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Cognitive function may contribute to variability in older adults’ ability to cope with chronic stress; however, limited research has evaluated this relationship. This study investigated the relationship between theoretically derived coping domains and cognitive function in 165 middle-to-older adults during the Omicron stage of COVID-19.
Method:
Participants completed a clinical interview and self-report measures of health. The National Alzheimer’s Coordinating Center Uniform Data Set neuropsychological battery was used to evaluate memory, language, executive function/speed, and working memory. Structural equation modeling evaluated the underlying factor structure of the Brief COPE adapted for COVID-19.
Results:
The data supported the proposed second-order Approach factor comprised of Problem-Solving and Emotion Regulation (ER) strategies and a first-order Avoidance factor. Higher Avoidance was associated with greater depression symptoms, lower income and worse memory, executive function, working memory, and verbal fluency performance. Higher Problem-Solving was associated with better verbal fluency performance. ER strategies were not significantly associated with cognitive function. The use of Problem-Solving was not associated with less Avoidance. Greater use of Problem-Solving, ER, and Avoidance were all associated with higher levels of stress. Post-hoc analyses found that higher Acceptance was the only coping strategy associated with less stress.
Conclusions:
These findings demonstrate that older adults with worse cognitive function were more likely to use Avoidance during the pandemic, which could result in prolonged stress and adverse health consequences. Future research is warranted to investigate whether acceptance-based interventions reduce the avoidance and impact of stress on health in vulnerable older adults.
Hard-to-treat childhood cancers are those where standard treatment options do not exist and the prognosis is poor. Healthcare professionals (HCPs) are responsible for communicating with families about prognosis and complex experimental treatments. We aimed to identify HCPs’ key challenges and skills required when communicating with families about hard-to-treat cancers and their perceptions of communication-related training.
Methods
We interviewed Australian HCPs who had direct responsibilities in managing children/adolescents with hard-to-treat cancer within the past 24 months. Interviews were analyzed using qualitative content analysis.
Results
We interviewed 10 oncologists, 7 nurses, and 3 social workers. HCPs identified several challenges for communication with families including: balancing information provision while maintaining realistic hope; managing their own uncertainty; and nurses and social workers being underutilized during conversations with families, despite widespread preferences for multidisciplinary teamwork. HCPs perceived that making themselves available to families, empowering them to ask questions, and repeating information helped to establish and maintain trusting relationships with families. Half the HCPs reported receiving no formal training for communicating prognosis and treatment options with families of children with hard-to-treat cancers. Nurses, social workers, and less experienced oncologists supported the development of communication training resources, more so than more experienced oncologists.
Significance of results
Resources are needed which support HCPs to communicate with families of children with hard-to-treat cancers. Such resources may be particularly beneficial for junior oncologists and other HCPs during their training, and they should aim to prepare them for common challenges and foster greater multidisciplinary collaboration.
The goal of a research ethics consultation service (RECS) is to assist relevant parties in navigating the ethical issues they encounter in conduct of research. The goal of this survey was to describe the current landscape of research ethics consultation and document if and how it has changed over the last decade.
Methods:
The survey instrument was based on the survey previously circulated. We included a number of survey domains from the previous survey with the goal of direct comparison of outcomes. The survey was sent to 57 RECS in the USA and Canada.
Results:
Forty-nine surveys were completed for an overall response rate of 86%. With the passing of 10 years, the volume of consults received by RECS surveyed has increased. The number of consults received by a subset of RECS remains low. RECS continues to receive requests for consults from a wide range of stakeholders. About a quarter of RECS surveyed actively evaluate their services, primarily through satisfaction surveys routinely shared with requestors. The number of RECS evaluating their services has increased. We identified a group of eight key competencies respondents find as key to providing RECS.
Conclusions:
The findings from our survey demonstrate that there have been growth and development of RECS since 2010. Further developing evaluation and competency guidelines will help existing RECS continue to grow and facilitate newly established RECS maturation. Both will allow RECS personnel to better serve their institutions and add value to the research conducted.
Along with the greater research enterprise, Institutional Review Boards (IRBs) had to quickly adapt to the COVID-19 pandemic. IRBs had to review and oversee COVID-related research, while navigating strict public health measures and a workforce largely relegated to working from home. Our objectives were to measure adjustments to standard IRB review processes, IRB turnaround time and document and any novel ethical issues encountered.
Methods:
Structured data requests were sent to members of the Consortium to Advance Effective Research Ethics Oversight directing Human Research Protection Programs (HRPP).
Results:
Fourteen of the 32 HRPP director members responded to a questionnaire about their approach to review and oversight during COVID-19. Eleven of the 14 provided summary data on COVID-19-specific protocols and six of the 11 provided protocol-related documents for our review. All respondents adopted at least one additional COVID-19-specific step to their usual review process. The average turnaround time for convened and expedited IRB reviews was 15 calendar days. In our review of the documents from 194 COVID-19-specific protocols (n = 302 documents), we identified only a single review that raised ethical concerns unique to COVID-19.
Conclusions:
Our data provide a snapshot of how HRPPs approached the review of COVID-19-specific protocols at the start of the pandemic in the USA. While not generalizable to all HRPPs, these data indicate that HRPPs can adapt and respond quickly response to a pandemic and likely need little novel expertise in the review and oversight of COVID-19-specific protocols.
The objectives of this study were to develop and refine EMPOWER (Enhancing and Mobilizing the POtential for Wellness and Resilience), a brief manualized cognitive-behavioral, acceptance-based intervention for surrogate decision-makers of critically ill patients and to evaluate its preliminary feasibility, acceptability, and promise in improving surrogates’ mental health and patient outcomes.
Method
Part 1 involved obtaining qualitative stakeholder feedback from 5 bereaved surrogates and 10 critical care and mental health clinicians. Stakeholders were provided with the manual and prompted for feedback on its content, format, and language. Feedback was organized and incorporated into the manual, which was then re-circulated until consensus. In Part 2, surrogates of critically ill patients admitted to an intensive care unit (ICU) reporting moderate anxiety or close attachment were enrolled in an open trial of EMPOWER. Surrogates completed six, 15–20 min modules, totaling 1.5–2 h. Surrogates were administered measures of peritraumatic distress, experiential avoidance, prolonged grief, distress tolerance, anxiety, and depression at pre-intervention, post-intervention, and at 1-month and 3-month follow-up assessments.
Results
Part 1 resulted in changes to the EMPOWER manual, including reducing jargon, improving navigability, making EMPOWER applicable for a range of illness scenarios, rearranging the modules, and adding further instructions and psychoeducation. Part 2 findings suggested that EMPOWER is feasible, with 100% of participants completing all modules. The acceptability of EMPOWER appeared strong, with high ratings of effectiveness and helpfulness (M = 8/10). Results showed immediate post-intervention improvements in anxiety (d = −0.41), peritraumatic distress (d = −0.24), and experiential avoidance (d = −0.23). At the 3-month follow-up assessments, surrogates exhibited improvements in prolonged grief symptoms (d = −0.94), depression (d = −0.23), anxiety (d = −0.29), and experiential avoidance (d = −0.30).
Significance of results
Preliminary data suggest that EMPOWER is feasible, acceptable, and associated with notable improvements in psychological symptoms among surrogates. Future research should examine EMPOWER with a larger sample in a randomized controlled trial.
OBJECTIVES/GOALS: Autism spectrum disorder (ASD) is characterized by difficulties in communication and social interaction as well as restricted and repetitive behaviors. Sleep problems are a common concern in children with ASD that can persist into adulthood. This study aims to further explore sleep in ASD without intellectual disability (ASD w/o ID). METHODS/STUDY POPULATION: We recruited individuals of both sexes with ASD w/o ID (probands) and relatives as part of the Autism Spectrum Program of Excellence (ASPE) at the University of Pennsylvania. Actimetry data were collected via a wrist-worn tri-axial accelerometer for 21 days. Data from 212 participants were considered. We analyzed sleep data using the algorithms GGIR, ChronoSapiens, and PennZzz. The sleep traits of proband and sibling pairs were compared using paired t-test or Wilcoxon signed-rank test. We used the Social Responsiveness Scale, Second Edition (SRS-2) to assess social impairment and restricted/repetitive traits. We compared SRS-2 scores to sleep traits using partial Spearman or Pearson correlations adjusting for age (171 participants). RESULTS/ANTICIPATED RESULTS: Probands demonstrated later sleep onset (p = 0.03), decreased M10 average (10-hour period of highest activity/day; p = 0.006), decreased relative amplitude (measure of rest-activity rhythm; p <0.001), and decreased total daytime activity (p = 0.005) compared to siblings. Regarding social function and restricted/repetitive traits, adult males showed an inverse correlation between SRS-2 total score and sleep efficiency (r = −0.2, p = 0.04) and a positive correlation between SRS-2 total score and intradaily variability (r = 0.3, p = 0.02). Adult females showed an inverse correlation between SRS-2 total score and M10 average (r = −0.3, p = 0.02) and between SRS-2 total score and relative amplitude (self-report r = −0.4, p = 0.001; informant r = −0.3, p = 0.005). DISCUSSION/SIGNIFICANCE OF IMPACT: This study focuses on the analysis of sleep traits in ASD including the relationship between social function and sleep. Thus far, the most robust findings are decreased daytime activity and relative amplitude in individuals with ASD w/o ID compared to siblings. We have also shown that ASD social impairment may be related to sleep dysfunction.
This paper examines the practice implications of various state policies that provide publicly funded prenatal care to undocumented immigrants for health care workers who see undocumented patients. Data were collected through in-depth interviews with purposively sampled health care workers at safety net clinics in California, Maryland, Nebraska, and New York. Health care workers were asked about the process through which undocumented patients receive prenatal care in their health center and the ethical tensions and frustrations they encounter when providing or facilitating this care under policy restrictions. Respondents discussed several professional practice norms as well as the ethical tensions they encountered when policy or institutional constraints prevented them from living up to professional norms. Using Nancy Berlinger's “workarounds” framework, this paper examines health care workers' responses to the misalignment of their professional norms and the policy restrictions in their state. These findings suggest that the prenatal policies in each state raise ethical and professional challenges for the health care workers who implement them.
To help eliminate perinatal HIV transmission, the US Department of Health and Human Services recommends against breastfeeding for women living with HIV, regardless of viral load or combined antiretroviral therapy (cART) status. However, cART radically improves HIV prognosis and virtually eliminates perinatal transmission, and breastfeeding's health benefits are well-established. In this setting, pregnancy is increasing among American women with HIV, and a harm reduction approach to those who breastfeed despite extensive counseling is suggested. We assess the evidence and ethical justification for current policy, with attention to pertinent racial and health disparities. We first review perinatal transmission and breastfeeding data relevant to US infants. We compare hypothetical risk of HIV transmission from breastmilk to increased mortality from sudden infant death syndrome, necrotizing enterocolitis and sepsis from avoiding breastfeeding, finding that benefits may outweigh risks if mothers maintain undetectable viral load on cART. We then review maternal health considerations. We conclude that avoidance of breastfeeding by women living with HIV may not maximize health outcomes and discuss our recommendation for revising national guidelines in light of autonomy, harm reduction and health inequities.
The landmark US Multimodal Treatment of ADHD (MTA) study established the
benefits of individualised medication titration and optimisation
strategies to improve short- to medium-term outcomes in attention-deficit
hyperactivity disorder (ADHD). This individualised medication management
approach was subsequently incorporated into the National Institute for
Health and Care Excellence (NICE) ADHD Clinical Guidelines (NICE CG78).
However, little is known about clinicians' attitudes towards implementing
these medication management strategies for ADHD in routine care.
Aims
To examine National Health Service (NHS) healthcare professionals'
consensus on ADHD medication management strategies.
Method
Using the Delphi method, we examined perceptions on the importance and
feasibility of implementing 103 ADHD treatment statements from sources
including the UK NICE ADHD guidelines and US medication management
algorithms.
Results
Certain recommendations for ADHD medication management were judged as
important and feasible to implement, including a stepwise titration of
stimulant medication. Other recommendations were perceived as important
but not feasible to implement in routine practice, such as weekly clinic
follow-up with the family during titration and collection of follow-up
symptom questionnaires.
Conclusions
Many of the key guideline recommendations for ADHD medication management
are viewed by clinicians as important and feasible to implement. However,
some recommendations present significant implementation challenges within
the context of routine NHS clinical care in England.
Local health departments and their employees are at the forefront of emergency preparedness and response. Yet, recent studies have found that some local public health workers are unwilling to report to work in a variety of disaster scenarios. This can greatly compromise a response, as many local health departments need “all hands on deck” to effectively meet increased demands. To address these concerns, local health departments have employed varied policy strategies to ensure that employees do report to work. After describing different approaches taken by local health departments throughout the United States, we briefly identify and explore key ethics considerations that arise for local health departments when employees are required to report to work for emergency responses. We then discuss how these ethics considerations may inform local health department practices intended to promote a robust emergency response.
In an emergency, challenges faced by disabled individuals may be exacerbated by ineffective communication, power outages, transportation shortcomings, and inhospitable shelters. During Hurricanes Katrina and Rita, Gulf Coast shelters did not routinely provide closed captioning or sign language interpreters; for individuals with auditory disabilities, understanding instructions issued in these shelters was extremely difficult. Individuals with mobility-related disabilities experienced challenges evacuating from their homes due to public transportation that could not accommodate wheelchairs. After the hurricanes, difficulties arose in identifying wheelchair-accessible trailers and in communicating with disabled trailer residents. Failing to anticipate these challenges intensifies the disadvantaged situation of those with disabilities during an emergency.
The Bovine Respiratory Disease Coordinated Agricultural Project (BRD CAP) is a 5-year project funded by the United States Department of Agriculture (USDA), with an overriding objective to use the tools of modern genomics to identify cattle that are less susceptible to BRD. To do this, two large genome wide association studies (GWAS) were conducted using a case:control design on preweaned Holstein dairy heifers and beef feedlot cattle. A health scoring system was used to identify BRD cases and controls. Heritability estimates for BRD susceptibility ranged from 19 to 21% in dairy calves to 29.2% in beef cattle when using numerical scores as a semi-quantitative definition of BRD. A GWAS analysis conducted on the dairy calf data showed that single nucleotide polymorphism (SNP) effects explained 20% of the variation in BRD incidence and 17–20% of the variation in clinical signs. These results represent a preliminary analysis of ongoing work to identify loci associated with BRD. Future work includes validation of the chromosomal regions and SNPs that have been identified as important for BRD susceptibility, fine mapping of chromosomes to identify causal SNPs, and integration of predictive markers for BRD susceptibility into genetic tests and national cattle genetic evaluations.
Study partners for dementia research participants are vital to the research process, but little is known about their role, responsibilities, and experiences. Study partners are usually family members or friends – often the patient's informal caregiver – who are knowledgeable about and usually accompany the participant to study visits. This study examines researchers’ perspectives on the role of study partners in dementia research.
Methods:
Qualitative data collection and analytic methods were used. Semi-structured individual interviews with principal investigators, study coordinators, and research nurses (i.e. researchers; n = 17) at two academic research sites were recorded, transcribed, and content analyzed to identify themes in the data.
Results:
According to researchers, study partners either make or help make research enrollment and post-enrollment decisions, serve as knowledgeable informants for the participants, manage the logistics that enable participants to comply with a study's protocol, and provide comfort and encouragement for the patient to engage in and complete a study. Researchers describe ideal qualities of study partners as being able to provide reliable information, being dependable and adherent to the protocol, and not expecting a benefit. They also report that study partners may face both practical and emotional challenges during research participation. However, researchers believe that study partners derive dementia-related education, caregiver support, and satisfaction from their involvement in research.
Conclusions:
Investigators, potential study partners, and institutional review boards should be aware of study partners’ research responsibilities, challenges, and their interests as caregivers.
This article examines the meeting point of Olivier Messiaen, Australia and birdsong, particularly as it relates to the transcription of pied butcherbird (Cracticus nigrogularis) vocalizations. It draws upon correspondence from Messiaen to the Australian ornithologist Sydney Curtis, printed here for the first time, as well as two recordings not previously available to musicologists, from which Messiaen transcribed. Both the recorded birdsong models and Messiaen's transcription of them in his cahiers are subjected to sonographic and waveform analysis. In analytical scrutiny of eight of these transcriptions, I demonstrate that Messiaen's pied butcherbird transcriptions conform to their models in a partial and highly personal way. I propose a provisional template for Messiaen's approach to birdsong transcription, in order to answer Alexander Goehr's question: ‘Why do birds sound like birds, but Messiaen's birds sound like Messiaen?’
Symptoms of attention-deficit hyperactivity disorder (ADHD) are known to
persist into adulthood in the majority of cases.
Aims
To determine the prevalence of methylphenidate, dexamfetamine and
atomoxetine prescribing and treatment discontinuation in adolescents and
young adults.
Method
A descriptive cohort study using the UK General Practice Research
Database included patients aged 15–21 years from 1999 to 2006 with a
prescription for a study drug.
Results
Prevalence of prescribing averaged across all ages increased 6.23-fold
over the study period. Overall, prevalence decreased with age: in 2006,
prevalence in males dropped 95% from 12.77 per 1000 in 15-year-olds to
0.64 per 1000 in 21-year-olds. A longitudinal analysis of a cohort of 44
patients aged 15 years in 1999 demonstrated that no patient received
treatment after the age of 21 years.
Conclusions
The prevalence of prescribing by general practitioners to patients with
ADHD drops significantly from age 15 to age 21 years. The fall in
prescribing is greater than the reported age-related decrease in
symptoms, raising the possibility that treatment is prematurely
discontinued in some young adults in whom symptoms persist.
Multiple scholars and institutions have asked what distinguishes public health research from public health practice. Most often, they ask in order to have a clear definition of what one does in various public health settings to assess oversight and/or regulation of human subjects research. More importantly, however, whether something is considered public health research or public health practice has real ethical implications in terms of the general moral considerations at stake and the obligations of public health researchers/practitioners to the populations they serve or study.
Numerous examples in recent history of research ethics, including the Kennedy Krieger Lead Abatement Study and EPA’s Children’s Environmental Exposure Research Study (CHEERS), suggest that an exploration of the ethics of public health, or more generally population-based research, may be warranted. Although we acknowledge that there are important ethical issues to consider in the implementation of public health practice, we leave that discussion for other authors.
People conceive of different spaces differently, depending on the functions they serve. This chapter considers the space of the body, space surrounding the body, space of navigation, and space of external representations, such as diagrams and graphs. Representations of the space of the body allow us to know what the parts of our bodies can do, where they are, what is impinging on them, and, importantly, how to interpret the bodies of others. The space around the body is decomposed into the six regions projecting from the six surfaces of the body. The space of navigation is the space of potential travel. It serves to guide us as we walk, drive, fly about in the world. The space of external representations considered here is typically space on paper meant to represent an actual space. External visuospatial representations bear many similarities to those that reside in the mind.