Parents' of Child with Down's Syndrome: Their Care-giving Experiences, Parent - Child Communicative Pattern at Home and Perceived Quality of Life: A Pilot Study

Background: children with Down's syndrome are frequently associated with physical problems such as congenital anomalies, a higher mortality rate caused by infections, a high risk of developing malignancies, visual and auditory impairment and disruptive behaviour disorders, and autism. They form the largest group of persons with intellectual disability commonly challenged by language impairment. At the national level, the latest available annual reports (for the year 2004 to 2006) from the Malaysia Ministry of Health (Information and Documentation System Unit) shows that around 600 new cases are reported year, a relatively common cause of disabilities for children (0-12 years age range). Objectives: to explore experiences of Malaysian parents with Down's syndrome child related to care giving, their communicative patterns quality of life. Methodology: This is a pilot study using cross-sectional, qualitative and quantitative methodological approach. Data collection was conducted with prior ethical approval and consent from two participants who were parents with Down's syndrome child of the Malay ethnic background, from the community –based rehabilitation (CBR) center. Prior appointment was made for in-depth interviews and participant observations at their individual homes. Participant-generated Index (PGI) of quality of life Instrument was also administered during the second visit to the home. Findings: identified main themes such as burden of care physically and emotionally; support socially, financially and from family; levels of understanding related to the future, resources for information and child's condition; developmental stimulation, emotional responses initially, acceptance; varying ways of communicative pattern with child; PGI of Quality of life which showed participants' QOL at the poorer end. Conclusion: further study of more participants' care giving experiences will yield better understanding of Malaysian parents with DS child. The pilot study indicated that rich data can be obtained. However, there was a need to improve on the interviewer questioning technique and duration of observation in the main study

Quality of life and experience of mothers with Down syndrome children

Mothering a child with Down syndrome (DS) could be stressful and emotionally overwhelming for some families. Children who are born with this condition are often associated with a variety of developmental delays and various congenital anomalies which require care in the hospital soon after delivery and subsequent medical follow-up. In Malaysia, the Ministry of Health reported an annual figure of more than 600 new cases of children with DS which constitutes almost a quarter of the total number of the children (below 12 years old) with newly reported disabilities (Malaysia, Ministry of Health (n.d.). Previous studies have highlighted the need to examine the multi-dimensional, holistic concept of quality of life (QoL) to determine the well-being and needs of mothers of child with disability (WHOQOL Group, 1996). There are little published studies related to experiences of mothers in Malaysia, particularly in the Borneo state of Sarawak. The purpose of the recent study was to understand the experiences of mothers having a child with DS and their perceived QOL in the local context. It also aimed to examine the relationship between mothers’ selected background variables and their perceived QOL

Care-giving children having Down syndrome - life impacts and psycho-social experiences of mothers

This paper highlights the life impacts and psycho-social experiences of mothers care giving their children having Down syndrome in the Malaysian state of Sarawak. Methods: In-depth interviews were conducted with 26 participants who were accessed from selected health clinics, schools and community–based rehabilitation centres using a purposive sampling procedure. Findings: Bringing up children having Down syndrome had impacted upon mothers to some extent in term of their family functioning, increased competence in childcare and motivation to reach out to others. Psychosocially, mothers experienced a range of difficult emotions, feeling unsupported, worries and concerns, including their concern about recurrence Down syndrome. Integral to their experience was the excitement and joy with child’s progress. Conclusion: Insights as gained from the main findings indicate that care-giving children having Down syndrome did have some life impacts upon mothers. However, their experiences are not all negative though some of their psychosocial-related experiences are of concern. It augurs well for nurses as care professionals to be needs-sensitive and to provide timely supportive nursing care to facilitate the mental well-being of mothers and an environment helpful for the optimal development of their children

Paediatric Nursing Skills Made Easy

In our attempt to compile a book on essential procedures related to paediatric nursing, our goal is to provide a text that would be useful as a reference and guidelines with nursing students or even practicing paediatric nurses in mind. While there are other text books related to step-by-step nursing procedures, this particular publication addresses variations specifically on the care of hospitalized child common within the local context. This text with its focus on care provision to meet the unique needs of the hospitalized child would complement the other recommended nursing textbooks. At the beginning of each nursing procedure, we emphasize on importance of identification for the correct child, hand hygiene, consent and giving of clear information to the child as developmentally appropriate. The practice of family-centered care is integrated to encourage parental participation in meeting the needs of their hospitalized child. The introductory Chapter One outlines important General Principles related to correct patient identification, consent, hand hygiene, privacy and documentation which should be considered and applied when carrying out any nursing procedures on hospitalized children. Chapters Two to Twelve are procedural chapters. Each chapter contains of procedures with details on step-by-step procedural implementations as well as the explanations to rationalize each step. The requirements listed for each procedure summarizes the equipment and materials that should be gathered in readiness before starting the procedures. Key points of procedures to be alerted are also included. We are certain that information which is written in simple English as contained in this book would help to students’ understanding and learning. Thus, we have great hope it would contribute towards improving nursing students’ confidence in their delivery of care

Electronic Health Documentation using Integrated Nursing Education System: Nursing Students’ Experience, Perceptions, Attitudes and Intention to Use

Electronic health record (EHR) systems have been implemented in healthcare organizations in different countries including selected Malaysian hospitals in the last decade. Health professionals including nurses navigate EHR system in relation to patient history, nursing assessment and interventions, progress notes, vital signs, intakes-outputs, incident reports, physicians’ orders and so forth. Preparation of nursing students as the future professional nurses who would accept and utilize the EHR system proficiently for a safe delivery of healthcare practice is imperative. Through a cross-institutional memorandum of academic understanding in year 2015, the web application Integrated Nursing Education System (iNES), a simulated electronic health documentation, web-based application (at https://www.ines.sg) from the National University of Singapore (Kowitlawakul, 2014) has been made accessible to students in the Department of Nursing, Faculty of Medicine and Health Sciences (FMHS) of UNIMAS for teaching-learning purpose. This study aims to examine nursing students’ experience with the newly introduced technology and the extent of new learning that they may have gained. Students’ perceptions, attitudes, intention to use iNES and factors influencing their intention to use iNES for simulated EHR was also identified

Critical Exponents for Three-Dimensional Superfluid--Bose-Glass Phase Transition

The critical phenomenon of the zero temperature superfluid--Bose-glass phase transition for hard-core bosons on a three-dimensional disordered lattice is studied using a quantum real-space renormalization-group method. The correlation-length exponent $\nu$ and the dynamic exponent z are computed. The critical exponent z is found to be 2.5 for compressible states and 1.3 for incompressible states. The exponent $\nu$ is shown to be insensitive to z as that in the two-dimensional case, and has value roughly equal to 1.Comment: 11 pages, REVTE

Schwinger type processes via branes and their gravity duals

We consider Schwinger type processes involving the creation of the charge and monopole pairs in the external fields and propose interpretation of these processes via corresponding brane configurations in Type IIB string theory. We suggest simple description of some new interesting nonperturbative processes like monopole/dyon transitions in the electric field and W-boson decay in the magnetic field using the brane language. Nonperturbative pair production in the strong coupling regime using the AdS/CFT correspondence is studied. The treatment of the similar processes in the noncommutative theories when noncommutativity is traded for the background fields is presented and the possible role of the critical magnetic field which is S-dual to the critical electric field is discussed.Comment: 29pp, LaTeX; v3. reference adde

Collaborative creativity among undergraduate students as game creators during gamification in a university-wide elective course

Collaborative creativity is an essential skill for unleashing university students’ skills in team building during complex problem-solving. The aim of this descriptive quantitative research was to examine undergraduate students’ perspectives regarding their collaborative creativity experience as game creators for a gamification group assignment within a university-wide elective course on learning disabilities. The Assessment Scale of Creative Collaboration (ASCC) questionnaire was completed by 14 students. The results provide insightful perspectives by undergraduate students regarding their experience in collaborative creativity during game creation. The findings from the closed-ended questions of the ASCC demonstrate that most of the students valued the diversity of knowledge and skills of their team members, shared different ideas, adapted their ideas and practices according to the project difficulties, trusted their team members, co-constructed the game together, overcame conflicts in positive ways, developed multiple versions of their game, and coordinated well for their team project. Data from the open-ended questions of the ASCC, which provided detailed but nuanced perspectives of the students, were analysed thematically. Three main themes were identified: the positive aspects of gamification, the constraints related to the gamification project, and teamwork and collaborative problem-solving approaches. This study provides evidence on the feasibility of game creation that is embedded within gamification group projects for fostering collaborative creativity among undergraduate students. Gamification has the potential in supporting the acquisition of 21st century learning and innovation skills in higher education. Implications of the application of gamification in higher education are discussed

Disordered Boson Systems: A Perturbative Study

A hard-core disordered boson system is mapped onto a quantum spin 1/2 XY-model with transverse random fields. It is then generalized to a system of spins with an arbitrary magnitude S and studied through a 1/S expansion. The first order 1/S expansion corresponds to a spin-wave theory. The effect of weak disorder is studied perturbatively within such a first order 1/S scheme. We compute the reduction of the speed of sound and the life time of the Bloch phonons in the regime of weak disorder. Generalizations of the present study to the strong disordered regime are discussed.Comment: 27 pages, revte

Dark energy survey year 3 results: Galaxy sample for BAO measurement

Rosell, A., et al. (DES Collaboration)In this paper, we present and validate the galaxy sample used for the analysis of the baryon acoustic oscillation (BAO) signal in the Dark Energy Survey (DES) Y3 data. The definition is based on a colour and redshift-dependent magnitude cut optimized to select galaxies at redshifts higher than 0.5, while ensuring a high-quality determination. The sample covers ~4100 deg2 to a depth of i = 22.3 (AB) at 10s. It contains 7031 993 galaxies in the redshift range from z = 0.6 to 1.1, with a mean effective redshift of 0.835. Redshifts are estimated with the machine learning algorithm DNF, and are validated using the VIPERS PDR2 sample. We find a mean redshift bias of zbias~0.01 and a mean uncertainty, in units of 1 + z, of σ68~0.03. We evaluate the galaxy population of the sample, showing it is mostly built upon Elliptical to Sbc types. Furthermore, we find a low level of stellar contamination of ≤ 4 per cent. We present the method used to mitigate the effect of spurious clustering coming from observing conditions and other large-scale systematics.We apply it to the BAO sample and calculate weights that are used to get a robust estimate of the galaxy clustering signal. This paper is one of a series dedicated to the analysis of the BAO signal in DES Y3. In the companion papers, we present the galaxy mock catalogues used to calibrate the analysis and the angular diameter distance constraints obtained through the fitting to the BAO scale.The DES data management system is supported by the National Science Foundation under Grant Numbers AST-1138766 and AST-1536171. The DES participants from Spanish institutions are partially supported by MICINN under grants ESP2017-89838,PGC2018-094773, PGC2018-102021, SEV-2016-0588, SEV-2016-0597, and MDM-2015-0509, some of which include ERDF funds from the European Union. IFAE is partially funded by the CERCA program of the Generalitat de Catalunya. Research leading to these results has received funding from the European Research Council under the European Union’s Seventh Framework Program (FP7/2007-2013) including ERC grant agreements 240672, 291329, and 306478. We acknowledge support from the Brazilian Instituto Nacional de Ciência e Tecnologia (INCT) do e-Universo (CNPq grant 465376/2014-2). ACR acknowledges financial support from the Spanish Ministry of Science, Innovation and Universities (MICIU) under grant AYA2017-84061-P, co-financed by FEDER (European Regional Development Funds) and by the Spanish Space Research Program ‘Participation in the NISP instrument and preparation for the science of EUCLID’ (ESP2017-84272-C2-1-R). SA was supported by the MICUES project, funded by the EU’s H2020 MSCA grant agreement no. 713366 (InterTalentum UAM)