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1.
Heliyon ; 10(10): e31051, 2024 May 30.
Article in English | MEDLINE | ID: mdl-38803873

ABSTRACT

Background: Digital stress refers to the stress resulting from persistent use of digital media. Given its major implications for well-being, it is crucial to explore how the use of digital media would contribute to the stress. Drawing on the frameworks of DSMT (i.e., using a digital device during social interactions) and perceived peer norms, we explored whether and how perceived peer norms of DSMT and adolescents' own DSMT were associated with digital stress. Method: Adolescents between the ages of 12 and 18 were recruited through the Qualtrics survey panels. A total of 2105 adolescents completed a one-time online survey (Mage = 15.39, S.D. = 1.82). Results: Path analysis revealed that all three self-DSMT variables (level, positive self-perception, negative self-perception) were associated with higher digital stress, with level and negative self-perception having stronger associations than did positive self-perception. Furthermore, peer DSMT level was related to higher digital stress both directly and indirectly through all three self-DSMT variables. Positive peer perception of DSMT was indirectly related to higher digital stress through higher self-DSMT level and more positive self-perception of DSMT, but was related to lower digital stress through reduced negative self-perception of DSMT. Negative peer perception of DSMT contributed to higher digital stress both directly and indirectly by intensifying teens' own negative perception of DSMT. Judging from the total-paths coefficients, all three peer norm variables were related to higher digital stress, with level having the largest coefficient, followed by negative peer perception and finally positive peer perception of DSMT. Discussion and conclusion: All three perceived peer norms of DSMT (level, positive perception, negative perception) had the potential to increase digital stress directly and/or via impacting teens' own engagement in and perceptions of DSMT, with perceived peer engagement and negative peer perception being the greater risk factors. At the individual level, a similar pattern emerged-self-DSMT level and negative self-perception had noticeably stronger associations with digital stress than did positive self-perception.

2.
J Child Health Care ; : 13674935241242824, 2024 Apr 09.
Article in English | MEDLINE | ID: mdl-38590229

ABSTRACT

Increasing use of paediatric long-term ventilation (LTV) has been reported around the world over the last two decades and it is anticipated that use of this medical intervention will continue to grow. Research has shown that children who use LTV have risk factors for feeding and swallowing difficulties which result in long-term reliance on non-oral feeding methods. This Patient and Public Involvement (PPI) activity explored experiences of parents of children with LTV on their children's feeding and swallowing journeys. Individual and group interviews with seven parents were conducted. Interview data was then analysed using content analysis. Families discussed a range of themes including impacts on their family, facilitators and barriers to feeding and swallowing journeys, speech and language therapy (SLT) support, their family's healthcare journey in relation to quality of life and future directions for research. This study highlighted potential key areas to explore when identifying ways to improve SLT care and research in feeding and swallowing for children who use LTV.

3.
Article in English | MEDLINE | ID: mdl-38533839

ABSTRACT

BACKGROUND: Swallowing impairment (dysphagia) and tracheostomy coexist. Research in this area has often provided an overview of dysphagia management as a whole, but there is limited information pertaining to specific dysphagia therapy in the tracheostomy population. The aim of this scoping review is to provide a detailed exploration of the literature with regard to dysphagia therapeutic interventions in adults with a tracheostomy. The scoping review will describe current evidence and thus facilitate future discussions to guide clinical practice. METHODS: A scoping review using the Joanna Briggs Institute and Preferred Reporting Items for Systematic Reviews guideline will be used. Ten electronic databases from inception to December 2023 and grey literature will be searched. From identified texts forward and backward citation chasing will be completed. Data extraction will compose of population demographics, aetiology and dysphagia therapy (type, design, dose and intensity). A number of citations and papers included in the scoping review will be presented visually. DISCUSSION: The scoping review aims to expand upon the existing literature in this field. A detailed description of the evidence is required to facilitate clinical discussions and develop therapeutic protocols in a tracheostomised population. The results of this scoping review will support future research in dysphagia therapy and provide the basis for the development of best practice guidelines. WHAT THIS PAPER ADDS: What is already known on this subject There is an abundance of evidence available regarding dysphagia therapy targeting impairments of the swallowing sequence in a variety of populations including stroke, head and neck cancer, progressive neurological conditions and critical illness. However, there is a paucity in the literature with regard to identifying dysphagia therapy for adults with a tracheostomy. What this study adds The study protocol aims to describe the methodological features that need to be extracted from existing studies to outline dysphagia therapy for adults with a tracheostomy. To the researchers' knowledge, this is the first study protocol to describe the methodological features of dysphagia therapy for people with a tracheostomy from the literature using a standardised approach (Joanna Briggs Institute and Preferred Reporting Items for Systematic Reviews and Meta-Analyses [PRISMA] guideline). This will ensure that the protocol is replicable for other researchers to use and demonstrates transparency in research methods. What are the clinical implications of this work? The development of a robust protocol is necessary in order to facilitate the scoping review to describe the current evidence and thus facilitate future discussions to guide clinical practice for speech and language therapists working with adults who have a tracheostomy and dysphagia. The publication of the scoping review protocol allows future clinical researchers in the area of tracheostomy and dysphagia management a blueprint with which to narrow their own research questions and it also enables replicability as the principles of good research practice dictate.

4.
PLoS One ; 19(2): e0287872, 2024.
Article in English | MEDLINE | ID: mdl-38386657

ABSTRACT

BACKGROUND: The last three decades have seen a growth in the number of children requiring long-term ventilation. Children with long-term ventilation present with underlying respiratory and neurological conditions that place them at risk of feeding and swallowing difficulties. To date, a scoping review or systematic review investigating the feeding and swallowing outcomes of children with long-term ventilation needs has not been conducted. AIMS: This paper describes a protocol for a scoping review of the feeding and swallowing outcomes of children receiving long-term ventilation. METHODS: This scoping review protocol will utilize the Joanna Briggs Institute scoping review methodology guideline. Our review will focus on the feeding and swallowing outcomes of children aged 0 to 18 years with long-term ventilation needs. A full search strategy initially created by the authors and a research librarian was conducted on the PubMed database. Following this, pilot testing took place to determine discrepancies in eligibility criteria. A full search strategy will be conducted across several databases. A data extraction form has been developed by the authors and will be used during the scoping review process. DISCUSSION: This protocol has been created to provide a rigorous and comprehensive basis for undertaking a scoping review. All necessary steps have been completed in order to commence the scoping review. REGISTRATION: This scoping review protocol was registered on Open Science Framework on the 26th November 2021 (Registration DOI 10.17605/OSF.IO/NQBPD).


Subject(s)
Deglutition Disorders , Deglutition , Child , Humans , Respiration , Respiratory Rate , Academies and Institutes , Review Literature as Topic
5.
J Neuromuscul Dis ; 11(2): 389-410, 2024.
Article in English | MEDLINE | ID: mdl-38250781

ABSTRACT

Background: Dysphagia is common in adults living with neuromuscular disease (NMD). Increased life expectancy, secondary to improvements in standards of care, requires the recognition and treatment of dysphagia with an increased priority. Evidence to support the establishment of healthcare pathways is, however, lacking. The experiences of people living with NMD (pplwNMD) and their caregivers are valuable to guide targeted, value-based healthcare. Objective: To generate preliminary considerations for neuromuscular dysphagia care and future research in the United Kingdom, based on the experiences of those living with, or caring for, people with NMD. Methods: Two surveys (one for adults living with NMD and dysphagia, and a second for caregivers) were co-designed with an advisory group of people living with NMD. Surveys were electronically distributed to adults living with NMD and their caregivers between 18th May and 26th July 2020. Distribution was through UK disease registries, charity websites, newsletters, and social media. Results: Adults living with NMD receive little information or education that they are likely to develop swallowing difficulties. Most respondents report wanting this information prior to developing these difficulties. Difficulties with swallowing food and medication are common in this group, and instrumental assessment is considered a helpful assessment tool. Both adults living with NMD and caregivers want earlier access to neuromuscular swallowing specialists and training in how best to manage their difficulties. Conclusions: Improvement is needed in the dysphagia healthcare pathway for adults living with NMD to help mitigate any profound physical and psychological consequences that may be caused by dysphagia. Education about swallowing difficulties and early referral to a neuromuscular swallowing specialist are important to pplwNMD and their caregivers. Further research is required to better understand the experiences of pplwNMD and their caregivers to inform the development of dysphagia healthcare pathways.


Subject(s)
Deglutition Disorders , Neuromuscular Diseases , Adult , Humans , Deglutition Disorders/etiology , Caregivers , Neuromuscular Diseases/complications , United Kingdom , Surveys and Questionnaires
6.
Dysphagia ; 2024 Jan 05.
Article in English | MEDLINE | ID: mdl-38180625

ABSTRACT

The last two decades have seen increasing use of long-term ventilation (LTV) as an intervention in childhood. Children who use LTV have many risk factors for feeding and swallowing difficulties, including their underlying respiratory and/or neurological etiology, long hospitalizations, medical interventions, and limited exposure to oral feeding experiences. This review aimed to answer two questions: 1) 'What specific swallowing and feeding characteristics do these children experience?'; and 2) 'What impacts do these swallowing and feeding characteristics have on health status and quality of life?'. Texts were identified across bibliographic databases, reference lists, and grey literature. Studies were analyzed according to ventilation, feeding and swallowing, assessment and intervention, and quality of life parameters. Overall, 1919 papers were screened, with 31 papers included in the final data extraction process. A range of feeding and swallowing characteristics were observed, including oral secretion management difficulties, oral aversion, swallowing difficulties, and clinical signs of aspiration. Non-oral feeding was found to be the primary feeding method used. Little information on health status and quality of life was reported in scoping review texts. Children with LTV needs present with a range of feeding and swallowing concerns, and non-oral feeding is common. Further research is needed to understand the feeding and swallowing journey of this population. This will assist in future service planning and delivery, and in turn contribute to improving patient outcomes and quality of life.

7.
Article in English | MEDLINE | ID: mdl-37936550

ABSTRACT

BACKGROUND: We explore the theoretical and methodological aspects of decolonising speech and language therapy (SLT) higher education in the United Kingdom. We begin by providing the background of the Rhodes Must Fall decolonisation movement and the engagement of South African SLTs in the decoloniality agenda. We then discuss the evolution of decoloniality in SLT, highlighting its focus on reimagining the relationships between participants, students, patients and the broader world. OBJECTIVE: The primary objective of this discussion is to fill a gap in professional literature regarding decoloniality in SLT education. While there is limited research in professional journals, social media platforms have witnessed discussions on decolonisation in SLT. This discussion aims to critically examine issues such as institutional racism, lack of belonging, inequitable services and limited diversity that currently affect the SLT profession, not just in the United Kingdom but globally. METHODS: The methods employed in this research involve the engagement of SLT academics in Critical conversations on decolonisation. These conversations draw on reflexivity and reflexive interpretation, allowing for a deeper understanding of the relationship between truth, reality, and the participants in SLT practice and education. The nature of these critical conversations is characterised by their chaotic, unscripted and fluid nature, which encourages the open discussion of sensitive topics related to race, gender, class and sexuality. DISCUSSION POINTS: We present our reflections as academics who participated in the critical conversations. We explore the discomfort experienced by an academic when engaging with decolonisation, acknowledging white privilege, and the need to address fear and an imposter syndrome. The second reflection focuses on the experiences of white academics in grappling with their complicity in a system that perpetuates racism and inequality. It highlights the need for self-reflection, acknowledging white privilege and working collaboratively with colleagues and students toward constructing a decolonised curriculum. Finally, we emphasise that while action is crucial, this should not undermine the potential of dialogue to change attitudes and pave the way for practical implementation. The paper concludes by emphasising the importance of combining dialogue with action and the need for a nuanced understanding of the complexities involved in decolonising SLT education. CONCLUSION: Overall, this paper provides a comprehensive overview of the background, objectives, methods and key reflections related to the decolonisation of SLT higher education in the United Kingdom. It highlights the challenges, discomfort and responsibilities faced by academics in addressing decoloniality and emphasizes the importance of ongoing critical conversations and collective action in effecting meaningful change. WHAT THIS PAPER ADDS: What is already known on this subject Prior to this paper, it was known that the decolonial turn in speech and language therapy (SLT) was a recent focus, building on a history of professional transformation in South Africa. However, there was limited literature on decoloniality in professional journals, with most discussions happening on social media platforms. This paper aims to contribute to the literature and provide a critical conversation on decolonising SLT education, via the United Kingdom. What this paper adds to existing knowledge This paper adds a critical conversation on decolonising SLT higher education. It explores theoretical and methodological aspects of decoloniality in the profession, addressing issues such as institutional racism, lack of sense of belonging, inequitable services and limited diversity. The paper highlights the discomfort experienced by academics in engaging with decolonisation and emphasizes the importance of reflection, collaboration and open dialogue for meaningful change. Notably we foreground deimperialisation (vs. decolonisation) as necessary for academics oriented in/with the Global North so that both processes enable each other. Deimperialisation is work that focuses the undoing of privilege exercised by academics in/with the Global North not only for localising their research and education agenda but checking their rite of passage into the lives of those in the Majority World. What are the potential or actual clinical implications of this work? The paper highlights the need for SLT practitioners and educators to critically examine their practices and curricula to ensure they are inclusive, decolonised and responsive to the diverse needs of communities. The discussions emphasise the importance of addressing institutional racism and promoting a sense of belonging for research participants, SLT students and patients. This paper offers insights and recommendations that can inform the development of more equitable and culturally responsive SLT services and education programmes.

8.
Hosp Pract (1995) ; 51(5): 262-266, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37933498

ABSTRACT

OBJECTIVES: Coagulopathy is associated with increased mortality in children in the intensive care unit (ICU). Recommended management of vitamin K-deficient coagulopathy is vitamin K administration. The goal of this study was to evaluate vitamin K administration for coagulopathy in critically ill children and determine a relationship between vitamin K dose and change in prothrombin time (PT) and international normalized ratio (INR). METHODS: This retrospective cohort study reviewed electronic medical records of patients ≤17 years who received vitamin K for acute coagulopathy in the pediatric ICU from January 2013 to January 2021. Patients receiving vitamin K antagonists were excluded. Effectiveness data included change in PT/INR after vitamin K administration. Safety data included incidence of hypersensitivity or anaphylaxis. RESULTS: A total of 310 patients (median age 6.8 years, range 22 days-17.7 years) received vitamin K. A median of three doses (range 1-8) and 0.14 mg/kg per dose (range 0.09-0.22 mg/kg) were given, most frequently intravenously (892/949, 94%). Most patients (304/310, 98%) had at least one risk factor for vitamin K deficiency. Mean PT/INR was 21.5/2.1 prior to vitamin K administration, which decreased by 4.4 (SD = 9.0, 95% CI 16.011 to 18.015, p < 0.001) and 0.5 (SD = 1.0, 95% CI 1.490 to 1.705, p < 0.001) to means of 17.0 and 1.6, respectively, after the first vitamin K dose. No linear relationship was found between vitamin K dose and change in PT/INR. No hypersensitivity or anaphylaxis occurred following vitamin K administration; 27% (84/310) of patients died. CONCLUSIONS: Administration of vitamin K is effective and safe for the management of vitamin K-deficient coagulopathy in critically ill pediatric patients. Further study is needed to determine a relationship between vitamin K dose and change in PT/INR.


Subject(s)
Anaphylaxis , Blood Coagulation Disorders , Humans , Child , Infant, Newborn , Vitamin K/adverse effects , Retrospective Studies , Anaphylaxis/chemically induced , Critical Illness , Blood Coagulation Disorders/drug therapy , Anticoagulants/adverse effects , International Normalized Ratio
9.
Animals (Basel) ; 13(11)2023 May 27.
Article in English | MEDLINE | ID: mdl-37889740

ABSTRACT

Traditional methods for age determination of wildlife include either slicing thin sections off or grinding a tooth, both of which are laborious and invasive. Especially when it comes to ancient and valuable museum samples of rare or extinct species, non-invasive methods are preferable. In this study, X-ray micro-computed tomography (µ-CT) was verified as an alternative non-invasive method for age determination of three species within the order of Carnivora and suborders Odontoceti. Teeth from 13 red foxes (Vulpes vulpes), 2 American mink (Neogale vison), and 2 harbor porpoises (Phocoena phocoena) of known age were studied using µ-CT. The number of visible dental growth layers in the µ-CT were highly correlated with true age for all three species (R2 = 96%, p < 0.001). In addition, the Bland-Altman plot showed high agreement between the age of individuals and visible dental layers represented in 2D slices of the 3D µ-CT images. The true age of individuals was on average 0.3 (±0.6 SD) years higher than the age interpreted by the µ-CT image, and there was a 95% agreement between the true age and the age interpreted from visible dental layers in the µ-CT.

10.
Cyberpsychol Behav Soc Netw ; 26(10): 782-788, 2023 Oct.
Article in English | MEDLINE | ID: mdl-37702605

ABSTRACT

Adolescents' phone use during face-to-face interactions (i.e., digital social multitasking [DSMT]) has gained increasing attention because of its prevalence as well as implications for well-being. However, most studies have focused on only one dimension of the behavior and relied on variable-centered approaches. Informed by the DSMT framework, we adopted a person-centered approach to identify different groups of adolescents based on their levels, perceptions, and motives of phone use during face-to-face interactions with friends. We also examined how these groups differed in five well-being variables (loneliness, depressive symptoms, digital stress, friendship quality, and satisfaction of basic psychological needs). A total of 517 adolescents (Mage = 14.83, standard deviation [SD] = 1.93; 50 percent female) completed an online survey. Three profiles were identified: the Intentional (low levels, quite positive perceptions, motivated for clear goals), the Embracers (high levels, highly positive perceptions, strong motives), and the Unimpressed (low levels, low positive perceptions, low motives). The Embracers scored the highest on both positive and negative indicators of well-being, whereas the Unimpressed scored the lowest on all well-being scales. The Intentional appeared to be the most adaptive group. Implications are discussed.


Subject(s)
Adolescent Behavior , Friends , Humans , Female , Adolescent , Friends/psychology , Loneliness/psychology , Adolescent Behavior/psychology , Personal Satisfaction , Surveys and Questionnaires
11.
J Pediatr Pharmacol Ther ; 28(3): 180-191, 2023.
Article in English | MEDLINE | ID: mdl-37303760

ABSTRACT

Transitions of care (TOC) before, during, and after hospital discharge are an opportune setting to optimize medication management. The quality standards for pediatric care transitions, however, are lacking, leading to reduced health outcomes in children. This narrative review characterizes the pediatric populations that would benefit from focused, TOC interventions. Different types of medication-focused TOC interventions during hospital discharge are described, including medication reconciliation, education, access, and adherence tools. Various TOC intervention delivery models following hospital discharge are also reviewed. The goal of this narrative review is to help pediatric pharmacists and pharmacy leaders better understand TOC interventions and integrate them into the hospital discharge process for children and their caregivers.

12.
J Aging Soc Policy ; : 1-15, 2023 Jun 26.
Article in English | MEDLINE | ID: mdl-37365764

ABSTRACT

Family caregivers to persons living with a chronic or disabling condition often report disruption to their employment. Employment disruption can cause long-term financial difficulty and psychological distress for caregivers, high costs for employers, and exacerbates social inequities. In this commentary, we describe a community initiative to better support employees who are caregivers conducted with nonprofit employers in San Antonio, located in the central Texas region of the United States. This initiative aimed to raise awareness among local employers about the challenges employees face in balancing employment and caregiving. This led to the co-development of a pledge to guide employer efforts to support employees who are caregivers. This initiative represents a first step to mobilize employers as stakeholder allies to improve workplace support for family caregivers. The authors draw on the Shilton Model of Policy Advocacy to make the case that the mobilization of employers as advocacy stakeholders can hasten the advancement of policies that enable family caregivers to balance both roles. Further, the implementation of organization-level changes, in addition to state and federal policy changes, to support employed caregivers by employers is consistent with recommendations of the recently published National Strategy to Support Family Caregivers.

13.
J Forensic Sci ; 68(5): 1662-1674, 2023 Sep.
Article in English | MEDLINE | ID: mdl-37194396

ABSTRACT

The opioid epidemic has affected the United States (US) for decades with fentanyl and its analogs accounting for a recent surge in morbidity and mortality. Currently, there is a relative lack of information characterizing fentanyl-related fatalities specifically in the Southern US. A retrospective study was conducted to examine all postmortem fentanyl-related drug toxicities in Travis County, Texas, encompassing Austin (one of the fastest-growing cities in the US), from 2020 to 2022. Fentanyl contributed to 2.6% and 12.2% of deaths submitted for toxicology between 2020 and 2022, respectively, representing a 375% increase in fentanyl-related deaths over this 3-year period (n = 517). Fentanyl-related fatalities primarily occurred in males in their mid-30s. Fentanyl and norfentanyl concentrations ranged from 0.58 to 320 ng/mL and 0.53 to 140 ng/mL with mean (median) concentrations of 17.2 ± 25.0 (11.0) and 5.6 ± 10.9 (2.9) ng/mL, respectively. Polydrug use was present in 88% of cases, with methamphetamine (or other amphetamines) (25%), benzodiazepines (21%), and cocaine (17%) representing the most frequently identified concurrent substances. Co-positivity rates of various drugs and drug classes widely varied over time. Scene investigations reported illicit powder(s) (n = 141) and/or illicit pill(s) (n = 154) in 48% (n = 247) of fentanyl-related deaths. Illicit oxycodone (44%, n = 67) and illicit "Xanax" (38%, n = 59) pills were frequently reported on scene; however, toxicology only identified oxycodone and alprazolam in 2 and 24 of these cases, respectively. The results of this study provide a better understanding of the fentanyl epidemic in this region creating an opportunity to promote increased awareness, shift focus to harm reduction, and aid in minimizing public health risks.


Subject(s)
Drug Overdose , Drug-Related Side Effects and Adverse Reactions , Male , Humans , United States , Retrospective Studies , Texas/epidemiology , Oxycodone , Fentanyl , Analgesics, Opioid , Forensic Toxicology/methods , Alprazolam
14.
J Pediatr Pharmacol Ther ; 28(2): 136-142, 2023.
Article in English | MEDLINE | ID: mdl-37139255

ABSTRACT

OBJECTIVE: Critically ill pediatric patients commonly experience opioid-induced dysmotility. Methylnaltrexone, a subcutaneously administered, peripherally acting mu-opioid receptor antagonist, is a compelling adjunct to enteral laxatives in patients with opioid-induced dysmotility. Data for methylnaltrexone use in critically ill pediatric patients are limited. The purpose of this study was to determine the effectiveness and safety of methylnaltrexone for opioid-induced dysmotility in critically ill infants and children. METHODS: Patients younger than 18 years who received subcutaneous methylnaltrexone from January 1, 2013, through September 15, 2020, in the pediatric intensive care units at an academic institution were included in this retrospective analysis. Outcomes included incidence of bowel movement, enteral nutrition feeding volume, and adverse drug events. RESULTS: Twenty-four patients, median age 3.5 years (IQR, 0.58-11.1), received 72 methylnaltrexone doses. The median dose was 0.15 mg/kg (IQR, 0.15-0.15). Patients were receiving a mean ± SD of 7.5 ± 4.5 mg/kg/day of oral morphine milligram equivalents (MMEs) at methylnaltrexone administration and received opioids for median 13 days (IQR, 8.8-21) prior to methylnaltrexone administration. A bowel movement occurred within 4 hours following 43 (60%) administrations and within 24 hours following 58 (81%) administrations. Enteral nutrition volume increased by 81% (p = 0.002) following administration. Three patients had emesis and 2 received anti-nausea medication. No significant changes in sedation or pain scores were observed. Withdrawal scores and daily oral MMEs decreased following administration (p = 0.008 and p = 0.002, respectively). CONCLUSIONS: Methylnaltrexone may be an effective treatment for opioid-induced dysmotility in critically ill pediatric patients with low risk of adverse effects.

15.
bioRxiv ; 2023 Jun 08.
Article in English | MEDLINE | ID: mdl-37034731

ABSTRACT

The embryonic transcription factor DUX regulates chromatin opening and gene expression in totipotent cleavage-stage mouse embryos, and its expression in embryonic stem cells promotes their conversion to 2-cell embryo-like cells (2CLCs) with extraembryonic potential. However, little is known regarding which domains within mouse DUX interact with particular chromatin and transcription regulators. Here, we reveal that the C-terminus of mouse DUX contains five uncharacterized ~100 amino acid (aa) repeats followed by an acidic 14 amino acid tail. Unexpectedly, structure-function approaches classify two repeats as 'active' and three as 'inactive' in cleavage/2CLC transcription program enhancement, with differences narrowed to a key 6 amino acid section. Our proximity dependent biotin ligation (BioID) approach identified factors selectively associated with active DUX repeat derivatives (including the 14aa 'tail'), including transcription and chromatin factors such as SWI/SNF (BAF) complex, as well as nucleolar factors that have been previously implicated in regulating the Dux locus. Finally, our mechanistic studies reveal cooperativity between DUX active repeats and the acidic tail in cofactor recruitment, DUX target opening, and transcription. Taken together, we provide several new insights into DUX structure-function, and mechanisms of chromatin and gene regulation.

16.
BMJ Paediatr Open ; 7(1)2023 04.
Article in English | MEDLINE | ID: mdl-37012004

ABSTRACT

BACKGROUND: Children with medical complexity is an increasing population whose parents and healthcare providers face multiple decisions. Shared decision-making is a process where patients, their families and healthcare providers collaborate to make decisions based on clinical evidence and informed preferences of the family. Shared decision-making has benefits for the child, family and healthcare providers, including improved parental understanding of the child's difficulties, increased participation, improved coping skills and more efficient healthcare use. It is, however, poorly implemented. AIMS AND METHODS: A scoping review was conducted to explore shared decision-making for children with medical complexity in community health services, including how shared decision-making is defined in research, how it is implemented, including barriers and facilitators and recommendations for research. Six databases were systematically searched for papers published in English up to May 2022: Medline, CINAHL, EMBASE, PsycINFO, PubMed, Cochrane Database of Systematic Reviews and sources of grey literature. The review is reported according to the Preferred Reporting Items for Scoping Reviews. RESULTS: Thirty sources met the inclusion criteria. Most factors can either be a facilitator or barrier to shared decision-making depending on the context. Two significant barriers to shared decision-making in this population include uncertainty about the child's diagnosis, prognosis, and treatment options and the presence of hierarchy and power imbalance during clinical encounters with healthcare providers. Further influencing factors include continuity of care, the availability of accurate, accessible, adequate, and balanced information and the interpersonal and communication skills of parents and healthcare providers. CONCLUSION: Uncertainty about diagnosis, prognosis and treatment outcomes for children with medical complexity are additional challenges to the known barriers and facilitators to shared decision-making in community health services. Effective implementation of shared decision-making requires advancement of the evidence base for children with medical complexity, reducing power imbalance in clinical encounters, improving continuity of care, and improving the availability and accessibility of information resources.


Subject(s)
Decision Making, Shared , Decision Making , Humans , Child , Systematic Reviews as Topic , Patient Participation , Community Health Services
17.
Astrobiology ; 23(3): 280-290, 2023 03.
Article in English | MEDLINE | ID: mdl-36724478

ABSTRACT

Ultraviolet shielding materials are potential ecological niches for biosignatures. Finding such materials on Mars would narrow the search for potentially habitable regions. A mini-goniometer was built to collect transmission spectra as a function of scattering angle for Mars analog regoliths (JSC Mars-1, basalt, cheto bentonite, and kieserite) and crystalline rock samples from the Haughton impact structure on Devon Island, Nunavut, in the Canadian High Arctic Archipelago. The transmission through the materials was assessed at ultraviolet and visible wavelengths and at different scattering angles. From the results, it is possible to classify the samples into UV transmitters and UV quenchers. UV transmitters are materials that favor transmittance of UV wavelengths compared to photosynthetically active radiation (PAR), while the UV quenchers are materials that effectively block UV radiation from propagating into the subsurface. Additionally, samples that are effective UV quenchers tend to have more isotropic scattering profiles, whereas UV transmitters tend to favor forward scattering profiles. Samples with greater porosity had greater overall transmission. The depths at which radioresistant microorganisms can exist on present-day Mars are estimated by modeling the transmission for regoliths and crystalline rocks under martian insolation. The depth at which LD90 occurs is found to range down to 0.3 mm, while still allowing up to 1000 kJ/m2 of PAR at those depths. Due to the exceptionally protective nature of JSC Mars-1, intimate mixtures of organisms and regolith will result in some organisms experiencing orders of magnitude less UV flux than others, even when protected by only a single grain of simulant.


Subject(s)
Mars , Ultraviolet Rays , Extraterrestrial Environment , Canada
18.
J Adolesc ; 95(4): 811-823, 2023 06.
Article in English | MEDLINE | ID: mdl-36793203

ABSTRACT

INTRODUCTION: Phone use during face-to-face interactions (i.e., digital social multitasking [DSMT]) is a growing activity among adolescents. DSMT appears to be a risk factor for problematic phone use, but little is known about why adolescents engage in DSMT and how different motives of DSMT would be associated with problematic phone use. Drawing on the framework of DSMT and the uses and gratifications theory, this study explored (1) the motives of adolescent DSMT and (2) the direct and indirect relationships between DSMT motives and problematic phone use via the level and perception of DSMT. METHOD: The study involved survey data from 517 adolescents in the United States recruited through the Qualtrics panels (Mage = 14.83, SD = 1.93) in the fall of 2020. The sample's gender and racial/ethnic distributions were nationally representative. RESULTS: We developed a scale measuring adolescent DSMT motives, which showed that adolescents engaged in DSMT because of enjoyment and connection, boredom, information, and habitual use. The motive of habitual use was associated with problematic phone use both directly and indirectly via level of DSMT and perceived distraction caused by DSMT. The information motive was directly associated with problematic phone use, while the boredom motive was indirectly associated with problematic phone use via perceived distraction. Conversely, the motive of enjoyment and connection was related to lower problematic phone use both directly and indirectly via lower perceived distraction. CONCLUSION: The study identifies DSMT-related risk and protective factors for problematic phone use. The findings should help adults recognize adaptive versus maladaptive forms of DSMT among adolescents and develop proper guidance and intervention.


Subject(s)
Adolescent Behavior , Behavior, Addictive , Cell Phone , Adult , Humans , Adolescent , Surveys and Questionnaires , Motivation
19.
Dev Med Child Neurol ; 65(9): 1199-1205, 2023 09.
Article in English | MEDLINE | ID: mdl-36798989

ABSTRACT

AIM: To agree wording of level descriptors for a measure of functional outcome of children's eating and drinking. METHOD: An online, modified Delphi method was used to gather feedback on current level descriptor wording and generate rewording suggestions. Thirty speech and language therapists, working in a variety of settings and geographical locations, were invited to be part of the Delphi expert panel. Content analysis was used to evaluate participants' comments and develop consensus level descriptors. Consensus for acceptable wording was set at 80% agreement. Face validity was assessed using 5-point Likert scales. RESULTS: Nineteen expert speech and language therapists (median experience 18 years) completed round one; 15 out of 19 completed round two. Level descriptor rating reached 80% agreement in two rounds. Additionally, 93% of participants agreed the scale would accurately capture change in their setting, with 87% likely to use the scale in practice. INTERPRETATION: This study has produced agreed wording for a functional measure of eating and drinking activity suitable for use with paediatrics feeding disorders, regardless of disease aetiology, presentation, age, or setting. Potential for widespread use is supported. Further evaluation of the tool's reliability and validity is required.


Subject(s)
Consensus , Humans , Child , Reproducibility of Results , Delphi Technique
20.
Health Expect ; 26(2): 613-629, 2023 04.
Article in English | MEDLINE | ID: mdl-36647692

ABSTRACT

INTRODUCTION: Using co-design processes, we aimed to develop an evidence-based decision guide for family carers and hospital professionals to support decision-making about eating and drinking for hospital patients with severe dementia. METHODS: Following a systematic review, we interviewed people with mild dementia, family carers and hospital professionals in England. We then held co-design workshops with family carers and hospital professionals. In parallel with the workshops, we used a matrix to synthesize data from all studies and to develop a decision guide prototype. The prototype was iteratively refined through further co-design workshops and discussions among researchers and Patient and Public Involvement (PPI) representatives. We conducted user testing for final feedback and to finalize the decision guide. RESULTS: Most participants acknowledged the limited benefits of tube feeding and would not use or want it for someone with severe dementia. However, they found decision-making processes and communication about nutrition and hydration were emotionally demanding and poorly supported in acute hospitals. The co-design groups developed the aims of the decision guide to support conversations and shared decision-making processes in acute hospitals, and help people reach evidence-based decisions. It was designed to clarify decision-making stages, provide information and elicit the values/preferences of everyone involved. It encouraged person-centred care, best-interests decision-making and multidisciplinary team working. From user testing, family carers and hospital professionals thought the decision guide could help initiate conversations and inform decisions. The final decision guide was disseminated and is being used in clinical practice in England. CONCLUSION: We used rigorous and transparent processes to co-design the decision guide with everyone involved. The decision guide may facilitate conversations about nutrition and hydration and help people reach shared decisions that meet the needs and preferences of people with severe dementia. Future evaluation is required to test its real-world impacts. PATIENT OR PUBLIC CONTRIBUTION: People with mild dementia, family carers and hospital professionals contributed to the design of the decision guide through the interviews and co-design workshops. PPI members helped design study procedures and materials and prepare this manuscript.


Subject(s)
Dementia , Humans , Dementia/psychology , Caregivers/psychology , England , Hospitals
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