Health Issues Of Children With Down Disorder Essay

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Health Issues Of Children With Down Disorder Essay

Down’s confusion is significant reason of cerebral inadequacy and acquired coronary sickness. Beside an accumulation of facial and physical appearance, Down’s confusion is connected to acquired variation from the norm of the gastrointestinal tract, an extended threat of leukemia, safe framework distortions, and an Alzheimer-like memory loss. Kids with Down disorder have numerous contortions, medicinal conditions, and psychological disability on account of the nearness of additional hereditary material from chromosome 21. Down disorder is otherwise called trisomy 21, trisomy G, and mongolism. Health Issues Of Children With Down Disorder Essay.

The principal portrayal of a youngster who apparently had Down disorder was given by Esquirol in 1838. In Europe in general, DS represents 8% of every single enlisted instance of inborn anomalies. The general rate of Down disorder worldwide is accounted for to be 1/600 to 1/800 live births. From 1979 through 2003, the commonness of DS during childbirth expanded by 31. 1%, from 9. 0 to 11. 8% for every 10000 live births in 10 US districts. In 2002, the commonness among youngsters and youths (0– 19 years of age) was 10. 3 for every 10000. In metropolitan Atlanta in 2003, there were 67 live births with DS (13. 0 for each 10, 000 live births). Not long after the chromosomal premise of DS wound up known in 1959, cytogenetic systems enabled examiners to recognize the hidden sorts of chromosome mistakes: (1) standard trisomy, (2) translocations, and (3) mosaicism (one typical cell line and one trisomic cell line)8. Since the disclosure of trisomy 21 of every 1959, it has been conjectured that the qualities that are available in 3 duplicates are overexpressed 1. 5-overlay in respect to the euploid state. The guide position of a quality in a HSA21 interim that is related with a given phenotype is another solid rule. The investigation of uncommon patients with incomplete trisomy 21 characterized the genomic districts that harbor qualities related with some DS phenotypes.

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Despite the fact that it is in some cases hard to inspect a newborn child’s eyes, it is critical to recognize youngsters with Down’s disorder who have thick inherent waterfalls. Various inconsistencies of the gastrointestinal tract have been seen in newborn children with Down’s disorder including tracheoesophageal fistula, pyloric stenosis, duodenal atresia, annular pancreas, aganglionic megacolon, and flawless rear-end.

It is of significance to analyze inborn coronary illness in early stages since a few youngsters with extreme intrinsic heart imperfections may create heart disappointment, flourish inadequately, and may secure pilmonary vein hypertension. Amid early stages nourishing issues and poor weight gain might be seen in a few youngsters with Down disorder. Health Issues Of Children With Down Disorder Essay. Scientists have endeavored to direct this examination to evaluate the pervasiveness of Down disorder patients and to check the predominance of central parity aptitudes among them.

To identify the relationship between characteristics of the child with Down syndrome and the health of their mother.

Study design

Families with a child/young adult with Down syndrome (<25 years) provided information related to the health of the child, functioning and behaviour and the health and wellbeing of the mother (n=250).

Results

The mean physical health score of mothers was 50.2 (SD= 9.6). Factors associated with lower mean physical health scores were: child having a current heart problem (p=0.036), a higher BMI (p=0.006) and higher (poorer) scores on the Developmental Behaviour Checklist (DBC). Better physical health scores were seen in mothers whose children required no help/supervision in learning new skills (p=0.008) and domestic tasks (p=0.014). The mean mental health score of mothers was 45.2 (SD= 10.6), significantly lower than the norm of 50 (p<0.0001). Associated child factors included current ear problems (p=0.079), muscle/bone problems (p=0.004), >4 episodes of illness in past year (p=0.016), and higher scores on the DBC (p<0.0001).

Conclusions

The most important predictors of maternal health were children’s behavioural difficulties, everyday functioning and current health status. Mothers of children with Down syndrome appear to experience poorer mental health and may require greater support and services to improve behaviour management skills for their child and their own psychological well-being. Health Issues Of Children With Down Disorder Essay.

Down syndrome is the most common genetic cause of intellectual disability, occurring in ~1/1000 live births in Western Australia.¹ Therefore, mothers of children with Down syndrome represent a substantial proportion of mothers of children with intellectual disability. In one study this group of mothers was reported as experiencing better psychological well-being when compared with mothers of children with autism or Fragile X syndrome.² Although experience of stress for mothers of children with Down syndrome may be lower in early childhood when compared with mothers of children with other intellectual disabilities, their stress levels have been shown to increase at a significantly higher rate as the child grows up.³ It is possible that as the child enters late childhood and middle adolescence, difficulty in obtaining services and uncertainty about the child’s future may promote stress.³

Stress can be defined as the balance between external environmental demands and the perceived internal ability to respond, and may occur when the demands prevent the pursuit of other life objectives.⁴ It is important to discern factors that modify caregiver stress. Several authors have proposed potential buffers, including: 1)Child characteristics (e.g., age, sex, behaviour); ³^–⁷ 2) Disability characteristics (e.g., burden of disease);⁴^,⁷^,⁸^,⁹ 3) Caregiver characteristics (eg age, marital status and satisfaction, coping style);⁸^,¹⁰^,¹¹ 4) Family characteristics (eg functioning, resources); ⁴^,⁵^,⁹^,¹¹^–¹³ 5) Sociological characteristics (eg social support, employment, socio-economic status);⁸^,¹¹^,¹⁴ and, 6) System characteristics (e.g. family-centred care) ⁶

The present population-based study examines multidimensional characteristics of the child with Down syndrome and how these characteristics are associated with maternal health and psychological well-being, as measured by the SF12.¹⁵ Specifically, we wanted to examine how health status, communication, behaviour and level of functioning of the child with Down syndrome relate to maternal health. Health Issues Of Children With Down Disorder Essay.

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METHODS

In 2004 all individuals with Down syndrome aged between 0 and 25 years currently living in Western Australia were identified from the IDEA (Intellectual Disability Exploring Answers) database. The IDEA database uses multiple sources.¹⁶ Ethical approval for the study has been provided by the Ethics Committee of the Women’s and Children’s Health Services in Western Australia.

With the approval of the Ethics Committee of the Women’s and Children’s Health Services in Western Australia and the backing of the Down syndrome parent support group, families of 500 children/young adults with Down syndrome registered with Disability Services Commission and able to be contacted, were invited to participate in the Down Syndrome NOW (Needs, Opinions, Wishes) study. Health Issues Of Children With Down Disorder Essay. The questionnaire consisted of two parts. Part 1 pertained to the individual with Down syndrome and included information on health, functioning and service needs, whilst Part 2 pertained to the health and well-being of their family. The measures used in this analysis are described in Table I (available at www.jpeds.com). Pilot testing with 13 families ensured that the questionnaire was relevant and captured important resource, health, functional and family characteristics whilst being sensitive to the complexity of ongoing care giving demands.

Table 1

Instruments used in Down syndrome NOW questionnaire that were included in analysis

Instrument	No. Items	Description of Instrument	Range of possible scores	Cohort mean (SD) & range of scores
SF12 Version 2¹⁵ N = 250	12	Widely used and accepted generic measure of health status that covers the areas of physical functioning, pain, health, vitality, social functioning, and mental health. The higher the score the better the person’s health.	0–100	PCS: 50.2 (9.6); 18.2–67.1 MCS: 45.2 (10.6); 2.6–66.8
WeeFIM²⁰ N = 223	18	Developed to measure the typical performance of children in essential self-care, mobility and communication-social learning skills. The higher the score the greater the child’s ability to complete essential daily tasks without parental assistance or supervision. It was previously adapted for questionnaire format in a study of children with Down syndrome.³⁸	18–126	Mean: 94.2 (25.6) Range: 24–126
Developmental Behaviour Checklist¹⁸ N = 211	96	Assesses the behaviour and emotional disturbance in children and adolescents with mental retardation. 6 subscales. The higher the score the greater the child’s behaviour and emotional disturbance.	0–300	Mean: 36.6 (22.6) Range: 1–106 Prop. ≥ 44: 31.3%
Social Communication Questionnaire¹⁹N = 213	40	A screening instrument for autism, previously known as the Autism Screening Questionnaire (ASQ) it helps evaluate communication skills and social functioning with all age groups with or without ID. Scores ≥ 15 recommended referral for a complete diagnostic evaluation	0–39	Mean: 11.1 (6.1) Range: 0–32

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Data collection was completed during 2005 with a total response fraction of 73% (n = 363/500). Three quarters of families chose to complete the questionnaire on paper, 12.6% online and 12.4% by telephone interview. There were 18 questionnaires with missing data from the SF-12 measure, 25 questionnaires were completed by the child’s father, and 70 questionnaires (short version) contained responses only to Part 1. To provide a more homogenous cohort for analysis, these 113 questionnaires were excluded, leaving a total of 250 questionnaires completed by the child’s mother.

The Physical Component Score (PCS) and Mental Component Score (MCS) measures were calculated using the algorithm provided in the scoring manual.¹⁵ The scores are derived through norm-based scoring methods using the 2002 US population so that the general population has a mean score of 50 and SD of 10 for both scales. All scores above or below 50 can be interpreted as above or below the general population norm. Health Issues Of Children With Down Disorder Essay. The SF12 has been validated as an appropriate measure in the Australian population.¹⁷

Univariate linear regression analyses were conducted separately with the SF-12 version-2 Physical Component Scale (PCS) and the Mental Component Scale (MCS) as the outcome variables of interest. We specifically selected the variables from the child’s health status, behaviour, communication and function that we thought would have the greatest effect on maternal health. These included the existence of specific health conditions (such as heart or bowel), the number of health conditions, number of episodes of illness over the last year, Developmental Behaviour Checklist (DBC)¹⁸ scores, Social Communication Questionnaire¹⁹ (SCQ) score, level of communication and understanding, level of independence in day to day activities as scored in the WeeFIM (modified for questionnaire use)²⁰ and the Body Mass Index (BMI). We considered the following as possible confounders: child’s age and mother’s age at the time of questionnaire completion, number of siblings, metropolitan/rural living, sex of the child and family income. These have been taken into account in each of the final multivariate models. The statistical package STATA 9 was used for this analysis.²¹

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RESULTS

Comparison of those included and not included in this analysis showed no significant difference in age group of the child, sex, child’s place of birth, number of siblings, maternal education, mother’s work status, family income or having a partner. There were differences between the groups in use of private health insurance (62% of those included had health insurance compared with 50% of those excluded, p=0.03), experiencing financial stress (46% of those included indicated “they could save a bit every now and then” compared with only 36% of those excluded, p=0.07), birth order of child (30% of children of those included were first-born compared with 45% of those excluded, p=0.02) and metropolitan or rural residence (29% of those included were from rural WA compared with only 15% of those excluded, p=0.04).

The majority (70.8%) of participating families lived in the metropolitan area. Of the 250 mothers completing the questionnaire, 237 were biological mothers, 11 were adoptive mothers, one was a foster mother and one was a stepmother. The mean age of the mothers at the time the questionnaire was completed was 44.4 years and the majority (88%) were married or in a de facto relationship. Just over a third (38.6%) of the mothers had obtained university qualifications and half (50.2%) were in full or part-time work. The combined gross income of families in 2004 was reported as < $26 000 (Australian dollars) by 26.2%, $26 000 to $51 999 by 30%, and > $51 999 by 43.8%. However, nearly half (46.5%) of the families described a high level of financial stress. The mean age of the child with Down syndrome was 11.9 years, and there were slightly more males (54.4%) than females (45.6%). Only 7.2% of the children with Down syndrome had no siblings, with the majority (58.4%) having 2 or 3 siblings. In those families with siblings the child with Down syndrome was the eldest in 22.4%. Health Issues Of Children With Down Disorder Essay.

The majority (60.9%) of children had 1 or 2 current health problems, with 8.9% having four or more and 16.6% having no current health problems. The most commonly reported were eye, ear and muscle/bone problems, in 52%, 32% and 22% respectively (co-occurring in a number of these). Although almost all (89.6%) mothers reported at least one episode of illness for their child during 2004, the vast majority of children (84%) did not require hospital admission. Using a cut-off of 44 (sensitivity/specificity of ~ 83%) we found that nearly a third (66/211, 31.3%) of children had scores above the clinical threshold for abnormal developmental behaviour.²² There were almost equal proportions of males and females (p=0.99). There were slightly higher proportions of children with abnormal scores in the 5–9 year age group (39.6%) and 10–13 years (37.8%), but no statistically significant differences between age groups. For children aged 12 years and older, the majority needed help with money management, shopping, using public transport and meal preparation. Health Issues Of Children With Down Disorder Essay.

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The average maternal PCS score was 50.2 (SD: 9.6), significantly higher than but within 1 SD of the Australian female norm of 48.4²³ (p=0.015). The univariate analyses found that lower mean physical health scores (ie, worse physical health) were observed in mothers of children with current heart problems (mean: 44.2; SD: 12.5) (p = 0.036) (Table II A; available at www.jpeds.com). There was no significant difference in maternal physical health based on the number of current health problems in the child nor episodes of illness. Lower physical health scores were seen in mothers of children who had higher DBC scores (ie, more dysfunctional personalities, emotions and behaviour), with significant differences seen in the disruptive/antisocial and anxiety subscales. There was no significant difference in maternal physical health based on the child’s ability to be understood, but mothers had significantly better physical health if their child understood all conversations. Significantly better physical health scores were seen in mothers of children who required no help/supervision in learning new skills (Table II A) and domestic tasks (Table II B; available at www.jpeds.com). Health Issues Of Children With Down Disorder Essay.