Parents Of Down Syndrome Children Research Articles

Down Syndrome Gender Differences in Production First and Foreign Language

Many researchers have identified that most Down Syndrome children have language delays. Also, many studies have clarified the inherent difference between normal and Down syndrome children to specify the reasons behind the delay. The current study tries to answer the question is there a difference between female and male children with Down syndrome? Are females or males better at the production of a first and a foreign language? It is hypothesized that there are no differences between the two genders in the production of the first and foreign languages. The study is followed the descriptive method and it is used the questionnaire as a tool to collect the data. The questionnaire was answered by 78 parents of Down syndrome children. The results have been analyzed and it has shown that there are differences between females and males for the female in production of the first as well as the foreign language in all the ages. This results due to damage of the left hemisphere of the brain therefore the females with this Syndrome are better at producing the language than the males because the right hemisphere would take the production role instead of damaging one.

The Relationship between Forgiveness and Resilience in Parents of Down Syndrome Children

The aim of this study was to examine the relationship between Forgiveness and resilience in mothers who have children with Down syndrome. This research is important given the emotional and psychological challenges that mothers often face in this situation. The condition of Down syndrome in children can cause significant psychological stress in the mother, where Forgiveness and resilience are key factors in overcoming these challenges. The research was conducted on 100 mothers who have children with Down syndrome, using a purposive sampling method. Data were collected through questionnaires, using the Forgiveness scale from McCullough and the resilience scale from Reivich and Shatte. The research results show that the empirical average (mean) value for Forgiveness is 73.33 and for resilience is 169.15, indicating that these two variables are in the high category. With a correlation coefficient (r) of 0.459 and a significance level of 0.000 (p<0.01), these results indicate a very significant positive relationship between Forgiveness and resilience. This means that the higher the level of Forgiveness in the mother, the higher the level of resilience. These findings have important implications for the development of support and intervention programs for mothers of children with Down syndrome, emphasizing the importance of emotional and psychological aspects in child care. This research also opens up opportunities for further study regarding other factors that influence maternal emotional well-being in this context.

Structural Relationship between Family Functioning and Parental Health-Related Quality of Life among Parents with Down Syndrome Children in Kelantan, Malaysia

Caregiving and living with a Down Syndrome (DS) child is distressing and has given a negative impact on the quality of life of parents. The study aims examine the parents with DS children on the health-related quality of life (HRQoL) and family functioning and to identify potential factors affecting them. The cross-sectional study involved 94 parents with DS children from the Paediatric Clinic, Hospital Raja Perempuan Zainab II, Kota Bharu, Malaysia, with a mean age of 46.7 ± 7.0 years. Demographic and socioeconomic data of the parents and DS children were collected, and their quality of life (QoL) was measured based on the self-reported Pediatric Quality of Life Inventory Family Impact Module (PedsQL FIM). Parents of DS children in the current study have shown good HRQoL and family functioning, with scores of 83.2 and 89.3 out of 100, respectively. The family functioning score shown significantly correlated with the parental health-related quality of life (p<0.001). The number of family members was found to have a statistically significant effect on family functioning (p=0.015). The lowest score in the HRQoL was in the domain of ‘worry’. The findings of the current study verify previous reports of relatively good quality of life and family functioning in families with DS children and also with other disabilities.

Parents’ Perspective of Sexuality among Down Syndrome Children

Introduction: Sexuality matters are always neglected, and are viewed as a taboo subject that is not discussed openly in Malaysia. Hence, sexuality issues among people with disabilities remain shrouded in prejudice and myths. Individual with Down syndrome have the same sexual experiences and needs as other typically developed children. The deficiency on cognitive ability among Down syndrome children is a major challenge for them to understand the concept of sexuality. The purpose of this preliminary qualitative study was to explore the perspectives on the topic of sexuality among Down syndrome children. Methods: The purposive sampling method was used to recruit respondents, based on the following criteria: i) Parents (father or mother) who have Down syndrome children aged from 8-17 years, and ii) able to communicate in the Malay or English language. A total of five respondents were included in this study. The respondents were the parents of Down syndrome children who were receiving occupational therapy interventions at three community-based rehabilitation centres in Kuala Selangor. The data were collected using semi-structured interviews, which were recorded using an audio recorder. The data were then transcribed and analysed using the Interpretative Phenomenological Analysis (IPA). Results: The study revealed the perspective of parents on sexuality issues among Down syndrome children in relation to readiness, puberty, sexual desires, cultural norms and vulnerable groups. Conclusion: Findings of this study could use as a baseline in developing a module to assist parents in managing their concerns.

Parent-child relations in families that bring up down syndrome children

Down syndrome children need special attention. As long as the illness is often accompanied by mental disorders, there should be an individual approach to child in upbringing and education. This compels parents to adjust their rhythm of life in accordance with child's needs. Difficulties in raising a child with special needs can lead to a deterioration in the attitude of parents towards the child. This comes out in the behavior of parents and leaves an imprint on the psychological state of the child, his character and subsequent life. Materials and methods: 97 Down syndrome children were examined. All patients met the inclusion criteria. The patients' parents gave informed consent to the participation in the study. Down syndrome in children has been genetically verified. Patients were divided into two groups according to the criterion of ability to verbal communication: group 1 (G1) included 77 children capable of verbal communication, group 2 (G2) – 20 children who did not speak. Individualization in the most of both groups respondents was at an average level, which indicated sufficient parents’ acceptance of the individual characteristics of the child, sufficient attention to his interests, satisfaction with the time spent together. Cooperation did not show statistically significant differences in G1 and G2. The average score on this indicator did not differ in both groups (6.87±1.13 for G1, 6.75±1.10 for G2). Statistically significant difference between G1 and G2 was found in symbiosis (4.25±1.43 points against 5.10±1.55 points, respectively). Authoritarianism in G1 was 3.27±1.26 points, in G2 – 4.05±1.60 points, which corresponds to the average level of severity and means achieving a balance between giving the child freedom of action and the establishment of restrictions. Disability in G1 and G2 was 2.43±1.40 and 2.90±1.77, respectively, which corresponds to a low level of its severity: parents of Down syndrome children are generally not inclined to increase the defects of their children, regardless of their language skills.

Music, Dance and Song About Tooth Brushing in The Improvement of Knowledge, Teaching Practices and Dental Cleaning Status Mouth in Children Down Syndrom in SLB Kota Tasikmalaya

Music, dance and tooth brushing songs (MUTALAGI) given to children with Down syndrome is a modified dental and oral health education effort that aims to increase knowledge, practice brushing and dental and oral hygiene status. Dental health education using music, dance and songs can provide a deeper message and provide a better learning experience for children with Down syndrome. This study uses a mixed method design with a Sequential Exploratory strategy where researchers use two stages, namely qualitative research to conduct group interviews focused on parents of down syndrome children as the basis for making instruments. Media made by researchers was assessed by 12 experts consists of two music and dance experts, two media experts, two dental health education experts, two child dental health experts and two experts with special needs children. Quantitative research was conducted to test the media for 26 down syndrome children using the one group pretest and posttest approach and tested statistically using the Wilcoxon test, Marginal Homogeneity test and Binomial test.The results showed that music, dance and tooth brushing songs for Down Syndromic children were suitable for use in dental health education, and the results of statistical analysis showed a significant increase in knowledge scores, teeth brushing practices and oral and dental hygiene status before and after treatment, i.e. p 0.001.

The effect of using dental and oral health book on the knowledge and skills of parents with Down Syndrome children

Introduction: Down syndrome is a genetic disorder experienced by individuals due to an excess of one chromosome in the body cells as the 21st chromosome. This trisomy 21 will result in changes in physical characteristics thus affecting the dental and oral health problems of the patient. This study was a quasi-experimental study aimed to determine the effect of using the dental and oral health book on the knowledge and skills of parents with Down Syndrome children in carrying out the children’s dental and oral health care. Methods: The study design was one group pre-post test with an intervention in the form of reading a book. The sample was 36 parents of Down Syndrome children who were members of the POTADS (Persatuan Orang Tua Anak dengan Down Syndrome/Association of Parents with Down Syndrome Children) in Bandung. The statistical test used was the Wilcoxon Signed Rank Test. Result: The results showed that parents' knowledge of their Down Syndrome children’s dental and oral health care and conditions were increased after reading educational books (from (4.44 ± 1.362) and (7.47 ± 2,274) respectively, into (6.69 ± 0.856) and (9.00 ± 1,394) respectively; p < 0.05). The skills of parents on performing Down Syndrome children’s dental and oral health care were also increased, from (5.00 ± 2.014) into (8.03 ± 1.134); p < 0.05. Conclusion: The book of Down Syndrome children’s dental and oral health increased parental knowledge regarding the dental and oral health care and condition of Down Syndrome children. The book also improved the parental skills in carrying out the Down Syndrome children’s dental and oral health care.Keywords: Parental skills, book, parental knowledge, Down Syndrome, Trisomy 21.

KNOWLEDGE, ATTITUDES, AND BEHAVIOR OF PARENTS TO THE METHOD OF UPBRINGING CHILDREN WHO HAVE DOWN SYNDROME IN SLB-C TUNAS HARAPAN KARAWANG

Down syndrome is a genetic disorder characterized by an excess of third chromosome in the 21st pair of chromosomes that causes the number of chromosomes to be 47. The method of parenting is a way of caring, nurturing and educating, therefore parents should have knowledge, attitude and good method of behavior parenting. The highest prevalence of Down syndrome is in West Java, which is around 50.90%. The aim of the research is to recognize the level of knowledge, attitudes, and behavior of parents to the method of upbringing children who have Down syndrome in SLB-C Tunas Harapan Karawang. The research method used in this research is descriptive, cross sectional design with research instrument in the form of questionnaire containing 30 questions. Research subjects were all parents of Down syndrome children in SLB-C Tunas Harapan Karawang with 52 respondents. The result of the research is 90,4% of respondents have good knowledge, 98,2% of respondents have good attitude, and 96,1% of respondents have good behavior. The conclusion of this research is the level of knowledge, attitude, and behavior of parents who have Down syndrome children in SLB-C Tunas Harapan Karawang generally is good.     Keywords: down syndrome, parents, upbringing

Stress Levels and Coping Strategies among Parents of Children with Autism and Down Syndrome: The Effect of Demographic Variables on Levels of Stress

ABSTRACTThis study evaluated levels of stress among parents of children who are diagnosed with autism and Down syndrome in Jordan, identified the coping strategies used by parents, and compared their stress levels with those of parents of typically developed children. Parents in centers of special needs and mainstream schools in Amman, Zarqa, and Irbid returned 117 questionnaires. The questionnaires used the Parenting Stress Index – Short Form (PSI–SF) and the Brief COPE, the two most widely-used inventories in the literature. The results showed differences between the three groups as parents of autistic children showed the highest level of stress, and the parents of Down syndrome children showed the lowest. The differences in levels of stress were not significant between parents of children with Down syndrome and those with typically developed children. Parents of the three groups mostly used religion in order to cope. This study did not reveal any relationship between demographical data and total level of stress among parents.

Parenting Styles, Coping Strategies and Life Satisfaction of Parents Having Children with Down Syndrome


 
 
 The present study explores the relationship among Parenting styles, Coping Strategies and Life Satisfaction of parents having children with Down syndrome. Purposive sampling and comparative study were used to select the sample. A sample consisted of (N=100) parents mothers and fathers of Down syndrome children were taken from different government and private institutes of Faisalabad. The sample was further divided into (n=50) mothers and (n=50) fathers of Down syndrome children. The age range of participants was taken 30-55 years above. Parenting Styles Dimension Questionnaire (PSDQ) translated Urdu version by (Batool, 2013). Coping Response Inventory (CRI) translated Urdu version by (Mahmood & Sheraz, 2012) and Life satisfaction scale (LSS) Urdu version translated by (Mahmood, 2013) were used for data collection. Pearson Product Moment Correlation Coefficient and Independent Sample T-Test were calculated for statistical analysis. Findings indicates that male parents of Down syndrome children scored high on Authoritative and permissive parenting styles and it’s also showed that male parents of Down syndrome children have scored high on the scale of approach coping styles .Through that study it indicates that male parents use more approach coping styles than female parents. And male parents are equally satisfied with their lives. This study aims to use effective coping strategies and parenting styles to improve the quality of life of parents of those who are having children with disability. It also aims to increase the role of the clinical psychologist in the treatment of those children who are suffering from disability or psychological illness and also psych educate parents those are directly or indirectly taking pain of their children.
 
 

Formação Parental: avaliação do impacte na família

Neste estudo apresenta-se o impacto de um programa de formação de pais (PFP) em algumas das dimensões do contexto familiar. O PFP teve como objectivos: melhorar o nível de informação dos pais; fortalecer as competências parentais; melhorar a percepção do funcionamento familiar e do suporte social. Organizou-se em 12 workshops para pais. Participaram neste estudo mães de crianças com sídroma de Down, com idades compreendidas entre os 6 e os 48 meses de idade, que foram incluída em um de dois grupos: grupo convencional (N=17) e grupo experimental (N=22), que foram comparados nos pré e pós-teste. No pré-teste não se verificaram diferenças significativas em nenhuma das seguintes variáveis: sexo da criança; idade cronológica e de desenvolvimento; nível de instrução da mãe; e estatuto socioeconómico da família. As análises estatísticas evidenciaram diferenças significativas (aumento) no sentimento de competência maternal, no funcionamento familiar e na percepção de utilidade de redes informais/grupos sociais, observadas apenas no grupo experimental. Os participantes apresentaram níveis elevados de satisfação com o programa.DOI: http://dx.doi.org/10.17575/rpsicol.v17i1.446

Micronucleated lymphocytes in parents of Down syndrome children

Down syndrome (DS) is the most common disease due to an autosomal aneuploidy in live born children and also the major known genetic cause of mental retardation. The risk of a DS pregnancy increases substantially with increasing maternal age. However, several women aged less than 35 years at conception have a child with DS. The micronucleus (MN) assay can identify chromosome breakage or chromosome malsegregation and is an ideal biomarker to investigate genomic instability. The aim of the present study was to determine the frequency of peripheral lymphocytes with MN in the parents of DS individuals. The subjects were 17 couples, 1 father and 9 mothers, and 24 couples who had at least one healthy child formed the control group. For each individual we evaluated the frequency of binucleated micronucleated lymphocytes (BNMN%) as number of binucleated lymphocytes containing one or more MN per 1000 binucleated cells. The mean age of DS parents and controls was 32.6 and 29.8 years, respectively. The frequency of MN in DS parents was significantly higher compared to controls. The higher frequency of MN in DS parents suggests a higher predisposition of DS parents to aneuploidy events in this sample.

Toward a suitable concept for tutoring

Empirical studies of tutoring during the second year of life seem to have been marked by an implicit idea of causality oriented from the adult toward the child. Consequently, little attention has been paid to reciprocal relations. The study of deficiencies opens a field in which the child’s characteristics are important in the establishment of interactions and in the development of the psychological activities that are linked to them. From this perspective of analysis, this article examines the influence of the particular characteristics of children with Down syndrome (due to trisomy 21) on interaction in parental tutoring. Thirty-six parent-non deficient child dyads (14, 18 and 22 months) and thirty six parent-Down syndrome child dyads (matched to the latter in developmental age) were observed during a shape-fitting activity. Results show that the instructions given by parents of Down syndrome children are better adapted to furthering autonomy than the instructions given by parents of non deficient children. The results are discussed in terms of what may condition different types of parental help.

Delineating Sources of Stress in Parents of Exceptional Children

This study compares the levels of perceived stress on several dimensions of parenting in mothers and fathers of conduct disorder, autistic, Down syndrome, and normal children. Results showed that mothers and fathers report very similar levels of stress when parenting exceptional children, although their patterns of stress change as a function of the child's difficulties. Parents of conduct disorder children are most stressed, closely followed by parents of autistic children, while parents of Down syndrome children closely resemble and, in some respects, appear less stressed than parents of normal children. These results, and their implications for research and intervention, are briefly discussed.

39 DOWN SYNDROME: SURVEY

Questionnaires were sent to parents of Down syndrome children in 1970 and 1974 attempting to determine their views on various subjects relating to having a child with Down syndrome. Because of some of the fallicies present in questionnaires, in 1977, parents were interviewed and asked the same questions. A total of 194 answered the questionnaire and 35 were interviewed. We were interested in determining if having a Down syndrome child had any effect on the marriage. In 1970 and 1974, 38 percent of the respondents answered that their relationship had changed in a positive manner since having a child with Down syndrome. Fifty-eight percent said there was no change and 3 percent said there was a negative change. Of the parents interviewed, 46 percent said they had a more positive relationship with their spouse, 49 percent said there was no change and 6 percent said there was a negative relationship. In 1974, 15 percent of the parents believed they had a more positive relationship with their other childen since having a child with Down syndrome. In 1977, more fathers than mothers believed they had a more positive relationship when compared to the 1974 figures. Generally, as the children became older there were no significant changes in the parents' responses. The divorce rate in the 1970 and 1974 survey was 4 percent. There were no divorces in the smaller interview group.