Update on research into training and support for children with feeding tubes

Published: Thu, 17th October 2019, 10:30:00 AM

University of Oxford PhD student Bethan Page, recently submitted a poster updating us on her research exploring how to better prepare and support parents to provide complex medical care for children, both practically and emotionally. This care may for example include tube feeding, tracheostomy care and home oxygen. 

Some TOF families have already taken part in Bethan’s initial study into your experiences of learning to provide specialist care, where Bethan asked about your anxieties and worries and how you think training and support could be improved. You can still get involved in the study here

Initial findings show that parents are concerned about: the quality of training parents receive and how variable it can be; feeling unprepared to manage emergencies and problems; and worrying about hurting their child or making a mistake.

Bethan, along with a team of clinicians, parents and researchers devised a booklet on gastrostomy button and PEG care, available here

The team are currently exploring how to turn this information into online training with mini quizzes and videos and pictures. Note, if you live in or near Oxfordshire and would like to help do get in touch. Bethan’s contact details are available from the TOFS office. 

You may be interested in reading the academic article on feeding tube care and how it can be improved.  A Google search should reveal the article, which is ‘open access’, so freely available to all. The academic article is: Page B, Nawaz R, Haden S, et al. Paediatric enteral feeding at home: an analysis of patient safety incidents. Archives of Disease in Childhood. Published Online First: 14 June 2019

A paper on tracheostomy/ventilation care is under review which should be published later this year.

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