The influence of parent gender on division of work in families of children with disabilities

This is a qualitative study which examined the influence of parent gender on division of work in families of children with disabilities. Thirty-three interviews were completed with mothers and fathers from ten families over a four year period. The study used a family systems framework to examine child and family characteristics, family perceptions, family interactions, and social roles and family work. Data was obtained through in-depth interviews and family stories and cross-cutting themes were identified and discussed. Results indicated mothers are continuing to assume the majority of the work including direct and indirect child care, and are experiencing role strain over the life cycle. The severity of disability increased the work and role demands placed on mothers. Fathers help out their wives, and both mothers and fathers perceived their relationships to be good. Both mothers and fathers expressed a need to perceive their child and family as normal and to persevere to define quality of life. Many fathers withdrew initially from their children with disabilities and their wives at the time of diagnosis. Fathers perceive their main role as financial manager and leader of the family and most of these parents discussed financial hardship due to disability. Implications are discussed for both future research and practice with families of children with disabilities.*;*Originally published in DAI Vol. 57, No. 4. Reprinted here with corrected author name

Finishing the euchromatic sequence of the human genome

The sequence of the human genome encodes the genetic instructions for human physiology, as well as rich information about human evolution. In 2001, the International Human Genome Sequencing Consortium reported a draft sequence of the euchromatic portion of the human genome. Since then, the international collaboration has worked to convert this draft into a genome sequence with high accuracy and nearly complete coverage. Here, we report the result of this finishing process. The current genome sequence (Build 35) contains 2.85 billion nucleotides interrupted by only 341 gaps. It covers ∼99% of the euchromatic genome and is accurate to an error rate of ∼1 event per 100,000 bases. Many of the remaining euchromatic gaps are associated with segmental duplications and will require focused work with new methods. The near-complete sequence, the first for a vertebrate, greatly improves the precision of biological analyses of the human genome including studies of gene number, birth and death. Notably, the human enome seems to encode only 20,000-25,000 protein-coding genes. The genome sequence reported here should serve as a firm foundation for biomedical research in the decades ahead

Multiorgan MRI findings after hospitalisation with COVID-19 in the UK (C-MORE): a prospective, multicentre, observational cohort study

Introduction: The multiorgan impact of moderate to severe coronavirus infections in the post-acute phase is still poorly understood. We aimed to evaluate the excess burden of multiorgan abnormalities after hospitalisation with COVID-19, evaluate their determinants, and explore associations with patient-related outcome measures. Methods: In a prospective, UK-wide, multicentre MRI follow-up study (C-MORE), adults (aged ≥18 years) discharged from hospital following COVID-19 who were included in Tier 2 of the Post-hospitalisation COVID-19 study (PHOSP-COVID) and contemporary controls with no evidence of previous COVID-19 (SARS-CoV-2 nucleocapsid antibody negative) underwent multiorgan MRI (lungs, heart, brain, liver, and kidneys) with quantitative and qualitative assessment of images and clinical adjudication when relevant. Individuals with end-stage renal failure or contraindications to MRI were excluded. Participants also underwent detailed recording of symptoms, and physiological and biochemical tests. The primary outcome was the excess burden of multiorgan abnormalities (two or more organs) relative to controls, with further adjustments for potential confounders. The C-MORE study is ongoing and is registered with ClinicalTrials.gov, NCT04510025. Findings: Of 2710 participants in Tier 2 of PHOSP-COVID, 531 were recruited across 13 UK-wide C-MORE sites. After exclusions, 259 C-MORE patients (mean age 57 years [SD 12]; 158 [61%] male and 101 [39%] female) who were discharged from hospital with PCR-confirmed or clinically diagnosed COVID-19 between March 1, 2020, and Nov 1, 2021, and 52 non-COVID-19 controls from the community (mean age 49 years [SD 14]; 30 [58%] male and 22 [42%] female) were included in the analysis. Patients were assessed at a median of 5·0 months (IQR 4·2–6·3) after hospital discharge. Compared with non-COVID-19 controls, patients were older, living with more obesity, and had more comorbidities. Multiorgan abnormalities on MRI were more frequent in patients than in controls (157 [61%] of 259 vs 14 [27%] of 52; p<0·0001) and independently associated with COVID-19 status (odds ratio [OR] 2·9 [95% CI 1·5–5·8]; padjusted=0·0023) after adjusting for relevant confounders. Compared with controls, patients were more likely to have MRI evidence of lung abnormalities (p=0·0001; parenchymal abnormalities), brain abnormalities (p<0·0001; more white matter hyperintensities and regional brain volume reduction), and kidney abnormalities (p=0·014; lower medullary T1 and loss of corticomedullary differentiation), whereas cardiac and liver MRI abnormalities were similar between patients and controls. Patients with multiorgan abnormalities were older (difference in mean age 7 years [95% CI 4–10]; mean age of 59·8 years [SD 11·7] with multiorgan abnormalities vs mean age of 52·8 years [11·9] without multiorgan abnormalities; p<0·0001), more likely to have three or more comorbidities (OR 2·47 [1·32–4·82]; padjusted=0·0059), and more likely to have a more severe acute infection (acute CRP >5mg/L, OR 3·55 [1·23–11·88]; padjusted=0·025) than those without multiorgan abnormalities. Presence of lung MRI abnormalities was associated with a two-fold higher risk of chest tightness, and multiorgan MRI abnormalities were associated with severe and very severe persistent physical and mental health impairment (PHOSP-COVID symptom clusters) after hospitalisation. Interpretation: After hospitalisation for COVID-19, people are at risk of multiorgan abnormalities in the medium term. Our findings emphasise the need for proactive multidisciplinary care pathways, with the potential for imaging to guide surveillance frequency and therapeutic stratification

Screening for Mild Traumatic Brain Injury in OEF-OIF Deployed Military: An Empirical Assessment of the VHA Experience

The Veterans Health Administration screens for traumatic brain injury (TBI) among all its patients who were deployed to Afghanistan or Iraq. This paper reports patient-level results of the screening program in 2008 and 2009 including rates of referrals and utilization. METHODS We based rates of positive screens on all screened patients from October 2007 through March 2009 as captured in VHA electronic records of screenings. We derived rates of TBI confirmed by comprehensive evaluations only from October 2008 through July 2009 as captured in VHA electronic evaluations records. We obtained patient characteristics from Department of Defense and VHA data

Towards linking environmental law and science

Gaps between environmental science and environmental law may undermine sound environmental decision-making. We link perspectives and insights from science and law to highlight opportunities and challenges at the environmental science–law interface. The objectives of this paper are to assist scientists who wish to conduct and communicate science that informs environmental statutes, regulations, and associated operational policies (OPs), and to ensure the environmental lawyers (and others) working to ensure that these statutes, regulations, and OPs are appropriately informed by scientific evidence. We provide a conceptual model of how different kinds of science-based activities can feed into legislative and policy cycles, ranging from actionable science that can inform decision-making windows to retrospective analyses that can inform future regulations. We identify a series of major gaps and barriers that challenge the successful linking of environmental science and law. These include (1) the different time frames for science and law, (2) the different standards of proof for scientific and legal (un)certainty, (3) the need for effective scientific communication, (4) the multijurisdictional (federal, provincial, and Indigenous) nature of environmental law, and (5) the different ethical obligations of law and science. Addressing these challenges calls for bidirectional learning among scientists and lawyers and more intentional collaborations at the law–science interface