Evaluating health visitors’ existing knowledge of Down syndrome and the effect of a training workshop

© 2018 The Authors. Journal of Policy and Practice in Intellectual Disabilities published by International Association for the Scientific Study of Intellectual and Developmental Disabilities and Wiley Periodicals, Inc.Children with Down syndrome are at an increased risk of health and development issues in early childhood, therefore monitoring their development and identifying health conditions as early as possible is critical. Health professionals may not always have the training and knowledge to effectively support families of children with disabilities, including Down syndrome. In the UK, health visitors conduct health and development reviews for children under 5 years, therefore they have a key role to play in monitoring and identifying health issues in young children with Down syndrome. However there has been no research on health visitors' knowledge and training needs regarding Down syndrome. This study aimed to assess health visitors' existing knowledge of Down syndrome and evaluate a pilot Down syndrome training session for health visitors. Twenty-six health visitors from two NHS Trusts in England participated in 1 of 5 group training workshops. Pretraining and posttraining questionnaires assessed knowledge about Down syndrome, and feedback on the training session. Knowledge about Down syndrome was low prior to the training and increased significantly following the training session. Health visitors rated the training workshop very highly and would recommend it to a colleague. Health visitors identified a need for training to enable them to increase their knowledge about Down syndrome and better support families. In summary, a pilot training session about Down syndrome received positive feedback from health visitors, and led to improvements in knowledge and understanding about Down syndrome. This has the potential to improve health outcomes for children with Down syndrome.Peer reviewe

Cara Pembelajaran Anak Down Syndrome di Kelas B1 Tk Luar Biasa C Dharma Asih

This research aimed to describe how learning Down syndrome children in the kindergarten class B1 Exceptional C Dharma Asih Pontianak. The method used is descriptive method with qualitative approach. The data source consists of 1 teacher , 2 children in class B1 and two parents of children subject of research. Results of the study illustrates how studying Down syndrome children performed individually tailored to the skill level and development of children. How to teachers in teaching children with Down syndrome by providing direct assignment and invite children to imitate speech teacher. The task given the form of writing letters and numbers of activities are still in the form of dots, coloring, mosaics, and sing along. The role of parents in giving lessons to children with Down syndrome can be done by paying attention and affection to the children and continue the learning process provided by the teacher at home. Learning can be known by the parents through good cooperation between teachers and parents

HUBUNGAN FUNGSITIROID DENGAN GANGGUAN PENDENGARAN PADA ANAK SINDROM DOWN

Background: Children with Down syndrome have increased risk of health problems. Two common health problems in children with Down syndrome are thyroid dysfunction and hearing disorder. These health problems could inhibit the growth and development of children with Down syndrome. Aim: To find out the correlation of thyroid function and hearing disorder in children with Down syndrome. Methods: This retrospective observational study was done by taking data from medical records of Down syndrome patients in RSUP dr. Kariadi, Semarang. The subjects is Down syndrome children who underwent medical checkup in RSUP dr. Kariadi, Semarang. Data are subject’s characteristic, thyroid test result, and hearing test result for both ears by tympanometri, OAE and, BERA. Chi-square test and Spearman test were used for statistical analysis. Result: 32 subjects met the inclusion criteria in this study. 62.5% of them had hypothyroidism. 21 children had hearing loss with two children suffered a unilateral hearing loss so that there are 40 ears (62,5%) had hearing loss by 35% suffered from type CHL and 65% suffered from type SNHL. The Spearman test showed a weak degree correlation between thyroid function and hearing disorder (r = 0.267; p = 0.033). The Chi-square test showed an association between thyroid function with type of hearing disorder (p = 0.007). Conclusion: There is a weak degree correlation between thyroid function and hearing disorder in children with Down syndrome. Keywords: Down syndrome, thyroid, Hearing, CHL, SNH

Parents’ experiences of health visiting for children with Down syndrome

© MA Healthcare Limited.Children with Down syndrome have an increased likelihoodof experiencing serious health conditions. Health visitors canhave an important role in monitoring and promoting healthand development for young children with Down syndrome.This study aimed to explore parents’ experiences of healthvisiting services for children with Down syndrome. Twentyfour parents of children with Down syndrome aged 0–5 yearscompleted a brief questionnaire about the number and natureof visits from health visitors in the previous 12 months andtheir support needs. Some parents commented that otherprofessionals met the needs of their child, whereas others saidthat they would like more advice and support from healthvisitors. A further exploration of broader health serviceprovision, including health visiting, for young children withDown syndrome is needed.Peer reviewedFinal Accepted Versio

The triple challenges associated with age-related comorbidities in Down syndrome

Background Major increases in the survival of people with Down syndrome during the last two generations have resulted in extended periods of adulthood requiring specialist care, which in turn necessitates greater understanding of the nature, timing and impact of comorbidities associated with the disorder. Method The prevalence of five comorbidities reported as common in adults with Down syndrome, visual impairment, hearing impairment, epilepsy, thyroid disorders and dementia was assessed by decade of life. Results From early adulthood, people with Down syndrome are at enhanced risk of developing new comorbidities and they may present with multiple conditions. Three specific challenges are identified and discussed: are comorbidities detected in a timely manner, is the clinical progress of the disorder adequately understood, and who is responsible for the provision of care? Conclusions Further detailed investigations into the development and treatment of comorbidities across the lifespan are needed for a successful longitudinal approach to healthcare in people with Down syndrome. Implementation of this approach will better inform healthcare providers to ensure continuity of care with advancing age

Total Energy Expenditure and Body Composition of Children with Developmental Disabilities

Background Obesity prevalence is increased in children with developmental disabilities, specifically in children with spina bifida and Down syndrome. Energy expenditure, a critical aspect of weight management, has been extensively studied in the typically developing population, but not adequately studied in children with developmental disabilities. Objective Determine energy expenditure, fat-free mass and body fat percentile and the impact of these findings on recommended caloric intake in children with spina bifida and Down syndrome. Methods/Measures This pilot study included 36 children, 18 with spina bifida, 9 with Down syndrome and 9 typically developing children. Half of the children with spina bifida were non-ambulatory. Doubly labeled water was used to measure energy expenditure and body composition. Descriptive statistics described the sample and MANOVA and ANOVA methods were used to evaluate differences between groups. Results Energy expenditure was significantly less for children with spina bifida who primarily used a wheelchair (p = .001) and children with Down syndrome (p = .041) when compared to children without a disability when adjusted for fat-free mass. However, no significant difference was detected in children with spina bifida who ambulated without assistance (p = .072). Conclusions Children with spina bifida and Down syndrome have a significantly decreased energy expenditure which directly impacts recommended caloric intake. No significant difference was detected for children with spina bifida who ambulated, although the small sample size of this pilot study may have limited these findings. Validating these results in a larger study is integral to supporting successful weight management of these children

Male Partners' Involvement Towards Prenatal Screening and Diagnostic Testing for Down Syndrome

Introduction: Now, male partners' involvement in prenatal screening and diagnostic testing for Down syndrome is becoming increasingly recognized as well to ensure that parents are well informed of the risks and benefits of screening. The aim of study was to understand the degree of male partners' involvement during pregnancy in Singapore population. Methods: A cross-sectional survey of male partners' attending prenatal counseling was performed. The instrument used to measure the level of involvement is a self-assessment questionnaire that identifies the role of male partners with a Likert scale. Descriptive statistics was used to analyze data gained. Result: A total of 107 participants completed the questionnaire. Sixty-seven percent of male partners were found to have a highlevel of involvement while 32.7% was found to have a medium level of involvement. Most of them stated that women can pursue prenatal testing without their permission. Male partners found it more important for them to accompany their spouse to amniocentesis or CVS than to the Down syndrome screening test. When participants were asked about how much information about Down syndrome they sought prior to the appointment, how much discussion they had with their spouse about Down syndrome testing, and about whether they or their spouse should be the first person to receive test results, most stated that they were undecided. Conclusion: These results revealed that male partners were very well involved in the Down syndrome testing during pregnancy and future studies should assess possible underlying factors that influence male partners' involvement

Changing Student Teachers' Attitudes Towards Disability and Inclusion

A total of 274 preservice teacher education students were surveyed at the beginning and end of a one-semester unit on Human Development and Education which combined formal instruction with structured fieldwork experiences. The latter included interviewing community members regarding their knowledge of Down syndrome and opinions on inclusive education, and writing an associated report. At the end of semester, not only had student teachers acquired more accurate knowledge of Down syndrome, together with more positive attitudes towards the inclusive education of children with Down syndrome, but their attitudes towards disability in general had also changed, and they reported greater ease when interacting with people with disabilities. The study illustrated the value of combining information-based instruction with structured fieldwork experiences in changing attitudes towards disability and inclusion. It also demonstrated that raising awareness of one disability may lead to changes in attitudes towards disability in general

Down syndrome-recent progress and future prospects

Down syndrome (DS) is caused by trisomy of chromosome 21 (Hsa21) and is associated with a number of deleterious phenotypes, including learning disability, heart defects, early-onset Alzheimer's disease and childhood leukaemia. Individuals with DS are affected by these phenotypes to a variable extent; understanding the cause of this variation is a key challenge. Here, we review recent research progress in DS, both in patients and relevant animal models. In particular, we highlight exciting advances in therapy to improve cognitive function in people with DS and the significant developments in understanding the gene content of Hsa21. Moreover, we discuss future research directions in light of new technologies. In particular, the use of chromosome engineering to generate new trisomic mouse models and large-scale studies of genotype-phenotype relationships in patients are likely to significantly contribute to the future understanding of DS