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‘Living well’ is an important concept across national dementia strategies. Qualitative research has contributed to understanding of living well for people with dementia. Longitudinal qualitative approaches, though fewer, can explore potential changes in accounts of living well, psychological coping and adapting to dementia, and if/how people with dementia maintain continuity in their lives. This longitudinal qualitative study aims to gauge what is important for ‘living well’ with mild-to-moderate dementia and whether this changes over time in a group of older people with mild-to-moderate dementia living at home. Semi-structured, qualitative interviews with 20 people with dementia from the IDEAL cohort study were conducted in 2017 and again one year later then thematically analysed. The overarching narrative was largely that of continuity and adaptation, with incremental not disruptive change. Continuing participation and meaningful occupation were important to maintaining living well over time; individuals pursued new as well as previous interests. As a key psychological coping strategy to support continuity in their lives, individuals emphasised their capabilities to maintain activities in spite of dementia, compartmentalising areas that had become more challenging. Maintaining social networks and accommodating changes in social relationships were also central to living well, including managing the psychological impacts of changes in spousal relationships. People in the earlier stages of dementia emphasise continuity and their capabilities, reporting change over time only in certain aspects of their lives. However, small, incremental changes in their social relationships and opportunities for meaningful occupation may still afford key areas for supporting capability to ‘live well’.
Children with CHD are at increased risk for neurodevelopmental disabilities and neuropsychological impairments throughout their life span. The purpose of this report is to share our experience building a sustainable, novel, inpatient, interdisciplinary Neurocardiac Critical Care Program to mitigate risks and optimize outcomes during the ICU stay.
Material and methods:
A descriptive review was chosen to identify meaningful characteristics, challenges and lessons learned related to the establishment, expansion of and sustainability of Neurocardiac Critical Care Program in a 26-bed pediatric cardiac ICU.
Results:
We successfully launched, expanded, and sustained an interdisciplinary Neurocardiac Critical Care Program. Here, we share the foundation, framework, challenges, and lessons learned as we established and sustained the Neurocardiac Critical Care Program. The key elements of our program are (1) consistent engagement by pediatric neurologists in the cardiac ICU, (2) comprehensive education initiatives, (3) evidence-based clinical practice changes, and (4) quality improvement and research projects.
Discussion:
The development of a pediatric Neurocardiac Critical Care Program is feasible and sustainable. This program was informed by recent research related to perioperative and psychosocial risk factors that impact brain development and neurodevelopmental outcomes in this vulnerable population. By aligning our efforts, our multidisciplinary team is helping shift the paradigm in pediatric cardiac critical care to actively manage complex heart disease, while simultaneously and proactively mitigating risks to the developing brain and family unit.
Adolescence and young adulthood are sensitive developmental periods to environmental influences. Investigating pre-emptive measures against stressors, such as those associated with the COVID-19 pandemic, on mental health is crucial. We aimed to synthesize evidence on pre-pandemic resilience factors shaping youth mental health outcomes during this period. For this pre-registered systematic review, we searched seven databases for longitudinal studies of youth populations affected by the COVID-19 pandemic, assessing a priori defined resilience factors at the individual, family, or community level before the pandemic. Studies required validated mental health or wellbeing measures collected both before and during the pandemic. Study quality was assessed using the corresponding NIH Quality Assessment Tool. From 4,419 unique records, 32 studies across 12 countries were included, using 46 distinct resilience measures. Due to the heterogeneity of study designs, we applied a narrative synthesis approach, finding that resilience factors were generally associated with better mental health outcomes both prior to and during the pandemic. However, most factors did not mitigate pandemic-related mental health effects. Nonetheless, family-level resilience factors emerged as promising under specific conditions. Study quality was generally fair, with concerns in resilience assessment and sampling quality. Future research should prioritize rigorous study designs and comprehensive resilience assessments.
Reducing inequalities in preconception health and care is critical to improving the health and life chances of current and future generations. A hybrid workshop was held at the 2023 UK Preconception Early and Mid-Career Researchers (EMCR) Network conference to co-develop recommendations on ways to address inequalities in preconception health and care. The workshop engaged multi-disciplinary professionals across diverse career stages and people with lived experience (total n = 69). Interactive discussions explored barriers to achieving optimal preconception health, driving influences of inequalities and recommendations. The Socio-Ecological Model framed the identified themes, with recommendations structured at interpersonal (e.g. community engagement), institutional (e.g. integration of preconception care within existing services) and environmental/societal levels (e.g. education in schools). The co-developed recommendations provide a framework for addressing inequalities in preconception health, emphasising the importance of a whole-systems approach. Further research and evidence-based interventions are now needed to advance the advocacy and implementation of our recommendations.
Autistic women are at high risk of developing restrictive eating disorders (REDs), such as anorexia nervosa.
Aims
This study provides an overview of the clinical characteristics of autistic women with REDs to (i) enhance understanding of increased risk, and (ii) support the identification of autistic women in eating disorder services.
Method
We compared self-reported autistic and disordered eating characteristics of: autistic participants with REDs (Autism + REDs; n = 57); autistic participants without REDs (Autism; n = 69); and women with REDs who are not autistic (REDs; n = 80). We also included a group of women with high autistic traits (HATs) and REDs, but no formal autism diagnosis (HATs + REDs; n = 38).
Results
Autism + REDs participants scored similarly to Autism participants in terms of autistic characteristics and to REDs participants in terms of experiencing traditional disordered eating symptoms. Autism + REDs participants were distinguished from both groups by having more restricted and repetitive behaviours and autism-specific eating behaviours related to sensory processing, flexibility and social differences. HATs + REDs participants showed a similar pattern of scores to Autism + REDs participants, and both also presented with high levels of co-occurring mental health difficulties, particularly social anxiety.
Conclusion
The presentation of autistic women with REDs is complex, including both traditional disordered eating symptoms and autism-related needs, as well as high levels of co-occurring mental health difficulties. In eating disorder services, the REDs presentation of autistic women and those with HATs should be formulated with reference to autism-specific eating behaviours and co-occurring difficulties. Treatment adaptations should be offered to accommodate autistic characteristics and related needs.
Translational science (TS) teams develop and conduct translational research. Academic TS teams can be categorized under three constituency groups: trainees and faculty, clinical research professionals (CRP), and community partners. Our study objectives were to define individual and team competencies of these three constituency groups during their career life course and determine relative importance and the level of mastery of each of the competencies needed at different stages of their life course.
Methods:
Each group was composed of experts for their constituency group. We applied individual and team competencies in TS teams by Lotrecchiano et al. (2020) as a starting point for structured expert discussions following a modified Delphi approach that we adapted based on the emergent needs and insights per constituency group.
Results:
The degree of relevance and level of mastery for individual and team competencies varies for trainees and faculty members across the career life course based on opportunities provided and relative importance at that career stage. However, CRPs enter TS teams at various career stages with fundamental, skilled, or advanced levels of smart skills that may or may not be contextual to their role. Community partners equally possess and develop competencies in a non-linear and contextual fashion that are required to facilitate constructive, bi-directional collaboration with other members of TS teams.
Conclusions:
Team science competencies across the career life course do not develop linearly among different constituency groups and require an adaptive framework to enhance TS team effectiveness.
Otinel, composed in the late twelfth or early thirteenth century, is the earliest of the three poems included in this volume. It takes place in a sort of interval during Charles's expeditions into Spain, between the conquest of Pamplona and the disaster at Roncevaux, during which he has returned temporarily to Paris. The poem opens with the arrival of a messenger at Charlemagne's court, bearing a challenge from the Emir Garsile who, during this same interval, had ventured into Lombardy, capturing several cities and setting up headquarters in Atilie. We soon learn that the messenger, Otinel, is a nephew of the giant Fernagu, who was slain by Roland during one of Charlemagne's earlier expeditions. This episode is recounted in the Pseudo-Turpin Chronicle, so-called because the author claimed to be the Archbishop Turpin who fought alongside Charlemagne and the twelve peers in the Song of Roland.3 The Chronicle tells of four fictitious campaigns by the emperor into Spain against the Muslims in the years preceding Roncevaux. In the fourth and final of these campaigns, Roland succeeds in killing the giant Fernagu after a threeday battle.
When Otinel arrives in Paris, he insolently challenges Charlemagne on behalf of Garsile to convert to Islam or lose his lands. An impetuous French knight attacks him and is quickly beheaded by Otinel. He next challenges Roland to single combat to avenge the death of Fernagu, his uncle. In preparing for combat, Otinel is presented his arms and armor by Charlemagne's beautiful daughter, Belissent. The fight between the two champions of their respective religions is going badly for Roland until the Christian God intervenes and sends the Holy Spirit in the form of a dove to Otinel, who has a miraculous change of heart and converts to Christianity. He is baptized in the cathedral of Notre-Dame in Paris, made a peer, offered Charlemagne's daughter Belissent to be his wife, and promised Lombardy as dowry. Our poem then presents a new foreign excursion by the French troops, this time into Lombardy, where the Emir Garsile, having sacked Rome, is ensconced in his fortified city of Atilie.
The three poems presented in this volume are representatives of the medieval Romance epic or chansons de geste, which were traditional heroic tales that flourished from the late eleventh through the fifteenth centuries. Chansons de geste are long narrative poems in monorhymed or assonanced stanzas of unequal length, called laisses. The poems themselves ranged from as few as 870 lines (Voyage/Pilgrimage of Charlemagne) to over 34,000 (Lion de Bourges), and the laisses could be as short as three or four lines, or over a thousand. The word geste refers to the subject matter of the poems – the heroic deeds of an individual hero or the collective deeds of a family or clan. Chanson suggests a musical dimension for the genre. Although no extant chanson de geste manuscripts contain musical notation, evidence from textual and iconographical sources suggests that the earliest such poems were performed to the accompaniment of a vielle, which is a type of medieval fiddle. The origins of the genre are controversial, but they most likely began as oral poems recited or sung by professional entertainers known as jongleurs, then eventually came to be written down, beginning in the late eleventh century. The first written texts may have been taken directly from oral performances, but the later poems are essentially written products designed to imitate the formulaic style of the oral tradition.
Despite being set generally in the eighth and ninth centuries, at the height of the Carolingian empire, the poems are highly politically engaged and reflect the feudal realities of the time when they were first written down. The chansons de geste were instruments of both religious and social propaganda. This was notably the time of the great Crusades to the Holy Land (1095– 1291), led by powerful barons and the occasional king, so that conflicts between Christians and Muslims are a central feature. The crusading ethos called upon the European warrior aristocracy to defend Christendom against the military and cultural forces of Islam, and chief among those defenders was the Holy Roman Emperor Charlemagne (r. 768–814), who actually spent much of his reign fighting the Saxons in the north and the Muslims in Italy and Spain.
In 1912, two short epic poems in Old Occitan were discovered in a latefourteenth- or early-fifteenth-century register of deeds in Apt (Vaucluse) in present-day southern France. No titles are given in the manuscript, but the poems have generally been known as Roland à Saragosse and Ronsasvals since their first edition by Mario Roques. The latter text will not concern us here, as it is a compact version of the battle of Roncevaux itself. The 1409-line Roland, on the other hand, recounts an episode directly preceding the legendary battle, thus joining the group of prequels gathered in this volume. We acknowledge that the title Roland à Saragosse is not entirely satisfactory: Roland spends very little time in Saragossa, and his companion Olivier is arguably presented in a more favorable light. Hans-Erich Keller even suggested that the poem be named for Olivier. Nonetheless, to avoid confusion, we have chosen to retain the conventional title, which we translate as Roland at Saragossa to convey the hero's position in, around, and in front of “la gran cieutat valhant” (the mighty and worthy city, line 284).
The poem's origins – and indeed the origins of Occitan epic poetry itself – have long been a matter of scholarly debate. Very few Occitan epics have come down to us, and most of the surviving texts are incomplete or fragmentary. Based on careful study of proper names and toponyms, some scholars have concluded that the Romance epic genre originated in the Occitan-speaking south of France. Evidence supporting this hypothesis includes an allusion to a Song of Roland in the fragmentary twelfth-century Canso d’Antioca; abundant references to epic heroes in troubadour lyric; and the origin of the Roland–Olivier pairing: the name “Olivier” first appeared in the south during the eleventh century, followed by the names Roland and Olivier given to brothers, again in the south during the late eleventh century. Other scholars, pointing to the absence of any surviving Occitan epic before the Oxford Roland (the earliest version extant), conclude that the Occitan texts imitate or derive from French models.5 While we cannot trace the precise filiation of Roland at Saragossa, we do know that a version of Roland's pre-Roncevaux exploits was circulating by the late twelfth century.
As is the case for most chansons de geste, it is difficult to establish a precise date for the composition of Gui of Burgundy. Scholars have agreed on the beginning of the thirteenth century, perhaps around 1211, since the manuscript of Tours mentions a marchois – a coin that was not minted before this date. More important, another chanson, written around 1230–34, alludes to the gist of the Gui of Burgundy story, thus situating our text before these dates, in the first quarter of the thirteenth century.
The same uncertainty remains about a possible historical background. Several hypotheses have been proposed, but none is verifiable. One suggests that the Gui of Burgundy legend might have to do with the powerful family of Burgundy that fought several crusades against the Muslims during the eleventh and twelfth centuries. One Gui of Burgundy did exist. He was the great-grandson of Richard I of Normandy. He became pope Calixtus II and was regent for his nephew, the future king of Castile and León in Spain. Interesting as it may be, such a reference is vague and inconclusive. All we can say, at this time, is that the chanson reflects the skirmishes against the Islamic enemy in Spain illustrated by many epic texts and especially those involving Charlemagne and his peers.
When the story begins, Charlemagne has been campaigning in Spain for twenty-six years. Spurred by a mocking remark from one of his twelve peers, Richard of Normandy, the emperor decides to stay even longer in order to seize five cities that escaped his authority. Although an angel appears ordering him to go directly to the city of Luserne, Charles persists in besieging the other four, each for a year, without success. On the advice of Naimes, one of his peers and his main counselor, he finally goes to Luserne, which he besieges in vain for seven years.
At the same time in France, the sons of the twelve peers, frustrated by the emperor's excessive absence, gather in Paris to designate a substitute king who would maintain order in the kingdom while Charles is in Spain. Bertrand, Duke Naimes's son, proposes offering the crown to the young Gui of Burgundy.
This report describes a cluster of patients infected by Serratia marcescens in a metropolitan neonatal intensive care unit (NICU) and a package of infection control interventions that enabled rapid, effective termination of the outbreak.
Design:
Cross-sectional analytical study using whole-genome sequencing (WGS) for phylogenetic cluster analysis and identification of virulence and resistance genes.
Setting:
NICU in a metropolitan tertiary-care hospital in Sydney, Australia.
Patients:
All neonates admitted to the level 2 and level 3 neonatal unit.
Interventions:
Active inpatient and environmental screening for Serratia marcescens isolates with WGS analysis for identification of resistance genes as well as cluster relatedness between isolates. Planning and implementation of a targeted, multifaceted infection control intervention.
Results:
The cluster of 10 neonates colonized or infected with Serratia marcescens was identified in a metropolitan NICU. Two initial cases involved devastating intracranial infections with brain abscesses, highlighting the virulence of this organism. A targeted and comprehensive infection control intervention guided by WGS findings enabled termination of this outbreak within 15 days of onset. WGS examination demonstrated phylogenetic linkage across the cluster, and genomic unrelatedness of later strains identified in the neonatal unit and elsewhere.
Conclusions:
A comprehensive, multipronged, infection control package incorporating close stakeholder engagement, frequent microbiological patient screening, environmental screening, enhanced cleaning, optimization of hand hygiene and healthcare worker education was paramount to the prompt control of Serratia marcescens transmission in this neonatal outbreak. WGS was instrumental in establishing relatedness between isolates and identification of possible transmission pathways in an outbreak setting.