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PubMed1999

Using self-instructional pictorial manuals to teach child-care skills to mothers with intellectual disabilities.

Children of parents with intellectual disabilities (i.e., IQs less than 80, labeled as having mental retardation) are at risk for neglect due to inadequate parenting abilities. Previous studies have shown that these parents are responsive to parent-training packages consisting of instructions, pictorial cues, modeling, feedback, and reinforcement. This study evaluated the effectiveness of self-learning pictorial-parenting manuals in teaching basic child-care skills (diapering, treating diaper rash, bathing, safety) to parents with intellectual disabilities who are monitored by child protection agencies. The manuals alone increased child-care skills (to levels seen in parents without disabilities) in 9 out of the 10 mothers in the study and in 12 of 13 child-care skills. The remaining skill was acquired with the full training package. Follow-up indicated that the acquired skills were maintained for up to 3 years. Mean correct performance with the manual was positively correlated with the trainer's rating of the mother's reading level and acceptance of the manual when the mother was first given the manual. Consumer satisfaction ratings of the manuals were high. These results indicate that many parents with intellectual disabilities may improve their child-care skills without intensive training and that self-instruction may be an easily disseminable and cost-effective way of reducing the risk of child neglect due to parenting skill deficiencies.

Child Abuse↗

PubMed2004

Disposable pull-ups versus disposable nappies for children with a disability.

Most children are expected to be dry by the age of three years (Lukeman, 1997). However, children with physical and/or learning disabilities may have difficulty achieving continence and will have an ongoing need for absorbent products. Historically these were disposable nappies. In recent years, the disposable pull-up style pad (Fig 1) has proved popular as an alternative design.

Child↗

PubMed1999

Chronic sorrow: the experience of parents with children who are developmentally disabled.

1. Adaptation mechanisms differ between mothers and fathers of developmentally disabled children. 2. Mothers' emotions radiate into chronic sorrow while fathers' reactions move toward resignation. 3. Patterns of grief and sadness reemerge and are most often precipitated by a health care crisis in women and comparison with social norms in fathers.

Adaptation, Psychological↗

PubMed2006

Using participatory rural appraisal (PRA) in the identification of children with disabilities in rural Kilifi, Kenya.

INTRODUCTION: Cross-sectional surveys have been used widely for identifying children with disabilities, but they have several disadvantages. The surveys concentrate on identifying impairments and do not encourage the participation and ownership of the community. Participatory rural appraisal (PRA) provides a cost-effective and efficient method that reflects the local perceptions of disability and involves local people. These factors are important for sustainability in resource-poor countries. PURPOSE: To evaluate the application of PRA to identifying children with disabilities in a rural setting. METHODS: PRA was used to identify children with disabilities in two rural sub-locations in Kilifi, Kenya. Data were collected through 12 focus group discussions and 12 social mapping activities. A purposive convenience sample of teachers, village leaders and women groups participated in the PRA. The perceptions of disability were established before identification of the children. The categories of identification were based on these local perceptions. The qualitative data were analyzed thematically and validation was performed through triangulation. RESULTS: Disability was perceived locally as the existence of impairments, activity limitations and participation restrictions. Disabilities were associated with traditional beliefs including witchcraft, evil spirits and punishments from God. In some cases these categories were mutually exclusive and in others they were concurrent. Children who had lost their parents and were not being cared for by relatives (disadvantaged orphans) were also perceived as disabled children by teachers and local women, but not by community leaders. CONCLUSION: The results suggest that PRA is an efficient and cost-effective method of identifying children with disabilities according to local perceptions, and it may be useful in community-based rehabilitation as an alternative to surveys.

Adolescent↗

PubMed2005

[Actual condition survey on inclusive child day-care--a questionnaire survey of child day-care facilities in K city].

The purpose of this questionnaire survey is to gather information on actual conditions of inclusive child day-care in K City in order to qualify what support we can provide as part of the community. The questionnaire was sent to 148 child-care facilities (day nurseries) in date, of which 116 provided sufficient data for analysis. Of these 116 facilities, 104 (89.7%) accepted children with disabilities, while 12 (10.3%) did not. The number of disabled children accepted by the 104 facilities over a 2.5-year period was 275. Mental retardation (including children with multiple disabilities) was the most common type of disability; autism, physical disability and cerebral palsy were also seen. Thus, nursery staff, whose training is largely geared toward education and child development, is faced with a particularly difficult task. What we envisage as one of our future roles is to train and provide nursing experts with a specialized knowledge of medical rehabilitation, day-to-day medical care, training and support of children with various types of disabilities. Such nurses could then be introduced to child day-care facilities to provide individualized child-care services, which would take into account all factors relating to the child's condition and developmental stage. The results of our survey also suggest that close coordination and partnership with specialized/related agencies and institutions should be pursued in order to both enrich the support systems of child day-care facilities and to enhance their inclusiveness.

Child↗

PubMed1994

Hypothermia in children with severe neurological disabilities.

Four severely disabled children who developed hypothermia during acute illness are described. A central defect in thermoregulation in the hypothalamus is likely, based on clinical observation and limited investigations, as well as similarities to sporadic cases reported in the literature. Disturbance of temperature regulation appears to be a rare complication of major brain injury in children, without necessarily occurring in association with pituitary dysfunction. It is of clinical importance because subnormal temperature may indicate severe sepsis.

Body Temperature Regulation↗

PubMed2003

Classification of communication disabilities in children: contribution of the International Classification on Functioning, Disability and Health.

Problems in communication serve as frequent markers of developmental delay and disability in childhood. Documentation of delayed or atypical receptive or expressive communication is one of the key diagnostic factors in the identification of children for intervention and support. This paper (1) reviews issues in classification and measurement of communication disabilities, (2) presents an overview of the development and publication of the WHO International Classification of Functioning, Disability and Health (ICF), and (3) identifies the implications of the ICF for children and youths with communication disabilities. As a conceptual framework, the ICF may be used productively to define the focus for different efforts to address children's language and communication difficulties. Impairments of a physical or mental nature can be covered in the Body Function and Body Structure components, complementing the information provided by the ICD-10 with descriptive documentation. The component of Activities, encompassing performance aspects of communication, lends itself to functional assessment and intervention in habilitation and education programs. The component of Participation provides an operational basis for policy initiatives focusing on social integration and community life Finally, the Environmental Factors component serves as a framework for identifying the nature and extent of access and opportunity for individuals and populations.

Activities of Daily Living↗

PubMedDate not supplied

Evaluation of the nutrition counselling component of a fitness programme for children with disabilities.

OBJECTIVE: To describe and evaluate the nutrition counselling component of a fitness programme for children with disabilities. METHODS: Twenty-eight children with disabilities, ages 6-14 years, participated in a 16-week comprehensive fitness programme consisting of twice weekly exercise sessions, nutrition counselling and physical activity promotion education sessions. Nutrition sessions consisted of three individual and two group sessions. Individual nutrition goals were developed for each child using 3-day food intake diaries and parent interview. Body Mass Index (BMI) and progress towards nutrition goals were documented. RESULTS: No significant BMI changes were recorded for the entire group (n=28) or a sub-group with a goal to decrease BMI (n=8). Most of the children made improvements in individual goals indicating improvements in healthy eating habits. This included eating the daily recommended amount of servings of each food group, trying new foods and limiting foods containing saturated and trans fats, sodium and sugar. CONCLUSION: Short-term changes were noted in eating habits and behaviours during the 16-week fitness programme, although the effects did not influence overall BMI during the 16-week programme. Children with disabilities are at nutritional risk, and long-term follow-up is needed to determine if initial changes in parent-reported child eating behaviours will impact long-term nutrition, BMI and overall health.

Adolescent↗

PubMed1997

Relation between very low birth weight and developmental delay among preschool children without disabilities.

The authors examined the relation between very low birth weight (VLBW: < 1,500 g) and possible developmental delay (DELAY) in the absence of frank developmental disability among young children. The prevalence of DELAY in a population-based cohort (Missouri resident births born from December 1989 through March 1991) of singleton VLBW children (n = 367) was compared with the prevalence of DELAY among both moderately low birth weight (MLBW: 1,500-2,499 g; n = 553) and normal birth weight (NBW: > or = 2,500 g; n = 555) singleton control children. DELAY was defined by nine measures of performance on the Denver Developmental Screening Test II at a median adjusted age of 15 months (range: 9-34 months). Subjects were asymptomatic for disabling conditions at developmental follow-up. Apparently well VLBW children were consistently at greater risk for both moderate and severe measures of DELAY and for DELAY across four functional areas than were either the MLBW (adjusted odds ratios: 1.4-2.7) or NBW children (adjusted odds ratios: 2.1-6.3). The greatest prevalence of DELAY tended to be among appropriate-for-gestational age VLBW children who were also the most premature. This study supports developmental follow-up of nondisabled VLBW children because of the significantly elevated risk for DELAY among apparently normal infants.

Alcohol Drinking↗

PubMed1978

Processing of visual contour orientation information in normal and disabled reading children.

Four experiments comparing the processing of contour orientation information in normal and specific reading disabled children were conducted. The first two experiments demonstrated that the reading disabled subjects had significantly longer visual information store durations than did the control subjects. In addition differences in visual information store durations for different orientations were found between the two groups. The final two experiments investigated processing of contour orientation information in the visual cortex. Results of Experiment IV suggested that the two groups differ in their processing of information in the visual cortex as well as in VIS. Because of the importance of feature detection in letter recognition, it is suggested that the present results may be important in understanding letter recognition is disabled readers.

Child↗

PubMed2002

Secondary conditions in children with disabilities: spina bifida as a case example.

This paper examines the concept of secondary conditions and its application in studies of childhood disability focusing on children with spina bifida as a representative group. The "International Classification of Functioning, Disability and Health" (World Health Organization, Geneva, 2001) provides a classification of body function/structure, activities, participation and the environment to document dimensions of human functioning in context. The ICF is of value in the study of secondary conditions in two ways: as a conceptual framework for defining impairments, activity limitations and participation restrictions, and the mediating role of the environment in their expression; and as a taxonomy for coding these dimensions of disability. The ICF can yield a profile of a child's difficulties, and documentation of environmental barriers experienced by that child. Research studies with children and adolescents with spina bifida reveal that physical and mental impairments and limitations in performing activities and participating in communal life are experienced as secondary conditions. The significance of secondary conditions is that they are preventable. Identifying the mechanisms associated with their manifestation is thus an important priority for the development of effective prevention programs.

Activities of Daily Living↗

PubMed1992

Service needs of children with disabilities in Jamaica.

We investigated the service needs of children attending a medical assessment as part of a two stage survey of 2 to 9-year-old children in mid and south Clarendon, Jamaica. Parents were asked about symptoms relating to six different disabilities: visual, hearing, speech, motor, cognitive and fits. Following medical and psychological assessment, a diagnosis of mild, moderate, severe or no disability was made. For children with disabilities, the frequencies of five possible types of intervention recommended by the physician were analysed and related to the prevalence of the six disabilities in the parish. To estimate the needs of the Jamaican child population the figures were extrapolated based on an estimate of 1 million children under the age of 15 years. These needs were then compared with places in existing services. Of the disabled children, 62% needed special education, 29.5% needed community-based services, 21% needed spectacles, 21% needed specialist referral, and 6% required medical treatment. Although the vast majority of these needs are not met, many more could be met in the community if existing health and education personnel are trained in basic techniques of screening and assessment.

Adolescent↗

PubMed1993

A comparison of the grip strength of children with myelomeningocele to that of children without disability.

The grip strengths of 108 children aged 6 to 19 years with myelomeningocele were measured and compared with previously published results for children without disability. The grip strengths of the 59 female subjects with myelomeningocele were significantly lower than those of the population without disability in all age groups except for the 12 to 15 years range. The 49 male subjects exhibited significantly lower grip strengths only up to age 12 years. Implications and recommendations for clinical treatment, effects of secondary neurological complications, limitations of the study, and topics of future research are discussed.

Adolescent↗

PubMed2004

Health services use and health care expenditures for children with disabilities.

OBJECTIVE: To examine health care utilization and expenditure patterns for children with disabilities. METHODS: Secondary data analysis was conducted of the 1999 and 2000 editions of the Medical Expenditure Panel Survey (MEPS), a nationally representative survey conducted in 5 rounds by household interview. Two years of MEPS data were combined in this analysis to improve the precision of estimates. Disability was defined by the presence of a limitation in age-appropriate social role activities, such as school or play, or receipt of specialized services through the early intervention or special education programs. The survey sample included 13,792 children younger than 18 years. The overall response rate was 65.5%. RESULTS: Our findings demonstrate that the 7.3% of US children with disabilities used many more services than their counterparts without disabilities in 1999-2000. The largest differences in utilization were for hospital days (464 vs 55 days per 1000), nonphysician professional visits (3.0 vs 0.6), and home health provider days (3.8 vs 0.04). As a result of their greater use, children with disabilities also had much higher health care expenditures (2669 dollars vs 676 dollars) and higher out-of-pocket expenditures (297 dollars vs 189 dollars). We also found that the distributions of total and out-of-pocket expenses were highly skewed, with a small fraction of the disabled population accounting for a large proportion of expenditures: the upper decile accounted for 65% of total health care expenses and 85% of all out-of-pocket expenses for the population with disabilities. Health insurance was found to convey significant protection against financially burdensome expenses. However, even after controlling for insurance status, low-income families experienced greater financial burdens than higher income families. CONCLUSIONS: The skewed distribution of out-of-pocket expenses found in this and earlier studies indicates that the financial burden of childhood disability continues to be shared unevenly by families. Low-income families are especially vulnerable to burdensome out-of-pocket expenses. Additional efforts are needed to protect these high-risk families.

Adolescent↗

PubMed2006

Psychosocial risks for disability in children with chronic back pain.

UNLABELLED: Psychosocial factors related to disability in adults with chronic back pain have been well studied, but little is known about factors associated with functional impairment in pediatric patients with chronic back pain. The purpose of this study was to examine whether 2 potential risk factors-use of catastrophizing as a coping technique and presence of a familial pain history-were associated with disability in pediatric back pain patients. Participants were 65 patients (ages 8-18) with chronic back pain seen at a multidisciplinary pain clinic. Patients completed measures of pain (visual analog scales), disability (Functional Disability Inventory), and catastrophizing (Internalizing/Catastrophizing subscale of the Pain Coping Questionnaire). Parents provided demographic information and familial pain history. Patients reported that chronic back pain caused disruptions in their daily functioning and they missed, on average, 2.5 days of school every month. Catastrophizing and familial chronic pain history both were significantly associated with greater disability, with use of catastrophizing being the stronger predictor of disability. This study presents important findings on potential psychosocial risk factors of functional disability in children and adolescents with chronic back pain. Future research might clarify mechanisms by which such coping styles are developed and explore how familial communication about pain might influence a child's coping ability. PERSPECTIVE: Pediatric patients seeking treatment for chronic back pain often present with substantial functional impairment that is not well explained by disease variables or pain intensity. Two important psychosocial variables (catastrophizing and familial pain history) may provide a context for a better understanding of pain-related disability in children.

Absenteeism↗

PubMed1990

Home or children's treatment centre: where should initial therapy assessments of children with disabilities be done?

Following developmental paediatric consultation at a child development clinic, 50 preschool children newly referred for a developmental rehabilitation programme were assigned randomly for initial therapist assessments at home or at the clinic. It was thought that children would perform more typically at home, that therapists would be able to observe more of the children's usual functions, and that parents would feel more satisfied. Despite several minor statistically significant differences between the two venues, there was no obvious advantage of home evaluation over clinic assessment. However, the added cost of home assessments was marginal, and there may still be some value in seeing young disabled children for first assessment in their own homes.

Cerebral Palsy↗

PubMed2001

The benefits of mutual support groups for parents of children with disabilities.

This study examined what parents of children with disabilities and special needs found helpful about belonging to mutual support groups. Quantitative data (based on 56 parents from 6 groups) indicated that members found the groups very helpful and were very satisfied with the support they received from their groups; they also described the groups as high in cohesion, expressiveness, task orientation, and self-discovery. A grounded theory analysis of focus group data (based on 43 parents from 5 of the groups) indicated that such support was helpful in three broad domains: (1) the sociopolitical, which involved developing a sense of control and agency in the outside world; (2) the interpersonal, which involved a sense of belonging to a community; and (3) the intraindividual, which involved self change. A central theme of identity change emerged as superordinate to these three categories.

Adult↗

PubMed1999

Parental scaffolding of the discourse of children and adolescents with intellectual disability: the case of, referential expressions.

Individuals with intellectual disability find the process of establishing referents to be an especially challenging component of discourse. The present study was designed to examine whether these problems partly result from a failure of parents to appropriately scaffold the discourse participation of individuals with intellectual disability. Children and adolescents with intellectual disability and their parents participated in two dyadic non-face-to-face referential tasks which afforded parents an opportunity to scaffold their children's behaviour as speaker and as listener. Comparisons were made with parents and their typically developing children who completed the same tasks. It was found that the parents of individuals with intellectual disability scaffolded their children's discourse participation to the same extent, as effectively and in the same manner as the parents of the typically developing children. The former were also found to adjust their scaffolding according to their children's level of behavioural competence. In summary, there is no evidence that parents contribute to the referential problems of individuals with intellectual disability.

Adolescent↗