The unmet needs of infants, children and young people with dysphagia

Harding, C. (2015). The unmet needs of infants, children and young people with dysphagia. (Unpublished Doctoral thesis, City University London)

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Abstract

This thesis collates a research programme of published papers completed by the candidate during the registration period of study, that are relevant to various aspects of feeding, eating and drinking difficulties (referred to as dysphagia) within a paediatric population from a speech and language therapy (SLT) perspective.

Very few studies examine current SLT practice with this population. In the absence of research specific to the needs of children with congenital disorders, there are approaches being used by SLTs without a full rationale for their use and there is persistence in using therapy approaches that might not be beneficial for a child (Harding & Cockerill, 2014). Key themes present throughout this work include understanding the neurological and physiological underpinnings to an approach; being clear about a therapy rationale; creating therapy methods that consider the capacity of children who are neurologically and learning disabled and their caregivers and integrating communication more clearly into the management of dysphagia.

The studies presented include: i) small case studies describing observations and analysis of communication during typical mealtimes; collaborative therapy programmes specifying strategies and sessions for use of Alternative and Augmentative communication (AAC); evaluation of a therapy programme to reduce aversion to tube feeding; ii) data on use of a straw to evaluate and record changes over age and gender; iii)evaluation of an SLT intervention to train staff within a special school ; iv)a pilot study and RCT investigating the use of non-nutritive sucking (NNS) to wean premature infants off tube feeding onto full oral feeding, and iv) case reports on use of NNS with infants with congenital disorders and the relationship between feeding difficulties and speech development. The studies presented contribute to the evidence base for SLT in a number of ways including describing and evaluating current practice and techniques through case studies and measuring the effectiveness of a SLT protocol through an RCT. The case studies highlight: the importance of checking the knowledge, skills and training of significant others in delivering therapy interventions, the importance of working collaboratively, specifying components of therapy programmes and time needed to implement them, and the importance of communication in its broadest sense within a meal time context. The non–nutritive sucking (NNS) RCT found that children in the intervention groups were able to leave hospital significantly sooner than in the control groups. However, unlike many other studies there was no difference in the time taken to be able to feed orally.

There are a number of methodological issues to consider in evaluating the studies. The issues arising from conducting research within a complex clinical environment are discussed in Chapter 5. These complexities include using significant others to deliver therapy programmes, accurate understanding and descriptions of the premature population, the inclusion and exclusion criteria for studies, and consideration of infants with congenital and neurodevelopmental needs. The needs of and difference between parents are also considered. Evaluation of results also needs to take into account the paucity of tools to measure infants’ skills both by SLTs and parents and other professionals. Recommendations are made for future research. These include more studies to investigate accurate interpretation of infant states, improved descriptions and subsequent stratifications of infant participants; repetition of the RCT with larger sample and in range of settings, inclusion of follow up to 24 months with added measurements of feeding and language skills. The thesis papers also suggest more focus in future studies on the role of communication as a tool to manage risk within mealtimes.

Item Type: Thesis (Doctoral)
Subjects: P Language and Literature > P Philology. Linguistics
Divisions: School of Health Sciences > Department of Language & Communication Science
URI: http://openaccess.city.ac.uk/id/eprint/14908

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