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Despite long histories of traditional food security, Indigenous peoples globally are disproportionately exposed to food insecurity. Addressing this imbalance must be a partnership led by Indigenous peoples in accordance with the UN Declaration of the Rights of Indigenous Peoples. We report the co-design process and resulting design of a food security research project in remote Australia and examine how the co-design process considered Indigenous peoples’ ways of knowing, being, and doing using the CREATE Tool. Informed by the Research for Impact Tool, together Aboriginal Community Controlled Health Organisation staff, Indigenous and non-Indigenous public health researchers designed the project from 2018–2019, over a series of workshops and through the establishment of research advisory groups. The resulting Remote Food Security Project includes two phases. Phase 1 determines the impact of a healthy food price discount strategy on the diet quality of women and children, and the experience of food (in)security in remote communities in Australia. In Phase 2, community members propose solutions to improve food security and develop a translation plan. Examination with the CREATE Tool showed that employing a co-design process guided by a best practice tool has resulted in a research design that responds to calls for food security in remote Indigenous communities in Australia. The design takes a strengths-based approach consistent with a human rights, social justice, and broader empowerment agenda. Trial registration: The trial included in Phase 1 of this project has been registered with Australian New Zealand Clinical Trials Registry: ACTRN12621000640808.

Aim\udTo evaluate the effects of a novel, immersive digital story intervention on empathy.\ud\udDesign\udA randomized trial with three phases.\ud\udResults\udA total of 238 2nd year nursing students were recruited between May 2018 and December 2019. At baseline, no significant differences in empathy between the groups were found (p = .760). However, at post-test, empathy was significantly higher in the intervention group (M: 118.76, SD: 10.65) than it was in the control group (M: 114.60, SD: 15.40) (p = .012). At follow-up, there were no significant differences in empathy between the groups (p = .364).\ud\udConclusion\udThe intervention resulted in an immediate increase in empathy in nursing students. However, further development of effective intervention delivery modes and fundamental redesign of the intervention itself would be needed to sustain this improvement over the long term.

Background Working effectively with Aboriginal and Torres Strait Islander people is important for maximising the effectiveness of a health care interaction between and Aboriginal and Torres Strait Islander patients and a health professional. This paper presents a framework to guide health professional practice in Aboriginal and Torres Strait Islander health. Methods This qualitative study was based in a social constructionist epistemology and was guided by a critical social research methodology. Two methods were employed: interviews with Aboriginal health workers and allied health professionals about their experiences of working together in Aboriginal health, and an auto-ethnography conducted by the researcher, a non-Aboriginal dietitian and researcher who worked closely with two Aboriginal communities while undertaking this research. Results Interviews were conducted with 44 allied health professionals and Aboriginal health workers in 2010. Critical Social research, which involves the deconstruction and reconstruction of data, was used to analyse data and guided the evolution of themes. Strategies that were identified as important to guide practice when working respectfully in Aboriginal health included: Aboriginal and non-Aboriginal people working with Aboriginal health workers, using appropriate processes, demonstrating commitment to building relationships, relinquishing control, having an awareness of Aboriginal history, communication, commitment, flexibility, humility, honesty, and persistence. Reciprocity and reflection/reflexivity were found to be cornerstone strategies from which many other strategies naturally followed. Strategies were grouped into three categories: approach, skills and personal attributes which led to development of the Framework. Conclusions The approach, skills and personal attributes of health professionals are important when working in Aboriginal health. The strategies identified in each category provide a Framework for all health professionals to use when working with Aboriginal and Torres Strait Islander people.

Purpose Nurse leaders driving strategic integration of genomics across nursing need tools and resources to evaluate their environment, guide strategies to address deficits, and benchmark progress. We describe the development and pilot testing of a self-assessment maturity matrix (MM) that enables users to benchmark the current state of nursing genomic competency and integration for their country or nursing group; guides the development of a strategic course for improvement and implementation; and assesses change over time. Design Mixed-methods participatory research and self-assessment. Methods During a 3-day workshop involving nursing experts in health care and genomics, a genomic integration MM grid was built by consensus using iterative participatory methods. Data were analyzed using descriptive techniques. This work built on an online survey involving the same participants to identify the critical elements needed for "effective nursing which promotes health outcomes globally through genomics." Findings Experts from 19 countries across six continents and seven organizations participated in item development. The Assessment of Strategic Integration of Genomics across Nursing (ASIGN) MM incorporates 55 outcome-focused items serving as subscales for six critical success factors (CSFs): education and workforce; effective nursing practice; infrastructure and resources; collaboration and communication; public/patient involvement; policy and leadership. Users select their current circumstances for each item against a 5-point ordinal scale (precontemplation to leading). Nurses representing 17 countries undertook matrix pilot testing. Results demonstrate variation across CSFs, with many countries at the earliest stages of implementation. Conclusions The MM has the potential to guide the strategic integration of genomics across nursing and enables additional assessments within and between countries to be made. Clinical relevance Nurse leadership and direction are essential to accelerate integration of genomics across nursing practice and education. The MM helps nurse leaders to benchmark progress and guide strategic planning to build global genomic nursing capacity.

PURPOSE: Widespread, quality genomics education for health professionals is required to create a competent genomic workforce. A lack of standards for reporting genomics education and evaluation limits the evidence base for replication and comparison. We therefore undertook a consensus process to develop a recommended minimum set of information to support consistent reporting of design, development, delivery, and evaluation of genomics education interventions.METHODS: Draft standards were derived from literature (25 items from 21 publications). Thirty-six international experts were purposively recruited for three rounds of a modified Delphi process to reach consensus on relevance, clarity, comprehensiveness, utility, and design.RESULTS: The final standards include 18 items relating to development and delivery of genomics education interventions, 12 relating to evaluation, and 1 on stakeholder engagement.CONCLUSION: These Reporting Item Standards for Education and its Evaluation in Genomics (RISE2 Genomics) are intended to be widely applicable across settings and health professions. Their use by those involved in reporting genomics education interventions and evaluation, as well as adoption by journals and policy makers as the expected standard, will support greater transparency, consistency, and comprehensiveness of reporting. Consequently, the genomics education evidence base will be more robust, enabling high-quality education and evaluation across diverse settings.

Researchers and food system actors have developed a best practice model to assist with (re)building or maintaining consumer trust in the food system in the event of a food incident. The aim of the present study was to determine how well the model aligns with consumer views of the strategies required to maintain consumer trust during and following a food incident. This qualitative public deliberation study employed experimental, developmental vignettes during 2 full-day sessions in May 2018. Following general discussion of the food incident scenario presented in the vignettes, 15 South Australian adults (in two groups) developed a collated and ranked list of key strategies to be used by food system actors during a food incident to assist in maintaining consumer trust. Participants were then introduced to the existing model, and engaged in discussions about if and how their strategies aligned with those in the existing model. Findings demonstrate broad consistency between the two groups and the model in the strategies identified as key for (re)building and maintaining consumer trust during a food incident. For example, timely transparency was reported by consumers as the key strategy for maintaining consumer trust during and after a food incident. However, participants expressed pessimism regarding actors’ ability to implement strategies. Although minimal, differences were noted in strategy descriptions between the groups and the Model. This study suggests that overall the model is highly consistent with consumer views. If actors are to demonstrably apply the Model in the event of a food incident, our data suggest that the identified strategies will successfully assist them in (re)building and/or maintaining consumer trust in the food supply.

Purpose The purpose of this paper is to compare the perspectives of actors who contribute to trust in the food system in four high income countries which have diverse food incident histories: Australia, New Zealand (NZ), the United Kingdom (UK) and the Island of Ireland (IOI), focussing on their communication with the public, and their approach to food system interrelationships. Design/methodology/approach Data were collected in two separate studies: the first in Australia, NZ and the UK (Study 1); and the second on the IOI (Study 2). In-depth interviews were conducted with media, food industry and food regulatory actors across the four regions (n=105, Study 1; n=50, Study 2). Analysis focussed on identifying similarities and differences in the perspectives of actors from the four regions regarding the key themes of communication with the public, and relationships between media, industry and regulators. Findings While there were many similarities in the way food system actors from the four regions discussed (re)building trust in the context of a food incident, their perceptions differed in a number of critical ways regarding food system actor use of social media, and the attitudes and approaches towards relationships between food system actors. Originality/value This paper outlines opportunities for the regions studied to learn from each other when looking for practical strategies to maximise consumer trust in the food system, particularly relating to the use of social media and attitudes towards role definition in industry–regulator relationships.

Awareness and management of ethical issues in data science is becoming increasingly relevant to us all, and a crucial skill for data scientists. Discussion of contemporary issues in collaborative and interdisciplinary spaces is an engaging way to allow data science work to be influenced by those with expertise in philosophy, history, sociology and beyond, and so improve the ability of data scientists to think critically about the ethics of their work. However, opportunities to do so are limited. Data Ethics Club (based at dataethicsclub.com) is a fortnightly discussion group about data science and ethics, whose community-generated resources are hosted in an open online repository. This repository includes a list of data science and ethics materials around multiple topics of interest, alongside processes and templates for leading an online data ethics discussion group. These meetings and materials are designed to reduce the barrier to learning, reflection and critique on data science and ethics for all interested parties, with the broader aim of building ethics into the cultural fabric of quality data science work.

Trust in public health officials and the information they provide is essential for the public uptake of preventative strategies to reduce the transmission of COVID-19. This paper discusses how a model for developing and maintaining trust in public health officials during food safety incidents and scandals might be applied to pandemic management. The model identifies ten strategies to be considered, including: transparency; development of protocols and procedures; credibility; proactivity; putting the public first; collaborating with stakeholders; consistency; education of stakeholders and the public; building your reputation; and keeping your promises. While pandemic management differs insofar as the responsibility lies with the public rather than identifiable regulatory bodies, and governments must weigh competing risks in creating policy, we conclude that many of the strategies identified in our trust model can be successfully applied to the maintenance of trust in public health officials prior to, during, and after pandemics.

Global pandemics are likely to increase in frequency and severity, and media communication of key messages represents an important mediator of the behavior of individuals in response to public health countermeasures. Where the media places responsibility during a pandemic is therefore important to study as blame is commonly used as a tool to influence public behavior but can also lead to the subjective persecution of groups. The aim of this paper is to investigate where the media places responsibility for COVID-19 in Australia. Specifically, we identify the key themes and frames that are present and observe how they changed over the course of the COVID-19 pandemic in relation to government actions and progression of the pandemic. Understanding media representations of the COVID-19 pandemic will provide insights into ways in which responsibility is framed in relation to health action. Newspaper articles from the Australian and the Sydney Morning Herald were sampled between January 20 and March 31 2020 on every second Monday. Factiva was used to identify and download newspaper articles using the following search criteria: “COVID-19” OR coronavirus OR “Wuhan virus” OR “corona virus” OR “Hebei virus” OR “wet market” OR (Wuhan AND virus) OR (market AND Wuhan and virus) or (China AND Virus) or (Novel AND Virus). Articles were imported into Nvivo and thematic and framing analyses were used. The results show that framing of the pandemic was largely based on societal issues with the theme of economic disruption prevalent throughout the study time period. Moral evaluations of the pandemic were infrequent initially but increased co-incident with the first signs of “flattening of the curve.” Explicit examples of blame were very rare but were commonly implied based on the causal origin of the virus. The Australian printed media were slow to report on the COVID-19 pandemic, in addition they were reluctant to apportion blame until the end of the study period, after confirmed case rates had begun to slow. This is interpreted as being due to an evaluation of the pandemic risks as low by the media and therefore the tools of othering and blame were not used until after the study period when the actual risks had begun to abate, more consistent with an inquiry than a mediating mechanism.

PURPOSE: The changes needed to accelerate integration of genomics across nursing are complex, with significant challenges faced globally. Common themes lend themselves to a coordinated and collaborative strategic approach to sustained change. We aim to synthesize the outputs of a research program to present a roadmap for nursing leadership to guide integration of genomics across practice. DESIGN: Mixed methods involving a purposive sample of global nursing leaders and nursing organizations in a sustained, highly interactive program. METHODS: Experts in nursing, health care and healthcare services, policy, and leadership were recruited. Online surveys preceded a 3-day residential meeting utilizing participatory methods and techniques to gain consensus on the essential elements of a roadmap to promote genomics integration. FINDINGS: Twenty-three leaders representing 19 countries and seven organizations participated overall. Data on the scope and status of nursing, genomics health care, and resources have been synthesized. Participants identified 117 facilitators to genomics integration across diverse sources. Barriers and priorities identified were mapped to the constructs of the Consolidated Framework for Implementation Research. The roadmap is underpinned by a maturity matrix created by participants to guide and benchmark progress in genomics integration. CONCLUSIONS: Nurse leaders seeking to accelerate change can access practical guidance with the roadmap, underpinned by support through the Global Genomics Nursing Alliance and its strategic priorities. CLINICAL RELEVANCE: Genomics is shaping the future of healthcare, but change is needed for integration across nursing. This practical roadmap, adaptable to local health systems and clinical and educational contexts, is relevant to nurse leaders aiming to accelerate change.

Purpose Nurses have a pivotal role in bringing the benefits of genomics and precision medicine to everyday health care, but a concerted global effort is needed to transform nursing policy and practice to address widely acknowledged deficits in nurses' genomic literacy. The purpose was to conduct a global country and organization review of nursing engagement with genomics, informing a landscape analysis to assess readiness for integration of genomics into nursing. Design Global nursing leaders and nursing organizations were recruited using a purposive sampling strategy to complete an online survey that assessed the scope of genomic integration in practice and education, challenges and barriers, and priorities for action. Methods The survey was administered online following an orientation webinar. Given the small numbers of nurse leaders globally, results were analyzed and presented descriptively. Findings Delegates consisted of 23 nurse leaders from across the world. Genomic services were offered predominantly in specialty centers consisting mostly of newborn screening (15/18) and prenatal screening (11/18). Genomic literacy and infrastructure deficits were identified in both practice and education settings, with only one country reporting a genetic/genomic knowledge and skill requirement to practice as a general nurse. Conclusions These data provide insights into the commitment to and capacity for nursing to integrate genomics, revealing common themes and challenges associated with adoption of genomic health services and integration into practice, education, and policy. Such insights offer valuable context and baseline information to guide the activities of a new Global Genomics Nursing Alliance (G2NA). The G2NA will use the landscaping exercise as a springboard to explore how to accelerate the integration of genomics into nursing healthcare. Clinical relevance Genomics is relevant to all healthcare providers across the healthcare continuum. It provides an underpinning for understanding health, risks for and manifestations of disease, therapeutic decisions, development of new therapies, and responses to interventions. Harnessing the benefits of genomics to improve health and care outcomes and reduce costs is a global nursing challenge.

Copyright 2017 by The American Council on Consumer Interests. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for self-archiving. This author accepted manuscript is made available following 24 month embargo from date of publication (Sept 2017) in accordance with the publisher’s archiving policy

Smartphone applications are increasingly being used to support nutrition improvement in community settings. However, there is a scarcity of practical literature to support researchers and practitioners in choosing or developing health applications. This work maps the features, key content, theoretical approaches, and methods of consumer testing of applications intended for nutrition improvement in community settings. A systematic, scoping review methodology was used to map published, peer-reviewed literature reporting on applications with a specific nutrition-improvement focus intended for use in the community setting. After screening, articles were grouped into 4 categories: Dietary selfmonitoring trials, nutrition improvement trials, application description articles, and qualitative application development studies. For mapping, studies were also grouped into categories based on the target population and aim of the application or program. Of the 4818 titles identified from the database search, 64 articles were included. The broad categories of features found to be included in applications generally corresponded to different behavior change support strategies common to many classic behavioral change models. Key content of applications generally focused on food composition, with tailored feedback most commonly used to deliver educational content. Consumer testing before application deployment was reported in just over half of the studies. Collaboration between practitioners and application developers promotes an appropriate balance of evidence-based content and functionality. This work provides a unique resource for program development teams and practitioners seeking to use an application for nutrition improvement in community settings. Refereed/Peer-reviewed

As the oldest continuous living civilizations in the world, Aboriginal and Torres Strait Islander peoples have strength, tenacity, and resilience. Initial colonization of the landscape included violent dispossession and removal of people from Country to expand European land tenure and production systems, loss of knowledge holders through frontier violence, and formal government policies of segregation and assimilation designed to destroy ontological relationships with Country and kin. The ongoing manifestations of colonialism continue to affect food systems and food knowledges of Aboriginal peoples, and have led to severe health inequities and disproportionate rates of nutrition-related health conditions. There is an urgent need to collaborate with Aboriginal and Torres Strait Islander peoples to address nutrition and its underlying determinants in a way that integrates Aboriginal and Torres Strait Islander peoples’ understandings of food and food systems, health, healing, and well-being. We use the existing literature to discuss current ways that Australian Aboriginal and Torres Strait Islander peoples are portrayed in the literature in relation to nutrition, identify knowledge gaps that require further research, and propose a new way forward.

Background Scarce literature comprehensively captures the transition to solid foods for children in remote Aboriginal Australian communities, a population expected to be especially vulnerable to nutritional inadequacy for largely socio-economic reasons. This study describes the dietary intake of children aged 6–36 months in a remote Aboriginal community during the years of solids introduction and establishment. Specifically, we aimed to explore milk feeding practices, major sources of nutrition and traditional food consumption, dietary patterns and nutrient and food group intakes, and compare these to national and international recommendations. Methods This dietary assessment was conducted as part of an observational, cross-sectional Child Health and Nutrition study. Three 24-h dietary recalls were completed with the parent/care-giver of each participant over 2–4 weeks, capturing a pay-week, non-pay-week and weekend day from October 2017–February 2018. Additional information collected included sociodemographic data, food security status, usual cooking practices, and attendance at playgroup. Results Diet histories for 40 children were included in the analysis (~ 40% of the population). Breast feeding rates were high (85%), with mothers exclusively feeding on demand. Very few participants met recommended intakes for wholegrains (n = 4, 10%), vegetables (n = 7, 18%), dairy (n = 5, 18%) and fruit (n = 13, 33%), while more children met the guidelines for meat (n = 19, 48%) and discretionary food intake (n = 28, 70%). Traditional foods were always nutritionally dense and consumed frequently (n = 22, 55% of children). Statistically significant pay-cycle differences in intakes of all macro-, and numerous micro-nutrients were observed. Conclusions Many positive early feeding practices are currently enacted in remote Aboriginal communities including responsive and long duration breastfeeding, and nutrient-dense traditional food consumption from earliest solids introduction. However, the non-pay-week/pay-week cycle is impacting the quality and quantity of children’s diets at a time of rapid growth and development.

Summary Consumer trust in the modern food system is essential given its complexity. Contexts vary across countries with regard to food incidents, regulation and systems. It is therefore of interest to compare how key actors in different countries might approach (re)building consumer trust in the food system; and particularly relevant to understanding how food systems in different regions might learn from one another. The purpose of this paper is to explore differences between strategies for (re)building trust in food systems, as identified in two separate empirical studies, one conducted in Australia, New Zealand and the UK (Study 1) and another on the Island of Ireland (Study 2). Interviews were conducted with media, food industry and food regulatory actors across the two studies (n = 105 Study 1; n = 50 Study 2). Data were coded into strategy statements, strategies describing actions to (re)build consumer trust. Strategy statements were compared between Studies 1 and 2 and similarities and differences were noted. The strategy statements identified in Study 1 to (re)build consumer trust in the food system were shown to be applicable in Study 2, however, there were notable differences in the contextual factors that shaped the means by which strategies were implemented. As such, the transfer of such approaches across regions is not an appropriate means to addressing breaches in consumer trust. Notwithstanding, our data suggest that there is still capacity to learn between countries when considering strategies for (re)building trust in the food system but caution must be exercised in the transfer of approaches.

General consumer knowledge of and engagement with the production of food has declined resulting in increasing consumer uncertainty about, and sensitivity to, food risks. Emphasis is therefore placed on providing information for consumers to reduce information asymmetry regarding food risks, particularly through food labelling. This study examines the role of food labelling in influencing consumer perceptions of food risks. In-depth, 1-h interviews were conducted with 24 Australian consumers. Participants were recruited based on an a priori defined food safety risk scale, and to achieve a diversity of demographic characteristics. The methodological approach used, adaptive theory, was chosen to enable a constant interweaving of theoretical understandings and empirical data throughout the study. Participants discussed perceiving both traditional (food spoilage/microbial contamination) and modern (social issues, pesticide and 'chemical' contamination) risks as present in the food system. Food labelling was a symbol of the food system having managed traditional risks, and a tool for consumers to personally manage perceived modern risks. However, labelling also raised awareness of modern risks not previously considered. The consumer framing of risk presented demonstrates the need for more meaningful consumer engagement in policy decision making to ensure risk communication and management meet public expectations. This research innovatively identifies food labelling as both a symbol of, and a tool for, the management of perceived risks for consumers. Therefore it is imperative that food system actors ensure the authenticity and trustworthiness of all aspects of food labelling, not only those related to food safety.

Consumer trust in food system actors is foundational for ensuring consumer confidence in food safety. As food labelling is a direct communication between consumers and food system actors, it may influence consumer perceptions of actor trustworthiness. This study explores the judgements formed about the trustworthiness of the food system and its actors through labelling, and the expectations these judgements are based on. In-depth, semi-structured interviews with 24 Australian consumers were conducted. Theoretical sampling focussed on shopping location, dietary requirements, rurality, gender, age and educational background. The methodological approach used (adaptive theory) enabled emerging data to be examined through the lens of a set of guiding theoretical concepts, and theory reconsidered in light of emerging data. Food labelling acted as a surrogate for personal interaction with industry and government for participants. Judgements about the trustworthiness of these actors and the broader food system were formed through interaction with food labelling and were based on expectations of both competence and goodwill. Interaction with labelling primarily reduced trust in actors within the food system, undermining trust in the system as a whole. Labelling has a role as an access point to the food system. Access points are points of vulnerability for systems, where trust can be developed, reinforced or broken down. For the participants in this study, in general labelling demonstrates food system actors lack goodwill and violate their fiduciary responsibility. This paper provides crucial insights for industry and policy actors to use this access point to build, rather than undermine, trust in food systems.

There is both empirical and theoretical research supporting the idea that consumers’ interaction with food labelling impacts on their trust in the food system and its actors. This paper explores the process by which consumers’ interpretation of, and interaction with, labelling results in the formation of trust related judgements. In-depth, semi-structured interviews with 24 Australian consumers were conducted. Theoretical sampling was used to gather a wide range of consumer perspectives. Real food packages were used as prompts for discussion in interviews, with one interview section requiring participants to examine particular products while thinking aloud. Process and thematic coding were used in transcript analysis. Labelling was seen by participants as a direct and active communication with ‘labellers’. The messages communicated by individual label elements were interpreted more broadly than their regulatory definitions and were integrated during the process of making sense of labelling. This enabled participants to form trust related judgements through interaction with labelling. Finally, product and consumer characteristics varied participants’ judgements about the same or similar label elements and products. Divergence in consumer and regulatory interpretations of labelling creates a situation where labelling may be both fully compliant with all relevant legislation and regulation, and still be perceived as misleading by consumers. This suggests that the rational frameworks that policy seeks to overlay on consumers when considering food labelling regulation may be hindering consumer belief in the trustworthiness of labellers. Policy must recognise the different, yet equally legitimate, ways of interpreting labelling if it is to foster, and not undermine, consumer trust in the food system generally.

Background Global genomic literacy of all health professions, including nurses, remains low despite an inundation of genomic information with established clinical and analytic validity and clinical utility. Genomic literacy and competency deficits contribute to lost opportunities to take advantage of the benefits that genomic information provides to improve health outcomes, reduce healthcare costs, and increase patient quality and safety. Nurses are essential to the integration of genomics into healthcare. The greatest challenges to realizing their potential in successful integration include education and awareness. Identification of resources, their focus, whether they targeted at nursing, and how to access them, form the foundation for a global genomic resource initiative led by the Global Genomics Nursing Alliance. Objectives The aim was to identify existing global genomic resources and competencies, identifying the source, type and accessibility. Design Cross sectional online descriptive survey to ascertain existing genomic resources. Settings Limited to eighteen countries and seven organizations represented by delegates attending the inaugural meeting in 2017 of the Global Genomics Nursing Alliance. Participants A purposive sample of global nursing leaders and representatives of national and international nursing organizations. Methods The primary method was by online survey administered following an orientation webinar. Given the small numbers of nurse leaders in genomics within our sample (and indeed within the world), results were analyzed and presented descriptively. Those identifying resources provided further detailed resource information. Additional data were collected during a face-to-face meeting using an electronic audience-response system. Results Of the twenty-three global delegates responding, 9 identified existing genomic resources that could be used for academic or continuing genomics education. Three countries have competence frameworks to guide learning and 5 countries have national organizations for genetics nurses. Conclusions The genomic resources that already exist are not readily accessible or discoverable to the international nursing community and as such are underutilized.

Protein intakes of preterm infants are frequently below recommendations, but few studies report accurate intakes due to the difficulty of analysing human milk clinically. This observational analysis from a randomised trial of infants born &lt, 31 weeks&rsquo, gestation, investigating two levels of protein fortification, reports protein intakes compared with requirements and determines the association of direct breastfeeding on growth. Ninety-two infants (median gestational age 28 weeks, Interquartile range (IQR) 26&ndash, 29, mean birth weight 1040 g, SD 300 g) were studied. Infants born weighing &lt, 1000 g were underfed protein compared with recommendations (median (IQR) intake of 3.0 (2.0&ndash, 3.7) g/kg/day in week 2 versus recommendation of 4&ndash, 4.5 g/kg/day), while those born weighing &ge, 1000 g met recommended protein intakes after the first week of life (median (IQR) intake of 3.7 (3.0&ndash, 4.0) g/kg/day in week 2 versus recommendation of 3.5&ndash, 4.5 g/kg/day). A moderate, negative correlation between the mean number of breast feeds and change in rate of weight gain (r = &minus, 0.37, p = 0.001) was found. Protein intakes of infants &lt, 1000 g did not meet recommendations and all infants were underfed protein and energy in the first week of life. Current protein fortification is inadequate for infants born &lt, 1000 g. Exploratory analysis showed faltering rate weight gain associated with increasing number of breast feeds and these results warrant confirmation.

The Menzies Remote Short-item Dietary Assessment Tool (MRSDAT) can be used to derive a dietary index score, which measures the degree of compliance with the Australian Dietary Guidelines. This study aimed to determine the relative validity of a dietary index score for children aged 6–24 months, living in a Remote Aboriginal Community (RAC), derived using MRSDAT. This validation study compared dietary index scores derived using MRSDAT with those derived from the average of three 24-h recalls. Participants were aged 6–36 months at the first dietary assessment and were living in a RAC. The level of agreement between the two methods was explored using Lin’s concordance correlation coefficient (CCC), Bland-Altman plots, weighted Cohen’s kappa, and Fischer’s exact and paired t-tests. Forty participants were recruited. The CCC was poor between methods (R = 0.35, 95% CI 0.06, 0.58), with MRSDAT estimating higher dietary intake scores for all food groups except fruit, and higher dietary quality scores by an average of 4.78 points/100. Community-based Aboriginal researchers were central to this validation study. MRSDAT was within the performance range of other short-item dietary assessment tools developed for young children, and shows promise for use with very young children in RACs.

This systematic review and meta-analysis synthesised the post-1990 literature examining the effect of human milk on morbidity, specifically necrotising enterocolitis (NEC), late onset sepsis (LOS), retinopathy of prematurity (ROP), bronchopulmonary dysplasia (BPD) and neurodevelopment in infants born ≤28 weeks’ gestation and/or publications with reported infant mean birth weight of ≤1500 g. Online databases including Medline, PubMed, CINAHL, Scopus, and the Cochrane Central Register of Controlled Trials were searched, and comparisons were grouped as follows: exclusive human milk (EHM) versus exclusive preterm formula (EPTF), any human milk (HM) versus EPTF, higher versus lower dose HM, and unpasteurised versus pasteurised HM. Experimental and observational studies were pooled separately in meta-analyses. Risk of bias was assessed for each individual study and the GRADE system used to judge the certainty of the findings. Forty-nine studies (with 56 reports) were included, of which 44 could be included in meta-analyses. HM provided a clear protective effect against NEC, with an approximate 4% reduction in incidence. HM also provided a possible reduction in LOS, severe ROP and severe NEC. Particularly for NEC, any volume of HM is better than EPTF, and the higher the dose the greater the protection. Evidence regarding pasteurisation is inconclusive, but it appears to have no effect on some outcomes. Improving the intake of mother’s own milk (MOM) and/or donor HM results in small improvements in morbidity in this population.

PURPOSE: Nurses have a pivotal role in bringing the benefits of genomics and precision medicine to everyday health care, but a concerted global effort is needed to transform nursing policy and practice to address widely acknowledged deficits in nurses’ genomic literacy. The purpose was to conduct a global country and organization review of nursing engagement with genomics, informing a landscape analysis to assess readiness for integration of genomics into nursing. DESIGN: Global nursing leaders and nursing organizations were recruited using a purposive sampling strategy to complete an online survey that assessed the scope of genomic integration in practice and education, challenges and barriers, and priorities for action. METHODS: The survey was administered online following an orientation webinar. Given the small numbers of nurse leaders globally, results were analyzed and presented descriptively. FINDINGS: Delegates consisted of 23 nurse leaders from across the world. Genomic services were offered predominantly in specialty centers consisting mostly of newborn screening (15/18) and prenatal screening (11/18). Genomic literacy and infrastructure deficits were identified in both practice and education settings, with only one country reporting a genetic/genomic knowledge and skill requirement to practice as a general nurse. CONCLUSIONS: These data provide insights into the commitment to and capacity for nursing to integrate genomics, revealing common themes and challenges associated with adoption of genomic health services and integration into practice, education, and policy. Such insights offer valuable context and baseline information to guide the activities of a new Global Genomics Nursing Alliance (G2NA). The G2NA will use the landscaping exercise as a springboard to explore how to accelerate the integration of genomics into nursing healthcare. CLINICAL RELEVANCE: Genomics is relevant to all healthcare providers across the healthcare continuum. It provides an underpinning for understanding health, risks for and manifestations of disease, therapeutic decisions, development of new therapies, and responses to interventions. Harnessing the benefits of genomics to improve health and care outcomes and reduce costs is a global nursing challenge.

Although extensive literature on parent feeding practices among the general Australian population exists, Australian Indigenous populations are generally overlooked. A systematic scoping review was carried out to map any source of literature showing Indigenous parent feeding practices in Australia in the context of what is known about parent feeding practices among broader Australian populations and Indigenous populations in other high-income countries.A search of 8 electronic health databases was conducted. Inclusion criteria were children aged

Background: The disproportionate burden of noncommunicable disease among Indigenous Australians living in remote Indigenous communities (RICs) is a complex and persistent problem. Smartphones are increasingly being used by young Indigenous adults and therefore represent a promising method to engage them in programs seeking to improve nutritional intake. Objective: This study aimed to consult RIC members to inform the content of a smartphone app that can be used to monitor and reduce sugar-sweetened beverage intake in RICs. Methods: The study was conducted in two phases. The formative phase involved a simulated grocery selection activity with think aloud (“think aloud shop”), a semistructured interview, a questionnaire outlining current smartphone and app use, and a paper prototyping activity. A preliminary end-user testing phase involved a think aloud prototype test and a semistructured interview regarding user satisfaction. Convenience sampling was used to recruit 20 18- to 35-year-old smartphone users for each phase from two RICs in the Northern Territory, Australia. Thematic analysis of transcribed audio recordings was used to identify determinants of food choice from the think aloud shop; themes related to the Theory of Planned Behavior (TPB) from the eating behaviors interview; and usability, comprehension, and satisfaction with the app from the preliminary end-user testing. Results: Smartphone use in RICs is currently different to that found in urban environments; in particular, extremely low use of Facebook, restricted variety of phone types, and limited Internet access. Findings regarding promoting app engagement indicate that utilizing an opt-in approach to social features such as leader boards and team challenges is essential. The inclusion of games was also shown to be important for satisfaction, as were the use of audio features, contextually embedded dissemination, and streamlined app design for comprehension in this target group. Conclusions: This research provides critical insights and concrete recommendations for the development of lifestyle improvement apps targeted toward disadvantaged young adults in nonurban settings, specifically RICs. It serves as a framework for future app development projects using a consultative user-centered design approach, supporting calls for the increased use of this strategy in app development. [JMIR Mhealth Uhealth 2017;5(12):e192]

BACKGROUND The disproportionate burden of noncommunicable disease among Indigenous Australians living in remote Indigenous communities (RICs) is a complex and persistent problem. Smartphones are increasingly being used by young Indigenous adults and therefore represent a promising method to engage them in programs seeking to improve nutritional intake. OBJECTIVE This study aimed to consult RIC members to inform the content of a smartphone app that can be used to monitor and reduce sugar-sweetened beverage intake in RICs. METHODS The study was conducted in two phases. The formative phase involved a simulated grocery selection activity with think aloud (“think aloud shop”), a semistructured interview, a questionnaire outlining current smartphone and app use, and a paper prototyping activity. A preliminary end-user testing phase involved a think aloud prototype test and a semistructured interview regarding user satisfaction. Convenience sampling was used to recruit 20 18- to 35-year-old smartphone users for each phase from two RICs in the Northern Territory, Australia. Thematic analysis of transcribed audio recordings was used to identify determinants of food choice from the think aloud shop; themes related to the Theory of Planned Behavior (TPB) from the eating behaviors interview; and usability, comprehension, and satisfaction with the app from the preliminary end-user testing. RESULTS Smartphone use in RICs is currently different to that found in urban environments; in particular, extremely low use of Facebook, restricted variety of phone types, and limited Internet access. Findings regarding promoting app engagement indicate that utilizing an opt-in approach to social features such as leader boards and team challenges is essential. The inclusion of games was also shown to be important for satisfaction, as were the use of audio features, contextually embedded dissemination, and streamlined app design for comprehension in this target group. CONCLUSIONS This research provides critical insights and concrete recommendations for the development of lifestyle improvement apps targeted toward disadvantaged young adults in nonurban settings, specifically RICs. It serves as a framework for future app development projects using a consultative user-centered design approach, supporting calls for the increased use of this strategy in app development.

Background: Cardiovascular disease is a leading cause of death worldwide and genetic risk factors play a role in nearly all such cases. In the UK, health service capacity to meet either current or future estimated needs of people affected by inherited cardiac conditions (ICCs) is inadequate. In 2008 the British Heart Foundation funded nine three-year Cardiac Genetics Nurse (CGN) posts across England and Wales to enhance ICC services. The CGNs were experienced cardiac nurses who had additional training in genetics and acted to coordinate cardiac and genetics service activities. Aim: To create and apply a framework against which progress in ICC service improvement could be measured over time following the CGN appointments. Methods: A performance grid (Maturity Matrix, MM) articulating standards in five domains against stages of ICC service development was created by stakeholders through a consensus approach. The MM was used to guide staged self-assessments by the CGNs between 2009 and 2011. A six-point scale was used to locate progress from ‘emerging’ to ‘established’, represented graphically by spider diagrams. Results: Progress in all domains was significant for new, emerging and established services. It was most notable for effective utilisation of care pathways and efficient running of clinics. Commitment to family-centred care was evident. Conclusion: The ICC-MM provided a comprehensive framework for assessing ICC services and has merit in providing guidance on development. CGNs can help integrate care across specialisms, facilitating the development of effective and sustainable ICC services at new, developing, and more established ICC service locations.

KIRK M., TONKIN E. & SKIRTON H. (2014) An iterative consensus-building approach to revising a genetics/genomics competency framework for nurse education in the UK. Journal of Advanced Nursing 70(2), 405–420. doi: 10.1111/jan.12207 AimTo report a review of a genetics education framework using a consensus approach to agree on a contemporary and comprehensive revised framework. BackgroundAdvances in genomic health care have been significant since the first genetics education framework for nurses was developed in 2003. These, coupled with developments in policy and international efforts to promote nursing competence in genetics, indicated that review was timely. DesignA structured, iterative, primarily qualitative approach, based on a nominal group technique. MethodA meeting convened in 2010 involved stakeholders in UK nursing education, practice and management, including patient representatives (n = 30). A consensus approach was used to solicit participants' views on the individual/family needs identified from real-life stories of people affected by genetic conditions and the nurses' knowledge, skills and attitudes needed to meet those needs. Five groups considered the stories in iterative rounds, reviewing comments from previous groups. Omissions and deficiencies were identified by mapping resulting themes to the original framework. Anonymous voting captured views. Educators at a second meeting developed learning outcomes for the final framework. FindingsDeficiencies in relation to Advocacy, Information management and Ongoing care were identified. All competencies of the original framework were revised, adding an eighth competency to make explicit the need for ongoing care of the individual/family. ConclusionModifications to the framework reflect individual/family needs and are relevant to the nursing role. The approach promoted engagement in a complex issue and provides a framework to guide nurse education in genetics/genomics; however, nursing leadership is crucial to successful implementation.

Advances in genetics are bringing unprecedented opportunities for understanding health and disease, developing new therapies and changes in healthcare practice. Many nurses and midwives lack competence and confidence in integrating genetics into professional practice. One approach to enhance understanding of genetics is to simulate clinical exposure through storytelling. Stories are acknowledged as a powerful learning tool, being understandable and memorable, stimulating critical thinking, and linking theory to practice. Telling Stories, Understanding Real Life Genetics is a freely accessible website that sets people's stories within an education framework. The links between the stories and professional practice are made explicit and additional features support learning and teaching. Care of the storytellers within an ethical framework is of paramount importance. Storytellers are viewed as partners in the project. The challenges encountered include preserving the authentic voice and dignity of the storyteller. Project team members have also experienced ‘professional shame’ when negative experiences have been recounted, and the stories have had an impact on the team. The experience of working with storytellers has been positive. The storytellers want to be heard so that others will benefit from their stories. They serve as a reminder of why this work is important.

Objective. This review aimed to investigate the relationship between varying levels of enteral protein intake and growth in preterm infants, regardless of feeding method. Data Sources. Electronic databases were searched for relevant studies, as were review articles, reference lists, and text books. Study Selection. Trials were included if they were randomized or quasirandomized, participants were 1000 g.

Background Contemporary food systems are vast and complex, creating greater distance between consumers and their food. Consequently, consumers are required to put faith in a system of which they have limited knowledge or control. Country of origin labelling (CoOL) is one mechanism that theoretically enables consumer knowledge of provenance of food products. However, this labelling system has recently come under Australian Government review and recommendations for improvements have been proposed. Consumer engagement in this process has been limited. Therefore this study sought to obtain further consumer opinion on the issue of CoOL and to identify the extent to which Australian consumers agree with Australian Government recommendations for improvements. Methods A citizens’ jury was conducted with a sample of 14 South Australian consumers to explore their perceptions on whether the CoOL system allows them to make informed food choices, as well as what changes (if any) need to be made to enable informed food choices (recommendations). Results Overall, jurors’ perception of usefulness of CoOL, including its ability to enable consumers to make informed food choices, fluctuated throughout the Citizens’ Jury. Initially, the majority of the jurors indicated that the labels allowed informed food choice, however by the end of the session the majority disagreed with this statement. Inconsistencies within jurors’ opinions were observed, particularly following delivery of information from expert witnesses and jury deliberation. Jurors provided recommendations for changes to be made to CoOL, which were similar to those provided in the Australian Government inquiry. Conclusions Consumers in this study engaged with the topical issue of CoOL and provided their opinions. Overall, consumers do not think that the current CoOL system in Australia enables consumers to make informed choices. Recommendations for changes, including increasing the size of the label and the label’s font, and standardising its position, were made.

Early Childhood Education and Care (ECEC) settings have a pivotal role in shaping children’s dietary food habits by providing the contextual environment within which they develop these behaviours. This study examines systematic reviews for (1) the effectiveness of interventions to promote healthy eating in children aged 2–5 years attending centre-based childcare; (2) intervention characteristics which are associated with promoting healthy eating and; (3) recommendations for child-health policies and practices. An Umbrella review of systematic reviews was undertaken using a standardized search strategy in ten databases. Twelve systematic reviews were examined using validated critical appraisal and data extraction tools. Children’s dietary food intake and food choices were significantly influenced. Interventions to prevent obesity did not significantly change children’s anthropometric measures or had mixed results. Evidence was more convincing if interventions were multi-component, addressed physical activity and diet, targeted individual-level and environmental-level determinants and engaged parents. Positive outcomes were mostly facilitated by researchers/external experts and these results were not replicated when implemented in centres by ECEC providers without this support. The translation of expert-led interventions into practice warrants further exploration of implementation drivers and barriers. Based on the evidence reviewed, recommendations are made to inform child-health directed practices and policies.

Aim: To determine how accurately the daily prescribed feed volume (mL/day) estimates the actual intake of breastfeeding preterm infants and to characterise the volume taken during a breastfeed at differing gestational and postmenstrual ages. Methods: A cross sectional study was conducted on preterm infants born &lt, 37 weeks gestation from two Australian neonatal units. To determine the volume taken in a 24-h period infants were weighed before and after each breastfeed. This volume was added to the charted intake to determine the total intake and then compared to the prescribed feed volume. Bland Altman analyses were used to assess the level of agreement between the two methods. Results: Fifty six infants were studied on 206 breastfeeding occasions. There was a small bias (27 mLs/day) but large 95% limits of agreement (–76 to 130 mL/day). The volume taken during a single breastfeed ranged from 0 to 101 mL (median 23 mL, IQR 9 to 31 mL) and was greater in more mature infants. Conclusions: Using the prescribed feed volume to estimate total intake has limited clinical utility for the individual infant, however the relatively small bias means that it may be useful within a population or for comparison between groups in which population means are compared. There was a large variation in volume taken during a breastfeed across all gestational and postmenstrual ages.

Cornelia de Lange syndrome (CdLS) is a multiple malformation disorder characterized by dysmorphic facial features, mental retardation, growth delay and limb reduction defects. We indentified and characterized a new gene, NIPBL, that is mutated in individuals with CdLS and determined its structure and the structures of mouse, rat and zebrafish homologs. We named its protein product delangin. Vertebrate delangins have substantial homology to orthologs in flies, worms, plants and fungi, including Scc2-type sister chromatid cohesion proteins, and D. melanogaster Nipped-B. We propose that perturbed delangin function may inappropriately activate DLX genes, thereby contributing to the proximodistal limb patterning defects in CdLS. Genome analyses typically identify individual delangin or Nipped-B-like orthologs in diploid animal and plant genomes. The evolution of an ancestral sister chromatid cohesion protein to acquire an additional role in developmental gene regulation suggests that there are parallels between CdLS and Roberts syndrome.

Cornelia de Lange Syndrome (CdLS) is a complex developmental disorder consisting of characteristic facial features, limb abnormalities, hirsutism, ophthalmologic involvement, gastroesophageal dysfunction, hearing loss, as well as growth and neurodevelopmental retardation. Most cases of CdLS appear to be sporadic. Familial cases are rare and indicate autosomal dominant inheritance. Several individuals with CdLS have been reported with chromosomal abnormalities, suggesting candidate genomic regions within which the causative gene(s) may lie. A CdLS gene location (CDL1) has been assigned to 3q26.3 based on phenotypic overlap with the duplication 3q syndrome (critical region 3q26.2-q27) and the report of a CdLS individual with a balanced de novo t(3;17)(q26.3;q23.1). It has been postulated that a gene within the dup3q critical region results in the CdLS when deleted or mutated. We have performed a linkage analysis to the minimal critical region for the dup3q syndrome (that encompasses the translocation breakpoint) on chromosome 3q in 10 rare familial cases of CdLS. Nineteen markers spanning a region of approximately 40 Mb (37 cM) were used. Results of a multipoint linkage analysis demonstrated total lod-scores that were negative across the chromosome 3q26-q27 region. In 4/10 families, lod-scores were less than –2 in the 2 cM region encompassing the translocation, while in the remaining 6/10 families, lod-scores could not exclude linkage to this region. These studies indicate that in some multicase families, the disease gene does not map to the CDL1 region at 3q26.3. © 2001 Wiley-Liss, Inc.

Cornelia de Lange syndrome (CdLS) is a rare developmental malformation syndrome characterised by mental handicap, growth retardation, distinctive facial features and limb reduction defects. The vast majority of CdLS cases are sporadic. We carried out a high density bacterial artificial chromosome (BAC) microarray comparative genome hybridisation screen but no evidence was found for a consistent pattern of microdeletion/micro-duplication. As an alternative, we focused on identifying chromosomal regions spanning associated translocation breakpoints. We prioritised the distal 3q region because of the occurrence, in a classical CdLS patient, of a de novo balanced translocation with a breakpoint at 3q26.3 and of reports of phenotypic overlap between cases of mild CdLS and individuals trisomic for the 3q26-q27 region. We show that the 3q26.3 breakpoint severs a previously uncharacterised giant gene, NAALADL2, containing at least 32 exons spanning 1.37 Mb. Northern blot analysis identified up to six different transcripts in the 1–10 kb range with strongest expression in kidney and placenta; embryonic expression was largely confined to duodenal and stomach endoderm, mesonephros, metanephros and pancreas. Transcript analysis identified extensive alternative splicing leading to multiple 5′ and 3′ untranslated regions and variable coding sequences. Multiple protein isoforms were defined by different N-terminal regions (with at least four alternative initiating methionine codons), and by differential protein truncation/use of alternative C-terminal sequences attributable to alternative splicing/polyadenylation. Outside the N-terminal regions, the predicted proteins showed significant homology to N-acetylated alpha-linked acidic dipeptidase and transferrin receptors. Mutation screening of NAALADL2 in a panel of CdLS patient DNA samples failed to identify patient-specific mutations. We discuss the possibility that the 3q26.3 translocation could nevertheless contribute to pathogenesis.

We have identified and characterised novel members of the mammalian polyhomeotic gene family, comprising a third human homologue, PHC3, and its mouse counterpart, Phc3. The two new genes have essentially the same genomic organisation, with 15 exons specifying proteins of 983 (PHC3) or 981 (Phc3) amino acids, with an overall sequence identity of 93%. Northern blot hybridisations have identified a single large transcript in a variety of adult mouse tissues and in situ hybridisation analyses indicate apparently ubiquitous expression during early human and mouse development. Exhaustive database screening suggests a maximum of three polyhomeotic homologues in humans and in mice and, for completeness, we have also derived the full-length coding sequence of the PHC2 gene (formerly called EDR2). The availability of full-length coding sequences for PHC2, PHC3 and Phc3 completes the profile of human and mouse polyhomeotic homologues and has enabled comprehensive comparative analyses of the human, mouse and Drosophila polyhomeotic proteins. The mammalian paralogues are located on three different chromosomes and pairwise comparisons of their protein products typically show about 34% amino acid sequence identity, except for some highly conserved domains for which we present consensus mammalian sequences. The data indicate that the novel PHC3 and Phc3 proteins are significantly more closely related to PHC2/Phc2 than either is to PHC1/Phc1 and reveal two hitherto unknown but highly conserved N-terminal domains that are shared by the PHC2/Phc2 and PHC3/Phc3 proteins but that are poorly conserved or absent in other polyhomeotic family members.

Cornelia de Lange Syndrome (CdLS) is a complex developmental disorder consisting of characteristic facial features, limb abnormalities, hirsutism, ophthalmologic involvement, gastroesophageal dysfunction, hearing loss, as well as growth and neuro-developmental retardation. Most cases of CdLS appear to be sporadic. Familial cases are rare and indicate autosomal dominant inheritance. Several individuals with CdLS have been reported with chromosomal abnormalities, suggesting candidate genomic regions within which the causative gene(s) may lie. A CdLS gene location (CDL1) has been assigned to 3q26.3 based on phenotypic overlap with the duplication 3q syndrome (critical region 3q26.2-q27) and the report of a CdLS individual with a balanced de novo t(3;17)(q26.3;q23.1). It has been postulated that a gene within the dup3q critical region results in the CdLS when deleted or mutated. We have performed a linkage analysis to the minimal critical region for the dup3q syndrome (that encompasses the translocation breakpoint) on chromosome 3q in 10 rare familial cases of CdLS. Nineteen markers spanning a region of approximately 40 Mb (37 cM) were used. Results of a multipoint linkage analysis demonstrated total lod-scores that were negative across the chromosome 3q26-q27 region. In 4/10 families, lod-scores were less than −2 in the 2 cM region encompassing the translocation, while in the remaining 6/10 families, lod-scores could not exclude linkage to this region. These studies indicate that in some multicase families, the disease gene does not map to the CDL1 region at 3q26.3.