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Informing creation of the FEEDS Toolkit to support parent-delivered interventions for eating, drinking and swallowing difficulties in young children with neurodisability: intervention use by neurodevelopmental diagnosis and healthcare professional role

Lookup NU author(s): Emmy Shaw, Professor Lindsay Pennington, Dr Morag Andrew, Dr Helen TaylorORCiD, Professor Jeremy Parr

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This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).

Abstract

Background The FEEDS (Focus on Early Eating, Drinking and Swallowing) study focused on interventions used to improve feeding for children with neurodisability and eating, drinking and swallowing difficulties (EDSD), and the outcomes viewed as important by healthcare professionals (HPs) and parent carers. The FEEDS Toolkit was created subsequently as an intervention decision aid to be used collaboratively by parent carers and HPs. This study aimed to inform on current intervention practices and influence toolkit design by ascertaining whether specific intervention use varied by a child’s main diagnosis and by specific HP role.Methods FEEDS survey data were grouped by child’s main diagnosis and HP role. Main diagnoses included autism spectrum disorder (ASD) n=183; Down syndrome (DS) n=69; cerebral palsy (CP) n=30). HPs included were speech and language therapists (SLT) n=131; occupational therapists (OT) n=63; physiotherapists (PT) n=57; paediatricians n=50; dieticians n=40; nurses n=32 and health visitors n=14.Results Most interventions were used commonly across diagnoses. However, some interventions were used more commonly with specific conditions, for example, positioning (CP 85%, DS 70%, ASD 23%, strategies/programmes aimed at changing behaviour at mealtimes (ASD 52%, CP 8%, DS 11%); visual supports (ASD 58%, CP 0%, DS 21%). HPs reported using a broad range of interventions, SLTs (mean=13.9), dieticians (12.3), OTs (12.7) and paediatricians (11.1). There was overlap between intervention use and HP role, for example, positioning (100% PT, 97% SLT, 94% OT, 73% paediatricians and 69% nurses).Conclusions Interdisciplinary working is common when managing EDSD, with all HP types using multiple interventions. A child’s main diagnosis does not substantially influence intervention use, and the individual context of each child requires consideration in intervention selection. Study findings have supported development of the FEEDS Toolkit for use in feeding services.

Publication metadata

Author(s): Shaw E, Pennington L, Andrew M, Taylor H, Cadwgan J, Sellers D, Morris C, Garland D, Parr J

Publication type: Article

Publication status: Published

Journal: BMJ Paediatrics Open

Year: 2024

Volume: 8

Issue: 1

Online publication date: 24/08/2024

Acceptance date: 20/06/2024

Date deposited: 11/09/2024

ISSN (electronic): 2399-9772

Publisher: BMJ

URL: https://doi.org/10.1136/bmjpo-2023-002394

DOI: 10.1136/bmjpo-2023-002394

Data Access Statement: Data are available on reasonable request. Data that support the findings of this study are available on request from the corresponding author, Professor JP. Email: Jeremy.parr@ncl.ac.uk. Address: Level 3 Sir James Spence Institute, Royal Victoria Infirmary, Queen Victoria Road, Newcastle upon Tyne, NE1 4LP, UK.

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