holistic needs of the child and family and improved the child's quality of life. The initiative also led to positive outcomes for the school and wider community.

Supporting children's nurses through Nursing and Midwifery Council revalidation.

In April 2016 the Nursing and Midwifery Council introduced revalidation for all nurses and midwives. It was designed to demonstrate a registrant's ability to practise safely and effectively throughout their career and thereby improve patient and public protection. Children's nurses should be aware of their renewal (revalidation) date to prepare their portfolio in good time. The portfolio must include evidence of 450 hours of practice, 35 hours of continuing professional development, five examples of feedback on practice and five written reflective accounts. Revalidation was tested in 19 pilot sites across the UK including Aneurin Bevan University Health Board (ABUHB) - the overall experience of the children's nurses from ABUHB who participated in the pilot was positive. Children's nurses have been supported in revalidation through learning from shared examples of portfolio entries. Advice from ABUHB pilot participants to children's nurses includes getting organised, recording information regularly in their portfolio and the reassurance that revalidation is not difficult.

E-cigarettes and equity: a systematic review of differences in awareness and use between sociodemographic groups.

OBJECTIVE: To assess whether electronic cigarette (e-cigarette) awareness, 'ever use' and current use vary significantly between different sociodemographic groups. DESIGN: Systematic review. DATA SOURCES: Published and unpublished reports identified by searching seven electronic databases (PubMed, MEDLINE, Web of Science, EMBASE, Global Health, PsycINFO, CINAHL Plus) and grey literature sources. STUDY SELECTION: Systematic search for and appraisal of cross-sectional or longitudinal studies that assessed e-cigarette awareness, 'ever use' or current use, and included subgroup analysis of 1 or more PROGRESS Plus sociodemographic groups. No geographical or time restrictions imposed. Assessment by multiple reviewers, with 17% of full articles screened meeting the selection criteria. DATA EXTRACTION: Data extracted and checked by multiple reviewers, with quality assessed using an adapted tool developed by the Joanna Briggs Institute. DATA SYNTHESIS: Results of narrative synthesis suggest broadly that awareness, 'ever use' and current use of e-cigarettes may be particularly prevalent among older adolescents and younger adults, males, people of white ethnicity and-particularly in the case of awareness and 'ever use'-those of intermediate or high levels of education. In some cases, results also varied within and between countries. CONCLUSIONS: E-cigarette awareness, 'ever use' and current use appear to be patterned by a number of sociodemographic factors which vary between different countries and subnational localities. Care will therefore be required to ensure neither the potential benefits nor the potential risks of e-cigarettes exacerbate existing health inequalities.

Meta-analysis, complexity, and heterogeneity: a qualitative interview study of researchers' methodological values and practices.

BACKGROUND: Complex or heterogeneous data pose challenges for systematic review and meta-analysis. In recent years, a number of new methods have been developed to meet these challenges. This qualitative interview study aimed to understand researchers' understanding of complexity and heterogeneity and the factors which may influence the choices researchers make in synthesising complex data. METHODS: We conducted interviews with a purposive sample of researchers (N = 19) working in systematic review or meta-analysis across a range of disciplines. We analysed data thematically using a framework approach. RESULTS: Participants reported using a broader range of methods and data types in complex reviews than in traditional reviews. A range of techniques are used to explore heterogeneity, but there is some debate about their validity, particularly when applied post hoc. CONCLUSIONS: Technical considerations of how to synthesise complex evidence cannot be isolated from questions of the goals and contexts of research. However, decisions about how to analyse data appear to be made in a largely informal way, drawing on tacit expertise, and their relation to these broader questions remains unclear.

Children's nurses' experiences of a revalidation pilot study.

All UK nurses and midwives will need to follow the revalidation process to renew their registration with the Nursing and Midwifery Council (NMC) and demonstrate that they practise safely and effectively. The system is designed to help nurses and midwives develop professionally throughout their careers, as well as ensuring public confidence in the professions. Aneurin Bevan University Health Board (ABUHB) in South Wales was one of 19 NMC revalidation pilot sites. This involved nurses and midwives, who were due to complete their self-declaration between January 1 and September 30 2015, testing the revalidation processes. The aim of the article is to describe the experience of three paediatric nurses who participated in the pilot.

Views of children, young people and families: the 15 steps challenge.

There is a growing emphasis on involving service users in improving service delivery, accelerated by the inquiry into care failings at Mid Staffordshire NHS Foundation Trust. The 15 Steps Challenge was originally developed by the NHS Institute for Innovation and Improvement as a tool to help healthcare professionals, service users and others to work together to improve the patient experience. The 15 Steps Challenge involves a ward 'walkaround' to see the ward through the eyes of a child or young person and a parent or carer. This article explores the emphasis that is placed on user involvement in the context of children's nursing, and shares the experience of planning and evaluating the introduction of the 15 Steps Challenge in an acute children's ward in a busy district general hospital.

Developing empirically supported theories of change for housing investment and health.

The assumption that improving housing conditions can lead to improved health may seem a self-evident hypothesis. Yet evidence from intervention studies suggests small or unclear health improvements, indicating that further thought is required to refine this hypothesis. Articulation of a theory can help avoid a black box approach to research and practice and has been advocated as especially valuable for those evaluating complex social interventions like housing. This paper presents a preliminary theory of housing improvement and health based on a systematic review conducted by the authors. Following extraction of health outcomes, data on all socio-economic impacts were extracted by two independent reviewers from both qualitative and quantitative studies. Health and socio-economic outcome data from the better quality studies (n = 23/34) were mapped onto a one page logic models by two independent reviewers and a final model reflecting reviewer agreement was prepared. Where there was supporting evidence of links between outcomes these were indicated in the model. Two models of specific improvements (warmth & energy efficiency; and housing led renewal), and a final overall model were prepared. The models provide a visual map of the best available evidence on the health and socio-economic impacts of housing improvement. The use of a logic model design helps to elucidate the possible pathways between housing improvement and health and as such might be described as an empirically based theory. Changes in housing factors were linked to changes in socio-economic determinants of health. This points to the potential for longer term health impacts which could not be detected within the lifespan of the evaluations. The developed theories are limited by the available data and need to be tested and refined. However, in addition to providing one page summaries for evidence users, the theory may usefully inform future research on housing and health.

Treatments for macular oedema following central retinal vein occlusion: systematic review.

OBJECTIVES: To review systematically the randomised controlled trial (RCT) evidence for treatment of macular oedema due to central retinal vein occlusion (CRVO). DATA SOURCES: MEDLINE, EMBASE, CDSR, DARE, HTA, NHSEED, CENTRAL and meeting abstracts (January 2005 to March 2013). STUDY ELIGIBILITY CRITERIA, PARTICIPANTS AND INTERVENTIONS: RCTs with at least 12 months of follow-up assessing pharmacological treatments for CRVO were included with no language restrictions. STUDY APPRAISAL AND SYNTHESIS METHODS: 2 authors screened titles and abstracts and conducted data extracted and Cochrane risk of bias assessment. Meta-analysis was not possible due to lack of comparable studies. RESULTS: 8 studies (35 articles, 1714 eyes) were included, assessing aflibercept (n=2), triamcinolone (n=2), bevacizumab (n=1), pegaptanib (n=1), dexamethasone (n=1) and ranibizumab (n=1). In general, bevacizumab, ranibizumab, aflibercept and triamcinolone resulted in clinically significant increases in the proportion of participants with an improvement in visual acuity of ≥15 letters, with 40-60% gaining ≥15 letters on active drugs, compared to 12-28% with sham. Results for pegaptanib and dexamethasone were mixed. Steroids were associated with cataract formation and increased intraocular pressure. No overall increase in adverse events was found with bevacizumab, ranibizumab, aflibercept or pegaptanib compared with control. Quality of life was poorly reported. All studies had a low or unclear risk of bias. LIMITATIONS: All studies evaluated a relatively short primary follow-up (1 year or less). Most had an unmasked extension phase. There was no head-to-head evidence. The majority of participants included had non-ischaemic CRVO. CONCLUSIONS AND IMPLICATIONS OF KEY FINDINGS: Bevacizumab, ranibizumab, aflibercept and triamcinolone appear to be effective in treating macular oedema secondary to CRVO. Long-term data on effectiveness and safety are needed. Head-to-head trials and research to identify 'responders' is needed to help clinicians make the right choices for their patients. Research aimed to improve sight in people with ischaemic CRVO is required.

The effect direction plot: visual display of non-standardised effects across multiple outcome domains.

Visual display of reported impacts is a valuable aid to both reviewers and readers of systematic reviews. Forest plots are routinely prepared to report standardised effect sizes, but where standardised effect sizes are not available for all included studies a forest plot may misrepresent the available evidence. Tabulated data summaries to accompany the narrative synthesis can be lengthy and inaccessible. Moreover, the link between the data and the synthesis conclusions may be opaque. This paper details the preparation of visual summaries of effect direction for multiple outcomes across 29 quantitative studies of the health impacts of housing improvement. A one page summary of reported health outcomes was prepared to accompany a 10 000-word narrative synthesis. The one page summary included details of study design, internal validity, sample size, time of follow-up, as well as changes in intermediate outcomes, for example, housing condition. This approach to visually summarising complex data can aid the reviewer in cross-study analysis and improve accessibility and transparency of the narrative synthesis where standardised effect sizes are not available. Copyright © 2012 John Wiley & Sons, Ltd.