Impact of the COVID-19 pandemic on family carers of those with profound and multiple intellectual disabilities: perspectives from UK and Irish Non-Governmental Organisations.

BACKGROUND: Family carers of people with profound and multiple intellectual disabilities (PMID) experienced a reduction in healthcare services due to the COVID-19 pandemic. Many subsequently turned to Non-Governmental Organisations who worked to support families. However, little research has sought to capture the experiences of family carers or identify effective interventions which might support them. To address these concerns we explored the views of Non-Governmental sector workers across the UK and Ireland who supported families people with PMID during the COVID-19 pandemic. We also sought to explore their views on the characteristics of online support programmes for family carers.  METHODS: This study employed a qualitative design using focus groups with participants (n = 24) from five Non-Governmental Organisations across the UK and Ireland. A focus group guide included questions on challenges, supports, coping and resources which helped during lockdown restrictions. Focus groups were held online, were audio recorded and transcribed verbatim. The resulting transcripts were pseudonymised and subjected to thematic analysis. FINDINGS: Four themes were identified (i) 'mental and emotional health', (ii) 'they who shout the loudest' (fighting for services), (iii) 'lack of trust in statutory services' and (iv) 'creating an online support programme'. Mental and emotional health emerged as the most prominent theme and included three subthemes named as 'isolation', 'fear of COVID-19' and 'the exhaustion of caring'. CONCLUSIONS: The COVID-19 pandemic has increased the vulnerability of family carers who were already experiencing difficulties in accessing services and supports for their families. While Non-Governmental Organisations have been a crucial lifeline there is urgent need to design services, including online support programmes, in partnership with family carers which adequately address their needs.

Identifying patients' support needs following critical illness: a scoping review of the qualitative literature.

BACKGROUND: Intensive care survivors suffer chronic and potentially life-changing physical, psychosocial and cognitive sequelae, and supporting recovery is an international priority. As survivors' transition from the intensive care unit to home, their support needs develop and change. METHODS: In this scoping review, we categorised patients' support needs using House's Social Support Needs framework (informational, emotional, instrumental, appraisal) and mapped these against the Timing it Right framework reflecting the patient's transition from intensive care (event/diagnosis) to ward (stabilisation/preparation) and discharge home (implementation/adaptation). We searched electronic databases from 2000 to 2017 for qualitative research studies reporting adult critical care survivors' experiences of care. Two reviewers independently screened, extracted and coded data. Data were analysed using a thematic framework approach. RESULTS: From 3035 references, we included 32 studies involving 702 patients. Studies were conducted in UK and Europe (n = 17, 53%), Canada and the USA (n = 6, 19%), Australasia (n = 6, 19%), Hong Kong (n = 1, 3%), Jordan (n = 1, 3%) and multi-country (n = 1, 3%). Across the recovery trajectory, informational, emotional, instrumental, appraisal and spiritual support needs were evident, and the nature and intensity of need differed when mapped against the Timing it Right framework. Informational needs changed from needing basic facts about admission, to detail about progress and treatments and coping with long-term sequelae. The nature of emotional needs changed from needing to cope with confusion, anxiety and comfort, to a need for security and family presence, coping with flashbacks, and needing counselling and community support. Early instrumental needs ranged from managing sleep, fatigue, pain and needing nursing care and transitioned to needing physical and cognitive ability support, strength training and personal hygiene; and at home, regaining independence, strength and return to work. Appraisal needs related to obtaining feedback on progress, and after discharge, needing reassurance from others who had been through the ICU experience. CONCLUSIONS: This review is the first to identify the change in social support needs among intensive care survivors as they transition from intensive care to the home environment. An understanding of needs at different transition periods would help inform health service provision and support for survivors.

High-fat, high-fructose, high-cholesterol feeding causes severe NASH and cecal microbiota dysbiosis in juvenile Ossabaw swine.

Pediatric obesity and nonalcoholic steatohepatitis (NASH) are on the rise in industrialized countries, yet our ability to mechanistically examine this relationship is limited by the lack of a suitable higher animal models. Here, we examined the effects of high-fat, high-fructose corn syrup, high-cholesterol Western-style diet (WD)-induced obesity on NASH and cecal microbiota dysbiosis in juvenile Ossabaw swine. Juvenile female Ossabaw swine (5 wk old) were fed WD (43.0% fat; 17.8% high-fructose corn syrup; 2% cholesterol) or low-fat diet (CON/lean; 10.5% fat) for 16 wk ( n = 6 each) or 36 wk ( n = 4 each). WD-fed pigs developed obesity, dyslipidemia, and systemic insulin resistance compared with CON pigs. In addition, obese WD-fed pigs developed severe NASH, with hepatic steatosis, hepatocyte ballooning, inflammatory cell infiltration, and fibrosis after 16 wk, with further exacerbation of histological inflammation and fibrosis after 36 wk of WD feeding. WD feeding also resulted in robust cecal microbiota changes including increased relative abundances of families and genera in Proteobacteria ( P < 0.05) (i.e., Enterobacteriaceae, Succinivibrionaceae, and Succinivibrio) and LPS-containing Desulfovibrionaceae and Desulfovibrio and a greater ( P < 0.05) predicted microbial metabolic function for LPS biosynthesis, LPS biosynthesis proteins, and peptidoglycan synthesis compared with CON-fed pigs. Overall, juvenile Ossabaw swine fed a high-fat, high-fructose, high-cholesterol diet develop obesity and severe microbiota dysbiosis with a proinflammatory signature and a NASH phenotype directly relevant to the pediatric/adolescent and young adult population.

Achieving stringent CR is essential before reduced-intensity conditioning allogeneic hematopoietic cell transplantation in AML.

Reduced-intensity conditioning (RIC) allogeneic hematopoietic cell transplantation (allo-HCT) can cure patients with AML in CR. However, relapse after RIC allo-HCT may indicate heterogeneity in the stringency of CR. Strict definition of CR requires no evidence of leukemia by both morphologic and flow cytometric criteria. We re-evaluated 85 AML patients receiving RIC allo-HCT in CR to test if a strict definition of CR had direct implications for the outcome. These patients had leukemia immunophenotype documented at diagnosis and analyzed at allo-HCT. Eight (9.4%) had persistent leukemia by flow cytometric criteria at allo-HCT. The patients with immunophenotypic persistent leukemia had a significantly increased relapse (hazard ratio (HR): 3.7; 95% confidence interval (CI): 1.3-10.3, P=0.01) and decreased survival (HR: 2.9; 95% CI: 1.3-6.4, P<0.01) versus 77 patients in CR by both morphology and flow cytometry. However, the pre-allo-HCT bone marrow (BM) blast count (that is, 0-4%) was not significantly associated with risks of relapse or survival. These data indicate the presence of leukemic cells, but not the BM blast count affects survival. A strict morphologic and clinical lab flow cytometric definition of CR predicts outcomes after RIC allo-HCT, and therefore is critical to achieve at transplantation.

Weight-loss-associated changes in bone mineral density and bone turnover after partial weight regain with or without aerobic exercise in obese women.

BACKGROUND/OBJECTIVES: Moderate, long-term weight loss results in the loss of bone mass in overweight or obese premenopausal women. However, whether these changes persist during weight maintenance or regain remains to be determined. SUBJECTS/METHODS: Overweight or obese (body mass index: 25.8-42.5 kg/m(2)) women (n=40) with at least two risk factors for the metabolic syndrome participated in this 12-month study that examined the effects of prescribed weight loss and regain, with or without exercise, on bone turnover and on bone mineral density (BMD) in a subset of participants (n=24). During the first 6 month, participants lost ≈ 10% of their initial body weight via energy restriction and supervised aerobic exercise. Following weight loss, participants were randomly assigned to either an exercise or a no exercise treatment for the regain (+50% of weight lost) phase. A one-way (time) repeated measures one-factor analysis of variance (RMANOVA) tested the effects of weight loss on BMD and bone turnover, and a two-way RMANOVA (time, exercise) was used to examine the effects of exercise during weight regain. RESULTS: Hip (P=0.007) and lumbar spine (P=0.05) BMD decreased with weight loss, and remained reduced after weight regain with or without exercise. Likewise, the weight-loss-associated increases in osteocalcin (P<0.001) and C-terminal peptide of type I collagen (P<0.001) persisted following weight regain, independent of exercise. CONCLUSIONS: The results of the present study, which is the first to examine changes in bone mass and turnover during carefully controlled weight regain, suggest that weight-loss-induced perturbations in bone mass and turnover persist after partial weight regain, regardless of whether regular weight-bearing aerobic exercise was continued.

Healthcare professionals' attitudes towards traumatic brain injury (TBI): the influence of profession, experience, aetiology and blame on prejudice towards survivors of brain injury.

PRIMARY OBJECTIVE: To investigate the attitudes of healthcare professionals towards individuals with traumatic brain injury (TBI) and their relationship to intended healthcare behaviour. RESEARCH DESIGN: An independent groups design utilized four independent variables; aetiology, group, blame and gender to explore attitudes towards survivors of brain injury. The dependent variables were measured using the Prejudicial Evaluation and Social Interaction Scale (PESIS) and Helping Behaviour Scale (HBS). METHODS AND PROCEDURES: A hypothetical vignette based methodology was used. Four hundred and sixty participants (131 trainee nurses, 94 qualified nurses, 174 trainee doctors, 61 qualified doctors) were randomly allocated to one of six possible conditions. MAIN OUTCOMES AND RESULTS: Regardless of aetiology, if an individual is to blame for their injury, qualified healthcare professionals have more prejudicial attitudes than those entering the profession. There is a significant negative relationship between prejudice and helping behaviour for qualified healthcare professionals. CONCLUSIONS: Increased prejudicial attitudes of qualified staff are related to a decrease in intended helping behaviour, which has the potential to impact negatively on an individual's recovery post-injury.

'To be accepted as normal': Public understanding and misconceptions concerning survivors of brain injury.

PRIMARY OBJECTIVE: To determine the views held by the general public in Northern Ireland towards survivors of brain injury. RESEARCH DESIGN: Qualitative semi-structured interviews. METHODS AND PROCEDURES: Interviews were conducted with 16 members of the general public. Ten questions addressed issues such as the role of survivors of brain injury in society, the challenges they face and the characteristics ascribed to them. MAIN OUTCOMES AND RESULTS: When asked to describe someone with a brain injury participants typically used negative labels and identified the most common problems as relating to physical, cognitive, emotional and social functioning. There was a general failure to recognize that brain injury was a 'hidden' disability, with most participants expecting some outward manifestation. Relatively few previous studies have employed a qualitative approach to explore how the public perceives survivors of brain injury. CONCLUSION: Members of the public have an increasing awareness of the challenges faced by survivors of brain injury. However, in spite of this, perceptions of aggressiveness, dependency and unhappiness were still evident, suggesting potential problems in reintegrating survivors of brain injury with their communities.

The influence of aetiology and blame on prejudice towards survivors of brain injury.

The purpose of the present work was to investigate if a hierarchy of aetiology exists which would influence attitudes towards survivors of brain injury. An independent groups design utilised four independent variables; aetiology (measured at five levels: 'Road Traffic Accident' (RTA), 'Alcohol', 'Drug Use', 'Aneurysm' and 'Recreation'), blame (blame and no-blame), group (psychology students and members of the public) and gender to explore attitudes towards survivors of brain injury. The dependent variables were measured using the Prejudicial Evaluation Scale (PES) and Social Interaction Scale (SIS). Three hundred and twenty-five participants (173 students and 152 members of the public) were randomly allocated to 1 of 10 possible conditions. Among individuals who contributed to receiving their injury greater prejudice was displayed towards those in the 'Drugs' condition followed by 'Recreation', 'RTA', 'Alcohol' and 'Aneurysm'. Findings suggest that a hierarchy of aetiology exists, which results in prejudicial attitudes, and is influenced by issues of blame.

Attitudes of children towards peers with acquired brain injury (ABI).

RESEARCH OBJECTIVE: Children with acquired brain injury (ABI) can experience severe problems in establishing peer relationships. The attitudes peers hold toward a child with an ABI can significantly impact on their willingness to befriend. The present work sought to investigate the attitudes peers hold toward a fictional child with ABI. METHODS AND PROCEDURES: Fifty children from a primary school were compared against a similar number from a secondary school. Gender was evenly split across both groups. A vignette describing a young boy acquiring a brain injury, and his subsequent change in behaviour, was presented to the children. The Friendship Activity Scale (FAS) was then used to judge how likely the children were to befriend the fictional character. OUTCOMES AND RESULTS: Results showed a statistically significant interaction between gender and age [F(1, 96) 6.285, p = 0.014] with older males expressing more positive attitudes than younger males. CONCLUSION: The study suggests that children with ABI are more likely to experience negative attitudes in primary school, and concludes in calling for additional research to more fully explore the social experience of children with ABI.

Violent, caring, unpredictable: public views on survivors of brain injury.

The purpose of the present work was to investigate how members of the public perceived survivors of brain injury. A 20-item list of attributes that could be used to describe characteristics of survivors of brain injury were given to 323 participants. One hundred and sixty-nine psychology students and 154 members of the public agreed to take part in the study. The effects of group (student and public), gender and socioeconomic status (low, moderate and high) on the attributes were assessed. Multivariate analysis of variance showed a statistically significant difference between the two groups with students holding more positive perceptions on 15 out of the 20 attributes. No effects of gender or socioeconomic status were found. The research suggests that members of the public hold less positive views on survivors of brain injury in respect to intellectual competency, ability to care and trustworthiness when compared to students.

Exploring eye movement analysis as a measure of selective visual attention in brain injured individuals.

PRIMARY OBJECTIVE: To investigate the utility of using a new method of assessment for deficits in selective visual attention (SVA). METHODS AND PROCEDURES: An independent groups design compared six participants with brain injuries with six participants from a non-brain injured control group. The Sensomotoric Instruments Eye Movement system with remote eye-tracking device (eye camera) and two sets of eight stimuli were employed to determine if the camera would be a sensitive discriminator of SVA in these groups. MAIN OUTCOMES AND RESULTS: The attention profile displayed by the brain injured group showed that they were slower, made more errors, were less accurate and more indecisive than the control group. CONCLUSIONS: The utility of eye movement analysis as an assessment method was established, with implications for rehabilitation requiring further development.

Public attitudes towards survivors of brain injury.

PRIMARY OBJECTIVE: To explore the effects of religious identity, gender and socioeconomic status (SES) on public attitudes towards survivors of brain injury. RESEARCH DESIGN: An independent groups design was used to compare the attitudes of Northern Irish participants. METHODS AND PROCEDURES: The participants were asked to complete a modified form of the Community Attitudes to Mental Illness scale. The new questionnaire replaced the original scales' emphasis on mental illness with that of brain injury. Complete data was available for 179 participants for the religious identity and gender analysis and 124 for gender and SES. Analyses of variance were conducted on these variables. OUTCOMES AND RESULTS: Significant differences between male and female attitudes were found along with significant interactions between religious identity and gender and SES and gender. CONCLUSIONS: Religious, economic and gender-based divisions in society affect attitudes towards survivors of brain injury.

Attitudes towards behavioural versus organic acquisition of brain injury.

PRIMARY OBJECTIVE: To investigate the public's attitudes towards survivors of brain injury in Northern Ireland. RESEARCH DESIGN: Four hypothetical vignettes were constructed to test how the acquisition of a brain injury impacted on people's attitudes. The stories of protagonists that they either acquired their injury through organic (e.g. haemorrhage) means or in some self-initiated (e.g. brawl) behaviour. The gender of the protagonists was varied to examine differences in attitudes to males and females. METHODS AND PROCEDURES: Adapted versions of the Prejudicial Evaluation Scale (PES) and Social Interaction Scale (SIS) were administered to 96 university students. MAIN OUTCOMES AND RESULTS: The data was analysed using three 2 x 2 between subjects ANOVAs and showed that there was no significant main effect of gender, a highly significant effect of injury on negative attitudes (F(1, 92) = 68.30, p < 0.001], amount of desired social interaction [F(1, 92) = 46.27, p < 0.001] and willingness to help [F(1, 92) = 44.66, p < 0.001]. CONCLUSION: The perception that an individual's behaviour contributed to their injury may lead to stigmatization and its negative consequences.

A technique for quantifying the response of seated individuals to dynamic perturbations.

A technique is presented for monitoring the seated postural stability and control of human subjects. Estimates are made of the locations of the subject's center of pressure (CP(S)) and projection of the center of mass (CM(NP)) from moment balance equations using measured force and acceleration data. The CP(S) and CM(NP) indices describe the stability of the subject, independent of the chair, even in the presence of perturbations. The measurement system was evaluated for both rigid objects and human subjects situated in a wheelchair undergoing displacement. Estimated CM(NP) was within +/-5 mm of the actual value for static loads. For human subjects, the average correlation coefficient between the estimated CM(NP) signal and that computed from video data was 0.90; however, transient overestimation of displacement was seen during subject acceleration. The technique could help to better assess seated stability in dynamic environments, such as those experienced by wheelchair users in motor vehicles.

Lead poisoning from retained bullets. Pathogenesis, diagnosis, and management.

Lead intoxication (plumbism) from retained bullets has rarely been reported but may be fatal if unrecognized. Bullets lodged within joint spaces or pseudocysts are more likely to develop this complication, although patients with retained missiles in other locations may also be at risk. Subtle findings such as the occurrence of unexplained anemia, abdominal colic, nephropathy, or neurologic deterioration in patients with retained missiles may suggest consideration of plumbism. An intercurrent metabolic stress such as infection, endocrinopathy, or alcoholism may be a precipitating factor. Among the various diagnostic studies available, mass spectrometric stable isotope dilution analysis may be the most reliable. It is important to employ chelation therapy prior to any operative intervention. This will reduce the mobilization of lead from bone during or following the surgical procedure.