Respiratory problems in children with neurological impairment.
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Children with severe neurological impairment have a high incidence of respiratory problems which are multifactorial and may be related to or dependent on the underlying disability. In addition, common respiratory conditions such as asthma will be represented in this group as in the general paediatric population. In order to maximise quality of life and reduce morbidity and mortality, each child should be carefully assessed and treated, making adjustments where necessary in the treatment regime to take account of the disability. (+info)
Outcome of children with prenatally diagnosed central nervous system malformations.
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OBJECTIVE: To study the outcome of pregnancies with a prenatally diagnosed central nervous system (CNS) malformation. METHODS: Leiden University Medical Centre is a tertiary referral center for fetal ultrasound and invasive prenatal diagnosis. Maternal and neonatal records of prenatally diagnosed CNS malformations were retrospectively reviewed over a 6-year period (1993-1998). Information on current development of surviving children was obtained by contacting the care-giving pediatric neurologist. RESULTS: During the study period 124 fetuses were diagnosed with a CNS malformation. Data on pregnancy and delivery were available for 118 pregnancies. Additional malformations were present in 47% of fetuses (55/118). A total of 46% of pregnancies (54/118) were terminated, and 15% (18/118) ended in spontaneous intrauterine death. A total of 39% of pregnancies (46/118) resulted in live birth, and 29 of the infants were still alive at the age of 3 months. One child was lost to follow-up, one infant died at the age of 4 months, and two children died at the age of 3 years. Psychomotor development of the remaining 25 children was normal for five, slightly disabled for seven, moderately disabled for five and severely disabled for eight. CONCLUSION: Due to the high rate of termination of pregnancy and to the frequent association with other anomalies, the survival rate of pregnancies in which a CNS defect had been diagnosed prenatally was only 25%. More than 50% of surviving children were moderately or severely disabled. (+info)
Where the action really is: Medicaid and the disabled.
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Discussions of Medicaid tend to focus on low-income children and their mothers and the institutionalized elderly as the principal beneficiaries, but Medicaid spends more on the nonelderly disabled than on any other group. In the past two decades Medicaid has helped finance the deinstitutionalization of the mentally retarded and a growing proportion of the mentally ill, but implementation of the Olmstead decision has deflected advocates' attention from the more important issue of how managed care plans treat disabled Medicaid beneficiaries. (+info)
Utilizing role theory to help employed parents cope with children's chronic illness.
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Role theory is utilized to detail a six-step process for developing balanced coping through role negotiation. As applied in this paper, the role theory framework provides health educators with a useful tool for helping employed parents cope with a child's chronic illness. The emphasis is on partnering with parents or primary caregivers to identify, understand and manage the multiple role demands of working parents with chronically ill children. Role theory suggests ways health educators can support balanced coping by educating families about the demands of a child's illness, and helping to reduce those demands, helping to increase family resources, supporting parents and facilitating role negotiation. The ultimate goal is the development of balanced coping strategies that (1) meet the medical and emotional needs of the ill child, (2) allow parents to maintain their physical and mental health, and (3) enable parents to meet the demands of their other roles (e.g. paid employment). (+info)
Orthodontic treatment need and self-perception of 11-16-year-old Saudi Arabian children with a sensory impairment attending special schools.
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AIM: To determine the self-perception and need for orthodontic treatment in young sensory [visual (VI) and hearing (HI)] impaired children attending special schools in Riyadh, Saudi Arabia. Also, to determine if gender and social class background influence the rating and self-perception of malocclusion among the children. LOCATION: Riyadh, Saudi Arabia. DESIGN: A prospective study on orthodontic treatment need in sensory impaired children. SUBJECTS: Seventy-seven VI, 210 HI, and 494 control (C) children aged 11-16 years. METHOD: The aesthetic component (AC) of the Index of Orthodontic Treatment Need (IOTN) was determined using the standard 10 pictures for the C group and HI with a modified version (tactile graphic) for VI. The dental health component (DHC) and AC of IOTN were used to allocate each child to no need, borderline need and definite need for treatment subgroups. RESULTS: Sixty-five per cent of VI, 21.8 per cent HI, and 18.7 per cent of the C were perceived to be in need of orthodontic treatment. However, 55.8 VI, 43 per cent HI and 34 per cent C were rated for treatment need based upon the AC. The difference between the examiner and the child's rating of treatment need was found to be statistically significant among the HI and control children (P < 0.001). CONCLUSION: The VI children who were scored for treatment by the examiner as having need for treatment had similar perceptions of their treatment need irrespective of their social background. Male VI children had a higher DHC score, but both VI and HI males had a higher normative and self-perceived need based on AC. (+info)
Evaluation of cultural competence and antiracism training in child health services.
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AIMS: To evaluate the acceptability and effectiveness of cultural competence and antiracism training to professionals providing services to ill or disabled children. METHODS: Immediate post-training and retrospective questionnaire survey of trainees. Main outcome measures were acceptability; perceived relevance to practice; previous training in this area; perceived impact on professionals' confidence in providing care to diverse communities; and reported changes in behaviour and practice. RESULTS: Cultural competence and antiracism training has been neglected in the health sector but is well received by professionals. It is a positive experience for trainees and perceived to be relevant to their practice. Appropriate and non-threatening training in cultural competence changes attitudes, behaviours, and practice, including promoting good practice in communication across linguistic and cultural differences. CONCLUSIONS: Appropriate cultural competence and antiracism training is both effective and acceptable in child health services. (+info)
A population-based study of prognostic factors related to major disability in very preterm survivors.
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OBJECTIVE: This study was conducted to determine the rates and risk factors for major disability in very preterm survivors born to residents of Nova Scotia, Canada between 1992 and 1996. STUDY DESIGN: A cohort study was conducted of all 355 infants born to Nova Scotia residents between 22 and 30 weeks gestation. Major disability was defined by mental development index <70, moderate or severe cerebral palsy, bilateral visual acuity <20/200, or deafness requiring bilateral hearing aids. Logistic regression analysis was used to determine which factors were significantly associated with major disability. RESULTS: Of the infants who survived 1 year and had follow-up data, 21 (8.3%) developed a major disability. Cystic periventricular leukomalacia (PVL), hypernatremia and surgery requiring general anesthesia were independently associated with the development of a major disability. CONCLUSION: This study confirms the association between cystic PVL and major disability observed in other studies. Surgery and hypernatremia will be important to verify in future studies since preventive measures may be possible. (+info)
Quality of life of adolescents with perceived disabilities.
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OBJECTIVE: To compare the self-perceived quality of life (QoL) of adolescents with and without disabilities. METHOD: A school-based survey was conducted with 2801 7th to 12th grade students in a rural area of the United States. The Youth Quality of Life Instrument-Surveillance Module and the Youth Quality of Life Group-Disability Screener were completed. RESULTS: Twenty-one percent of all students surveyed reported having one or more physical, emotional, or learning disabilities. Adolescents with disabilities reported lower QoL than adolescent without disabilities. However, self-rated health, depressive symptoms, and contextual variables were significant covariates in the relationship between disability and QoL. CONCLUSIONS: These findings suggest channels to improve the QoL of adolescents with disabilities. Specifically, reducing social and environmental barriers to promote inclusion of adolescents with disabilities in school, family, and community activities is one practical avenue for reducing disparities in QoL. (+info)