Parental experience of paediatric dysphagia service

Parental experience of paediatric dysphagia service and analysis of The Swallow Physiology of Infants and Children with Dysphagia

REC REF:  TBC

Not yet recruiting.

This study is in two parts. The first part is a qualitative study using focus groups to explore the parental experience of paediatric dysphagia services and the management of healthy, developing children.
The second part of the study is prospective and observational; it utilises objective, quantitative video fluoroscopic swallow measures to profile swallowing in infants and children with dysphagia and compares swallow measures of neuro typical children with neuro atypical children.

STUDY OBJECTIVE

The aims of this study are to explore how parents experienced the process/pathway to access specialist services to diagnose their otherwise healthy and typical developing child’s dysphagia.
And
To apply Swallowtail software for objective and quantitative analysis of the videofluoroscopy swallow studies of infants and children with dysphagia, as well as to define the predictive markers of aspiration in infants and children with dysphagia.

OVERVIEW

There is a global increase in dysphagia in infants and children. The UK government publication on infant feeding profiles clearly demonstrates this trend (Great Britain, Department of Health and Social Care, 2013). Hospital admissions of children aged less than one year with feeding difficulties increased from 30.6 per to 57.9 per 1000 live births from 2002 to 2010. This is partly because advances in medical care have reduced mortality in medically vulnerable children born prematurely with low birth weight and complex medical conditions. To date, there is a lack of evidence-based guidelines for the assessment and management of paediatric dysphagia and a lack of appropriately trained staff, all of which impact the parents’ quality of life, which we aim to highlight in this study. It is therefore vital to understand the impact of dysphagia on the well-being of the parents to identify the needs for support and ensure an optimal outcome of treatment.
Videofluorosopy swallow study (VFS) is the gold standard instrumental assessment tool to assess swallow function.