The eHealth well-being service for patients with SMA and other neuromuscular disorders during the COVID-19 emergency
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AbstractThe aim of the Wellbeing and Emotional Activities (WEA) project was to sustain families, to reduce the impact of COVID-19 and to create web meetings using Microsoft Teams during which children with muscular dystrophies could interact, have fun and learn. The goals of this study were to compare the perception of service users, both from the point of view of parents and children, measured with a users’ satisfaction questionnaire, and to correlate if the level of satisfaction of the children could be correlated to trait self-concepts of the Piers-Harris Children’s Self-Concept Scale. Eleven children with neuromuscular disorders participated in the project. The WEA program included 12 web meetings, consisting of 1 hour, 3 times a week over a 1-month period. It included game activities aimed at enhancing cognitive functions, promoting critical thinking and managing emotions. Results indicated that both children and parents perceived the same level of satisfaction. Correlations between children’s satisfaction in life and the self-concept scale were found. This study highlights the benefits and disadvantages of the use of a WEA web-based program from the service users’ perspective.
Persian version of the Center for Epidemiologic Studies Depression Scale: Factor structure and psychometric properties in patients with Chronic Low Back Pain
AbstractThe aim of the current study was to investigate the factor structure, reliability, and validity of the Center for Epidemiologic Studies Depression Scale in patients with Chronic Low Back Pain. The data of 100 patients was obtained through consecutive sampling in the north of Iran. As a first step, an Exploratory Factor Analysis was conducted and the internal consistency reliability was calculated. A test-retest reliability was further evaluated after one month (n = 20). Lastly, three competing models with 10 items and one factor, 10 items and two factors, and 8 items and one factor were tested through Confirmatory Factor Analysis with another separate sample group (n = 151). In order to determine the validity of the criterion used, the patients were asked to complete the Visual Analogue Scale, the 18-item Roland-Morris Disability Questionnaire, and the 6-item Pain Self-efficacy Scale. Two factors were extracted from the Center for Epidemiologic Studies Depression Scale, namely the depressed affect and the positive affect. The test-retest reliability was obtained equals to .71. The scores of the Center for Epidemiologic Studies Depression Scale were correlated with the 18-item Roland-Morris Disability Questionnaire and the 6-item Pain Self-efficacy Scale in the expected positive and negative directions, respectively. The Confirmatory Factor Analysis demonstrated that the most appropriate structure for patients with Chronic Low Back Pain had one factor (depressed affect) and 8 items. The Persian version and the 8-item Center for Epidemiologic Studies Depression Scale provides repeatable and reliable results with satisfactory validity coefficients.
Age and disease duration as factors affecting the Quality of Life of caregivers of Thalassemia patients in Indonesia
AbstractThalassemia is a chronic disease that disrupts caregivers’ Quality of Life (QoL), causing physical, emotional, social, and financial burdens. The aim of this study was to determine the relationship between several risk factors affecting the QoL of caregivers of thalassemia patients. A comparative analytic cross-sectional study was carried out through direct telephone interviews from 97 subjects, who met the inclusion criteria, to assess the risk factors and the QoL using the TranQoL questionnaire. The subject response rate was 70% and the QoL with the lowest proportion was found in the physical health dimension. The correlation of the risk factors between child age and disease duration in the emotional dimension was significant, as well as the relationship between income level and the QoL in the family dimension. Therefore, QoL intervention is required as a form of prevention and early detection of parental psychosocial problems through telemedicine counseling in pandemic situations.
Effects of self-controlled feedback on learning a sports skill in children with ADHD: Performance under pressure
AbstractLearning a sports skill is an important research topic considering the participation of children with ADHD in comprehensive sports activities. The aim of the present study was to investigate the effects of self-controlled feedback on the learning of a football chip pass skill in children with ADHD and to evaluate the resilience of the possible improvement in performance under competitive pressure. The participants were 30 children, aged 8-10 years old, who were assigned to one of two research groups, namely the self-controlled and the yoked group. After the pre-test, the groups participated in 5 acquisition sessions and were exposed to the specific treatment of each experimental group. Forty-eight hours after the acquisition test, the retention test and transfer under pressure were conducted. The results of the mixed ANOVA showed that the self-controlled group had a significantly higher performance in the learning task than the yoked group. This advantage was persistent in retention, but faded out in pressure conditions for both groups. The findings of this study show that children with ADHD experience a severe decline in performance under pressure due to their cognitive and processing characteristics.
Non-pharmacological interventions for people with Major Neurocognitive Disorders: What suggestions come from Applied Behavior Analysis? An overview
AbstractMajor Neurocognitive Disorder (M-NCD) or Dementia represents one of the major health problems in elderly individuals. To date, a cure for dementia has not been found; non-pharmacological interventions have been implemented to improve the cognitive and behavioral aspects of the disorder as well as the quality of life of people with M-NCD. Applied Behavior Analysis (ABA) is a scientific approach based on Behavioral Psychology, whose principles and procedures are included in many different educational and rehabilitation treatments. The aim of ABA is to induce evidence-based changes in social significant behaviors. To date, only a handful of studies have been conducted concerning ABA treatments applied to neurocognitive disorders. The aim of this overview was to summarize the results obtained in the studies published in the literature, which used ABA procedures to treat people with M-NCD and that were adopted, in particular, either for the assessment and modification of challenging behaviors or for the increase of skills.
Inclusive education in children with Mucopolysaccharidosis IV-A: Case studies
AbstractInclusive education is a model that seeks to meet the learning needs of all children and young people, with a special emphasis on those who are vulnerable to social exclusion and different disabilities, like people with Mucopolysaccharidosis IV-A. The objective of this study was to identify the educational needs in four case studies to develop a profile of educational needs of descriptive and cross-sectional scope, by applying an intelligence scale, a neuropsychological evaluation and interviews within the school and family context. As results from our study, an analysis by categories was obtained to guide the Individual Plans of Reasonable Adjustments from the framework of the Universal Design of Learning of inclusive education in Colombia. Knowledge concerning mucopolysaccharidosis was found to be scarce in the school institutions included in the study, although our findings suggest that it is an important input to monitor the processes of development and educational inclusion.