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PubMed2006

Effects of an education programme on family participation in the rehabilitation of children with developmental disability.

The growth and development of children with developmental disability depend very much on the parents. The present study was designed to examine whether family-focused education could enhance parental skills, knowledge and competency. The enhancement would in turn result in greater parental participation in the rehabilitation process of these children. The parental needs of Chinese parents were reviewed for the formulation of the Family-Focused Education Programme, which was then implemented, and evaluated using a pre-test/post-test control group design. Forty parents were invited to participate in the study using a convenience sampling technique. The mean scores of these variables were in the direction of increasing after the programme, though repeated measures ANOVA did not indicate any statistically significant changes in parenting knowledge, attitude and stress. It was apparent that the Family-Focused Education Programme enhanced parental competence. Undoubtedly, the family-focused approach is crucial for enhancing parenting competency, and education is fundamental to enabling parents.

Adult↗

PubMed1999

Amnestic syndrome presenting as malingering in a man with developmental disability.

The authors report an unusual presentation of amnestic syndrome mislabeled as malingering in a man with mild developmental disability. The case highlights the challenges to medical personnel in treating persons who visit emergency rooms often, particularly individuals with mental retardation. Diagnostic overshadowing was a primary factor in the failure to diagnose amnestic syndrome. Overshadowing occurs when a patient's problematic behaviors are attributed to mental retardation, and no attempt is made to search for the root causes of the problem. The case also highlights the need for emergency room personnel to maintain links with agencies involved in the day-to-day care of persons with developmental disabilities.

Amnesia↗

PubMed2006

Inclusion of people with mental retardation and other developmental disabilities in communities of faith.

Our focus in this paper is on efforts to include persons with developmental disabilities in faith communities. We provide a review of the relevant literature on religious participation and faith communities for persons with disabilities and blend the limited data available on these topics with the perspectives of individuals whose efforts focus on these concerns. Topics explored are the implications of being part of the faith community in terms of its impact on quality of life, the barriers to inclusion in such communities, strategies for overcoming these barriers, and special considerations for adults with mental retardation or other developmental disabilities. Discussion of the implications for enhancing inclusion in faith communities is provided.

Adolescent↗

PubMed1993

Survey of community adjustment of previously institutionalized developmentally disabled persons.

A survey was conducted of the community adjustment of 108 developmentally disabled (mentally retarded) persons who had spent at least three years in an institution in southeastern Ontario. On average, they had resided 3.5 years in the community, were 40 years of age, with a mental age of five years and a median IQ of 41, and most had one or more moderate to severe physical disabilities. During their most recent year living in the community it was found that their daily living skills remained unchanged compared with their skill level in the year prior to community placement. As well, the community staff rated them as average in level of performance and amount of supervision required compared with others of similar ability. About one third were found to have a moderate to severe behavioural/psychiatric problem with aggressive disruptive behaviour being most frequent. Of the two-thirds capable of being interviewed, over three-quarters expressed satisfaction with their present living, work, education and recreation environment and had no desire to return to the institution. Most had few if any meaningful relationships with non developmentally disabled persons other than caregivers. Support agency staff and psychiatric consultants identified additional service needs for those with behavioural/psychiatric problems who may be placed in the community.

Activities of Daily Living↗

PubMed2006

The impact of time aids on independence and autonomy in adults with developmental disabilities.

The aim of this study was to describe how people with developmental disabilities experienced the use of time aids one year after their introduction by an occupational therapist. Data were obtained through semi-structured interviews. The analysis was performed using a phenomenographic qualitative approach. The results showed that independence and autonomy should be considered as two separate phenomena. Increased independence did not always lead to increased autonomy or vice versa. Four different relationships between these two phenomena were found. They all illustrate the different priorities of the participants and different levels of independence and autonomy. Concerning the usability of time aids, the occupational therapist has to recognize the importance of having frequent communication with the client to understand the phenomena that may affect the use of the aids. The occupational therapist should always try to involve both the client and significant support persons while introducing time aids. Future research in time aids with clients with developmental disabilities could involve multiple interviews with participants combined with participant observations and interviews.

Adult↗

PubMed1992

Hepatitis C virus seroprevalence in the developmentally disabled.

BACKGROUND: Hepatitis C virus (HCV) is the principal cause of nonenteric non-A, non-B hepatitis worldwide. While it has been well documented that people with developmental disabilities are at an increased risk for infections with hepatitis B virus, little is known of the prevalence of HCV infection among this population. METHODS: Serum samples obtained from 113 evaluable outpatients with developmental disabilities at one center in suburban New York City (NY) were tested for antibodies to HCV and hepatitis B core antibody. RESULTS: None of the 113 samples tested positive for HCV antibody by enzyme-linked immunosorbent assay, whereas 24 (21%) showed serologic evidence of past hepatitis B virus infection on the basis of hepatitis B core antibody positivity. Three (2.7%) were also positive for hepatitis B surface antigen. CONCLUSIONS: In contrast to hepatitis B virus, HCV infection is uncommon among outpatients with developmental disabilities in suburban New York City. Further testing for HCV is indicated to determine if these results can be generalized to individuals within institutions, or to individuals in other geographic locations.

Adult↗

PubMed2007

Predictors of care-giver stress in families of preschool-aged children with developmental disabilities.

BACKGROUND: This study examined the predictors, mediators and moderators of parent stress in families of preschool-aged children with developmental disability. METHOD: One hundred and five mothers of preschool-aged children with developmental disability completed assessment measures addressing the key variables. RESULTS: Analyses demonstrated that the difficulty parents experienced in completing specific care- giving tasks, behaviour problems during these care-giving tasks, and level of child disability, respectively, were significant predictors of level of parent stress. In addition, parents' cognitive appraisal of care-giving responsibilities had a mediating effect on the relationship between the child's level of disability and parent stress. Mothers' level of social support had a moderating effect on the relationship between key independent variables and level of parent stress. CONCLUSIONS: Difficulty of care-giving tasks, difficult child behaviour during care-giving tasks, and level of child disability are the primary factors which contribute to parent stress. Implications of these findings for future research and clinical practice are outlined.

Adult↗

PubMedDate not supplied

Praxis skills in young children with Down syndrome, other developmental disabilities, and typically developing children.

This study explored whether young children with Down syndrome show praxis deficits that impact activities of daily living, and whether these deficits are specific to Down syndrome. We compared the performance of young children with Down syndrome, a mental age-matched group of children with developmental disabilities of mixed or unknown etiologies, and a group of typically developing infants and toddlers on praxis tasks and overall adaptive behavior (Vineland Adaptive Behavior Scales). Children with Down syndrome showed poorer overall motor functioning than the developmental disabilities comparison group as measured by the Vineland Adaptive Behavior Scales, F(2, 47) = 5.24, p < .01 (using one-way analysis of variance [ANOVA]). A one-way multivariate analysis of variance also showed that children with Down syndrome performed significantly worse overall than the developmental disabilities comparison group on a battery of praxis tasks, F(7, 18) = 2.95, p < .05, and a series of object retrieval tasks, F(7, 18) = 2.95, p < .05, suggesting a deficit in praxis that is specific to Down syndrome. Children with Down syndrome elicited significantly more help than both comparison groups during object retrieval trials, F(2, 48) = 4.94, p < .01 (using one-way ANOVA). When chronological age was partialled out, a strong relationship was observed between praxis and adaptive functioning in Down syndrome, r(8) = .69, p < .05. These findings suggest that young children with Down syndrome may need targeted interventions that focus on both praxis skills and motivational orientation.

Child↗

PubMed1992

Teaching child-care skills to mothers with developmental disabilities.

The present study identified and remediated child-care skill deficits in parents with developmental disabilities to reduce their risk of child neglect. Eleven mothers with developmental disabilities who were considered by social service and child welfare agencies to be providing neglectful child care were found in baseline to have several important child-care skill deficits (e.g., bathing, diaper rash treatment, cleaning baby bottles) compared to nonhandicapped mothers. Parent training (consisting of verbal instructions, pictorial manuals, modeling, feedback, and reinforcement) resulted in rapid acquisition and maintenance of child-care skills in all mothers. Mean percentage correct scores increased from 58% in baseline to 90% in training and 91% in follow-up (M = 31 weeks). The latter two scores compare favorably to the mean score (87%) of 20 nonhandicapped mothers on the same skills. Where observable, parent training was associated with corresponding benefits to the children (e.g., elimination of diaper rash and cradle cap, increased weight gain, successful toilet training). These results indicate that parent training may be a viable option to the removal of the child from the home when parenting skill deficits place the child's well-being in jeopardy.

Adult↗

PubMed2005

Quality of life dimensions for adults with developmental disabilities: a comparative study.

The quality of life construct has gained prominent attention in human services over the last 20 years. We investigated whether quality of life differences exist between adults with developmental disabilities and the general population. Differences were found in scales measuring well-being and decision-making as well as other more specific variables. The two groups also differed in overall quality of life; those with developmental disabilities had lower quality of life. A logistic regression model comprised of the life dimensions differentiated between the groups with over 90% accuracy. Overall results of this static group comparison indicate that adults with developmental disabilities are at a significant disadvantage with regard to quality of life in comparison with the general population.

Activities of Daily Living↗

PubMed1999

[A study on incidence of developmental disabilities in Higashi-Osaka City, Japan, 1988-1992].

A population based statistical analysis was performed of the incidence of developmental disabilities in Higashi-Osaka, a city in Osaka Prefecture with a population of about 500,000. The number of live births during 1988-1992 was 24,980, of whom those with cerebral palsy (CP), severe motor and intellectual disability syndrome (SMIDS), infantile autism, mental retardation (MR) and Down syndrome numbered 30, 21, 26, 268 and 25, respectively. And the respective incidence rates per 1,000 were 1.20, 0.84, 1.04, 10.7 and 1.0. For CP, the percentage of premature children was 63%, higher than in previous reports. Extremely low-birth-weight premature children (< 999 g birth weight) were especially notable at 20% of the CP total. For SMIDS, it is more important to understand the significance of medical care to support sufferers' social lives. High functional autistic children could not be evaluated at our center, though autism accounted for 8.6% of mental retardation. The medical functions of community institutions enable them to perform continuous, population based study of the incidence and situation of developmental disabilities.

Community Health Services↗

PubMed1989

The developmentally disabled elderly: concerns of service providers.

We examined the availability of services for the developmentally disabled elderly and the concerns expressed by the service provider. We compared agencies which traditionally served individuals with developmental disabilities versus those serving the elderly populations. Although both types of agencies recognized the need for services, concern was raised as to who would provide them and how the two groups would blend.

Aged↗

PubMed1996

Measurement of growth in children with developmental disabilities.

The clinical assessment of growth is a challenging, but essential, aspect of managing the health care of children with developmental disabilities. However, with standard equipment, modest training and some patience, almost all children can be measured reliably. Once reliable measurements are obtained, the interpretation or 'clinical meaning' of the measurements depends on their comparison with reference data from normal populations or, when available, with condition-specific reference data. More research is needed to improve our understanding of the clinical meaning of obtained measurements. The range of normal growth for some children with disabilities, particularly CP, remains to be defined. Research in the next ten years will, hopefully, lead to the development of growth charts for children with CP, and perhaps children with other conditions, which will facilitate the clinical interpretation of growth data and lead to improved management of health care for children with developmental disabilities.

Adolescent↗

PubMed1999

Twelve years later: adjustment in families who adopted children with developmental disabilities.

In most studies positive outcomes for families who have adopted children with developmental disabilities have been described. In this previous research, however, investigators have examined primarily short-term adjustment. In contrast, in the current longitudinal investigation 9 years after an initial interview, we assessed the adjustment and functioning of families who have adopted children with developmental disabilities. Results indicate that nearly 12 years after their adoptions, families remaining in the study reported generally positive outcomes and good adjustment to their adopted children. Whereas there were changes in these families, especially as the children approached adolescence and early adulthood, these changes were perceived as potential sources of reward as well as sources of stress.

Adaptation, Psychological↗

PubMed2000

Long-term care for people with developmental disabilities: a critical analysis.

This article explores how the trends toward long-term community care affecting people with developmental disabilities developed. Appropriateness of care and quality of life issues are discussed. The article also reviews the development of long-term care for frail and disabled elderly people and explores the arguments for a continuum of care that have developed in this area. The authors conclude that future policies with respect to meeting long-term care needs for people with developmental disabilities must be addressed flexibly on an individual basis, related to individual needs, and must provide a continuum of care services.

Aged↗

PubMed2001

Diagnosis and treatment of feeding disorders in children with developmental disabilities.

OBJECTIVES: To determine the results of diagnostic evaluation and the effects of nutritional intervention on energy consumption, weight gain, growth, and clinical status of children with neurodevelopmental disabilities and suspected feeding disorders. METHODS: We studied 79 children with moderate to severe motor or cognitive dysfunction (male:female, 38:41; age, 5.8 +/- 3.7 years) who were referred for diagnosis and treatment of feeding or nutritional problems. Initial assessments included a 3-day calorie intake record, videofluoroscopic swallowing study (VFSS), 24-hour intraesophageal pH monitoring, milk scintigraphy, and esophagogastroduodenoscopy. RESULTS: These studies demonstrated gastroesophageal reflux (GER) with or without aspiration in 44 of 79 patients (56%), oropharyngeal dysphagia in 21 (27%), and aversive feeding behaviors in 14 (18%). Diagnosis-specific approaches included medical GER therapy in 20 patients (25%), fundoplication plus gastrostomy tube (GT) in 18 (23%), oral supplements in 17 (22%), feeding therapy only in 14 (18%), and GT only in 10 (13%). After 24.6 +/- 3.0 months, relative calorie intake, expressed as intake (kcal/d)/recommended daily allowance (RDA, kcal/d), improved significantly (initial:final = 0.78 +/- 0.36:1.23 +/- 0.27). The z scores increased significantly for both weight (initial:final = -2.80 +/- 1.33:-0.81 +/- 0.69) and height (-3.14 +/- 0.98:-2.00 +/- 0.67). Improved subcutaneous tissue stores were demonstrated by increased thickness of both subscapular skinfolds (change = 71% +/- 26%) and triceps skinfolds (38% +/- 17%). After nutritional intervention, the acute care hospitalization rate, compared with the 2-year period before intervention, decreased from 0.4 +/- 0.18 to 0.15 +/- 0.06 admissions per patient-year and included only 3 admissions (0.02 per patient-year) related to feeding problems. CONCLUSIONS: In children with developmental disabilities, diagnosis-specific treatment of feeding disorders results in significantly improved energy consumption and nutritional status. These data also indicate that decreased morbidity (reflected by a lower acute care hospitalization rate) may be related, at least in part, to successful management of feeding problems. Our results emphasize the importance of a structured approach to these problems, and we propose a diagnostic and treatment algorithm for children with developmental disabilities and suspected feeding disorders.children, developmental disabilities, fundoplication, gastroesophageal reflux, gastrostomy, hospitalization, nutrition.

Adolescent↗

PubMed2006

The impact of augmentative and alternative communication intervention on the speech production of individuals with developmental disabilities: a research review.

PURPOSE: This article presents the results of a meta-analysis to determine the effect of augmentative and alternative communication (AAC) on the speech production of individuals with developmental disabilities. METHOD: A comprehensive search of the literature published between 1975 and 2003, which included data on speech production before, during, and after AAC intervention, was conducted using a combination of electronic and hand searches. RESULTS: The review identified 23 studies, involving 67 individuals. Seventeen of these studies did not establish experimental control, thereby limiting the certainty of evidence about speech outcomes. The remaining 6 studies, involving 27 cases, had sufficient methodological rigor for the "best evidence analysis" (cf. >R. E. Slavin, 1986). Most of the participants (aged 2-60 years) had mental retardation or autism; the AAC interventions involved instruction in manual signs or nonelectronic aided systems. None of the 27 cases demonstrated decreases in speech production as a result of AAC intervention, 11% showed no change, and the majority (89%) demonstrated gains in speech. For the most part, the gains observed were modest, but these data may underestimate the effect of AAC intervention on speech production because there were ceiling effects. CONCLUSIONS: Future research is needed to better delineate the relationship between AAC intervention and speech production across a wider range of participants and AAC interventions.

Adolescent↗

PubMed1999

Quality of health care for people with developmental disabilities: the challenge of managed care.

Health care quality issues for people with developmental disabilities under managed care were explored. Health-related quality was defined in terms of four domains: structure, process, outcome, and satisfaction. Three general problems in the assessment of health care quality were identified: lack of quality measures, patient response problems, and lack of system elements. Selected current measurement systems were described in relation to their use for people with developmental disabilities. An approach to developing quality measures was outlined using Healthy People 2000, Health Plan Employer Data Information Set, and clinical practice issues. The movement toward quality improvement was examined and recommendations presented for steps in developing and measuring health care quality.

Forecasting↗