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Attitude of parents towards their handicapped children

Nyi, Nyi Naing, Zabidi Azhar Mohd Hussin, Nawaz Hussin, Menaga, M., Aw Linda, Raihan, S., et al.

Malaysian Journal of Child Health, 1997;9(1):88-92.
MyJurnal

A sample of 204 handicapped children below 12 years of age consisting of 121(59.3%) males and 83 (40.7%) females who were classified into various types of mental and physical handicaps, were surveyed in April and May 1996. The majority of those with mental handicaps were Down Syndrome while those with cerebral palsy were the mostfrequent cause of physical handicaps. A structured questionnaire was used for interviewing the children parents to evaluate their attitude towards their handicapped children. The majority of the parents expressed their opinions that having handicapped children was not a burden to them although these children had to be given more attention. However, a significant minority felt that the child would be afinancial burden to the family and that he/she would restrict the social life of the family. The majority of the children were sent to school, as parents felt it was their duty to do so. For those children not attending school, the majority of parents felt that the children would not benefit by going. The others could not do so because offinancial constraints or because of the distance between home and school. For these children, provid-ing hostel facilities in a boarding school could be the answer. This study shows that parental love and support plays a major role in ensuring optimal growth and development of a handicapped child

Matched MeSH terms: Down Syndrome
Fulltext Cytogenetic and clinical profile of Down syndrome in Northeast Malaysia

Azman BZ, Ankathil R, Siti Mariam I, Suhaida MA, Norhashimah M, Tarmizi AB, et al.

Singapore Med J, 2007 Jun;48(6):550-4.
PMID: 17538755

This study was designed to evaluate the karyotype pattern, clinical features and other systemic anomalies of patients with Down syndrome in Malaysia.

Matched MeSH terms: Down Syndrome/genetics*; Down Syndrome/epidemiology; Down Syndrome/pathology*
Fulltext Ocular findings in Malaysian children with Down syndrome

Liza-Sharmini AT, Azlan ZN, Zilfalil BA

Singapore Med J, 2006 Jan;47(1):14-9.
PMID: 16397715

Down syndrome was first described as Mongoloid children with European parentage. Although their facial features resemble Orientals or Asians, ocular findings have not been well-documented in Asians, especially Malaysians. Our aim was to identify the ocular findings of Malaysian children with Down syndrome.

Matched MeSH terms: Down Syndrome/ethnology*
Fulltext Down syndrome and Patau syndrome in the same sibship: random or not?

Foong Eva, Hasliani Hassan, Azizah Othman, Ilunihayati Ibrahim, Nazihah Mohd Yunus, Siti Mariam Ismail, et al.

Malaysian Journal of Paediatrics and Child Health, 2017;23(2):0-0.
MyJurnal

Objectives: Chromosomal abnormalities especially aneuploidies are the most common etiology for pregnancy loss. Trisomy 13, trisomy 18 and trisomy 21 are the most common chromosome autosomal aneuploidies with trisomy 21 (Down syndrome) being the most common chromosomal abnormality among liveborn infants. In previous reports, we noted that the recurrence of these aneuploidies in some families may not occur by chance alone.

Methods: Extraction of relevant data from review of medical case notes of a young couple with two offspring with Down syndrome (DS) and Patau syndrome.

Results: A family history of DS is a predisposing factor for both DS and other types of aneuploidy. Certain instances of non-disjunction error are not random.

Conclusion: As the maternal age was not advanced in both pregnancies, there is a possibility that the recurrent aneuploidy in this family may not be accounted by chance alone. The risk of having subsequent affected pregnancy cannot be ignored in this family and prenatal diagnosis is strongly recommended in the subsequent pregnancy.

Matched MeSH terms: Down Syndrome
Fulltext Should parental decision override best interest of a handicapped child? A case illustration in a Malaysian child with Down Syndrome

Fashiham Taib, Nur Arzuar Abdul Rahim, Mohd Rizal Mohd Zain, Mohamad Ikram Ilias, Nik Mohd Rizal Mohd Fakri, Zabidi Azhar Hussin

Education in Medicine Journal, 2015;7(1):67-71.
MyJurnal

The paper discusses on the complexity of the issues surrounding a patient with subluxation of cervical spine in a Down syndrome child. Several relevant issues are discussed including consent in a minor, conflicting decision making between parents and doctors, end-of-life issues, supporting handicapped child with minimal co-morbidities, community ethics, neglect of care by the caregiver and decision making after allowing zonal of parental discretion. Despite the difficulties surrounding parental actions, there are still ethical priorities which have to be considered individually to alleviate the suffering of the patients and the family members. Dealing with patients with chronic illnesses is a challenge for any medical doctors. The case warrants sensitive approach to allow appropriate respect for parental decision despite in disagreement with the clinical team. The term ‘zone of parental discretion’ refers to a controversial area of decision making; and has still many potential conflicts on day to day clinical cases, especially among the conservative society in the East Coast of Peninsular Malaysia.

Matched MeSH terms: Down Syndrome
Ten-year trend in prevalence and outcome of Down syndrome with congenital heart disease in a middle-income country

Zahari N, Mat Bah MN, A Razak H, Thong MK

Eur J Pediatr, 2019 Aug;178(8):1267-1274.
PMID: 31222391 DOI: 10.1007/s00431-019-03403-x

Limited data are available on the survival of patients with Down syndrome and congenital heart disease (CHD) from middle-income countries. This retrospective cohort study was performed to determine the trends in the prevalence and survival of such patients born from January 2006 to December 2015 in Malaysia. Among 754 patients with Down syndrome, 414 (55%) had CHD, and no significant trend was observed during the 10 years. Of these 414 patients, 30% had lesions that closed spontaneously, 35% underwent surgery/intervention, 9% died before surgery/intervention, and 10% were treated with comfort care. The overall mortality rate was 23%, the median age at death was 7.6 months, and no significant changes occurred over time. The early and late post-surgery/intervention mortality rates were 0.7% and 9.0%, respectively. Most deaths were of non-cardiac causes. The overall 1-, 5-, and 10-year survival rates were 85.5%, 74.6%, and 72.9%, respectively. Patients with severe lesions, persistent pulmonary hypertension of the newborn, atrioventricular septal defect, and pulmonary hypertension had low survival at 1 year of age.Conclusion: The prevalence of CHD in patients with Down syndrome is similar between Malaysia and high-income countries. The lower survival rate is attributed to limited expertise and resources which limit timely surgery. What is Known: • The survival of patients with Down syndrome with congenital heart disease (CHD) has improved in high-income countries. However, little is known about the survival of patients with Down syndrome with CHD from middle-income countries. • In the Caucasian population, atrioventricular septal defect is the most common type of CHD associated with Down syndrome. What is New: • In middle-income countries, the prevalence of CHD is the same as in high-income countries, but with a lower survival rate. • In the Asian population, ventricular septal defect is the most common type of CHD in patients with Down syndrome.

Matched MeSH terms: Down Syndrome/diagnosis; Down Syndrome/epidemiology*; Down Syndrome/therapy
Fulltext Down syndrome: multimodality imaging of associated congenital anomalies and acquired diseases

Tan AP

Med J Malaysia, 2013 Dec;68(6):482-9.
PMID: 24632922

Down syndrome (Trisomy 21) is the most common chromosomal abnormality among liveborn infants. It is the most frequent form of intellectual disability caused by a microscopically demonstrable chromosomal aberration. Management requires a multidisciplinary approach to the ongoing evaluation and monitoring for associated congenital anomalies and acquired disorders.Trisomy 21 is characterized by a variety of dysmorphic features, congenital anomalies and associated medical conditions. Knowledge of these associated conditions are important for clinicians involved in the management of these patients. Appropriate radiologic imaging with prompt, accurate interpretation plays an important role in the diagnosis and management of these diseases. The primary goal of this pictorial review is to unravel the radiological findings of these associated conditions.

Matched MeSH terms: Down Syndrome
Fulltext Audit of birth defects in 34,109 deliveries in a tertiary referral center

Noraihan MN, See MH, Raja R, Baskaran TP, Symonds EM

Med J Malaysia, 2005 Oct;60(4):460-8.
PMID: 16570708

The objective of the study is to determine the proportion and different types of birth defects among the children born in Hospital Kuala Lumpur. A cross-sectional study was conducted for a period of 18 months where all consecutively born infants, dead or alive were included. There were total of 34,109 births recorded during this period. The proportion of birth defects in Hospital Kuala Lumpur was 3.1% (n = 1056). The commonest involved were the hematology system, (157.7 per 10,000 births), the central nervous system, genitourinary system and chromosomal anomalies. The proportion was significantly higher in males and in the Chinese (p < 0.001). The commonest abnormalities are Glucose 6 Phosphate Deficiency (157.7/10000), Down's syndrome (12.6/10000), thalassaemia (8.8/10000), cleft lip and/or palate (7.6/10000) and anencephaly (7.3/10000). Neural tube defect is common and ranked second after G6PD deficiency. There is a need for a birth defect registry to assess the extent of the problem in Malaysia.

Matched MeSH terms: Down Syndrome/epidemiology
Fulltext Low levels of caries in aggressive periodontitis: A literature review

Sulugodu Ramachandra S

Saudi Dent J, 2014 Apr;26(2):47-9.
PMID: 25408595 DOI: 10.1016/j.sdentj.2013.12.002

This article is a traditional literature review on caries levels in aggressive periodontitis. Aggressive periodontitis generally affects systemically healthy individuals aged <30 years (older individuals can also be affected) and is characterized by a young age of onset, rapid rate of disease progression, and familial aggregation of cases. Dental caries is caused by the dissolution of enamel by acid-producing bacteria present in the plaque biofilm, especially when the biofilm reaches critical mass due to improper oral hygiene. The association between caries level and aggressive periodontitis has long been debated. Initial research indicated that caries levels were high in patients with aggressive periodontitis, but high-quality studies have consistently shown that caries and aggressive periodontitis are inversely related. A recent in vitro study showed that Streptococcus mutans was killed more readily in the saliva of patients with aggressive periodontitis and Aggregatibacter actinomycetemcomitans positivity than in patients with A. actinomycetemcomitans negativity. Other mechanisms possibly explaining the inverse relationship between caries and aggressive periodontitis in cases of Down's syndrome are also discussed in this literature review. The usefulness of caries level in the diagnosis of aggressive periodontitis in developing countries such as India, where the disease is diagnosed primarily on the basis of clinical and radiographic features and familial history is also discussed.

Matched MeSH terms: Down Syndrome
Predictors of parenting stress among Malaysian mothers of children with Down syndrome

Norizan A, Shamsuddin K

J Intellect Disabil Res, 2010 Nov;54(11):992-1003.
PMID: 20868445 DOI: 10.1111/j.1365-2788.2010.01324.x

Having children with intellectual disability can be stressful for most parents. Currently there are very few studies focusing on parenting stress among mothers of children with Down syndrome (DS) in Asia. The present study examined the level of parenting stress experienced by Malaysian mothers of children with DS and evaluated the child and maternal factors that contributed to parenting stress based on Hill's ABC-X Model (Hill 1949).

Matched MeSH terms: Down Syndrome/ethnology*; Down Syndrome/psychology*
Fulltext Functional transcriptome analysis of the postnatal brain of the Ts1Cje mouse model for Down syndrome reveals global disruption of interferon-related molecular networks

Ling KH, Hewitt CA, Tan KL, Cheah PS, Vidyadaran S, Lai MI, et al.

BMC Genomics, 2014;15:624.
PMID: 25052193 DOI: 10.1186/1471-2164-15-624

The Ts1Cje mouse model of Down syndrome (DS) has partial triplication of mouse chromosome 16 (MMU16), which is partially homologous to human chromosome 21. These mice develop various neuropathological features identified in DS individuals. We analysed the effect of partial triplication of the MMU16 segment on global gene expression in the cerebral cortex, cerebellum and hippocampus of Ts1Cje mice at 4 time-points: postnatal day (P)1, P15, P30 and P84.

Matched MeSH terms: Down Syndrome/genetics*
Dental care access among individuals with Down syndrome: a Malaysian scenario

Abdul Rahim FS, Mohamed AM, Marizan Nor M, Saub R

Acta Odontol Scand, 2014 Nov;72(8):999-1004.
PMID: 25029211 DOI: 10.3109/00016357.2014.936036

The purpose of this cross-sectional study was to assess the legal representatives' perceptions on dental care access of individuals with Down syndrome (DS) compared to their non-DS siblings in Peninsular Malaysia.

Matched MeSH terms: Down Syndrome/complications*
Fulltext Malocclusion and orthodontic treatment need evaluated among subjects with Down syndrome using the Dental Aesthetic Index (DAI)

Abdul Rahim FS, Mohamed AM, Nor MM, Saub R

Angle Orthod, 2014 Jul;84(4):600-6.
PMID: 24417495 DOI: 10.2319/062813-480.1

OBJECTIVE: To determine the prevalence of malocclusion and need for orthodontic treatment among persons with Down Syndrome (DS).
MATERIALS AND METHODS: Study participants were 113 persons with DS from the selected community-based rehabilitation center who fulfilled the inclusion and exclusion criteria. Ten occlusal characteristics of the Dental Aesthetic Index (DAI) were measured on study models to determine the degree of malocclusion. A single score represented the dentofacial anomalies, determined the level of severity, and determined the need for orthodontic treatment.
RESULTS: Crowding in the anterior maxillary and mandibular arch was the main malocclusion problems among the subjects with DS. Comparison between age group and genders revealed no significant differences in four categories of orthodontic treatment need (P > .05).
CONCLUSION: Most of the subjects with DS (94; 83.2%) had severe and very severe malocclusion, which indicated a desirable and mandatory need for orthodontic treatment.

Matched MeSH terms: Down Syndrome/epidemiology*
Fulltext Comparative study on attitudes and psychological problems of mothers towards their children with developmental disability

Shobana M, Saravanan C

East Asian Arch Psychiatry, 2014 Mar;24(1):16-22.
PMID: 24676483

Objective: Parents’ positive attitudes and psychological wellbeing play an important role in the development of the children with developmental disability. This study aimed to measure the prevalence of psychological problems among mothers of children with autism disorder, intellectual disability, and Down syndrome. The second aim was to assess the differences in mothers’ attitudes and psychological problems among their children with intellectual disability, autism disorder, and Down syndrome. The third aim was to identify whether negative attitude was a predictor of psychological problems in these mothers.
Methods: In this study, 112 mothers of children having mild and moderate levels of autism disorder, Down syndrome, and intellectual disability were assessed using the Parental Attitude Scale and General Health Questionnaire–28.
Results: Overall, mothers of children with intellectual disability were found to have the most negative attitude towards their child. Mothers of children with autism disorder exhibited higher scores on somatic symptoms, anxiety, and social dysfunction when compared with their counterparts with Down syndrome and intellectual disability. Negative attitude was a significant predictor of psychological problems.
Conclusion: Parental attitudes and psychological problems would vary among mothers of children with different types of developmental disability.
Key words: Autistic disorder; Down syndrome; Intellectual disability; Mothers

Matched MeSH terms: Down Syndrome/psychology
Congenital atresia and stenosis of the duodenum--a case report

Lal M, Said MY

Med J Malaysia, 1974 Jun;28(4):283-6.
PMID: 4278623
Matched MeSH terms: Down Syndrome/complications
Cytogenetic profile of patients with clinical spectrum of ambiguous genitalia, amenorrhea, and Turner phenotype: A 21-year single-center experience

Elkarhat Z, Belkady B, Charoute H, Zarouf L, Razoki L, Aboulfaraj J, et al.

Am J Med Genet A, 2019 08;179(8):1516-1524.
PMID: 31207162 DOI: 10.1002/ajmg.a.61257

The aim of the present study was to determine the frequency and nature of chromosomal abnormalities involved in patients with the clinical spectrum of ambiguous genitalia (AG), amenorrhea, and Turner phenotype, in order to compare them with those reported elsewhere. The study was conducted in the Cytogenetic Department of Pasteur Institute of Morocco, and it reports on the patients who were recruited between 1996 and 2016. Cytogenetic analysis was performed according to the standard method. Among 1,415 patients, chromosomal abnormalities were identified in 7.13% (48/673) of patients with AG, 17.39% (28/161) of patients with primary amenorrhea (PA), 4% (1/25) of patients with secondary amenorrhea, and 23.20% (129/556) of patients with Turner phenotype. However, Turner syndrome was diagnosed in 0.89% (6/673) of patients with AG, 10.56% (17/161) of patients with PA, and 19.78% (110/556) of patients with Turner phenotype. In addition, Klinefelter syndrome and mixed gonadal dysgenesis were confirmed in 2.97% and 1.93% of patients, respectively, with AG, while, chimerism, trisomy 8, and trisomy 13 were confirmed only in 0.15% each. Trisomy 21 was confirmed in patients with AG and Turner phenotype (0.15% and 0.36%, respectively). Moreover, 5.60% (9/161) of patients with PA have been diagnosed as having sex reversal. Thus, the frequency of chromosomal abnormalities observed in Moroccan patients with PA is comparable to that reported in Tunisia, Turkey, Iran, and Hong Kong. However, the frequency is significantly less than that identified in India, Malaysia, Italy, and Romania.

Matched MeSH terms: Down Syndrome/genetics; Down Syndrome/epidemiology; Down Syndrome/pathology
Kasabach-Merritt syndrome and Down's syndrome

Ram SP

J R Soc Med, 1997 Mar;90(3):159-60.
PMID: 9135617
Matched MeSH terms: Down Syndrome*
Prenatal detection of birth defects in a Malaysian population: estimation of the influence of termination of pregnancy on birth prevalence in a developing country

Ho JJ, Thong MK, Nurani NK

Aust N Z J Obstet Gynaecol, 2006 Feb;46(1):55-7.
PMID: 16441696

We studied 253 women with a pregnancy complicated by a birth defect and 506 controls to determine the frequency and type of prenatal tests and the types of defects detected antenatally. Most women had at least one ultrasound examination, but the frequency of other screening tests was low. Only 38 (15%) of defects were detected antenatally (37 by ultrasound). Birth prevalence is unlikely to be affected by pregnancy termination.

Matched MeSH terms: Down Syndrome/diagnosis; Down Syndrome/epidemiology
Fulltext Knowledge and perception regarding prenatal genetic screening of thalassemia, down syndrome and neural tube defects: a study among IIUM Kuantan undergraduates

Nur Sajidah Sulaiman, Norafiza Zainuddin

Malaysian Journal of Public Health Medicine, 2018;18(1):0-0.
MyJurnal

Prenatal genetic screening is offered during pregnancy to detect foetuses that have certain diseases. It is widely used in the detection of congenital malformation which results in foetal birth defects. Unawareness of the society on the importance of prenatal genetic testing contributes to the increase in the birth defect rate.Future parents should be exposed with the importance in performing prenatal genetic screening.The purpose of this study was to examine the knowledge and perception level of International Islamic University Malaysia (IIUM) Kuantan students regarding prenatal genetic screening thalassemia, Down syndrome and neural tube defects.This is a cross-sectional study whereby192 respondents were selected using convenience sampling method. A set of close-ended questionnaire was distributed among students in IIUM Kuantan. Independent t-test, parametric test (One- Way ANOVA test), non-parametric test (Mann-Whitney test) and correlation coefficient(Pearson) were used to find all related factors influencing knowledge and perception and to find association between knowledge and perception of IIUM Kuantan students.From this study, it was found that the level of knowledge and perception of IIUM Kuantan students regarding prenatal genetic screening of thalassemia, Down syndrome and neural tube defects was relatively high. Married students hada betterknowledge compared to unmarriedstudents (p=0.008). Moreover, students from Kulliyyah (Faculty) of Medicine had adequate level of knowledge (p

Matched MeSH terms: Down Syndrome
Fulltext The challenges of nurturing autistic children from the mother’s perspective. [Cabaran membesarkan anak-anak autisme daripada perspektif ibu]

Siti Marziah Z, Nor Shahirah Mat T

Jurnal Psikologi Malaysia, 2018;32(1):58-71.

The prevalence of Autism Spectrum Disorder (ASD) cases has been increasing worldwide. There are countless aspects of challenges faced by parents to bring up children with ASD. Parents of children with ASD are often reported to have higher stress in parenting compared to parents with normal children or children with other disabilities such as Down syndrome. Therefore, this study explored the challenges faced by mothers of children with ASD. Mothers whom were selected are the primary guardians and spend a lot of time nurturing these children. This qualitative study involved in-depth interviews with five (5) informants in Selangor. The thematic analysis identified the challenges faced by the mothers of children with ASD, which are the aspects of behavioral, financial and community acceptance. The findings showed that mothers to children with ASD encountered numerous complicated challenges which require the support of all parties to address those challenges. High support and compassionate understanding are really needed from the spouse, normal children, local communities, and government to alleviate their difficulties. Thus, the findings of this study hopefully will help various parties to understand the challenges faced by the mothers of children with ASD. It can also be the guiding principle in designing supportive programs and interventions for children with ASD as well as their parents.

Matched MeSH terms: Down Syndrome

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