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Growing pains: a personal development program for students with intellectual and developmental disabilities in a specialist school.

A personal development program, entitled 'Growing Pains', was developed for 11-to 15-year-old students with intellectual and developmental disabilities in a specialist school. Seven topics were identified as important in supporting students through the physical and emotional changes of adolescence. A single-group, non-experimental outcome evaluation was conducted on a 20 week trial program. Teacher-developed checklists of observable skills were completed pre-and post-program for 68 participants yielding individual 'personal development' scores and whole group 'topic' scores, graphed to observe pre-post differences. Parents and teachers completed feedback questionnaires. Graphed data showed positive trends in individual personal development and most topic scores. The topic 'personal hygiene' showed almost no change across the group but parent and teacher feedback identified it as highly important. Causality cannot be established using this design; however, positive trends justified persisting with the program. Future studies might investigate effective means of teaching personal hygiene skills.

Adolescent↗

Differences between normal and developmentally disabled children in a first dental visit.

Twenty-eight three- and four-year-old normal children participated in a study where they were exposed to a tape-slide series before a first dental examination. The audiovisual product gives an explanation about a first examination, the children having no previous dental experience. The purposes of the study were to evaluate the behavior modification that took place and to see whether differences could be found with the results of the same study performed four years before, with developmentally disabled children. The results obtained with normal children were the opposite of those obtained with special children. The normal population subjected to the audiovisual technique behaved better and had a lower heart rate throughout the appointment.

Audiovisual Aids↗

Identification of developmental disabilities and health problems among individuals under child protective services.

Although a relation between child abuse and developmental disabilities has been established, information about the health and developmental status of children referred to child protective services is not adequately obtained. Case records of 150 children identified to child protective services were reviewed in order to determine the availability of health and developmental information. A screening protocol was developed for the purpose of reviewing case records that has potential for use by child protective services workers.

Adolescent↗

Blepharophimosis: a causally heterogeneous malformation frequently associated with developmental disabilities.

We report on 22 individuals referred for genetic evaluation because of blepharophimosis. Fourteen of these patients had the blepharophimosis syndrome: 5 familial and 9 sporadic. Mental retardation or developmental delay was seen in 8 of the 12 children in whom this could be assessed. Eight of 22 children had a malformation syndrome other than the blepharophimosis syndrome. All 8 of these children were mentally retarded or developmentally delayed. Two of these 8 had recognized disorders (branchio-oto-renal syndrome and a ring 4 chromosome); the remaining 6 had unrecognized malformation syndromes. Based on this information, it is suggested that children with blepharophimosis be evaluated carefully for underlying conditions and that they be observed for developmental disabilities because of the frequent association.

Blepharophimosis↗

Neurological examination of the preterm and full-term infant at risk for developmental disabilities using the Dubowitz Neurological Assessment.

The Dubowitz Neurological Assessment of the Preterm and Full-term Infant was used to evaluate infants at risk for developmental disabilities. Criteria for categorising the results of the Dubowitz Neurological Assessment were developed by documenting the findings on a group of relatively low risk infants managed in a NICU. The criteria, expressed as a number of deviant responses on items in the assessment, were used to test the concurrent and predictive validity. The Dubowitz Neurological Assessment was found to correlate with a perinatal risk rating and the findings on brain ultrasonography, indicating concurrent validity. Predictive validity was demonstrated by correlation with neurodevelopmental outcome and neurological status at 1 year corrected age. The sensitivity and specificity of the assessment were also used to develop a management protocol for graduates of the NICU.

Apgar Score↗

Communicating a diagnosis of developmental disability to parents: multiprofessional negotiation frameworks.

It is a hard task for professionals to give and parents to receive the bad news about a child's developmental disability. This study describes how findings about four preschool children, with difficulties suspected to lie within the autistic spectrum, were negotiated with parents by two multiprofessional groups, one in a Medical (Site M) and one in an Education setting (Site E). Each assessment was undertaken over half a day, the professionals jointly interacting with the child and family. All assessment discussions were audiotaped and each participant was interviewed after the assessment. Conversation analysis showed the activation of three major social-interaction frameworks: professionals at both sites applied a parent-friendly frame, but this was complemented by a hopeful-diagnostic-formulation frame at Site M, and a defocusing-of-bad-news frame at Site E.

Autistic Disorder↗

Reducing problem behavior during care-giving in families of preschool-aged children with developmental disabilities.

This study evaluated two variants of a behavioral parent training program known as Stepping Stones Triple P (SSTP) using 74 preschool-aged children with developmental disabilities. Families were randomly allocated to an enhanced parent training intervention that combined parenting skills and care-giving coping skills (SSTP-E), standard parent training intervention alone (SSTP-S) or waitlist control (WL) condition. At post-intervention, both programs were associated with lower levels of observed negative child behavior, reductions in the number of care-giving settings where children displayed problem behavior, and improved parental competence and satisfaction in the parenting role as compared with the waitlist condition. Gains attained at post-intervention were maintained at 1-year follow-up. Both interventions produced significant reductions in child problem behavior, with 67% of children in the SSTP-E and 77% of children in the SSTP-S showing clinically reliable change from pre-intervention to follow-up. Parents reported a high level of satisfaction with both interventions.

Adaptation, Psychological↗

More positive or less negative? Trends in research on adjustment of families rearing children with developmental disabilities.

We reviewed family adjustment research over a 20-year period to determine whether it reflected less negative and/or more positive conceptions of families rearing children with developmental disabilities. Two judges, unaware of the purpose of the study, independently rated 60 articles, 20 from each of 3 time periods: 1971-1975, 1983, and 1993. Results indicated that although negativity declined from the 1970s to 1983, there was no concomitant increase in positivity. In our conclusion we emphasize that the changes were real, but small, and that most investigators still write about family adjustment in a predominantly negative tone.

Child↗

The Colorado mental retardation and developmental disabilities research center.

The Colorado MRRC was one of the original MRRCs funded and has maintained its focus on genetic and nutritional causes of mental retardation and developmental disabilities. Significant discoveries of the center have included a number of metabolic disorders, including glutaric academia types I and II, electron transport flavoprotein (ETF) deficiency, ETF dehydrogenase deficiency, glycerol kinase deficiency, sphingolipidoses, genetic linkages in dyslexia, phonological deficits in dyslexia, and the importance of the trace mineral Zn in early development. Current research at the center is supported by program of projects grants on inborn errors of metabolism, Down syndrome (DS), autism, and dyslexia.

Academic Medical Centers↗

Juggling and struggling: a preliminary work-life study of mothers with adolescents who have developmental disabilities.

A focus group study was conducted to develop an understanding of the experiences of mothers who are trying to balance employment with caring for an adolescent with developmental disabilities. Mothers reported facing considerable difficulties balancing work and caregiving responsibilities because support services rapidly declined when their child reached adolescence. Service cuts were related to the fact that adolescents are expected to be able to care for themselves, despite the fact that for many adolescents with disabilities, this is not possible. The mothers also reported that the preponderance of the responsibility for arranging care for their children was theirs and was not shouldered by their partners. Policy implications are discussed.

Adaptation, Psychological↗

Home environments of developmentally disabled infants as a function of parent and infant characteristics.

Variables from three categories were inspected as correlates of HOME Inventory ratings for 43 severe perinatal risk or developmentally disabled infants at 8 to 9 months post-expected date of delivery. These variables were maternal perceptions of the infant's temperament, maternal self-reported mood, and interactional characteristics of the infant as rated by a home observer. Stepwise regression analysis of HOME total scores showed that infants who were viewed by their mothers as more active and by the observer as less irritable were particularly likely to experience more optimal developmental practices in the home. Significant predictors in regression equations for various of the HOME subscales were: maternal ratings of the infant's mood, approach, adaptability, and rhythmicity; maternal self-reported depression, tension, and confusion; and infant pleasure in physical contact. The finding that homes of fathers with high occupational status were rated lower on Maternal Involvement and Emotional and Verbal Responsivity of the Mother is inconsistent with results of studies of the homes of developmentally normal children.

Behavior↗

Analysis of orthodontic anomalies in mentally retarded developmentally disabled (MRDD) persons.

For this epidemiologic study, 458 individuals with mental retardation and developmental disability (MRDD), from 6 to 87 years old, from the Lower Hudson Valley region of New York, were evaluated for the occurrence of orthodontic anomalies. High occurrence of both anomalies of intermaxillary relation, as determined by Angle's classification, and the anomalies of occlusion were found in these individuals when compared with the general population. An increased incidence of both acquired (i.e., open bite) as well as hereditary (i.e., prognathia) orthodontic anomalies correlated with the severity of mental retardation. In addition, an increased incidence of Angle class II malocclusion was found in persons with cerebral palsy and autism, and an increase of Angle class III malocclusion in persons with autism and Down syndrome. Moreover, it was found that 74% of MRDD persons had definitive malocclusion, while only 37% of the US general population of comparable age has definitive malocclusion. High incidence of malocclusion in this population remained present into old age, mainly due to a lack of treatment and the need to employ non-conventional orthodontic treatment in this population.

Adolescent↗

Effects of subject- versus experimenter-selected reinforcers on the behavior of individuals with profound developmental disabilities.

Results from a number of studies have shown that individuals with profound developmental disabilities often show differential approach behavior to stimuli presented in a variety of formats, and that such behavior is a reasonably good predictor of reinforcement effects when these "preferred" stimuli are used subsequently in a contingent arrangement. Recent data suggest that reinforcement effects may be enhanced further by allowing individuals to select, just prior to training sessions, which (of several) preferred stimuli would be used as reinforcers, but whether this method is superior to one based on selection by a teacher or therapist has not been adequately addressed. We compared the effects of these two methods of reinforcer selection on rates of responding on a free-operant task, using stimuli previously identified as potential reinforcers. Results obtained with 4 subjects indicated little or no difference in reinforcement effects when stimuli were selected by subjects rather than experimenters. Implications of these results with respect to choice and its relation to reinforcement are discussed.

Adult↗

HIV prevention among people with developmental disabilities.

This investigation sought to determine the effect of HIV/AIDS on people with developmental disabilities. Inquiries about contributing factors and HIV prevention needs also were made. In this qualitative descriptive study, two focus groups were conducted with individuals from the target population, as well as service providers. Each focus group was held in a conference room of a community-based organization located in Philadelphia on a weekday evening. Sixteen adults participated in the focus groups. Seven were members of the target population, and 9 were services providers. Focused topics were developed to guide the group discussion. Participants identified several contributing factors and barriers associated with risk behavior and HIV risk in this population. Recommendations for HIV prevention needs and strategies also were generated. The results of this formative inquiry indicated there is a need for development of specific HIV intervention strategies for this vulnerable and often overlooked population. Clinical and research implications are proposed.

Acquired Immunodeficiency Syndrome↗

Families' perceptions of their resources for caring for children with developmental disabilities.

Factors related to families' perceptions of internal resources when raising children with developmental disabilities were examined. Families enrolled in a Cash Subsidy Program were surveyed about their resources, use of services, and helpfulness of social supports. Parents saw their basic resources for daily life as adequate. However, they reported that their time, discretionary money, and child-care resources were not adequate for caring for their children. Helpfulness of social supports, the children's characteristics, and income were related to perception of resource adequacy. Findings suggest that support services must be flexible in the types and amounts of services provided.

Adolescent↗