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Sexuality of children and adolescents with developmental disabilities.

Children and adolescents with developmental disabilities, like all children, are sexual persons. However, attention to their complex medical and functional issues often consumes time that might otherwise be invested in addressing the anatomic, physiologic, emotional, and social aspects of their developing sexuality. This report discusses issues of puberty, contraception, psychosexual development, sexual abuse, and sexuality education specific to children and adolescents with disabilities and their families. Pediatricians, in the context of the medical home, are encouraged to discuss issues of sexuality on a regular basis, ensure the privacy of each child and adolescent, promote self-care and social independence among persons with disabilities, advocate for appropriate sexuality education, and provide ongoing education for children and adolescents with developmental disabilities and their families.

Adolescent↗

American Academy of Pediatrics: Committee on Child Abuse and Neglect and Committee on Children With Disabilities. Assessment of maltreatment of children with disabilities.

Widespread efforts are continuously being made to increase awareness and provide education to pediatricians regarding risk factors of child abuse and neglect. The purpose of this statement is to ensure that children with disabilities are recognized as a population that is also at risk for maltreatment. The need for early recognition and intervention of child abuse and neglect in this population, as well as the ways that a medical home can facilitate the prevention and early detection of child maltreatment, should be acknowledged.

Child↗

A joint health and social services initiative for children with disabilities.

The children's disability team in Cambridge provides an integrated health and social care service for children with complex learning and physical disabilities and their families. The team uses a multidisciplinary and multi-agency teamwork approach to care provision. The effectiveness of the team was evaluated using a cooperative review of its functions, in which all the 'subjects' were active participants in defining and delivering the evaluation. This was combined with individual questionnaires regarding the team's perceived strengths and weaknesses. Particular implications for training and supervision emerged from the findings. This article discusses the ways in which the team has successfully refined its practice of collaborative working in a developmental way between 1992-1998.

Child↗

Perceptions of teachers and parents on the cognitive functioning of children with severe mental disability and children with congenital deafblindness.

This article reports Phase I results of a questionnaire study on the perceptions of US teachers and parents on the cognitive functioning of children with severe mental disability and children with congenital deafblindness, ages 4-12 years. Teachers were more likely than parents to report emerging skills and to provide examples of how the skill was being taught. Teachers and parents of children with severe mental disability had different perceptions about how children demonstrated understanding of cause-effect, object permanence, memory, incidental cues, reasoning and creativity. Teachers and parents of children with congenital deafblindness differed in their perceptions of how children demonstrate understanding of incidental cues and exhibit reasoning. Both teachers and parents expressed concern about whether choice making was meaningful. Novelty was reported to be a motivating factor for children with severe mental disability, while familiarity was cited as motivating for children with congenital deafblindness. Teachers and parents of all children cited consistency, routine and repetition as important to learning.

Child↗

Efficacy of bosentan in treatment of unresponsive cutaneous ulceration in disabling pansclerotic morphea in children.

Disabling pansclerotic morphea (PM) of childhood is a rare and debilitating variant of localized scleroderma. We describe a 4-year-old girl with rapid progression of deep cutaneous fibrosis extending into the muscle fascia with disabling joint contractures of the hips, knees, ankles, and fingers and recalcitrant ischemic ulcerations. Within the first months of therapy with dual oral endothelin receptor antagonist bosentan (31.25 mg qd for 4 weeks [DOSAGE ERROR CORRECTED], then 31.25 mg bid) limb ulcers improved, with resolution of the widespread sclerotic skin lesions. Joint mobility improved, and a substantial decrease of skin thickness was noted. No side effects were noted. In the context of other data in scleroderma, bosentan may be a promising option in the treatment of PM.

Antihypertensive Agents↗

Sibling interaction of children with learning disabilities: a comparison of autism and Down's syndrome.

Two potentially contrasting hypotheses can be generated about sibling interactions involving a child with Down's syndrome or autism. Research on siblings would predict that learning disabled children adopt responsive roles. Studies of children with autism would predict impoverished interactions. Home observations were conducted on 30 sibling pairs involving children with autism or Down's syndrome. Both hypotheses were partially supported. All learning disabled children engaged in frequent bouts of interaction, usually directed by their sibling. While children with autism engaged in fewer bouts and imitated less, they did reciprocate their siblings' initiations. Sibling encounters provide a unique opportunity for such children to learn about social relationships.

Autistic Disorder↗

Cognitive development and cerebral lateralization in children with learning disabilities.

Basic assumptions related to research with learning disabled children are critically examined as they pertain to conceptual models of the relationship between cerebral lateralization and cognitive development. Based on this review, it seems that some assumptions regarding the relationship between cerebral lateralization and cognitive development among learning disabled children are without strong empirical support. Consequently, researchers in this area need to be particularly aware of underlying assumptions related to their research and may need to discuss their results from a more current perspective.

Attention↗

A randomized controlled trial of a 'buddy' programme to improve children's attitudes toward the disabled.

Children's attitudes to their disabled peers exert a powerful influence on the process of integration of the disabled. This study reports a randomized controlled trial of a 'buddy' interaction programme in which gender-matched able-bodied and disabled schoolmates were paired over a three-month period. 43 per cent of the buddy children had a significant improvement in attitudes, compared with 18 per cent of the controls. Buddies also got to know significantly more disabled schoolmates than did the control children. There was a secondary effect on parents, with both fathers and mothers of buddy children having significant improvements in attitude. The implications of these results for the social success of disabled children are discussed.

Adolescent↗

PICUBASICS: an on-line resource for the diagnosis and management of acute illness in children with chronic conditions and disabilities.

Children with disabilities and chronic conditions are more likely than their healthy peers to be admitted to emergency rooms, to be hospitalized, and to require pediatric intensive care. Although many of these admissions are attributable to disease burden, a significant percentage are unscheduled stays for an acute illness that is directly related to a known condition. Such admissions are foreseeable, and therefore may be avoidable. An understanding of typical patterns of events that lead to acute illness in children with chronic conditions might suggest strategies to prevent these illnesses or to minimize the severity of unpreventable illnesses when they occur. When viewed as a marker for avoidable morbidity, an "unanticipated" hospitalization of a child with a chronic condition or disability thus provides an important opportunity for health care quality improvement at the community level.

Acute Disease↗

Survival rates among children with severe neurologic disabilities.

BACKGROUND: This study was done to determine survival rates in subpopulations of severely neurologically disabled children who reside in pediatric skilled nursing facilities and to compare these survival rates with those in previously published studies. METHODS: Data were collected at three pediatric skilled nursing facilities over the 1986 to 1996 decade. The total study population numbered 447. We studied in detail six groups of the most severely disabled children and correlated their survival rates with clinical parameters and the presence of other significant diseases. RESULTS: The survival rates in our six groups of severely disabled children were significantly better than those previously reported. In group 1, our 8-year survival rate was 66%, as compared with 5% in the previous study. In group 2, our 8-year survival rate was 89%, versus 22% in the previous study. We obtained better survival rates in all six groups studied, irrespective of the analysis including children less than 1 year old, between 1 year and 15 years old, or more than 15 years old. The most significant determinant for reduced survival was the presence of other significant diseases. Those with other significant diseases had a 10-year survival rate of 45%, whereas those who were relatively healthy had a survival rate of 90%. Patients who received gastrostomy tube feedings had a better 10-year survival rate than those fed by nasogastric tube (78% vs 41%). This difference was independent of the presence of other significant medical diseases. CONCLUSIONS: Our results show substantially better survival rates than those previously reported. These improved results are most likely related to much more intense medical management of severely disabled children in skilled nursing facilities than at home or in other residential settings. Our study also showed a significantly better survival rate for those fed by gastrostomy tube as compared with nasogastric tube.

Adolescent↗

Effect of gastrostomy on growth in children with neurodevelopmental disabilities.

Chronic malnutrition and growth failure are frequent consequences of feeding difficulties in neurodevelopmentally disabled children. Gastrostomy feeding has been used successfully to alleviate chronic malnutrition as well as distress and frustration associated with feeding. Unfortunately, caregivers are often resistant to gastrostomy placement. In order to determine the impact of gastrostomies in 20 children with neurodevelopmental disability (NDD), a questionnaire was used to collect caregivers' perceptions both before and after gastrostomy. The questionnaire assessed caregivers' retrospective perceptions of quality of life, feeding difficulties, and the burdens and benefits of gastrostomies. To determine impact on growth, height and weight were measured once before and three times after gastrostomy (at six, 12, and 24 months). The number of times a child was fed and the amount of time spent feeding decreased significantly following gastrostomy (p<0.001 and p<0.05, respectively). Growth for all children improved following gastrostomy (p<0.001). Pre-gastrostomy problems improved significantly following gastrostomy, as did caregivers' perceptions of quality of life for both themselves and their child (p<0.001). These results indicate that gastrostomy has a positive impact on growth for neurodevelopmentally disabled children, and on quality of life for both children and caregivers. Caregivers may find these results encouraging if they are faced with a decision about gastrostomy placement for their child.

Adolescent↗

Fruitlax: management of constipation in children with disabilities.

Seven children, with a variety of disabilities, who had experienced chronic constipation, participated in a study of the use of Fruitlax, a natural laxative. Using an AB single-subject design, data were collected for each child for a baseline period A (2 weeks) and for an intervention period B (minimum of 3 weeks), which included the addition of Fruitlax to the subjects' diets. Whereas each child experienced some change in bowel pattern (consistency, effort required to have a bowel movement, color, amount, frequency, and number of bowel movements per day), the particular change was different for each child. Fruitlax does appear to be a useful natural laxative for some children; however, additional research with a larger sample is required. The Glenrose Stool Consistency Tool was developed for use in this study. Further work is needed in the use of the tool by clients, their families, and health care workers.

Child↗

Emotional responsivity in children with autism, children with other developmental disabilities, and children with typical development.

Twenty six children with autism, 24 children with developmental disabilities, and 15 typically developing children participated in tasks in which an adult displayed emotions. Child focus of attention, change in facial tone (i.e., hedonic tone), and latency to changes in tone were measured and summary scores of emotional contagion were created. Group differences existed in the ratio of episodes that resulted in emotional contagion. Correlations existed between measures of emotional contagion, measures of joint attention, and indices of severity of autism. Children with autism demonstrated muted changes in affect, but these responses occurred much less frequently than in comparison groups. The findings suggest directions for early identification and early treatment of autism.

Affect↗

World statistics on disabled persons.

This report presents summarizing statistical data on the present situation of disabled people in the world. Besides the total number of the disabled, national estimates are given. Special reports are dedicated to some groups of disabled people, like disabled children, disabled women, families of disabled people, the economic situation of such families, and the mentally disabled. In addition the situation in developed and developing countries is described. Starting from actual trends the tasks and objectives of research are reported.

Africa↗

Early identification and treatment necessary to prevent malnutrition in children and adolescents with severe disabilities.

Children with severe developmental disabilities frequently have nutrition and growth problems that range from moderate to severe. Because of notable continuing medical concerns and lowered growth expectations, parents and physicians may fail to recognize gradual deterioration in nutritional status before severe medical complications occur. The two cases reported in this article illustrate the need for early identification and treatment to prevent the development of notable morbidity secondary to malnutrition. Children and adolescents who have growth parameters consistently below age norms require assessment and monitoring by a registered dietitian to detect feeding problems and intake changes and to provide early intervention to help prevent negative consequences (eg, dehydration, protein-energy malnutrition, decubitus ulcers, increased rate and duration of infections, and altered bowel motility). An initial assessment should consist of measurement of length or height, weight, triceps, and subcapsular skinfolds; dietary and feeding history and a review of medical history; and biochemical testing as indicated by the medical and dietary histories. Monitoring frequency, which is determined by age, severity of condition, and response to treatment, may vary from weekly to bimonthly.

Adolescent↗

Regulatory and ethical principles in research involving children and individuals with developmental disabilities.

Children and individuals with developmental disabilities (DD) compared to typical participants are disadvantaged not only by virtue of being vulnerable to risks inherent in research participation but also by the higher likelihood of exclusion from research altogether. Current regulatory and ethical guidelines although necessary for their protection do not sufficiently ensure fair distributive justice. Yet, in view of disproportionately higher burdens of co-occurring physical and mental disorders in individuals with DD, they are better positioned to benefit from research by equitable participation. Greater elucidation of this ethical dilemma is called for by researchers, institutional review boards, and funding agencies to urgently redress the imbalance. This article discusses many of the regulatory principles to ensure better research participation of children and individuals with DD: human rights, validity, distributive justice, beneficence/nonmaleficence, and autonomy.

Adult↗

The effects of memory trace strength on eyewitness recall in children with and without intellectual disabilities.

Children with mild moderate intellectual disabilities (ID) were compared with typically developing peers of the same chronological age (CA) on an eyewitness memory task in which memory trace strength was manipulated to examine whether increased memory trace strength would benefit those with ID more than those without ID. No evidence was found for this claim or for the notion that different mechanisms are implicated in memory processes for children with ID versus CA controls. Fuzzy-trace theory was also used to contrast question types that probed verbatim memory versus gist memory. Manipulations of trace strength, when used with immediate recall (to reduce the impact of decay), were predicted to improve verbatim memory more than gist memory. The results broadly supported the predictions. Performance was not improved in the stronger trace strength condition on measures of recall that tapped gist memory (e.g., open-ended recall), whereas performance was significantly better in the stronger trace strength condition on two of the three measures of recall that tapped verbatim memory (i.e., closed misleading questions, open-ended specific questions). Differences in performance between the groups were quite marked on several question types, supporting previous findings that those with ID have certain vulnerabilities as potential witnesses compared with peers of the same CA.

Adolescent↗