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PubMed2005

Self-perceived quality of life of children and adolescents with physical disabilities in Hong Kong.

Although illnesses and diseases are thought to adversely affect quality of life (QoL), whether children who have physical disabilities (PD) from a young age adapt to the effect of developmental disabilities has rarely been investigated. This study attempted to assess the subjective wellbeing, and examine the correlation between objective and subjective QoL, of children with PD. Using a self-reported non-disease-specific questionnaire, the QoL of 72 young persons (13.5+/-2.0 years) with PD was contrasted with those who do not have disabilities (n = 510; age-matched). MANOVA analyses revealed that the PD group had lower objective QoL score (63.0+/-7.4 vs. 66.8+/-5.7, p < 0.001) but the two groups were not significantly different in subjective QoL score (70.9+/-11.4 vs. 69.6+/-13.6, p = 0.466). No correlation was found between objective and subjective QoL in the PD group (r ranged from 0.06 to 0.19), while weak to medium correlations (r ranged from 0.03 to 0.41) were observed for the controls. The apparent detachment of subjective feeling and objective circumstances in the PD group may reflect adjustment to developmental disabilities.

Adolescent↗
PubMed2001

Can the checklist for autism in toddlers differentiate young children with autism from those with developmental delays?

OBJECTIVE: The Checklist for Autism in Toddlers (CHAT) has been demonstrated to be sensitive to the presence of autism in otherwise normally developing 18-month-old children. However, its ability to differentiate autism from other significant developmental delays is unknown. This study examined this question. METHOD: The CHAT was applied to a group of 44 children aged 2 and 3 years, rigorously diagnosed with autism or with other developmental problems. RESULTS: By the original CHAT authors' criteria, the sensitivity and specificity of the CHAT were 65% and 100%, respectively. Slightly altering the criteria resulted in a sensitivity of 85% in the current group of children with developmental disabilities while maintaining specificity of 100%. CONCLUSIONS: The current study is the first to demonstrate that the CHAT successfully discriminates 2-year-old children with autism from those with other developmental disorders. In addition, the increased sensitivity of the Denver Criteria in children with developmental disabilities may improve its usefulness as a screening tool for community-based early-diagnostic teams and general practitioners.

Autistic Disorder↗
PubMed1989

Permanency planning for children and youth: out-of-home placement decisions.

This article advocates the extension of "permanency planning" in out-of-home placements to include those children and youth with developmental disabilities. It discusses permanency planning and notes its promise in improving the opportunities of all children and youth to grow up in a stable family environment. There is a need for major initiatives in this area: 78% of children and youth with developmental disabilities who are placed in long-term care have no such protections. Though some states currently operate programs according to the principles of permanency planning, significant changes in existing federal policy are recommended to require permanency planning in federally supported out-of-home care for all children, including those with severe disabilities.

Adolescent↗
PubMed2003

Spasticity of the pelvic floor mimicking an obstructive anomaly.

STUDY OBJECTIVE: Hematocolpos or hydrocolpos in menstruating women raises suspicion of a partial uterine or vaginal obstruction. The study objective is to report two unusual cases of a spastic pelvic floor leading to urine collecting in the vagina and mimicking an outflow obstruction. DESIGN, SETTING, PARTICIPANTS: The study took place at a tertiary care university's Reproductive Health Care Clinic for Women with Developmental Disabilities and involved two patients with spastic quadriplegic cerebral palsy and developmental disabilities who presented with irregular menses and abdominal pain and whose radiological evaluations were suspicious for an outflow obstruction. Medical records, including clinic visits, radiological findings, and surgical findings, were reviewed. INTERVENTIONS: Both patients underwent ultrasound and MRI evaluation of their reproductive tracts that demonstrated fluid collections in the vagina. An examination under anesthesia was performed in one patient to rule out an obstruction. In the second patient, a pelvic examination under ultrasound observation revealed initial vaginal distension with urine, which resolved after placement of a speculum. RESULTS: In both cases, the pseudo-obstruction was felt to be a urine-distended vagina due to a spastic pelvic floor. CONCLUSION: A spastic pelvic floor in an incontinent patient with spastic quadriplegia may result in urine accumulation in the vagina, mimicking an outflow tract obstruction. If the history, pelvic examination, and radiological images are inconsistent, performing an ultrasound-guided examination may assist with diagnosis.

Adolescent↗
PubMed1998

Angelman syndrome: are the estimates too low?

More than 300 cases of Angelman Syndrome (AS) have been reported. AS is still considered a clinical diagnosis because only approximately 80% of those individuals who meet the clinical criteria will have a maternal deletion of chromosome 15q11-13. Of the reported cases of AS, very few are of adults with AS. We present our findings on 11 adults with AS identified in a long-term residential care facility for persons with severe developmental disabilities. The diagnosis of AS was not recognized at the time of their admission but was established as part of our evaluation. Thus, there may be an underestimate of the true incidence of AS especially in adults with severe developmental disabilities.

Adolescent↗
PubMed1996

Children with benign focal sharp waves in the EEG--developmental disorders and epilepsy.

Focal sharp waves (shw) in the childhood EEG with predominantly centrotemporal localization are a diagnostic hallmark of idiopathic partial epilepsy and have been shown to be genetically determined. Absence of neurological and neuropsychological impairment was long considered to be a prerequisite for diagnosis. For years, this diagnostic paradigm obscured the large phenotypic variability of genetically determined focal shw. The purpose of the present review is to survey and critically evaluate the widely dispersed literature on this topic. Two main groups can be distinguished: Idiopathic partial epilepsies and specific developmental disorders such as dysphasia, dyslexia etc. These conditions, however, do not represent clear-cut nosologic entities, but exhibit large symptomatic overlaps. In non-epileptic children, developmental disabilities constitute the main symptoms, in epileptic children-at least in non-selected groups-they are an optional feature. Conversely, epileptic phenomena can dominate the clinical picture or be an optional symptom in developmentally disabled children. The wide spectrum of epileptic and non-epileptic disorders probably represents the multifarious clinical manifestations of a common widespread, genetically determined pathogenetic mechanism. The marked age-dependency of the EEG and clinical symptoms, and the almost regular disappearance of both at puberty appear to justify the hypothesis of a hereditary impairment of brain maturation. The large phenotypic variability can be explained by differences in location and extent of the maturational disturbance as well as by the effect of additional genetic and environmental factors. The nature and cause of the hypothetical maturational disturbance are still unknown.

Adolescent↗
PubMed2006

Stress trajectories in mothers of young children with Down syndrome.

BACKGROUND: In this study, we investigated the early development of stress in mothers of children with Down syndrome, compared with mothers of children with developmental disabilities of mixed aetiologies. Growth modelling analyses were used to explore: (1) whether mothers of children with Down syndrome demonstrated distinct patterns of stress during their children's early development, compared with mothers of children with other developmental disabilities; and (2) whether there was a relation between child behavioural characteristics and the level and rate of change in stress observed in each population. METHOD: The stress trajectories of mothers of young children with Down syndrome (n = 25) and a mixed-aetiology comparison group (n = 49) were estimated, using growth modelling on data collected at ages of 15, 30 and 45 months. RESULTS: On average, stress in the mixed comparison group was higher at Time 1 and remained unchanged over time, while stress in the Down syndrome group was lower at Time 1 but increased steadily. After taking diagnostic group membership into account, more advanced cognitive-linguistic functioning and lower levels of maladaptive behaviours at all time points were associated with lower levels of maternal stress. CONCLUSIONS; These findings suggest that the cognitive-linguistic and behavioural trajectory observed in early development in Down syndrome may contribute to the changes in maternal stress levels observed throughout these early years. Implications for developing targeted and time- sensitive family interventions for families of children with Down syndrome are discussed.

Adult↗
PubMedDate not supplied

Slipping through the cracks. Dental care for older persons with intellectual disabilities.

An increasing population of men and women with intellectual disabilities and other developmental disabilities is reaching older ages. As our country continues the process of deinstitutionalization, these individuals will require treatment in communities. Dental practitioners increasingly will be involved in the needs of this population, many of whom are members of families being treated in private dental practices. A review of these developments and the particular dental needs of these patients is considered.

Aged↗
PubMed1986

Interaction of mothers with their infants who are mentally retarded, retarded with cerebral palsy, or nonretarded.

Mother-infant interaction was observed during 15 minutes of free play in the homes of 40 families with 8- to 36-month-old infants from the following groups: mentally retarded, both retarded and cerebral palsied, nonretarded MA-matched, nonretarded CA-matched. One-way, repeated measures analyses of variance followed by Tukey multiple range tests for the paired contrasts indicated that mothers of both groups of developmentally disabled infants were more directive than the mothers of the nonretarded infants. Developmentally disabled infants were more compliant than both groups of nonretarded infants. They also demonstrated an overall lower level of behavior and engaged in less verbal interaction than the nonretarded CA-matched infants. Physical contact was more frequent for cerebral palsied infants and their mothers than for all other mother-infant groups. The communicative patterns reported for these groups were interpreted according to Bell's (1971) limiting control strategy, which predicts that mothers tolerate infant behavior within their expectations and actively attempt to keep their infants' behavior within these boundaries.

Cerebral Palsy↗
PubMed2006

Prevalence and psychosocial correlates of global developmental delay in 3-year-old children in the United Arab Emirates.

OBJECTIVE: Developmental disabilities are lifelong conditions with considerable public health impact, incurring substantial financial and societal costs. Data on prevalence and associated factors can provide the basis for setting priorities and designing interventions. METHODS: A representative random sample of 694 United Arab Emirates national children aged 3 years were evaluated in a two-stage epidemiological study. RESULTS: Stage 1 screening using the Denver Developmental Screening Test found that 8.4% [confidence interval (CI): 6.4-10.7] had global developmental delay (GDD). Using clinical diagnostic interview in Stage 2, the weighted prevalence for clinically significant developmental disability was estimated to be 2.44% (CI: 1.28-3.56). GDD was associated with pregnancy and birth complications, poor maternal education, family history of developmental problems, and major traumatic life events, as well as behavioral problems in children. CONCLUSION: Our findings suggest the need for comprehensive and early screening programs for developmental problems, and the importance of training medical and child care professionals accordingly.

Child, Preschool↗
PubMed2005

Pediatricians' reported practices regarding developmental screening: do guidelines work? Do they help?

BACKGROUND: In 2001, the American Academy of Pediatrics (AAP) adopted a policy that all infants and young children should be screened for developmental delays at regular intervals. The policy statement promoted the use of valid reliable instruments. It is unknown, however, what proportion of pediatricians follow this recommendation and whether such a practice is associated with improved identification of children with developmental difficulties. OBJECTIVES: To describe the use of developmental screening tests among board-certified pediatricians practicing general pediatrics and to determine the association between standardized screening and the self-reported identification of children with developmental difficulties. METHODS: We mailed a survey to a random sample of AAP members. We used multivariate logistic/linearregression analyses to determine the association between standardized screening and the self-reported identification of children with developmental disabilities. RESULTS: Of the 1617 surveys mailed, 894 were returned, for a response rate of 55%. Of the respondents, 646 practiced general pediatrics and were included in the analysis. Seventy-one percent of those pediatricians indicated that they almost always used clinical assessment without an accompanying screening instrument to identify children with developmental delays. Only 23% indicated that they used a standardized screening instrument. The most commonly used instrument was the Denver II. Logistic regression modeling demonstrated odds ratios between 1.71 and 1.90 for a >10% rate of identification of developmental problems among patients of pediatricians reporting standardized screening. Each adjusted odds ratio bordered on statistical significance. Linear-regression models estimating the difference in mean proportions of children identified with developmental problems across screening groups failed to show a statistically or clinically significant difference in physician-reported identification rates. CONCLUSIONS: Our findings indicate that, despite the AAP policy and national efforts to improve developmental screening in the primary care setting, few pediatricians use effective means to screen their patients for developmental problems. It is uncertain whether standardized screening, as it is practiced currently, is associated with an increase in the self-reported identification of children with developmental disabilities.

Child, Preschool↗
PubMed2006

Predicting additional care in young children with neurodevelopmental disability: a systematic literature review.

Children with developmental disabilities often show a variety of associated impairments that lead to a lifelong need for additional care. Careful assessment of these impairments is required not only for diagnostic purposes but also to inform the parents about the expected additional care needs in the future. We present a systematic review of the literature to identify instruments that classify the type and amount of this care for the individual child. A literature search was performed in the Medline database (January 1966 - June 2005) on instruments that classify the type and amount of expected additional care needs in the future. Seven standardized measurement instruments describing current additional care needs were identified, but none of these instruments was developed to provide information about the expected need for additional care in the future. For parents of young children with non-progressive developmental disorders it is essential to be informed on the expectations of required additional care in the future. However, comprehensive instruments providing such information are currently lacking and, thus, need to be developed.

Child↗
PubMedDate not supplied

Shifts in parent-therapist partnerships: twelve years of change.

OBJECTIVE: A national survey was conducted to identify occupational therapists' current attitudes and values in their working relationships with parents of preschool children with developmental disabilities. This study replicated a 1987 national survey that examined therapists' relationships with parents of preschool children with cerebral palsy. METHOD: Surveys were sent to a random sample of 400 therapists, with 199 returned from respondents who identified themselves as working with preschool children with developmental disabilities. After calculating descriptive statistics for each item in the survey, a one-way analysis of variance was performed to test for differences based on four demographic variables. RESULTS: Respondents reported that working with parents, more than any other aspect of intervention, had the greatest impact on the progress of a child with disabilities. Consistent with the 1987 survey, respondents believed that parents focus on their own adjustment to their child's disability as well as on their child's progress more than any other issues. Therapists continue to report satisfaction when generating positive change for child and parent through education and use of clinical knowledge and skill. CONCLUSION: Results suggest that efforts to foster family-centered intervention in occupational therapy educational programs are increasing therapists' confidence and skills in working with parents of children with disabilities. Implications for occupational therapy practice and education include a need for therapists to expand their knowledge and expertise in working effectively with vulnerable families. Educators need to focus on teaching strategies not only to refine the role of occupational therapy as a direct treatment provider, but also to incorporate creative ways to deal with the psychosocial issues of parents and families.

Adult↗
PubMed2001

Examination of relative reinforcement effects of stimuli identified through pretreatment and daily brief preference assessments.

Several brief preference assessments have recently been developed to identify reinforcers for individuals with developmental disabilities. One purported advantage of brief assessments is that they can be administered frequently, thus accommodating shifts in preference and presumably enhancing reinforcement effects. In this study, we initially conducted lengthy paired-choice preference assessments and identified a hierarchy of preferred items for 5 individuals with developmental disabilities. Subsequently, brief multiple-stimulus-without-replacement assessments using the same items were completed each day prior to work sessions. On days when results of the daily brief assessment differed from the one-time lengthy assessment, the relative reinforcing effects of the top items from each assessment were compared in a concurrent-schedule arrangement. The results revealed that when the two assessments differed, participants generally allocated more responses to the task associated with the daily top-ranked item.

Adult↗
PubMed2006

Equivalence reliability of the Vineland Adaptive Behavior Scale between in-person and telephone administration.

There is a critical need to establish cost effective ways to monitor developmental progress of children at risk for developmental disabilities. The Vineland Adaptive Behavior Scale (VABS) is a well-known functional measure used for both clinical and research purposes. The objective of this study was to examine the equivalence reliability of the VABS using two different administration methods; in-person versus telephone interviews. Fifty children with or at-risk for developmental disability were tested (mean age of 77.5 +/- 18.5 months) using both interview formats. Correlations between in-person and telephone interview scores were extremely high for all subdomains including Communication (ICC = 0.99), Daily Living Skills (ICC = 0.98), Socialization (ICC = 0.96), Motor (ICC = 0.98) as well as the Adaptive Behavior Composite score (ICC = 0.99). The ability to collect reliable information on a child's developmental progress using a telephone interview format is critical, given current service delivery constraints.

Adaptation, Psychological↗
PubMed2003

Distinctive personality characteristics of 8-, 9-, and 10-year-olds with Williams syndrome.

Although previous research and clinical observation have indicated that individuals with Williams syndrome have a distinctive personality, an empirically derived personality profile has not been developed. The objective of the current investigation was to develop a personality profile that is descriptive of and distinctive to children with Williams syndrome. Participants were 23 8- to 10-year-old children with Williams syndrome and 20 8- to 10-year-old children with developmental disabilities of other etiologies. Participant groups had equivalent intellectual abilities. Parents completed measures of childhood temperament (Children's Behavior Questionnaire [CBQ]) and personality (parent report, short form of Multidimensional Personality Questionnaire [MPQ]). Using group comparisons and signal detection theory, we contrasted the personality characteristics of children with Williams syndrome and children with developmental disabilities of other etiologies. On the CBQ, high mean ratings on shyness (reverse-coded) and empathy together characterized 96% of the children in the Williams syndrome group, but only 15% of the mixed etiology group. On the MPQ, high ratings on items measuring certain characteristics combined (gregarious, people-oriented, tense, sensitive, and visible) were characteristic of 96% of the Williams syndrome group but only 15% of the mixed etiology group. The personality profiles emerging from the CBQ and MPQ provide a crucial step toward investigations of genotype/phenotype relations.

Child↗
PubMed1999

Dental treatment guidelines for use of restraints within the nine Louisiana developmental centers. Louisiana State University Dental Health Resources Program.

There are approximatively 2000 mentally retarded or developmentally disabled (MR/DD) individuals in Louisiana's nine developmental centers (LDC). Two-thirds resist the delivery of preventive and clinical dental services. Therefore, for these patients to receive quality, comprehensive dental care, some form of restraint is necessary. Physical holds, mechanical and/or chemical restraints allow caregivers and dental professionals to provide medical/dental services. However, prior to the use of restraint, a clear understanding and acquisition of informed consent are needed. The dentist, developmental center and its administration are responsible for developing a plan to obtain informed consent and to express the importance of restraint to each resident's guardian. This article defines the types of restraint based upon resistance encountered and defines informed consent according to the Louisiana Medical Consent Law.

Dental Care for Persons with Disabilities↗