The role of the arts in enhancing data literacy: A scoping review protocol.

Data literacy has been defined as "the ability to read, work with, analyze and argue with data". The United Nations has highlighted a growing risk of inequality for people excluded from the new world of data by lack of education, language, poverty, and discrimination and has called for the development of data literacy at all levels of society. Responses to data are shaped by personal, social and cultural influences, as well as by trust in the source. The arts can play an important role in regulating our responses to information and increasing accessibility, engagement and sense-making of data. However, to our knowledge, to date, there has been no comprehensive review of publications on the role of the arts in the context of data literacy. This paper presents a protocol and a methodological framework to perform a scoping review to identify and map the available evidence for the role of the arts in enhancing data literacy. The review aims to provide an overview of research over the past twenty years to develop a clearer understanding of (a) which art forms are represented in the literature (b) which population groups and settings are identified (c) and the rationale for using the arts to enhance data literacy.

A scoping review of the use of music as an arts-based method in migrant health research.

Background: There is a growing awareness of the need to include people's lived experiences in health decision-making. While much progress has been made in this field, exclusionary patterns persist regarding migrant participation in health research. The aim of this scoping review was to examine the available literature around the use of music as an arts-based research (ABR) method in migrant health research in order to extend knowledge of creative methods and tools used for migrant participation in health research. Methods: Our review follows a scoping review methodology. Searches were conducted in 11 electronic databases between June and August, 2020. We identified 14 eligible references published between January 2009 and August 2020. We analysed how music is utilised as an arts-based research method in community-based health and wellbeing contexts primarily with refugees, asylum seekers, undocumented migrants, and members of resettled immigrant communities. Results: The findings show that music's role is most prominent as a tool for recruitment and engagement followed by its use as a tool for dissemination. Music is effective as a means to co-produce and communicate knowledge of lived experiences of migration and related wellbeing issues. Recommendations and conclusions: Our recommendations for further research include the need for increased detail on the musical element in ABR projects; Explicit identification of such research as ABR; Greater recognition of a multi-arts understanding of music in the context of ABR; Harnessing the potential of music in ABR across the research cycle. We conclude that arts-based research using music shows promise for capturing the complexity of migrants' lives and health issues in an ethical way. It warrants further investigation in empirical studies in multiple clinical and community settings to understand its processes and impacts on the evidence base for migrant health.

An evaluation of training using singing as a tool for community building in changing societies.

This article investigates lived experiences of participation in a training programme entitled 'Singing as a Tool for Community Building in Changing Societies', facilitated by Musicians Without Borders (MWB) and coordinated in partnership with the Health Research Institute PART-IM (Participatory and Arts-Based Methods for Involving Migrants in Health Research) research cluster at the University of Limerick. The aim of this qualitative study is to enhance understanding of participant experience regarding programme delivery, skill acquisition and community building. The research methodology uses an ethnographic framework. Data collection approaches included participant observation, author fieldnotes, individual semi-structured interviews, and an anonymous, post-training, feedback questionnaire. Thematic analysis of the data resulted in three key themes: the importance of expert facilitation; culturally aware contextualizing and conceptualizing of singing; and professional, whole-person support. These themes were cross-referenced against the research categories of delivery, skill and community building. The findings propose the importance of experienced, expert facilitators, contextualized understandings of diverse artistic traditions delivered by a culturally diverse team, and attention to the whole-person needs of both facilitators and participants. This research enhances understanding of participant experiences of arts-based training programmes in singing and the potential application of this learning for using singing as an arts-based research (ABR) method in migrant health research.

Adolescents with type 1 diabetes can achieve glycemic targets on intensive insulin therapy without excessive weight gain.

INTRODUCTION: The aim of this study was to compare glycemic control and body mass index standard deviation score (BMI-SDS) before and after implementation of intensive insulin therapy using multiple daily injection (MDI) or continuous subcutaneous insulin infusion (CSII) in adolescents with type 1 diabetes (T1D) attending a large multidisciplinary paediatric diabetes clinic in Australia. METHODS: Prospective data were collected for cross-sectional comparison of youth aged 10.0-17.9 years (n = 669) from routine follow-up visits to the diabetes clinic in 2004, 2010, and 2016. Outcome measures included HbA1c; BMI-SDS; and insulin regimen. RESULTS: BMI-SDS remained stable between 2004 to 2016 in the 10-13 and 14-17 year age group (0.7 vs. 0.5, p = .12 and 0.7 vs. 0.7, p = .93, respectively). BMI-SDS was not different across HbA1c groups; <53 mmol/mol (7.0%), 53 to <75 mmol/mol (<7.0 to <9.0%) and >75 mmol/mol (>9.0%) in 2004 (p = .873), 2010 (p = .10) or 2016 (p = .630). Mean HbA1c decreased from 2004 to 2016 in the 10-13 year (69 mmol/mol (8.4%) vs. 57 mmol/mol (7.4%), p = <.001) and 14-17 year group (72 mmol/mol (8.7%) vs. 63 mmol/mol (7.9%), p = <.001). Prior to the implementation of MDI and CSII in 2004 only 10% of 10-13 year olds and 8% of 14-17 year olds achieved the international target for glycemic control (HbA1c 53 mmol/mol [<7.0%]). In 2016, this increased to 31% of 10-13 year olds and 21% of 14-17 year olds. CONCLUSIONS: BMI-SDS did not increase with the change to intensive insulin therapy despite a doubling in the number of adolescents achieving the recommended glycemic target of <7.0% (53 mmol/mol). HbA1c was not associated with weight gain.

Research prioritization in migrant health in Ireland: toward a participatory arts-based paradigm for academic primary care.

Context: People are experts in their own health and need to be involved in health-related decisions, including decisions about what issues should be researched. Underserved communities, such as refugees and migrants, are often excluded from having a voice in relation to their priorities for health research. To avoid tokenistic participation, it is important to develop and test innovative methodologies that are culturally attuned and that can offer 'whole person' (affective, creative and cognitive) engagement. The Participatory Irish World Music Café, first developed in the context of the Irish Refugee Protection Programme in 2015, uses music and singing to develop inclusive, social and creative spaces to support social integration. It has been adapted during COVID-19 as an on-line café. While the café has sustained a strong community presence for five years, its potential adaptation and use to support research health prioritisation processes is unknown. Objective: Explore the use of an on-line, participatory Irish World Music Café to generate research priorities about migrant health in Ireland. Study Design: Participatory health research study co-designed with community partners, using a qualitative ethnographic and arts-based framework. Data from six 1.5 hour on-line cafes includes interviews, focus groups and arts-based documentation generated during the cafes. Analysis follows principles of thematic analysis. Setting or Dataset: Community-based participatory study in Ireland Population studied: Refugees, migrants, primary care providers, national health service planners, artists and academics working in the field of migrant health (n=25) Intervention/Instrument (for interventional studies): n/a Outcome Measures: n/a. Results: Analysis is underway and will describe participants' shared and differential experiences of (i) the research prioritisation sessions with particular attention to their experience of using music and other artistic practices (ii) cultural attunement and whole person engagement and (iii) generating identified research priorities. Conclusions: Findings will inform the evidence base about music as an arts-based method to support a new, inclusive participatory arts-based paradigm for migrants' involvement in research prioritisation. The work will be disseminated in Ireland and in the 53 Member States of the WHO Euro region.

Benchmarking care outcomes for young adults with type 1 diabetes in Australia after transition to adult care.

AIM: To determine advantages conferred by a youth-specific transition clinic model for young adults with type 1 diabetes (T1D) at Westmead Hospital (WH) as compared with Australian registry data. METHODS: Prospectively collected data included age, diabetes duration, visit frequency, post code, BMI, mode of insulin delivery, continuous glucose monitoring, HbA1c, albumin creatinine ratio, BP, retinopathy and diabetic ketoacidosis (DKA) for all WH T1D clinic attendees aged 16-25 between January 2017 and June 2018 (n = 269). Results were compared with data collected during the same time period from 2 separate Australian data registries, one longitudinal (Australasian Diabetes Data Network, ADDN) and one a spot survey (the Australian National Diabetes Audit, ANDA). RESULTS: Across the three cohorts, HbA1c was similar (respectively, WH, ADDN, ANDA; 8.7%[72mmol/mol], 8.7%[72mmol/mol], 8.5%[69mmol/mol]) and HbA1c was significantly higher in young adults <21 years (8.7-8.9%[73-75mmol/mol]) as compared with ≥21 years (8.5%[69mmol/mol], p < .002). In the WH cohort, median interval between visits was shorter than in ADDN (4.5 vs. 9.0 months) and DKA was lower (respectively, 3.6 and 9.2/100 patient years; p < .001). CONCLUSIONS: While suboptimal HbA1c was recorded in all centres, the WH model of care saw increased attendance and reduced admissions with DKA as compared with other Australian adult centres.

Hemoglobin A1c Patterns of Youth With Type 1 Diabetes 10 Years Post Diagnosis From 3 Continents.

OBJECTIVES: Distinct hemoglobin A1c (HbA1c) trajectories during puberty are identified in youth with established type 1 diabetes (T1D). We used data from 3 international registries to evaluate whether distinct HbA1c trajectories occur from T1D onset. METHODS: Participants were <18 years old at diagnosis with at least 1 HbA1c measured within 12 months post diagnosis, along with ≥3 duration-year-aggregated HbA1c values over 10 years of follow-up. Participants from the Australasian Diabetes Data Network (n = 7292), the German-Austrian-Luxembourgian-Swiss diabetes prospective follow-up initiative (Diabetes Patienten Verlaufsdokumentation) (n = 39 226) and the US-based Type 1 Diabetes Exchange Clinic Registry (n = 3704) were included. With group-based trajectory modeling, we identified unique HbA1c patterns from the onset of T1D. RESULTS: Five distinct trajectories occurred in all 3 registries, with similar patterns of proportions by group. More than 50% had stable HbA1c categorized as being either low stable or intermediate stable. Conversely, ∼15% in each registry were characterized by stable HbA1c >8.0% (high stable), and ∼11% had values that began at or near the target but then increased (target increase). Only ∼5% of youth were above the target from diagnosis, with an increasing HbA1c trajectory over time (high increase). This group differed from others, with higher rates of minority status and an older age at diagnosis across all 3 registries (P ≤ .001). CONCLUSIONS: Similar postdiagnostic HbA1c patterns were observed across 3 international registries. Identifying the youth at the greatest risk for deterioration in HbA1c over time may allow clinicians to intervene early, and more aggressively, to avert increasing HbA1c.

Meeting the needs of homeless people attending the emergency department.

Homelessness is on the rise in the UK and, over the past few years, there has been a significant increase in the number of emergency department (ED) attendances and admissions by homeless people. Those attending the ED will often have multiple unmet health, housing and social care needs. While it is not possible to meet all these needs in the ED, emergency nurses should be equipped with the knowledge and skills required to communicate with, refer and signpost patients who are homeless. Under the Homelessness Reduction Act 2017, ED staff have a duty to refer homeless people, with their consent, to local authorities for assistance. This article details the barriers that homeless people may experience when accessing healthcare services and explains how these can be addressed. It also outlines the actions that emergency nurses can take to improve the care of homeless people in the ED at an individual and a systems level.

The use of music as an arts-based method in migrant health research: a scoping review protocol.

There is increasing recognition that people's lived experience needs to be incorporated into health decision-making. This has led to rising imperatives for involving the public in health processes, including research. While there have been significant advances in the field, patterns of exclusion still exist in some areas, including migrant participation in health research. Migration and mobility create challenges around social inclusion and this extends to social and cultural practices used in research. There is an emerging body of literature about improving meaningful, participatory spaces for migrants' involvement in health research using creative tools and techniques that are attuned to cultural diversity. These include the use of arts-based research methods. There is strong evidence for the use of music, particularly singing, as an effective arts-based participatory tool . The goal of this scoping review is to investigate the evidence for the use of music as an arts-based method in migrant health research. Developed by an interdisciplinary team specialising in public and patient involvement; nursing and midwifery; primary health care; and the performing arts, it aims to analyse existing evidence across disciplines that are not usually studied together, identify gaps in current knowledge and use these as a foundation to build effective strategies towards increasing access to and knowledge of participatory, arts-based methods using music in migrant health research. Methods: The protocol for this scoping review follows the guidelines and stages set out in the JBI Reviewer's Manual ( Peters et al., 2017), and by Levac et al, (2010), which build on the methodological framework of Arksey and O'Malley (2005). This incorporates six stages: 1) Identifying the research question; 2) Identifying relevant studies; 3) Study selection; 4) Charting the data; 5) Collating, summarising, and reporting results; and 6) Consultation.

Longitudinal trajectories of BMI z-score: an international comparison of 11,513 Australian, American and German/Austrian/Luxembourgian youth with type 1 diabetes.

BACKGROUND: BMI fluctuations during puberty are common. Data on individual change in BMI from childhood to young adulthood are limited in youth with type 1 diabetes. OBJECTIVES: To compare longitudinal trajectories of body mass index z score (BMIz) from childhood to adolescence across three registries spanning five countries. METHODS: Data sources: T1DX (USA), DPV (Germany/Austria/Luxembourg) and ADDN (Australia). The analysis included 11,513 youth with type 1 diabetes, duration >1 year, at least one BMI measure at baseline (age 8-10 years) and >5 aggregated BMI measures by year of age during follow-up until age 17 years. BMIz was calculated based on WHO charts. Latent class growth modelling was used to identify subgroups following a similar trajectory of BMIz over time. RESULTS: Five distinct trajectories of BMIz were present in the T1DX and ADDN cohorts, while six trajectories were identified in the DPV cohort. Boys followed more often a low/near-normal pattern while elevated BMIz curves were more likely in girls (ADDN; DPV). For T1DX cohort, no sex differences were observed. Comparing the reference group (BMIz ~0) with the other groups during puberty, higher BMIz was significantly associated with older age at T1D onset, racial/ethnic minority and elevated HbA1c (all p<0.05). CONCLUSION: This multinational study presents unique BMIz trajectories in youth with T1D across three continents. The prevalence of overweight and the longitudinal persistence of overweight support the need for close monitoring of weight and nutrition in this population. The international and individual differences likely result from diverse genetic, environmental and therapeutic factors.

Five heterogeneous HbA1c trajectories from childhood to adulthood in youth with type 1 diabetes from three different continents: A group-based modeling approach.

OBJECTIVES: Only a fraction of youth meet established targets for glycemic control; many experience deteriorating control over time. We compared trajectories of hemoglobin A1c (HbA1c) among youth from three trans-continental type 1 diabetes (T1D) registries and identified clinical variables associated with the odds of following increasing vs stable trajectories. RESEARCH DESIGN AND METHODS: Analyses included longitudinal data from 15 897 individuals age 8 to 18 with T1D for at least 2 years and HbA1c measurements in at least 5 years during the observation period. Cohorts were selected from Australasian Diabetes Data Network (ADDN; Australia), German/Austrian/Luxembourgian Diabetes-Patienten-Verlaufsdokumentation initiative (DPV; Germany/Austria/Luxembourga), and the T1D Exchange Clinic Network (T1DX; US) clinic registries. Group-based trajectory modeling and multivariable logistic regression identified unique HbA1c trajectories and their predictors. RESULTS: Five heterogeneous trajectories of glycemic control in each registry were identified: low, intermediate, high stable; intermediate and high increasing. The overall HbA1c level for each trajectory group tended to be lowest in the DPV, higher in the ADDN, and highest in the T1DX. The absolute level of HbA1c and the proportion of individuals within each trajectory varied across registries: 17% to 22% of individuals followed an increasing trajectory. Compared with maintaining a stable trajectory, following an increasing trajectory was significantly associated with ethnic minority status, lower height z-score, higher BMI z-score, insulin injection therapy, and the occurrence of severe hypoglycemia; however, these factors were not consistent across the three registries. CONCLUSIONS: We report the first multinational registry-based comparison of glycemic control trajectories among youth with T1D from three continents and identify possible targets for intervention in those at risk of an increasing HbA1c trajectory.

Young children with type 1 diabetes can achieve glycemic targets without hypoglycemia: Results of a novel intensive diabetes management program.

BACKGROUND: Young children with type 1 diabetes (T1D) present unique challenges for intensive diabetes management. We describe an intensive diabetes program adapted for young children and compare glycemic control, anthropometry, dietary practices and insulin regimens before and after implementation. METHODS: Cross sectional data from children with T1D aged ≥0.5 to <7.0 years attending the John Hunter Children's Hospital (JHCH), Australia in 2004, 2010 and 2016 were compared. Outcome measures were glycemic control assessed by hemoglobin A1c (HbA1c ); severe hypoglycemia episodes; body mass index standard deviation scores (BMI-SDS); diabetes ketoacidosis (DKA) episodes; and insulin regimen-twice daily injections, multiple daily injections, or continuous subcutaneous insulin infusion. RESULTS: Mean HbA1c declined by 12 mmol/mol over the study period (P < .01). The proportion of children achieving a mean HbA1c < 58 mmol/mol increased significantly from 31% in 2004 to 64% in 2010 (P < .01), and from 64% in 2010 to 83% in 2016 (P = .04). The mean BMI-SDS was significantly lower in 2010 when compared with 2004 (P<.01); however, this trend plateaued between 2010 and 2016 (P = .97). Severe hypoglycemia and DKA occurred infrequently. The prevalence of overweight or obesity increased from 2010 to 2016 (P = .03). CONCLUSIONS: The JHCH intensive diabetes management program has resulted in 83% of young children in 2016 achieving target glycemia without an increase in severe hypoglycemia or DKA. Overweight remains a challenge in this population warranting action to reduce weight and protect these children from future obesity-related health risks.

The Australasian Diabetes Data Network: first national audit of children and adolescents with type 1 diabetes.

OBJECTIVES: To assess glycaemic control, anthropometry and insulin regimens in a national sample of Australian children and adolescents with type 1 diabetes. DESIGN: Cross-sectional analysis of de-identified, prospectively collected data from the Australasian Diabetes Data Network (ADDN) registry. SETTING: Five paediatric diabetes centres in New South Wales, Queensland, South Australia, Victoria and Western Australia. PARTICIPANTS: Children and adolescents (aged 18 years or under) with type 1 diabetes of at least 12 months' duration for whom data were added to the ADDN registry during 2015. MAIN OUTCOME MEASURES: Glycaemic control was assessed by measuring haemoglobin A1c (HbA1c) levels. Body mass index standard deviation scores (BMI-SDS) were calculated according to the CDC-2000 reference; overweight and obesity were defined by International Obesity Task Force guidelines. Insulin regimens were classified as twice-daily injections (BD), multiple daily injections (MDI; at least three injection times per day), or continuous subcutaneous insulin infusion (CSII). RESULTS: The mean age of the 3279 participants was 12.8 years (SD, 3.7), mean diabetes duration was 5.7 years (SD, 3.7), and mean HbA1c level 67 mmol/mol (SD, 15); only 27% achieved the national HbA1c target of less than 58 mmol/mol. The mean HbA1c level was lower in children under 6 (63 mmol/mol) than in adolescents (14-18 years; 69 mmol/mol). Mean BMI-SDS for all participants was 0.6 (SD, 0.9); 33% of the participants were overweight or obese. 44% were treated with CSII, 38% with MDI, 18% with BD. CONCLUSIONS: Most Australian children and adolescents with type 1 diabetes are not meeting the recognised HbA1c target. The prevalence of overweight and obesity is high. There is an urgent need to identify barriers to achieving optimal glycaemic control in this population.

Australasian Diabetes Data Network: Building a Collaborative Resource.

Australasia is a region with a high incidence of type 1 diabetes (T1D). There are approximately 140 000 individuals with T1D, and of these 10 000 are children. Although the region covers a huge geographical area, most children with T1D are managed by tertiary academic centers in the major capital cities. Local longitudinal data collection has been in place for several decades in most of these centers, however ongoing national data collection had not been attempted. In 2012, with funding from the Juvenile Diabetes Research Foundation (JDRF) Australian Type 1 Clinical Research Network, a national collaboration was formed to provide ongoing longitudinal collection of T1D patient characteristics and outcomes. The initial phase of this collaboration, known as the Australasian Diabetes Data Network or ADDN, was led by the Australasian Paediatric Endocrine Group (APEG) and thus included only children and adolescents. The next phase, commenced in 2016, will see adult sites added through collaboration with the Australian Diabetes Society (ADS). As most of the initial centers had longitudinal data collection in place the model employed was to establish the transfer and collation of data already collected into a central database. This required the definition of a common data dictionary, ethics and governance procedures and the employment of technology to enable efficient and accurate information transfer and accessibility. The ADDN project received widespread support from the diabetes research community with study investigators representing 20 pediatric centers across the region. The first phase focused on the 5 largest centers and at the end of 2015 these centers were uploading patient data to the ADDN database on a quarterly basis resulting in 5271 patients with 83 506 diabetes visits.

Evaluation of a novel continuous glucose monitoring guided system for adjustment of insulin dosing - PumpTune: a randomized controlled trial.

OBJECTIVE: Retrospective continuous glucose monitoring (CGM) can guide insulin pump adjustments, however, interpretation of data and recommending new pump settings is complex and subjective. We aimed to compare the safety and glycaemic profiles of children after their diabetologist or a novel algorithm (PumpTune) adjusted their insulin pump settings. RESEARCH DESIGN AND METHODS: In a randomized cross-over trial of 22 patients aged 6-14 yr with type 1 diabetes with mean Hba1c 7.4% (57 mmol/mol) using CSII, CGM was used over two periods each of 6.5 d to assess percentage time glucose remained within, above and below 3.9-10.0 mmol/L. Before the start of one period pump settings were adjusted by the patient's diabetologist, and before the other insulin pump settings were adjusted by PumpTune. RESULTS: A total of 63.4% of the sensor glucose levels were within target range with PumpTune settings and 57.4% were within range with the clinician settings (p = 0.016). The time spent above target range with PumpTune was 26.9% and with clinician settings was 33.5% (p = 0.021). The time spent below target range with PumpTune was 9.7% and with clinician settings was 9.2% (p = 0.77). The mean number of times when a sensor glucose level <2.75 mmol/L was recorded with PumpTune settings was 2.9 compared with 3.7 with clinician settings (p = 0.39). There were no serious adverse outcomes and no difference in parent-assessed satisfaction. CONCLUSIONS: Automated insulin pump adjustment with PumpTune is feasible and warrants testing in a larger more varied population over a longer time. In this well-controlled group of children, PumpTune achieved a more favorable glucose profile.

Screening for Celiac Disease in Type 1 Diabetes: A Systematic Review.

BACKGROUND AND OBJECTIVES: Prevalence rates of type 1 diabetes (T1D) and celiac disease (CD) vary from 1.6% to 16.4% worldwide. Screening guidelines are variable and not evidence based. Our aim was to conduct a systematic review of CD in T1D. METHODS: Medline, Embase, and the Cochrane Library were searched. Studies were limited to those in English and in humans. We selected longitudinal cohort studies screening for CD in T1D with at least 5 years of follow-up. Screening rates, characteristics, and prevalence of biopsy-proven CD in people with T1D were extracted. RESULTS: We identified 457 nonduplicate citations; 48 were selected for full-text review. Nine longitudinal cohort studies in 11,157 children and adolescents with 587 cases of biopsy-proven CD met the inclusion criteria. Median follow-up was 10 years (range: 5-18 years). The weighted pooled prevalence of CD was 5.1% (95% confidence interval: 3.1-7.4%). After excluding 41 cases with CD onset before T1D, CD was diagnosed in 218 of 546 (40%) subjects within 1 year, in 55% within 2 years, and in 79% within 5 years of diabetes duration. Two studies (478 cases) reported higher rates of CD in children aged <5 years at T1D diagnosis. The duration of follow-up varied across the included studies. CD screening frequency progressively decreased with increased T1D duration. CONCLUSIONS: Because most cases of CD are diagnosed within 5 years of T1D diagnosis, screening should be considered at T1D diagnosis and within 2 and 5 years thereafter. CD screening should be considered at other times in patients with symptoms suggestive of CD. More research is required to determine the screening frequency beyond 5 years of diabetes duration.