Being a parent of a child with Down's arthritis: an interpretative phenomenological analysis

Purpose To explore the parental impact and experiences of caring for a child with Down’s arthritis (DA), an aggressive, erosive form of arthritis affecting children with Down syndrome. Materials and methods Ten mothers of children with DA were interviewed via telephone. Interviews were guided using a semi-structured non-directive topic guide and ranged from 17 to 242 minutes in duration. Interpretative phenomenological analysis was the method of analysis. Results Three superordinate themes were identified: “Struggle for Help,” “Mothers Know Best,” and “Daily Impacts.” Common challenges included issues around child pain, communication, and challenges in accessing diagnoses and relevant healthcare services. Parents portrayed a reality characterised by ongoing struggles, particularly parents of nonverbal children and those living further from paediatric rheumatology services. Connecting with other parents of children with DA provided a vital source of emotional and informational support. Conclusions Findings provide novel insight into the experience of being mother of a child with DA, highlighting regional healthcare disparities, the need for upskilling of healthcare professionals, and for increased public awareness. Further research is needed to better understand the impact of DA on fathers and siblings. Findings can contribute to development and provision of supports to children with DA and their families.Output Status: Forthcoming/Available Onlin

Prevalence and Impact of Dysmenorrhea Among University Students in Ireland

Objective Primary dysmenorrhea (PD), or painful menstruation, is a common gynecological condition that can cause intense pain and functional disability in women of reproductive age. As a nonmalignant condition, PD is relatively understudied and poorly managed. The purpose of this study was to estimate the prevalence and impact of PD among third-level students in Ireland. Design A cross-sectional observational design was used. Methods Students (n = 892; age range = 18–45 years) completed an online survey on menstrual pain characteristics, pain management strategies, pain interference, and pain catastrophizing. Results The prevalence of PD was 91.5% (95% confidence interval = 89.67–93.33). Nonpharmacological management strategies were most popular (95.1%); of these, heat application (79%), rest (60.4%), hot shower/bath (40.9%), and exercise (25.7%) were most common. Perceived effectiveness of these methods varied between participants. Analgesic use was also common (79.5%); of these, paracetamol was most used (60.5%) despite limited perceived effectiveness. Pain catastrophizing was a significant predictor of variance in both pain intensity and pain interference scores such that those with higher pain catastrophizing scores reported more intense pain and greater interference with daily activities and academic demands. Conclusions This article presents the first investigation into PD among third-level students in Ireland. Poorly managed menstrual pain may impact functional ability across several domains. Future research should focus on improving menstrual pain management education and support and promoting menstrual health literacy for women affected by PD

Prevalence of treatment-resistant hypertension after considering pseudo-resistance and morbidity: a cross-sectional study in Irish primary care

peer-reviewedBackground To confirm treatment-resistant hypertension (TRH), ambulatory blood pressure measurement (ABPM) must exclude white-coat hypertension (WCH), three or more medications should be prescribed at the optimal doses tolerated, and non-adherence and lifestyle should be examined. Most previous studies have not adequately considered pseudo-resistance and merely provide an apparent TRH (aTRH) prevalence figure. Aim To conduct a cross-sectional study of the prevalence of aTRH in general practice, and then consider pseudo-resistance and morbidity. Design and setting With support, 16 practices ran an anatomical therapeutic chemical (ATC) drug search, identifying patients on any possible hypertensive medications, and then a search of individual patients' electronic records took place. Method ABPM was used to rule out WCH. The World Health Organization-defined daily dosing guidelines determined adequate dosing. Adherence was defined as whether patients requested nine or more repeat monthly prescriptions within the past year. Results Sixteen practices participated (n = 50 172), and 646 patients had aTRH. Dosing was adequate in 19% of patients, 84% were adherent to medications, as defined by prescription refill, and 43% had ever had an ABPM. Using a BP cut-off of 140/90 mmHg, the prevalence of aTRH was 9% (95% confidence interval [CI] = 9.0 to 10.0). Consideration of pseudo-resistance further reduced prevalence rates to 3% (95% CI = 3.0 to 4.0). Conclusion Reviewing individual patient records results in a lower estimate of prevalence of TRH than has been previously reported. Further consideration for individual patients of pseudo-resistance additionally lowers these estimates, and may be all that is required for management in the vast majority of cases.PUBLISHEDpeer-reviewe

A Hybrid of Optical Remote Sensing and Hydrological Modelling Improves Water Balance Estimation

Declining gauging infrastructure and fractious water politics have decreased available information about river flows globally. Remote sensing and water balance modelling are frequently cited as potential solutions, but these techniques largely rely on these same in-decline gauge data to make accurate discharge estimates. A different approach is therefore needed, and we here combine remotely sensed discharge estimates made via at-many-stations hydraulic geometry (AMHG) and the PCR-GLOBWB hydrological model to estimate discharge over the Lower Nile. Specifically, we first estimate initial discharges from 87 Landsat images and AMHG (1984-2015), and then use these flow estimates to tune the model, all without using gauge data. The resulting tuned modelled hydrograph shows a large improvement in flow magnitude: validation of the tuned monthly hydrograph against a historical gauge (1978-1984) yields an RMSE of 439 m3/s (40.8%). By contrast, the original simulation had an order-of-magnitude flow error. This improvement is substantial but not perfect: tuned flows have a one-to two-month wet season lag and a negative baseflow bias. Accounting for this two-month lag yields a hydrograph RMSE of 270 m3/s (25.7%). Thus, our results coupling physical models and remote sensing is a promising first step and proof of concept toward future modelling of ungauged flows, especially as developments in cloud computing for remote sensing make our method easily applicable to any basin. Finally, we purposefully do not offer prescriptive solutions for Nile management, and rather hope that the methods demonstrated herein can prove useful to river stakeholders in managing their own water

Designing an e-learning tool to support health practitioners caring for patients taking multiple medications

Background: Population ageing and improvements in healthcare mean the number of people living with two or more chronic conditions, or ‘multimorbidity’, is rapidly increasing. This presents a challenge to current disease-specific care delivery models. Adherence to prescribed medications appears particularly challenging for individuals living with multimorbidity, given the often-complex drug regimens required to treat multiple conditions. Poor adherence is associated with increased mortality, as well as wasted healthcare resources. Supporting medication adherence is a key priority for general practitioners (GPs) and practice nurses as they are responsible for much of the disease counselling and medication prescribing associated with chronic illnesses. Despite this, practical resources and training for health practitioners on how to promote adherence in practice is currently lacking. Informed by the principles of patient and public involvement (PPI), the aim of this research was to develop a patient informed e-learning resource to help GPs and nurses support medication adherence. Method: Utilising collective intelligence (CI) and scenario-based design (SBD) methodology, input was gathered from key stakeholders in medication adherence to gain insights into barriers to supporting people with multimorbidity who are receiving polypharmacy, strategies for overcoming these barriers, and user needs and requirements to inform the design of the e-learning tool. Results: In total, 67 barriers to supporting people who are taking multiple medications were identified across 8 barrier categories. 162 options for overcoming the identified barriers were then generated. This data was used in the design of a flexible e-learning tool for continuous professional development, that has been integrated into general practice and clinical education programmes as a supportive tool. Conclusions: Using CI and SBD methodology was an effective way of facilitating collaboration, idea-generation, and the co-creation of design solutions amongst a diverse group of stakeholders. This approach could be usefully applied to address other complex healthcare-related challenges

Satellite-supported flood forecasting in river networks: a real case study

Satellite-based (e.g., Synthetic Aperture Radar [SAR]) water level observations (WLOs) of the floodplain can be sequentially assimilated into a hydrodynamic model to decrease forecast uncertainty. This has the potential to keep the forecast on track, so providing an Earth Observation (EO) based flood forecast system. However, the operational applicability of such a system for floods developed over river networks requires further testing. One of the promising techniques for assimilation in this field is the family of ensemble Kalman (EnKF) filters. These filters use a limited-size ensemble representation of the forecast error covariance matrix. This representation tends to develop spurious correlations as the forecast-assimilation cycle proceeds, which is a further complication for dealing with floods in either urban areas or river junctions in rural environments. Here we evaluate the assimilation of WLOs obtained from a sequence of real SAR overpasses (the X-band COSMO-Skymed constellation) in a case study. We show that a direct application of a global Ensemble Transform Kalman Filter (ETKF) suffers from filter divergence caused by spurious correlations. However, a spatially-based filter localization provides a substantial moderation in the development of the forecast error covariance matrix, directly improving the forecast and also making it possible to further benefit from a simultaneous online inflow error estimation and correction. Additionally, we propose and evaluate a novel along-network metric for filter localization, which is physically-meaningful for the flood over a network problem. Using this metric, we further evaluate the simultaneous estimation of channel friction and spatially-variable channel bathymetry, for which the filter seems able to converge simultaneously to sensible values. Results also indicate that friction is a second order effect in flood inundation models applied to gradually varied flow in large rivers. The study is not conclusive regarding whether in an operational situation the simultaneous estimation of friction and bathymetry helps the current forecast. Overall, the results indicate the feasibility of stand-alone EO-based operational flood forecasting

Lockdown during the COVID-19 pandemic: impact on infants with pyloric stenosis

The COVID-19 pandemic has posed challenges for the delivery of healthcare for infants with disruption to 6-week health checks and health visitor services.1 An area of particular concern is late presentation to the hospital.2 However, current data do not offer an objective picture of how significant a problem this may be, with other reports showing low rates of delays in presentation.3 Infantile hypertrophic pyloric stenosis (IHPS) is a common, non-infective infantile condition with a predictable clinical course and therefore a good indicator condition to assess for delays in presentation. We aimed to assess whether infants with IHPS presented later during ‘lockdown’ compared with the same period the preceding year

Investigating and evaluating evidence of the behavioural determinants of adherence to social distancing measures – A protocol for a scoping review of COVID-19 research

Background: The WHO has declared the outbreak of coronavirus disease 2019 (COVID-19) as a pandemic. With no vaccine currently available, using behavioural measures to reduce the spread of the virus within the population is an important tool in mitigating the effects of this pandemic. As such, social distancing measures are being implemented globally and have proven an effective tool in slowing the large-scale spread of the virus. Aim: This scoping review will focus on answering key questions about the state of the evidence on the behavioural determinants of adherence to social distancing measures in research on COVID-19. Methods: A scoping review will be conducted in accordance with guidelines for best practice. Literature searches will be conducted using online databases and grey literature sources. Databases will include Medline, Web of Science, Embase and PsycInfo, alongside relevant pre-print servers. Grey literature will be searched on Google Scholar. Screening, data extraction and quality appraisal will be conducted by members of the research team, with any discrepancies resolved by consensus discussion. Quality appraisal will be conducted using the Cochrane’s ROBINS-I tool, the Cochrane Risk of Bias tool, and the JBI Critical Appraisal Checklist where appropriate. Results will be analysed by mapping findings onto the Theoretical Domains Framework and visualising characteristics of the included studies using EviAtlas. This scoping review is pre-registered with Open Science Framework. Conclusions: The results of this study may facilitate the systematic development of behavioural interventions to increase adherence to social distancing measures

Identifying and addressing psychosocial determinants of adherence to physical distancing guidance during the COVID-19 pandemic – project protocol

Optimising public health physical distancing measures has been a critical part of the global response to the spread of COVID-19. Evidence collected during the current pandemic shows that the transmission rate of the virus is significantly reduced following implementation of intensive physical distancing measures. Adherence to these recommendations has been poorer than adherence to other key transmission reduction behaviours such as handwashing. There are a complex range of reasons that are likely to predict why people do not or only partially adhere to physical distancing recommendations. In the current project we aim to address the following research questions: (1) What are the psychosocial determinants of physical distancing for the general public and for key socio-demographic sub-groups (e.g., young adults, older adults, etc.)?; (2) Do current Government of Ireland COVID-19 physical distancing communications address the determinants of physical distancing?; and (3) How can communications be optimised and tailored to sub-groups to ensure maximum adherence to guidelines? These will be addressed by conducting three work packages (WPs). In WP1, we will work closely with the iCARE international study, which includes a large online survey of public responses to measures established to reduce and slow the spread of COVID-19, including physical distancing. We will analyse Irish data, comparing it to data from other countries, to identify the key psychosocial determinants of physical distancing behaviour. This will be followed by a qualitative study to explore in depth the barriers and facilitators of physical distancing behaviour among the Irish public (WP2). In WP3, we will conduct a content analysis and evidence mapping of current government messaging around physical distancing, to ensure the findings from this research feed into the development of ongoing communication and future messaging about physical distancing

State versus Trait: Validating State Assessment of Child and Parental Catastrophic Thinking about Child Pain

Pain catastrophizing has emerged as one of the most robust predictors of child pain outcomes. Although assessments of state (i.e., situation-specific) pain catastrophizing in children and parents are often used, their psychometric properties are unknown. This study aimed to assess factor structure, reliability and predictive validity of state versions of Pain Catastrophizing Scales for children (PCS-C State) and parents (PCS-P State) relative to corresponding trait versions for child and parental pain-related outcomes. Data were pooled from 8 experimental pain studies wherein child and/or parent state catastrophizing (measured immediately before application of a pain stimulus) and trait catastrophizing were assessed in community-based samples of children aged 8–18 years (N=689) and their parents (N=888) in Dutch or English. Exploratory factor analyses were conducted to examine the underlying factor structure of the PCS-P/PCS-C State, revealing a single factor solution that explained 55.53% of the variance for children and 49.72% for parents. Hierarchical linear regression analyses were used to examine relative influence of state versus trait catastrophizing on child and parent pain-related outcomes. Child and parent state catastrophizing were significantly associated with child pain intensity, child state anxiety and parental distress. State catastrophizing scores showed stronger associations than trait scores for most outcomes