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. 2022 Apr;6(1):e001425.
doi: 10.1136/bmjpo-2022-001425.

Developing the FEEDS toolkit of parent-delivered interventions for eating, drinking and swallowing difficulties in young children with neurodisability: findings from a Delphi survey and stakeholder consultation workshops

Helen Taylor  1 , Lindsay Pennington  1   2 , Christopher Morris  3 , Dawn Craig  1 , Helen McConachie  1 , Jill Cadwgan  4 , Diane Sellers  5 , Morag Andrew  2 , Johanna Smith  6 , Deborah Garland  7 , Elaine McColl  1 , Charlotte Buswell  2 , Julian Thomas  1   2 , Allan Colver  1 , Jeremy Parr  8   2
Affiliations

Developing the FEEDS toolkit of parent-delivered interventions for eating, drinking and swallowing difficulties in young children with neurodisability: findings from a Delphi survey and stakeholder consultation workshops

Helen Taylor et al. BMJ Paediatr Open. 2022 Apr.

Abstract

Background: Young children with neurodisability commonly experience eating, drinking and swallowing difficulties (EDSD). Little is documented about which interventions and outcomes are most appropriate for such children. We aimed to seek consensus between parents of children with neurodisability and health professionals on the appropriate interventions and outcomes to inform future clinical developments and research studies.

Methods: Two populations were sampled: parents of children aged up to 12 years with neurodisability who experienced EDSD; health professionals working with children and young people (aged 0-18 years) with neurodisability with experience of EDSD. Participants had taken part in a previous national survey and were invited to take part in a Delphi survey and/or consultation workshops. Two rounds of this Delphi survey sought agreement on the appropriate interventions and outcomes for use with children with neurodisability and EDSD. Two stakeholder consultation workshops were iterative, with the findings of the first discussed at the second, and conclusions reached.

Results: A total of 105 parents and 105 health professionals took part. Parents and health professionals viewed 19 interventions and 10 outcomes as essential. Interventions related to improvement in the physical aspects of a child's EDSD, behavioural changes of the child or parent, and changes in the child or family's well-being. Both parents and health professionals supported a 'toolkit' of interventions that they could use together in shared decision making to prioritise and implement timely interventions appropriate to the child.

Conclusions: This study identified interventions viewed as essential to consider for improving EDSD in children with neurodisability. It also identified several key outcomes that are valued by parents and health professionals. The Focus on Early Eating, Drinking and Swallowing (FEEDS) Toolkit of interventions to improve EDSD in children with neurodisability has been developed and now requires evaluation regarding its use and effectiveness.

Keywords: Growth; Health services research; Neurodisability; Neurology; Therapeutics.

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Conflict of interest statement

Competing interests: DS received a research grant from Nutricia Advanced Medical Nutrition UK (Wiltshire, UK) from 2017 to 2018, honorarium payments from Nutricia Advanced Medical Nutrition UK from 2015 to 2019 and an honorarium payment from Nutricia Advanced Medical Nutrition UK in 2018. MA received fees from Nutricia Advanced Medical Nutrition UK to attend a conference in which she was presenting industry partner research work and lecture fees/symposium presentation fees from Nutricia Advanced Medical Nutrition UK and Nestlé SA (Vevey, Switzerland). JC reports personal fees from Novartis Pharmaceuticals (Basel, Switzerland) and Allergan, and Ispen Pharmaceuticals (Paris, France).

Figures

Figure 1
Figure 1
Flow diagram of Delphi Survey recruitment. HPs, health professionals.
Figure 2
Figure 2
Outline of FEEDS Toolkit of interventions. EDSD, eating, drinking and swallowing difficulties; FEEDS, Focus on Early Eating, Drinking and Swallowing; NHS, National Health Service.
See this image and copyright information in PMC

References

    1. Morris C, Janssens A, Tomlinson R, et al. . Towards a definition of neurodisability: a Delphi survey. Dev Med Child Neurol 2013;55:1103–8. 10.1111/dmcn.12218 - DOI - PubMed
    1. Sullivan PB, Andersen GL, Andrew MJ, eds. Nutrition in neurodisability. London: Mac Keith Press, 2019.
    1. Taylor H, Pennington L, Craig D, et al. . Children with neurodisability and feeding difficulties: a UK survey of parent-delivered interventions. BMJ Paediatr Open 2021;5:e001095. 10.1136/bmjpo-2021-001095 - DOI - PMC - PubMed
    1. Parr J, Pennington L, Taylor H, et al. . Parent-delivered interventions used at home to improve eating, drinking and swallowing in children with neurodisability: the feeds mixed-methods study. Health Technol Assess 2021;25:1–208. 10.3310/hta25220 - DOI - PMC - PubMed
    1. Marshall J, Ware R, Ziviani J, et al. . Efficacy of interventions to improve feeding difficulties in children with autism spectrum disorders: a systematic review and meta-analysis. Child Care Health Dev 2015;41:278–302. 10.1111/cch.12157 - DOI - PubMed

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