Educational achievement, which for individuals with the metabolic disorder classic galactosemia (GAL) is significantly lower than in the wider population, correlates with self-reported quality of life. Phonological awareness skills underpin the development of literacy, and although literacy is a key contributor to successful academic outcomes, no study to date has investigated phonological awareness skills in children with GAL. This study investigated phonological awareness (PA) in four school-aged children with the disorder, two of whom were siblings. Age range for the children was 7 years 7 months to 9 years 2 months. Each child was assessed with the Phonological Awareness criterionreferenced subtest from the Clinical Evaluation of Language Fundamentals-Fourth Edition. Included in the data for analysis was each child's performance measures obtained from their most recent assessment of cognitive and lexical development. A number of descriptive analyses were undertaken on the data. One child, who met her age criterion for PA, had cognitive and lexical development skills in the average range. The remaining three children failed to meet their age criteria. Although these three children presented with clinically similar cognitive and lexical development skills, disparate PA skills were identified. The PA skills of one of the sibling pair were notably more advanced than his older sibling. The limitations of relying on behavioural test results in children with GAL to predict those most at risk of reduced skill development are discussed in terms future research directions.
Aim
To explore the understanding of and practices of health‐care workers in weaning children from feeding tubes.
Methods
An electronic survey of doctors, nurses, and allied health professionals at Children's Health Queensland obtained demographic information and awareness of various areas of tube feeding management particularly tube weaning.
Results
The 155 health‐care providers formed three well‐matched groups in terms of number and years of experience. Only 18 had formal training in tube weaning. Participants had high levels of knowledge regarding reasons for commencing and possible complications associated with tube feeding. However, health‐care providers generally were found to have limited to no knowledge of tube weaning practices. Nearly half of participants (46%) did not know the best time to plan for a tube wean and only 16 indicated that they or their work units documented tube exit plans, regardless of type of feeding tube, in children's medical charts. Time frames were rarely included as part of tube exit plans. Participants ranked medical stability and presence of a safe swallow most highly as important indicators for successful tube weaning. Multidisciplinary management was also identified as valuable. Tube weaning was predominately managed by children's primary health unit/service and largely involved a medical officer and dietician.
Conclusions
Poor awareness of tube weaning practices such as tube exit strategies may be impacting on the quality of care received by children who are tube fed. Future research should be directed towards developing and evaluating guidelines accompanied by educational resources to further advance tube weaning practices.
The results have important implications for developing best practice models for improving referral processes and access to speech pathology services for children with communication disabilities.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.