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Background: Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long‐term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end‐of‐life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries. Research Design and Objective: An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention. Findings: Thirty‐eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI. Discussion and Implications: International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources. Patient or Public Contribution: PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript. [ABSTRACT FROM AUTHOR]

Background: The COVID‐19 pandemic has had both a psychological and physiological effect on the human race. For those working in health care, particularly in critical care, the pandemic has put unprecedented strain on staff. Witnessing suffering during crisis in an organizational setting can be a traumatic experience and critical care nurses often risked, not only their own lives, but their psychological well‐being, so that those infected with the virus might have a better chance at survival. Aim: The aim of this study was to explore the challenges to mental health and psychological well‐being experienced by Critical Care Nurses during the COVID‐19 pandemic. Study Design: A longitudinal, qualitative study involving semi‐structured interviews with 54 critical care nurses across 38 hospitals in the United Kingdom and Ireland. Interviews were transcribed verbatim and analysed using thematic analysis. Results: Four key themes were identified which represent the challenges faces by critical care nurses during the COVID‐19 pandemic: Lack of control, Psychological trauma, Unexpected leadership, Public‐political betrayal. Conclusions: While public‐political praise may lead to a short‐term lift in morale for front line workers; where it is not accompanied by practical support in terms of appropriate equipment, leadership, emotional support and renumeration it is likely to be damaging in the longer term. Relevance to Clinical Practice: This study has provided a greater understanding of the factors which affected the well‐being and mental health of critical care nurses during a global pandemic. [ABSTRACT FROM AUTHOR]

The phrase 'in it together' has been used liberally since the outbreak of COVID‐19, but the extent that frontline workers felt 'in it together' is not well understood. Here, we consider the factors that built (or eroded) solidarity while working through the pandemic, and how frontline workers navigated their lives through periods of disconnection. Semi‐structured interviews with 21 frontline workers, across all sectors, were conducted in the United Kingdom and Ireland. The qualitative data were analysed systematically using reflexive thematic analysis. The three themes identified in the data were: (1) Solidarity as central to frontline experiences; (2) Leadership as absent, shallow and divisive: highlighting 'us‐them' distinctions and (3) The rise of 'us' and 'we' among colleagues. Our research offers insights into how frontline workers make sense of their experiences of solidarity and discordance during the first year of the COVID‐19 pandemic, with relevance for government and organizational policy‐makers shaping future conditions for frontline workers. [ABSTRACT FROM AUTHOR]

Background: The involvement of speech and language therapists (SLTs) within paediatric palliative care (PPC) settings has been recognized within the extant literature. However, there is little understanding of SLT's specific roles and practices when working with this vulnerable cohort of children and their families. As part of a larger body of work to develop consensus‐based recommendations for SLTs working in PPC, it is important to investigate demographic and caseload characteristics. Aims: This exploratory study aimed to gather previously undocumented international demographic data pertaining to SLT service provision, caseload and training in PPC. Additionally, it sought to ascertain the current treatment and assessment approaches of SLTs, and if variations exist in beliefs and practices. Methods & Procedures: An anonymous cross‐sectional survey was designed and reported according to the Checklist for Reporting Results of Internet E‐Surveys (CHERRIES). The online survey consisted of 40 items spanning four domains: (1) demographic information, (2) caseload information, (3) service provision and (4) training and education. SLTs from Australia, Canada, New Zealand, the UK, Ireland and the United States were recruited using a purposive snowball sampling approach. Descriptive analysis of closed‐ended survey responses and content analysis of open‐ended responses are presented. Outcomes & Results: A total of 52 respondents completed the survey. SLTs worked in a variety of PPC settings, with patients of varying age and disease groups. Over 50% of participants reported working in PPC for ≤ 4 years. Genetic disorders (34%), oncology (27%) and neurological conditions (21%) made up a significant portion of respondents' caseloads. Reported treatments and assessment approaches used by SLTs are not unique to a PPC population. Barriers and enablers for practice were identified. A portion of participants did not feel trained and prepared to assess (19.2%) or treat (15.4%) PPC clients. Conclusions & Implications: This study confirms that SLTs internationally have a role in the management of communication and swallowing impairments in a PPC context. However, whether current training and resources adequately support SLTs in this role remains questionable. This paper helps to provide SLTs, administrators, professional associations and tertiary institutions with foundational data to help inform workforce planning, advocacy efforts and training priorities. What this paper addsWhat is already known on the subjectThe published multidisciplinary literature has identified that SLTs have a role in PPC. However, there has been no targeted research investigating the professional characteristics of clinicians in this context, nor any detailed information regarding associated clinician beliefs or management approaches.What this paper adds to existing knowledgeThis study is a snapshot of attributes, practice patterns and beliefs of SLTs who work with a PPC population. It highlights SLT perspectives of education and training, as well as meta‐perceptions of themselves within the multidisciplinary team.What are the potential or actual clinical implications of this work?Data presented in this paper will help to enable SLTs, organizations and associations to augment service provision and determine future professional development priorities within the field of PPC. [ABSTRACT FROM AUTHOR]

Background: Optimizing quality of life (QoL) remains the central tenet of care in patients with incurable cancer; however, determinants of QoL are not clear. The objective of the current study was to examine which factors influence QoL in patients with incurable cancer.Methods: A multicenter study of adult patients with advanced cancer was conducted in Ireland and the United Kingdom between 2011 and 2016. Data were collected from patients at study entry and included patient demographics, Eastern Cooperative Oncology Group performance status (ECOG-PS), nutritional parameters (the percentage weight loss [%WL]), muscle parameters assessed using computed tomography images (skeletal muscle index and skeletal muscle attenuation), inflammatory markers (modified Glasgow Prognostic score [mGPS]), and QoL data (the European Organization for Research and Treatment Quality-of-Life Questionnaire C-30). The relation between clinical, nutritional, and inflammatory parameters with QoL was assessed using the Spearman rank correlation coefficient and multivariate binary logistic regression. Components of the European Organization for Research and Treatment Quality-of-Life Questionnaire C-30 (physical function, fatigue, and appetite loss) and summary QoL scores were mean-dichotomized for the logistic regression analyses.Results: Data were available for 1027 patients (51% men; median age, 66 years). Gastrointestinal cancer was most prevalent (40%), followed by lung cancer (26%) and breast cancer (9%). Distant metastatic disease was present in 87% of patients. The %WL, ECOG-PS, and mGPS were significantly correlated with deteriorating QoL functional and symptom scales (all P < .001). On multivariate regression analysis, >10% WL (odds ratio [OR], 2.69; 95% CI, 1.63-4.42), an ECOG-PS of 3 or 4 (OR, 14.33; 95% CI, 6.76-30.37), and an mGPS of 2 (OR, 1.58; 95% CI, 1.09-2.29) were independently associated with poorer summary QoL scores. These parameters were also independently associated with poorer physical function, fatigue, and appetite loss (all P < .05). Low skeletal muscle attenuation was independently associated with poorer physical functioning (OR, 1.67; 95% CI, 1.09-2.56), but muscle parameters were not independently associated with fatigue, appetite loss, or QoL summary scores.Conclusions: The current findings indicate that QoL is determined (at least in part) by WL, ECOG-PS, and the systemic inflammatory response in patients with advanced cancer. Identifying early predictors of poor QoL may allow the identification of patients who may benefit from early referral to palliative and supportive care, which has been shown to improve QoL. [ABSTRACT FROM AUTHOR]

Aims To identify factors that influence lack of engagement of young adults with Type 1 diabetes (aged 13-21 years) with structured diabetes education ( SDE) to inform and broaden the reach of future SDE. Methods A quantitative, cross-sectional survey was undertaken of 227 young people with Type 1 diabetes drawn from 11 health trusts across Northern Ireland and England, deemed to be representative of the wider population. Participants were asked to complete a questionnaire exploring non-attendance, along with the Diabetes Care Profile, the Diabetes Empowerment Scale (Short Form), the Diabetes Knowledge Test and the 12-item General Health Questionnaire. Demographic, health and diabetes-specific variables including HbA1c were also collected. Results The five most commonly cited reasons for non-attendance were 'Had other things to do' (68.3%), 'No time' (62.2%), 'Could not get time off school/college or work' (60.8%), 'Learnt about diabetes from other sources' (55.5%) and 'Feel able to cope on own' (52.9%). Conclusions Greater emphasis is required on communication with young people about the benefits of SDE. In addition, efforts need to be directed to making diabetes education more accessible without losing the quality of structured programmes. [ABSTRACT FROM AUTHOR]

Objectives To design and evaluate the effectiveness of a pre-notification leaflet about research to increase recruitment to a randomized controlled trial (RCT). Methods A methodological, two-arm, RCT was conducted, embedded within an existing cohort RCT (REFORM). Participants were randomized for the embedded trial, using a 1:2 ratio (intervention : control) before being randomized for REFORM. Controls received a trial recruitment pack. The intervention group received an additional pre-notification leaflet 2-3 weeks before the recruitment pack. Primary and secondary analyses were conducted using relative risk, the Cox proportional hazards model and incremental cost-effectiveness ratios. Results Of the 1436 intervention group participants, 73 (5.1%) were randomized into the REFORM trial compared with 126 (4.4%) of the 2878 control group participants. The associated relative risk (1.16) was not statistically significant [95% confidence interval (CI) 0.88-1.56]. Return rate was not significantly increased (relative risk 1.10, 95% CI 0.92-1.28) nor time to return decreased (hazard ratio: 1.11, 95% CI 0.93-1.33). Incremental cost-effectiveness ratios indicated the intervention may be cost-effective if the true estimate of effect was close to the upper bound of the associated 95% CI. Conclusion Pre-notification for potential trial participants demonstrated a small difference to randomization (0.7% difference) and return rates (1.1% difference) in favour of the intervention. Results should however be interpreted with caution as CIs for these estimates cross the point of no effect. Nevertheless, this research enhances existing evidence for pre-notification to increase recruitment rates, with further development and assessment of this potentially cost-effective intervention being recommended. [ABSTRACT FROM AUTHOR]

Background Despite evidence that even mild dehydration is associated with various morbidities, water intake estimates in free-living populations are lacking. The present study aimed to estimate water intakes and dietary sources in a nationally representative sample of the Irish adult population. Methods A 4-day semi-weighed food record was used to collect dietary intake data from 1500 free-living adults aged 18-90 years in the Irish National Adult Nutrition Survey ( NANS) (2008-2010) from which water intake was estimated. To enable fluid intake estimation, additional questions on how water and milk were consumed were incorporated. Total water intake was calculated as drinking water plus water from other beverages and food moisture. Results The mean ( SD) daily total water intake for Irish adults was 2.31 (0.92) L day-1 [males 2.52 (1.00) L day-1; females 2.09 (0.79) L day-1]. Intakes were lowest in elderly adults, as well as in those with less education, a lower social class, less energy expenditure and a higher body mass index and body fat percentage. In total, 67% of water came from beverages and 33% came from food moisture. Alcoholic beverages and teas individually contributed to total water intake in amounts similar to the drinking water contribution. Conclusions These data may be used as a foundation for further research in the area of the effect of under consumption of water on health outcomes to guide public health messages regarding adequate water intakes. [ABSTRACT FROM AUTHOR]