Search Results: MCHLine

Annotation: This project addressed the complex service needs of children who require sophisticated technological interventions and an environment which fosters developmental progress. Activities included: providing medical services to children; establishing a licensure category for Prescribed Pediatric Extended Care (PPEC) centers; disseminating information on the project through monographs, workshops, conferences, and publications; providing ongoing staff training and family support and educational services; establishing third-party reimbursement policies which will make the center financially self-supporting; and conducting a cost-effectiveness evaluation comparing the PPEC centers to other forms of care. [Funded by the Maternal and Child Health Bureau]

Keywords: Apnea, Chronically Ill, Cystic Fibrosis, Developmentally Delayed/Disabled, Gastrostomy, Injuries, Reimbursement, Technology-Dependence, Uninsured persons, Vater's Syndrome, Ventilator Dependence

Annotation: This study aimed to: (1) Compare the thyroid function of Down syndrome newborns with matched controls; (2) confirm the incidence of hypothyroidism in Down syndrome infants in the first year of life when treatment is most beneficial; and (3) determine whether the onset of hypothyroidism coincided with elevation of thyroid antibodies in Down syndrome children. The study had a two-part design. The first was a matched control design and the second was longitudinal. 46 Down syndrome newborns diagnosed with hypothyroidism were followed. The study's findings indicate that Down syndrome newborns have an increased incidence of thyroid function compared with the newborn population, and that in the first three years of life, the onset of hypothyroidism in Down syndrome children precedes the detection of elevated antithyroid antibody titers. Future studies should compare the incidence and onset of hypothyroidism and elevation of thyroid antibodies in the same children from birth through adolescence. [Funded by the Maternal and Child Health Bureau]

Keywords: Chronically ill, Down Syndrome, High risk infants, Hypothyroidism, Longitudinal studies, Neonatal screening

Annotation: This network sought to improve the care of children and adolescents with hemophilia and cystic fibrosis. To this end, the network developed a computerized medical information system which allowed health professionals to quickly enter and retrieve patient information. It also provided a series of workshops for parents on psychosocial issues. [Funded by the Maternal and Child Health Bureau]

Keywords: Chronically Ill, Cystic fibrosis, Data Bases, Education of Parents, Families, Hemophilia, Networking, Parent Networks, Stress

Annotation: This study investigated whether mothers could use the Yale Observation Scales (YOS) reliably to detect serious febrile illness in their children. Also, this study examined whether the judgements of mothers using the scales were more sensitive for serious illnesses as well as having higher specificity and negative predictive accuracy for non-serious illnesses than control mothers who did not use the YOS. In addition, the project looked at what adverse effects, if any, certain maternal characteristics would have on the reliability of the mother's judgement. The study used a randomized, controlled trial design. 383 mothers participated in the study. The researcher found that the use of the YOS improved the intervention group mothers' judgements as compared to the control group mothers' judgements but did not significantly improve sensitivity. In addition, certain maternal variables affected judgement in the control group. These variables included lack of a high school degree, higher state of anxiety, higher perception of child vulnerability, and welfare recipient status. [Funded by the Maternal and Child Health Bureau]

Keywords: Acute febrile respiratory illness, Chronically ill, Detection, High risk infants, Mothers

Annotation: This study was designed to investigate whether differential risks of maltreatment could be identified within a population of children with multiple disabilities. The specific purpose was to investigate whether demographic, social, family stress, or child physical functioning or appearance factors could differentiate multiply-disabled children reported as maltreated from those not so reported. A non-concurrent prospective design was used. A cohort of children was identified who were evaluated between 1973 and 1984 at the John F. Kennedy Institute in Baltimore, Maryland. The project found the hypothesis that within a multiply-disabled population child characteristics indicating caretaking difficulties would be associated with maltreatment reporting was not substantiated. However, demographic characteristics were associated with maltreatment reporting. The investigators recommend future examination of the role of stress in maltreatment. [Funded by the Maternal and Child Health Bureau]

Keywords: Children with special health care needs, Chronic illnesses and disabilities, Chronically ill children, Families, Maltreated children, Risk assessment, Stress

Annotation: The main objectives of this study were to: (1) Delineate the adaptive compromises that families make to the severe chronic illness or disability of a child; (2) identify factors associated with good adaptation; (3) construct and pretest instruments that might be useful in studying adaptation; and (4) explore conceptions concerning family adaptation among health professionals who care for chronically ill or disabled children. A total of 50 parents from three illness groups were evaluated: Parents of children with cystic fibrosis; of children with autism; and of children with cancer. The study found that during the developmental phase, neither parents nor professionals approached the situation or their task with unanimity. Parental answers to questions about adaptation indicate that this process required a fundamental value change and reorientation about what—both in the day-to-day and in the long run—matters. Although the study was originally intended to help develop a screening instrument useful to service personnel in the identification of families at risk, the researchers conclude that in light of both the lack of consensus among professionals and the investigator's inability to differentiate families at risk with the scales used, it is questionable whether families can or should be screened for risk. [Funded by the Maternal and Child Health Bureau]

Keywords: Autism, Cancer, Children with special health care needs, Chronically ill, Coping behavior, Cystic fibrosis, Families, Family functioning, Risk assessment

Annotation: This study was designed to examine management and behavior problems in young children with chronic illnesses in order to develop effective comprehensive health services. The relationship between self-control, attention, maternal characteristics, child characteristics, and chronic illnesses was studied for a group of young children. The research design was a cross-sectional, matched subject investigation of preschool-aged children, half of whom had a chronic illness and half of whom were healthy. 60 children, aged 2-5 were studied. The findings of the study confirmed the importance of the total family as the appropriate unit for intervention and support. A finding of interest was the relationship between severity of diagnosis and age of onset of the child's illness to maternal depression. This may have implications in planning services and early intervention with families of young chronically ill children. [Funded by the Maternal and Child Health Bureau]

Keywords: Behavior problems, Chronic illnesses and disabilities, Chronically ill children, Depression, Early intervention, Families, Mothers, Preschool children