scholarly journals Availability of Services and Caregiver Burden: Supporting Individuals With Neurogenetic Conditions During the COVID-19 Pandemic

2021 ◽  
pp. 088307382110012
Author(s):  
Michelle Kowanda ◽  
Lindsey Cartner ◽  
Catherine Kentros ◽  
Alexa R. Geltzeiler ◽  
Kaitlyn E. Singer ◽  
...  

Because of the COVID-19 pandemic, in-person services for individuals with neurodevelopmental disabilities were disrupted globally, resulting in a transition to remote delivery of services and therapies. For individuals with neurogenetic conditions, reliance on nonclinical caregivers to facilitate all therapies and care was unprecedented. The study aimed to (1) describe caregivers’ reported impact on their dependent’s services, therapies, medical needs, and impact on themselves as a result of the COVID-19 pandemic and (2) assess the relationship between the extent of disruption of services and the degree of self-reported caregiver burden. Two online questionnaires were completed by caregivers participating in Simons Searchlight in April and May 2020. Surveys were completed by caregivers of children or dependent adults with neurodevelopmental genetic conditions in Simons Searchlight. Caregivers reported that the impact of the COVID-19 pandemic moderately or severely disrupted services, therapies, or medical supports. The majority of caregivers were responsible for providing some aspect of therapy. Caregivers reported “feeling stressed but able to deal with problems as they arise,” and reported lower anxiety at follow-up. Caregivers reported that telehealth services were not meeting the needs of those with complex medical needs. Future surveys will assess if and how medical systems, educational programs, therapists, and caregivers adapt to the challenges arising during the COVID-19 pandemic.

Circulation ◽  
2012 ◽  
Vol 125 (suppl_10) ◽  
Author(s):  
Jaime Céspedes ◽  
German Briceño ◽  
Michael Farkouh ◽  
Rajesh Vedanthan ◽  
Martha Leal ◽  
...  

Introduction: Educational programs for children can increase uptake of healthy lifestyle behaviors. However, the impact of educational programs in preschool-aged children in low- and middle-income countries is not known. We conducted a five month educational intervention in preschool facilities (PF) in Bogota, Colombia, to assess changes in preschooler’s knowledge, attitudes and habits (KAH) towards healthy eating and living an active lifestyle. Methods: We conducted a cluster, randomized, controlled trial, and randomly assigned 14 PF in Bogota to a five-month educational intervention (7 PF) or to usual curriculum (7 PF). The intervention included classroom activities and use of printed material and videos. A total of 1216 pre-school children, 928 parents, and 120 teachers participated. A structured survey was used to evaluate changes in KAH with a weighted total score (WTS). The primary outcome was change in children's WTS, and the secondary outcomes were change in parents’ and teachers' WTS. The control PF were provided the intervention after the initial evaluation. To assess sustainability, we evaluated both intervention and control groups at 18 months. Results: At 6 months, children in the intervention group showed 10.9% increase in WTS vs. 5.3% in controls, p<0.001, after adjustment for cluster, sex, age and teachers' educational level. Among parents, the equivalent results were 8.9% and 3.1%, respectively, p< 0.001, and among teachers 9.4% and 2.5%, p=0.06. At the 18-month extended follow-up, both the intervention and control children showed a significant further increase in WTS, p<0.001 (Figure 1). In parents and teachers in the intervened group, there was no significant increase in WTS, p=0.7417, and p=0.1197. In the control group, there was an increase in WTS in teachers but not in parents, p=0.001, and p=0.4239. Conclusion: A preschool based intervention, aimed at changing KAH related to healthy diet and active lifestyle, is feasible, efficacious and sustainable up to 18 months in very young children in Colombia.


2021 ◽  
pp. 027347532110351
Author(s):  
Adam C. Merkle ◽  
Linda K. Ferrell ◽  
O. C. Ferrell ◽  
Joe F. Hair

Marketing curricula are experiencing a digital disruption as e-books and other electronic educational resources replace print textbooks. This study investigates student perceptions about the effectiveness of print textbooks and e-books. Specifically, we focus on the perceived effectiveness of e-books and the impact on student engagement. A field-based quasi-experiment was conducted with a sample of 259 students in the Fall semester, and a follow-up sample of 395 students in the Spring semester. The results show a diverse impact of e-books on student engagement. Some aspects of engagement are positively affected while other aspects of student engagement exhibit a neutral or negative leaning impact. The findings also reflect significant variation in e-book effectiveness depending on the course. Finally, we find that e-books moderate the relationship between textbook effectiveness and academic performance engagement. Highly effective e-books result in higher levels of academic performance engagement. Collectively these findings shed light on the current situation and provide a foundation for additional research to further our understanding about e-book effectiveness and its relationship to student engagement.


2017 ◽  
Vol 48 (4) ◽  
pp. 629-641 ◽  
Author(s):  
T. Ford ◽  
C. Parker ◽  
J. Salim ◽  
R. Goodman ◽  
S. Logan ◽  
...  

BackgroundChildren with poor mental health often struggle at school. The relationship between childhood psychiatric disorder and exclusion from school has not been frequently studied, but both are associated with poor adult outcomes. We undertook a secondary analysis of the British Child and Adolescent Mental Health Surveys from 2004 and its follow-up in 2007 to explore the relationship between exclusion from school and psychopathology. We predicted poorer mental health among those excluded.MethodPsychopathology was measured using the Strengths and Difficulties Questionnaire, while psychiatric disorder was assessed using the Development and Well-Being Assessment and applying Diagnostic and Statistical Manual of Mental Disorders Fourth Edition (DSM IV) criteria. Exclusion from school and socio-demographic characteristics were reported by parents. Multi-variable regression models were used to examine the impact of individual factors on exclusion from school or psychological distress.ResultsExclusion from school was commoner among boys, secondary school pupils and those living in socio-economically deprived circumstances. Poor general health and learning disability among children and poor parental mental health were also associated with exclusion. There were consistently high levels of psychological distress among those who had experienced exclusion at baseline and follow-up.ConclusionsWe detected a bi-directional association between psychological distress and exclusion. Efforts to identify and support children who struggle with school may therefore prevent both future exclusion and future psychiatric disorder.


Author(s):  
Guy J Curtis ◽  
Razma Popal

In this paper we report the results of a survey of student plagiarism carried out at the University of Western Sydney (UWS). This survey examined rates of plagiarism,understanding of plagiarism, perceived seriousness of plagiarism, and factors thought to be related to plagiarism such as the pressure students place on themselves to achieve high grades. Students who achieved higher grades plagiarised less than students who had lower grades. Perceived seriousness of plagiarism, students' competitiveness, and students' self-imposed pressure to achieve high grades were correlated negatively with incidence of plagiarism. Perceived seriousness of plagiarism mediated the relationship between self-imposed pressure to achieve good grades and rates of plagiarism. The data from the present survey (conducted in 2009) were compared with data from comparable students who completed the same survey at UWS five years earlier (2004). The comparison between the 2009 and 2004 data suggested a reduction in prevalence of plagiarism and an increase in both understanding and perceived seriousness of plagiarism between 2004 and 2009. We suggest that plagiarism may be reduced by means of educational programs that promote the perception of plagiarism as a serious academic integrity issue.


2021 ◽  
Vol 10 (3) ◽  
Author(s):  
Hasan Yılmaz ◽  
Coşkun Arslan ◽  
Emel Arslan

The purpose of this study is to examine the impact of mothers’ and teachers’ testimonies that conflict with scientific facts and scientific explanations on kindergartners’ judgments. The participants consisted of 104 young children in Şanlıurfa province in Turkey. Their ages ranged from 48 to 79 months, with a mean age of 61.48 months (SD = 5.58). The participants were randomly assigned to the following four groups: 1) Scientific explanation followed by teacher’s testimony, 2) teacher’s testimony; 3) scientific explanation followed by mother’s testimony, 4) mother’s testimony. The children responded to a question about a scientific fact. After the response, they watched their mothers’ or teachers’ testimonies which contradict the scientific fact. Findings revealed that when a scientific explanation was not provided, the children tended to show deference to their teachers’ and especially mothers’ testimony. A week later, a follow-up measurement revealed that this impact did not last a week.


2021 ◽  
Author(s):  
Xu Yang ◽  
Yan Zhu ◽  
Linshan Zhang ◽  
Likun Wang ◽  
Yuanhong Mao ◽  
...  

Abstract Background: The initial computed tomography (CT) blend sign has been used as an imaging marker to predict haematoma expansion and poor outcomes in patients with a small volume intracerebral haemorrhage (ICH). However, the relationship between the blend sign and outcomes remains elusive. The present study aimed to retrospectively measure the impact of initial CT blend signs on short-term outcomes in patients with hypertensive ICH who underwent stereotactic minimally invasive surgery (sMIS). Methods: We enrolled 242 patients with spontaneous ICH. Based on the initial CT features, the patients were assigned to a blend sign group (91 patients) or a nonblend sign (control) group (151 patients). The NIHSS, GCS and mRS were used to measure the effects of sMIS. The rates of severe pulmonary infection and cardiac complications were also compared between the two groups. Results: No significant differences in NIHSS and GCS scores were observed between the two groups. The proportion of patients with good outcomes during follow-up was not different between the two groups. The rate of rehaemorrhaging increased in the blend sign group. No significant differences in severe pulmonary infections and cardiac complications were noted between the two groups. Conclusions: The initial CT blend sign was not associated with poor outcomes in patients with hypertensive ICH who underwent sMIS. ICH patients with CT blend signs should undergo sMIS if they are suitable candidates for surgery.


Circulation ◽  
2008 ◽  
Vol 118 (suppl_18) ◽  
Author(s):  
Chisato Izumi ◽  
Shuichi Takahashi ◽  
Sumiyo Hashiwada ◽  
Koji Hanazawa ◽  
Jiro Sakamoto ◽  
...  

Atheromatous plaques of the aorta have been regarded as a potential source of emboli, but there are few reports about the frequency and prognosis of patients with thoracic aortic plaques and about the relationship between plaque morphology and prognosis, especially long-term follow-up data. The purpose of this study is to clarify the impact of aortic atheromatous plaque morphology on survival rate and the incidence of subsequent embolic event. We retrospectively investigated 1570 consecutive patients who underwent transesophageal echocardiography between 1991 and 2003. The presence of severe plaque (>5mm in thickness) in the thoracic aorta were examined. Survival rate and subsequent embolic event rate were compared between patients with severe plaque and 109 control patients. The control patients were selected from the patients who showed no or mild plaque and as they were matched for age, gender, and risk factors of atherosclerosis with the patients with severe aortic plaque. The relationship between aortic plaque morphology and prognosis was also estimated, according to the presence of ulceration, calcification, hypoechoic plaques, and mobile plaques. Mean follow-up period was 8.7 years. Among 1570 patients, severe aortic plaque was detected in 92 patients (5.9%). These 92 patients showed significantly low survival rate and high subsequent embolic event rate compared with control patients (8-year survival rate, 50% vs 87%, 8-year embolic event free rate, 57% vs 90%). The relative risk of death was significantly increased for ulceration (2.4, 95% CI;1.1–5.2) and the relative risk of embolic events was significantly increased for mobile plaques (2.2, 95% CI;1.1–5.1). In conclusion, aortic plaque > 5mm in thickness was a predictor of a low survival rate and a high embolic event rate. Among patients with aortic plaque >5mm in thickness, ulceration was a predictor of a low survival rate and mobile plaque was a predictor of a high embolic event rate.


2019 ◽  
Vol 32 (10) ◽  
pp. 647 ◽  
Author(s):  
Rosana Maia ◽  
Inês Neves ◽  
António Morais ◽  
Henrique Queiroga

Introduction: The relationship between cancer and thromboembolic events has been known for a long time. Lung and venous thromboembolism are frequent complications of lung cancer and its treatment, being a great cause of morbidity and mortality. We pretend to establish the relationship between lung and venous thromboembolism and lung cancer, describe patient characteristics and analyze the impact in the survival and prognosis.Material and Methods: It was a retrospective study. All research subjects were selected from lung cancer patients with a newly diagnosed lung and venous thromboembolism event admitted to Hospital S. João, between January 2008 and December 2013 and were followed until December 2014. Statistical analysis was performed with SPSS.Results: From the search, we obtained 113 patients. The majority was male, smokers or ex-smokers, and adenocarcinoma was the most frequent histologic type, being diagnosed mostly in advanced stages. We noticed that the median time between lung cancer diagnosis and lung venous thromboembolism was 2.9 months. In 24 patients (21.4%), the lung cancer diagnosis occurred after the lung and venous thromboembolism event and in 86 patients (76.8%), it occurred before the event. After a median follow up of 1.4 months, 107 (94.7%) patients died, 1 (0.9%) was lost to follow-up and 5 (4.4%) were still alive. The median survival rate was 1.5 months.Discussion: The diagnosis of lung and venous thromboembolism in patients with lung cancer is associated with bad prognosis. It occurs most frequently in patients with advanced disease, in the first months after lung cancer diagnosis and after beginning chemotherapy.Conclusion: Disease progression is an independent predictor with negative impact in overall survival.


2019 ◽  
Vol 23 (4) ◽  
pp. 683-690 ◽  
Author(s):  
Katrina Koehn ◽  
Taylor McLinden ◽  
Alexandra B Collins ◽  
Patrick McDougall ◽  
Rosalind Baltzer-Turje ◽  
...  

AbstractObjective:Food insecurity, or self-reports of inadequate food access due to limited financial resources, remains prevalent among people living with HIV (PLHIV). We examined the impact of food insecurity on combination antiretroviral therapy (cART) adherence within an integrated care programme that provides services to PLHIV, including two meals per day.Design:Adjusted OR (aOR) were estimated by generalized estimating equations, quantifying the relationship between food insecurity (exposure) and cART adherence (outcome) with multivariable logistic regression.Setting:We drew on survey data collected between February 2014 and March 2016 from the Dr. Peter Centre Study based in Vancouver, Canada.Participants:The study included 116 PLHIV at baseline, with ninety-nine participants completing a 12-month follow-up interview. The median (quartile 1–quartile 3) age was 46 (39–52) years at baseline and 87 % (n 101) were biologically male at birth.Results:At baseline, 74 % (n 86) of participants were food insecure (≥2 affirmative responses on Health Canada’s Household Food Security Survey Module) and 67 % (n 78) were adherent to cART ≥95 % of the time. In the adjusted regression analysis, food insecurity was associated with suboptimal cART adherence (aOR = 0·47, 95 % CI 0·24, 0·93).Conclusions:While food provision may reduce some health-related harms, there remains a relationship between this prevalent experience and suboptimal cART adherence in this integrated care programme. Future studies that elucidate strategies to mitigate food insecurity and its effects on cART adherence among PLHIV in this setting and in other similar environments are necessary.


2000 ◽  
Vol 30 (1) ◽  
pp. 187-194 ◽  
Author(s):  
T. K. J. CRAIG ◽  
S. HODSON

Background. While there is considerable evidence of a high prevalence of psychiatric disorder among homeless youth, much less is known about its long-term course or the impact it may have on accommodation outcomes.Method. A random sample of 161 homeless people 16–21 years of age were recruited from consecutive attendees at two of London's largest facilities for homeless young people. These young people were traced and re-interviewed a year later to examine accommodation, occupation and health outcomes.Results. A total of 107 (67%) people were successfully re-interviewed. Psychiatric disorder was identified in 55% at follow up. Two thirds of those with a psychiatric disorder at index interview remained symptomatic at follow-up. Persistence of psychiatric disorder was associated with adverse childhood experiences and rough sleeping. Satisfactory accommodation outcomes were achieved by 45 subjects (42%). Better accommodation outcomes were associated with three variables measured at the index assessment: ethnic minority status; educational achievement; and, the presence of accommodation plans negotiated through a resettlement agency. While psychiatric disorder at index interview was not associated with accommodation outcome, persistent substance use in the follow-up year was associated with poor accommodation outcome. Over half of the young people had been involved in petty crime and just under a third had been convicted for more serious criminal activity. Offending and antisocial behaviour in the follow-up year were related to a history of conduct disorder, persistent substance abuse and poor accommodation outcomes.Conclusions. Young homeless people are characterized by multiple social and medical needs. Successful resettlement of this population may depend upon integrated services that address problems of persisting substance use and mental illness as well as the immediate housing need.


Sign in / Sign up

Export Citation Format

Share Document