Representation of People with Intellectual Disabilities in a British Newspaper in 1983 and 2001

Background Media representation of people with intellectual disabilities may contribute to general perceptions held about them and reflect changes in policy and service provision. Materials and Methods Articles from The Guardian newspaper in 2001 were analysed and compared to a previous analysis of material published in 1983. Results There was much more coverage of people with autism or Down syndrome than expected from their actual frequency in the British population of people with intellectual disabilities. Newspaper reports continued to be about children more often than expected when about autism or Down syndrome, but not when about people with other intellectual disabilities. Medically related representations were less than in the past but juxtaposition with other client groups continued. More ‘people‐first’ terminology was now used except in respect of people with autism. Articles systematically under‐represented complexity and severity of need. Conclusions Policy and service changes may have contributed to the decline of medically‐ and child‐related representations within non‐specific intellectual disabilities. The continued over‐representation of children in articles about autism and Down syndrome, and the generally increased reference to people with those syndromes, suggests growing differentiation within the population of people with intellectual disabilities. The focus on people with less severe or complex disabilities echoes criticisms of Valuing People.     

Families of children with Down syndrome: responding to "a change in plans" with resilience

The purpose of the present investigation, which was guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation, was twofold: (a) to describe maternal perceptions of parental and family adaptation in families raising a child with Down syndrome, and (b) to examine linkages between family demands, family resources, family problem solving and coping, and family adaptation in families of children with Down syndrome. Seventy-six mothers completed mailed questionnaires. Seventy percent of the mothers rated their family's overall functioning as either a 4 or a 5 on a 5-point scale (1 = poor; 5 = excellent). In their written comments, most mothers reported that their family was doing well or very well. Three family variables (i.e., family demands, family resources, and family problem-solving communication) were significantly associated with family adaptation. These results provide support for the belief that many families of children with Down syndrome respond to "a change of plans" with resilience. That is, they are able to endure, survive, and even thrive in the face of ongoing challenges associated with raising a child with Down syndrome.     

Parental and family well-being in families of children with Down syndrome: a comparative study.

The purpose of this study was to examine the effects of a child with Down syndrome on the individual functioning of both parents, marital functioning, and family functioning. Thirty-four families of children with Down syndrome were compared to 41 families with nondisabled children. Mothers and fathers in both groups completed a series of self-report measures. No significant differences were obtained between the two groups of families on any of the measures of individual, marital, or family functioning. The results of this study support a competence model in which parents may respond to the challenges associated with parenting a child with Down syndrome with resilience and adaptive functioning.     

"It's not what you were expecting, but it's still a beautiful journey": the experience of mothers of children with Down syndrome

Aim: The purpose of this study was to describe qualitatively the experience of parenting for mothers of a child with Down syndrome and to explore what if any was the role of spirituality and organized religion in this experience. Method: A homogenous sample of eight mothers of children between 7 and 12 years of age with Down syndrome was recruited through a population-based source of families of children with Down syndrome in Western Australia. In-depth interviews were used to explore the mother's experience of parenting and to examine the role of spirituality and organized religion in their personal experience of mothering. Results: In this study, stressful life events recounted by the mothers included initial acceptance, developmental behaviour of the child, functionality of the child, health conditions and financial stress. Overall spirituality was described as a stronger and more dynamic source of support than organized religion in coping with stressors and life's challenges associated with raising a child with Down syndrome. Conclusion: Findings from this study revealed that being a mother to a child with Down syndrome can best be described as a mosaic of experiences, emotions and a journey of self growth. Both spirituality and organized religion to a greater or lesser extent were useful in mediating stress and supporting mothers particularly during challenging life events in the course of their journey with their child with Down syndrome. [Box: see text].     

Experiences of mothers of children with Down syndrome

This qualitative study explored the experiences and lifestyles of families in Turkey with children with Down syndrome, including the impact on family members. Twelve mothers with a Down syndrome child (three from each of the age groups 1-3 years, 4-6 years, 7-12 years and 13-18 years of age) participated in the study. The data were collected during in-depth interviews and were evaluated using qualitative data analysis methods. Families were affected socially, physically, economically and emotionally by having a child with Down syndrome.     

Pain in Children with Down Syndrome: Assessment and Intervention by Parents

The aims of this study were: 1) to describe how parents assess pain in their child with Down syndrome; and 2) to examine the relationship between pain assessment and decisions by parents to intervene to relieve pain in the child. Twelve parents of school-age children with Down syndrome (ages 6-12 years) were interviewed. Data analysis followed Spradley's Developmental Research Sequence (1979). This included domain analysis, taxonomic analysis, componential analysis, and theme development. Four themes emerged from the data analysis. Theme 1: Being sensitive to verbal and behavioral attributes of pain in the child. Parents reported that they assessed pain in their child with Down syndrome through the child's use of words to express pain, pointing or showing pain location, crying, changes in usual activities, and seeking closeness to the parent. Theme 2: Recognizing emotional and social responses to pain. Parents reported that emotional responses (e.g., anger, fear, frustration, acting out) were part of the pain expressions of their child with Down syndrome. Theme 3: Identifying differences in pain expressions between child and siblings. Parents used strategies to assess pain based on their beliefs that the child was less verbal, slower to complain, and less bothered by pain than siblings. Strategies included questioning the child to elicit self-reporting of pain and observing the child's behaviors. Theme 4: Making decisions to intervene. Parents reported that actions to relieve pain in their child with Down syndrome included more psychologic measures than physical measures, but otherwise no differences were noted in the actions taken for the child and the child's siblings.     

Care demands on mothers caring for a child with Down syndrome: Malaysian (Sarawak) mothers' perspectives

This paper examines the experiences of mothers caring for a child with Down syndrome in the Malaysian (Sarawak) context. Qualitative interviews were conducted with 26 biological mothers of children with Down syndrome aged 18 years and below. They were accessed through selected child health clinics, community‐based rehabilitation centres and schools using purposive sampling within two regions in Sarawak, one of the two Borneo States of Malaysia. Major themes emerging within the context of care demands were children's health, developmental delays, daily needs and behaviour issues. The insights obtained into the care demands experienced by mothers of children with Down syndrome have several implications for practice by care professionals.     

Individual and family adaptation in Taiwanese families living with down syndrome

The primary aim of this study was to examine the effects of family demographics, family demands, and family appraisal on adaptation in Taiwanese families of children with Down syndrome. A second aim was to assess the potential mediating effect of family appraisal on the relationship between family demands and adaptation. Eighty-three families completed mailed questionnaires. Data were analyzed using a principal component analysis and a mixed linear modeling. Gender, family demands, and family appraisal were significantly associated with individual health. Age of the child with Down syndrome, family demands, and family appraisal significantly accounted for family functioning. Family appraisal partially mediated the relationship between family demands and individual and family adaptation. Identification of family factors that influence adaptation will help in the development of culturally sensitive interventions to improve outcomes in Taiwanese families of children with Down syndrome.     

Age-Related Differences in Smiling and Personality in Down Syndrome

In this study, we explored age-related differences in smiling and related personality characteristics in individuals with Down syndrome. Participants were 65 children, adolescents, and young adults with intellectual disabilities aged 5–20 years (Down syndrome: 42, mixed etiologies: 23) and their parents. Both directly observable measures of social behavior (smiling frequency and duration) and parent report measures of child personality (subdomains of the Reiss profiles and Achenbach’s child behavior checklist) were examined. Significant interactions between group (Down syndrome versus mixed) and age were observed for smile frequency (decreased with age in Down syndrome), smile duration (decreased with age in Down syndrome), attention seeking (decreased with age in Down syndrome), and anxious/withdrawn (increased with age in Down syndrome). Relationships between smiling behavior and personality/psychopathology dimensions are also reported for both groups. Implications for developmental approaches to studying outcomes in specific genetic disorders are discussed.     

Down syndrome: An integrative review

Down syndrome is a complex genetic disorder resulting in three copies of chromosome 21. Babies with this genetic disorder will have recognisable characteristic facial features that will differ from one baby to another. They will also have some degree of cognitive impairment and learning difficulties. There are many medical conditions associated with Down syndrome, however, due to recent medical advances there have been improvements in their health and longevity. This has led to a rise in people with Down syndrome developing Alzheimer's disease as they age.The purpose of this review is to provide insight into the impacts that Down syndrome has on foetal development as well as ongoing health issues up to adulthood. There were many ethical issues raised surrounding the Baby Doe case and will also be explored in this review. CINAHL (EBSCO) was the primary medical database for this review retrieving 147 results in relation to Down syndrome and foetal development. An additional search was made retrieving 12 results in relation to ethical issues surrounding prenatal diagnosis of Down syndrome. Further resources such as websites and neonatal nursing textbooks were also used.This review aims to provide a snapshot of Down syndrome with consideration given to the short and long-term outcomes for the baby, and the consequences for the growing child and his/her family. It is essential for neonatal nurses to understand the complexities of this genetic disorder, how to care for babies with Down syndrome, and how to provide support to parents and families.     

Leisure participation for school-aged children with Down syndrome

Purpose.?To describe leisure participation for school-aged children with Down syndrome and to investigate how factors, classified by the World Health Organisation's International Classification of Functioning, Disability and Health, influence their leisure participation.

Method.?Families in Western Australia with a child aged 5–18 years with Down syndrome were surveyed in a population-based study (n == 208) in 2004.

Results.?One-third of parents reported that their child with Down syndrome had no friends although half reported two or more friends. Factors affecting number of friendships included the child's functional ability, behavioural issues and parent's availability of time. Those children with higher functional independence scores in daily tasks were more likely to have two or more friends than those with lower functional independence scores (OR: 1.02, 95%% CI 1.01–1.04 for a single point increase in WeeFIM score). All children participated in predominantly solitary and sedentary leisure activities.

Conclusions.?Leisure participation was affected by complex factors both within and external to the child with Down syndrome. Further investigation of the relevance of these factors to leisure may enable more satisfying and meaningful participation in leisure for school-aged children with Down syndrome.     

Maternal perceptions of family-provider relationships and well-being in families of children with Down syndrome.

The purpose of this study was twofold: (a) to describe parental perceptions of family-provider relationships, and (b) to explore links between parental perceptions of family-provider relationships and well-being in families with children who have Down syndrome. Mailed questionnaires were used to collect data from 94 families that include a child with Down syndrome. Data from 89 mothers are the focus of this report. The results indicate that when mothers of children with Down syndrome believe that their family's relationship with health care providers is positive and family-centered, they feel more satisfied with the care that their child is receiving and they are more likely to seek help from health care providers. In addition, when a discrepancy exists between what mothers want the family-provider relationship to be and what they believe the relationship is, mothers feel less satisfied with the care that their child is receiving. Finally, higher levels of individual and family well-being are reported by mothers who (a) want, and believe they have, positive family-centered relationships with providers, and (b) feel more satisfied with care received. Results of this study contribute to a better understanding of the role that health care providers play in individual and family adaptation to chronic conditions.     

Haemophilus influenzae serotype f purulent pericarditis: a cause of death in a child with Down syndrome

Purulent pericarditis is a cardiac emergency that can be difficult to diagnose and can be rapidly fatal. We report the case of a child with Down syndrome and recent atrial and ventricular septal defect repair who died from Haemophilus influenzae serotype f pericarditis.     

The genetic sonogram: a method of risk assessment for Down syndrome in the second trimester.

OBJECTIVE: To determine the risk of Down syndrome in fetuses with sonographic markers using the Bayes theorem and likelihood ratios. METHODS: We prospectively evaluated the midtrimester sonographic features of fetuses with Down syndrome and compared them with euploid fetuses. Patients were referred for an increased risk of aneuploidy and evaluated for the presence of structural defects, a nuchal fold, short long bones, pyelectasis, an echogenic intracardiac focus, and hyperechoic bowel. All fetuses underwent amniocentesis at the time of sonographic assessment. The sensitivity, specificity, and likelihood ratios for markers were calculated both as nonisolated and isolated findings. RESULT: There were 164 fetuses with Down syndrome and 656 euploid fetuses. The presence of any marker resulted in sensitivity for the detection of Down syndrome of 80.5% with a false-positive rate of 12.4%. The absence of any markers conferred a likelihood ratio of 0.2, decreasing the risk of Down syndrome by 80%. As an isolated marker, the nuchal fold had an "infinite" likelihood ratio for Down syndrome; a short humerus had a likelihood ratio of 5.8, whereas structural anomalies had a likelihood ratio of 3.3. Other isolated markers had low likelihood ratios because of the higher prevalence in the unaffected population. The likelihood ratios for the presence of 1, 2, and 3 of any of the markers were 1.9, 6.2, and 80, respectively. CONCLUSIONS: Although an isolated marker with a low likelihood ratio may not increase a patient's risk of Down syndrome, the presence of such a marker precludes reducing the risk of aneuploidy. Clusters of markers appear to confer a higher risk.     

Parental satisfaction with an early family intervention program

The objective of this study was to evaluate parental satisfaction with a family intervention program. The program provides help and support for parents with newborns who have specific health problems (e.g., cleft palate and/or lip; Down syndrome). Four family subscales, personal (emotional and cognitive), marital, parental, and extended family and others, were examined. The majority of parents were satisfied with the intervention. Most felt that the intervention had helped them to adapt to the unexpected situation. They received guidance in discerning and discussing their own emotions and those of their partner or spouse, and the help they received gave them confidence about the care their child would receive. Results revealed significant differences in satisfaction levels (depending on the sex of the parent), the child's diagnosis, and annual income. Mothers of newborns with Down syndrome were more satisfied than fathers with the personal-emotional support they received. Low-income families were more satisfied than those with higher incomes for all subscales. On the parental subscale, those whose child had a cleft lip/palate were more satisfied than those whose child had Down syndrome. The results raised several important questions about this type of early intervention program, which will require further in-depth investigation.     

Parental perceptions of sibling relationships in families rearing a child with a chronic condition

This study examined sibling relationships in families raising children with autism, Down syndrome, orthopedic conditions, and diabetes. Parents from 108 families independently completed the 28-item Schaefer Sibling Inventory of Behavior. Parents rated siblings as very empathetic, fairly often kind and involved, and rarely avoidant. Mothers rated sibling empathy higher than fathers did and older siblings more avoidant than younger siblings. Fathers rated male siblings kinder than female siblings; they also rated siblings of children with Down syndrome or autism more kind and involved than siblings of children with orthopedic conditions or diabetes. Sibling intervention efforts should consider these findings and be individualized according to the need of each child and family.     

Functional performance characteristics associated with postponing elementary school entry among children with Down syndrome.

OBJECTIVES: This study investigated the relation between functional performance skills of children with Down syndrome and the age of entry into mainstream elementary education. METHOD: In a cross-sectional study of 70% of the 7-year-old children with Down syndrome in Norway (N = 43), we measured functional performance using the Pediatric Evaluation of Disability Inventory (PEDI). The study was a follow-up of a previous study of the same children at age 5 assessed using the same instrument. Data from both studies were used in the analysis. RESULTS: Forty percent of the sample of children with Down syndrome in Norway had entered elementary school after a 1-year postponement (i.e., at age 7). The functional performance skills of the children, as measured using the PEDI, were significantly lower at both age 5 and age 7 in self-care and social function compared with children with Down syndrome who entered elementary school at the usual time (i.e., at age 6). The main characteristics associated with postponed elementary school entry were found in communication skills and bladder and bowel management. CONCLUSION: A certain level of development and independence seems to be required for a child with Down syndrome to be viewed as ready to enter elementary school, and perceptions of readiness for school may be culturally dependent. In addition to the well-described challenges in language and communication skills, being viewed as ready for school includes having stopped using diapers, a topic not previously mentioned as a factor in postponing elementary school entry for children with Down syndrome. Awareness of culturally influenced performance skills may give direction to parents and professionals in targeting areas in the preschool years that might help promote these children's readiness for school.     

Evaluation of cell-free fetal DNA as a second-trimester maternal serum marker of Down syndrome pregnancy

BACKGROUND: Second-trimester cell-free fetal DNA (studied only in pregnancies with male fetuses) is higher in maternal serum samples from women carrying Down syndrome fetuses than in unaffected pregnancies. In this study we evaluated the potential performance of fetal DNA as a screening marker for Down syndrome. METHODS: Data on maternal serum fetal DNA concentrations and the corresponding concentrations of the quadruple serum markers were available from 15 Down syndrome cases, each matched for gestational age and length of freezer storage, with 5 control samples. Analyte values were expressed as multiple(s) of the control or population median. Screening performance of fetal DNA, both alone and when added to estimates of quadruple marker performance, was determined after modeling using univariate and multivariate gaussian distribution analysis. RESULTS: The median fetal DNA concentration in Down syndrome cases was 1.7 times higher than in controls. In univariate analysis, fetal DNA gave a 21% detection rate at a 5% false-positive rate. When added to quadruple marker screening, fetal DNA increased the estimated detection rate from 81% to 86% at a 5% false-positive rate. CONCLUSIONS: Cell-free fetal DNA, measured in maternal serum, can modestly increase screening performance above what is currently available in the second trimester. If and when maternal serum fetal DNA can be measured in pregnancies with both male and female fetuses, the utility and cost-effectiveness of adding it as a Down syndrome screening marker should be assessed.     

An 8-center study to evaluate the utility of mid-term genetic sonograms among high-risk pregnancies.

OBJECTIVE: A multicenter study was undertaken to evaluate the diagnostic efficacy of a genetic sonogram. METHODS: Eight centers provided data on 176 pregnancies complicated by fetal Down syndrome. One hundred thirty-four pregnancies were considered high risk because of advanced maternal age (> 35 years), and 42 were considered high risk for having "abnormal" triple-screen results (risk > 1:250). Each center provided fetal biometric data, information regarding the presence or absence of major structural abnormalities, and between 3 and 6 additional ultrasonographic markers for trisomy 21. The heterogeneity of our 8 independent "sensitivity estimates" was evaluated by Poisson regression, and a single combined estimate of the sensitivity was calculated. RESULTS: Of the total 176 cases of trisomy 21, 125 fetuses (71.0%) had either an abnormal long bone length (femur length, humerus length, or both), a major structural abnormality, or a Down syndrome marker. The combined diagnostic sensitivity was 71.6%, with a range of 63.6% (7 of 11) to 80% (8 of 10). Five centers had sensitivity estimates falling between 64% and 76%. The sensitivity of individual markers varied between 3% (sandal gap) and 46.5% (nuchal skin fold thickness). A condensed regimen of nuchal skin fold thickness, femur length, and a standard anatomic survey would screen in 56.8% of fetuses with Down syndrome. CONCLUSIONS: This 8-center study that included many fetuses with Down syndrome validates the concept that the genetic sonogram can be used to better adjust the Down syndrome risk for high-risk patients.